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Everything posted by tpotter

  1. http://www.jneuroinflammation.com/content/10/1/43
  2. Thank you Dedee. It does help to hear from a cardiac nurse. He is supposed to get an appointment ASAP for a stress test this week. DH just had a mitral valve replaced 2 years ago, so it's especially scary. What I wanted to know was if this could be infection triggered, because I doubt the cardiologist would think of that, and I want to make sure that if he needs surgery that we are still getting to the root cause. And, at least knowing, we might be able to get very, very aggressive tx at the insurance company's cost for a change. Yes, it is very scary. DS was amazing the other day. I took the call, but he was home for a few minutes between shifts where he works (he took a double shift yesterday). He had me put the phone on speaker, because he was in the middle of something. He asked some really good questions. Today, when I told him he needs to make certain they don't have him do any heavy lifting at work (he works at a grocery store), he told me that I was "just over-reacting" I know that he's concerned, though, and interesting HE brought up the issue of if he needs a new valve, he would probably get the "pig's valve", because he doesn't want to end up having to take coumadin like his father. But, I know he's concerned. And, no, it's just not fair that he keeps having so much happen!
  3. OMG...I just looked up bart + heart, and they specifically mention the case of a 6 year old with bicuspid aortic valve and aortic valve calcification: http://ats.ctsnetjournals.org/cgi/content/full/77/2/704 I just printed out the article, and will ask him DS to bring it to his cardiologist. I'll also talk to the LLMD about it and ART.
  4. I will. He hasn't been treating DS20 for about 1 year, because DS20 developed recurrent C-diff, so we had to stop using abx. We are seeing ART on Monday, and I'll ask her. But, I also thought I'd ask you guys. I'm also wondering if it was all the junk food and drink he was having (like Monsters, Mt. Dew, no fruit and veges, lots of burgers, etc...keep in mind he's a college student away at school for the first time.)
  5. I will add to this. We also do ART (that's what Dr. S. does that Christianmom mentioned), but we use a different provider...both are good, though.) But, we are also followed by an LLMD, and have been using abx according to the ILADS protocol, and have for the past 2 1/2 years. If you are dealing with Lyme, I truly believe you have to use abx, but need a good protocol, and also use a natural approach, as well to support the immune system, gut, clear the body of other things like parasites, mold, etc, that all play a role in clearing lyme. It's not easy, and certainly not inexpensive. It will take time.
  6. Just got a callback from DS20's new cardiologist. He was born with a congenital functional bicuspid aortic valve, that we found out about 5 years ago, when he was having a R/O for Marfan's Syndrome (didn't have that.) At the time, and up until his last appointment at 18, he had a mild leak, and just needed to keep an eye on it. He went in this week, and the doctor called back last night, and said the leak is now moderate to severe, and he has to go in for a stress test, so they can determine just how bad it is, and if he is going to need surgery! I am very worried, because DH already had a mitral valve replaced 2 years ago, and now is on coumadin...dr. tried to repair it, but couldn't. DS has chronic lyme, viruses, and lots of stomach issues, plus has Asperger's (although IVIG helped increase his social skills by 7 years overnight, so I suspect the Asperger's was probably PANS all along.) Being a college student, he had an AWFUL diet for the past 2 years, getting even worse when he actually went away to college this past year. To all my incredibly intelligent and wonderful online friends, does this sound like anything lyme-like or otherwise that could make the leak worse in just 2 years, or could it have been the diet, or something else? I know if I ask the cardiologist, he won't have a clue (I've learned that traditional drs. just don't get it, and I also know that symptoms we've seen in the past with my other DS, such as enlarged spleen, low WBC, etc. turned out to be babesia....which you guys suggested to me.) Thank you
  7. Couldn't say it any better myself. We are still dealing with abx for one of my children, and myself, but working towards the day that it's not needed anymore. The reason the 2 combined, is because we now know that PANDAS/PITAND are umbrellas under PANS as is Lyme, and viruses, and environmental issues, and genetic issues that all play a role in causing autoimmune neuropsychiatric disorders. And, it really is important for so many of us to try to get the whole picture, so if our children are not getting as better as they should, we have the information and resources that we need to help us figure out what may truly be going on.
  8. Can't figure out which generic drugs, except lipitor and a "pediatric amox. clav" (does that mean just the liquid? DS has been taking the pills for quite some time, and his strep levels just won't go down.
