tpotter

Did you see the post about vagus nerve involvement that was just posted? It specifically mentions heart palpatations, and implicates Lyme.

His answering service will page him. He will call you back. BUT...if you think it's a serious reaction, you might need to head to the ER. Alternatively, if you don't think it's THAT serious...just really awful, try some benedryl? Other option...could he be herxing?

WOW. This is very timely and interesting information. My husband has had 2 episodes of vagal nerve fainting...one a few years ago, that I had to call 911 (thought he had a heart attack or stroke,) and the other was after a heart catheterization a little over a week ago that caused him to stay an extra day in the hospital, have an extra test in the hospital instead of doing it outpatient, since he was there, anyway, and then get admitted for emergency heart surgery (yeah...he had open heart surgery this week, and it's been pretty stressful...that's putting it mildly.) Anyway, he is diagnosed with Lyme (he's the only one in our family who actually tested 100% positive on the Quest WB, even though we are all being treated for it,) and when you add that to the list of symptoms (RA, that isn't responding to RA meds, a damaged mitral valve that caused the emergency surgery...I suspect maybe he also had undiagnosed ARF years ago,) this is all fitting together. Interestingly, his nurse the other night mentioned that untreated LD can cause severe heart disease..symptoms mimic a blocked artery, but the arteries are all clear...never-the-less, heart failure. I'm bringing this in to his heart surgeon and heart doctor tomorrow. He's really struggling with his blood pressure right now, and keeps having atrial fibrillation. I wonder if all that is related, too. Dr. B. (LLMD from MD) told him to stop taking all his meds and supplements prior to surgery, so he's not even being treated for it now.

My DS is also diagnosed with PANDAS, and has shocks all over his body, including his heart that have thrown him to the ground. He has also passed out several times (felt light headed, and then passed out.) Got better after IVIG/PEX, but reoccured with new flareup. I never knew night sweats could be a symptom of babesia. Interesting. I'll have to mention that to our LLMD.

PMing you.

Wilma, I just read this to my boys, and they said: Yeah! I am SO glad for you. Great news. And, this is exactly what this forum is all about!

Sounds like a sensory modulation issue, which has to do with the "quality" of something (loud/soft, throwing hard/soft, etc.) Because it's a sensory issue, it very well may be related to PANDAS.

Very interesting. Let us know what the LLMD says. [

Very, very nice. I was just noticing the Sydenham's Chorea not remitting with PEX. My son is diagnosed with Chorea (some have said Sydenham's, and other's haven't said at all. But, he got great remission with PEX until everything came back, because of lack of sufficient ongoing tx. When you say "remission", do you mean "cure" or just that it gets better for a time?

Dr. B. makes it a point to do it very, very slowly. I don't know about the others.

Really good questions, and no hard feelings taken. I asked the same. First...we did do Dr. C's test (I think we may have been one of the first.) Not everyone did Igenex for testing. We did not, and everyone in my family is diagnosed with Lyme (used Quest WB for 3 of us, and LabCorp WB for the 4th.) Also, went to an LLMD for diagnosis & tx. Lyme is actually a clinical diagnosis (per CDC), and even though my 15 yo DS did not have symptoms we would have guessed were related to Lyme, we decided to trial him on doxy. He herxed worse than the rest of us combined. About 2 months into tx, he also came out the Bartonella rash on both of his inner arms. I also did not test completely positive, and did not have "typical" symptoms, but since starting on doxy, I have been herxing, as well, and certainly something had to be triggering my non-stop MycoPlasma Pneum. that I didn't know I had for 3 years. My boys are both getting tx for Lyme, strep, mycoP Pneum (that I probably exposed them to) one has even had MRSA and are both getting IVIG to help improve their immune systems to fight off all this stuff. They both also tested positive for an immune deficiency (per standardized, govt. approved testing.) I think it's easy to question why so many people are finding a Lyme connection, but maybe that's really one of the underlying problems in many of these kids for so long. Then again, how many of us have not been questioned ad infinitum about the "questionable" PANDAS dx? Actually, my understanding is that Igenex does NOT find positive in everyone. There's an extra band or 2 (am I correct on that one?) that was taken out by the other tests, because of a vaccine for Lyme that was either being created or was created, and would have given too many false positives (am I correct on that one, too?) Anyway, no one even knows exactly what causes PANDAS/PITANDS anyway, and I can tell you from my clinical practice (I work with children,) I keep finding kids who I am "positive" have something of the sort...whether triggered by strep, staph, Lyme (yep...they're all in question in my patients), and I don't have a big practice, and it's not unique to where I would find kids with this diagnosis. So, although a very good question that you've asked (and I certainly asked the same before I tested,) I can't question the fact that my kids seem to be getting better with tx. And, the bottom line is...that's all we want for them.

