Be encouraged…healing is possible! Have hope!
LEARN MORE ABOUT LYME DISEASE by scrolling down on this page where I share my personal story/battle with this spirochete that can get not just into your joints, but also into your brain.
Note: michelleonlyme.org is no longer active. Please route all others interested in Lyme Disease to michellebackes.com.
This my lyme story.
MAIN "TAKE AWAY POINTS" FROM YOU TUBE VIDEOS:
- Be your own health advocate! There is no way we can expect doctors to be experts on everything. Research !!! (Seek and you will find!)
- Lyme disease (diagnosis and treatment) continues to be poorly understood and a source of intense controversy among patients and physicians.
- Almost half the people with Lyme don't even recall a tick bite! YIKES!
- This borrelia burgdorferi (Lyme) spirochete bacteria is very slow growing, persistent, and "stealthy." It can go into your blood and tissue, causing both muscular-skeletal AND/OR neurological issues.
- This disease is also called the "Great Imitator" because its symptoms often present as many other diseases: MS, Parkinson's, ALS, Arthritis, Lupus, Chronic Fatigue, Fibromyalgia...
- Symptoms include, but are not limited to...fatigue/lethargy, muscle and joint pain, numbness/tingling, fever, headache, chills, 'brain fog', Bell's palsy (wore the shoes pictured on side of this page all morning and didn't even notice! YIKES!) (Same size heels though : ) ), eye floaters/lid twitching sleep disturbances, vision problems, dizziness/vertigo, leg cramps...
- Common tests don't test directly for the Lyme bacteria (antigen) itself; they test for antibodies, a sign of your body's defense mechanisms, caused by the presence of the Lyme bacteria. Some people who are sick with Lyme disease do not produce any detectable antibodies to the bacteria, so they will not test positive on antibody tests. These antibodies can be tested with a Western Blot test. When you order a Western Blot test from any lab other than IGeneX, you must REQUEST THAT ALL TEST BANDS BE REPORTED TO YOU, especially bands 31 and 34.
WORTHY TO NOTE: I tested NEGATIVE on the standard ELISA test so they said I DIDN'T HAVE LYME DISEASE!!!
- You only need ONE Borrelia burgdorferi-specific positive band on a Western Blot test to be considered positive for Lyme disease. (See Dr. Crist's Western Blot Explanation in my ARTICLES section for more on this.)
- For a case of Lyme disease to meet national infectious disease reporting standards, the Centers for Disease Control and Prevention (CDC) currently requires 5 positive bands on the IgG section of the Western Blot test or 2 positive (of 3 specific bands) on the IgM section of the same test. Many physicians are not aware that this CDC standard was designed for their surveillance purposes; it is NOT to be used as a standard for diagnosis!
- As of January 1, 2008, you can ask your physician to order a Western Blot test for Lyme disease, instead of the usual (and unreliable) screening test known as an ELISA or IFA. (Again my ELISA was negative.) For a highly sensitive and specific Western Blot test you can order a FREE kit from IGeneX Labs. (See LINKS.) IGeneX is a tick-borne disease reference lab which meets more strict standards than common labs. IGeneX reports all bands on Western Blot tests. (My IGeneX test was important in my diagnosis.)
- Present this information (and that which you find in your own research) to your family doctor. If you feel you were not successful with your family doctor and you want another opinion on your symptoms, you should consider making an appointment with one of the Lyme Literate doctors (LLMDs) recommended on the ILADS website. (See LINKS.)
- Remember - it is OK to ask your family doctor for an empiric treatment trial of 4-6 weeks of antibiotics. You are the patient; you must be your own advocate! (FYI, I took nystatin to prevent yeast overgrowth--a side effect of antibiotics--for the whole year I was under treatment and had NO stomache issues.)
- Long term antibiotics do work! (Another FYI, over 70% of the antibiotics in America are used in animal feed - don't worry too much about the 'superbug' : ) )
- Two of my lesions are GONE!
- Keep your sense of humor even though ticks do suck! : )
- Rest, sunshine, good nutrition, and of course, prayer are also key to recovery!
Here are the group prayer requests/health update e-mails I sent throughout this trial...I share only in hopes that they may help inform and encourage you if you or a loved one also are finding yourselves in this "Lyme Disease Club..."
(1) 8/08/06 Prayer Request - Initial MS News
(2) 8/28/06 Wisconsin Hells - 5 Day Hospital Stint
(3) 9/01/06 Camping - Explanation of 'Camp A' (MS) & 'Camp B' (Lyme)
(4) 9/07/06 Greetings From MO - Trip to Lyme Specialist
(5) 10/07/06 Must See Movie - Facing The Giants Plug
(6) 11/30/06 3 Months In - Overall Update (Medical, Physical, Spiritual)
(7) 2/27/07 7 Months In - Overall Update (Medical, Physical, Spiritual)
(8) 7/03/07 Top Ten - General update(9) 1/24/08 Off Meds! - Feeling Great!
----------------------------(1) 8/08/06 "Prayer Request" - Initial MS News
Michelle here ... some of you know, some do not but...here goes...I got a huge dose of LIFE yesterday. Story unfolds as such: Sat. did a triathlon with friend and woke up with a numb upper right lip. Ran the run part and my right leg 'tingled' the whole time. (Thought ...weird? but am 35 now so this must just be what happens - I did have the home phone with me in the passenger seat of the van one morning last week so this was just another one of those 'moments' ha...) Sun. the lip was still numb - leg was fine. Mon. whole right side of face and head and right forearm/fingers felt numb or like I had Vicks Vapor rub on it. It had my total attention, and my doctor's, and before I knew it I was having a brain MRI and throat ultrasound. Got the results yesterday, Tuesday, that I have 3 lesions, 1 of which is in the 'classic' spot for MS. ( I'm in a club I don't want to be in and can't even spell it : ) ) (All other results are great - even said my cholesterol was "beautiful" - any other day and I would have actually felt good about that : )
I do have two aunts and my dad's cousin that have MS......and "THEY" say it's "not hereditary but does run in families" - go figure that one out.After preliminary 'internet surfing' I realize there are many treatment options/debates. I'm obviously looking to meet with a MS neurologist and desire to get after this as quickly as possible. I know many of you know people that have this. Please pass along any 'good scoop' (effective treatments/doctors/success stories etc.) if you can.
We do continue to praise the Awesome, Almighty God - we're not mad just SAD. This too is part of His plan, We appreciate all your thoughts and prayers,
Michelle and Ron (and tikes) BackesHey, Hershee (our dog) and I ran 30 minutes this a.m.! Game on!
(2) 8/28/06 Wisconsin Hells - 5 Day Hospital Stint Hello Everyone,
Pardon the pun in the subject line but wanted to give you yet another update. We got to the Dells Sun. night, ready for a week of 'swirly water fun' and that's what we got, but in a whole different way than expected.............
I was awaken on Mon, at 5 am with face numbness, sweats, CRAZY vertigo and hmmm...swirly water (if you know what I mean). I HAVE NEVER BEEN SO SICK IN MY LIFE! By 3 pm Monday I was in the hospital on IV's and have been here ever since. My parents (best in the world!) came down Tues. night to help provide support and help the kids have this fantastic week at the Dells. (Yes, sarcasm may be a bit more evident in this e-mail.) This also allowed Ron some more cuddle time with me in these wonderful hospital beds - good thing we're both so petite!
It looks like the MS is confirmed officially, my docs from MN whom I've only met with once, have been calling the shots down here (yes, another pun intended.) I'm spose' to really avoid stress and fatigue. Thought you'd all get a kick out of the fact that twice last night they had to wheel us all into the hall b/c of tornados warnings and softball sized hail. (Meanwhile Ron, my mom, and kids are in their swimsuits sequestered in the basement of some resort restaurant.) SLEPT GREAT with the bright lights, other people's beepers and softballs lullin' me to sleep. ha (Side note for the Brewer fans out there - you'd appreciate my dad's attempts to sneak back into the room to give us all the game updates during the first storm warnings.) He and my girlfriend Kathy from Madison were both there. What a provision! Not sure how but we laughed the whole time : )
It's Thurs. night - I'm waiting for my third round of ROIDS (watch out Bonds!) and trying really hard not to see two of Ron. I love him but the double vision's gotta go. ha I hope to go to Ladysmith tomorrow and spend time at my parents house being a 35 yr. old dependent daughter again. I can't wait to get out of this neurological head/tingling spell and start the management phase - hoping for symptoms to subside soon!
Amazingly, I have had incredible support and feel the prayers (hey, the tornados didn't hit!) I know God has big things planned with this and am quickly put in my place that it is His will not mine.
