I have been fighting lyme for five years with orals only..they are not working..it is taking too long and the herxing is really bad with no real improvment..i feel that iv is the way to go..I cant suffer like this!!it is really bad..I need to clear this infection from the brain..what is everyones thoughts..orals take to long and make the person really suffer! I tried oil of oregano and it hit it and got some change in symptoms.. so I know the antibiotics in oral form are not cutting it for severe neuro lyme. eyesight,brain fog,memmory are not any better after all these years..I need to think to work! there is alot on the line..
Posted by Starfall1969 (Member # 17353) on :
I'm kind of new at the Lyme thing, so I'm not much help.
But I would just ask if you've addressed this with your LLMD? What are his/her thoughts on it?
If he/she isn't open to altering your treatment, then maybe you need to seek a second opinion?
Posted by Lymetoo (Member # 743) on :
Polar .. This is just a suggestion. Since oil of oregano helped, have you tried an all out assault on yeast? 5 yrs of abx will create huge yeast problems in almost anyone.
Diet is key, plus the best probiotics and yeast killers available.
IV may create its own set of new problems, but I hear your pain and misery.
Posted by Tincup (Member # 5829) on :
Well Star and Tutu already suggested what I was gonna say... so there you have it.
I do hope you are feeling better soon!
I really do.
Posted by Geneal (Member # 10375) on :
Maybe try the diflucan protocol for 60 days.
I know that this protocol helped clear my brain fog issues
As well as speech and memory issues.
However, it wasn't until the 3rd run of it that I really saw improvement.
Plus, it will get the yeastie beasties.
Hugs,
Geneal
Posted by glm1111 (Member # 16556) on :
I have had great succes with the salt/c protocol. (sea salt) It has saved my life.
Parasites and worms play a MAJOR part in Lyme disease.
Gael
Posted by Brainspud (Member # 16428) on :
Are your ABX breaking the blood brain barrier? Have you considered coinfections? Yeasts? Molds? A different doc?
Posted by lymeloco (Member # 7192) on :
I.V. helps, but is not a cure all! I've been on it three or four times, only to relapse again.
Check your thyroid and your vitamin D levels. Please remember, although lyme may cause symptoms...they also need to be treated.
Good Luck!
Posted by lymeloco (Member # 7192) on :
Don't forget where ABX comes from...mold!
Posted by lymeloco (Member # 7192) on :
Some doctors don't believe in systemic mold, so what does that say to us? We're crazy??
Posted by lymeloco (Member # 7192) on :
Some doctors don't believe in systemic mold/yeast, so what does that say to us? We're crazy??
Posted by lymeloco (Member # 7192) on :
Some doctors don't believe in systemic mold/yeast, so what does that say to us? We're crazy??
Posted by abigail (Member # 14936) on :
I am on IM cefotaxime. It has done wonders neurologically. Hope I don't relapse...
Posted by polar blast (Member # 9142) on :
I took oil of oregano and herxed so hard!!I think that I am filled with yeast as I get this smell in my nose of urine..oil of oregano knocked it out plus it hit things that my regular antibiotics did not..ill take the diflucan..
Posted by Pinelady (Member # 18524) on :
Many people do not understand that an overgrowth of
yeast can kill you.
Consider this-man in hosp for hep.B for a week,
died on 7th day from yeast clotting his system.
There was nothing they could do,
but something they should have been doing.
Preventing this from happening.
Posted by nenet (Member # 13174) on :
Wow, looks like the forum went on the fritz all of a sudden, all these double and triple posts.
I may be mistaken, but doesn't oil of oregano also have antiviral and general antimicrobial effects? So it may be hitting yeast, or viruses, mycoplasmas, protozoa, or some other bacterial infection not affected by your previous antibiotics.
Either you didn't mention it or I missed it, but did you say whether you have been fully evaluated for coinfections? If it was done a long time ago, or not at all, it would seem to be the best place to start looking.
Many many people have complained of intractable Lyme/other symptoms when they had a coinfection or 3 that were missed/not properly treated for. Once they treated those coinfections they broke through the wall and started seeing improvement.
Yeast and other opportunistic infections can be to blame as well, but if you never had any (or much) response to your antibiotics, I would definitely start looking for coinfections and getting clinical (NOT test-based) diagnoses.
Remember that Tick-Borne coinfections all have poor testing, and lean heavily towards false negatives. You need a very good LLMD to evaluate you for all of these and yeast and opportunistic virsus etc.
Posted by seibertneurolyme (Member # 6416) on :
Polar,
I know in the past you have had many of the same neuro symptoms as my hubby. He has also been in treatment for about 5 years. Remember that you had a positive F lab blood smear and also very strong reaction to artemesinin.
If you have not read it you need to see the following link about the mystery protozoa. This is what Fry used to call bartonella or haemobartonella or mycoplasma. All look alike to the eye under a microscope. It is possible to have either 1 or all 3 of these coinfections.
Hubby also had a positive smear from Clongen labs last November. They also thought it was a bacteria at first like F lab used to think. But now they also think it is an unidentified blood borne protozoa something like babesia or malaria but not either of those.
This is not medical advice, just my opinion based on hubby's experiences.
![[Big Grin]](biggrin.gif)