Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by Christianmom

  1. We are temporarily without insurance for my son and his lyme doctor has suggested possibly trying IV rocephrin with a PICC line after the next visit in a month. We may have insurance again by then, but if not, is there anyone without insurance who could tell me the cheapest way to get a PICC line and IV-rocephrin? Thanks!
  2. Nancy, One thought might be to have him take this class without having to worry about the AP test at the end. In other words, he would be well prepared to take the course in college, but would not be under the stress of having to actually get the material down well enough to pass the AP exam. It would at least take a little pressure off him. If he wants to skip the course, in college, perhaps the college he wants to go to will allow a CLEP exam to pass in for it. CLEPs can be taken anytime, at his convenience--no pressure. Cost about $100. Not all schools accept them, but it is a thought. My older two children have taken several. Saves lots of money. I have personally taken two AP classes--biology and chemistry. Stressed out all year in the biology class only to get a non-passing score on the actual AP exam, though I got a "B" in the class. With chemistry, I never even considered taking the AP test, relaxed in the classm and learned much more. Got an "A" in the class. Also, perhaps when he does go to college, he can just take 12 credit hours instead of the usual 15. I know that is extra money, but in your son's case it may be worth the extra cost to take away the pressure. Lots of people take five years to graduate. He could make up the difference by going to college in the summer if he really wanted to. So glad your son is doing so well! It's a great encouragement to me.
  3. I have a friend whose has an appointment for her son to see Debbie McCabe for lyme treatment. If anyone has or is seeing her, would you please PM me on your experience so I can tell my friend what to expect. Thank you.
  4. So sorry for what you are going through. I as well have had PANDAS-believing (and chronic lyme-believing) doctors tell me my son didn't have PANDAS or lyme and that he simply needed psychotrophic drugs. Just move on, this doctor isn't right for you, though he may have helped others. My son as well had a high CamK (168) as well as sudden-onset OCD. Though my son has not had IVIG, he did have a year of PANDAS treatment with little improvement. I believe now his real problem never was PANDAS but that strep simply exacerbated an already existing lyme/bartonella/babesia infection. Lyme treatment is the only thing that has really brought any improvement for my son.
  5. I am looking into the "Bridges to Access" program (www.bridgestoaccess.com) to help pay for my son's Mepron. It is a patient assistance program through GlaxoSmithKline pharmaceutical that pays for Mepron and a few other drugs if you make below a certain income (the income level is fairly high). I was wondering if anyone has tried this program and what you think of it. Thank you.
  6. My son's Cunningham results in February of 2011 while in exacerbation were: D1--2000, D2--4000, Lysoganglioside--160, Tubulin--500, CaM KinaseII--168 My son's ONLY symptom was, and continues to be, OCD. Dr. T tried everything to get my son better. In the end my son was diagnosed with lyme. He didn't get better until we started lyme treatment with an LLMD.
  7. My son takes Doctor's Best High Absorption Chelated Magnesium, 4 tablets per day (400 mg. total) for detox, but mostly it helps him sleep at night. If he forgets to take it, he usually doesn't sleep well. His doctor said it is critical that my son get sleep in order to heal, so if the magnesium doesn't work, I give him 1/2 a sleeping pill. He has had to take the sleeping pill only about once a month.
  8. Nystatin is a drug to kill yeast, so I can see where it may cause a herx if there is yeast die-off. The dosage seems low. My son takes two 500,000 unit tablets twice a day for a total of 4 pills.
  9. I was curious which doctor's you have already tried. With positive lyme bands, I can't see have a PANDAS doctor can help you. Dr. T in particular, though he is very, very kind, knows nothing about lyme treatment as by his own admission. It seems like most of the drugs your son has been are drugs that a PANDAS doctor would try. I'm not sure what a PANDAS doctor can do for you unless you are looking for IVIG or PEX. And if you son has lyme, IVIG and PEX will most likely only give temporary relief. Any good lyme doctor should be very familiar with treating PANDAS. If the one you have isn't, I would get another one. My LLMD sees PANDAS as a co-infection of lyme because so many of his young lyme patients also have PANDAS.
  10. I'm so sorry for what you are going through. My son was positive for band 23, another lyme-specific band showing exposure to lyme. I asked Dr. H about this because I never really understood what the expression "exposure to lyme" meant. I said, "Does this mean at some point my son was bitten by a tick that had lyme?" He said, "Yes." So it didn't mean that perhaps a tick with lyme had crawled on my son causing the band to appear. For that band to appear, he had to of been specifically bitten, directly exposing him to lyme. I would think Dr. J would at least consider treating for lyme, especially since your son has been sick for so long. If he won't, you can certainly try another LLMD. I believe Dr. H is not far from Dr. J.