Buster, this is very interesting, but I'm curious about the kids who have SC, like my son? He's diagnosed with PANDAS, and he does not have ARF (been ruled out). Where was the literature that ruled out SC with PANDAS? I hadn't heard that one.

Why are you cancelling PEX? That was one of the best things we ever did. Took a humongous edge off the entire set of symptoms, and even as bad as things got months later, because he never got the PEX he was supposed to get (all the problems at the hospital at that time,) I truly believe it was what made most of the difference for both my boys. But, there's no question in my mind that it definitely needed to be followed up with IVIG, and now that we are also finding Lyme, needs the Lyme tx, too. This is such an amazingly complicated disorder.

OMG. That could not have been a more accurate depiction of our 3 year battle with our school district. They finally agreed to settle, and then (after the "summer") we had to take them right back to mediation!! That was absolutely hysterical. Thanks for sharing it. I think I'll go to bed now, laughing.

Living in VA, I would suggest Dr. L (peds neuro) in MD, but I have heard that she is not taking new patients anymore. It might be worth a telephone call to her office, to see if that's changed. Otherwise, I would suggest you go a bit further to Dr. B. in CT. He is an immunologist, and since this is an autoimmune disorder, it certainly makes sense (and he's wonderful.)

I would suggest that you contact his office, and ask them if they will send you orders for any tests that he may want to see. You can then get it done in time for the visit. That way, when you get there, he will already have them in your chart, and this will help him make a dx. He did that for us.

Beautiful! I so hope it continues.

It's too bad I couldn't figure out how to cross post this, because both forums can't see the other's answers. But, several people on the Lyme forum have mentioned that they also had the thumb pain, and also mentioned the deep leg pain, which I have also gotten. They also mentioned toe pain that went away (although my first thought would have been gout, with that.) The pancreatitis could have been from any of 2 antibiotics and/or 2 antiseizure meds. Since the doxy was the last one on, all the docs (including ER, LLMD and Dr. B.) all agreed that doxy would make the most sense to pull him off. The pancreatitis got better (along with also being on a liquid diet for quite a few days...it was awful.) We don't know whether it was from the doxy alone or maybe it just threw everything over the top.

Thank you all. Yes, I'm also getting the deep leg pain. Sometimes feels like I can't stand on them. I was concerned that it might be a reaction to the doxy, but now sounds like maybe the tx is working.

I couldn't figure out how to post this on more than one forum, so I've cut and pasted it here. I suddenly developed thumb pain after starting doxy this past month. When I mentioned it a few weeks ago, my DH said that his have also been hurting, but his have hurt for several years, and he is diagnosed with RA (although he's also diagnosed with Lyme, and is being treated for it.) Today, when I mentioned it again, my DS 15 said that his has been hurting off and on, but can't remember when it started (his memory is pretty bad since getting sick with PANDAS/Lyme 7 years ago), but I have never heard him complain about the pain prior to starting treatment for Lyme. He started his tx 2 months ago, but got off the doxy 1 1/2 months ago when he came down with pancreatitis. He is taking bicillin injections (has had 1 about 1 month ago, and is scheduled for another this week) + flaggyl (200 mg/day 1 week on and 1 week off...just started this past week) + was taking azith (500 mg/day until 1 1/2 weeks ago,) but switched to Augm XR (2000 mg/day), and is on some antiseizure meds, as well. He also takes Nystatin. I currently take doxy (400 mg/day) + azith (500 mg/day). I also take Nystatin. We both also take an assortment of vitamins, fish oil, etc. Any ideas? It definitely feels like there's swelling, and I just started back on the nystantin 2 days ago, because I could feel my whole body bloating up like it does when I've got yeast. Oh, we also both take saccromyces boullardi and probiotic pearls. Thanks.

