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My PANDAS Story


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Pro-Active Things I've Done:

Allergy Testing------------------------Severe Allergies

Immunodeficiency Testing----------------No Immuno-Deficiencies.

Echo Car-diagram every year

*still debating on IgeneX*-

 

 

Surgeries & Procedures that I've had

Adenoidectemy (sp)

Tonsilectemy (sp)

Endo-scopic sinus surgery

Ear Tubes 4 years in a row. - No longer needed as an adult

 

 

Things which made PANDAS worse for me:

Hormonal Birth Control

Decongestants with pseudopedrine (sp)

Vitamin D

NAC

Stress

Allergies

Illness of any sort

TB Test/Vaccines

 

The only time I ever needed immuno-suppressive therapy was in response to strep. (Steroids, IVIG, Plasmapheresis) The rest usually went away on its own or with abx. This is the explanation as to why that was given to me by several PANDAS doctors:

 

When you get sick your body produces pro-inflamatory cytokines which weaken the blood brain barrier. I was told that children with PANDAS have consistent colonization of strep A and therefore always produce the antibodies that Cunningham measures at a low level. When the blood brain barrier is weakened, neurological symptoms occur.

Although this is unproven- I have lived with the disease and it does make sense. (at least to me) Because I don't need immuno-suppressive therapy after I get sick or when I have allergies.

 

I was told by Cunningham that the antibodies she measures are in response to GABHS and GABHS only. This is also on the PANDAS RESOURCE NETWORK website. This is what I believe but it is obviously a very heated subject.

 

 

Things which help my PANDAS symptoms & Why I take them.

 

Natural Progesterone- Prometruim - Perscribing Doctor- Alan Jacobs.

Why- I correlated my tics and OCD worsening during the points in my menstrual cycle when estrogen was the highest. Plus natural progesterone is an anti-inflammatory.

 

CoQ10 & Fish Oil

Why: Good Antioxidants- help with free radicals ect.

 

Proph Augmentin & Probiotic Perscribing Doctor- Larry Cohen- Cardiologist

Proph Augmentin because I had rheumatic fever after being diagnosed with PANDAS

Probiotic w/o strep thermopholis due to the daily antibiotics.

 

Zytec/Nasonex

Why: Helps control allergy symptoms and prevents sinus infections due to congestion.

 

 

I'm currently researching a product called Chang Shan- (Haven't tried it yet) It's a Chinesse herb which blocks a pro-inflammatory cytokine Th17 and has recently been implicated in a variety of auto-immune disorders. There is a drug which recently passed in phase III clinical trials by the FDA called Laquimod. It's a drug for MS- a neuro-immune disorder, but it's the first auto-immune drug on the market which does not suppress the whole immune system- It blocks th17. I hope to perhaps try this when it's on the market.

 

 

I'm curious about IgeneX I must admit despite my skepticism. Throughout high school and college I was on Doryx in addition to Zythromax for acne. *symptom free* Now I see that its a treatment for Lyme. Junior year of college my acne cleared up- I got off of it and had a Mycoplasma infection. My symptoms crept back a little. I now see Mycoplasma is related to Lyme. I wonder if the Doryx was simply keeping things at bay.

 

 

I would never do IVIG again EVER. If I got strep I would do plasmapheresis or pulse steroids. IVIG made things very difficult for both me and my family. I am extremely against it from personal experience. This was not the treatment that got me well. I also don't like the idea of other peoples antibodies in me. Steroids and plasmapheresis are more clean- although they pose their risks as well.

 

 

At the moment I'm not symptom free- my antibodies crept up according to Cunningham but I am living just fine. I probably had exposure to strep in college w/o titers rising. I had ALOT of sinus infections.

 

 

Next Step: Either rule out lyme or treat it and then have pulse steroids this summer.

Edited by fr88
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FR88!!!

 

Please don't let yourself be pushed off the forum! YOU were not being at all disresepctful. Disrespect is when others can't take or accept other people's views or opinions. I know...I have experienced it first hand. If you disagree or question anything Lyme...you are marked and you better watch out! We have lost so many great PANDAS posters because of this. It is really tragic. I almost left, too. But, I will keep fighting for PANDAS and sharing my opinions and points of view....regardless of who likes it or not. We can't let it become one-sided,SPEAK UP.....please keep sharing your experiences. We all need insight from someone who has been there!

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Pulse Steroids got me well- 30g/kg

IVIG caused A LOT of serious problems.

I began getting well about 1 week after the steroids- stayed well for a good ten years with proph abx.

Edited by fr88
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Pulse Steroids got me well- 30g/kg

IVIG caused A LOT of serious problems.

Are you symptom free today? Can you share more of your story?

 

I had a very had time dealing with PANDAS in college and made a lot of mistakes which impacted my health. I was symptom free for about ten years. Currently I am not symptom free due to my carelessness and inability to accept the disease in college. I am however, still living just fine. I graduated college with honors, have friends and have a full time job. PANDAS is a very difficult disease to accept from the childs perspective. I went through a lot. I was diagnosed in 1998 so I went through all adolescence wondering if I had permanent brain damage. - Now it's known the antibodies only interfere with neuronal signaling. Things were simply difficult because there was a lot less known than now.

Edited by fr88
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Pulse Steroids got me well- 30g/kg

IVIG caused A LOT of serious problems.

Are you symptom free today? Can you share more of your story?

 

I had a very had time dealing with PANDAS in college and made a lot of mistakes which impacted my health. I was symptom free for about ten years. Currently I am not symptom free due to my carelessness and inability to accept the disease in college. I am however, still living just fine. I graduated college with honors, have friends and have a full time job. PANDAS is a very difficult disease to accept from the childs perspective. I went through a lot. I was diagnosed in 1998 so I went through all adolescence wondering if I had permanent brain damage. - Now it's known the antibodies only interfere with neuronal signaling. Things were simply difficult because there was a lot less known than now.

Are you currently taking any medications for treatment? Forgive me...if too personal!

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I currently take Augmentin proph- I plan on staying on antibiotics indefinitely. I can get a prescription for them due to the rheumatic fever. I have mitral valve prolapse.

 

 

 

1998-2004- Amoxicilian

2004-2010- Zithromax

Now- Indefinate- Augmentin

 

When I get sick- I use ceftin or levaquin

Edited by fr88
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I currently take Augmentin proph- I plan on staying on antibiotics indefinitely. I can get a prescription for them due to the rheumatic fever. I have mitral valve prolapse.

 

 

 

1998-2004- Amoxicilian

2004-2010- Zithromax

Now- Indefinate- Augmentin

 

When I get sick- I use ceftin or levaquin

 

Hi fr88,

 

How valuable to hear things from your perspective !

 

I am wondering : Why did you change from Amoxicilian to Zithromax, and from Zithromax to Augmentin ? And did/do you notice any difference ? And what dosage ?

 

Best wishes to you !

A PANDASmom from Denmark

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