  11. I'm not sure who your doctor is, but you may consider getting another one if he's not prescribing the dosage your son needs. It is very easy to waste a lot of time on wrong antibiotics dosages and combinations. For us, we started out with Dr. T. Though I think the world of him and will always be grateful for his great compassion, if I had to do it over, I would have gone to an LLMD from the beginning, whether or not my son had lyme. My son in the end had lyme (as well as a reaction to strep), but it really doesn't matter whether your son has lyme or not. An LLMD can treat PANS because most lyme kids have PANS. And LLMDs are used to prescribing antibiotic combinations because it is necesary in treating lyme. In my opinion, experience is everything when deciding what antibiotic combinations to use and at what dosage.
  12. Adam's discount pharmacy in PA has discount drug prices very close to what you can get by ordering from Canada. The website is adamsdiscountpharmacy.com. It takes about two to three days to get your medicine in the mail. He is unable to get generic alinia or generic tindamax. However, his non-generic tindamax price was much lower than CVS or Walmart.
  13. Hi Kathy N, Don't want to steal this thread, but basically after our experience with Dr. Elia in Nov. of 2011, I continued to work with Dr. T running lots and lots of bloodwork. Eventually things started strongly pointing towards lyme. Dr. T had already tried many antibiotic combos on my son without success (which is why we were pursuing plasmapheresis) and suggested I find an LLMD (though he encouraged me that he would always be there if we still needed him). We chose to pursue Dr. Klinghardt's natural treatment of lyme through Dr. Schwartz in Jenkintown, PA because my son had already been on antibiotics for 15 months and I was concerned about this. My son began seeing Dr. Schwartz in January of 2012 and improved slowly to about 80% by December of 2012 and seemed like he would soon be at 100%. For the most part, he was antibiotic-free during that time, though he was on many, many supplements. In January of 2013, he began to quickly and drastically regress. We were frightened to continue down the natural path and were able to get in with Dr. Horowitz's assistant, Dr. Yunker, so we pursued that path. We began with her in the beginning of March of this year. (We saw Dr. Horowitz himself as well for about 45 min. He was very kind. I asked him what went wrong. He felt that my son's lyme had simply broken through the natural antibiotics). Dr. Yunker treated my son for parasites (for the second time, Dr. Schwartz had done this already) and my son soon came out of the "worst of worst." She is now trying different antibiotic combinations. Currently he is on amoxicillin 4,000 mg. (will up to 6,000) with Probenecid. In a couple of days we will add azithromycin/tindamax (4 days azith/3 days tindamax). He is also on several supplements for inflammation, KPU, and methylation. Since we've been going to Dr. Howowitz, my son's had great days when you'd never know anything was wrong (like yesterday), good days, and bad days. But no terrible days like we had in January. I cleared space in my inbox if you want to pm again. Sorry, I didn't know it was full!
  14. Beeskneesmommy -- I should have clarified about the cost. When Dr. Elia was at CHOP, CHOP participated with my insurance, but Dr. Elia (though she worked for CHOP) did not. Therefore, she was covered as out-of-network. Most people have a high out-of-network deductible as I do, so basically we paid the whole bill. I do believe she gave some discount for paying cash and that the actual bill was about $750. In terms of Dr. Elia being a place to go if you feel your child needs plasmapheresis, I wouldn't in any way see Dr. Elia as a sure bet. In my opinion, she is far more likely to deny plasmapheresis than to allow it. She has a reputation to keep and she will only allow plamapheresis if she is pretty sure of success. As I mentioned, I both begged her and had a referral for plasmapheresis from Dr. T, yet she would not even considering trying it with my son. Jag10 -- I am sorry for what your daughter went through. When I was in with my son I was expecting to have a pretty easy ride for plasmapheresis because Dr. T had sent her an e-mail highly recommending it for my son (included a video of my son to show the severity of his OCD). (Dr. T has no access to plasmapheresis. He would have sent me to Dr. L, but at that time she had limited hours, so he felt Dr. Elia would approve it faster). When Dr. Elia not only would not allow the plasmapheresis, but diagnosed my son with severe regular OCD, I mentioned Dr. T's e-mail to her. She opened up her e-mail in front of me, looking for his e-mail. She had pages and pages of unopened e-mails. She found the e-mail from Dr. T which had been sent many days prior. She had not opened it. She said she's too busy to read e-mails. Though she said it kindly, this is quite a statement to make, especially since the e-mail was from a doctor. If I had it to do over, I would have asked Dr. T to personally call her. He told me out of professional courtesy, all doctors read e-mails from other doctors immediately, so a phone call wouldn't be necessary. He also felt the attached video would be "better than 1000 words" as he put it. He was shocked when I later told him she hadn't even read the e-mail. It wouldn't have