I suddenly developed thumb pain after starting doxy this past month. When I mentioned it a few weeks ago, my DH said that his have also been hurting, but his have hurt for several years, and he is diagnosed with RA (although he's also diagnosed with Lyme, and is being treated for it.) Today, when I mentioned it again, my DS 15 said that his has been hurting off and on, but can't remember when it started (his memory is pretty bad since getting sick with PANDAS/Lyme 7 years ago), but I have never heard him complain about the pain prior to starting treatment for Lyme. He started his tx 2 months ago, but got off the doxy 1 1/2 months ago when he came down with pancreatitis. He is taking bicillin injections (has had 1 about 1 month ago, and is scheduled for another this week) + flaggyl (200 mg/day 1 week on and 1 week off...just started this past week) + was taking azith (500 mg/day until 1 1/2 weeks ago,) but switched to Augm XR (2000 mg/day), and is on some antiseizure meds, as well. He also takes Nystatin. I currently take doxy (400 mg/day) + azith (500 mg/day). I also take Nystatin. We both also take an assortment of vitamins, fish oil, etc. Any ideas? It definitely feels like there's swelling, and I just started back on the nystantin 2 days ago, because I could feel my whole body bloating up like it does when I've got yeast. Oh, we also both take saccromyces boullardi and probiotic pearls. Thanks.

Huge Cyber Hug

I am so glad for you that she's doing well. I believe that you said that she's diagnosed with Primary Immune Deficiency? If that's so, does she need to keep getting the IVIG every 21 days? Also, will she continue on abx? I know that continued abx for my children has made all the difference, especially my son who was suicidal and depressed like your daughter, and the abx (like your IVIG) worked overnight. It was miraculous. I would suggest that you talk to your doctor about continued care. As I recall, you are scheduled to see Dr. B? If so, that's good. Happy Holidays. You and your daughter deserve it.

I don't disagree in the least with what you are saying, or what anyone else is saying, but I think that we need to look at our own individual family members, find specialists, and then in the end...go with our guts. When I asked our pediatrician the other day what he thought we should do about something, his response was: "you have always gone with your gut, and it has steered you correctly." I really needed that response, because with all the fighting I've had to do over the years with sick children, and doctors who tell me that "PANDAS is voodoo," and the like, I really needed someone to reinforce that this is, in the end, a very individual clinical picture. Personally, I still have a hard time believing that everyone in my family has lyme. But, as several have mentioned, if the medication is working, then really, what difference is it that you call it Lyme, PANDAS, etc. I've mentioned repeatedly, that my 15 yo tests least positive for lyme (only band 41,) but he's been herxing worse than the rest of us combined (about 1 day "episodes" with a new course of abx.) My husband tests the most positive (2 out of 3 IgM bands +, and, I think, 2 IgG bands +.) He's certainly the most symptomatic...diagnosed RA, but the RA meds haven't worked for 4 years. Symptoms came on suddenly 4 years ago. So, of course, we treat. My 18 yo (he's now 18...bday was yesterday ) also has PANDAS, but he's always complained of terrible joint pain. He had 3 or 4 positive IgG bands. We're treating, because of the symptoms. I have 3 IgG bands positive...occasional joint and muscle tightness and pain, but what I attributed to the "aging process." I also tested positive for MycoP (both IgM and IgG,) and everyone in my family had high IgG to MycoP. Whenever I try to stop the azith for mycoP, my asthma symptoms come back as bad as always. I started on doxy this month, and I'm having less muscle and joint pain and tightness. Is it Lyme, is it part of the PANDAS process (and reality here, is that no one really knows for sure what is PANDAS/PITANDS, except autoimmune causing neuropsych symptoms)? Who knows, but clinically, my family is responding to Lyme tx, so it certainly appears to be Lyme for us. But, there's also no question that my boys have an autoimmune disorder causing neuropsych symptoms, and they have a very strong hx of strep, sinusitis, and we have a very strong hx of autoimmune disease in the family. So, we're also treating with IVIG (and did PEX last year.) But, it certainly doesn't hurt to have debate on this issue. In the end, we really have to take all the information we have (and don't even have), and continue to go with our guts!

Personally, I would fill it for 2 reasons: DS1 and DS2. In other words, to protect your DS with known PANDAS, and to arrest any possible PANDAS symptoms for DS #2.