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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 had, so the prescription was given right away. Sandra has been on 500 mg Azithromycin daily for the past 3 years. She is not well but is better than the lowest point at which we started Azith and is stably so. She has her ups and downs, but is no longer bed ridden. Still a very long way to go. Still cannot be left alone at all, but when we get the "engines warmed up" she does her best to help at home, reads a bit, can once again watch TV, plays the piano, plays with the dogs. Improvement is very very slow and slipping back is the norm, but we are happy as we do keep going very slowly forward, if our balance is not at the plus side, it is at least not on the negative one either. One learns to be satisfied with very little things...
  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 like, an obsessive search for fame, status and riches and compulsive tendency to jump before every reporter, esp. one with a camera and verbally present oneself as God's second in command. Any idea if this can be treated with ABX, IVIG, PEX, Steroids or could this be related to conversion disorder or sorts? I am afraid such individuals are highly dangerous to society and themselves.
  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 stopped half way and the condition returned once more following an upper respiratory tract infection and ear infection. About 1.5 years later (during which we tried psychiatric medication that wracked havoc making her totally psychotic) we started Azith 500mg/day and are still going on with it nowadays - more than 2 years later. She is not yet well but the difference is amazing and the general direction (although we do experience backslides and bad days) is positive. It took a long time before Azith effect started really showing marked changes in symptoms - and her IgG to Myco-P followed the trend. 50% down in the first 3 months and the other half down to the lower of positive in another 6 months. In those she turned from a totally bedridden psychotic to partially functional to the point that she can do things around the house, read a bit, sometime even (on good days) practice karate and play the piano (gut pain at a certain same spot which seems to be the area where the small int. meets the large one are still present and so are bouts of pulling her hair, getting "stuck", far more limited ticks than what we were used to, etc.), walk the dogs in our yard and on very special days around our small crescent, she no longer needs sb to walk her by the hand, no longer have me tied by a rope to her.She need not be told to eat. What I am trying to say is that one must be PATIENT, very patient. There are no miracles in this affair. In any case, based on our 7th year experience, I now know that I should never react hastily, not listen to doctors who know less than me but speak without thinking about issues they are not familiar with and that abx really works for her. Additionally she takes Glycine and NAC (Solgar) and B-vit. She is on no psychiatric medication. I have accepted the fact that my life mission is helping her get to the best functional state possible - and this decision has made it far easier for me to last this time. I learnt to see the good times and treat the bad ones, and keep her spirit high - she is going to be 22 in 2 weeks. Has been ill for 6-7 years and still believes she will get better and functional enough to go back to school some day (not being able to attend, she left school in the middle of the 10th grade). I do a good deal of daily cognitive practicing with her, not telling that is what I am doing but even washing the dishes or handling the laundry or cooking and baking (in which she likes taking part) are a manner of improving things as I give her small tasks and responsibility (but make sure the stress level is not overwhelming her) and keep the spirit high. Every time she manages to do something well she is rewarded emotionally and learns to reward herself. Every time she fails she is told it is OK and that it will only get better. No angry reactions or crying over such matters is supported. She learns to concentrate only on the positive points and moments of the day - and that too helps. If she is asking to use the PC for reading and doing dictionary work (we are still on the first Agatha Christie book we started almost a year ago) I reward her for taking the initiative (meaning I need not tell her to do so!). But the main issue for parents is PATIENCE. Flow with the process, support it, and ACCEPT that it is what it is while NEVER give up hope and instill that in your patient. And a good piece of reading is a book by Dr Groopman called "The Anatomy of Hope", which does help in figuring that no matter how bad a situation is, one should never give up hope which is based on realistic thinking. Give Azith time to work and look for the small changes. The chance is that the big ones will only be a sum of the small ones.
