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Lyme Disease and the Cunnigham Study


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Ok, I'm going to throw in my “two cents”...(and post this same response to two different threads going in the same direction)..

 

It is speculated that the band 41 is a cross-reactive band as Madeleine Cunningham confirmed this "speculation" during our phone conversation last week. I know Lyme is considered a "contributor" to many cases of PANDAS. It is of interest to the many great doctor and researchers who are trying to help our PANDAS children. Just like Lyme is an infectious agent that can cause an auto-immune disease like MS (my own personal battle) why is it so hard for some to comprehend/agree that Lyme can also contribute to PANDAS?

 

P.mom-it sounds like you went through h*ll and back trying to understand and treat what was inflicting you. I'm sorry you had to go through all of that and still struggle. Personally, trying to get my arms around this chronic nuero Lyme that I'm diagnosed with is difficult. I believe diagnosing and treating chronic Lyme is much more a mystery than PANDAS. I do want to reply regarding the bull's eye rash and tell you that according to the Lyme Research Center's website (Dr. Fallon) www.columbia-lyme.org says..

 

"In about 60-70% of cases, a rash may develop at the site of the tick bite. This rash is most often circular with a clear edge, but oblong and other shaped rashes may occur as well in response to the tick bite. This rash is known as erythema migrans or EM. This rash usually starts about 3-30 days after the tick bite. Sometimes this rash is mistaken as a “spider bite”. In about 18% of cases, the classic well known CDC clinical features of Lyme disease are not present. In these cases, the only symptoms may be marked fatigue and flu-like symptoms. Given that fatigue and flu-like symptoms may often arise from other causes, Lyme disease may not even be considered in the differential diagnosis and the patient may suffer for many months with an unrecognized, untreated infectious illness. Late Disseminated Lyme Disease. If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain). The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling.

 

I hope this information is helpful to you and others. This is an EXCELLENT website to get accurate information regarding Lyme. I love this forum when it offers friendly emotional support to others struggling but get discourage when folks start debating “known” medical/scientific information. Why don't we rely on the LLMD's and the many great websites like Dr. Fallons research center for the facts on Lyme and call it good! Unfortunately how Lyme plays a role in PANDAS and other auto-immune disorders is still very much unknown. I know without a doubt I have Lyme (and soon will probably have a MS diagnosis as well now that my MRI is complete). There is no absolute concrete research/scientific evidence that Lyme infection is one of the infectious agents that can cause MS B-U-T the Lyme docs will all tell you that they believe it to be true. They are learning from us going through this ordeal. It stinks that we are navigating mostly uncharted waters. We want clear answers for Lyme, MS, mycro, PANDAS etc..as how they relate to each other but we don’t have clear answers.

 

I think what has made SFmom/Wendy so successful with treating her children is the same formula we used in successfully treating Lauren. We thoroughly ruled out possible co-infections and treated the infection(s) FIRST (rather it be strep hiding in Lauren’s sinuses and/or treating the strep that infected our whole family). Using antibiotics and steroids we treated/weakened the chronic infection that caused Lauren to be so ill for the entire year (2009) and more than likely “contributed” to her blood brain barrier breach last fall (oct 2009) causing her extreme PANDAS manifestation/sneezing 25,000x a day. Once we “beat” this infection down in her (but maybe did not fully eradicate it) we went in with the IVIG to “hit the ball out of the park”. This is “why” I think my daughter is so well/functional (98%) now.

 

Do I think my daughter may have/had a Lyme infection as well-ABSOLUTLEY! We will ever know for sure because she had/has so many different antibiotics for so long not to mention 3 ivig’s-PROBABLY NOT! I’m ok with that. I believe Lauren’s BBB was due to many contributors, the “perfect storm” . I remember when we first started posting her in the beginning of our battle, it was Faith’s “badgering” me about the vaccines that Lauren recently had prior to her PANDAS manifestation that led me to believe that the vaccines were “one” of the “contributor’s to Lauren’s BBB along with the possibility of Lyme/H1N1/strep/stress and other factors. There were lab tests that ruled in/ruled out some “contributors/infections” but for the most part we were dealing with a “clinical diagnosis” and we believed in the doctors who believed this was PANDAS and followed their advice knowing that they are also learning as we are going along, doing the best that they can to help us. We worked together to get Lauren and know the rest of our family well.

 

Like Wendy/SFmom we will leave no stone unturned. Even though our children are functional due to the measures we have taken to get them there, we all know that for most of our PANDAS children, they were “normal” one minute and were “gone” the next. I’m not convinced that we have “won” this battle BECAUSE (I will say it one more time, again). UNTIL WE FULLY UINDERSTAND WHAT CAUSES PANDAS WE WILL NEVER UNDERSTAND HOW TO FULLY ERRADICATE IT (I stole that last phrase from Dr. B but he said I can have it because I like it so much)!!

