Another IVIG and lyme question

[momofadult]

My son with complicated PANS is scheduled for 5 days of HD IVIG next week through his local neurologist. His out-of-state PANS consultant has recently found 4 postive IgG lyme bands on the Western blot. He was tested 2 years ago and only had one band. (No co-infections, fortunately.) Consultant suggests we continue with the plans for IVIG and give augmentin before and a couple of weeks after IVIG. Has this plan worked for others in a similar situation? I find it interesting that so many of our kids have lyme with their PANS although I realize our forum has a selection bias. Is there research data that shows a higher incidence of lyme in PANS? Link available? Thank you in advance for considering these questions.

[LNN]

Are there any positive IgM bands? Obviously your son has been fighting lyme at some point to create 4 bands and if he hasn't been treated for it, then chances are high it's still there. If that's the case, a few weeks of augmentin won't do the trick.

 

Not to scare you, but my son had undiagnosed lyme when he had his one and only IVIG. It was a bad experience for us. There were many things we could have/should have done post-IVIG to support him had we known about the lyme. So if he does struggle post-IVIG, look through the archives to look into controlling inflammation, helping the body detox, and treating lyme on an on-going basis.

 

As for any research - none that I know of. They can't even get research for "classic" pandas or lyme, let alone some combo. But the anecdotal stories were common enough for Swedo to propose the name change to PANS. So it may be a bias but I think it's now recognized among the specialists that if strep alone doesn't seem to be the culprit, mycoplasma, viruses and lyme are the next things to investigate.

[philamom]

My son with complicated PANS is scheduled for 5 days of HD IVIG next week through his local neurologist. His out-of-state PANS consultant has recently found 4 postive IgG lyme bands on the Western blot. He was tested 2 years ago and only had one band. (No co-infections, fortunately.) Consultant suggests we continue with the plans for IVIG and give augmentin before and a couple of weeks after IVIG. Has this plan worked for others in a similar situation? I find it interesting that so many of our kids have lyme with their PANS although I realize our forum has a selection bias. Is there research data that shows a higher incidence of lyme in PANS? Link available? Thank you in advance for considering these questions.

Unfortunately, like lyme, a negative tick-borne co infection test doesn't necessarily rule it out. Bartonella is very elusive and very difficult to obtain a positive.

We originally did the Igenex co-panel which came back normal. Our LLMD then ran bartonella through Specialty Lab (sub-division of quest), which was positive.

[momofadult]

Thank you LLM. No IgM bands. Not sure how DS tested with only one band on the Western blot almost 2 years ago and then four bands recently without any known exposure unless the first Western Blot missed them. From your experience, it sounds as though we should get the lyme well under control before we move on to the IVIG. Doesn't the treatment for lyme take an extended period of time? How long did it take to get your child's lyme under control? Hmmmm, now I am wondering if lyme infection is the reason months of PEX failed to help him. I guess I am going to have to get up to speed on lyme now. Researching the latest on Pandas/PANS, autoimmune encephalopathy, mitochondrial disorders, cerebral folate deficiency, autism, methylation problems just wasn't enough. Sounds like I need to find a good lyme doctor to work with. It appears that an interdisciplinary team of specialists ought to evaluate and treat our PANS kids. Their illness is complex and spans many disciplines.

Thank you philamom. You make a good point about the negative co-infections results.

[rowingmom]

These infections can sequester in joint and cartilage tissue, in organs and in bone marrow. PEX will exchange plasma, but the reservoirs will still be capable of releasing viable bacteria.

 

DD has never had any reactive IgM bands.

 

As we treat lyme/bartonella her bartonella titers decrease, while her number of lyme-specific bands on the WB increase.

 

The idea on that being, lyme and bartonella suppress the immune system to such an extent that it is unable to react properly. As the infection load decreases the immune system becomes more reactive and capable of producing proper antibodies.

Edited October 17, 2013 by rowingmom

[momofadult]

Rowing Mom, that is the first explanation that I have received as to why he did not improve with PEX. Thank you! The collective wisdom of these boards is invaluable. Now I must search for a LLMD in northern California and get up to speed on lyme.

[sf_mom]

If you are in Northern CA there are some great LLMDs in the Bay Area. Please feel free to PM for prespective on names treatment styles. Most of them are versed in treating PANS no matter the infectious trigger.

[rowingmom]

Rowing Mom, that is the first explanation that I have received as to why he did not improve with PEX. Thank you! The collective wisdom of these boards is invaluable. Now I must search for a LLMD in northern California and get up to speed on lyme.

 

Collective wisdom is a wonderful thing. I truely belive that DD would not be where she is now without this forum, our LLMD and Stephen Buhner's newer books.

 

Please make sure the LLMD you find is ILADS recommended and trained. SFMom will head you in the right direction.

 

There are other doctors out there that purport to be lyme literate but follow IDSA guidelines (short term abx and cured) and not the ILADS ones. The LLMD will test for lyme and other coinfections, but also provide you with a clinical diagnosis and long-term treatment if needed.

 

If you find yourself on the lyme/coinfections path please do purchase Stepehen Buhner's book on healing the lyme coinfections of bartonella and mycoplasma. Buhner is a master herbalist who has throughly versed himself in the nature of these bacteria. All of his information is supported by journal references and contains a lot of medical explanations on the specific cytokine pathways and inflammation induced by each bacterial infection.

 

http://buhnerhealinglyme.com/bookstore/

 

I would also suggest getting up to speed on MTHFR mutations by reading LLM's archives. Many of our children are effected by these deletions and need proper supplementation.

[momofadult]

Thank you SF Mom. I sent you a PM.

 

Rowing Mom, I will look at Stephen's book as I delve into the world of Lyme. Thank you. The lyme issue is just one more complication in his illness that has to be figured out and isn't straightforward. Phew!

 

From the posts, I am wondering if we may bring any sequestered lyme out of hiding and obscure the evaluation of the effectiveness of the IVIG if we give antibiotics around the time of the IVIG? So much is unknown.

 

You make a good point about methylation research. I have been studying my son's 23&me results and taking notes from LLM's excellent posts. No MTHFR mutation but homozygous for CBS, MTR, MAO and a few others. Much to stay on top of!!!