I love the encouraging notes and awesome verses from you all. Keep them coming as you feel led but I do need to let you know I'm putting myself on an e-mail moratorium (unless basketball sized hail comes my way: ) ) With MS, it's REALLY important for me to get rest, reduce business and stress and allow my body to recover. I also need to spend time with my crew, not allow my (slightly) type A personality get in the way and want to respond to every message : ) I will send an update when we know more or if there are any new developments. I know you understand.
Here's the verse I got today that was awesome... "Trust me in your times of trouble, and I will rescue you, and you will give me glory." Psalm 50:15
Hope you and your families are enjoying each other. Let us know how we can be praying for you too! Michelle and Ron
(3) 9/01/06 Camping - Explanation of 'Camp A' (MS) & 'Camp B' (Lyme)
Yes, another mass e-mail coming your way...so impersonal, yet efficient so I'll stick with it - not the journaling on-line type yet : ) I just wanted to let you know I am officially home (Lindstrom) as of Monday night. YEA! My incredible parents literally sequestered me for awhile at the lake (how therapeutic is that?!) after our fantastic family trip. What a blessing they have been! (I did feel like I was a kid again, esp. when Pops gave me the cut throat sign for too much phone -ha) Meanwhile, Ron came back early to try and mow a path for us to get to the house, make sure no more goldfish jumped the bowl and continued to raise our monthly donors etc. (It is during times like this I realize what a MAN I married !!!!) I also returned to my incredible neighbor friends/church friends who had already lined up meals etc. for these first weeks back while I convert fromType A to Type B right before their very eyes. But, all of you know how much I love to cook, experiment and putz in the kitchen, I just had to turn them down - NOT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What another blessing! WOW - sometimes you have to be on the receiving end too : ) )
I want to make this as succinct as possible yet provide 'scoop' to those that want details so here goes...Symptons currently are this: (no more vertigo! YEA!) L side of face is always tingly, whole R side is numb w/ tingly R hand and foot - R ear has 'full' feeling (sign there's a lot in there right?) moving fine though just tired. I have met with all the docs upon returning, this counts as a 'separate event' so we hear on Thurs where we go from here...to Camp A "MS Management" etc. b/c all other blood work etc. is fine.
(Camp A ) Was prepared for this as much as I could be, had an idea of the drug "I" would choose, better to be on something than nothing mentality etc. EXCEPT, yesterday I got a positive 'Band 23' blood result on a Western Blot Lyme test which is an indicator for the bacteria associated with Lyme disease. (I had to push for this test on my own as my initial ELISA Lyme titer was negative - I've stumbled on quite the debate here in the ole medical community regarding this...) I did get bit by a deer tick May 6th, on me a good 24 hours-UGH, and then on doxycycline for 10 days,,,,welcome to Camp B!
Last night a friend from church spent three hours over here sharing the most current research regarding Lyme etc. (He was diagnosed and treated with Parkinson's for 18 years w/out symptom relief and is fine now after 'a few' antibiotics - it was Lyme after all. ) Both Camps have strong feelings about each other...trouble for me is that both Lyme and MS are clinically diagnosed and have very similar symptoms...so...a camping I will go??? (Either way the treatment for the next year is REST, limited activities and medication...not sure what types...)
Specific prayer requests would obviously be for healing : ) and clear direction for correct plan of treatment.. Also specifically for our kids as they try to make sense of this (which must be incredibly challenging at 5 and 6 when I'm 35 and it makes no sense to me!!!!!!!!!!!!!!!!!!!!! : )
Thanks to all of you ! We do feel like you are in the cars with us, all acked up with hail and tornado gear, ready to go camping too : )
Although we're still working on getting our 'map' we continue to draw great strength and comfort from God who is big enough to handle this!
Zip your tents tight! ( Be on the alert. Your adversary, the devil, prowls around like a roaring lion, seeking someone to devour. 1 Peter 5:8) Shel I got a card with this on the front - I love it.... God Will Get You Through - Not Somehow, But TRIUMPHANTLY!!!!
(4) 9/07/06 Greetings From MO - Trip to Lyme Specialist
Well...Ron and I are on our way back from Springfield, MO. Yep, we got the call this Dr. Charles Crist (Lyme Specialist) had an opening for Thursday 7 am! (I was scheduled for Sept. 29th) We couldn't believe it! (Right before I was to start on MS drugs!!) We cleared the schedules, friends watched the kids (THANK YOU!) until my parents made it over (THANK YOU!) and we embarked on the 10 hour drive down Weds.
Our consult was 1 1/2 hours long and VERY informative. He thinks my symptoms are all related to a tick-born infection. (I was bit by a deer tick in May but many of his patients don't remember being bit). He said 97% of the people he's treated with my symptoms, using longer antibiotic treatment, get back to NORMAL (Ron giggled - I guess NORMAL is all relative : ) ) I know I'm have a long road ahead of treatment, and need to continue to rest etc. but am going to choose this "Camp" for now.
As I mentioned before, this puts me in the middle of a HUGE medical debate! I HAVE to be my own advocate as the Neurologists and Specialists I've seen have called 'these Lyme people' and I quote, "Quackery, its almost like they're a cult, I'm getting a headache already" ...while the Lyme side says, "unfortunately what this is taking is doctors themselves and/or their family members getting Lyme - and its happening". I know I am not in a position to become an advocate of this AMAZING Lyme information (some are calling Lyme Disease the next American TSUNAMI !!!) without being a patient first, but what I have learned so far has blown my mind (lesions and all! ha). I do want to mention that I understand medical doctors cannot research every disease out there and many are open to the latest Lyme (borreliosis) research...it just takes time.
So here's my one-time PLUG until you get your next e-mail in a few months when I'm hopefully symptom free...If you have any question as to your chronic illness 'diagnosis' (MS !, Fibromyalgia, Chronic Fatigue, ALS, Lupus, Parkinson's, Crohn's Disease...) you may want to ask your doctor to order the Western Blot Blood Test (just a regular lab draw for you) and its very important you have it sent to the IGENEX LAB in California (they run the full tick panel). You will have to pay the roughly $395 up-front and then will hopefully get reimbursed by your insurance. It is my opinion, after my last month's learning experience with MS... being the 'default' disease it is (we can tell ya what you don't have...no cause/cure for this... yet) that you request this Western Blot. I'm sure many do have MS, but it is again my opinion and experience, that this test is money well spent - at least to rule out Lyme by a test other than the standard ELISA test - which isn't always effective! (I'm positive for the Lyme's bacteria but was negative on the ELISA test and even now, not positive on enough panels for CDC to call it Lyme - its like being "kind of pregnant???" UGH! This has been frustrating if you can't tell : ) )
We have incredible PEACE about pursuing this direction of treatment, God has His hand in this whole deal as I can already see! One of the many praises is my family doctor is very open to this as her old nurse had Lyme - she will continue to treat me here under Dr. Crist's recommendations. I know I may get worse symptoms at times when the bacteria is killed and toxins are released but I'm "in" - Once again..."Game On!"
Thanks to all of you...for understanding about my inability to respond individually to calls/e-mails, for your encouraging words/verses, and for praying us up! Keep the prayers coming : )
(I read this, its awesome - wanted to share...There were two artists who were asked to paint pictures of 'peace' as they perceived it. One painted a quiet, still lake, far back in the mountains. The other painted a raging, rushing waterfall which had a birch tree leaning out over it with a bird resting in a nest on one of the branches.
Which one truly depicts peace? The second one does, because there is no such thing as peace without opposition. Some would argue the first painting represents stagnation. The scene may be serene, you may want to go there to rest and recuperate but it doesn't depict "the rest of God.")
"Peace I leave with you. My own peace I now give and bequeath to you. Not as the world gives do I give to you..." John 14:27) PEACE! Michelle (and Ron) I'm attaching web sites for your further investigation if you're interested... WESTERN BLOT INFO / IGENEX LAB SITE: www.igenex.com DR. CHARLES CRIST www.drcharlescrist.net
(To answer why we chose him and didn't stayed in state? We went this route for two main reasons: 1) referral from two people in Lindstrom that have seen him and are 'Normal' now (One was diagnosed with Parkinson's for over 18 years and the other 'Chronic Fatigue/Fibromyalgia' - it was Lyme for them both!) and
2) he has had over 18 years clinical experience with this - a Mid West Guru! There are only two other doctors in MN that are specialists in Lyme that I know of, but one is so busy she's closed now and 3 months out for existing patients and the other has been in it for 6 months or so. )
LYME SITES: www.lymeinfo.net This is a well organized site with a lot of medical and research information. www.lymenet.com Use the "Flash Discussion" area of this site where you will find thousands of real patients discussing their experiences. www.ilads.org This is a national organization of doctors that treat chronic Lyme's disease.
