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Everything posted by Bat_Sheva_Myllys

  1. I had the same thing myself. Clearly caused by Mycoplasma Pneomoniae. Crazy pulse, bouts of terrible weakness (gelled legs), total lack of energy, and it was all gone after several weeks of Azith! And those of you who know me know I am the care giver, not the PANS patient! As for the shooting pains, both Sandra, the patient, Sharon, her older sister and I have them. Ibuprofen helps (if unlike myself, one is not badly allergic to NSAIDs). My then GP (now retired) was amazed with the EKG but trusted my experience and knowledge and noted the slight disturbing cough, like a hair in one´s throat I
  2. Hi

    The guy used to be good looking, then got very heavy, had a gastro bypass of sorts and looks deflated as far as I know

    Same goes for his wife - a nurse by training

    I know several addresses for him, one is indeed a gmail

    I think he is good

    we did not see him because we are in Finland, but have been in touch by mail and he provided me with info I needed,

  3. Another Dr. whatever-his-name-is coming from nowhere to claim the crown of PANDAS, and probably suffers, like so many others we have met and paid to for their less than professional ego-inflated damaging opinion, from a condition called "imaginary expertism identity disorder", thinking he is a leading medical scientist who has done nothing but research this mysterious condition. Some clear symptoms of the condition is the tendency to claim expert knowledge of anything a patient seems to have, never admit you are not familiar with a possible condition, esp. if rare, not yet well known, and the
  4. Anybody got a proven e-mail address for Dr David Pisnky? I do not want to write the CNN general box as I do not trust he will even get it this century. I strongly feel that care more about the item and far less about the girls and that he (Dr Drew) is doing what his director is telling him and not acting according to proper medical logic. BTW, could sb send the piece of info Dr T was allowed to mention on-screen to the PANDAS-Strep camp and esp. to the one who keeps telling us PANDAS is the name and Strep is the only proven cause.
  5. The first time Sandra got Clarithromycin (macrolid abx often used for Myco-P) was in the autumn when she started symptoms in May and the Myco-P was clearly visible in March-April. That one week doze did almost the entire job (we followed up a few weeks later with 60 mg Prednisone for a week) - after which she was totally back to herself for a whole year. When the condition returned full flare in the following autumn she did not react to short abx or steroids and not to 3 months of steroids but did react greatly to IVIG. We did not know then about long term abx. Unfortunately her IVIG was stop
  6. Have been trying to hammer this exact point for some time now - enough with this PANDAS and Strep tune. For some time I have said it is harmful not to use the name PANS and have PITANDS and PANDAS follow it, as they are the ones people are familiar with. Have said again and again that when doctors do not care to read and learn and educate themselves, we end up with patients denied proper diagnosis and treatment and getting wrong treatment which may well be harmful. We do not even know if leaving a patient untreated for too long may be harmful for life! Have been having it hard with Beth Mel
  7. 2 years of on going Azith 500mg/day Down from 0ver 200 to 39 (35 is the border here) in 6 months, first noticed 50% drop at 3 months but ease of symptoms from the start in very small portions, but still going on! + NAC, Glycine, B-vit, multivit, Omega3, lots of love and support and encouragement for cognitive and behavioral improvement and doing our best to make the setbacks and bad things a matter to handle or challenge or simply let them go by. It helps a good deal, both her and us. This requires a lot of patience!
  8. I repeat, unlike what they learn at med school, Mycoplasma Pneomoniae IgG does not mean old infection, it means it is in hiding but active and can keep rising if not treated, and is most likely the main if not the only reason for your sons problems. This story sounds so much like my Sandra's 6 years ago. For the past 2 years she has finally been put on Azithromycin 500mg/day (she is now almost 22 yo) and it has made serious miracles, not yet recovered, but she is back on her feet. I would say abx and IVIG. Search for my writings on the forum for the full story or contact me privately. We saw
