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browneyesmom

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Posts posted by browneyesmom

  5. Help! Strep with Lyme

    in PANS / PANDAS (Lyme included)

    Posted

    Thx... Cliinda & Rifampin had been our 'go to' protocol before Lyme hit the scene... didn't work during the fall. I'll discuss trying that again with Ped today, now that we know about Lyme & it's being treated.

     

    Tonsils were removed in August 2009... a few months after first severe exacerbation... or was it the second? Sorry, kind of tired. Thx for your input!

  7. Help! Strep with Lyme

    in PANS / PANDAS (Lyme included)

    Posted · Edited by browneyesmom

    DD13 recently diagnosed with Lyme. She's been positive for strep since around September. We've been fighting it all along; but, having trouble clearing the Strep, which I assume is due to the Lyme involvement, since they bind, making it harder to clear.

     

    I strongly suspect she still has strep... snoring loudly during the night & elevated PANDAS symptoms. Should have recently drawn strep titers soon. In the meantime, I'd appreciate input on how people are SUCCESSFULLY clearing it, when both Lyme & Strep are involved... as well as an immune deficiency. She has IVIG monthly for the immune deficiency and is being treated for the Lyme. It's the Strep I'm not sure how to address when Lyme is involved, since our prior effective protocols are not clearing it now. Help!

     

    We see her Ped this morning and he often asks me about that.... I posted in the PANDAS group, too. TIA for any input!

     

    Edited to add: Just saw her labs. Anti-DNase B is not back yet; but ASO is and it's elevated... surprise, surprise. Sigh...

  8. Help! Strep with Lyme

    in PANS / PANDAS (Lyme included)

    Posted · Edited by browneyesmom

    DD13 recently diagnosed with Lyme. She's been positive for strep since around September. We've been fighting it all along; but, having trouble clearing the Strep, which I assume is due to the Lyme involvement, since they bind, making it harder to clear.

     

    I strongly suspect she still has strep... snoring loudly during the night & elevated PANDAS symptoms. Should have recently drawn strep titers soon. In the meantime, I'd appreciate input on how people are SUCCESSFULLY clearing it, when both Lyme & Strep are involved... as well as an immune deficiency. She has IVIG monthly for the immune deficiency and is being treated for the Lyme. It's the Strep I'm not sure how to address when Lyme is involved, since our prior effective protocols are not clearing it now. Help!

     

    We see her Ped this morning and he often asks me about that.... I'll post in the Lyme group, too. TIA for any input!

     

    P.S. Edited to add: Just saw her labs. Anti-DNase B is not back yet; but ASO is and it's elevated... surprise, surprise. Sigh...

  9. Time to Make Some Noise

    in PANS / PANDAS (Lyme included)

    Posted

    Reposting Bulldog24's post here:

     

    Hi everyone.Hopefully you have heard by now that there is a protest being held for the next 3 days at BCH!!!! There is a child in the hospital that has PANDAS/PANS/LYME and custody has been taken away from her parents for no good reason. We are protesting for her and ALL PANDAS/PANS/Lyme kids that have been mistreated and not treated and we hope this will start to change things in this area! please like this page https://www.facebook...eeelizabethwray and read more. We think this is a day of change and could help all of our kids! I personally brought my son here and was told "absolutely not PANDAS" and "stay off the internet" and he was diagnosed at the NIH 3 months later. So this could have been us just as easily as this family. Please share tweet contact everyone you know about whats going on here. Today is the day to push this out there. All are welcome to attend the protest and details are on the page I gave. Thanks so much!

  10. Lone Star Tick

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks Mama2Alex. No, he's not telling me otherwise. He was eager to treat for Lyme. I read it on the web somewhere about this specific tick. Does Doxycycline not cover Bartonella, Babesia or Rocky Mountain Spotted Fever? I understand it does cover Ehrlichiosis, based on what another doc told me over a year ago during a discussion we had about tick borne infections. Our Ped is willing to add abx if the Doxy does not cover everything this tick carries. I just need info on what else we might need to add. I called an LLMD, who I'd like to ask, but he is out of the office the next few days.

     

    TIA for any input.

     

     

    "Southern Tick-Associated Rash Infection" IS Lyme Disease. If your doctor is telling you otherwise, you need to get to an LLMD. Here is the story of how Lyme Disease came to be called "S.T.A.R.I." in the south: http://www.psychologytoday.com/blog/emerging-diseases/200906/rebel-cause-the-incredible-dr-masters-part-1 This is from Pamela Weintraub, the author of the book "Cure Unknown." She doesn't specifically mention "S.T.A.R.I." until section IV.

     

    You'll need to talk to a doctor who treats Lyme and acknowledges that it exists (is not a "rash disease" of unknown origin) in the south to know what other antibiotics are needed. Your child should also be checked for coinfections (Bartonella, Babesia, Erlichia, etc).

