mpsloan

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.

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 perhaps the begining of a flare up? After 2months on abx about 65-75% of ocd symptoms have greatly improved....

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.

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 in. He had igenex test done that will be back this week. Dr. llmd based his dx of lyme based on his low cd57 and PANDAS/PANS symtoms. With his improvement on abx. we will most likely hold off on IVIG for a bit

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 IVIG treatment with DR. L, however my son is responding to antibiotics so we, Lyme Dr. and Dr. L. agreed to see how he does for a few months and then revisit IVIG. God bless you and your family as you figure all this out, it is truly a puzzle and as different as all our kids are, they seem to have a common thread on many things. This site has been a big help to me over the last 3 months (dx Jan).

**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 child's diagnosis weakened your immune system and allowed Lyme to re-surface. Either way, wishing you the best, sounds like you are in good hands- 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 me yet, however, he said he treats symtoms to the results. He felt that my symptoms all pointed to lyme. and has started me on DOXY(4 days on it now) probiotics, vit d 5000ui, cq10 I started Doxy and probiotics and feel like a truck hit me. very fatigued alot more brain fog......doxy seems tough on my stomache, and I don't know what I am supposed to eat or not eat.....

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 me yet, however, he said he treats symtoms to the results. He felt that my symptoms all pointed to lyme. and has started me on DOXY(4 days on it now) probiotics, vit d 5000ui, cq10 We are also in process of treating PANS ds7 for lyme as well. Through all the reading on him I realized that I had many symptoms listed on websites and saw llmd for myself as well. Please share your thoughts with me. I find this site so helpful in understanding things and value what your experience brings Thanks

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 off zoloft and putting me on trazadone as well as probiotics. I have been working hard getting my ds7 treated for P.A.N.D.A.S and in the process found this LLMD who is treating son for lyme as well, as I was doing research for him I realized that I had alot of the lyme symptoms as well. After 4 years of feeling o.k, is it really possible that lyme could show back up? Would this be considered "chronic Lyme", I am just learning about all of this and it seems a bit overwhelming. Any thoughts or suggestions welcome.

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.

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.

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

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 school modifications- He is now in 11th grade and has a 3.75 GPA, I think of all the years he struggled and wish I knew then what I know now. Now I know better, I have a 6 year old who has just been dx. with PANDAS and it apprears he also has lyme desiese blood work also came back that he was extremly deficient in Vitamin D. More and more I believe that any auto immune issue esaserbates the ocd symtoms. This forum has been a Godsend and I will now not take no for an answer from DR.'s. My strong suggestion is to get a new pediatrition immediatly! This was hard for me because I had put all my faith and trust into our family ped. for the last 10 years. I think we are programed to believe that they know best......THAT is not the case. You need to trust your instincs and find a PANDAS literate dr. I am not sure what area you live in but you can check on the PANDAS.ORG website and it will give you a list of Dr.'s. We changed our ped. we searched out a Lyme literate dr and my son is already showing some progress on antibiotics. Still to early to tell and we are still doing more blood tests, but I think he is better....at least I feel like there is hope now that we are on the road to recovery! I would never of suspected lyme until I did some research on this forum and all the folks were suggesting to check for co-infections. We are new in our journey with my 6 year old, however I am now of the strong belief that the lyme is also a trigger to the ocd and also my son showed he had walking mycoplasmic pneumonia in the past as well. Good luck, God bless you and keep pushing until you get a doctor to listen to you!

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?"

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 under the impression that the pandas is caused/or exaserbated by the lyme....or at least thats what I think I am hoping for because at least then I feel like we can "treat" it. I went to him to rule out underlying infections prior to possibly trying IVIG as suggested by dr.L, and as I read many posts on forum about making sure there were not underlying co-infections. My son almost 7, has been to ped. 80 times since born for cold, viral infections, respirtory, sinus, pneu,...blood test showed he did have mono at some point. So.....much to take in. He usually tests negitive for strep, however, I can tell by his behavior- also when he is around anyone who has strep or other illness he is worse. Anxiety, worries primarily school fears, now is hoarding trash in room, says "Im sorry 100 times a day, hand washing. Just trying to put all the peices together. Any advise welcome. Spleen and liver were enlarged prior to him starting on abx., dr. felt that it was because chest was congested and lungs full perhaps pushing down on organs, when we went back to see PED. 5 days later he had been on zithromax so perhaps that helped bring down the inflamation.

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 perhaps that helped organs reduce....