

frikfrak
Members-
Posts
96 -
Joined
-
Last visited
Profile Information
-
Gender
Female
Recent Profile Visitors
2,164 profile views
frikfrak's Achievements
-
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
-
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
-
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
-
thank you, i'll add both to the mix.
-
Hi, How do you all handle the candida from antibiotics? Already giving probiotics but candida still very high on blood tests. thanks
-
appointment w/ Dr H Jyonouchi! quick question?
frikfrak replied to HopeinHIM's topic in PANS / PANDAS (Lyme included)
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 -
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
-
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
-
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
-
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
-
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.
-
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
-
PANS/LYMES knowlegable therapist for child in NJ
frikfrak replied to HopeinHIM's topic in PANS / PANDAS (Lyme included)
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 -
Naltrexon low dose for Lymes/PANS? Thoughts
frikfrak replied to HopeinHIM's topic in PANS / PANDAS (Lyme included)
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 -
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