  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 Melony lately over her insistence on telling the entire world about PANDAS and Strep and her son's great recovery - and asked her to use her campaign and acquired popularity to preach PANS (PITANDS of which PANDAS seems to be just a sub-group and all triggers we know of including bacteria and viruses) but she would not. Read this one more time "Dr. Mechtler told 2 On Your Side's Melissa Holmes by phone that he ruled out Pandas because it's associated with Strep and only one girl had a throat infection. Furthermore, he says, Pandas only occurs in pre-pubescent girls." and help me drive in the right message - it is time we all used the best name available - PANS (PITANDS / PANDAS) and have Strep listed as one of the various assumed triggers and make it clear one need not have an actual infection, esp. not in one's throat! If we want to ensure patients receive serious treatment by doctors who care about treating and not about talking and having an ego trip, we should speak correctly. I have heard this very same sentence about my Sandra from similarly prominent doctor (in Finland) some 5 years ago, (and throughout the past 7 years). This made her try Psychiatric Drugs which made her worse, this delayed her antibiotics treatment by more than 2 years. This denied her additional IVIG treatment. this most probably has crippled her for life! I hope I can still save her and bring her back to normal functionality level. Now, so many years later, not in backward Finland but in the promised land for PANS, the USA some doctor (and not one, a good few of them) go on TV and speak irresponsibly, just because they have a medical degree. When writing and talking we need to remember what really goes on in the medical realm - not only research and treatment and care but also competition, internal politics and ego trips. What we need to understand is that we can change this. These doctors read what parents write, not only what other doctors write, they also listen to what some parents speak - and they repeat. Whenever we speak and tell our own story, we must remember that it is not the only one and that the more we learn about the condition the more complex it seems to be. No one of us has the right to harm the chance for any patient to receive proper treatment!
  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 a drop of 50% in her IgG in 3 months and in her symptoms much before that. her IgG went down to low positive in 6 months and she is still on abx! I saw fantastic results when she got IVIG but we cannot get it any longer. She never tested positive for Strep or PycoP IgM!!! Bathsheba
  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 that your child's cough is no croup ut simply an on going chronic MycoP! Sandra's IgG post infection in 2005 was some 65 (limit is 35 in our lab). from then on it kept rising and reached at the peak more than 200. It always reacted to abx, the first steroid and IVIG treatments. It always went back up and kept rising when not treated. When we started long term Azithromucin 500/day it was over 200 and the symptoms horrendous. After starting she started getting slowly better, IgG went 100 down in the first 3 months and after another 3 down to 39. It can still rise when we try to lower the dose or when there is an infection (and symptoms rise with it). 3. Sandra never had Strep of any sort and no one of us tested posiitive either. (4) I had MycoP a year before Sandra got ill and the medical documents I saw this autumn do indicate the kids had a slight cough but the doctor thought nothing of it. (5) Hubby tested over 100 IgG for MycoP and we saw strange symptoms of weariness. 1 month Azith had a good effect. (6) For the past 3 years on top of Sandra, our older girl (24) had several months a year of sinus infection (Sandra had exactly the same symptoms but they were gone once we started the long term abx), on going below 38C temp, weariness, complaining her head was not clear and she really had difficulties with her university studies and lost some courses. she kept testing negative to Mycoplasma Pneomoniae! Took some real fighting with unbelieving doctors to finally have one who was on call here only for the weekend to think this may be immune related. Then I did some more fighting and had her referred to the infectious disease clinic at the central hospital, but it took them months to invite her and in the meantime I managed to convince one doctor who is more interested in Sandra's condition then others to read an article on the immune modulation properties of Azithromycin. He agreed we could try and we had a prescription for 3 months. Took exactly 1 month on Azith to get her back on her feet and it has so far not returned, even when we had a bad wave of MycoP in Finland late this autumn and I had a disturbing cough, like a hair in my throat, which after 3 weeks this same interested GP decided to treat with 6 days on Azith... Sharon did not get it again, I got well. Conclusion? It may well be MycoPlasma even when lab tests are negative and IgG tells you the bacteria is hiding but is certainly active, only not very much so. It is simply waiting for a chance to get back to higher level of activity when the conditions are right for it. (7) Expressions like "PANDAS like symptoms" - they are not correct. Pandas is not more valid than PITANDS or PANS and I would remove the P altogether. Ask your pediatrician to try your kid on an appropriate dose on Mycoplasma Pneomoniae suitable abx for long enough and see what that does. I still think IVIG could help on top of that. Saw what it did to Sandra but we cannot get it any longer "thanks" to the way the Finnish health care system functions.
