Jump to content
ACN Latitudes Forums

frikfrak

Members
  • Content Count

    96
  • Joined

  • Last visited

Everything posted by frikfrak

  1. Hi, Has anyone used any of the Bioray products? They have several different products for parasites and probiotic and liver help. Currently going to try Cytoflora, supposed to be great for speech. My DS 26 doesn't really talk so thought I would try it. Also the product for helping with the liver is LiverLife, supposed to clean out toxins. http://www.bioray.com/detox/ Seems these products are mostly used for autism children but thought would help anyone with similar issues. I am also giving Buhner herbs for babesia, JP and Sida Acuta. Anyone know if ok to give herbs with bioray? thanks for any help frikfrak
  2. Hi, My DS (26) had 5 treatments subQ, he is mentally disabled due to lyme / babesia and who knows what else. Been treating for 7 years but no better. The subQ did nothing, we were told by his immunologist that subQ also was better because less side effects but it didn't work. frikfrak
  3. Hi, My DS (26) is currently doing low dose IVIG Sub Q....I wanted HD but doc (Dr. J) is doing it this way because thinks its immune system which is low. Won't do IVIG intravenous because says side effects are greater in the brain this way. Also thinks if LD IVIG works then it'll fix other issues; confused, doesn't really speak, no memory and so on. Son has been mentally disabled for years. Diagnosed with lyme, babesia and possible bart several years ago and treated with several llmds including 3 years with Dr. H. Also was with PANDAS doctor for 2 years. Son never really improved. Basically just sits all day, can't leave alone. Anyway, doc says won't really know if this is helping or not for at least 3 or 4 months (3 or 4 treatments). I'm not giving anything else but Japanese Knotweed. Have given him MANY supplements for years and nothing made a difference so not giving anymore. We do still see LLMD but honestly I think she is stumped too. His ASO is very high (700's) but doc isn't too concerned. She doesn't believe in lyme. OCD seems to be getting alittle worse, it isn't bad just little things. Is it OK to give japanese knotweed with IViG considering both help the immune system? Just want to make sure I'm not overloading him so to speak. I did tell the doc I was giving him this and she said OK? thanks for any insite
  4. Hi, How do you all handle the candida from antibiotics? Already giving probiotics but candida still very high on blood tests. thanks
  5. Hi, Did you ever see this doc? Did DS do OK with the vaccine? Seeing same doc soon and wondering what to expect. Any info is appreciated. thanks
  6. Hi, Does anyone know if its OK to give the Pneumovax vaccine? Both LLMD and immunologist wants my DS (24) to get this. LLMD because wants him to be protected and immunologist because we're looking into IVIG and wants to see if he responds to this.This immunologist does know about PANDAS, heard she is very well versed in it which is why we went to her. Right now he qualify's for IVIG because of his numbers. Saw neurologist last year who also wanted to do IVIG and didn't mention this, was just going to do IVIG but we weren't convinced then or ready to do it. Running out of options and hoping this will help now. Treated for over 5 years for lyme / babesia / parasites. Seeing top LLMD for over 2 years. Latest treatment was for bartonella....Rifampin paired with others since Dec. and no real improvement, so LLMD took him off everything and is currently on Difflucan daily for possible yeast. I'm thinking wasn't on the bart treatment long enough because bart streaks did appear about 3 months into treatment but now have disappeared off treatment. Anyway....any thoughts on the vaccine? thanks frikfrak
  7. Hi, My DS (24) still not getting better after 5+ years. Too long of a story to go into it but have tried everything. LLMD and Pandas doc think its time to look into IVIG. Went to Neuro and he agreed to do it. I made appt. with Dr. B in CT just for another opinion. They said will have to test whole family with test, not covered by insurance. Could be up to 1400 per person in household. Is this normal? Can hardly afford test and appt. for DS no less rest of family. Is this a deal breaker if we won't do it? Has anyone else had to do this with this doc? Should I even bother to go see him? Just thought I should see an immunologist. Any info would be greatly appreciated. frikfrak
  8. Hi, Just a quick note....We did use Dr. Zhangs artemisinin in the past, couple of years ago. DS's numbers did go down to normal but didn't really "act" better but doc says ok to take again since he discontinued malarone and now is on nothing for babesia even though his numbers are still at the highest. Basically doc moving on from babesia and focusing on possible bart. Will definitely post if any improvements from this or the herbs he's now on. thanks
  9. Hi, We just finished a bottle of Researched Nutritionals Arteminisin and have to order more but been reading up on Hopkinton Arteminisin. Would definitely like to try this. Does anyone have any info on it....helping? where to purchase? how much to take? thanks for any help frikfrak
  10. Hi rowingmom, thanks, that is the one I bought. I see that you take your DE with probiotics, the DE won't take away from them? We dose: meds at 7 am leaves for the day to a day center. they give supps at 11 am and then probiotics at 1 pm comes home at 3:30 will dose zeolite then meds again at 6 pm supps again at 7:30 magnesium for sleep at 9 pm probiotics again at 10 then bed So therefore I figure I could only get it in once a day...1 scoop thank you frifrak oh..called for theHouttuynia from 1st Chinese herbs but they are all out...is there another brand I could buy...powder or capsules.