 

Ok, now be nice with your comments, don’t be hatin’, this is only my “two cents”!

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Tell Buster I'm going to email him the demographics/density map comparing Lyme deaths and MS deaths-SCARY! You can layer the two on top of each other and they're are identical. Hmmmm...

 

 

At home (I don't think he posted it) Buster plotted against Lyme density (or whatever you call it), as well as against population density....he found that PANDAS cases correlated with population density...but not Lyme density. There are lots of PANDAS cases in the Northeast partly b/c there are lots of people living in the Northeast (I also suspect there are more educated parents/doctors diagnosing PANDAS in the Northeast who make it to this forum).

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My standard western blot/Elisa tests (three of them over the last 6 months) all came back negative (I was on 500mg of azith during the first two). The third western blot test (also negative) was drawn the SAME day as the IGENEX testing! momofgirls, you are "spot on" with yor explaination why so many are testing negative/CDC explinaton.

 

You GO girl! People need to understand (and should read the "Cure Unknown")! it explains a lot!

 

Yes check for lyme but check properly. My daughters western blot was negative twice when tested through quest. It was positive via igenex because the CDC has removed fingerprint bands from the western blot used by quest, lab corp etc...these bands were removed because a vaccine was in development. They knew if the bands remained on the basic western blot then anyone who received the vaccine would appear positive. Therefore a disclaimer was added to the bottom of the test stating that lyme is a clinical diagnosis and lab results alone are not enough to rule out lyme. It says something like that anyway. Igenex test includes the fingerprint bands for lyme.

I know its expensive but compared to the cost of psychiatric care and special tutors its worth it. I think if you start with just the igenex western blot it costs about $300.

 

 

Yes, it is an undetermined path... still..... but,perfectly reasonable to check for strep in a Tourettes/OCD case. I NEVER said not to check for Lyme....which is also an "undetermined path." I have said to check for it multiple times in my posts...my kids have been checked numerous times. But, it is easier to check for strep than Lyme. Some of these Lyme tests can really put a family out.

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So you say that one can say Lyme can aid in PANDAS but not all PANDAS cases are spurred by Lyme. Correct? Because I agree with that.

 

 

Just like Lyme is an infectious agent that can cause an auto-immune disease like MS (my own personal battle) why is it so hard for some to comprehend/agree that Lyme can also contribute to PANDAS?

 

Edited by Vickie
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Your right about the PCR test and needing to be off antibiotics but most PANDAS docs (including Dr. B) are now ordering the 6050 test (complete lyme panel). This panel tests for Western Blot pplus PCR testing so...if you are doing igenex testing and are on antibiotics or cannot go off anttibiotics than do test 4090 instead.

 

I might add the 4090 runs $260 and the 6050 is $485

 

We ran the 6050 complete test on the girls and wasted $225 (actually we will spend another $260 repeating the test) because they were/are both on high dose antibiotics, not to mention the results are considered invalid on the pcr :(

 

(Igenex will give you a 15% discount if are testing more than one family member at a time).

 

 

 

Madeleine Cunniham did tell me last week that Lyme does test in the CamK range. She is conducting futher research into this with other LLMD's. To be continued..

 

I also want to mention that when you call IGENEX lab they will tell you to NOT take the IGENEX testing while you are on antibitics! They suggest going off them for 10 days.

 

I just wanted to note I did call Igenex and also emailed them concerning being on antibiotics and was told when I called that as long as it was not urine or PCR test it would be fine. The email sent to me was this: The Western Blots, and IFAs are all ok .

 

Hope I have the right information, not planning on going off of antibiotics as it causes a backslide for us.

Edited by laurenjohnsonsmom
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OK, I spilled coffee on my keyboard this morning and have been unable to type :blink: I think a greater power is trying to tell me something. Again, by me making our story so public I subject our family to the criticism of others based on their personal perceptions..... I get that.

 

But every once in a while I do feel the need to defend myself and I consider the post about my statements of 100% mis-characterization of what I was trying to communicate previously.

