tpotter
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Posts posted by tpotter
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But, what is particularly interesting is the camkinase II link. That indicates infection.
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My FIL died from Alzheimer's and my DH's aunt also just recently died from it. Also, my dad had Parkinson's, and although I can't find any research showing a correlation between infection and Parkinson's (and I called them, too, but they didn't respond), he was EXACTLY like my DS in so many ways. Even had terrible OCD (hoarding), anxiety, and several other symtpoms. His came on suddenly in his late teensBefore he died, I told him that I suspected he had the same thing my children have. Personally, I just think that so many neurological and psychological illnesses are related.
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We spent years doing traditional tx (abx, IVIG, PEX), and they certainly made a huge difference, but never really gave long term relief. We are getting much more, now that we have gone "alternative", e.g. homeopathic, chiropractic, acupuncture, and ayurvedic (we're not all doing everything, for instance, my older son and DH are doing ayurvedic, while my younger son and I are doing homeopathic, plus we have been doing the other 2 off and on for several years.) Personally, I think they all help, but we chose what each would do based on personal preference. DS20 chose ayurvedic, because it cleans up the gut through diet, herbs, and spices, primarily (his gut has been a mess since the day he was born), DH does it, because I told him he had to...lol (and it is making a difference), and DS17 and I chose homeopathic, because it suited us better. We are now off abx, and most of our supplements. I see a HUGE difference when DS20 "forgets" to eat properly and take his herbs (he claims he doesn't feel the difference, but it is noticeable to everyone else around him, so he's sticking to it right now.)
Will it last forever? Will we be cured? I really don't know, but I do know that what we are doing now feels more like we are in control than the illness being in control.
My suggestion is to consider alternative treatment as a possibility (possibly in conjunction with allopathic, if you are hesitant,) and see where it takes you.
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I read an article recently about the fact that Alzheimer's patients had been found to have high CamKinase II protein activity in their brains. When I read this, I was intrigued, because as you all know, Dr. C's research, and recently released blood test tests for CamKinase II activity. So, I recently called the Alzheimer's Association, and asked if they knew anything about the possible correlation between Alzheimer's and infection, and they said that there is some research being funded to study that! Just thought I'd pass that information along.
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My 20 year old is doing great when modifying his diet, and working with an Ayurvedic doctor to repair his gut (70% of the immune system is in the gut.) It is very clear when he doesn't watch his diet, because he gets anxious, angry and confused. He was dx with Asperger's Syndrome when he was in the 7th grade (had symptoms before), and PANDAS at 15, and now we know it is PANS (including lyme and co-infections, + strep, etc.) IVIG helped with 2 very serious OCD issues.) But, the diet now is what is taking care of most everything else. My 17 yo is also doing great, using homeopathy. Herxing like crazy, but doing great. Got sick overnight when he was 8 years old, not diagnosed until 12 years old, and not seriously treated until 13 years old. Both my boys had 1 PEX, and about 7 IVIG treatments, plus years of abx. Yes, these treatments helped, but now, I am finding that the alternative treatments are helping. I don't know whether or not we would be getting this benefit if we had not taken the edge off things with the other treatments, but I do know that now, alternative treatments are helping way more. We are even off abx.
I don't know if this answered your question, but as KimBallot said, there's not enough research. Clearly, getting treatment early is a wonderful thing, but there's no question that older children can and do improve and are functional with treatment. BTW, my 20 year old is an engineering student at a major university. My 17 yo graduates this year, and plans to go to college. Neither was functional 4 years ago.
- rowingmom and croatianmum
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I can't remember if you ever tested for lyme/co-infections and/or saw an LLMD. All the symptoms sound like they could be a combo of lyme, bartonella and possibly babesia. My DS had very, very similar symptoms, and peanutbutter is what would calm him down in minutes.
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Hopeny...I suspect the reason you had no trouble with CHOP, was because it was your non-PANS child. I even had a neurologist from CHOP who was seeing my DS for Parkinson's-like tremors suggest PANDAS to me (when I simply described the symptoms and treatments my DS had after already received after being dx by 2 other neurologists and an immunologist...these drs. were not from CHOP.) I was thrilled when he suggested it, because that meant I might get local tx. But, a week later I was still trying to get back hold of him, and when he finally took my call, told me he was actually trying to avoid my call, because he decided it was "conversion disorder." Never went back, and never looked back! But, I'm glad you had a good experience.
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With CamK that high, I would suspect he's fighting some kind of infection. I read a report recently (can't remember where, but could probably find it by googling) that implicated CamK levels with alzheimer's. Personally, I believe that indicates that CamK is showing some kind of infection, and I know that Cunningham has mentioned that it can also possibly indicate lyme. If your doctor is not sure of the results, I would ask him to call Moleculara and get clarification. You don't want him guessing what it means.
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What is TACA, and what is their website address? Thanks.
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Sounds like uti.
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Best of luck. I'll keep you updated if I ever hear from NYU............................ But I keep thinking, there must be other doctors doing this, I'm trying to find them, coming up quite empty handed.
