Pandasphilly

This post is mainly about treating resistant strep with now a lyme diagnosis. I'm sorry if I belong on the lyme board but the treatment resistant strep is my main concern. DS10 FINALLY came up positive for Lyme after testing 3-4 times over the past year. At the same time he is positive for strep with titers climbing from 400 to 800 over the year on treatment of high dose Augmentin XR1000 & intermittent Clindamycin & azithromycin (to which I saw no improvement but who knows). He has Lyme Reactive bands 23 & 41. What is the best antibiotic (or combo) to treat both resistant strep and lyme? Dr. L wants to change out Augmentin XR with Clindamycin but I saw no previous improvement. Any suggestions? Any success stories? Rifampin? other?

Absolutely. If our kids are receiving pex they are obviously a severe case and I believe as such there should be immune modulation added immediately post pex, to avoid B cell recreation based on memory. At Georgetown we did not do that and it appears the B cells are again recreating. I think immune modulation is THE key piece. Without it (For US anyway) the pex seemed to be only "half of a procedure".

I agree. Even Dr. L & another excellent neurologist have said to me that neurologists use ivig & plasmapheresis as their first choice of immune therapy, its what they know and were trained in. If we were seeing other doctors (rheumatologists) they would first be prescribing Cellcept, cyclosporine, rhituximab etc. That's if you can convince them that pandas is real. Even my dermatologist, when i told her my sons story, said very simply "why dont his doctors have him on Cellcept or steroid sparing agents?" Thats typically first approach. Thought it would really help. Also I have read and agree with removing some immune boosting supplements if you take this course as the goal is to supress the immune system, not activate it.

Good to know - thanks! Have you noticed anything? We have yet to add it to his regime. Let me know if you get any results and I'll do the same

My experience was similar to 1tiredmama. My ds10 received pex at Georgetown in November 2012. After receiving the ok for pex we heard absolutely nothing from the doctor or hospital (or anyone) for 3 months despite daily phone calls (yes almost 90 calls). My insurance carrier contacted them and received no response so denied us. We then opted to pay as I was beyond frustrated. My son also went undiagnosed for many years and was out of the critical exacerbation period but left with many symptoms. We have not seen much difference 2 months post pex but it can take a long time to work for some. I believe if we did pex during the worst of it that he would have found relief and a possibility of better recovery. With that said we have done a ton of CBT and the program at USF did much more for him than pex. He's doing much better for it.

LLM, Bh4 has become available online through NutriMedical. It comes in 60 capsules of 2.5mg. I ordered & received it. They did not mention it comes in US mail bag with refrigerated packs and I hadn't checked the mail. It happened to be a warm day so I'm not sure if it's compromised. Something to help others as it was a bit expensive. Dr. Neil Rawlins has it posted where to find it.

Yes I have heard of anatabloc. It was recommended from a friend of friend who uses it to control an autoimmune disorder (which one I don't know). Said it was unbelievably helpful in controlling her symptoms. Said it was available at pharmacy (not sure If this is accurate as it isn't at our local Cvs). I am going to try it. Also highly recommended by our endocrinologist & MTHFR doctor who also treats lyme is Reuma-art x-strength by Full life company. All natural herbal blend of horsetail, stinging nettle, garlic & celery. He said its been incredibly helpful to patients with inflammation and rheumatoid arthritis etc. one of his favorite products (among our 40 other supplements surprisingly he wasn't familiar with anatabloc

Olvay We just did pex with little change 2 months out. How long did it take to see improvement? Was it slow and gradual or immediate? Also what dose and which antibiotics and for how long after pex? This post and all these stories are so inspiring & beautiful!

Caffeine also elevates cortisol. I know for my ds10 when his cortisol peaks his ocd is at its worst

Nancy, Can you share what steps you took for recovery? We've done ivig, abx, pex, therapy but I love to hear others stories and in what time frame to expect improvement.

We just returned from 3 weeks there. We mainly treated severe ocd (and the anxiety it is causing) but as stated above they do treat anxiety. I liked the program and all the therapists are highly qualified. They took my Aetna insurance. Each visit was the cost of a specialty copay, which for me was $35. The value is in the intensity, the required homework and the fact that being away from home leaves less distraction and more time to focus on facing fears and doing related excercises to overcome them. I am considering returning with my non pandas child simply to address anxiety. They explained you do not need a specific diagnosis. They are able to do that there. However I know with my pandas child he already had diagnosis of ocd, anxiety, panic attacks, etc as do most. We were with Dr. Marni Jacobs but i also like Dr. Rahman and Dr. Jordan (only three I met). My son was resistant but they did not let up on him or make it easy which was good. He eventually came around. With that said I just kissed him goodnight and noticed contamination surfacing again so we need to keep up with our support doctor here at home and our exposure excercises daily. It was a tremendous help and I would return at any time if needed. Michelle

Ocd Therapy was so helpful for us. The thoughts are worst at bedtime. We found melatonin was making things worse

Beeskneesmommy, Can you share what dose augmentin & azith respectively? Are they administered together at both morning and evening? We are currently on augmentin xr1000 2x/day and it worked great for a while. I feel I need to add something more lately and like to hear what combos work

My son tested negative for mycoplasma through dr. Ts initial bloodwork. But then he suddenly tested positive 6 weeks post ivig. I'm not sure if he aquired it from ivig but our immunologist felt most results would be inaccurate for a number of months. Not sure this helps since it also leaves me puzzled.

Philamom, We work with Dr. Hedaya in Georgetown.

Like LLM we tried NAC for ds10 & got emotional bi polar reaction. A bit of anger/rage and also a lot of tics within 2 hours of taking it. Tried it again and same response in same time frame. Doctor said since he's compound heterozygos MTHFR with the CBS gene at play we should add this later in the mthfr treatment cycle and will get a better response after fixing other components of the cycle first.

Yes we are experiencing a steady weight gain. Started about 3 months after high dose antibiotic regime was started. Doesn't happen in most kids that ive heard but pretty severe in my ds10. We are adding digestive enzymes, nystatin, plus doing culturelle and florastor, plus a lot more gut supplements. Doctors believe it goes back to the theory of fattening up animals on a farm with antibiotics. Changes the gut biodome. My son cannot be without augmentin xr or all symptoms return. Even with one missed dose. We now have to eat carefully and excercise more.

Wow! I am so happy for you. And so happy to have hope! We just got into Tampa today. Can't start quick enough...

Thanks for the replies. Our largest ocd symptom is that my son believes my husband is contaminated so it makes daily life so brutal. I'm hoping that's one they have experience with at usf

Yes I'm seeing a pattern as well. Especially right after meals. I've been wondering about his a long time. Trying to figure if it's anribiotic timing related? Food related? Need to make some adjustments to tell

We are starting the USF Rothman program this Monday (with Dr. Rahman). I'm wondering from those of you who attended exactly how much work this is for the child? I am willing to take on any amount but ds10 hates doing exposures outside of time spent with therapist. What is expected of the child time wise and work wise? Does therapist guide them through their avoidance if they're not doing the homework? Did you find you received enough erp education to assist child upon return home if they start to slip? That's one of my main interests here. Also how often did you continue therapy at home to support the gain in progress?

What was the first low level doseage amount and how long did you try it?

I've been told its often ordered by neurology and immunology. I believe also possibly rheumatology.

I tried florastot simply because I give it to my son. I have to say it made my stomach really hurt. When I met with a new doctor the first thing he said was he was surprised we were on florastor as its rough on the stomach and most patients complain. He prefers culturelle (however its a pain to administer timing wise).