tpotter

No...and we did try.

Watch...Drs. will STILL extoll the virtues of these guys!

The stretch marks fading dramatically is exactly what made us realize that we were actually dealing with stretch marks, too...even though DS tested negative. Keep in mind that bartonella hides very easily in the body, and also hides other lyme and co-infections. So, until you start breaking through those cysts, and the little buggers come out, it's really hard to get a true positive blood test. And, yes, it could be a herx, or your son could have been having a side effect. I think you did the right thing to pull him off. There are other drugs that can be used. A lot of people are allergic to sulfa (including me.) Good luck. Sounds like you've finally stumbled onto some answers.

Just got the results back for Advanced Lab (the new Lyme test that takes pictures). His was negative. I know that there's still a 20% chance it's wrong, but I think it may be right. Although, that being said, I do believe he had it, and we managed to treat it. Now, I just keep reminding him that his health and well being are mostly within his own power...such as not drinking monsters and mountain dew in excess (couldn't get him to completely eliminate), particularly after he goes away to college next week! I'm very excited that it's negative.

I suspect that your FIL and maybe your sister might be helped by ruling out infectious triggers (such as Lyme, Strep, Staph, viruses, etc.) Also, both my children have PANS (turns out that there are lots of infectious triggers that they have...we first noticed with strep with my youngest, and my oldest has Asperger's, but many of his Asperger's symptoms improved tremendously with abx and then PEX/IVIG. My oldest was not dx until 15, but he probably had it since he was a baby (and maybe from birth.) Also, both present vastly different.

Sounds good. Does this work better than taking oral magnesium?

Since your doc is so supportive, would he consider ordering the IVIG himself, so you don't have to wait a long time for an appointment, and who knows what the response will be, anyway (if with Dr. B., you might get answer such as immune deficiency, that would help you get insurance approval.) Your doc can order it through a homecare agency that specializes in IV therapies (there are plenty of good ones around.) If he still insists you see a doc about this, I would highly suggest Dr. B., because he will look for immunological reasons your child is having problems, and he also looks at the possibility of other infections that may be causing your child not to get 100%. The other docs you mentioned are neurologists/psychiatriasts, and they don't have the immunological piece (although most of the ones you have mentioned are excellent.) As you probably are aware, both my DS's have had PEX and IVIG, and I am very grateful I did it (but we were also dealing with severe PANDAS.) Personally, if my DS was not severe, I would look closely at that the possiblity of other infections first, such as viruses, mycoP, lyme, bartonella, babesia, etc. The blood tests are quite inaccurate for the lyme and co-infections, but if your child is still off abx, there is actually a new one from Advanced Labs that takes a picture of the spirochets, and is about 80% accurate. Personally, we did not expect to find Lyme and co-infections, and the tests we did were all "negative" (per the CDC), but turns out everyone in my family has it (DH was the only one CDC positive.) This certainly has made a difference since we started treating. These are just my personal opinions on the whole thing. For the record, I am glad we did the PEX and IVIG, because my boys were very severe, and needed it, but they won't get completely better unless we also continue to address the additional infections.

Sent you a PM.

Very interesting alternative medicine practice in northern MD http://www.twofrogscenter.com/index.html Greg Lee would be the guy to see. He contributes a lot to this good news letter http://goodbyelyme.com/ Lots to learn on both websites. An excellent LLMD and PANDAS doc in Conn. He treats PANDAS, Lyme etc. and immune deficiency. Denis A. Bouboulis, M.D Dr. B. is not an LLMD (he is a PANDAS doc, though). He refers to Dr. J, and they collaborate together. http://www.advanced-allergy.com/

My son's stretch marks have faded dramatically. That's how we actually knew that we were dealing with Bartonella. We were quite convinced that lyme and co-infections were NOT the problem, as he only seemed to be getting worse (enlarged spleen, elevated liver enzymes,) and we assumed that was from all the abx. Then, he got so bad that he started on IV abx (cleocin for him), and suddenly the magic happened...the stretch marks started fading dramatically. It has now been 2 years, and they are mostly gone, but we know that there's still some to go (plus the bart is still hiding the babesia, as well.) It does take time, and is very difficult to treat.

We live near Philly...about 4 1/2 hours away. He already sees one here, but can't be having to come home from school to get tx when needed.

Does anyone know one around that area? DS19 is going away to school at PSU, and we need someone to coordinate his care there. PM me with names, please. Thanks.

Does anyone know one around that area? DS19 is going away to school at PSU, and we need someone to coordinate his care there. PM me with names, please. Thanks.

Does anyone know one around that area? DS19 is going away to school at PSU, and we need someone to coordinate his care there. PM me with names, please. Thanks.

If they'll pay for PEX, is there any way you can get that? It's not a blood product, actually worked better on the NIMH study, and tends to work quicker. We have done both (only go the PEX once, but would have done it more if we could have gotten it.) Don't get me wrong, the IVIG helped, too, but I would definitely choose PEX over IVIG for my children if given the chance.

There is such a thing as being allergic to water. I just saw a news article on it. Maybe it's an allergy, and/or a sensory thing. Either way, my guess is that it does truly hurt. You may want to try doing sponge baths for awhile, and at the least, take away the stress associated with the whole thing.

