Some of you might still remember me posting here a while back. Or maybe not.
So it has been a while since I came back because nothing seems to be working for my wife - yes, she has tried the right dose of almost all meds now, including IVs. And she has been under the supervision of one of the supposedly the best llmds in the east coast. And I (and her) have somehow resigned to non-treatment option at this point. Her NY doctor hasn't completely given up yet but there isn't any new thinking either.
The latest suggestion is to try this and he said that he only has experience with the oral form. He is still researching IV option (she has a port in still but has not used, but maintained, for a while now).
I would appreciate any input on this. I am deeply disappointed with the treatment, and desperate in seeking your advice.
Posted by sammy (Member # 13952) on :
Hi wtl, I have not tried this therapy but I do know a local doctor who prescribes it. I'll email you with more info.
Posted by Razzle (Member # 30398) on :
I think the famous Dr. K in WA uses this...perhaps the LLMD in NY can contact him?
Posted by glm1111 (Member # 16556) on :
Dr K. just announced at a recent conference that treating for PARASITES were key in getting rid of Lyme.
The parasties are harboring the bacteria, fungus, yeast, mercury and viruses. He said parasites first and Lyme is secondary. Unless an LLMD is Dr.K. educated he/she might not be aware of this.
I would seriously take this into consideration. Treating for parasites after 4 yrs of abx was the only thing that turned the corner for me.
I used antiparasitic herbs and salt/c. There is a Filarial worm co-infection that is being overlooked. Check out
This is EXACTLY what came pouring out of me after 6 mos of herbs and then salt/c. Staying on these protocols is KEY in getting rid of this.
Gael
Posted by chiquita incognita (Member # 30381) on :
In Buhner's book he writes about CD57 natural killer cells being low in those who don't respond to lyme treatment. Give them the right herbs (he specifies which ones) to support those cells and patients begin to respond to abx treatment, he writes.
Phosphatidyllcholine is triple strength lecithin. Helpful with nervous system support, the brain is more than 80% lecithin according to The Vitamin Bible of the 21st Century, Earl Mindell pharmacist/nutritionist/author writes. It's a fatty acid. I have never heard of it being given by IV but I am not an expert or a doctor.
I myself am doing incredibly well with Beyond Balance herbal product, Bar 1 for bartonella (but they make other products too for lyme and coinfections). Several people on this site have reported being quite happy with them and their progress.
Posted by wtl (Member # 19883) on :
sammy - thanks. yes, please email me the contact.
Razzle - thanks. I will mention that to the doctor in NY.
glm - yes, she had tried parasite treatment, whether that was enough or not, I can't say. But nothing seems to be working as far as I can tell.
chiquita - I tried to PM you but your box is full.
Posted by sparkle7 (Member # 10397) on :
This therapy you mentioned sounds a bit like Phospholipid Exchange Therapy. There's been some controversy around it.
I haven't tried it.
Posted by LuLuFlorida (Member # 12066) on :
Yes you can take phosphadytal choline (pc) by iv. My brother did this therapy pioneered by doctor patricia Kane, before treating his neurological lyme. I think this was a huge part in why his treatment west so sucessfully. if I could go back in time I would've done the treatment. I do the oral version of phodphalipid exchange and have seen remarkable improvement so far. cell walls are composed of phosphalipids which are 70% pc. This treatments repair cell walls. I noticed a difference after only a few days of the beginning treatment. if I am noticing such remarkable results from taking pc oraly I cannot even imagine how much the iv version would of helped me. it makes your body detox by replacing bad toxic that was good fat. feel free to send me a pm and I'll give you more information.
Posted by chaps (Member # 25286) on :
quote:Dr K. just announced at a recent conference that treating for PARASITES were key in getting rid of Lyme.
Yes, I saw that on the Lymebytes blog.
OK, so we're back to the chicken or the egg scenario.
If you're like me, you just had your amalgams out and you need to get the mercury out, parasites are supposed to hold a lot of mercury. So when you kill the parasites, you release a lot of mercury into your gut.
Oh, but wait! You have to heal the leaky gut if you're going to be able to safely get the mercury out.
Oh, but wait again! You can't heal the gut with parasites there, cuz they're the things that bore little holes in your gut.
So here we are again, asking what the heck do you do first? Posted by dogmom2 (Member # 23822) on :
I'm trying the P. choline IV next week at my llmd office. I'll let you know how it goes.
Posted by Sheryl777 (Member # 17804) on :
I know that they are using IV phosphatidyl choline for ALS.
![[confused]](graemlins/confused.gif)