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Everything posted by frikfrak

  1. Hi, Great News...it just so happens I have an appt. in Jan. for my DS with Dr. C....now I'm really excited.
  2. hi, I too am on the "list". Is there another doc to see, instead of Dr. B?
  3. Hi, thank you...FYI: he has been taking nystatin for years I think your right, I'm going to wait on the test and discuss on next appt.
  4. Hi, Been reading posts about mold and someone mentioned even if the test comes back normal you may still have mold. We had our house tested and everything came back fine. Can my DS23 still have mold? Our LLMD gave us a test to do: Total Mycotoxin Panel from Realtime Labs. its expensive and I'm not sure if insurance will cover it. Does anyone know if this test is worth it? or has done it? thanks
  5. Hi, My DS tested positive for Candida glabrata...doc said difflucan doesn't hit that very well (did 30 days of it). According to test, GSE, Berberine, Uva Ursi and Plant Tannins hit it...haven't used any of these so can't tell you how it went. Doc also prescribed Bactrim DS, said it hits it very well. Haven't started it yet. Waiting to do bloodwork in 3 wks first. Also said to use Intestinal Support drink, 1 scoop 2x day...ramp up slow starting with 1/4 scoop for gut. good luck
  6. They said having a hard time getting it covered by insurance.
  7. Hi, Called Dr. B but they said they do not take my insurance and even if I come in they are not doing IVIG right now and if they did my ins. wouldn't pay for it. They said they will put me on a waiting list if I want, supposed to call back. Can someone please give me another immunologists or another doc that does IVIG. LLMD thinks IVIG would be good for my DS. Nothing else has worked. thanks His Mom
  8. Hi, My DS (23) has been on it for a year, 4.5 mg., haven't seen any improvements. Sorry. But I have heard where people find it helpful, just not us.
  9. LLM - was your son also taking other supplements when you started Core? namely zinc already? How did you know what the correct dose was? Did your LLMD suggest Core? At what dosage to start? Sorry for all the questions. Just went to an ART doc who said my son tested positive for KPU but didn't put us on anything for it. He only suggested a detox protocol. Thinking of trying this for my DS. Rowingmom - You stated you always used Japanese Knotweed, do you think this helped? I recently started my DS on it as well....up to 2 pills 3x a day, we use the pills from Green Drago
  10. Hi, Dr. Horowitz, an LLMD NY doc will be on the show Oct. 9. http://katiecouric.com/2013/10/09/daniel-radcliffe-lyme-disease/
  11. Just an FYI Wednesday October. 9, Kati Couric will have a show about lyme disease. Dr. H will be on it
  12. Hi, I am actually going to buy this also: (Enzymedica, ViraStop, Immune Function) along with Enzymedica Candidase...I believe my DS has a yeast infection, possibly for a couple of years even though the LLMD doesn't think so only because no white on tongue. The reviews look promising, so I too, would like to know if anyone has ever used this. Sorry, didn't mean to hijack thread thanks
  13. thank you....yes, i'm going to switch probiotics and see if that makes a difference....I will buy both and see how it goes.
  14. Hi, I'm now convinced my DS (23) constant loud laughing is caused by yeast and want to do everything possible to get rid of it but being on abx its nearly impossible. I've been researching and have found other Mom's talking about this with their kids, albeit, much younger, on different forums: one being an autism site. I read on this site not to give any probiotic containing Streptococcus? I have been giving my DS (23) VSL#3, 2 packets daily (900 total) that does contains this and his strep titers are very high even though no symptoms so I've been looking for something else tha
  15. Hi RowingMom, thanks...yes, the pulsing does seem to work better, maybe we'll go down to 4 on/3 off and see if that is even better. I had already bought the Green Botanicals Japanese Knotweed in capsules...I believe the dosage is 3 pills/3x day...is that enough you think? Those are for inflammation, yes? Read it was really good for the brain.
