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My PANDAS Story


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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.

 

 

Thank you for coming on here to share your story.

 

Do you mind explaining what pulse steroids are? I have been considering steroids for my dd 8 but there are such a mix of responses reported, I'm trying to figure out if there is a "best" way to administer them. Thanks

 

oh, and did you have the plas. after the steroids and did that continue the healing, or were the steroids the last thing that really spurred the healing?

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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.

 

Thank you SO much for reposting. We really do appreciate your experience. It is clear that you are certainly not new to PANDAS and you have much to share.

 

I am curious about the IVIG as I am leaning that way now with my son. I am wondering if your infections were cleared before IVIG (I edited this as I now re-read and see you were tested for immune deficiencies and did not have any). Also, was IVIG difficult for you in the short term, or was it difficult for a very long time.

Edited by kimballot
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I was on steroids a total of 3 days- ICU because the dosage was so incredibly high. Pulse steroids are high doses of steroids which suppress the immune system. Steroids were the last treatment that I had.

 

 

Changed from Amox to Zithro because Zithro was more potent against strep.

 

In college I was on Zithro but had a lot of break through sinus infections- although I'll admit I wasn't really good about taking it so that could have been why but anyways, that's why I'm on Augmentin now.

Edited by fr88
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Thank you for posting! I find it interesting that Vitamin D and NAC worsened your symptoms.

 

In regards to mycoplasma, that is also a trigger for some PANDAS too or as the original trigger for a PITAND.Don't know if you've ever tried this, but many find Ibuprofen also helps whne symptoms surface.

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"IVIG caused A LOT of serious problems."

 

THIS IS SCARY TO READ, AS I FINALLY MANAGED TO GET TREATMENT WITH IVIG FOR MY SON AFTER MORE THAN SIX YEARS!!!

 

I guess I am not going to ask you to elaborate on that part.

 

Anyway, thanks for sharing. Glad you were helped, even if present challenges. Sounds like you are the stronger for it. I hope that you feel supported here!

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Sorry for even more questions, but it also sounds like your IVIG was not successful? YOu mentioned that you had major problems from it.....can you elaborate? Sorry again to press, but this is my fear for my 7 year old---is it worth pressing the IVIG? Thanks so much for your openness with your personal information.

 

Also, I just want to add, that sometimes many of us might react/respond in a way..or even present things in a way...that comes off more intense, defensive, accusative, etc. than intended. We are all a bunch of "mamma bears" here, (and a few pappa) who are desperate for the health and well-being of our children. Thanks for coming back--I think we have only gain from having a seasoned Pandas-survivor here.

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IVIG just overall made things much worse for a very long time before making them better- and it didn't get me completely well. I was very oppositional defiant, suffered from SEVERE OCD and very bad tics.

 

 

 

 

Sorry for even more questions, but it also sounds like your IVIG was not successful? YOu mentioned that you had major problems from it.....can you elaborate? Sorry again to press, but this is my fear for my 7 year old---is it worth pressing the IVIG? Thanks so much for your openness with your personal information.

 

Also, I just want to add, that sometimes many of us might react/respond in a way..or even present things in a way...that comes off more intense, defensive, accusative, etc. than intended. We are all a bunch of "mamma bears" here, (and a few pappa) who are desperate for the health and well-being of our children. Thanks for coming back--I think we have only gain from having a seasoned Pandas-survivor here.

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fr88---that is my biggest fear---making things worse. I too am surprised to see that Vit. D and NAC made things worse. I give dd Vit. d daily, and was thinking about trying NAC. How did you figure out those things specifically? Also, were you IgE allergic, or did you have IgG/IgA sensitivities? Foods?

 

VERY interesting about the Th 17---check out the post I made earlier with a link--I think it was the one where they were speaking of this exact thing! On second thought, that might not have been the link I posted??? but I just read this today and made a note to check into this Th17.

