Does Pandas/Lyme go in cycles?

[Nick12]

Words can't express how awful we are doing. Working hard with our local doctor and meds to keep my 14 year old son from being hospitalized. No pandas believers there.

Completed our first and only ivig this summer followed by sumedrol. We are doing horribly. It has occurred to us that last October was just as bad (he was smaller and manageable then).

He has Pandas and tested for an old infection of bartonella. Do either of these go in cycles?

[rowingmom]

If infection is still active, IVIG does nothing to reduce bacterial load. Both the IVIG and steroids will temporarily reduce inflammation and antibody concentration (thus reducing symptoms), but are not a permanent fix. Steroids may actually facilitate bacterial growth because of it's supression of the immune system. The bacterial infections have to be properly addressed.

[Nick12]

Thank you. I have asked for a script to have labs done again to see what his levels are at this point. The solu medrol was clearly a mistake for us in many ways. Thank you.

[LNN]

Bartonella has a roughly 3 day life cycle, so while I'd definitely test for lyme via Igenex and possibly bartonella again, the annual October thing made me think of mold. Mold spikes in the fall, as falling leaves trap moisture, closed windows create a less aired-out environment....

 

I'm sorry you're struggling so much. My DS also tanked after IVIG and it was only afterward that we found lyme. He'd been tested via Quest Western Blot a few months prior to IVIG and was negative. A few months after IVIG (we waited 10 weeks to make sure donor antibodies weren't part of the picture), we tested via Igenex - many positive or indeterminate bands, including the ones most unique to lyme (31 and 34). So if there was one silver lining to our IVIG horror story, it was that maybe it made his immune system strong enough to produce antibodies and give us the test result we needed to get us on the right treatment path. In hindsight, I view the three months of post-IVIG H**L to be one long, unsupported herx.

 

So I'd think an Igenex test would be helpful and if your doctor is willing, consider some of the tests for inflammation and mold sensitivity listed here: http://www.survivingmold.com/diagnosis/lab-tests (the whole site is helpful)

[3bmom]

See if you can get him to start diet. Not the easiest if in flare. At least try removing dairy. Did you test for herpes virus? Dairy and valcyclovir would of kept my son out of the hospital. They just convinced him I was crazy and gave us more issues to deal with. I wonder about October too. It always slowly started up. My guess mold, strep and illness at school but I also think all the Halloween candy being offered contributed. Hang in there.

[Nick12]

The doctor is sending a script for lab work and honestly, I hope he finds something. Your responses have been super helpful. It was comforting to know I am not the only one that did IVIG and have not seen the improvement I hoped for. After reading these, I am thinking we did not keep my son on his antibiotics long enough. That would be our fault more than the doctor's.

I know many speak of herxing. I am not convinced that is what we saw, but the behaviors became so serious from various antibiotics that we would stop/change them. My son is tall and his safety was literally at stake. It continues to be a severe issue and we are currently home bound. Anxious to get the labs done. Thank you.

[GraceUnderPressure]

Our 21yo son has lyme and bartonella & probably other bugs too. IVIG for us happened before we started LLMD treatments. It gave us one week of noticeable improvement after the first & nothing after the second. His herxes have always been for his symptoms to get worse. Some of the antibiotics that were effective caused too much die off for his body to clear & we had to be careful not to let things go too far for fear we wouldn't be able to bring him back. The dr we are seeing now cycles his antibiotics & some of the herbs and that seems to make the herxes less severe/more tolerable.

[Nick12]

Thank you for sharing. We gave our son augmentin a year ago. Behaviors were worse than any pandas episode, but the doctor insisted bacteria die off. He has periods of doing better, but he has never been the same. Now it's October again and we are going downhill again.

We are checking his micro plasma level but there must be more going on.

[rowingmom]

Our 21yo son has lyme and bartonella & probably other bugs too. IVIG for us happened before we started LLMD treatments. It gave us one week of noticeable improvement after the first & nothing after the second. His herxes have always been for his symptoms to get worse. Some of the antibiotics that were effective caused too much die off for his body to clear & we had to be careful not to let things go too far for fear we wouldn't be able to bring him back. The dr we are seeing now cycles his antibiotics & some of the herbs and that seems to make the herxes less severe/more tolerable.

 

We had the same problem with antibiotics (we didn't do IVIG) causing large die-offs and increases in symptom levels, especially ticcing. For this reason we also ended up pulsing DD on her more involved combination abx protocols. Only with pulsing was she able to regain a good baseline.

 

Read up on MTHFR mutations and detoxing in the archives here. If these issues are not addressed with proper supplementation our kids can't get rid of toxins and recover properly.

[Nick12]

My son DOES have two mutations for MTHFR.

Our doctor started us on Mentax... Had to stop it after 1 1/2 weeks because behaviors were through the roof... Panic attacks, running, insomnia to name a few. We were giving b12 but I have even stopped that temporarily. Feeling like we are in quite a mess and can't get out.

[rowingmom]

Is your son taking supplements for the MTHFR mutations other than B12? Have you done 23andme, or just MTHFR testing? Sometimes other mutations need to be tackled before adding methylated B's. There can also be problems if supplementation dosage is too high.

 

http://www.mthfrsupport.com/other-gene-mutations-that-must-be-addressed-before-starting-an-mthfr-protocol/

 

http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/

[Nick12]

Testing showed two mutations for MTHFR. The doctor said if we notice a change with the mentax it's a good thing. It was not a good thing. I'm sure the dosage was too high.

[Nick12]

Testing showed two mutations for MTHFR. The doctor said if we notice a change with the mentax it's a good thing. It was not a good thing. I'm sure the dosage was too high.

[rowingmom]

I just googled mentax. It's an antifungal:

 

Mentax® Cream, 1%, contains the synthetic antifungal agent, butenafine hydrochloride. Butenafine is a member of the class of antifungal compounds known as benzylamines which are structurally related to the allylamines.

Butenafine HCl is designated chemically as N-4-tert-butylbenzyl-N-methyl-1-naphthalenemethylamine hydrochloride. The compound has the molecular formula C23H27N•HCl, a molecular weight of 353.93, and the following structural formula:

 

Not sure how that should be addressing MTHFR mutations, or am I not understanding you? Sorry.

[Nick12]

I apologize... This is the script our doctor tried. 1 capsule per day

 

(what is this?) (verify)

Metanx is a medical food made by Pamlab that contains L-methylfolate (vitamin B9), methylcobalamin (vitamin B12) and pyridoxal 5'-phosphate (vitamin B6). It is a vitamin B supplement.