(5) 10/07/06 Must See Movie - Facing The Giants Plug
Hi Everyone !
Never before have we sent out one e-mail to absolutely everyone in our database but we just HAVE to! (sorry but we know some of you are getting this twice b/c of different 'groups' you're in) We just got back from the movie "FACING THE GIANTS" (White Bear Lake Theater) and it was fantastic!!!!!!!!!!! Please try and go soon before it's out of the theaters (may have to go this week)- there's a strong Christian message, football story-line but created in a way, if you're someone that doesn't like the game, you'll still love the movie. I laughed and cried and wanted to play ball again! Take whoever you can! If you want more information on this go to... Facing The Giants trailer Neat, neat story as to the making the movie...ie. All actors were volunteers, the head Georgia football coach is in it...etc.
Fearing Not! Michelle Backes (and Ron)
(PS: A little health update...I'm on week four of antibiotic treatment for Lyme disease and the symptoms have been significantly better since Weds.!!!!!! Yippee!!! Not sure what future course will be but know God is never late : ) Thanks for all your prayers!
I want all you Lynx players stateside, to let me know what you think via e-mail : ) !!!!!!!!!!
(6) 11/30/06 3 Months In - Overall Update (Medical, Physical, Spiritual)
I know it's been a couple of months since my last update so I wanted to scoot you all a quick note. First of all, thanks again for all your prayers and support! What a team of people that surrounded us - I'm more motivated than ever to help others in need b/c of how incredible it feels to be on the receiving end! Anyway, here's the update: Medically: I've been on antibiotics (and Nystatin - YEA no stomach problems!) since Sept and probably am 75 % symptom free. I have the last 25% to go (yes, prayer request!) I've had two 'Herx' reactions which are very significant in this process (basically original symptoms heighten as there is an increased number of bacteria being killed and high toxins released in body) so I go off antibiotics for three days or so, symptoms get better and then I go after those stealthy spirochetes again! (I write this with some detail as I can't tell you HOW MANY people have already been helped/treated by the sharing of this information - feel free to pass on to whomever!!!!!!!! (That's how I learned the most about this 'misdiagnosed' Lyme disease stuff. Quite the medical ordeal I must say.) I have to get liver counts etc. checked in a month or so and will have another Brain MRI in early spring (HUGE PRAYER request is that they will find nothing (ha) - you know what I mean!!! Sometimes the lesions repair themselves, sometimes they don't. I want them GONE!)
Physically/Mentally: I have had to wave the 'tired flag' sometimes and actually go to bed before 10 pm! This is not normal for us wired (not to be confused with weird) Wisconsin/Norski women. But I must say I can't complain a bit - I can exercise mildly, walk fine, think (although there is that brain fog that goes with Lyme disease where I often switch out the last word of a sentence with a similar word or don't quite finish a thought. It is weird to have your five year old say, "Mom, did you hear what you just said?" (fortunately God's given us a sense of humor and the kids and Ron are getting a kick out of it!)
I am so thankful we caught this quickly. Many ask, "are you sure its Lyme Disease?" I keep looking for validation (who wouldn't rather have that 'treatable' diagnosis than MS, ALS, Parkinson's, Chronic Fatigue/Fibromyalgia etc?? so I've really tried to keep emotion out of it (ya whatever! ha) and have found confirmation all over...the latest being yesterday... I saw our family doctor, gave her the update - as she's watching this unfold too, and point blank asked her, "Do YOU think this is Lyme Disease?" Without hesitation she said, "Yes I do, MS doesn't act like that or respond to the antibiotics etc..." YIPPEEEEE - this isn't from someone from the 'Lyme or MS Camp'.... someone neutral in the medical field! She said they are making a lot of headway with this disease...just a matter of time!
Spiritually: I don't even know where to start... God has held me up and kept me so strong and steady!!! I also am in a Beth Moore Bible Study "Believing God" - she doesn't mess around and the timing couldn't be better. I'll just leave you with part of our sermon in church on Sunday...(we just happen to be going through Job now !) Our wonderful pastor brought to life the 'little' conversation the Lord had back with Job after he questioned why he (Job) was suffering ??? Poor Job - talk about being put in your place!!! I loved it when our pastor said, "Imagine in Job 38:7 all the angels sitting on bleachers, cheering God on almost like we do when we see fireworks." He ended the sermon with this... "The lesson Job needed to learn is that God is God and we can trust Him. It is the most important lesson in the universe." If you want to read more on this check out Job 38-40:5 and you can peek ahead to Job 42 if you want to know the ending : ) Anyway, He has given me many reasons to trust so that's where I am...trusting.
Will let you know when I am symptom free! Meanwhile make it a fantastic Christmas season! Thanks again to you all for everything!
Michelle (and family)
(7) 2/27/07 7 Months In - Overall Update (Medical, Physical, Spiritual)
Yes, it has happened...You best sit down : )...I finally have my own e-mail. Please change your address books and if you don't mind, e-mail me a HELLO to my new address as there is no way I can enter all of yours. Does that sound lazy or what? Thank you very much!
I'll also send a little update since this is going out to everyone... * First and foremost... I'm a new aunt!!!!!!!!! *************** had a little boy on Feb. 18th. ************The name lives on! He's beautiful and...after such a cruddy health run the last 6 months, AND since I'm feeling a lot better, AND with our 2007 motto being "LIVE" - My daughter and I checked on some frequent flyer miles two days before scootin' on up to Anchorage to meet Little * in person (The whole trip cost us $10 - $5 a piece for ticket tax ) What a blessing that was! We got back Monday night with special memories forever...including moose running by us on the road, a tram ride to the top of a mountain and a new nephew - did I mention what a honey he is???? (The only negative is that's a hard homeschool fieldtrip to top and she's only seven! ha) * Health update...Lyme Report...I have to be close! The last symptoms just come and go on my face (unfortunately totally related to how much sleep I get : )( I did try and stay on my sleep schedule in Alaska for those of you wondering - ha) I just need to stay on my antibiodics four weeks after my last symptom is gone and then "I've officially won the battle with the spirocete bacteria!!!!!!!!!!!!!!!!!!!!!!!!!!!" I will be sending out a HUGE praise shout on that day!!! Interesting side note - the Attorney General of Connecticut, Richard Blumenthal, is bringing charges against the CDC (Center for Disease Control) and the IDSA (Infectious Disease Society of America) on behalf of all the misdiagnosed Lyme patients in his state. All other states are watching this one unfold - BIG STUFF!
Back Report....some of you may not know I blew my C6/C7 disc in January, with a little chunk landing in my C7 nerve canal. I didn't send out an e-mail as #1 I couldn't type and #2 who can believe it?????? I'm healthy for the first 35 years of life then WHAM BAMMMM! But...interestingly enough this was a wonderful (I can use that word now b/c I can obviously type : ) ) disguised blessing as laying flat on my back really helped me rest, which consequently, had a positive affect in my Lyme recovery! I had to smile many a time, as I lay facing the heavens, knowing God had full control of what was happening. Two cortizone shots later I'm healing nicely and hopefully my body will reabsorb the 'piece' - (although I've heard FOUR different opinions as to what actually happenes to that piece - what a pain in the neck! (joke there!) I've really been blessed with incredible doctors, therapists, chiropractors AND husband, kids, family and friends!!!
MRI Count???...we're at SEVEN since Sept as a family - yep, Ron snuck in a knee surgery in Dec. to clean up some much KNEE-ED torn meniscus! He's doing SWELL! hee
* Spiritual update - I'm more fired up than ever! God CAN be leaned on! I do not know how one can go through battles without the Lord. I've gotten to experience His provision, blessings, love, healing in ways I would have never seen without going through these rough times. I never lost JOY, as circumstances, even with my physical body, can't take that away! (Not to say I was always HAPPY - you try riding around, on your back, in a mini van with Ron driving : ) )
May you all be encouraged to go deeper in your faith - grit it out - ask the tough questions, read His Word, talk about spiritual things with each other, equip yourself for the next storm a comin' - cuz it is a comin' (hopefully it dodges some of us who have been blasted lately : ) - but the more we know the less we have to fear!
Thanks for all your support! Be HEALTHY in all ways!
(8) 7/03/07 Top Ten - General update
I know it's summer and people don't have a lot of time but several have asked how I'm doing (Thanks for asking) so here's a Top Ten quick (I'll try) health/Lyme update.
