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Everything posted by Kimflow

  1. Thank you all for your responses. I think I am seeing a pattern that it takes months of treatment before you see gains when it comes to Lyme. I have been doing epsoms salts, charcoal, and liver life. We have only had that one really bad big toe crisis and after talking to my husband, I wonder if last night foot/leg issue wasn't more related to his OCD. Long story but I am pretty sure he has strep throat again which alwyas causes a flare in this type of ocd. I added back in his zithromax whcih was part of the plan anyhow. Besides the verbal triggers that flare his OCD/anxiety and the
  2. Hi, We recently added Alinia and I think we are on day 6. He woke at 5 am crying out complaining of foot/leg pain. Prior to this 2 months ago he had a extremely painful big toe joint crisis. That was much more painful to him and lasted longer and only involved his big toe joint on the bottom of his foot. For this toe joint pain, we had been on Rifampin for several weeks, and then had started augmentin for 2 days. I have two questions: Doea Alnia kill off only Bartonella? Does it kill of Babesia and Lyme too. And for those of you have had herx experiences like this, s
  3. Susan, Thanks for your reply. I am seeing several great practitioners;.....pandas doc,LLMD, neurologist, soon immunologist. However, 7 years after autism, undiagnosed PANS for most of those 7 years most probably but didn't know it....we have had 5 months of PANDAS/Syndehams chorea and then Lyme and who knows what else piled on top.....we are making little progress. I am grateful for every little bit but I just felt like I needed to add on someone who could help me add Lyme herbs to the antibiotics. The practitioner who will do herbs also uses a zyto and I was curious to know what e
  4. Has anyone used the zyto as adjuntive therapy or to guide therapy? Would you share your thoughts on how it worked for your situation? Thanks.
  5. IN early days of autism when he was very sick, my son too was extremely bothered by crying babies. Covering of ears for other noises too but particularly upset by crying babies. This would come and go and I always associated it with inflamation/detox. Once we found something to halt inflammation, this symptom improved. So I would wonder if the toxins liberated from lyme/bartonella treatment for 3 months have increased inflammation? Kind of like my friend who started eating healthy and juicing and he caused a detox crisis in himself becoming very sick. I like the items suggeted
  6. Posted this also on PANDAS board. We see doc. on Monday. One of the things I will ask about is LDN. Would you all share your experiences with LDN with regard to PANDAS/Lyme? Do you find the pill or cream better for your situation and why? At what time do you give and what dose did you start at and end at? Were there any side effects initially? What were your positives? Thanks.
  7. We see doc. on Monday. One of the things I will ask about is LDN. Would you all share your experiences with LDN with regard to PANDAS/LYME? Do you find the pill or cream better for your situation and why? At what time do you give and what dose did you start at and end at? Were there any side effects initially? What were your positives? Thanks.
  8. Mary, I get goosebumps reading your post. Our world too "refell" apart in March of this year. It first fell apart when he was diagnosed with autism. Your analogy of this being a rollercoaster...you hit the nail on the head. Just prepare yourself for it as this will be the way it is. Just accept that when you are in the valley, you will go up again and when you are on the peak, enjoy it as you may very well see another valley. Now, when I was in your position with pediatricians who didn't know how to treat PANDAS, here is what I did: Read this forum every day to begin to e
  9. IgG **34 IND **41 ++ IgM 18 ++ **39 IND **41 + These results are labled as negative per both igenex and cdc guidelines. Igenex suggests retesting several weeks. Is it labeled negative because of the IND on the IgM 39. the way I read it, you only have to have 2 lyme specific bands on the IgM testing to be positive. And also to me, IND still means that the lyme specific bands were present as far as I am concernred. finally, I read that you have to keep retesting and then eventually more bands will continue to appear. Does that happen even if you are taking antibiotics?
  10. Hi, How could one have positives in both IgG and IgM categories. IgG represents older infection and IgM represents recent infection. This confuses me but I am sure many of you have already asked this question of your docs. thanks.
  11. Hi, I read this thread on a yahoo group. The poster said that many do not know that some PANDAS kids do not tolerate Lactobacillus rhamnosus. Isn't this Culturelle? So we have been using it 1-2 times a day to avoid clostridia from the antibiotics. Have any of you found that your children do not tolerate the Culturelle. I know that some kids do not tolerate the Sach. Boulardii. If you have, what probiotics do you use? None. Thanks.
