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Everything posted by nitshel

  1. Thanks so much LLM - will buy the zinc taste test kit right away. So I presume that your son could not taste the liquid but your daughter could taste it just a little -but in either case they did not find it "unpleasant" to taste - right?
  2. Good question pr40. I guess I was reacting to the phrase (in several threads) where I read that Lyme "supresses the Immune system". I don't think people meant that from an inflammation perspective only - but I could be wrong. I've also read the Lyme tends to hide where the immune system cant get to it. It also hijacks B cells in the Immune complex - again making it hard for the immune system to seek and destroy.
  3. All, I'm wondering what people have found to be really effective supplements / food items for boosting the immune system - apart from a wholesome diet and some exercise of course. I'm also not referring to IVIG treamtments which could be a late resort option. As we begin to embark on long term Abx , I want to provide DS with every advantage we can muster. From what I've seen Immune supplements are just mult-vitamins in a fancy bottle - are there exceptions to this rule?
  4. We gave our DS Prednisone earlier this year - before we had a positive diagnosis for Lyme. Honestly we were kinda throwing all kinds stuff at it to see what would stick. WIthin 48 hours, DS's symptoms were off the scale - we stopped the drug immediately - and it took us 3 weeks to get the spike to subside. In hindsight we now know that it was Lyme and supressing the immune system was not a wise decision.
  5. Thanks LLM - I think we need to get Buhner's books as well. I suspect we will need Abx for a while - this is going to be a long haul. I am prepared (well, maybe not really) for DS to get worse before he gets better. On the genetics, perhaps our son's MAO is not as much expressed as your DS - I think just because a gene exists doesn't mean it's expressed (?)...anyway am thankful for any small mercies... But its good to know that other's have passed this way and come out on the other side to a better place....I'm counting on friends and well-wishers on this forum to help us through the tough time ahead...we'll keep the updates coming.
  6. Update on our situation. We have started our DS on Enhansa for the past week (Advils were causing some trouble) and Immuplex to boost his immune system. We are already seeing some mild reaction / worsening - almost like a Herxing even before starting Abx. Not sure if this is normal. Our son is an overmethylator based on COMT and MAO results but we have him on Molybdenum to prevent the sulphites in Enhansa impacting him too much. LLMD is starting us off on Cefdnir - we plan to start next week just as schools close for winter vacation - fingers crossed. We also plan to use Japanese Knotweed to keep inflammation at bay.
  7. We asked our LLMD about going the IV route. She said she preferred Oral since our DS was too young (he's almost 8). Not sure what to think about that - mdmom, it looks like your kids were older.... @ mdmom - Do the Insurance companies make a fuss about the port-a-cath or similar set up? What level of "evidence" do they need - at the moment we have Advanced Labs and some "probable" Igenex tests but nothing like the Wwestern Blot that is the standard (but incomplete) test....
  8. Thanks LLM - our LLMD told us to treat herbs just like medicine - they are potent in their own right. Did you ask your LLMD about potential cross-reactions of herbs with each other - or did you just start off small and see what happens? And there are so many herbs out there! Also, where do you buy your herbs/ supps from? LLMD has us starting off with Cefdnir to attack the spriochette form of Lyme - and then adding Abx's as we go.....
  9. This has been very useful reading for us. We are about to embark on Abx (long term) for our DS. I'm really nervous despite the Enhansa, Immplex and other herbs we have prepared for him as we start Abx. Primarily I am scared of long term Abx issues - gut issues (DS always has these with Abx), immune issues and god knows what else. I just dont want to face the prospect of destroying some other part of his body through months and years of high dose Abx. Kinda like the cure being worse than the disease (although its hard to see what could be worse than this insidious disease). I know that some Researchers say PANS kids can tolerate long term Abx well but I can't help feel that we are "carpet bombing" the body and there will be major collateral damage...thoughts? gudiance from others who have been through this?...
  10. Wanted to ask folks on the forum a simple (?) question. If there are so many side effects of taking high doses of Abx orally (our DS gets Candida and gut issues for example) which exacerbate the symptoms - why can one not start off with IV Abx from the get-go? I appreciate the fact that it is probably more inconvenient with an IV "pick" sticking out of the arm 24X7 - but since it bypasses the gut, I am guessing Abx is absorbed better, fewer gut issues, is more effective for say, Lyme and co-infections in the blood - and our kids will likely recover faster. Am I missing something? What are the downsides? Thanks!
  11. Can someone comment on how long (hours/days) after the first dose of Abx is one likely to see herxing? Is it safe to say that if symptoms become worse say 2 weeks after start of Abx, then all other things being equal its probably not herxing but something else (say, Candida) happening?
