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Many of my friends are doctors or work in the medical field. A well meaning friends whose sister is an Infectious Disease doctor asked me to talk to her, I did. This ID doctor recommended I speak to her SIL who heads an adolescent psychatric dept in a large NYC hospital. This doctor refered me to a pediatrician who has treated MANY Pandas patients. I spoke to the pediatrician and emailed all our labs, timeline & summary last night. Today she called me back.....

 

[the short version]

"What are all these antibiotics for? I don't see anything on these labs that justify these medecines. I am SPOOKED when I see so much drugs being thrown at a patient, I see this all the time with Lyme.

He HAD Coxsackie in the past, same with EBV, etc. most people will test positive for these diseases at 15. He needs a good pediatric psychiatrist, this should be treated psychiatrically in a theraputic setting. There is no test for Pandas. I've never heard of this lab in Oklahoma, but there is not PANDAS test. "

 

I thanked her for her time and being so prompt with looking over the labs and calling me back. The positive? It was free, as a favor to the other two doctors : /

 

So my question:

Are we crazy to believe this will all work?

 

At the moment, I'm waiting to get the kit for the Cunningham/Moleculera lab, and then run more blood tests (in addition to Cunnigham).

 

DS15 is still stuck on the couch, not bathing, not going out, BUT....he does eat, socializes, is nice and is talkative (we took down the Luvox which we think created the havoc over the weekend).

 

We are thinking of pursuing another IVIG and possibly PEX, this doctor made it sound as though I was blindly being led by two quaks who are not qualified to treat a headache.

 

I really hope she's wrong.

 

Here is my SPOOKY list:

Currently he is on (5/2/13):
Azithromycin - 250 mg/day
Augmentin - 2000 mg/day
Doxycycline - 200 mg /day
Valtrex - 2 GM/day
Deplin - 15 mg/day
NAC - 2400mg/day
B12 (Methylcobalamin) 1000 mcg/day
Luvox CR - 100 mg/day
Ubiquinol - 100 mg/ day
Folinic Acid - 4800 mcg/day
Advil - 800 mg/day
Diflucan - ?mg
Culturelle - 1/day
Acidophilus+Bifidus- 1/day

T.Anna - very tired

DS15

 

PS. I asked the ID doctor about the difference between WesternBlot and Igenex and she said the information regarding Igenex being better, is internet nonsense!

 

 

 

 

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OK, so that IS a spooky list. Is it more spooky than 2.5 years of daily abx, including 2 years of Augmentin 2 x D and Azithromycin 1 x D starting at age 4? Mind you, this is only the DAILY abx time period. There were many runs of the 10 dayers prior to DS having his tonsils out at age 4. NO. You are NOT crazy. I think we have to be careful of so many abx, but without them my son would have been misdiagnosed with severe Autism and living in the rocking, hardly verbal abyss into which he fell post T&A 2.5 years ago. Instead, he is thriving. He is a social magnet to other kids and highly engaged, reading at a 3rd to 4th grade level (currently in kindergarten), taking Tai Kwon Do, and living an amazing, happy life free of most PANDAS symptomology. Granted, he still has flares occasionally, but they are pretty darn mild. Our family is no longer living in crisis. We have been NORMAL for quite some time! It was bad, I mean REALLY bad for quite a while and I truly believe that without abx to clear to the infection(s), he never would have made it. We do the Diflucan and probiotics. Although it has been quite a while, we did lots of Ibuprofen. Hang in there, keep fighting the good fight and follow your gut!

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The idea of infection triggering psychiatric illness is much like religion or politics. Those who believe, totally get it and support you. Those who don't will tell you it's quackery, blasphemy or radical internet nuts leading you astray. Only you can decide where your truth lies.

 

That said, I would gather a binder of medical research - Cunningham's study, the published works of Swedo, Tanya Murphy, et al so that you have data at your fingertips. You may have raised some alarms within this network of associates. So be prepared.

 

I would also highlight your labs, are the viral antibodies IgG or IgM and are they high? Is there evidence to support the use of antibiotics for a chronic infection, even if an ID doctor disagrees with the treatment plan? Make notes for yourself so that you know why you're using each medication. It will give you peace of mind and also give you confidence should you ever need to justify your decision to work with particular doctors. Also document improvements that you saw once starting meds, so you can support a clinical picture that antibiotics have helped with certain symptoms.

