Moving from treating lyme to PANDAS

[momcap]

After 14 months of treating lyme with high dose combo abx and supportive supplements we are being forced to stop. Our family doc will no longer do any bloodwork or prescriptions for us if they relate to lyme disease, and has advised us in very strong terms to stop this treatment. He even went so far as to tell me he thinks DS's symptoms are "attention seeking", and that too much screen time is likely a contributing factor (DS was playing games on our ipad while waiting for the dr). He gave us a referral to a pediatrician who he believes can help us pursue PANDAS, although given his previous comments I don't think he supports this either, and he was not even interested in looking at DS's cunningham results.

 

DS was on 3 high dose abx and made AMAZING progress, although in recent months he had plateaued and was stuck with mood lability issues. So a few weeks ago when our family doc pulled the plug we weaned down 1 antibiotic and symptoms immediately began to return. We started weaning down the 2nd, and DS is now berserk. And by berserk I mean he is aggressive, agitated, OCD is once again debilitating, sensory issues are on overdrive, manic-type behaviours, got suspended from school for attacking a student and knocking down a teacher, yelling, throwing chairs, rage fits, elbow pain, stomach pain, wearing feminine hygeine pads because pee is dribbling and won't stop, trouble sleeping, separation anxiety, vision disturbances - bright lights & floaters, episodes of vision going black and feeling like he will pass out, binge eating, med refusals, and short term memory lapses (i.e. "What did we just do 5 mins ago? ... Oh ya, I forgot." And losing thoughts/words mid sentence.) In short - HELP!!!

 

Does anyone have any advice, suggestions, or even just moral support? We are considering treating lyme with naturals, focusing on mold remediation, really pursuing alternatives like MTHFR and pyroluria, and/or focusing on PANDAS. I'm not sure what other options we might have at this point, but I am eager to hear anyone's advice as we don't have the resources to do all of this, and we need to narrow down our options to the most likely to help.

[SSS]

Oh, I am so sorry! I tell you, this stuff is rough.

 

I have dd7 on the Cowden 6 month condensed protocol.

I am not endorsing it, too soon to tell, we are only on day 42,

and the problem we still have is

a cold type virus comes through here,

and all he!! breaks loose.

We had gotten to full dose (for her weight)

of the Samento and Banderol, which are used for the first 3 months before switching,

we were 'okay',

then she got a cold (and yes I had her and sister's throat checked for strep.)

 

I don't have the very clear picture like you do: Antibiotic combination, totally fine, off antibiotic combo, 180 turn around.

That is pretty significant.

There was a poster here who was starting Zhang's herbal protocol, wondering how that is going?

Sorry I can't be more help- you do have my moral support.

[LNN]

Lots of moral support here too. But that hardly works as well as antibiotics.

 

My Ds had been on combo abx for 20 months for lyme (single abx for a yr prior based on Pandas). We had finally gotten him symptom-free and 100%. So we taper off abx. Like you, symptoms started to return, tho not nearly as dramatic as you describe. We re-started abx and have regained lost ground. In a few weeks, we'll do some cyst busting with tindamax and then biofilms. Dreading it but know it has to be done. The stuff is not gone, just in hiding.

 

I wish I knew what to tell you. I suppose your options depend on your ability to travel to the US or not. From the sounds of it, you're not likely to find a supportive doctor locally. If you do need to manage on your own and use naturals, Stephen Buhner has written extensively about his protocol using only herbals http://www.gaianstudies.org/Lyme.html and http://buhnerhealinglyme.com/ On the first link, he also lists two doctors in VT who might be able to help. One is in Brattleboro, just south of the border.

 

My bias is that using only herbs will take longer but I know Ann Corson, a widely respected LLMD pediatrician, does not use abx in her practice. So it can obviously be done.

 

As for lyme vs. Pandas treatments - despite the 2 yrs battling lyme and treating for pyroluria (which was amazing for son but did little for daughter) and treating methylation (not an issue for son but amazing for daughter), my son still flares from bacterial infections and we need to add amox or augmentin to get the horse back in the barn. (these are not part of his daily regimen. zith is but for him, it doesn't get the job done for Pandas). The Pandas beast is far easier to tame now (flares far milder) but if you think you can get a Pandas friendly doc on board to give you some abx for strep issues, then maybe that would be a good parallel plan in addition to pursuing an herbal lyme protocol.