made any difference though, even if she had. When I mentioned Dr. T, she simply said she and he have a different opinion on my son's diagnosis. That's OK, but she left no window open that perhaps he was right. She was emphatic that there was no way she could possibly be making a mistake. I think one of the biggest problems is that she is a psychiatrist. Dr. T is not. She saw herself as the correct one to make a psychatric diagnosis, not Dr. T who is a neurologist. Where Dr. T will say antibiotics first, psychotrophic drugs as a last resort, Dr. Elia will say psychotrophic drugs first unless there is emphatic evidence to do otherwise. This was very disappointing to me. On the other hand, I do know of one case where she did allow plasmapheresis for a very, very severe child. This child was raging in the hallways at the hospital--a very different presentation of PANS than my son who is calm and personable. Nonetheless, he was very ill and we had to help him walk into her office. I was resentful as well at the time though I know God used it both in my son's life and in ours, but looking back I simply see the problem as ignorance on her part of the true PANS picture. For instance, she doesn't understand the lyme trigger of PANS at all and wouldn't discuss it with me. Most PANS doctors after seeing the bloodwork that I brought to her, would have at least told me to see an LLMD (Dr. T did). So as I said, she is a psychiatrist first and foremost. I wouldn't even describe her as a psychiatrist that believes in PANS because she only believes in it by her definition. And PANS has many, many presentations. But as psychiatrists go, she is probably better than most for a PANS child because most don't believe in PANS at all. CHOP itself isn't PANS friendly. I just think for most on this forum, a psychiatrist is not the way to go for medical help. And medical help is what our children need.
  15. Dr. Elia is a psychiatrist, so expect that your child will be fully evaluated psychiatrically by her. If your child is older, she will insist on talking with them alone (no other doctor has insisted on this with my son). I have been to Dr. T, Dr. Schwartz, Dr. Beals, Dr. Horowitz, and various other less-known doctors. None of them asked any of the personal psychiatric questions Dr. Elia asked. She made me very, very uncomfortable. She is a very kind person, but she is nonetheless a psychiatrist first, a PANDAS doctor second. Even though she gave a very kind evaluation of my son psychiatrically, I didn't appreciate being put on the defense. And I didn't appreciate at all the questions she asked my son, nor the records she kept. The questions were very personal. She asked my son to describe in great detail his OCD. He did well with it because he is a pretty open, talkative person. But a lot of children would not have done so well. Additionally, she only believes in classic sudden-onset PANDAS. And sudden-onset is by her definition. In other words, very, very immediate onset of severe OCD. My son's OCD was mild for a couple of years followed by sudden-onset severe OCD. This did not fit her definition of PANDAS. If your child doesn't fit her definition, she will diagnose them with severe OCD as she did with my son. She is the only doctor we have seen thus far that would not even consider my son as having an infection-driven illness, though I showed her bloodwork showing otherwise. She dismissed the bloodwork as showing illness that was simply exasperating his regular OCD, not in anyway causing it in the first place. I was sent to her as a referral from Dr. T for plasmapheresis. Dr. T was taken aback by her lack of even considering plasmapheresis for my son. She was emphatic that my son simply needed Prozac. She went as far as to repeatedly tell me that I was harming my son by continuing to pursue infection-driven triggers for him. She made me feel very guilty. When I got home from my visit with her, I e-mailed Dr. T and did a phone consult. He completely disagreed with her diagnosis and urged me to continue with testing. In the end, that testing showed that my son's infection trigger was lyme. Dr. Elia was completely wrong. I am so thankful to Dr. T for sticking with me through that time and encouraging me the way he did (as well as SF Mom). She is also very, very expensive ($900 for initial consult, I think) and does not take insurance. And though she does have access to plasmapheresis she is not openly offering it except in what she considers very severe cases. She said my son had one of the most severe cases of OCD she had ever seen. When I begged her (literally) to at least try plasmapheresis, she would not, because, as I said, he did fit her definition.
  16. My son just had the C3a/C4a tests run a couple of days ago and these are the Quest tests that I asked the hospital to order: http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=52642&labCode=QBA http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=42658&labCode=QBA I told them it was important that these exact tests were ordered so it would go through Jewish Health. I haven't gotten the results back yet, so I don't know if they actually did order the right tests. If you have trouble getting these Quest tests run, you can have the hospital send your son's blood directly to Jewish Health. I believe the tests are pretty inexpensive ($60?). Also, maybe try running the TGF-b1 since insurance will cover it?