1) Not a day goes by that we're still not thankful to God that we found out it's Lyme Disease !
2) Right now I'm on the toughest drug thus far - "Flagyl" - its the only one that busts the cysts back to spirochetes so it's working, which is a good thing, but I'm feeling it. When the newly spun spirochetes are killed they're very mad, which helps explain the leg cramps in the middle of the night again (they go out kicking-ha) , full face tingling, fatigue and complete brain fog. Again, all confirmation that it's Lyme Disease and that I have do still have somewhat blonde hair! (These reactions are actually called "Herxheimer's" for you googlers...)
3) Asked my daughter to please get her 'helmet' off the kitchen counter...it was a 'cowboy hat!' Yep, lots of fun over here : )
4) Ron and kids have been fantastic and very helpful around the house - also looks like I get out of Pop Up Camper set up/take down this summer - hee hee hee
5) Found out I'm anemic now and haven't been at all since senior year in high school so looking into that. Might be why I didn't do Grandmas Marathon this summer - then again who am I kidding : )
6) Going to Ladysmith tomorrow with some Lyme Gurus to put on a little educational meeting. I know too much NOT to share - perhaps second most compelling info in my life at this time, next to the Gospel of course!!! I feel like Paul going back to the Romans - I want to share with my 'peeps'!
7) We're going to try and get the 'talk' on audio, so please pray I can string smooth sentences (ha) and we can communicate effectively. I hope to have CD's made from this to just hand out to whoever wants them. This would free up a lot of time for us all as many of you know someone who bla, bla, bla ... : )
8) Although a little 'zip' is missing (good thing I had extra!), I still have plenty of energy to do the Lynx ministry (inspired by my golfing, 90+ year old Aunt Dor) - fortunately after 8 years I have it down. Gals are awesome and they're really starting to click on the court now. Fun crew to watch. Many believers on the team/staff too!
9) Just spell checked this e-mail and my spelling of blonde came up as should be spelled blond. Yes, I was laughing hard as was looking up the word BLONDE in the hard cover dictionary!!! (pondering if I dare even share this with everyone). And now can laugh at you all - laughing at me, that I would even do such a thing (with my new highlights) because it says BOTH are right! There ya go ! Whew
10) And...for all you curious people, like my 5 year old Beau, "Lyme's is not contagious!" (he was so relieved : ) )
Thanks for all your support and prayers. Keep them coming! : )
Can't tell you how many people you and I have been able to help because we're getting the word out - keep talking about this! Knowledge IS power! 2007 is going to be a huge Lyme Disease Education year - its in all the papers already! Nothing to be scared of if you can get treated right away! Yikes I'm sounding like a commercial.
Be blessed and bask in His faithfulness! I AM!
(9) 1/24/08 Off Meds! - Feeling Great!
Hello Everyone !
I know it's been quite some time since my last Lyme update but I've just been praying, working the treatment plan, praying some more, and waiting until I could send this e-mail out.
As of Friday, and after 16 months of antibiotics, I'm done with all my meds!!! YEAH!!!! I still have the numb patch (still feels like day old play dough ) on my L cheek/face that has been there the whole time (fortunately for Ron it hasn't affected any of my ability to TALK ) but all other symptoms are GONE (fortunately again for Ron that means my ENERGY levels are back .) I am obviously very excited, very thankful and very anxious to build that immune system back up. So here's my "breakdown" (actually never even had a one - God has been so STRONG!) - so I'll rephrase- ummm... "breakout" (well, skin's been good too - ha.)..ok - "update!"
PHYSICALLY/MENTALLY: I am still somewhat guarded/cautious as I just need to wait and see how I do off antibiotics. Time will only tell if we've wiped out all of this 'stealthy' bacteria. What an amazing spirochete! WOW! My fatigue levels are now only directly related to being a Packer/Favre Fan and a homeschooling momma of a 6 & 8 year old. MOST of my 'brain fog' is now from trying to answer questions like (after discussing the earth's gravity, orbits etc) "So Mom, are the people living in China upside down then? " AND (this would be from Beau...) "Hey Mom, what's C + C? " "6, get it!" They're giving me a run already! Speaking of which, I've been able to run again and what a treat that is (that statement would probably shock my high school cross country coach - always preferred a ball )! This whole deal has made so many things SWEETER and really challenged me to live the 'thicker life!'
MEDICALLY: I need to let my liver take a break! My main focus is to detoxify and rebuild my immune system. Many of you have forwarded these to other people so this part is for them...Lyme Disease is the #1 public health threat in this part of the country! It'll be on everyone's radar in a couple years if it isn't already. I can't help but to encourage others to be their own health advocate! Every case is unique and I'm not in the camp at all that everything is Lyme Disease HOWEVER - it was in mine...
SPIRITUALLY: I don't even know how to really express what a ROCK God has been for me/us through this... Being thrown a 'curve ball' in life so often 'catches' us off guard, esp. when it 'breaks inside' (yes, my dad coached baseball coach for 30 years and is a pun master - runs in the fam -sorry that wasn't affected by Lyme - I will apologize ahead here). I'll keep this 'short' and try not to sound like I'm 'pitching' anything, but I've 'batted' it around in my head and can't 'manage' to keep it in - please allow me a 'second' to explain...
Although so many of us are 'hit' with 'pressure' situations, these 'pickles' have an incredible way of making you 'cut' to what's important. Many think that faith in God through Jesus is only for the weak and that believers are way 'out in left field!' Ohhhhh, from where do they get their JOY? PEACE? REST? Over the last year and a half it was often the only thing that 'center' ed me! I would have completely felt 'stranded' if I didn't TRUST He was in 'control.' Whether or not He was going to 'clean up' the bacterial infection was up to Him. If it 'mounds' up and 'strikes'again, He is still in 'control.' But it was impossible for me to ignore His 'signs' throughout. They were all over the 'park.' His 'timing' throughout this whole deal was incredible!
So often we try to 'change up' the plan and 'line up' things on our own. When we do this our faith often 'slides.' Satan is always trying to 'back hand' us and get us off 'base.' He is our main 'opponent', trying to make us 'foul' in every way! Pay attention to the 'warning track!' (I know these puns are 'dropping' fast soooo....)
Let me encourage you to... (Perhaps good 'spring training' for us all...) * 'Lead off' your days with talking to the Coach and have 'conferences' often throughout! * 'Dive' into the Word and 'snag' as much of it as you can! * 'Third,' 'Get off the bench' spiritually if you're on it - the game's already started !!!!! * 'Talk on the field' - we need our 'teammates!' Thanks to all of you who are 'supporters' - your prayers, calls and encouragement were amazing 'back up' for me! * Don't let busyness 'steal' important family time at 'home'! * and...Remember the 'sacrifice' He made!
'Grounded out' in Him!
HELPFUL WEBSITE/VIDEO LINKS
Hopefully some of these great, informational sites will help you 'put the pieces together' ; )
GREAT, INFORMATIONAL WEBSITES:
International Lyme and Associated Diseases Society (ILADS)
Lymenet - A national support resource for Lyme patients
The Lyme Disease Association
Minnesota Lyme Association
Igenex - Western Blot test Information
Michelle's Lyme Specialist - Dr. Crist
Animated Lyme Borrelia Video
Under Our Skin (Documentary-00:00/1:44:18)
(1) Don't Waste Your Cancer - John Piper
(2) Lyme Symptom Checklist - Dr. Joseph Burrascano (highlight and print)
(3) H-Plyori Article - BBC News
(4) Encouraging Christian Story (Feeling Under Fire ?)
(5) Western Blot Explanation - Dr. Charles Crist (EXCELLENT!)
(6) "HERX" Explanation (Jarisch-Herxheimer Reaction)
(7) Landmark Investigation of Lyme Disease Diagnosis and Treatment Guidelines(This is HUGE !)
Sneak Peek of article: (May, 2008)"My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists," said Blumenthal. "The IDSA's guideline panel improperly ignored, or minimized, consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science." ~ Connecticut Attorney General Blumenthal
(1) Don't Waste Your Cancer (... or any illness) - John Piper
Desiring God I write this on the eve of prostate surgery. I believe in God’s power to heal—by miracle and by medicine. I believe it is right and good to pray for both kinds of healing. Cancer is not wasted when it is healed by God. He gets the glory and that is why cancer exists. So not to pray for healing may waste your cancer. But healing is not God’s plan for everyone. And there are many other ways to waste your cancer. I am praying for myself and for you that we will not waste this pain.