  16. Hi, He was on IV rocephin back in 2010 but his WBC was too low so had to go off. Then a year later was put on IV Doxy for 9 months but other than that all orals. I gave him 3 advils a couple of hours ago and I can't believe it...he's quiet, no laughing. I'll give it to him tomorrow 3 - 3x day and see how he is. I do have Japanese Knotweed that I 've been wanting to try so I'm going to add it to his protocol and see what happens. Just came back from appt. with LLMD and will keep on current abx: malarone/art for Babesia (numbers coming down nicely - finally). But he also started
  17. Hi, D'sMom: thanks...I did give him 2 once and it did nothing, I'm going to try that dose and see if it helps for a couple of days.
  18. Hi, DeDee: I did buy the book, haven't read it yet though, will start....did any of the herbals help? If so, which ones? thanks CobbieMommy: I thought you can't give steroids if you have lyme and coinfections? D'sMom: ibuprofen. Dr. T Rx'd 3 doses of 750 mg a day....that's 3 Advils 3x day, yes? Instructions say no more then 6 a day. Does he have lyme or coinfections? thank you all for your help His Mom
  19. Hi, thanks.....funny you mention itching...my DS always itches his nose, constantly. We were thinking possible yeast but he just finished a 10 day difflucan a couple of weeks ago "just in case" he has yeast. Not sure if he does, can't ask him anything. I'll try the ibuprofen (Advil, yes). See how he does., thanks. Have your tried seroquel? I give my DS 75-100 mg. on bad days. Does seem to help some.
  20. Hi, thank you for the suggestion. Just to clarify...my DS is no longer angry, stopped that within 6 months...quite the opposite...he is very calm, nice, polite - easy to be with. Doesn't do any of the OCD or angry stuff anymore, which is why not sure if its PANDAS or just the lyme/babesia/bart/myco stuff. Can laughing be a tic? Was just wondering if there was something I could give him for the laughing. thank you
  21. Hi all, Just hoping for some suggestions here: Recap: DS (23) diagnosed Dec. 09 with lyme, all bands positive and RMSF (was regular kid w/job/car/friends)....starting treating with 1st LLMD....DS very angry/let hair and beard grow (looked like mountain man), started listening to RAP music (which he never liked) all within 1st 6 months....started see Dr. B in Red Bank also. then switched LLMDs, all those symptoms went away and then starting being paranoid, calling police to confess car accident that he had had year earlier, washing hands, going in bathroom for long periods of time..
  22. Hi My DS (23) didn't sleep for a few nights, I think because started new ABX...Rifampin/Minocycline/Tindamax...what have you tried to give her? I finally gave my son a couple of things and it worked...slept last 3 nights...also decided to stop the ABX, just gave the others he was on (malarone/arteminisia) and stop all supps just for the weekend to give him a break and he now slept last 3 nights. Going to start back up everything on Monday.
  23. whoops, sorry, didn't answer your question. A few months ago I had strep so I had him tested just to be safe, again he can't/doesn't tell us when anything is wrong. We never know if something is hurting him or not. He did not have symptoms but I told my doc to swab him just in case. The swab came back negative but his ASO titers were very high so she put him on Augmentin XR (?) for 30 days, didn't help. That's when I searched for Strep/Lyme and found the PANDAS forum.
  24. Hi, thank you and yes, he was normal until 3 1/2 years ago (Dec. 09) when this whole nightmare started. Started acting strange literally overnight (first didn't sleep for 3 days and then wouldn't get out of bed for 3 days and actually wet the bed...we were completely stunned, he was 19 at that time)...brought to regular doc who first said he's depressed and gave Paxil (we knew that we BS but figured give it a try for a bit), after a couple of weeks we brought him back and said to test for everything and blood work came back positive for lyme, all bands positive and rocky mountain spott
  25. Hi, Just received blood test back... ASO AB 375...3 months ago it was 368 DNASE-B AB 189...normal Streptozyme Screen....Positive A We've been treating lyme for 2 years then found Babesia, treating this for 1 year when I thought possibly he could also have PANDAS..only came across the ASO AB test after I had him tested because I had strep. My DS (23) doesn't speak, mentally disabled by all this, was "normal" before this all started. His babesia level is now 1:64, 3 months ago it as 1:1024 (normal is under 1:256) so I guess were doing much better as far as that's concerne
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