  9. We saw Dr. Elia when DS's symptoms got their worst...5 years ago. We went in 3 times. DS was extremely severe (I now believe he would have died had we not found a different dr. shortly after that, who got him the IVIG and later PEX that he desperately needed at that time.) Dr. Elia did have us look at the plasmapharesis lab, but they determined that DS would not be able to have it put in his arm, so she was hesitant to do the procedure. She was very worried about the safety of doing a PICC line, but my DS was so sick, that his life was in a very, very bad place. She even interviewed him. She did not even call us back to tell us that she had decided not to accept him for PEX. We were left hanging when there was almost no other PANDAS doctor. Not all of DS's symptoms were consistent with PANDAS (such as the rages he had), although we now know that the symptoms over and above the OCD and tics which she was looking for, were probably due to the mycoplasma pneumonia, bartonella and babesia that he ended up having, in addition to strep, viruses, and who knows what else, but we did not know that then. I don't know if she now understands and accepts PANS symptoms as a whole. I know that some people have been very happy with her, and I know she has been very helpful to those. But, she would not treat my son, would not even respond to our calls or emails after 3 visits that we paid for, and honestly, left us hanging.
  10. And,on that note. IgG should be going down over time. If it suddenly goes up, then there may be another mycoP infection that is not presenting as IgM. Keep in mind that the blood test says that IgG could be past OR PRESENT infection. Some people do not get a rise in IgM titers. My DS' IgG titers go up when my IgM titers go up (tend to double), and even my pulmonologist had to admit that it was significant, and sputum should be checked. Unfortunately, DS didn't have any sputum to check.
  11. Where do you live? I know someone in MD who homeschooled her kids, and can give you direction and support if you want to PM me.
  12. I agree with this. DS (now 20) was tested several times, as he was dx with Asperger's in 7th grade (but was symptomatic as long as I can remember). He developed tics in 4th grade, but then we figured out they seemed to be related to gluten. Blood tests indicated that he did not have PANDAS, after his brother had sudden onset PANS (but took 4 years to get a dx.) Finally, we took him to a PANDAS specialist along with his brother, who put him on abx (azith the first time), and within hours he was 100% better (didn't last, because we are still dealing with other things like food sensitiviites, etc.), but between that episode and 2 more in which abx turned him around overnight, I have to urge you to, at least try abx. Now, it is possible that there is more going on, too. We do know that lyme, and possibly bartonella, babesia, viruses, and of course food, could be playing a role, and although he is mostly functional (attends college), he is really struggling right now. I would suggest that you try abx. I also living in the Philly burbs. PM me with where you live, who your Pediatrician is, and I'll give you some info to lead you to a dr. who can help you. Dr. Elias is very conservative with tx, and I don't think she tends to prescribe abx (at least she didn't when we first went to her.) Dr. T. also can be limited. Again, it was trial that told us our son had more going on than just tourettes, bipolar, asperger's (which incididentally, when given IVIG, improved his social skills by 7 years.)
  13. Does she have "stretch marks" anywhere on her body. Typically, they would be deep purple or red, and if so, they may be a bartonella rash instead. Check out these pictures for examples: http://www.lymediseaseassociation.org/index.php?option=com_phocagallery&view=category&id=27:bartonella&Itemid=331 Also, does she have foot pain (mine was the bottom of my feet, and particularly when I awoke in the a.m.) This is another symptom of bartonella. Additionally, mycoplasma pneumonia and babesia can make one rage. Symptoms of babesia include low WBC, elevated liver enzymes and enlarged spleen. Sounds like she may be herxing very badly, and you may need to cut back on the abx, and increase detox to allow her to not herx quite so badly. Godo luck.