1. You will waste your cancer if you do not believe it is designed for you by God. It will not do to say that God only uses our cancer but does not design it. What God permits, he permits for a reason. And that reason is his design. If God foresees molecular developments becoming cancer, he can stop it or not. If he does not, he has a purpose. Since he is infinitely wise, it is right to call this purpose a design. Satan is real and causes many pleasures and pains. But he is not ultimate. So when he strikes Job with boils (Job 2:7), Job attributes it ultimately to God (2:10) and the inspired writer agrees: “They . . . comforted him for all the evil that the LORD had brought upon him” (Job 42:11). If you don’t believe your cancer is designed for you by God, you will waste it.
2. You will waste your cancer if you believe it is a curse and not a gift. “There is therefore now no condemnation for those who are in Christ Jesus” (Romans 8:1). “Christ redeemed us from the curse of the law by becoming a curse for us” (Galatians 3:13). “There is no enchantment against Jacob, no divination against Israel” (Numbers 23:23). “The LORD God is a sun and shield; the LORD bestows favor and honor. No good thing does he withhold from those who walk uprightly” (Psalm 84:11).
3. You will waste your cancer if you seek comfort from your odds rather than from God. The design of God in your cancer is not to train you in the rationalistic, human calculation of odds. The world gets comfort from their odds. Not Christians. Some count their chariots (percentages of survival) and some count their horses (side effects of treatment), but we trust in the name of the LORD our God (Psalm 20:7). God’s design is clear from 2 Corinthians 1:9, “We felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.” The aim of God in your cancer (among a thousand other good things) is to knock props out from under our hearts so that we rely utterly on him.
4. You will waste your cancer if you refuse to think about death.We will all die, if Jesus postpones his return. Not to think about what it will be like to leave this life and meet God is folly. Ecclesiastes 7:2 says, “It is better to go to the house of mourning [a funeral] than to go to the house of feasting, for this is the end of all mankind, and the living will lay it to heart.” How can you lay it to heart if you won’t think about it? Psalm 90:12 says, “Teach us to number our days that we may get a heart of wisdom.” Numbering your days means thinking about how few there are and that they will end. How will you get a heart of wisdom if you refuse to think about this? What a waste, if we do not think about death.
5. You will waste your cancer if you think that “beating” cancer means staying alive rather than cherishing Christ.
Satan’s and God’s designs in your cancer are not the same. Satan designs to destroy your love for Christ. God designs to deepen your love for Christ. Cancer does not win if you die. It wins if you fail to cherish Christ. God’s design is to wean you off the breast of the world and feast you on the sufficiency of Christ. It is meant to help you say and feel, “I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord.” And to know that therefore, “To live is Christ, and to die is gain” (Philippians 3:8; 1:21).
6. You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God. It is not wrong to know about cancer. Ignorance is not a virtue. But the lure to know more and more and the lack of zeal to know God more and more is symptomatic of unbelief. Cancer is meant to waken us to the reality of God. It is meant to put feeling and force behind the command, “Let us know; let us press on to know the LORD” (Hosea 6:3). It is meant to waken us to the truth of Daniel 11:32, “The people who know their God shall stand firm and take action.” It is meant to make unshakable, indestructible oak trees out of us: “His delight is in the law of the LORD, and on his law he meditates day and night. He is like a tree planted by streams of water that yields its fruit in its season, and its leaf does not wither. In all that he does, he prospers” (Psalm 1:2). What a waste of cancer if we read day and night about cancer and not about God.
7. You will waste your cancer if you let it drive you into solitude instead of deepen your relationships with manifest affection. When Epaphroditus brought the gifts to Paul sent by the Philippian church he became ill and almost died. Paul tells the Philippians, “He has been longing for you all and has been distressed because you heard that he was ill” (Philippians 2:26-27). What an amazing response! It does not say they were distressed that he was ill, but that he was distressed because they heard he was ill. That is the kind of heart God is aiming to create with cancer: a deeply affectionate, caring heart for people. Don’t waste your cancer by retreating into yourself.
8. You will waste your cancer if you grieve as those who have no hope.
Paul used this phrase in relation to those whose loved ones had died: “We do not want you to be uninformed, brothers, about those who are asleep, that you may not grieve as others do who have no hope” (1 Thessalonians 4:13). There is a grief at death. Even for the believer who dies, there is temporary loss—loss of body, and loss of loved ones here, and loss of earthly ministry. But the grief is different—it is permeated with hope. “We would rather be away from the body and at home with the Lord” (2 Corinthians 5:8). Don’t waste your cancer grieving as those who don’t have this hope.
9. You will waste your cancer if you treat sin as casually as before. Are your besetting sins as attractive as they were before you had cancer? If so you are wasting your cancer. Cancer is designed to destroy the appetite for sin. Pride, greed, lust, hatred, unforgiveness, impatience, laziness, procrastination—all these are the adversaries that cancer is meant to attack. Don’t just think of battling against cancer. Also think of battling with cancer. All these things are worse enemies than cancer. Don’t waste the power of cancer to crush these foes. Let the presence of eternity make the sins of time look as futile as they really are. “What does it profit a man if he gains the whole world and loses or forfeits himself?” (Luke 9:25).
10. You will waste your cancer if you fail to use it as a means of witness to the truth and glory of Christ. Christians are never anywhere by divine accident. There are reasons for why we wind up where we do. Consider what Jesus said about painful, unplanned circumstances: “They will lay their hands on you and persecute you, delivering you up to the synagogues and prisons, and you will be brought before kings and governors for my name’s sake. This will be your opportunity to bear witness” (Luke 21:12 -13). So it is with cancer. This will be an opportunity to bear witness. Christ is infinitely worthy. Here is a golden opportunity to show that he is worth more than life. Don’t waste it. Remember you are not left alone. You will have the help you need. “My God will supply every need of yours according to his riches in glory in Christ Jesus” (Philippians 4:19).________________________________________John Piper has been the Pastor for Preaching at Bethlehem Baptist Church in Minneapolis, Minnesota, since 1980. He has authored numerous best-selling books, including The Passion of Jesus Christ, Don't Waste Your Life and Desiring God. You will find 25 years of online sermons, articles and other God-centered resources from the ministry of John Piper at www.desiringgod.org. He also has a daily radio program, called "Desiring God," which can be accessed online at www.desiringGod.org/radio.
(2) * Checklist courtesy of Dr. Joseph Burrascano
NEW PATIENT- SYMPTOM CHECKLIST, PG 1
NAME ______________________________________ DATE__________________________________HAVE YOU HAD ANY OF THE FOLLOWING IN RELATION TO THIS ILLNESS?Tick bite- No Yes“EM” rash (discrete circle)- No YesSpotted rash over large area- No YesLinear, red streaks- No YesRISK PROFILE (PLEASE CHECK)Tick infested area__ Frequent outdoor activities__ Hiking__ Fishing__ Camping__Gardening__ Hunting__ Ticks noted on pets__ Other household members with Lyme__Have you had any of the following? CIRCLE ALL YES ANSWERS
1. Unexplained fevers, sweats, chills, or flushing2. Unexplained weight change (loss or gain — circle one)3. Fatigue, tiredness, poor stamina4. Unexplained hair loss5. Swollen glands: list areas _______________________________________________6. Sore throat7. Testicular pain/pelvic pain8. Unexplained menstrual irregularity9. Unexplained milk production; breast pain10. Irritable bladder or bladder dysfunction11. Sexual dysfunction or loss of libido12. Upset stomach or abdominal pain13. Change in bowel function (constipation, diarrhea)14. Chest pain or rib soreness15. Shortness of breath, cough16. Heart palpitations, pulse skips, heart block17. Any history of a heart murmur or valve prolapse?18. Joint pain or swelling: list joints _________________________________________________19. Stiffness of the joints or back20. Muscle pain or cramps21. Twitching of the face or other muscles22. Headache23. Neck creaks and cracks, neck stiffness, neck pain24. Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity25. Facial paralysis (Bell's Palsy)26. Eyes/Vision: double, blurry, increased floaters, light sensitivity27. Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity28. Increased motion sickness, vertigo, poor balance29. Lightheadedness, wooziness, unavoidable need to sit or lie down30. Tremor31. Confusion, difficulty in thinking32. Difficulty with concentration, reading33. Forgetfulness, poor short term memory, poor attention, problem absorbing new information34. Disorientation: getting lost, going to wrong places35. Difficulty with speech or writing; word or name block36. Mood swings, irritability, depression37. Disturbed sleep — too much, too little, fractionated, early awakening38. Exaggerated symptoms or worse hangover from alcohol
Ticks can also transmit several serious co-infections:--Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.--Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.--Bartonella is also known as cat scratch fever and has recently been attributed to tick transmissionMany people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later.