  9. Allow me to correct some bad misconceptions about the condition (I do not want to use PANDAS ir PITANDS or even PANS because it is not limited to Pediatric, so as to say children) and I am tired of (1) Based on my Sandra's (got ill at 15.5 now 21) experience, - Mycoplasma Pneomoniae causes exactly this condition - IgG does not mean an old infection that does not need treatment. If symptoms are present it has to be treated and suitable long time antibiotics is the right treatment. we know exactly when she had it but did not know what it was wheb she had it - thus it can very well be tha
  10. This can be anything and one must not jump to conclusions but check and try starting from the easier to check and treat (one valid way of checking is reaction to treatment). Remember and remind your medical professional medicine is not a black-and-white case of absolute knowledge. Based on our experience, negative Mycoplasma test does not mean there is no infection. An ongoing cough may mean one of several and can be figured probably up to a certain level of certainty. The above intends to say My older (24) non-PITAND had for some 3 years long bouts (lasting months) of low fever, weakne
  11. Even if the name used is changed to PANS there is still a problem with Pediatric. Sandra got ill at 15.5 and was sent to adult neurology for tests and they knew nothing and still, after 6 years do not know a thing about the condition (but the same must be said about the pediatric neuro here). What do you do with people who develop the condition at a later age and still fit the rest of the profile (which is best described as reacting badly to psycho medication but very well to antibiotics, steroids, IVIG and PEX)? AANS? This petty name issue is far less essential than the fact that these p
  12. Differentiating between Strep and Mycoplasma Pneomoniae or even Lyme is absolutely artificial and caused by methodological history nore than anything else and it is certainly about time the name of this condition is changed. It is not Strep exclusive, Strep is not "superior cause" of it and it need not be pediatric. Seems some parents are more obsessed with splitting the population into the real PANDAS and the less real ones than their children are made to be by the condition. What I find dangerous is this obsession because it hurts and because there is so little information availabl
  13. Based on our 6 years of experience with a real bad case, psychiatric medications do nothing food to PITANDs/PANDAS symptoms. When Risperidon drove her absolutely crazy and mental we did use very low dose of Paroxetin to calm her until the weaning was over. Otherwise, we found helpful with ALL PITANDS/PANDAS symptoms antibiotics (Azith, going on for more than 2 years now), IVIG (cannot get any more), and we are using NAC and Glycine. Improvements are very slow, very small, but they are real. Bathsheba
  14. Our Sandra started Azith 500mg a day ca 1.5 years ago, but either the prescribing GP who is the only MD supporting us here in Finland nor I know exactly how to proceed. We were hoping to be supported with the necessary info. We could not get any IVIG again (last one was done in 2007 and the neurologist who did it got enough of treating this unknown condition and threw her to the psychiatrists who could not get themselves to believe PITAND or PANDAS existed. When the situation was gravest we thought trying Azith could do less harm then psycho medication (which did lots of harm and only that) or
  15. Instead of an answer I too have a question regarding Azith long term. Those of teen and adult age doing it, are the patient taking 500mg daily and how long for? When do doctors who treat with Azith recommend to cut the doze and in what way? Our Sandra started Azith 500mg a day ca 1.5 years ago, but either the prescribing GP who is the only MD supporting us here in Finland nor I know exactly how to proceed. We were hoping to be supported with the necessary info. We could not get any IVIG again (last one was done in 2007 and the neurologist who did it got enough of treating this unknown co
  16. Based on Sandra's 6 years experience with MycoP - IgG positive means that MycoP is hiding somewhere in the body. It is rising because the bacteria is right there and can be noticed, and if not treated by long term serious suitable abx, it will be there and keep affecting both. Sandra's IgG kept rising from 60s (35 is the positive border line here) right after the actual infection (we could not avoid noticing its persistent signs) up to 200s after several years and its level went down each time she was treated with abx, Prednisone or IVIG, and when not treated for 2.5 years at all it got to it