 

I'm sorry you're in this quagmire where politics and bias supersede patient health. Maybe take an old sock and make a voodoo doll of your doctor. Buy yourself some nice hat pins. Won't score you abx but might make you feel a little better...

[Suzan]

OMG, I am so sorry! This is just awful.

 

Treating KPU helped us a lot. Also, Deseret Biological Series therapies are very helpful for us too. Still abx help my dd the most and we can't get any right now either!

 

LLM, I didn't realize Ann Corson does not use abx! I'll read up on her protocol again.

 

HUGS!

 

Susan

[LNN]

I came across this site today - haven't done a ton of browsing, but pass it along as a resource in case you want to explore something and need a place to search for research

 

BMC Complementary and Alternative Medicine is an open access, peer-reviewed journal that considers articles on interventions and resources that complement or replace conventional therapies, with a specific emphasis on research that explores the biological mechanisms of action, as well as their efficacy, safety, costs, patterns of use and/or implementation.

 

It is journal policy to publish work deemed by peer reviewers to be a coherent and sound addition to scientific knowledge and to put less emphasis on interest levels, provided that the research constitutes a useful contribution to the field.

 

http://www.biomedcentral.com/bmccomplementalternmed/

[MichaelTampa]

So sorry about the mess.

 

Dr. Klinghardt of the Seattle Washington area has a lot of excellent non-abx treatment ideas, as well. They have some practitioners trained on his approach in various parts of the country/world. I don't know about Canada, but it is a possibility you could look into. There are other practitioners in his office that go by a similar approach, and I know that at least one does some appointments via Skype, so there is possibility to get a lot of help in this regard. If you're a do-it-yourselfer, there is a lot you can read that Dr. K. has written. But if you want you, you could get it there, or even locally via phone/computer.

[JuliaFaith]

Have you done any parasite/worm protocols? These helped with my son's mood liability tons when he was first starting treatment. Did see them come back with a new PANS flair but slowly they are decreasing as he gets farther away from the flair.

 

Son was also testing for KPU at the beginning of treatment so it seems like it would be important to look at this if you have not already.

 

There are some great ideas on this thread. Hope you find a doctor that is more supportive and knowledgable.

[ShaesMom]

I'm so sorry you are going through this. I must be incredibly tough to feel like no one is helping you. You never know - it may turn out to be a blessing in disguise.

 

I'm thinking GF\CF diet and digestive enzymes may be helpful. What about the supplement MSM? SFMom has had good luck with it. Treating parasites would also be doable.

[rowingmom]

I am so sorry this has happened to your poor dear son... You were so resourceful to find a doctor in Ontario that helped you for as long as he did, but that's not of much help now. I would second the stuffed sock/hat pin idea.

 

Our family doctor just poo-pooed the very idea of lyme and stated that DD11's Igenex results were bogus - I did not waste my time trying to educate him.

 

Our ped psychologist was the one that suggested PANDAS may be our problem (first time I had heard of PANDAS) but said that DD11 would not qualify for IVIG because she had to be quite incapacitated. It sounds as if your son may qualify if you can find a psych/ped that agrees with the PANDAS Dx and can Rx IVIG. The trouble is, even if you do find a ped that agrees with the previous Dxs, they will still be constrained to short term abx treatment.

 

There is an alternative practitioner in Niagara Falls who studied ART under Klinghardt. He claims to treat lyme with positive results, although I haven't contacted him yet - I want to see what our LLMD can do for us in the upcoming year. Perhaps he might know of someone in your area that could help. I have seen no mention on his website of PANS.

[MichaelTampa]

I am so sorry this has happened to your poor dear son... You were so resourceful to find a doctor in Ontario that helped you for as long as he did, but that's not of much help now. I would second the stuffed sock/hat pin idea.

 

Our family doctor just poo-pooed the very idea of lyme and stated that DD11's Igenex results were bogus - I did not waste my time trying to educate him.

