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Kimflow

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Everything posted by Kimflow

  1. Momcap and ALL, That is us....recent oral stuff coming out as well as urinary incontinence Daytime only! I am wondering if we aren't just uncovering a bunch of lyme(parasites) and getting these symptoms. Cyst busting with alinia and biofilm dissolving with herbs and lumbrokinase and whatever the carnivora does...cyst busting and antiviral maybe?? Alinia is antiviral. Maybe time to slow down?? I just don't know the right answer. Momcap, what are you doing that you think contributed to chewing and urinary incontinence? Thanks for all the ideas. My llmd appt. was rescheduled next we
  2. On third month of Alinia (3 weeks on and 1 week off) and also had 3rd HD IVIG. Started Valtrex titrating up slowly 3 weeks ago. On Augmentin and Zith. for Pandas. On antifungal. Some things ...not all though as we have had some gains for sure.....are getting worse over past several months...urinary dribbling that came for sure with PANDAS is now urinary incontinence during day only. There is also recent development of occas. shirt chewing (never seen before but heard of), and alot of things going in mouth. Could this be because we are killing off Lyme??? Stirring up lyme? Any t
  3. Hi, I have searched old posts and now I am hoping someone might have something to suggest to me. I am out of ideas. When the PANDAS started, we had some intermittent urinary dribbling during the day. A panty liner sufficed. After first HD IVIG, everything remained the same. We started Chinese herbs in addition to antibiotics/antifungals,antiparasitics. Everything was really shaping up and then added artemesia and it all fell apart. urinary dribbling increased at this time requiring regular flow women's sanitary napkins. The panty liner no longer was adequate. I stopped Chinese he
  4. Hi, I have searched old posts and now I am hoping someone might have something to suggest to me. I am out of ideas. When the PANDAS started, we had some intermittent urinary dribbling during the day. A panty liner sufficed. After first HD IVIG, everything remained the same. We started Chinese herbs in addition to antibiotics/antifungals,antiparasitics. Everything was really shaping up and then added artemesia and it all fell apart. urinary dribbling increased at this time requiring regular flow women's sanitary napkins. The panty liner no longer was adequate. I stopped Chinese he
  5. Hi, We used Lauricidin in the early autism days. Little balls that taste like soap. Better to swallow and not chew. Possibly since you have been on Valtrex and lowered the viral load, the Lauricidin might do the trick. I too have been looking into antiviral options and if you search Julia Faith's posts, she has more options that she discusses. Don't forget copious amounts of coconut oil...also antiviral.
  6. Cobbie, can you share how things seem to be going after the first 2 IVIG's? Thanks,
  7. Hi, So I think the consensus I have read is that for most PANDAS kids high density is the way to go. But now how often to repeat? Would you all share your current PANDAS docs rationale on how often to repeat every 4, every 8 weeks or whatever? DR. K and Dr. T and DR. B and Dr. L......at what freq. do they dose and how do they determine they need to change freq. I have read that every 8 weeks as any sooner can cause the immune system to flare sort of. I ahve also read every 8 or more to allow the IVIG to do it's work over period of more time. Then there are those that say e
  8. I think we have the same infusion pharmacist :-) So did you use Gammunex through them and then switch to Gammaked two months ago with no problem??? Thanks.
  9. Hi, This is double post: Spoke to infusion pharmacist and they have switched to stocking Gammaked instead of Gammunex. They tell me that both Gammaked and Gammunex C are identical and produced in same facility. Has anyone had any exposure to this yet. Apparently,t he pharmacy transferred all of their patients on to this Gammaked. Again, reported to me to be identical to gammunex. Was told it had something to do with rigamaroll that they had to go through with FDA when they made product for Subc. or something like that. Thanks.
  10. Spoke to infusion pharmacist and they have switched to stocking Gammaked instead of Gammunex. They tell me that both Gammaked and Gammunex C are identical and produced in same facility. Has anyone had any exposure to this yet. Apparently,t he pharmacy transferred all of their patients on to this Gammaked. Again, reported to me to be identical to gammunex. Was told it had something to do with rigamaroll that they had to go through with FDA when they made product for Subc. or something like that. Thanks.
  11. Hi, So this is disturbing. We have United Healthcare. In the paper that you have, does it discuss Syndehams chorea for approved use of IVIG? Thanks.