  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, weakness, difficulties to concentrate, and YES, ongoing slight but sufficiently disturbing cough, which lasted each year some 3-6 months and no one managed to figure, until one doctor on clal at a weekend suggested to me an immune related issue, and hearing Sandra's story, agreed with me that Mycoplasma could well be one option. Using an article on the immune modulation properties of Azith I managed to convince our GP to prescribe Sharon Azith for 2 months. She took it for about a month only because we saw reaction right away and once fever got back to normal and energy was restored for 2 weeks without exception, there was no reason to continue, and the problem never came back. I had a case of coughing this autumn while the papers informed of a bad wave of MycoplasmaP, so after coughing for about a month I got the GP to try abx for a week - and I am well again. What worried me during that week was not only Sandra (PITANDS), who is still on Azith 500mg/day but the fact that I suddenly started suffering from tachycardia for no visible reason. One week of Claritromycin and the whole strange affair was over, the conclusion is obvious. This was Mycoplasma. As to your son, get the ped or GP try mycoP suitable abx. for long enough a time (based on Sandra´s IgG case, it took 6 months to get her from over 200 down to 45!) if the coughi is eased or seems to go away, you got the answer. If not, try OCD med or cognitive therapy. Do not forget to consider other causes (because there is great danger that one diagnosis blinds both doctors and parents) and check for other infections, allergies (anybody in the family is allergic?), food, plants, pollen, animals? The last thing one should do is guess a cause and ignore all other options. That is why one very stupid neuro+psychiatrist in Finland told Sandra in 2009 that her cough in 2005 was not MycoP (ignoring the lab results because it was IgG and not IgM...) but an OCD. Remember, inasmuch as we parents can be stupid and hysterical in our reactions so can doctors be, the more stupid ones among them sticking to algorithmic thinking for "religious" reasons and being totally blinded by their area of specialisation and other factors research on medical thinking and mistakes indicate.
  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 people (is 21, going on 22, even if badly disabled by this condition a kid any longer?) should be correctly diagnosed and treated. The "best" reasoning I heard from a pediatric neurologist turned psychiatrist way back in 2007 who diagnoed Sandra as suffering from anxiety (daaah, how easy it is to name one symptom as the condition... saying this could not be PANDAS because she was already 15.5 and therefore not pediatric and because she has always tested negative to strep (and besides he knew everything there was to know about this condition because he read all articles available) so he suggested she suffered from anxiety because 10 years earlier her older sister was bullied at school. Poor guy knew nothing about the subject, no idea of the infections (and why would anybody think of leaving them out???) and made poor Sandra take psycho medications that made her far sicker than she ever was and who knows what proportion of the current problems we have to struggle with are the result of his ignorance. Bathsheba
  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 available to medical professionals in the publication realm, campaigns such as the Melony ones and claims alike can and had doctors reject non Strep cases. For some reason people have a sick tendency to put their world into lockers and pigeon holes even when that may be harmful. It can cause patients the denial of treatment! We do not split cancer patients into more and less valid ones, even if the causes to that condition are highly varied and many still unknown. We do not tell man with breast cancer they cannot have it because they are men. but for some sick reason we do fight (on this forum) over the unjustified question of who is a valid patient suffering from this post infectious neuro-psychiatric autoimmune condition instead of investing our time into helping our children (mine is already 21) and those who treat them, and those who research the phenomenon, and to get the medical community and the general public learn the condition exists and has to be helped. This condition is a post infectious neuro-psychiatric autoimmune condition. Bathsheba
  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 no medication (her condition was real bad, most of the time she could not get out of bed or control herself at all). It did not take too many weeks to see improvements, including the absolutely high IGG level for Mycoplasma which started to declineand was down to the threshold level in 6 months. Some 3-4 weeks ago I decided to see if she would relapse if I were to cut the dose down to 250mg daily - so far so good and the slight improvements continue, but I am not sure we did right to lower the dose and neither would my GP know. Would be great if those who have longer experience on abx, esp using Azith could share it with the rest and if those treating PITAND with AZITH could share with me off forum (rules must be observed) could share with me their MDs names and contact details (both phone and e-mail so that we could ask for help - we are of course ready to pay for good support) we shall be forever indebted. Bat-Sheva and Sandra
  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 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 no medication (her condition was real bad, most of the time she could not get out of bed or control herself at all). It did not take too many weeks to see improvements, including the absolutely high IGG level for Mycoplasma which started to declineand was down to the threshold level in 6 months. Some 3-4 weeks ago I decided to see if she would relapse if I were to cut the dose down to 250mg daily - so far so good and the slight improvements continue, but I am not sure we did right to lower the dose and neither would my GP know. would be great if those who have longer experience on abx, esp using Azith could share it with the rest and if those treating PITAND with AZITH could share with me off forum ( rules must be observed) could share with me their MDs names and contact details (both phone and e-mail so that we could ask for help - we are of course ready to pay for good support) we shall be forever indebted. Bat-Sheva and Sandra Asith has done her lots of good but we are worried because we
  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 its top in teh 200s, and then, once we started Azith 500mg/day it got down to 150 in 3 months then to 100 and all the way to 39 in 9 months. I think it is about the time physicians changed their way of thinking about MycoP. I still want to try Azith on hubby, whose IgG was last year in the 100 level, but he was not treated because he is on another type of very long term ABX (several years already) for post cancer infectious side effect. What we need is some serious doctors in this country. So far Sandra is the only treated case of PANDAS-PITANDS I know of and all we have is one GP who takes us seriously. Specialists find it too tiring to bother. The most important thing is that now, after 1.25 years on Azith I can see a great change in cognitive ability and OCD control - the condition is far from good but not as horrific as it used to be. Took her a full hour to get dressed and another to get to the door, but she was on the yard for 1 hour today with the dogs, playing in the snow, and called me on the phone only 5 times, but she got up and walked without help and she went out alone (with the 3 dogs) and was happy to do so. Life is smiling at me once again. Get them on abx!