 

Our ped psychologist was the one that suggested PANDAS may be our problem (first time I had heard of PANDAS) but said that DD11 would not qualify for IVIG because she had to be quite incapacitated. It sounds as if your son may qualify if you can find a psych/ped that agrees with the PANDAS Dx and can Rx IVIG. The trouble is, even if you do find a ped that agrees with the previous Dxs, they will still be constrained to short term abx treatment.

 

There is an alternative practitioner in Niagara Falls who studied ART under Klinghardt. He claims to treat lyme with positive results, although I haven't contacted him yet - I want to see what our LLMD can do for us in the upcoming year. Perhaps he might know of someone in your area that could help. I have seen no mention on his website of PANS.

 

 

Could you send me the name of that N.Falls practitioner you are mentioning? I visit that area occasionally and he could be a good resource.

Edited October 20, 2012 by MichaelTampa

[momcap]

Thanks everyone! I appreciate the support and good suggestions. DS has been hypomanic since I posted this, which can be overwhelming, but it is also a breather, cause he's so happy and cheerful. Unfortunately it's an edgy, uneasy happiness, with lots of outbursts mixed in. But hey, we'll take it! Still mulling over which direction to take. Thank you for your feedback!

Edited October 20, 2012 by momcap

[rowingmom]

Buhner has a new book out - Herbal antibiotics: natural alternatives for treating dug-resistant bacteria. Lots of info on treating bacteria other than lyme/co. Interesting because we really don't know what else we are up against. Last night I found:

 

"Most plants contain both antibiotic substances and a potent synergist, quite often one or more efflux inhibbitors. Goldenseal, which contains berberine, is an example. Berberine, a strong antibacterial, is very active against a number of resistant organisms. It is considerably more active, however, in the presence of another constituent in goldenseal, ....5-MHC, which is a multidrug efflux pump inhibitor. It reduces or eliminates MRSA's ability to eject antibiotic substances that might harm it from inside its cellular membrane. 5-MHC has no known function other than to do exactly this, and it is one of the reasons goldenseal is so effective in the treatment of resistant infections..."

 

I came across a blog the other day linked to one of the BCH facebook PANDAS respondants. This mother has a child with autism who has recently found out from Dr T that they are dealing with PANDAS as well. After several months of Abx, their doctor decided that they needed to go the herbal route (I think they tried homeopathy as well) and she has been treating with goldenseal, OoO, alimax, neem and a couple of other things. I'm not sure who their doctor is, but the mother gives the dosages and finds herself shifting back and forth from treating bacterial infections and yeast problems. Apparently they are having some luck resolving ticcing issues.

 

http://www.regardingcaroline.com/tightrope.html

 

 

 

I know I will eventually have to head down this path (treatment other than Abx) myself because we are using pretty much every last cent treating DD11 in the US. We can not keep this up for much longer - we are dipping into retirement funds, but I am lothe to quit Abx as she does so well on them.

 

This s**t I would wish on no one, not even my sister who tells me to "take her off Abx, give her all the gluten and casein she wants and just let her be a kid". She has no children.

[philamom]

Connie Strasheim has just published a new book "Beyond Lyme Disease" written for people who tried everything but are still sick.

[SSS]

I wanted to add something about Lyme/PANS-

 

My dd7 has been off antibiotics, treating Lyme and co. w/ herbs, Cowden protocol.

Doing 'okay' until an illness from school came into the house-

OCD started coming back around clothing, aggressiveness, etc.

Tried to manage w/ ibuprofen, keeping herbs going-

the PANS flare continued- getting worse.

I broke out the Azithromycin-

not kidding, 1st dose quelled it. Azithromycin hasn't been magic like this for us in a long time- maybe it is now because she's been off it for a long while.

(by the way, she doesn't have strep, had it checked)

I plan (ha ha) to just do a 7 day stint of the Azith., then go off- still doing herbs/Cowden throughout-

 

I guess my point:

If you go to treating the infections with herbs, maybe keep a little stockpile/ stash antibiotic in case of emergency.

[SSS]

Sorry, in thinking more, I realize you are in a state of emergency right now.

 

Since they are cutting you off, and you've had this severe relapse as a result, maybe an IVIG? I think you've not had it before for this child.

Have you taken him back and told them about the huge relapse?

Wish you better days-