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I wanted to try vitamin D and NAC because of their ability to "modulate glutamate" or so I read. I felt very very antsy and anxious on them about an hour and a half after taking them. I thought maybe it was just a bad day or I was exposed to something but had the same reaction several times after. A high IgE does not necessarily mean that you are CONSTANTLY allergic to something- it means that you have a high tendency to react. I learned this not that long ago. For example, you can have two people with a severe ragweed allergy 1 with an IgE double that of normal and another with and IgE that is normal- but they will react the same. All the IgE antibody shows is that you have a higher CHANCE of reacting to something- not that you are allergic. That's why people with high IgE's often have more allergies. Only a skin test or blood test will show allergies.

 

 

I was allergic according to a skin test & blood test so IgE

 

fr88---that is my biggest fear---making things worse. I too am surprised to see that Vit. D and NAC made things worse. I give dd Vit. d daily, and was thinking about trying NAC. How did you figure out those things specifically? Also, were you IgE allergic, or did you have IgG/IgA sensitivities? Foods?

 

VERY interesting about the Th 17---check out the post I made earlier with a link--I think it was the one where they were speaking of this exact thing! On second thought, that might not have been the link I posted??? but I just read this today and made a note to check into this Th17.

Edited by fr88
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FR88,

 

Glad you are back on! I just wanted to mention that there are several strains of mycoplasma. Not all are carried by ticks. The one we refer to here (and the one you most likely had) is Mycoplasma pneumonia...(walking pneumonia). I am not sure if this strain is carried by ticks, but, even if it is, your chances of getting it from human contact is MUCH more likely than getting via a tick. M. pneumonia is commonly spread human to human. Don't get worried about Lyme based just on the fact you had Mycoplasma. And, you are very wise to be asking questions and being skeptical of the Lyme testing.

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fr88, thanks for posting all of this most valuable info...

of course i have a question...and probably more later...

do you feel that you are better than when you were younger..

did it only come back..lets say 15%...

can i ask what are your current symptoms??

do you think others pick up on it, or is it something you can mask??

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No one has any idea that I have PANDAS from looking at me. Right now like I mentioned, my antibodies are up so I have some OCD, Tics and anxiety but it is manageable until I can get another round of steroids or plasmapheresis.

 

 

fr88, thanks for posting all of this most valuable info...

of course i have a question...and probably more later...

do you feel that you are better than when you were younger..

did it only come back..lets say 15%...

can i ask what are your current symptoms??

do you think others pick up on it, or is it something you can mask??

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I hope you don't mind but could you share what tics you had or may still be dealing with. This is what my son is left with. Thank you, Kathy.

 

 

 

My entire body shakes- my head my arms, my legs. Usually I can hide it or hold it in until my lunch break. After, I'm fine.

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fr88- Thank you so much for sharing, I am so interested in all of your information as you are one of the people that has helped us to get to where we are today AND you are an intelligent, functioning young adult - which is where I am hoping my son will be in 9 years!

 

I am wondering about your IVIG. Clearly, it was a very bad experience for you. I am wondering when you had it (what year), as so much has changed in the way IVIG is delivered - even in the past year.

 

 

Also, regarding the Cunningham blood tests - I don't think that is really a "heated" topic (though we do have heated topics on here!). I think it is more a confusing topic. In the 2003 study they specifically measured 3 antibodies and 24.3.1 was the one that elevated CamKinase the most. However, in the subsequent 2006 paper they just say "antibodies", but they don't say 24.3.1. I think your answer from Cunningham may have depended on which study you were discussing.

 

I don't know if you saw my questions about this to Buster yesterday on another thread. Personally, I am just trying to sort this out since my son did not have any clear signs of strep at the time of his blood draw for the Cunningham study but he did have elevated Cam Kinase and severe sinusitis.... so I am left to wonder if he really DID have a strep infection but did not have an elevated ASO, or if he had some other pathogen in his sinuses that caused an elevation in Cam Kinase. I don't know if it really matters because antibodies were raising the Cam Kinase either way and there must have been a breach in the blood brain barrier given his neurological symptoms and the fact that prednisone calmed it... I think it is just my own quest to understand all that has happened the last 13 years.

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