  14. How old is your child? If between 4 - 12, and newly ill, have you checked the NIMH study? They pay everything, including dx, and all tests and travel, etc, etc. if you qualify. http://clinicaltrials.gov/ct2/show/NCT01281969
  15. I am so happy someone else has found the pb connection. 1 medium handful of peanuts or 1 - 2 T of peanutbutter would stop my DS from raging within 1-3 minutes tops! I couldn't explain it for years, and then someone told me about the tryptophan. And, I also suspect that the fat taking the tryptophan straight to the brain helps, AND, I also suspect it helps stabilize blood sugars. Do you have your DS taking detox, like activated charcoal and/or bentonite clay? I would do that, but make sure it's well away from other meds (I do these either 1 hour before or at least 2 hours after other meds. Also, do you have a good chiropractor? We find that helps tremendously. If you don't already have one, I don't know if I'd try one out while on a PICC line, only because they can all be so different. We had to try several, before we found one (now we have 2 in 2 different states) that worked for us. And, I agree with Philamom...get him excused from PE. I don't like the idea of that PICC line getting knocked around. DS was excused from it (or they did quiet activities that he couldn't get it knocked on) while he was getting IV abx. Cyber hugs for both you and your DS.
  16. I would also check for viruses, such as HHV-6, HSV, Parvo, Coxsackie, EBV. Even if only the IgG is high, that indicates that he has recently been exposed (and may also indicate that it is chronic...as the lab reports say, it does not indicate whether it is old or new), you should probably treat it. It can be treated with valtrex. Viruses never completely go away, and when the stress level is added to the person (such as more infections, actual stress, etc,) they can be activated. Also, check for mycoplasma pneumonia (an atypical walking pneumonia.) And, make certain that you check everyone in the family, because otherwise, you will just keep giving the infectious triggers back to him. I would suggest that you consult with an LLMD (Lyme Literate MD), because: 1) lyme testing has lots of false negatives, so they are able to help figure out by symptoms if there is lyme and/or co-infections, such as bartonella, babesia, etc. and 2) even if there isn't lyme et al, they tend to understand about all the other infectious triggers to treat for, and how to treat them. It frequently takes multiple abx simultaneously, because this is an autoimmune disorder, and as such it tends to be triggered by more than just one infection. There's more, but that is where I would start if I was starting all over again.
  17. From our perspective, what has helped us the most is working with an LLMD to treat the whole family, and also doing alternative treatments, such as chiropractics (with a holistic chiropractor who does muscle testing, and also treats with some homeopathy and supplements), and ART. ART has told us a lot more about what we are actually dealing with in our family, because they can test for different things by energy testing (so we know, for instance, that DS has strep still in in kidney...never knew that...still dealing with bartonella...thought it was cleared, parasites, mycoP, etc.) If you want more info about ART, PM me, and also let me know where you live. It is expensive, but I think we are getting quite far with it.
  18. I am going to ditto this. I was the one carrying the mycop, and everyone in my house has/had lyme, bartonella, babesia, etc. Unfortunately, DH had to stop tx with abx, because he is on coumadin, and we are not certain how to get this treated at the moment (anyone have ideas...please help...his IgG for mycoP is extremely high IgM is borderline very high, I can't get rid of my IgM, and I seriously doubt his lyme, et al is gone.) DS20 also can't take abx, because of recurrent c-diff. So, everytime he comes home from college, DS17 flares up. I can't stress enough to make sure you, and everyone in your family are not also sick. Although I have my moments (the kids laugh about "Moody Mom", I am nowhere as stressed as I was a few years ago before we found the mycoP, and then the lyme. Huge Cyberhugs on this very, very special day.
  19. Does anyone know of anyone who has been cured of NMDAR Encephalitis, and if so, what was the tx they used? And, when I say cured, I don't mean waxing and waning of symptoms, but rather really, really gone. Thanks.
  20. We actually did not have to suspend abx, although that was my first thought. Instead, when I found out it was probably due to infection (saw hematologist, who agreed), DS started on IV abx. It was after that, that ACN friends suggested the possibility of babesia. Also, IV abx confirmed that stretch marks were actually bartonella, because the faded approx. 50%. I'm also still fighting the mycoP bug. My titers dropped from 1750 - approx. 1050, but then recently went up to about 1130. I suspect I was exposed at work. Very, very hard to completely get rid of, and it is very frustrating.
  21. And, DS had that, too. There are different treatments for each of these (babesia, for instance, is a parasite, and is treated like malaria is treated.) So, don't just assume that it is being covered. I would definitely ask your LLMD about both of these.
  22. LLM...I just absolutely love your posts...70 degree days, 50 degree days, etc.
  23. Just a hypothesis on my part...you mentioned that she is being treated for lyme. I do know from personal experience (my DS) that low WBC and elevated liver enzymes can be indicative of babesia. Could she have babesia? All of these symptoms went back to normal after tx.
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