  12. It's been a while since we posted an update. Basically we are going with an LLMD in our area based on the Advanced Labs result for Lyme. We just got results from a follow up Igenex test - which turned out to be even less definitive than the first we had done late last year. We want to make sure that Lyme is indeed the culprit before we embark on a long term use of Abx but we cant seem to find the test to confirm the Advanced Labs result. I read somewhere that the CD57 cell count was a good test? Has anyone used that? Also is there an alternative to using high doses long-term Abx against Lyme? Is there a treatment that will put less strain on our 7 year old?
  13. http://www.nytimes.com/2013/11/05/science/herbal-supplements-are-often-not-what-they-seem.html?src=me&ref=general Sharing this as many of us buy herbal supplements to support immune function / general body aspects aswe treat our loved ones....
  14. Suzan - can you also PM me the details of the LLMD in DC please? Thx!
  15. I came across this on the Web - wanted to share - its a "simplified" methylation protocol. I'm not sure who has used it with what effect - but it looks like if you have a tight budget, its a good place to start http://www.mecfsforums.com/wiki/Simplified_Methylation_Protocol,_Rich_Van_Konynenburg
  16. Thanks LLM- I should have mentioned that we indeed are treating CBS first. DS is on 70 mcg of Moly per day. We tracked his suphur levels using strips and only began Hybroxy b 12 when levels were ~ 800 - whic is why this is a little out of left field....
  17. Update on our DS...After the first few days of starting the B12 (Hydroxy) his facial tics began to increase in frequency - we've backed off for now but they are still there. I recall seeing some threads on the forums where some have had such a reaction - any theories on why this could be happening? We have not provided methylfolate - could that explain it (i.e. lack of the co-factor)?
  18. Hi - Does anyone know of a good LLMD in the DC metro area. We've heard of Nurse Practitioner KC but have got mixed reviews about her. Your help is much appreciated. P.S. Anyone heard of Ginger Savely. Please feel free to PM us with any honest feedback.
  19. Thanks all! Appreciate the advice Rowingmom- did you get Igenex testing done- not just for Lyme ( which we did ) but also for co-infections? Also, do herbs really work?- am a bit skeptical but open minded to their use...have others has luck using herbal cures for Lyme ?
  20. Update- our DS' Advanced Labs results came in - he is positive for Lyme. On one hand this is good news because we have found at least one major part of the problem. On the other hand, we have new questions such as 1. Why would the Motrin have helped DS so much? Does Lyme cause inflammation? 2. Why would the prednisone we gave him a few months ago have such a horrible reaction - made his tics go to a new worse level? What is the steroid-lyme connection? We have begun the methylation protocol but bedwetting is still there as are the tics.... also I feel that he cannot really tolerate too much aBX in the gut....are there any herbal remedies for Lyme? Wanted to get some ideas from the group as we search out an LLMD....
  21. Thanks LLM - Perque seems to be all hydrocobalamine (sub-lingual pills). These are 2000 mcg pills - I plan to start with one pill and then go up if needed - how much do you use for your children? Am still noodling on the folate - apparentlyfolate and b12 are co-factors so I dont want to provide one without enough of the other.... On a separate note, ever since we began the moly, DS has had flu-like symptoms (2 weeks now), steadliy becoming worse - he had terribly stuffed sinuses last 2 days. Not sure if this is a real cold (nobody in his school / home has it) or if its somehow related to Moly doing its stuff. We are also using the suplate strips (from Amazon) - the colors are so hard to differentiate but it looks like we are still at the 1200 level even though we have cut down on sulphur foods...hard to tell where on earth the suphur is coming from....
  22. Thanks LLM - From several thread I've read, it seems that one needs to also provide folic acid in some form alongside the B12. Is this true? If so, we will need a non-methylated form - correct (since our DS is COMT +/+) Is there a specific brand you trust / use?
  23. Hi- does anyone know where we can get hydroxyB12? We tried a bunch if stores but all have cyano or methy forms. Thanks!
  24. Very interesting thought - that Augmentin is actually working as an anti-inflammatory and not as an antibiotic. Our son has not done well on Abx - granted we have not tried very many so far, but Ibuprofen does wonders for him- sadly that is not a long-term solution...so I guess to tweak the question on this thread a little- what is causing the inflammation and is the inflammation primarily in the brain?
  25. We have our DS Augmentin and Azith for several weeks and he was making VERY slow progress- and in the middle of week 3 his tics went through the roof. I don't think it was Herxing. We put him on Diflucan and Motrin and saw huge improvement and he is back on the "baseline". I agree with LLM that some kids have gut / immune issues and Abx may not be the silver bullet. Which unfortunately begs the question - if one cannot do Abx which seems to be a core part if PANS protocols , what options does one have..?
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