Anybody tried an immune suppressant?

[tpotter]

Peglem, I would suggest you post these questions on the lyme forum, because there is so much more that has been tried and tested there. You mentioned cysts and mycoP, and the first thing that comes to my mind, again is lyme and co-infections, because lyme hides in cyst form (that's why one of the treatments is a cyst buster...usually tindamax or flaggyl along with the antibiotic.) Additionally, other things that have been discussed at length include parasites (current threat, and one that I am also trying to make decisions about, because I am positive I have it...just because of the intense itching, and I highly suspect my kids have it.) Then there's all the discussion in the past about MTHFR mutations that make it hard for the body to process all the good stuff we put in (I would PM LLM, because she's got a great understanding of that one), and then there's been talk about detox, detox, detox. There's a lot more over the past 2 years or so that it's been around, and I have to say that I thank God every day that the lyme forum was created, because it was when I finally realized that my childrens' PANDAS was so much more than strep that we started seeing incredible improvement.

 

Now, this is not to say that my kids are cured. No way. My now 20 year old, who is a college student, takes care of himself like a college student, and that means that he eats horribly, and I just found out that he hadn't taken his meds and supplements in over 1 month. DS17 told me within a few hours that DS20 was sick, because "he could feel it." 4 days later, DS 20 announced that he was having a horrible OCD, and that's when I found out that he wasn't taking his meds all that time. Now DS17 is sick, too (DS20 went to the DAN doc yesterday and got a shot of abx, and DS17 is back on once a week of bicillin injection (he had just decreased, because he was doing GREAT, until DS20 came home.

 

So, you see, it's not perfect, but is really tolerable.

 

So, that also makes me think of several other possibilities to check.

1) Are you sure you completely got rid of the mycoP. It's super hard to get rid of, and I'm still having residual problems from my infection. My IgM is still elevated, and DS's IgG still goes up and down.

 

2) Is someone else in you house ill? Have you thoroughly tested everyone? I was the one carrying around the MycoP, and still may be.

 

3) Is there mold? I didn't think there was in my house, just like I didn't think there was lyme, but turns out there was hidden mold under my kitchen floor (we always thought things smelled musty.) Mold is another issue that has been discussed a lot on the lyme forum. When mold was accidentally released, we really flared.

 

4) Unfortunately, none of this is easy or cheap, although there have been some very good, useful suggestions. We found that we absolutely have to use supplements, because, as I am now trying to explain to my DS20...that's what was keeping him stable, and helping his immune system fight.

 

But, I would definitely suggest you look over the lyme forum in addition to the PANDAS forum (they both are good, and have useful info.)

[Kathy4Him]

Our Dr. is a rheumatologist. He spent weeks researching Pandas/Pans and told me that he believes the reason most Drs. do not use immunosuppressants is that they are not really used to treating autoimmune illnesses. Because Pandas/PANS is considered autoimmune he chose to treat it as he would other autoimmune illnesses which is his specialty. He spoke with 2 other Drs. a neurologist and internist who instructs new interns and they all agreed this was the best treatment. One thing I have noted is that no two cases seem to be alike although there are similarities and treatments vary although there is consensus on IVIG.

 

If the immune system is mistakenly attacking the brain then to suppress it seems like a good idea. All I know is we are in our 5th week of treatment with Cellcept, Prednisone and zithromax and we are seeing some positive movement. Definetely no negatives.

 

Prior to starting treatment he put our son thru so many tests and sent us to specialits to make sure he was not overlooking anything.

The Drs told us it would be a slow process but we are hopeful it will work. DS is 23 and has been suffering with this for 4 1/2yrs.

Allergic to augmentin, penicillin, and keflex.

[peglem]

Okay, she just had her 6th dose yesterday. It is helping. Here's how I know:

 

Things were humming along okay until a few weeks ago. The immunologist called to tell me that the insurance has a new policy of requiring prior auth for IVIG, and if it wasn't authorized in time, she wouldn't be able to do her upcoming, regularly scheduled IVIG (every 3 weeks). It wasn't, so we had to cancel.

As usual, she started a small flare a couple of days before she was supposed to get IVIG. It was worse a few days later when she was due for her methotrexate-not the worst, but definitely heading towards the bad side of things. But, after her methotrexate, she seemed a bit better the next day and for the next 2 or 3 days, things were fine. Then, Wednesday of this week- all ###### broke loose: full flare. I got on the phone with the insurance liason and had that prior auth by the afternoon. The infusion center can't get her in until Tuesday, though. So we've been stuck in full on flare since then. EXCEPT, Saturday she had her methotrexate and today is very remarkably improved! Praise the Lord!

In a way, I guess it was a blessing to have the IVIG delayed because it demonstrated how quickly she decompensates w/o it and gave us a good chance to see the effects of methotrexate when she's in crisis.

 

As far as the mycoP goes- the positive test was in October, but did not start biaxin until late November when we saw the doc that ordered the tests. She's a pediatric neuro who treats PANDAS, so you can imagine she is booked solid several months out. Anyway, We'll get the labs to check treatment progress on Tuesday, before the IVIG, and we see the neuro again on the 14th. BUT, I asked MIL (who lives with us) to ask her doctor to check her titers for mycoP-she thinks I'm nuts and refuses to do it. Until, her and hub came down w/ this coughing ICK disease in December and have had trouble clearing it. Hub told his doc about his daughter being positive for mycoP so he treated for that, and when hub didn't get better w/ 10 days of biaxin, he did the blood work and said he definitely has mycoplasma pneumonia and has extended his abx. So MIL, just had her doc culture her sputum because she doesn't want to do the blood test. I doubt they'll find anything because mycoP is notoriously difficult to culture. Her doc only put her on amoxicillan- 2 courses so far. Guess he doesn't really understand ANYTHING! I may very well be a mycoP carrier, but I don't have health insurance right now and cannot afford to be tested or treated.

 

I have wondered about lyme for Allie. I don't have $$ for testing beyond CDC and sure don't have $$ for a lyme specialist. Maybe we'll look at that when Allie's SS goes through. She does have stretch marks on her buttocks and breasts, though she's never had a significant weight gain and is not at all overweight.

[SurfMom]

We are about to add CellCept to my daughter's course of treatment. She has rheumatic symptoms, OCD, cognitive issues and is nonverbal. Her ASO titers are climbing even on abx. She has had 4 IVIGs and is now on a very slow prednisone taper, currently at 30mg.

 

I would appreciate hearing from you all about whether or not you have seen improvements, side effect, etc.

 

Thanks!