  12. Hi, After PANDAS diagnosis with multiple antibiotics working for 7 days and then failing, labcorp positive for 41 and 66, CD 57 of 24, igenex pending, tonsillectomy causing another bad flare, IVIG #1 9 day ago, PANDAS still here. Now ready to go back and focus on Lyme treatment as it seems that Lyme may be the root cause of much of the issues....need to figure out what drug combination is going to work. All the "cillins" in the beginning showed initial improvement for 7 days so we know that the "cillins" work to a degree. Editing to add in the Keflex also worked for 7 days so I believ
  13. My thoughts exactly....you CAN DO THIS!. Having felt overwhelmed myself many times, we are sometimes always able to rise to the next high alert. Hang in there.
  14. After multiple kinds of antibiotics, some improvement which I am grateful for but still not enough to make life easier, recommended tonsillectomy that caused massive flare we are still in, more antibiotics, IVIG a week ago, we are not yet seeing improvements in chorea, anxiety,ocd, etc. I am trying to remain calm. :-) IN the meantime, I think now is the time to try the pecid as elelvated histamines have not been addressed yet and I would hope that lowering histamines would help with anxiety. I plan to give at bedtime to avoid digestion issues. Was thinking I might start at half dose firs
  15. mdmom, First, sorry that the insurance company is making it more difficult. I am not sure it would be of any extra help to you, but if you yahoo or google search "IVIG, codes, Dr. B" or similar searches, you will find that alot of specific ACN latitude posts actually come up with information regarding codes used, policies, IVIG,etc. How do I know? I just printed a few out the other day. I do it this way as I have not yet mastered using this forum's search option. I just went and looked at my papers....the one thread with diagnosis codes was under poster GraceUnderPressure. June
  16. I too have heard that Greenstone may not be as effective and to avoid it. Also, zithromax treats intracellular strep. I do not know what kind of strep amoxicillin treats. Hopefully others will respond.
  17. We had the first IVIG yesterday. Now I feel like : NOW WHAT DO I DO? Just sit and wait........I am so used to the past several months beging the amazing race to find help, that now to sit still and wait to see if it helps feels strange. We continue on two antibiotics, two antifungals. Waiting on igenex results in about 14 days or less. How long did it take to get your igenex results back? Do I pursue better methylation? Do I pursue other options like l tryptophan or inositol? I won't know then if it was the IVIG that helped or the supplements???? Thanks for your thoughts
  18. well, this makes me nervous....as ours is 1 gm per kilogram and we have pandas/syndehams chorea.
  19. For those of you who have had IVIG, what was the dose/kg administered.
  20. Has anyone else on this forum received repeated IVIG through United Health Care??? If so, what was the diagnosis?
  21. Hugs2day, Maybe there will be a silver lining in this cloud. First, I agree with Mayzoo.....see if you can find something that will cover the azithromycin (probably not) ....or maybe something more successful will be give the liquid zith in a syringe and offer a bribe syringe to chase it with ....something really tasty to him. The silver lining.....alot of the liquid drugs have aspartame in them. Maybe his body is telling him that it makes him feel sick now. So if all else fails, he can learn to swallow pills. I started with a small tiny pill in thin liquid pureed food and grad
  22. Nancy, I am so sorry that your daughter and family are experiencing this. I pray that it all gets worked out quickly. It is a horrible feeling to feel powerless to help our children when they are sick. K
  23. Hi, I was wondering if any of you have been advised to stop certain autoimmune therapies when starting to receive IVIG? For example, Low Dose Naltrexone, Porcine Whipworm (TSO), etc? If they have told you to stop, would you share the reason? Thanks.
  24. ko's mom, Having just come through a tonsillectomy/adenoidectomy that was recommended.....please be aware that it can cause a flare. He did receive IV antibiotics during procedure but it did not seem to help as day 4 after tonsillectomy, we started a flare that is still ongoing and moderate..chorea exacerbated, anxiety, etc. etc. still 5 weeks postop. IVIG is scheduled so I am praying so much that will help. I assume they will culture his tonsils with Minnesota doc. Are you seeing Dr. H at Georgetown? Possibly you could ask him about benefit of infusing IV antibiotics as other p
  25. Bigmighty, Thanks for the water reminder. Any other tips......Ibuprofen and maybe Benadryl to prevent vomiting. Don't worry...this weekend, I will write my list of things to remember to do...much like I did for his tonsillectomy. The list keeps me on track during what could be stressful time and also it makes me feel like I have some control :-). I can't say it enough times....the tonsillectomy really messed us up....(despite IV antibiotics intraop and also postop) .....maybe in the long run, it will have helped as there was still bunches of alpha strep and many other bacteria
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