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mpsloan

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Everything posted by mpsloan

  1. Dr. Azam Baig he has offices one in Edgewater, Maryland (Annapolis area). He is PANDAS /PANS friendly. He treats my two sons for PANDAS, as well as many other patients with PANDAS/PANS.
  2. Thanks for all the replies. LLMD just added second abx to the mix. He has me on doxy 100mg 4 per day and has just added CEFTIN 500mg 2x day taking coq10 4per day 10,000 ui of d3 b12 sublinguil 1per day and megadose multi 4 per day probiotics and has just added diflucan says my complaint of bloating likely due to yeast....... and trazodone at night....... On a good note PANDAS/PANS ds7 has been doing very well, llmd just upped his abx , he is on amox and zithro- today a few ocd "quirks" started to creep back in, not sure if increase in abx could be cause a slight herx with is
  3. I just got ds7 test back from IGENEX. Not sure what they mean.... IGG only bands showing anything are 31 IND 39 IND 41 +++ IGM Bands 31 IND 41 IND 83-93 IND LLMD has been treating him with Amox and zithro for last month and 1/2. Ocd symptoms have inproved since being on abx.
  4. Thanks for checking back in with me. My llmd said that he does not pay any attention to the % on the cd57. Just the other number. He said he would like to see it at least at 200. I keep waiting for the really "bad" herx response, I am really feeling crappy, dizzy, low grade fever, weight gain, sore, tired. but I don't think that is herx yet....we go back to see dr. on Tuesday. Now my ds7 seems to be doing pretty well on meds- he is on amox, and zith and probiotics- I felt that after almost 2 months of him being on antibiotics his ocd is MUCH better...however, today a few worries crept back
  5. Hi, We see Dr. L. and she is great. After seeing her and getting diagnosis of P.A.N.D.A.S. Dr. L. strongly suggested IVIG treatment, Before we do that, I wanted to rule out co-infections other than strep- based on things I read on this forum. We took son 7 lyme dr. here in MD and he diagnosed him with Lyme, this seems to be my son's "trigger" for his symptoms of OCD. You are in good hands with Dr. L. She will take a very detailed history, it is helpful if you write it down. My son would also show symtoms when others were sick or whenever there was strep around at all. We may still do I
  6. **Hi- well, it certainly could be... it will be interesting to see how our CD57 test comes back, as well as the other testing on yourself. Have you started taking Doxy again yet? Your response to it may also be telling. It's a big ball of wax- there may also be some co-infections that went along with the original Lyme you had- but how wonderful you were able to treat so quickly after that bite- by doing that, you very well may have tamped down the infection, and did not get continue to get sick-able to function through life. Another thought is perhaps the recent stress of your PANS chil
  7. I just got my bloodwork back. Please give me your thoughts. HNK1 (cd57) Panel %CD8-/cd57+ Lymphs 3.4% refernce interval is 2.0-17.0 Abs cd8-cd57+Lymphs 61 Reference interval 60-360 RDW 15.9 flagged high range 12.3-15.4 Glucose, Serum 102 High 65-99 Bun/cratinine Ratio 25 High 9-23 Vitamin D, 25-Hydroxy 16.7 low range 30.0-100 I am confused by the first number on cd57 the %, that is in the normal range, however the cd57 abs is only 61- even though that is in the reference range would that still be considered- chonic lyme? LLMD has not reviewed results with m
  8. I was treated 4 years ago after a tick bite that had small rash, reg dr. did upon my insistance put me on Doxy even though bloodwork came back negitive. I took abx I think for 30 days.....anyway now 4 years later I have very sore muscles, acheness, weakness in my arms, shins hurt, and extreme fatigue. I also have "pins and needles" feeling or creepy crawley feeling skin. At night seems worse with alot of leg twitching. I saw LLMD yesterday and he feels I definatly have lyme. He ran cd57 and several other blood tests. He has started me on Doxy, Vit d3, womans supplement, CQ10 and is taking me
  9. Just wondering if you were accepted into the NIMH program? I also just realized that you asked me about the zoloft dose. We have stayed at the 12.5 for almost 6 months I guess, when we have tried to increase it he was worse. New Ped. wanted us to try Ativan . I tried the ativan and it REALLY activated him. I put him back on the 12.5 of Zoloft and he was better. He has only been on ABX about 3 weeks now, as well as high vit. d3 (5000ui), he is more symtomatic but I read that can be a "herx" effect from the lyme ? Too early to tell.