 

Let me provide an example: I've been talking about my son being 98% better for a while. It is true, he suffers no OCD (for a while now) and no TICS (recent resolution) but about seven weeks ago my son did have a new issue crop up that I have eluded to in my posts. I'm a poop watcher and I have seen every color poop under the sun: green, yellow, aqua.... you get the picture. Well, one day I noticed a red/brown coloring to his poop that persisted and persisted and persisted. I prayed it would go away on its own. I consulted with our nutritionist and she said not to worry it would go away. I then began to notice that our son's belly was distended and I worried further. I consulted with our Pediatrician and he ran a stool sample for blood. Yes, it was blood in his stool. I re-consulted with our nutritionist and she said to to stay the course on our regimen and not worry she had witnessed this with previous clients. BUT, the red/brown stools continued and I worried more. I talked with many people privately and e-mailed with Dr. K regarding our sons most recent symptoms. I was encouraged to run further stool samples against our nutritionist advice and potentially scoop him for cysts, polyps or fissues. The results of the stools samples were no C. Dif, H Pylori, Giardia, E Coli.... I jumped for joy but the red/brown stools persisted. Then I worried more.... is it Colitis from all the antibiotics, Chrone's Celiac's, etc, etc, etc. We made the appointment with our LLMD to see if he could help solve this particular problem and close the gap on the last 2%. We went over everything with Dr. H and he prescribed a medication that acts as a cyst buster similar to flagyl. There was a two fold reason for that medication: to test for the DNA of Lyme in the urine and to potentially help with our most recent and remaining symptom of blood in our son's stool. I had also added Oil of Oregeano and Epicor to help if it was a Candida issue. Well I am happy to say with the addition of Oil of Oregeano, Epicor and Alinia 'cyst busting' antibiotic our problem is solved. I ask you...... should I have accepted him being 98% recovered? Was this irresponsible of me to treat our son with the additional antibiotic?

 

The point I was trying to make at the time was.... is a little OCD o.k., is little Mood Liability o.k., is a little TIC o.k.? Because 'I' believe those symptoms are the result of an infection and the auto-immune occurs because of the infection and until those symptoms are gone 'I' feel there is still an underlying infection. I have debated infection verses auto-immune several times, with many Dr.s (we have one in the family) and even on this forum. We are now seeing a Dr. who believes strongly that once the infection is gone the HYPER IMMUNE response stops and the child recovers. Please read all my posts with that underlying perspective in the future. I have chosen to hang my hat on that concept so regardless of blood in the poop or a little TIC the infection was still present in my mind and to keep treating and investigating. Others do not agree with this perspective and I am o.k. with that........

 

My intentions behind posting about LYME/co-infections were the following:

 

1. To potentially secure children help much, much closer to home with a Dr. that understands different bacterias, molds, viruses, allergies, vaccinations and all the capabilities of testing whatever the cause in advance if traveling to Chicago, DC and CT

2. For the children that were not doing well post IVIG to investigate further and to think about pursuing alternative antibiotics or multiple antibiotics and to consider testing not previously done

3. For the new individuals to the forum to set out with a potential list of tests that was broader based than ours was originally.

4. To understand the concept of Herxing

 

That was it.... Wendy

Edited by SF Mom
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I don't think anyone is suggesting one should ignore blood in the stool ;) I consider my son to be doing very well (I started out giving this a percent but honestly, I don't even know how people come up with a percent) and I am satisfied with where he is at but it doesn't mean if he gets a splinter I don't not remove it.

Edited by ajcire
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Again, the blood in the stool wasn't my point.... it was an example to correlate how 'I' feel about the symptoms of PANDAS/Lyme/Mycoplasma.

 

The TICs, OCD, Anxiety associated with PANDAS represents symptoms of an infection that needs to be treated like blood in the stool, a broken arm, a splinter in your finger. Not everybody on the forum feels that it is 'purely' an infection based disease. It really had nothing to do with how I felt about IVIG and our treatments we were pursuing at the time and why we were pursuing them or anyone else's treatment.

 

I agree about % and happy to say my son's symptoms are in remission/cured..... whatever.

Edited by SF Mom
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I agree. I think the little symptoms we see are the tip of the iceberg. Let me give you an example of how I was convinced of this.

Ds was doing pretty well on azith. Tics gone, OCD really only triggered by me straight a student. Some anxiety, but only what a mother would notice. I decided to follow thru on full battery of IQ tests, adhd evaluation, academic testing. It was very expensive and time consuming. I did it when he was doing well, what I thought was 90 percent or better. Same with his Cunningham tests. I wanted to test where he was on most days, not on his very worst day.

What we found was that while academically gifted in many areas, there is a specific skill his brain cannot perform. He has developed many ways to compensate. the anxiety that he may at anytime in an academic setting be asked to do something he is uncapable of alone is going to have many consequences. Academically, self esteem-wise, anxiety-wise.

The portion of the testing that ds could not do(he scored in bottom 2 percent of population) was a matching and copying task that combines spatial ability and fine motor. This is why he does not write anything down when doing math. He does it all in his head, not because he is so smart(what we thought) but because it is excruciatingly painful for him to perform a fine motor task while his brain is doing math.