  17. ---Mycoplasma Pneumoniae antibodies IGG number doesn't sound like the numbers others are reporting on this board. The report says that the IGG reference range normal is <0.090 and her IGG lever is high at >5.00. Others here are reporting IGG levels in the hundreds. Is this just a difference in the lab running the test? **I would say it is. I am quoting a Finnish lab figures, seem different from US lab figures. Compare your results <0.090 and >5.00 ratio x55 to our at the time 30 and 200 x7 I think you want to recheck is the min figure you stated ehre a ty
  18. My replies are based on our experience with Sandra (look for my old messages for the whole story). --What would you do or think about a 677 myco p IgG (>320 is positive)? I am certain MycoP IgG means an on going infection. The bacteria is hiding and active. We had the same thing. Positive here is over 30. After the first rounf of abx and short course of PRednisone, which earned us a whole good year, the next time it reappeared after a resp. infection the Myco P IgG kept rising irrespective of treatments with short term antibiotics, long term Prednisone and IVIG. Doctors ignored, but I k
  19. I am sure Buster's list is most valuable but I cannot find any helpful info there for this particular problem. I did nto ask for researchers but for patients who ahs been on long term Azith and if possible for info on their process and treating doctor. One must distinguish between Research and Treatment. I agree that the way the Finnish medical ystem is negatively responding to the condition and to the idea of approaching medical professionals abroad is not easily understood and confuses those I tried to draft to help us supporting the need for more IVIG,I agree that ideally "--seems all
  20. Thanks for the idea Van you be more speciffic regarding those groups in Italy and the UK. As to the US based doctors, I have tried to contact many. Of those very few who replied at the time we were trying hard to get IVIG and needed support, seemed terribly busy and not very eager to be active. I waqs hoping to have info on other cases and maybe also info on those doctors who treat that way, so taht we would know to contact them, or even a helping hand in getting their consent to support our GP.
  21. I am trying to get some insight into the future ahead and would hope to hear from others whose patient has gone on long-term abx, both those who have completed treatment and those who are still doing it. I will be most interested in Mycoplasma Pneumoniae positive (preferably highly positive) cases. Sandra (20, almost 6 years of this debilitating condition - history told here in earlier posts) has now been on Azith for almost a year. Mycoplasma IgG down in 6 months from 200 to 39 (normal=35) and symptoms are improving slowly, inch-by-inch and fluctuating. We are all on our own with our brave G
  22. After close to 6 years of struggle with PITAND clearly caused by MycopP and a very reluctant medical establishment but for one small and very brave lady GP, we ended up with treating our now 20 years old Sandra with Azith 500 mg/daily starting of January 2010. We noticed her PITAND symptoms as Mycoplasma Pnaomonia sy,ptoms started not long after she had Influenza. Throughout the years we had good (some very good and rather long lasting) but not permanent results with abx, Prednisone and IVIG. Throughout the years Marjaana (the GP) and I noticed that DD's MycopP IgG kept going up while reacting
  23. Based on our experience with Sandra it means that he should be treated with antibiotics long term. We too have heard all sort of opinions that tried to sound highly educated on her ever rising MycoP IgG (her white cell count too was slightly eleveted all that time - 5 years but most doctors did not care much about it either... ) My hunch (and our very brave GP tends to agree with me) is that the more "specialised" the specialist is the more likely one is to stick to the safe and known, even when it is not very logical. Active thinking is not always part of the highly structured "protocol" and
  24. Here is the link http://neurophilosophy.wordpress.com/2010/06/07/the_neuroimmunological_basis_of_hair_pulling/
  25. Sandra (very DD 20) got MycoP at 15 and developed all possible symptoms. She never tested positive to Strep or Lyme. She first reacted extremely well to short course with ABX (Clarithromycin) and Prednisone and got totally well for a whole year. Viral respiratory infections have a year later retriggered the condition and short Azith and Prednisone and later, a long course of Prednisone no longer helped, nut IVIG did work extremely well and was highly effective for ca 4-5 months, till treatment was delayed and ear infection caused a bad relapse. That was back in autumn 2007. Very bad sympto
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