  10. Thanks for the replies. We go back to see the llmd on the 8th. I have noticed last few days that he is very active. He is starting to feel like he "needs to touch the over", confess, saying "sorry" 100 times a day.....so after 2 1/2 weeks on the antibiotic and VIT d supplements , symptoms are creeping back up, this is after seeing a bit of an decrease in symptoms. I have read that this can be "Herx" affect? He actually looks healthier, brighter eyes, skin tone does not have that "grey" sickly look. He has made it to school the last week without tears and meltdowns! Still too early to tell.
  11. Thanks, my DS is 60 pounds. His level was 18 We go back to see the llmd on the 7th so I will talk to him about it. I thought that 5000 was very high dose to put him on, but what I have read and spoke to the store about said that was o.k. He "looks" healthier, and ocd symptoms seem less on abx and d, however still too early to tell. He had more bloodwork today. Thanks for the input
  12. I am new to this forum, but not new to PANDAS! I have a son 16 whom I am sure is/was PANDAS, back then they (dr's) basically told me it was OCD, however, WHENEVER strep was around- even if he did not have it- his behavior was off the charts, worries,fear, adhd. Unfortunatly, he struggled endless years and has been on Zoloft and adhd meds for 10 years. No one ever suggested antibiotics! He has seemed to "outgrown" most of his ocd issues- or perhaps just learned to manage them- but I don't believe that is the case for most. I trusted the dr.'s, we managed his "issues" with an IEP and years of sc
  13. I am confused about low vitamin d and lyme. DS7 just dx PANDAS in Jan. DX from cd57 lyme also very low Vit d levels. Awaiting more bloodwork, on amoxicillin, probiotic, small amount of zoloft 12.5 and llmd wants him on 5000ui of d3. some sites I read that you should not give vit. d because it "feeds" the lyme? Is it common for people with lyme to have low d and is it usually accepted practice to take d supplements or is there "truth" in the d "feeds the lyme?"
  14. He feels cd57 and low vit. d level plus the pandas symtoms point to lyme. I asked after reading on this forum about are we 100% sure and he said 95%, he believes in the cd57 test, I have seen alot about how it is very controversial. I asked if there were any more specific blood tests we could run and he said yes- they would draw in his office and send to special lab, I believe igenex or something like that,He said unfortunatly that would be out of pocket. He felt that the amox. would help with the pandas as well. I think we will have them run more bloodwork and send to special lab. I am und
  15. Just got bloodwork back from lab corm and spoke with LLMD. He feels pretty confident that son has lyme. CD8-/CD57+LYMPHS WAS 1.1 Norm is 2.0-17.0 ABS.CD8-CD57+Lymphs was 32 norm is 60-360 His vitamin d 25 hydroxy was also very low 18.9 norm 30-100 Started on Amox. 200 1 in am , 2 in pm. (chewable, yuck) probiotic pearls he also wants me to give him 5000 vit D3, that seems like a high dose for a 6 year old? Any thoughts anyone? Liver and spleen seemed ok based on sonogram, pediatricion felt like they had gone back to almost normal- he had been on zithromax 4 days when sono was done so
  16. Thanks. It is soooo confusing!, Who do you trust? I am going to try to get back in with LLMD and discuss tests, usually he has patient wait to discuss tests at next appt (a month away). unless he feels that his recomended treatment should change. He put my son on amoxicillian prior to tests coming back, based on symtoms of pandas and dr. l report.