  12. Please proceed with caution.........read of others experiences before you jump in. There is the issue of Cerebral Folate antibodies to consider. I too believe that it may also actually inflame the body if you do NOT drink it in high enough amounts. (Edited : I meant if you do NOT drink it in high enough amounts, I believe it may overstimulate the immune system/inflame). Proceed with caution. you can PM me if you have further questions.
  13. I would appreciate a Personal message reply as well on the J clinic if you have the time. Thanks.
  14. Does anyone have a list of intracellular, extracellular, and cyst fighter antibiotics? Thanks.
  15. Thank you for everyone's responses. I guess the next place I have to call is the insurance company because as long as UHC will still pay for the IVIG pharmacy part, I can pay for the "nursing iv administration part". Tiffany, I just know that for my "type" of United Health care this is what I was told...they will pay for the first IVIG in the office but all subsequent IVIG's must be home administered.
  16. Hi, We are going to see Dr. B in Sept. My son has already had 1 IVIG in a doctors office locally prescribed by another pandas doc. 2 months ago. Now United Healthcare requires all subsequent IVIG's to be infused in home. How does this work when you consult another doctor? Has anyone been to see Dr. B out of state and then had him order IVIG. Will he treat you if you are required to get your subsequent IVIG's in your home per United Healthcare. I would really appreciate someone letting me know how this works. Thanks. Editing to ask this also.....Does Dr. B used emla and V
  17. Hi, ANyone have any insight on why titrating up LDN would lead to asthmatic cough. I do know that the LDN may cause cold like symptoms but how long did it take to level out and see immunomodulation benefits? Thanks.
  18. yes, I just found it. Oral magnesium feeds spirochetes. It was a Mercola article with Klinghart. You can yahoo search it.
  19. Nancy, this is going to be of little help but maybe some. I remember in my reading everything I can that oral magnesium feeds something.....I just can't remember what but it was lyme or one of the coinfections. Blame on it on Lyme brain maybe or stress, but I can't remember what. I remember when I read it, I said thank goodness I only give epsoms salts baths as my source of magnesium.
  20. 1tiredmama, Sorry you are having this stress on top of everything else. I hope you can find the strength to keep pushing through even though you feel like dying sometimes from all the stress and pressure and setbacks. I understand...years of stress, wanting crystal balls, seeing kids suffer, I get it, we all get it. Hold on.... K
  21. How do you make determination when to take child back in for swab. We are currently on Augmentin, Zithromax, and ALinia. Son has been having very slight asthma in the evening for 2 nights...no treatment necessary. usually he only gets this with a cold. I have been seeing PANS symptoms flaring to the point that they were when he had the first strep throat and subsequent PANDAS. I do not see any complex tics or changes in chorea. But in initial strep throat and PANDAS, those didn't come for a while. He also has felt warm to me for past several days but no other symptoms.
  22. Does anyone have a list of viruses that are tested for with kids wiht Pandas/lyme? So far, I think we have only tested for EBV. We have labs to be drawn soon and since we are still struggling with the PANDAS symptoms, I want to ask to add some of those viral titers to the testing to see if that gives us further information. In addition there was some discussion on her regarding high lymphocytes indicating viruses. It seems that most of our kids have high histamines, low neutrophils, high lymphocytes from what I have been reading on this board. Sometimes I feel like I am spinn
  23. Nancy, No real advice for you but if you are trying to supplement magnesium and oral mag. feeds bartonella, then how about epsoms salts baths???? WOuld she tolerate that? I am sorry you are having a hard time figuring out the magic combination of healing. We are too.
  24. We too were told to remove tonsils by Dr. L and our experience was similar. Huge pandas flare started on day 4 postop even though we had given iv antibiotics and stayed on po antibiotics afterward. I would not mess around........get to the doctor who will prescribe you additional/different antibiotics, whatever you need. I would try on Monday to call office...tell them he is in flare from tonsillectomy and tell them you need a response THAT DAY. If they don't come through, get to the next best person who will help your son. We are still in the flare from the tonsillectomy 8 w
  25. "Nystatin is an antimycotic polyene antibiotic obtained from Streptomyces noursei" I have asked this question before: if some probiotics with strep. species in them can cause problems, how come no one is concerned that nystatin obtained from streptomyces. I guess not significant??????
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