The auto-immune encephalitis assoc has recommendations so I've been trying to use that.
here's what their web-site says:
PediatricsAdultsSTAY AWAY FROM BOSTON CHILDREN'S HOSPITAL (they reported one family to CPS, and took custody of the child putting her on the psych ward, and filling her with psychotropic meds...check out "Free Elizabeth Wray" on Facebook.) Also, CHOP told us that "PANDAS is voodoo" (while my DS was hospitalized with scarlet fever, 104 temp, chorea, tics, and already dx), and told me that my DS had conversion disorder (he was dx by 3 neurologists already, and had already had multiple IVIG's. I also know someone who went to Duke, and I know another person who works there, and Duke, overall does not understand PANS. Hospital of U. Penn, told me that PANS doesn't exist (when I took my older son there.)
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mdmom, you mention CVID and primary immune deficiency together. Is CVID considered a primary immune deficiency? Just curious.
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PMing you
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I don't think anyone is offended, in fact, this has been one of the lesser "negative" postings over the years (lol). In fact, it didn't even result in being shut down...that's pretty good, if you know what I mean!
But, although I realized that I had to let others know some of my experiences, because they were so bad, I think that if we all decide to PM 1 or 2 people who post about questions about docs, then parents and patients will get the message, and we won't have to do it publicly.
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Ooops...it posted twice.
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I have held off making comments on this thread, but feel I need to. I personally do not have a problem with a doctor charging for a phone consult, especially when in private practice. Dr. Lechtman works at a research facility and, I believe in charge of the IVIG study, so I can understand how he was able to offer free consult services. I don't think anyone here would question any of us wanting to be paid for any type of work we provide.
But, I also think this is getting off topic.
I have been hesitant to get involved in this conversation, because I truly believe that we are all going to have different experiences with different doctors, and that we need to be careful about what we say about any of them, because for the most part they have stuck their necks out for us.
But, that being said, when there is a common problem, such as not returning phone calls, I do believe it is important for people to be aware.
Yes, I have had this problem with several doctors, and wasted way too much crucial time and money and only increasing my own stress by waiting for responses that were never going to come. And, that was when there were no other PANDAS docs. There really is no excuse for that.
But, what I found several years ago, when I had this problem, was that when a question was posed, I would PM whoever asked the question, and let him/her know that I had some personal information to share. I would then note on the thread, that "I PM'd you." to let that person know to watch for it.
I agree with Ophelia22 that people need to, and deserve to know, and that none of us can afford to spend the time or money chasing drs. who may be a problem. But, I also think that there are ways that we can provide that information privately.
- MomWithOCDSon and nicklemama
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We've been using the Jarrow brand (get it from the Vitamin Shoppe) for years now. Very affordable, and it works!
Ditto. And, it doesn't have lactose like Florastor does.
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What is BIE?
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Yes, MMC...$70 is low. I pay $90 per week, but given how much it helped, I feel it has definitely been worth it for me. Both my boys tried it, too, because of my success. DS20 couldn't handle the needles (he has sensory integrative disorder, and I also find that when something specifically hurts me, the corresponding area where the needle is placed, definitely hurts sometimes, and my other DS said that it didn't help him.) But, it very definitely helped me. We are also doing homeopathic, and it is very much helping DS17 and me (well, we're herxing like crazy, so it must be doing something...and neither of us really believed it would do anything...lol)
Isn't it great to find a doctor right down the street (my acupuncturist is only about 7 minutes from me, and our homeopath is on Skype!)
I can't wait to see if the acupuncture works for you.
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Yes...got me to 100% after years of having mycoP (then got exposed to severe mold, and I'm back to chiro, plus also doing homeopathy.) Agreed with JoyBop, that the person doing acupuncture needs to be experienced, and know what s/he is doing. I picked a Chinese dr. out of the yellow pages (near my home), and got very lucky...he's been doing it 30 years, and is only 38 years old.
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Is she still on abx? Also, if it doesn't go away, I would suggest looking for other infections, too, such as lyme, bartonella, other co-infections, viruses, etc.
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I see that she has tested positive for bartonella and lyme. Are you treating for both...both cystic and regular forms?
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Fever, though, means that he's fighting the infection, which isn't bad. When my DS got a low grade fever recently, I celebrated. That being said, I would keep an eye on his behavior, and if it gets really bad, I would dose him with ibuprofin, but my opinion, is to let the fever do it's job as long as possible of killing whatever he's got.
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DS13 dx PANDAS has been IgG positive for mycoplasma and band 41 for about a year now. Just wondering what others have used to successfully eradicate it. Antibiotics, supplements, etc?? We have tried augmentin, biaxin and doxycycline. Thank you!
After 6 years, I'm STILL trying to eradicate it (mine is IgM and IgG). Both my kids have high IgG, but my younger son's IgG elevates when my IgM elevates. Last we checked my DS, same was for him. Very, very difficult to eliminate.
Doctors treating PANDAS
in PANS / PANDAS (Lyme included)
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Seriously...his name is Dr. Doctor?