 

As for the supplement side - are these based on results from genetic testing (e.g. Yasko's methylation panel or 23andMe?). If you've only tested MTHFR, then I have two reactions - first, you are giving very large doses of methylfolate/folinic acid - both the Delpin and folinic acid are doing much of the same thing and these are very, very large doses that could be contributing to mood issues.Too much can be as bad as too little and you're giving almost 20 mg of the stuff when most adults only need 800mcg, even with MTHFR mutations. I'd seriously examine why this is so high. Also, only providing 1mg of methylB12 as a cofactor for all this methylfolate has got to be creating a folate trap. If you're going to stay this high on the folate portion, you probably need to be doing much higher B12 - but again, I'd consider lowering the folate side.

 

If you're giving NAC and ubiquinol without knowing your son's CBS gene status, these could be making his mood issues worse. My DD who is CBS +/- cannot tolerate NAV - makes her flipped out nuts. My DS, who has different gene issues, needs to avoid ubiquinol, as it's a methyl donor and would make him agitated. 2400mg NAC is on the high side for most people, even if they can tolerate it. And I'm not sure I'd use it along with Luvox - they do similar things in terms of serotonin and you could be overdosing.

 

I don't agree with the doctor's conclusions but I do agree that these doses might benefit from a second opinion or some titering downward (slowly and one at a time). Unless your son is very large, some of these doses seem quite high to me, especially if you aren't sure if he can genetically handle some of them well.

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Hi Tanna-

 

That is a lot of meds. I am a fan of less is more (however my kids were on daily antibiotics for two years). I guess my only question is, with SO many meds, how do you know what is doing what? Did you add one at a time? Pandas symptoms are very changeable, I think it is really important to add meds kind of slowly, and one at a time- you do not want to leave a kid on a med he does not need- as there can be side effects or unintended consequences.

 

Are you treating lyme? or pandas? this doesn't look like pandas treatment- more like very aggressive lyme treatment (but that is not my area- my kiddos have pandas). I would just review this with your doc, maybe voice concern about whether all meds are needed.

 

Once we got our kids under control (we did pex)- we have found that less is more. But that is not always the concensus of this board.

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She is basically repeating what the IDSA is teaching - that Lyme is easily detected and treated and anyone who says different is a quack. I agree with LLM. It has become very political and it's a "belief" for these doctors, not something based on good science.

 

Have you read "Cure Unknown" by Pamela Weintraub? This book helped me understand the history and political climate, and therefore the mainstream medical attitude toward Lyme. If you read this book, you'll see how uninformed that doctor is.

 

We had my son on 3 antibiotics (rotating) and more supplements than that for 2 1/2 years. It helped him. Now off the abx for 4 months, he is backsliding.

 

Please follow your gut and don't let people like this doctor throw you off track.

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Good points above, although I am not at all versed in the genetic pieces that LLM is. I will add that I likely spoke too quickly with a knee jerk response. I have a strong belief about abx being needed for PANDAS treatment, in order to clear infection. I am not, however a fan of psychiatric meds being used liberally, although a handful of people have reported to me that SSRIs have worked - I would not put them on board with my son. I made an assumption that your PANDAS specialist is monitoring very closely. I also have pretty strong feelings about "non-believer" docs that aren't interested in discussing the illness, rather, negate without considering the validity of the illness.

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These were not my doctors, I was calling because my friend pushed me and I was curious. The ID doctor said I should stop reading online which has become a red flag for me in general.

 

I hope to consolidate some of the meds next week, since they were added one at a time and it had become rather a big mess.

 

DCmom, how/when did you decide in PEX? I feel that we have gotten to that point, as he seems to have stopped making any progress.

 

I will be seeing both Dr.T and Dr. Hollander next week and hope to get some of the meds consolidated as well as the blood tests done to see what has changed.

 

It's just so frustrating to hear peofessionals give you a run around...these are supposed to be reputable doctors! And since he doesn't leave the house, it makes it harder to run around : (

 

And yes, the meds were added 1 at a time. We started with Doxcycline, and then added azith, then Augmentin, then Valtrex, then Delpin, etc He was doing a teeny tiny bit better with each step, but it never got MUCH better. We are now in a holding pattern of sorts. His mood is generally good.

 

T.Anna

DS15

 

Ps. It seems genetic testing cannot be done in NY, so I'll have to drag him to NJ and see if that works...not bad enough to have an ill child, but then there is a bonus of government red tape!!