(3) Story from BBC NEWS:
Nobel For Stomach Ulcer Discovery
Two Australian scientists have been awarded the Nobel prize for medicine for their discovery that stomach ulcers can be caused by a bacterial infection. Robin Warren and Barry Marshall showed the bacterium Helicobacter pylori plays a key role in the development of both stomach and intestinal ulcers. Thanks to their work these ulcers are often no longer a long-term, frequently disabling problem. They can now be cured with a short-term course of drugs and antibiotics. In 1982, when H. pylori was discovered by Dr Marshall and Dr Warren, stress and lifestyle were considered the major causes of stomach and intestinal ulcers.
HELICOBACTER PYLORIH. pylori is found in the stomach of about 50% of all humans. In developing countries almost everyone is infected. Infection is typically contracted in early childhood, and the bacteria may remain in the stomach for life. In most people there are no symptoms. However, it can trigger ulcers in 10-15% of those infected. It is now firmly established that the bacterium causes more than 90% of duodenal (intestinal) ulcers and up to 80% of gastric (stomach) ulcers.
Dr Warren, a pathologist from Perth, paved the way for the breakthrough when he discovered that small curved bacteria colonised the lower part of the stomach in about 50% of patients from which biopsies had been taken.
He also made the crucial observation that signs of inflammation were always present in the stomach lining close to where the bacteria were seen. Dr Marshall became interested in the findings and together they initiated a study of biopsies from 100 patients.
After several attempts, Dr Marshall succeeded in cultivating a hitherto unknown bacterial species - H. pylori - from several of these biopsies. Together they found that the organism was present in almost all patients with gastric inflammation, duodenal ulcer or gastric ulcer. Even though stomach ulcers could be healed by inhibiting gastric acid production, they frequently relapsed, since bacteria and chronic inflammation of the stomach remained.
Dr Marshall and Dr Warren showed patients could only be properly cured when H. pylori was eradicated from the stomach.
"The work produced one of the most radical and important changes in the last 50 years in the perception of a medical condition." Lord May of Oxford Dr Marshall proved that H. pylori caused gastic inflammation by deliberately infecting himself with the bacterium. The Nobel citation praises the doctors for their tenacity, and willingness to challenge prevailing dogmas.
"By using technologies generally available they made an irrefutable case that the bacterium H. pylori is causing disease. By culturing the bacteria they made them amenable to scientific study."It is thought that H. pylori infection can trigger an ulcer by stimulating increased acid production in the stomach, leading to damage to the stomach or intestinal lining.
Lord May of Oxford, President of the Royal Society, said: "The work by Barry Marshall and Robin Warren produced one of the most radical and important changes in the last 50 years in the perception of a medical condition. "
"Their results led to the recognition that gastric disorders are infectious diseases, and overturned the previous view that they were physiological illnesses."
(4) Feeling Under Fire ?
Malachi 3:3 says:"He will sit as a refiner and purifier of silver."
This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God. One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study.
That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.
The woman thought about God holding us in such a hot spot; then she thought again about the verse that says: "He sits as a refiner and purifier of silver."She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed. The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?"
He smiled at her and answered, "Oh, that's easy -- when I see my image in it."If today you are feeling the heat of the fire, remember that God has his eye on you and will keep watching you until He sees His image in you.
(5) Western Blot Explanation - Dr. Charles Crist
Posting this, written by Dr C of Missouri for the benefit of everyone. This was written around 1999 or 2000. There is an updated version below.
Please note that "equivocal" is the same thing as "IND" or "indeterminate." -------------------------------------------------Explaining Borreliosis (Lyme) Western Blot Tests
The Western blot is a type of test that is conducted for detection of borreliosis (Lyme), but is also used to test for infections other than borreliosis.
Borreliosis is a more accurate name than Lyme disease for this infection. Several different Borrelia may cause a similar clinical pattern in this disease.
Old Lyme is a town in Connecticut, not a disease. Borreliosis is the name that should be used.There is no universal agreement on what defines a positive Western blot.
Good laboratories use different criteria to interpret borreliosis blots. At the 1999 international borreliosis and tick-borne infection conference, Sam D****, M.D. lectured.
Dr. D**** is a full professor of Infectious Disease at Boston University School of Medicine. He said that if a patient has just one borreliosis-associated antibody on their Western blot, you may assume they have borreliosis. Richard H*****, M.D. said the same thing in his lecture, at that same conference.
Research I presented in 1998 involving over 400 borreliosis patients, showed an 87% response rate to antibiotics. This was if they had one borreliosis-associated antibody on their blot.So if there is enough suspicion that Lyme borreliosis is the cause of a patient's symptoms, so much so that a Western blot is ordered, then if only one borreliosis-associated antibody is found, it is significant!
Medical literature is replete with statements about false positive test results for Lyme borreliosis. Since 1988, I have diagnosed and treated well over 600 borreliosis patients. Only 2 of those patients with a positive borreliosis test did not respond to antibiotics. This is a 99% success rate!
So in the trenches of day-to-day medical practice, false positive borreliosis tests are not an issue. In retrospect, those 2 patients that did not respond to antibiotics may have also had babesiosis.In my practice, many borreliosis patients also have babesiosis, another tick-borne infection that causes the same symptoms as Lyme borreliosis.
Babesiosis is caused by a protozoa, which is a different germ type than a bacteria, virus, fungus or yeast.
The placebo effect would not explain a 99% response rate. Those borreliosis associated antibodies should not be there, in patients with symptoms.
A placebo is like a sugar pill, that has no effect. A placebo effect occurs because patients believe in the pill they are taking, even though it is a sugar pill. The human mind causes the response.
Placebo effects should more likely be about 20-30%, not a 99% response rate.
False negative test results are the real problem in diagnosing borreliosis. Research has shown that you have to do the right test (the Western blot), done at the right laboratory (one that specializes in testing borreliosis), and done the correct way (shipped express delivery early in the week).
The right test to screen for borreliosis is the Western blot. Research I presented in Bologna, Italy in 1994 at the international borreliosis conference showed this.
Other screening tests, such as the IFA, EIA, ELISA, and PCR DNA probe were often negative when the Western Blot was positive!
Other doctors like myself who diagnose and treat a lot of borreliosis patients, go straight to the Western blot as their screening test.
Medical articles abound stating that it is best to do a screening test, such as an ELISA, and if it is positive, then confirm it with a Western blot.
But the ELISA is often negative when the Western blot is positive so, the right test is the Western blot. It lets you see exactly which antibodies are present. The "right laboratory" means one that specializes in borreliosis testing.
In the past, I have done head to head comparisons with 3 different regular labs. Western blots were drawn and sent on the same day to 2 different labs. The labs that specialize in borreliosis testing typically found borrelia-associated antibodies, that the regular laboratories missed.
If these specialty labs find a borrelia antibody, I trust it to be significant, because patients respond to antibiotics.
You get what you pay for, so use a lab that specializes in borreliosis. The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week.Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.
The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done.
This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens.
Western blots look for antibodies. These antibodies are made by your immune system. In this case, the antibodies are made to fight against different parts of the Lyme bacteria, which is called Borrelia burgdorferi, and other Borrelia species.
In other words, your immune system does not make one big antibody against the whole bacteria. So, when you see a number on a borreliosis Western blot, it corresponds to a specific part of the bacteria.
Compare it to the old story of different blind people touching an elephant. Based on the part of the elephant each one touched, each person had their own perception. Likewise, the antibodies attach to different and specific parts of Borrelia burgdorferi.
Numbers on Western blots correspond to weights. Kilodaltons (kDa) are the units used for these microscopic weights. Think of it like pounds or ounces. An 18 kDa antibody weighs 18 kilodaltons.To do a Western blot, thin gel strips are impregnated with the various parts of Borrelia burgdorferi. Each of the numbers, 18 through 93, on the test result form, is a part of the bacteria.
Blood is made up of red blood cells and serum; Spinning blood in a centrifuge separates serum from red blood cells and other things, like white blood cells and platelets.
Serum contains antibodies made by the immune system. Electricity is used to push the serum through the thin gel strips for the Western blot.
If there are any antibodies against parts of Borrelia burgdorferi present in your serum, and these parts are impregnated on the strip, the antibody will complex (bind) to that part.
When antibodies form a complex, it is called an antigen-antibody complex. Anything foreign in the body is an antigen, such as a ragweed pollen particle, germ, cancer, and even a splinter.In the case of borreliosis, the various parts of Borrelia burgdorferi are all antigens. Though each antigen is different, they all come from the same bacteria. So all the numbers that are positive on the test report are due to antigen-antibody complexes.