  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 typo, or else, contact the lab and ask. If your figures are right your child's IgG is rocket high. We are using Azith 500mg/day now for ca 1.5 years. It is effective! we got down from 200 to 39 in 9 months. --Her IGM reference range normal is <770 and her level was high at 1,177. The only other thing abnormal was a high C3D at 18 (normal 0-8). Also, got her CamKinase back last week and it was 158. The rest of it wasn't ready yet. **Not a medical specialist but 6 years with this taught me IgM is irrelevant because IgG is the post infection indicator and it too requires treatment, and unlike what many doctors think, it is the important indicator and it can be treated. --For those of you who have dealt with Myco P. what has been your experience? Also, is this something I should be testing the rest of my family for? Both of my boys also have PANDAS but not nearly to the degree that my daughter does. I have so many questions. I feel like I am starting all over again. So confused....... ** Azith and long term **Test the family, and treat if possible See what I answered eysterday to SaraJane http://www.latitudes.org/forums/index.php?showtopic=12992
  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 kept statistics and it was obvious that each treatment sent it lower but not sufficiently and then it kept on going up, until 4 years later it was at 200!. We only ahve a GP who believes in us and keeps helping for the past 6 years. We started Azith 500mg/day (she was 19+ at that time). Took 3 months for the IgG to go from 200 to 120 and another 6 to go down to 39 (30 is the pos-neg border). And it was also obvious that the longer she took the abx the clearer her head got! We are still Azith 500mg/day and do not intend to stop. Things are not yet OK but there are significant improvements compared to the absolute disaster we had for almost 3 years since ehr last IVIG. --Can it be zith resistant? No. You just have to keep on hitting it with Azith and use a sufficient dose for long enough time. Anyone with similar IVIg response that had a myco p co-infection showing with high IgG? -- See above. IVIG always helped, but it has to be given regularly and I am now certain none of these alone is effective, only we cannot get IVIg any more. The Finnish system will not pay and when she got 20 her insurance expired and wven nefore that they were not going to pay for experimental treatment. We are the only known case in the whole country. There is one young boy with high Myco P who is possibly PITAND too, but unlike Sandra he did have other behavioural issues before and I do not think he is being treated. His mother called me only once. --Since hubby has had 2 neg myco p tests, should I let that one go where he's concerned? (I'm all paranoid about chronic.) Negative as in IgM or IgG? Anything else (other than Lyme) that I should think about? That's already in my mind but I have myco p result now. -- Myco P is quite sufficient. WE had Influensa A followed by clearly active Myco P - and then a month later the PITAND was clear. Absolutely nothng for 15.5 years before that. I had Myco P the previous year but the girls did not get it. We also tested the entire family, when we tested Sandra's after 3 months of Azith. Mine was 45, the older daughter's negative but hubby was almost a 100. Pity we could not put him on Azith because he is already on another type of abx for years now due to cancer related side effects. Could not test the dogs, but Sandra's was coughing last year and we finally got other on abx and the vet put her on it noce again just last week because she was coughing. The vet takes me more seriously than most specialists! --It's tricky too because I trust my dr but this is MY KID. And we did IVIg already, which is a bit scary. I am under the impression that IVIG should be done as first full treatment (certain dosage per body mass for so many days) and then o9nce a month a maintenenace one day for as long as it takes, 6 months or evem longer. Hope this is of help. Ask more if need and write on Forum or off, whichever suits you best.