  17. DS6 saw llmd last week. I have blood results but have not reviewed them with llmd yet. I did go over them with new pediatricion today- however- he said check with llmd. CD8-/cd57+Lymphs was low at 1.1 normal limits 2.0-17.0 Abs, CD8-CD57 Lymphs was low at 32 normal limits 60-360 Does this mean son definatly has lyme? BUN was a little high 22 (5-18 norm) Bun/creatinine Ratio 43 (9-27) Vitamin D, 25-hydroxy was low at 18.9 (30.-100) Vitamin B12 LOOKED OK 917 (Limits are 211-946) Ped. ordered, abdominal sono, ct of sinus and chest xray the other day they came back normal.
  18. DS6 recently diagnosed PANDAS trying to fit all the peices together. He has had alot of bloodwork done, we just met with LLMD last week and here is what tests he ran showed. Can anyone tell me what they mean? DS6 saw llmd last week. I have blood results but have not reviewed them with llmd yet. I did go over them with new pediatricion today- however- he said check with llmd. CD8-/cd57+Lymphs was low at 1.1 normal limits 2.0-17.0 Abs, CD8-CD57 Lymphs was low at 32 normal limits 60-360 Does this mean son definatly has lyme? BUN was a little high 22 (5-18 norm) Bun/creatinin
  19. DS6 saw llmd last week. I have blood results but have not reviewed them with llmd yet. I did go over them with new pediatricion today- however- he said check with llmd. CD8-/cd57+Lymphs was low at 1.1 normal limits 2.0-17.0 Abs, CD8-CD57 Lymphs was low at 32 normal limits 60-360 Does this mean son definatly has lyme? BUN was a little high 22 (5-18 norm) Bun/creatinine Ratio 43 (9-27) Vitamin D, 25-hydroxy was low at 18.9 (30.-100) Vitamin B12 LOOKED OK 917 (Limits are 211-946) Ped. ordered, abdominal sono, ct of sinus and chest xray the other day they came back no
  20. We were just told it would be $100.oo per pound basically with Dr. L. office plus about $900 office fee for two days of treatment. I too have bcbs insur. I have not started that process yet as we are awaiting other tests to rule out lyme and other co-infections. That amount is per each IVIG treatment, I don't know how many he will need. New at this forum, but have found it very, very helpful.
  21. I finally feel like I have some doctors who hear me! Went to lyme dr. ran all kinds of blookwork, put ds7 on probiotics abx, Dr. L put him on Zithromax, and new pediatrition said "there is strep SOMEWHERE in his body" Son had T&A out in 2010 (prior to pandas). Step tests usually come back negitive- but I know his behavior is worse when kids around him have strep or other illness. DR. ordered a sinus ct (he thinks it's there), also said that his liver and spleen where enlarged?!, so getting sonogram as well tomorrow. dr. said strep can definatly be in other areas. This ped, felt tha
  22. I finally feel like I have some doctors who hear me! Went to lyme dr. ran all kinds of blookwork, put ds7 on probiotics, Dr. L put him on Zithromax, and new pediatrition said "there is strep SOMEWHERE in his body" Son had T&A out in 2010 (prior to pandas). Step tests usually come back negitive- but I know his behavior is worse when kids around him have strep or other illness. He ordered a sinus ct (he thinks it's there), also said that his liver and spleen where enlarged?!, so getting sonogram as well tomorrow. But to answer your question, strep can definatly be in other areas. This p
  23. I just had interview with NIH few weeks ago, Dr. L, thought he would be a good candidate but we were not approved for the study based on onset of syptoms was prior to 6 months ago. The main reason I wanted to get son in study was because of all the tests he would have done and the care he would recieve, not to mention all would be at no charge. Dr. L. wants ds6 to have IVIG, starting the battle now with insurance company. In the mean time, I just took son to Dr. Beals he is a LLMD in MD, I liked him . I want to make sure we don't have any underlying conditions. Dr. L put son on 6 days of
  24. I greatly appriciate all the responses! I just got an appt. with a LLMD dr. local to me. He felt good to look at levels, use igiv as last result, or at least try other things first. We have an appointment with him next week and HE personally called me to have a "meet and greet" over the phone to discuss what is going on prior to us visiting. He will order extensive blood work. I have been at this today since 9 am, still in my jammies- switched from coffee to wine a few hours ago...
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