If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. - Band intensity reflects how dark or wide it is. Controversy exists about band intensity.Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases.
As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics.
Sometimes multiple antibiotics have to be tried before the patient feels better. Antibiotics may actually help with the laboratory diagnosis. But patients need to be off antibiotics about 10 to 14 days before the Western blot is repeated. This sounds like a contradiction.
Antibiotics may help convert the test to positive, but patients need to be off antibiotics when the specimen is drawn.
It is well documented in medical literature that the presence of antibiotics may cause false negative borreliosis testing. Therefore, your system should be free of all antibiotics for an accurate blot result.When the Lyme borrelia are alive, they are geniuses at avoiding the immune system. They may do things like go inside your white blood cells, and come out enclosed by the cell membrane of your own white blood cells! This may partly explain why antibodies against Borrelia burgdorferi are often not found when patients are tested.
What may happen when patients are given 4 weeks of tetracycline (or other antibiotics) is that some of the bacteria die. When Borrelia burgdorferi dies, it is less efficient at avoiding the immune system.That's when antibodies may be formed against Borrelia burgdorferi, converting the negative or equivocal Western blot to positive, in about 36% of cases.
If a borreliosis Western blot is going to be positive, it is usually the first one that is positive. The second blot is the next most likely to be positive, and so on, until the fifth blot.
After that, the curve levels off for conversion to positive. This is based on research I presented in Bologna, Italy in 1994. Some patients had borrelia-associated antibodies finally show on their tenth Western blot! Two Western blots from a reliable lab usually gives the answer.
If a third test is needed, a Lyme Urine Antigen Test (LUAT) is done instead of a third Western blot. Positive LUATs correspond very highly to patients getting better with antibiotics.
False positive LUATs have not been a problem in my practice. The LUAT finds the actual antigen (Borrelia burgdorferi itself), so arguably it should be the test of choice, but the Western blot is rn6re widely accepted, even though it looks for the antibodies against Borrelia burgdorferi.
The presence of antibodies are indirect evidence of an infection, not direct evidence like shown in the LUAT. On the Western blot test result form, please note what is "considered positive" and "considered equivocal." Equivocal is another way of saying suspicious or almost positive.
Below this are the ASTPHLD/CDC recommendations. The CDC stands for the Center for Disease Control. I have been in attendance at the international borreliosis conferences when the CDC said their recommendations are for disease surveillance, not day-to-day clinical medical practice. I am not in the business of disease surveillance.
My job is to try to help sick people.
The CDC recommendations do not include the 31 and 34 Kda bands of the blot test. These two bands correspond to outer surface proteins A and B respectively (ospA and ospB).In the world of borreliosis, these are two of the classic hallmark Lyme antibodies. But the CDC does not even have them in their recommendations.
You may see why I and other borreliosis clinicians do not agree with using the CDC criteria in everyday medical practice. Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands.
These bands may be produced by Borrelia burgdorferi, but are not nearly as specifically associated with Lyme borreliosis as the starred bands. These starred bands are classic hallmark borrelia-associated antigen-antibody complexes.
An example of the CDC's criteria of a blot test, is if a patient has the band pattern of 41, 45, 58, 66, and 93, the CDC would call it positive. But if a patient has a 23-25, 31, 34, and 39 band pattern, they would call it negative.
This is despite the fact that this second pattern of antigen-antibody complex bands is much more specifically associated with Borrelia burgdorferi than the first pattern.
As you can see, borreliosis is very controversial. It would be alarming if I was the only clinician who thought that the CDC recommendations should not be used for day-to day medical practice.Many borrelia clinicians do not use the CDC criteria. This is obvious by the fact that the IgX laboratory uses different criteria for positive. Again, in my opinion and others', even one borrelia-associated antibody is significant, if symptoms exist.
The classic triad of symptoms for borreliosis is fatigue (tiredness, exhaustion), musculoskeletal pain (joints, muscles, back, neck, headache), and cognitive problems (memory loss, trouble concentrating, difficulty remembering what you read, depression, disorientation, getting lost).But there are about 100 symptoms on the borreliosis questionnaire I use. Borreliosis may mimic or imitate virtually any disease.
Patients often tell me that other physicians they have seen use the CDC recommendations. This is unfortunate, in my opinion, since these physicians are not in the business of disease surveillance, like the CDC is.
But I am biased. After seeing patients with borreliosis since 1988, attending many conferences, talking with experts, and doing research on borreliosis testing, there is absolutely no question in my mind that physicians need to not blindly accept any recommendations.
One of my hopes is that doctors will someday realize that this controversy is a signal for them to search for the truth. Why is there such conflict in this very "political" disease if there is not substance for disagreement? Both IgG and IgM Western blots should be done for borreliosis.
With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM. In regard to the outer surface proteins, think of it like the skin of a human.
On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C.
The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.
18: An outer surface protein.22: Possibly a variant of outer surface protein C.23-25: Outer surface protein C (osp C).28: An outer surface protein.30: Possibly a variant of outer surface protein A.31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.58: Heat shock protein.66: Heat shock protein. This is the second most common borrelia antibody.73: Heat shock protein.83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.93: The DNA or genetic material of Borrelia burgdorferi.In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).
At the international borreliosis conference in Vancouver, British Columbia, I asked her personally about the 30 kDa band. She told me it was the same as the 31 kDa band (osp A).
When you have the opportunity to talk to borreliosis experts, this helps in assigning significance to findings, on an imperfect test. As a medical doctor, I am stating all of this with no axe to grind, no professorship to protect, and no preset opinions. Patients, personal research, and conferences have helped me interpret the borreliosis medical literature in regard to testing.
Nobody would like to have available a bullet-proof, 100% reliable Lyme borreliosis test more than I would. But we must use what is currently available. I always welcome second opinions.----------------------------------Here is his update written sometime around 2005.
When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have Lyme borreliosis and the testing is stopped right there.Screening tests that are positive are often followed by a test called the Western blot. The blot is a “confirmatory” test, as opposed to a screening test.
(Blots are performed for other infection -- it is a type of test, not a test uniquely for the Lyme bacteria.)
Western blots are accomplished by breaking the Borrelia burgdorferi into pieces, and those parts of the Lyme bacteria are then embedded in a gel.
Electricity is used to push antibodies made by the immune system through the gel. Antibodies that are made to attach to certain parts of the Lyme bacteria will bind to those exact parts that are embedded in the gel.
When the antibodies bind to the parts of the bacteria, a black band is formed, which is then interpreted as +/-, +, ++ or +++ depending upon the intensity or darkness of the band.Each part of the Lyme bacteria weighs a certain amount. For example, the tail of the Lyme bacteria weighs 41 kilodaltons (kDa).
Think of kilodaltons like pounds, ounces or kilograms. The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons.The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.It’s important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive.
I presented research that supported this at the 1994 International Lyme Borreliosis Conference held in Bologna, Italy.
For this reason I believe the screening tests are practically worthless, and is why I use the Western blot to “screen” for borreliosis, even though it is a “confirmatory” test.
Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients false positive blot results occurred in only three percent of them, based upon research I presented at the 2000 International Lyme Borreliosis conference.
Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the Lyme bacteria, then there was a 97 percent chance they would feel better with antibiotics.
Consequently, I tell my patients not to worry if the laboratory interpretation is “negative” or “equivocal,” if they have antibodies that are significantly associated with Borrelia burgdorferi.One thing doctors are taught in medical schools is to treat the patient, not the test result.
If someone has chronic pain, fatigue, cognitive problems, blurry vision and/or neurological problems, and also has a significant antibody on a borreliosis Western blot, that antibody should not be ignored in my opinion, even if the ‘official’ interpretation is negative or equivocal.
Remember, antibodies are very specific to what they bind, and borreliosis may cause virtually any symptom and any disease.
Disease surveillance is close observation of a group of patients with the same disease, and it is one of the jobs of the Centers for Disease Control (CDC).
Criteria used for disease surveillance is often different than criteria used to diagnose and treat patients. In my opinion, surveillance criteria should not be used in day-to-day clinical medical practice.
Unfortunately, many patients are told they do not have borreliosis because they do not meet CDC’s surveillance criteria.
Surveillance criteria exclude some of the classic hallmark antibodies, such as the 31 kDa band (outer surface protein A or ospA) and the 34 kDa band (outer surface protein B or ospB).
In fact, the 31 kDa band is so tightly associated with Lyme borreliosis that a vaccine was made from that outer surface protein.