  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 should be willing to contribute!", but have to say sadly that this is not the situation and that some of the responses I got in the US, not only from Swedo and her team (who were not one bit interested in Sandra already 6 years ago, because she was not young enough for their interest and had Mycoplasma-P and not strep), if I get any at all, are disaoppointing and I cannot tell of other enthusiastic doctors either (long ago 2 of the "bigger" names responded after I very diligently sought them, but that was for getting the IVIG "project" and they did not kept with us for more than one or two friendly messages). I am trying to help my GP who is all alone in the battle and locate support and had friends in the US calling a few to ask for a reliable e-mail or snail mail address for our GP to write to, but was given very strange replies but no address. My GP is not within the public system and is doing it all at her own free time and limited resources, so I am doing my bit to help her have the information she needs. We are a team trying to save Sandra. You mentioned "Church, Dale, and Giovanni for a start--" - any links to info as to what they ahve done? Contact details? I have so far found nothing on what they did or do in relation to PITAND. Are there no other long term Azith patients in this forum?
  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 GP (Finland). No chance for interest by specialists and no way of getting IVIG or the like as the specialists in the system are not interested. Not having specialist support on the Finnish front, I would like to get it in the international domain. Earlier this year, when we were trying to get the reluctant Finnish system to agree to IVIG in addition to the abx, I tried pooling several specialists to support our request, but as the issue died, so did the communication. In addition to information on case experience, I would also hope to get our loyal GP some specialist support, just so that she need not do this all alone on her own.
  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 and going down (but insufficiently) each time she was treated with immunimodulatory treastment and her leucocyte level was elevated (over the top limit, but not dramatically enough to make any other MD interested) and reacted by going down with each treatment. Last Januyary IgG was ca 200 (normal is 35) and she was totally bed-ridden with both "grand" OCD and chorea-athetosis symptoms. We see clear and undoubted improvement. Sandra's IgG kept going down the longer she was taking the Azith, and 6 monhts after starting the on-going Azith it was 39! Her symptoms too keep on getting better. True, this is a millimeter at the time kind of process, sometimes regressing real scarily but the total sum is always that of going forward. She is now out of bed, this October she started going the later part of the day unaided (it takes her some hours to start going, but she DOES). Her fogginess (ability to focus) is highly improved (the best indication of which is the quality of her piano playing and ability to read), she even started watching some TV (could not watch any moving picture and blinking light)! As she never tested positive to Strep by any of the tests available here and we clkearly know when she had Mycoplasma Pneomonia and when PITAND started and what treatment it reacted to, our humble conclusion is that Mycop.P IgG is highly significant, indicates the existance of the bacteria active somewhere in a body and PITAND symptoms point at its activity, and must be treated. I got IVIG way back in 2007. It was effective but did not last (see special reasons in my previous messages). Up to the beginning of 2010 we did not have any lengthy ABX, and once we started this long rise we are going through at the moment we asked for but were strictly denied any IVIG. I would like to add tht I am talking here about Finland and the public system (her special insurance refused in 2007 and expired when she turned 20). I strongly believe that there is no one other physician in Finland really interested in PITAND or PANDAS but for our GP Marjaana, who is out of the public system and wish she could but is not in the position to prescribe or perform IVIG. We want to believe that Sammy's story, which is our inspiration for treatment, as we know it is true and that Sandra too can achieve similar results to his. It is sad that we never did and will probably not be able to do a combination of long term Azish and IVIG, as it seems logical this might have been a possible way of expediating results, at least in Sandra's case.