There's actually a lot of us with older children who were caught years after they originally got sick (I have 2.) Yes, it takes longer, there's nothing overnight about it, but finding as many of the infections as possible, and also treating the autoimmune response seems to be the most that has helped my children. Because the immune system is involved, it's rarely just one infection. You may also want to check for strep, staph, lyme (and co-infections, such as babesia, bartonella, RSF, erlichiosis, etc, even if you don't live in the "traditional" high tick areas, because lyme and co-infections are everywhere...can be spread by mosquitos.) Also check for viruses. In fact, the new NIMH website (or the paper that came out just before that...can't remember which,) mentions all of the above as possible culprits to PANS. But, yes, it is possible for older kids and adults to be helped by treatment.

This is DS19's sophomore year of college, and what we found is that you can do a lot ahead of time at the college of your choosing. Each college has a disabilities department, and I met (with my DS, because he's no longer a minor), with the Disabilities counselor. I would first decide what your child wants in a school...big, small, etc, and then talk to the disabilities department, and see what you think about what they can offer your child. We were able to arrange for special housing, for instance, (single room + single bathroom, because of his immune deficiency, and also because of his asperger's), plus he gets some modifications on coursework (which he hasn't used yet.) We also chose a school that had a local campus, so first year was living at home, and commuting. Now he will be going away (with the single room), and I have to admit that my fingers are crossed, and I'm holding my breath! the other thing to decide is if your child already knows what he/she wants to major in, the department itself may make a large school small (i.e. the engineering department within a very large university...most courses are taken through engineering.) I am also still trying to get hold of the student health department, but just remember (thank you for prompting me) to call back again. That's one area that I'm actually kind of concerned about, because I left a message last week, and I was told the director would call me back, and as of now, she hasn't. I'll have to call again (my DS was on the phone with me last week asking, since he's still not a minor.)

I would also check out Costco for meds. My dog takes zonisimide (for seizures), and in the regular pharamacies, it's over $100, but at Costco, it's only about $11. The non-member price is only slightly higher!

I can't imagine it not being there, or anywhere for that matter, as I would think it is also carried by mosquitos (as they bite the deer), and they don't differentiate as to where they go.

Also, G-town may be able to set up a payment plan with you. Some families have found that after paying out of pocket for IVIG or PEX, the insurance company ended up reimbursing them. See if Gtown will set up a payment plan with you, and then keep fighting insurance. It's not too late. DS (now 19) wasn't diagnosed until 15, and didn't get PEX until 16, then started getting IVIG at 17, and made massive improvments. We are also treating with supplements, and was treating for lyme, but c-diff has made it difficult to continue the traditional method. But, it's not too late. Good luck

What's being done to treat for mycoP? I have it, and it has now been 2 years...it's very hard to get rid of. another thing to consider, is: 1) MycoP can be a co-infection of lyme 2) Tachycardia is a symptom of lyme (not always caused by it, but is a symptom, no less). DS had that several months ago. It's awful. Doctors also said it was caused by some kind of infection 3) Air hunger...I believe that is also a symptom of lyme and/or other co-infections, and I actually got that as a herx reaction about 1 month after starting azith for mycoP. 4) Pain in leg/arms/tingling...also can be symptom of bartonella and other lyme co-infections (I've had that, as well.) If it was my child, I would be making an appointment with an LLMD, and determine if lyme/co-infections are involved (I would suggest an LLMD, as opposed to any other doc for this, because blood tests alone are a very inaccurate way to dx, and it is a clinical dx.)

If you think IVIG may help your child, then I would suggest seeing someone like Dr. B, who will do all kinds of immunological testing. It is possible that your DS may have an immune deficiency. On the other hand, I want you to keep in mind that IVIG does not cure the child. It helped my children immensely (took the edge off, and I believe my children are way, way better as a result, but despite multiple IVIG treatments, they are not cured, and still have flares.) But, that being said, we are still treating for lyme, co-infections, viruses, etc, and I now am convinced there may not be a total cure. We still get flareups when my kids are exposed (DS ended up at the ER 2 weeks ago because of probable strep, and that was a joke...I ended up taking matters into my own hands!) OK, that being said, I know it may sound like I'm vacillating, but I want you to be aware, that before you try IVIG, that you understand it's not a cure. Yes, it helped my children, and no I am not the least bit sorry I went that route (and they also both had PEX at their worst), but I also now understand that I don't think that more IVIG or PEX (at this point for them) is going to make a difference, and that the best attack is to continue with abx, supplements, chiropractics, acupuncture, and other alternative therapies. But, again, I won't try to dissuade you from IVIG, because only you know what may be best for your child. And for that, I would suggest you consider making an appointment with Dr. B, as he can look at the total immunological picture on this one.

There is a new test out that actually takes pictures of the spirochetes, and has an 80% accuracy rate. We are still waiting for the results for DS, and I know several others have done it, too. We only did it on DS, because DH came back CDC positive on the western blot, DH16 has the bartonella rash, and it's clearing with the proper abx (so we have clinical proof), I have mycoP, foot pain (again clinical signs,) and although DS19 also has many symptoms, he is prone to c-diff, so abx is a huge problem (I don't want to tx unless we are more sure, and then I would suspect we will have to go with IV.) Here is there website: http://www.advanced-lab.com/ But, keep in mind, that, although 80% is better than the 40-50% of other tests, it's still not 100%, and Lyme is still a clinical dx. One thing I would consider, is do you have symptoms, such as bright reddish/purple stretch marks (might look like cat scratches), foot pain, joint pain, all over muscle pain, rages, mycoPlasma pneumonia? These may actually be caused by lyme or co-infections, and these are some of the symptoms that LLMD's look for to dx clinically for lyme or co-infections.

Check pandasnetwork.org They've got most everything. If you still can't find it, PM Vicke (on this forum,) and she might be able to help you find it.