In other words, I believe that criteria that exclude the ospA (31 kDa) band should not be used to tell a patient they do not have Lyme borreliosis.
Common sense should tell anyone that prevalent antibodies like the 31 dKa and 34 dKa should be included in the criteria, not excluded.
(Remember, research supports that if just one antibody that is significantly associated with Borrelia burgdorferi is present on a Western blot, 97 percent of those patients with chronic symptoms or chronic diseases feel better with antibiotics.)
Same day head-to-head comparisons of borreliosis Western blot results revealed that reference laboratories do a better job of finding antibodies against Borrelia burgdorferi than regular laboratories.
This raised the obvious concern that the reference labs might be overdiagnosing patients with borreliosis.
That is one of the reasons why I researched those 700 patients. However, the false positive rate was just three percent. In my opinion, reference laboratories do not over-diagnose borreliosis.False negative test results, on the other hand, are a much bigger problem, in my experience. Negative Western blots convert to positive in 18 to 24 percent of cases, if four weeks of antibiotics are given, and then the patients go off antibiotics for 10 to 14 days before the repeat Western blots are done.
In other words, a false negative Western blot converts to positive in about one out of five borreliosis patients. This is a much greater problem than a false positive rate of only three percent.Coinfection testing may depend upon where you live on planet earth. I talked to one medical doctor from New England that was concerned about getting too many positive test results for bartonellosis (cat scratch disease).
This physician was concerned about false positives. Yet I have not had a single positive yet.Research by Greg McDonald, Ph.D. has shown that there is a different borrelia in the Midwestern U.S.A. When Dr. McDonald used a PCR primer that would amplify any strain of borrelia, he obtained positives from biopsies of bulls-eye rashes caused by tick bites in patients from Missouri and nearby states.
However, if Dr. McDonald narrowed the PCR primers to amplify only Borrelia burgdorferi, Borrelia lonestari or Borrelia andersoni, the results were negative.
In other words, the Midwest has a different borrelia. It has been referred to as Borrelia “confusiosis,” but one of these years when it is finally characterized fully, this Midwestern borrelia will probably be known as Borrelia mastersi, in honor of Edwin Jordan Masters, M.D. and his extensive research.Pathologists who use a microscope to examine bulls-eye rash biopsy specimens from Midwestern patients observe significant and consistent differences when compared to biopsies from New England patients.
The diseases and their rashes are similar, but there are definite differences. This is why borreliosis or Master’s disease is a better term than Lyme disease.
Another feature of Midwestern borreliosis is the inability to grow Borrelia burgdorferi from patients with Lyme borreliosis. In New England about five percent of cultures grow Borrelia burgdorferi from borreliosis patients.
There are other borrelia* that cannot be grown in culture media. The bacteria that causes syphilis has never been grown in culture media, even though this infection has been known and studied for several generations.
It should not be surprising that the Midwestern borrelia cannot be grown in culture media yet. When it is, knowledge of this infection will increase tremendously.
James Oliver, PhD, who is a very highly respected entomologist, has successfully cultured Borrelia burgdorferi from over 60 ticks collected in Missouri.
Why human cultures are negative and tick cultures are positive remains a mystery. Still, there is no question but that there is a Midwestern borreliosis.
The same is true for co-infections. The babesia in Missouri is called MO-1. It is a different babesia. There are different ehrlichia.
It would appear there is a different bartonella. When you have different strains of germs, the test results may be falsely negative.
To protect patients’ pocketbooks, I rarely test for tick-borne coinfections. If the tests were reliable I would be more inclined to order more. In general, when potential coinfections are targeted with antibiotics, most patients get better.
At least three possibilities exist to explain patients feeling better with antibiotics. It could be that an antibiotic that targets a potential coinfection such as babesiosis may actually be killing the Lyme bacteria as well.
Or it may be that a negative test for a coinfection was falsely negative. And finally, there may be some unknown germ that the patient has that responds to the antibiotic.
I tell my patients that regardless of why the antibiotics help most borreliosis patients, the benefits of antibiotics outweigh the risks.
My greatest concern is untreated borreliosis, not the potential side effects of antibiotics that target tick-borne infections.
Specimens for borreliosis Western blot testing should always be express-mailed to the laboratory. Antibodies against the Lyme bacteria can clump or bind together and give a false negative test result.Express-mailing specimens lessens the time in which this could happen, which in turn increases test accuracy.
If your specimen sits around for several days (or if a screening test is ordered instead of a Western blot, or if a regular lab is used instead of a reference lab) then you might be given a false negative test result, which in turn could result in a false sense of security.Testing in my office consists of a Western blot that is express-mailed to a borreliosis reference laboratory.
(6) "HERX" Brief Explanation (Jarisch-Herxheimer Reaction)A Herxheimer response (nicknamed 'Herx') is a temporary worsening of symptoms during the course of an antibiotic regimen.
¤ Why it happens: As antibiotics kill germs, the germs (such as bacteria) die and they release their toxins. While you may feel terrible, a Herxheimer Response is actually quite a good sign that your treatment is working.
¤ What this means for you: Upon beginning treatment, you may (temporarily) feel markedly worse having heightened symptoms. Some patients Herx only a few times, while others experience it, with lessening severity, for the entire course of treatment.
¤ How to deal with it: Pay attention to your body! You'll be amazed at how in tune you will be with it. I (and thousands of other patients) found it to be effective to NOT fight through a HERX but rather go off the antibiotics for a couple days until symptoms lessened. (Even if it was a mild HERX I went off.) I really focused on resting and flushing toxins those days 'off' and only then did I resume treatment.(FYI - Flagyl was the worst antibiotic for me so my advice is to start slow on that one!)The worse the HERX, the better it WORX!
(7) Landmark Investigation of Lyme Disease Diagnosis and Treatment Guidelines (IDSA) !*Settlement Announced in Landmark Investigation of Lyme Disease Diagnosis and Treatment Guidelines*
Patients' Rights Groups Applaud Connecticut Attorney General Blumenthal's Settlement in Anti-trust Case Against Powerful Medical Society*Hartford, CT*, *May 1, 2008* --
Patients' rights groups today hailed Connecticut Attorney General Blumenthal's announcement of a settlement in a landmark antitrust investigation into the Lyme treatment guidelines of the Infectious Diseases Society of America (IDSA).
"My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists," said Blumenthal. "The IDSA's guideline panel improperly ignored, or minimized, consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science."
The groundbreaking settlement announced today forces a complete reviewof the IDSA guidelines by a new panel free from conflicts of interest, specifically excluding previous panel members. This panel will consider a range of scientific evidence in a public forum broadcast live over the internet and will be overseen by a specialist in financial conflicts of interest in medicine."This settlement makes it clear that the IDSA guideline development process was corrupted by a commercially driven panel that excluded evidence supporting longer term treatment of Lyme disease," said attorney Lorraine Johnson, Executive Director of the California Lyme Disease Association (CALDA). "This settlement allows suppressed scientific viewpoints and evidence to be heard, and it is promising news for patients."
This is the first-ever antitrust investigation against a medical society's guidelines development process.
"We congratulate Attorney General Blumenthal for exposing the IDSA's conflicts of interest and helping reduce the suffering of Lyme patients everywhere," said Pat Smith, president of the national Lyme Disease Association (LDA). Diane Blanchard, co-president of Time for Lyme adds, "The IDSA guidelines are dangerous for patients who suffer longer-term Lyme symptoms that do not fall within the IDSA's narrow disease definition."
The IDSA guidelines are treated as mandatory within the medical community. More than 50 physicians who use longer-term treatment approaches have been investigated or sanctioned by state medical boards. The guidelines can also result in financial problems for patients, since insurance companies refuse to reimburse for longer-term treatment and pharmacies may refuse to fill prescriptions.
The majority of individuals involved in the IDSA guidelines development process held direct or indirect commercial interests related to Lyme vaccines, patents, and/or test kits, and did not take the opinions or experiences of the competing Lyme groups into account.
While the announcement of a settlement comes as a huge relief to suffering Lyme patients, the case has much broader implications for a health care system that often contends with conflicts-of- interest in guideline processes -- guidelines which are often used by insurance companies to limit diagnosis and treatment options.
"Today's settlement marks an important victory for all patients who suffer Lyme disease, but it is also a victory for anyone concerned about health care," said Johnson. "Commercially driven guidelines that limit patient treatment options are a major issue today in healthcare, and this decision marks an important step towards addressing it."
The national Lyme Disease Association, (LDA), CALDA, and Time for Lyme are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of education and support services available for this newly emerging infection.