  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 algorithm based thinking they are trained in. On the other hand, if MycoP is a stealthing germ, why not to assume that ever rising IgG values point at it hiding somewhere within the cells? The proof is in the result, and in our case it seems that doctors who are afraid of trying to think outside the box are mistaken. Sandra, who had Mycoplasma pneomonia back in 2005, which caused her PITAND never tested positive for IgM because she was tested only several months after the initial condition started. Her IgG was first 65 (35 is the limit value by our lab) and it kept rising throughout the 5 years, always going down after abx/prednison/IVIG treatments but not significantly, and then going up again and kept going higher, until in reached 200 last December. Following the Sammy model, our GP and I decided that what was good for Strep could very well be good for MycoP and started high daily dose long term abx (azith). In March 2010 her MycoP IgG was down to 135 and this June it was 39. All vocal symptoms are gone, 90% if not more of the movement disorder is gone and we are left "only" with the debilitating OCD and some movements I think are more OCD than chorea-athetosis. We keep her on high daily dose of milk acid germs and so far all seems to be going in the right way. Not sure how long this way may be, because this is a loooooooong process.
  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 symptoms through until January 2010 when we started long term ABX (Azith 500mg), still going on. No more sounds or choreatic athetotic movements and far better ability to concentrate but rather debilitating OCD, mainly because she is not able to walk unaided and can get "stuck", unable to go out and on when visiting the loo, cannot watch moving pictures ... but albeit backslides in the form of bouts of hair pulling (greatly helped by NAC) I would say that the bottom line is that she is slowly getting better and once she gets over the idea of not being able to walk without holding a yarn tied to me or to the sofa, we shall be million light years ahead. Since January her MycoP IgG, which kept rising ever since she contracted it way back in 2005 (but always reacted and went somewhat down following treatment) dropped from 200 (positive border at 35) down to 39 in June matching the other changes listed above. We also strongly believe (based on past experience) that the process would have greatly benefitted from additional IVIG, but were denied treatment. Finland seems to be way behind the US in this respect, as our GP is probably the only doctor actively treating a PITAND case. So to the best of our knowledge Mycoplasma Pneomoniae was most possibly the cause and the trigger. One has to note that the names PITAND and PANDAS are rather misleading because the phenomenon is not necessarily limited to P-ediatric patients (it is only so that Swedo and her team paid attention to them and not to other age groups) and there seem to be several culprits causing the condition, so far we know of Mycoplasma Pneomoniae, Strep and Borellia (Lyme). Some patients seem to have only one of them while others test positive to more than one. To the best of my knowledge, there is no such test taht can diagnose PITAND or PANDAS or whatever one may want to call this condition, but figuring an infection helps select more suitable treatment (Augmentin and the like work well for Strep but not at all for MycoP while Azith works well for both. To the best of my knowledge the best diagnostic method is the patient history, the sudden outburst and the reaction to antibacterial, anti-infection and imunomodulatory treatments. If the patient reacts well to TS related medication but not to ABX, steroids, and immunomod treatments, the line of treatment is different, if the reaction is negative to both TS and ABX, steroids, and immunomod treatments, there may be hope in mental health related medications and therapies. So far we call in PITAND and PANDAS but if studies were to concentrate on adult patients or start with Lyme patients the acronyms would have been different. PITAND is not the only condition the medical professionals do not know much about at this point. Laymen are made to think they do, but as the body of knowledge grows the view of the medical professional community on many conditions changes, even if some members of that community find it hard to adapt to these changes. I would also dare say that at this stage the field is still badly blured by limitations of research financing and planning and experience of treatment for any specialist to be able to absolutely say which case is which. We may wake up one day to the news that many more mental health and TS cases are in fact bacteria caused and triggered, or we may not. As for your child, I think you got the answers to go by and treat - you kow your son has Lyme and Mycoplasma pneomoniae - have the doctor treat those conditions (the only problem parents and patients normally have is finding a medical professional who believes in daring and sticking with the patient). Experience of treatments for these conditions exist, so make your active and willing doctor read the forum from beginning to end. (Of course, it would have been best if we could make all those treating our patients communicate and exchange information on their experience). Based on our recent 5.5 years of harsh experience my only advise is persevere! I think treatment is not miraculous or fast and even when it does take place, the condition seems to be capable of coming back. Yet, it may be coming back because we do not know what it takes to eradicate the actual cause (e.g. we have no idea how long to go on with ABX, but for a long as her reaction is of even the smallest improvement and side-effects mild, we shall go on). We ahve heard of some kids who got well - was it because they were treated at oyung age or aggressively, it is had to say. Get ready for a long fight, select a proactive medical professional to be at your side and be committed long term - and make sure you have lots of emotional support for possible hard times, if they ever come. After all the horrendous times we have gone through, Sandra, Marjaana (our persevering GP) and I have not lost hope, and I want to believe this perseverance will take us through to the happy end.
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