  11. Lone Star Tick

    in PANS / PANDAS (Lyme included)

    Posted · Edited by browneyesmom

    Adult Female Lone Star Tick

     

    I'm not sure if this photo will post, but do you recognize her? I hope not. She's a female Lone Star tick and she was on my PANDAS child on Sunday. :angry: We're treating with Doxy for a few weeks, just to be on the safe side.

     

    In the meantime, I need some info. This tick carries a disease known as S.T.A.R.I., which stands for Southern Tick Associated Rash Infection and it can produce a bulls-eye rash as well as symptoms consistent with Lyme Disease.

     

    Does anyone know what antibiotics are effective against S.T.A.R.I., or if any are needed in addition to the Doxycycline?

     

    Thanks in advance!

  12. dysautonomia

    in PANS / PANDAS (Lyme included)

    Posted · Edited by browneyesmom

    I'm a little in shock. I completely missed this thread. I had a horrible run with Dysautonomia about 2 years before my daughter was diagnosed with PANDAS. My blood pressures were 60's/40's prone and I had to take meds to get them up to a level where I could work myself back to stable health. Thankfully, I am off those now, but I do have to drink Elete water daily.

     

    I need some time to read more and absorb this information... :mellow:

  18. MTHFR Homozygous for A1298C

    in PANS / PANDAS (Lyme included)

    Posted

    Gracious, thank you so much for all the links and input... my head is spinning! I'm trying to research this while juggling doc appts and her anxieties & intrusive thoughts (and trying to work on homebound education with her while refinancing the mortgage!), :wacko: but feel like I am only beginning to scratch the surface. It seems we now have a whole new rarely diagnosed and poorly understood condition on which I'll need to become knowledgeable... having a deja vu experience... gosh, wonder why. <_< Sigh...

     

    Further, there seems to be a lot of confusing information about the two most commonly tested mutations: C677T and A1298C and what the best treatment is for each one. Is anyone seeing ONE doc who can piece all of this together and give clear recommendations? A geneticist, perhaps?

  20. MTHFR Homozygous for A1298C

    in PANS / PANDAS (Lyme included)

    Posted

    DD12 is in her third severe exacerbation. She is PANDAS - triggered by strep and complicated by an immune deficiency for IgA & IgG. Our Ped recently indicated he thinks we might be missing something and wanted to test for heavy metals, food intolerances, etc. We wound up testing several things (not foods as she is on IVIG r/t immune deficiency, so it would not be reliable information - he recommended Feingold for anti-inflammatory diet and we're going to look over Paleo also) and are just starting to get back some of the results.

     

    For the MTHFR, she is homozygous for A1298C. I realize this means that her parents (my ex and I) are both heterozygous for this gene and it has possible implications for our health also. I know I need to look into that; however, she is the one struggling at the moment.

     

    I'd appreciate input on where I can read up on how this relates to PANDAS, immune deficiency, etc. TIA

  22. New York Times Magazine and Leroy

    in PANS / PANDAS (Lyme included)

    Posted

    Either forgot... or was misquoted. Imagine that happening with this story! :huh:

     

     

    Susan Swedo, the neurologist at the National Institutes of Health who first described the disease, has implied that she doubted Pandas or a similar syndrome could be responsible for the symptoms in Le Roy. The phenomenon is rare enough that the odds of so many students suffering from it at once, all in one high school, were almost impossible.

     

    Oh...but she already said she can't comment one way of the other on the girls, as she has not examined them. But she supposedly says PANDAS is so "rare" that an outbreak couldn't occur?

     

    Apparently Swedo forgot about this little PANDAS outbreak (or doesn't it count because PANDAS wasn't discovered yet?):

    "In the 1980s, an outbreak of Group A streptococcal tonsillitis in Rhode Island was associated with a 10‐fold increase in the incidence of motor tics (without chorea);4 the concept of post‐streptococcal tics was born. Subsequent identification of further patients led to the development of a new acronym: PANDAS (paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections).12 " http://qjmed.oxfordjournals.org/content/96/3/183.full

  23. Two Questions

    in PANS / PANDAS (Lyme included)

    Posted

    1) Yes, she had constant ear infections & ruptures, starting at 6 mos post-RSV infection (mild). First set of tubes at 10 mos & second set at almost 5 yrs. After that, went straight into constant strep throat infections. Dr. L suspects it's been strep her whole life.

     

    2) No... we're looking into some other things currently, though.

  25. Dr. T's latest

    in PANS / PANDAS (Lyme included)

    Posted

    Update: I thought I posted this on this thread already, but apparently it was in a dream.

     

    Dr. Cunningham is in early stages of preparations for her CLIA approved lab, hoping to be open this summer. They will provide antibody testing for autoantibodies associated with:

     

    • Tics

    • OCD

    • PANDAS

    • CANS

    • PANS, which encompasses all these conditions

    • Sydenham chorea

    • and other related brain disorders

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