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Good points above, although I am not at all versed in the genetic pieces that LLM is. I will add that I likely spoke too quickly with a knee jerk response. I have a strong belief about abx being needed for PANDAS treatment, in order to clear infection. I am not, however a fan of psychiatric meds being used liberally, although a handful of people have reported to me that SSRIs have worked - I would not put them on board with my son. I made an assumption that your PANDAS specialist is monitoring very closely. I also have pretty strong feelings about "non-believer" docs that aren't interested in discussing the illness, rather, negate without considering the validity of the illness.

I agree that you really have to follow your gut...and speaking of gut, please make sure you are also supporting your gut with a really good probiotic or 2. The top specialists in the field (including Dr. C and Dr. S, have noted in their speeches that the gut is the 2nd brain. One of the things we are now trying is to modify our diet. I have already started, and boy am I feeling a lot better. Much harder for my 20 yo DS who had a meltdown earlier over it (giving up the inflammatory foods, such as sugar, gluten and dairy, and making his diet less acidic is, justifiably a SCARY thought.)

 

While it would be wonderful to not have to take that much abx, the reality is that there really is no choice. These doctors just don't get the fact that without it, our children are even scarier than all the abx they are taking.

 

BTW, heard a news story the other day about all the kids who are getting allergies (much worse than when we were kids.) They are trying to blame it on too many abx (the crazy thing is that the use of abx has DECREASED overall from when I was a kid (we used to get it at the drop of a hat, but now we have to fight to get it even when our kids test POSITIVE for infections!) Of course there's no way they're going to blame all the junk that's put into foods and the air, and of course tons more immunizations that are specifically designed to modify the way the immune system functions. Just thought I'd throw this out.

 

But, personally, I think you're doing the right thing, and I would suggest you just keep doing what you feel is necessary for your chlid. You, of all people, know your child better than any of these doctors do.

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Unfortunately, I think we have all had these experiences with Dr.s without knowledge of our children's serious health infections and issues.

I also had a Kaiser pediatric disease specialist mock our high positive Cunningham test, (which had a test explanation included)

our treating PANDAS Dr.s recommendation for IVIG along with a phone number offered for consult, and then I was told he didn't believe in PANDAS,

and started defying my carefully typed pages of symptoms -

I then abruptly took my daughter and left. It was awful. I was so angry. At least open your mind up to a sliver of possibility!

New insurance, took dd in to regular pediatrician, who was aghast when I disclosed she was then on

Cipro and Rifampin.

We ended up having a back and forth, me explaining Lyme bacteria in detail, etc.

At the end, I said: if it were your daughter, what would you do?

He was honest, at least. He said: I don't know.

Fast forward a year and a half later, and this same Dr. is readily willing to prescribe us Risperadone.

So there you have it. The great divide.

 

I do think some of your antibiotics are perhaps overlapping, and assume you are getting labs for liver checks regulary.

When I was on high dose antibiotic combinations (and dd)

we both took quality milk thistle daily- I really believe in that product for liver detox.

Our liver labs were always healthy.

And, high count, quality probiotics.

 

Hang in there-- it is hard, I know.

Edited by S & S
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  • 8 months later...

I hope all is going better for you T. Anna and that you had a good holiday. It's a good thing that you dropped that doctor. It's never a good sign when a doctor at a big teaching hospital can't even spell the word "medicine". :D If you don't find what you are looking for in Drs. Trifileti or Hollander, I would recommend Dr. Bouboulis in Darien. Unlike Dr. T, he takes insurance for office visits and treats both PANDAS and Lyme. While not ILIADS trained himself, he consults with Dr. Charles Ray Jones who is the granddaddy of pediatric Lyme Disease. We have seen both doctors with excellent results. Please feel free to message me with questions or for further information.

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What has helped me justify the abx combos for Lyme treatment is that my youngest bed bound son did have a huge improvement lasting nearly a year. I have Lyme and unknowingly gave it to both my boys in utero. I watched my oldest clear symptoms we though were from braces or sports. He was the healthiest of us three. I have had my vision improve, anxiety disappear and lupus like symptoms clear. I no longer get hives from the sun and my ANA is normal. Still feel like I need to sell our decisions to treat intensely.

I cautiously share my story now after a pharmacy refused to fill abx and I was reported by a psychiatrist who questioned POTS and Lyme.

What I'm hearing is that PANS is less understood than even Lyme. Sad! It has already been a hard battle to get well.

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