Although the tests are designed to separate skills, it's virtually impossible. The fact that pandas has taken that from him, affects all the other scores as well, and the consider the whole IQ test invalid when there is that big of a delta to the next lowest score.

I never would have known this was going on, I could only see the tip of the iceberg...we basically found this by accident, we had started to discuss testing for giftedness prior to pandas because some odd academic stuff was going on. Then pandas hit, and decided to do it as he was getting better. I was shocked.

And I'm not the only one that has had this testing done with same finding!

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  • 1 month later...

I just returned from my daughter’s checkup with our LLMD, and I thought I’d pass along some information I learned while there as it relates to lyme disease and the Cunningham study. We see one of the better known LLMD’s, but I’m just going to refer to him here as Dr. X. Another LLMD was also present – I’ll refer to him as Dr. Z.

 

* Note: I’ll list out some of the more prominent notes: (and while I’m not on the board regularly, I do realize that people here are in regular contact with Dr. Cunningham and have posted some of this information. I’m absolutely not claiming to know details of the Cunningham study – I’m only relaying information as told to me by LLMD’s).

 

1. Previously, Dr. X has been working with one of the PANDAS docs on cases where it has been determined that lyme is a factor.

 

2. Dr. X then began contact with Dr. Cunningham (not sure who initiated). As has been posted here, Dr. Cunningham is well aware that lyme disease can create positive results in her test for the presence of anti-neuronal antibodies.

 

3. Dr. X and Dr. Z both reiterated the above: that there are various possible infectious agents that will cause a “positive” on the Cunningham test. The testing is for 4 anti-neuronal antibodies. Whether a person tests positive for one or more, in any combination, there is no way to know which infectious agent causes the autoimmune dysfunction. Only that the dysfunction has been caused.

 

4. Dr. X has now been having (past couple of months) the Cunningham test done on his lyme patients that most closely resemble the profile being studied by Cunningham: Neuro dysfunction with symptoms of movement disorders, OCD, behavioral symptoms, etc. Of these patients, over half have turned up “positive” to the presence of one or more anti-neuronal antibodies. Dr. Z is also going to start running the test for his patients.

 

5. LLMD’s have long been aware of the potential for lyme creating autoimmune dysfunction in patients. This can include such things as chron’s, autoimmune thyroid, etc.

When the underlying bacterial infection is cleared, many times the autoimmune dysfunction resolves itself. Sometimes not.

 

6. Dr. X&Z: You can have active lyme bacterial infection causing neuro symptoms (and NO autoimmune component). You can also have active lyme bacterial infections causing neuro symptoms, and also have an autoimmune component.

 

7. Dr. X&Z: You ABSOLUTELY have to properly treat the underlying bacterial infection to completion. If you have unresolved autoimmune component, perhaps IVIG is warranted.

 

8. Dr. X &Z: Without a doubt, many of the patients who believe they are only dealing with strep, are actually dealing with underlying lyme/related infections.

 

9. These LLMD’s are hopeful that if a patient gets a positive Cunningham test, then they will have better chance for insurance company to cover IVIG. (IVIG has long been used in lyme treatment when warranted).

 

10. That infectious agents may cause autoimmune neuro dysfunction is not new to LLMDs. However, the Cunningham study is of interest in that it is a test for actual, identified, anti-neuronal antibodies.

 

11. But also note, lyme bacteria alone – without an autoimmune component – can cause the identical neuro symptoms of movement disorder, OCD, behavioral, etc.

 

 

 

I just want to add my own reiteration that there is no typical PANDAS presentation that is any different from how the lyme bacteria (as opposed to the strep bacteria alone) brings on these symptoms.

 

Additionally, you can test positive for strep, and be reactive to strep, and STILL HAVE UNDERLYING LYME INFECTION.

 

***Unless you’ve had IGENEX testing done, and were examined by knowledgeable LLMD, you really can’t discount lyme.

 

 

I do not know to what extent the prominent docs studying neuro dysfunction --caused by strep and lyme and other – share information. (otherwise known at this point as PANDAS docs and LLMDs). I hope it continues to grow. Both Dr. X&Z mentioned, for instance, that Swedo has for some time acknowledged lyme in this equation.

 

IT NEEDS TO BE UNDER ONE UMBRELLA! The study of how an infectious agent results in neuro disorders (both caused by active infection and/or autoimmune component).

*I will post under the “New Lyme board” topic heading, but I really would hate to see the board divided up by which infectious agent causes the dysfunction. In many cases, people are carrying around multiple infections.

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