  17. I would also add that a patient can have ONLY neurological problems with no physical symptoms, as is true with my son.
  18. So sorry for what you are going through. Yes, there is hope for older kids! I would hope that no one on this forum would give up just because of their chid's age. My son is 18 and he wasn't diagnosed until 16. If I were you I would look into lyme, bartonella (big trigger for OCD), h. pylori, KPU, babesia, parasites (big trigger for OCD), viruses, yeast, stool analysis (Metametrix), strep (even if his titers aren't high) and the meningococcal vaccine. I would also run the TGF-B1 which, if high, is usually an indicator of chronic infection. And as great a doctor as Dr. K is, he may not be able to help you with all of these things. I would find a GOOD LLMD. I wouldn't rule out lyme just because you don't get a positive lyme test. Your son would certainly have a clinical diagnosis of lyme which would merit at least pursuing that. One thing that I have found is that any good LLMD can also treat PANDAS (my son had both), so hopefully with a good LLMD you can be covered for both. However, I don't think that a good PANDAS doctor can successfully treat lyme. And if I were you, I wouldn't jump into IVIG. I was in the same situation as you a year ago--seeking any sort of help for my son, especially because of his age. But you may find that if you pursue other things, the IVIG may not be necessary. Or you may find that you need to treat other things before going to IVIG. In our case, it looks like we will be able to avoid the IVIG altogether. Augumentin didn't help my son either. Biaxin was the only drug that pulled him out of the severest of his OCD. Interestingly, Biaxin is a big lyme drug, though at that time, I thought my son only had PANDAS, not lyme. I had never seen a tick on my son and he is not a super outdoors type of person. He always wears long pants. He is that last of my children I would have ever expected to have lyme. My son's biggest problems are/were parasites, KPU, and bartonella. His ONLY symptom is severe OCD. In the beginning he was very much like your son. He had sudden-onset completely debilitating OCD. Hang in there. He can get better! Wishing you well.
  19. My son was very well (80%) when I started this thread. Within the last three weeks he has taken a sharp turn for the worse (he is at about 60%). Doctor feels the decline is from bartonella and biofilms. This week he added biaxin/mycobutin to my son's Klinghardt "lyme cocktail" to treat bartonella more aggressively, and added Cistus tea to treat biofilms. My son is having a pretty bad herx as a result. So he is now not at a good place to be judging the glutathione, though he is still taking it. One other thing, my son's doctor did not feel the improvement from glutathione that my son had was showing that his KPU treatment wasn't enough. He, therefore, kept my son on 4 CORE/day and did not up it. He feels the improvement was simply from the extra detox. it was giving him.
  20. I don't know if you've already done this, but if I were you I would seriously consider lyme. My son has chronic lyme and his only symptom had ever been severe OCD. If the stool analysis showed "parasite of unknown taxonomy," I would consider the possibility that it is babesia. It was in my son's case.
  21. My son was treated naturally for h. pylori with Pyloricil by Ortho Molecular Products. I'm not sure how severe his case was, but after taking one bottle, he was no longer testing positive for h. pylori by ART. It is very expensive, but one bottle may be enough. My husband was taking it for h. pylori as well (he and my son have the same doctor) and my husband as well only needed one bottle.
  22. Thank you for your reply. Overall the IV-DMPS push had no affect on my son, so we made another visit to the doctor last week. He examined my son thoroughly and feels the regression is from bartonella biofilms. My son had been off antibiotics completely for almost a year (except for one short course for strep). Instead, he had been on the Klinghardt lyme cocktail. Because of my son's recent regression (he's was at about 80% and is at about 60% now), his doctor added Biaxin and mycobutin (basically rifampin) to his cocktail. We added the Biaxin last Saturday and the mycobutin last night. He has had a good day today. We are hopeful. This is the first regression my son has had since we started his lyme treatment in January of 2012.
  23. My son's doctor recently started my son on a DMPS/glutathione/phosphatidylcholine IV-push to help him eliminate heavy metals from lyme biotoxins. His doctor wants the IV-push to be done once a month. He said it would help my son heal much faster. He suggested the treatment because my son had started to regress some for the first time since being treated a year ago. So far, it appears that the IV-push is helping my son out of the regression. He has done very well today. I was curious if there is anyone that has experience with the DMPS-IV push. Some things I have read about it are frightening, and I'm not happy that it is a drug, but so far it seems to be helping. Has anyone seen good results with this type of IV-push? Thanks!
  • Create New...