  11. Hi, Can anyone help with how to take Zeolite. I purchased the powder form and it states "Does not mix well in water" They suggest putting it in yogurt but we are dairy free. Can I mix in applesauce? or something else. My DS is great with taking anything. I'm sure if I did put in water he would just down it, how much water, full glass? Also do you detox everyday or maybe just on weekends? I'm assuming you need a 4 hour window just like activated charcoal so at best I can only do this once a day.....good enough? For how long, weeks, months? thanks for any help frifrak
  12. Hi hopeinhim, We too live in central NJ....we've (my DS 24) been seeing Dr. Robert Bransfield in Red Bank for close to five years. I'm not sure if he sees children but maybe you could call and ask for a recommendation if needed. frikfrak
  13. Hi, My DS (24) took it for approximately 2+ years and never noticed a thing. Just recently stopped a couple of months ago and didn't notice any change. frikfrak
  14. Hi, Can someone recommend what Vitamin C to take / how much. DS (24) already has loose bowels but tested zero on OAT test. thanks for any help frikfrak
  15. Hi, Glad to hear things are going well. Our doc also wants us to do this for our DS 24. Still haven't decided what to do yet. We also have been approved for 1 IVIG so far....thinking of going with the IVIG because I too can not get over the ick factor and we have treated for parasites several times. Heard this was the poor man's IVIG but if its life-long then how is that inexpensive. Wouldn't IVIG be better if offered? Doesn't both do the same thing? frikfrak
  16. Hi, Has anyone used Metabolic Maintenance REM Maintenance for sleep? Was just recommended this by our doc. Does it work? Hate to spend more money if it doesn't work. My DS (24) will only sleep if given seroquel. thanks frikfrak
  17. Hi, Our doc has my DS (24) on GI Microb-X 1 capsule 2x daily and Candicid Forte 1 capsule 2x daily. Also on A-FNG. Been on GI Microb-X for a couple of months now and Candicid Forte just for about 2 weeks. Not really sure if helping yet....I will say he's become silly, actually playing with us...poking us to get us to laugh and much more touchy, was never like that before. Is this a positive thing, not sure yet? Die-off, maybe? Good Luck frikfrak
  18. Hi, thank you for replying. For the CALM, do you just buy the magnesium one or the one with Magnesium and Calcium? Thank you, I will get it and give it a try. frikfrak
  19. Hi, I know that alot of people use magnesium for their children to help them sleep. My DS (24) sleep has gotten worse, to the point that only seroquel works. I would prefer not to give this and want to try magnesium. My question: His magnesium levels are fine so is it still ok to give magnesium. Also he has constant diarrhea which we are trying to fix so I read to give Magnesium Glynicate because it doesn't create diarrhea, yes? There is also a newer form out now...Magnesium Threonate, supposedly gets into the brain better, has anyone used this? Also what dosage....500 mg. before bed? thanks for any help frifrak
  20. Hi, This was prescribed to us for sleep...worked too well. Currently not using.
  21. Hi, He was on Flagyl but after 5 days his liver levels went very high so we had to stop the flagyl.
  22. Hi, sf-mom....he hasn't done the Shoemaker Panel and Real Time Labs test but did the EIA & Immunoglobulins report his numbers were: IgG score......Class Aspergillus fumigatus....3.74.........II Range 3.00 - 10.00 Candida albicans..........101.00.....IV Range 2.50-12.50 Alternaria tenuis............31.84......IV Range 2.50-12.50 Helminthosporium.........9.47..........II Range 0.15-0.50 Was told these are markers of mold....doc suggested mold drops/allergy drops to help him desensitize him to mold and the other doc gave us the A-FNG from BW. Am going to try the A-FNG 1st because I'm not comfortable introducing something else his body has to fight off (mold drops). cara615....pm'd you thanks
  23. Hi, Hoping someone can shed some light on this. Received back the OAT test for my DS (24); many things out of whack but the one thing that got me was the Intestinal microbial overgrowth, its 3894? range is up to 219.9. So he has yeast yes? But how do you fight yeast while still on abx? The doc didn't seem too concerned, just said we are already doing what we can; using GI-Microbe X tabs, 1-2x day and nystatin, 4-2x day. I'm trying to keep him off of sugar and carbs...hard though. My other doc said to add in Candicid Forte, 1-2x day. Also was using Charcoal pills but doc had me switch to detox 2, said he liked it better. also gave me A-FNG to start using. Also giving probiotics; high bifido ones because he has diarrhea for like the last 2 months. Have Custom Probiotics D-lactacte free powder but think the high bifido is better, at least for now. Any suggestions? thanks frikfrak
  24. Hi, I was wondering the same thing. Is it OK to do steroids or IVIG if have lyme? What if your just not sure if lyme or co-infections still exists? This all started for my DS (24) because of lyme...all bands positive and RMSF. Two years after onset babesia now positive as well. Fast forward to now: only 2 bands positive for lyme, babesia still high (1024) normal is 256. The more test we do for lyme the more different results we get. Advanced labs says no lyme, Igenix says yes. Neurologists wants to do IVIG...just not sure if we should....although I am seriously considering it....NOTHING as worked thus far. Also what can happen is lyme DOES exists...will he get worse? frikfrak
×
×
  • Create New...