from what i am reading, no one actually ever gets better, even in rocephin studies. it almost seems like a fluke if anyone is cured and doesn't have to take the rocephin for life, which i strongly doubt my doctor is willing to prescribe. i figured he may if i paid for it, so he wouldn't be investigated, but the cost of that and urso, is more than the money i have in a month. i am just wondering this however, as i am trying to think of ways.
i really can't experiment with any more expensive supplements, now, either. there has been no effect.
Posted by run4fun (Member # 10204) on :
Daniel, OH HOW I WISH I had the answer to that million dollar question. I too have the neuro type and
for me its been experimentation. I have periods of feeling pretty good and then BOOM the switch
flips and here I go again. My doc talks about the abxs that penetrate the blood brain barrier,
like Minicycoline, etc. Even still though...in my opinion...like you said...it's a fluke if you
hit the target. I'm sure you have tried all the essential fatty acids, Cholestyramine for toxins, etc???
Sure of no co infection? Its so frustrating isnt it? What are you symptoms etc?
run
Posted by AZURE WISH (Member # 804) on :
How long have you been on rocephin?
THe first time I was on it none of my symptoms improved till I hit the seventh week.
There are other abx even other IV abx that can be used for lyme.
Posted by Aniek (Member # 5374) on :
There were presentations made at the ILADS conference about patients who had significant decrease in neuro symptoms on Rocephin.
I can't tell you if they were cured. At least one was still on treatment, it had been less than a year I believe.
But one young woman was functioning after previously being institutionalized for psychosis. So yes, there is hope. You might not be 100%, but there can be signficant improvement.
Posted by secondtimearound (Member # 7249) on :
Hi,
All of my symptoms were nuero and the way I got better has been debated here extensively. I'm not looking to start it again but for me, Rife worked wonders, although it wasn't a quick fix and I did add in other things along the way.
All My Best, Scott
Posted by Lymetoo (Member # 743) on :
I was going to mention Rife as well.
Posted by Areneli (Member # 6740) on :
Term Neurolyme means nothing to me. It is clear that Bb always is present in the brain. I think this term comes from ducks who pretend they know LD i they think that using such a term adds them glory or something.
I am one of many hundred patients on this board who has improved from neurological symptoms so I don't know why author of the thread says the things she says.
I used to have overhelming fatigue - don't have it anymore. I used to have numbness of hands and legs - don't have it anymore I used to have headaches - I don't have them anymore I used to have serious memory problem - today my memory is fine.
I am still not totally well but well, I am 80% better.
I used only oral abx and strongly believe that rife doesn't work.
Posted by 5dana8 (Member # 7935) on :
I did many different abx's over the years. Rochepin is not the only abx to cross the blood brain barrior.Please read the link below:
If you have already tried most of these abx's over time and don't find any help I would look into co-infections.
I ended up doing 3 years of treatment to get my neuro issues under control with many different meds. Now I just do rife... mainly because I can't stomach meds any more. And feel that it is keeping the lyme & co's at bay.
Haven't gained any real progress yet on the rife but its only been 6 months. But I do feel its keeping me in remission for now. Knock on wood.
For rife to work you have to give it at least a year.
hope you can feel better soon
None of the above is medical advise, just my personal opinion
Posted by HaplyCarlessdave (Member # 413) on :
It IS possible to get better. I had a pretty nasty case of Lyme with Babesia and Ehrlichia. I did get, uh, ...'treated' with a couple of weak courses of doxy soon after the bite (with obvious rash); however the treatment was insufficient and I had a very serious relapse with 103 degree fever and terrible joint and muscle pain. A second weak course of doxy did hardly anything asside from causing a Herxheimer reaction. Then I couldn't get any further treatment until 6 months later- by that time I had gotten REALLY sick again, and the duck- type docs, uh, 'couldn't figure out what was wrong'... After I finally manage to find a good Lyme doc (hundreds of miles away!- 8-9 hours of bus riding when you have Lyme is NO FUN!), it took more than 2 years of heavy duty abx and atovaquone and artimesia and garlic anc grapefruitseed extract and olive leaf estract and saunas and supplements to get better, but I finally did. I'm still recovering, but I did manage to get on disability (but not for Lyme, mind you!-- what a nightmare our ..., uh, ...'system'... is!...) and medicaid (but you can't get treated for lyme on medicaid, in most cases, so I'll be SCREWED if I get bit again!....). So hang in there, keep trying things, and focus (what is left of... ...) the mind on getting better. If you do any kind of meditation or prayer, now is the time to utilize its power! You need EVERYTHING goin' for you to get the Lyme into remission. DaveS
Posted by secondtimearound (Member # 7249) on :
Areneli,
"I used only oral abx and strongly believe that rife doesn't work."
Why did you have to go there, nobody was looking for a debate, I was just stating what helped me.
I know everyone can voice their opinion and should but why here? The person was asking if anything helped with neuro lyme and for me it did.
All My Best, Scott
Posted by David95928 (Member # 3521) on :
I have had significant neuro symptoms such as memory problems,coordination problems, Difficulty with concentration, disorientation, numbness.....
Because I went undiagnosed and untreated for at least twelve years, I don't expect that I will be fully cured. However, I have gotten much better (80% - 90%) on the combination of Bicillin LA (Penicillin G Benzathine) and Biaxin (Clarithromycin).
Posted by can not remeber (Member # 6520) on :
Glad I logged on and saw this thread. First rash was 3/2004, I have been on abx since 12/2004 including 6 months of IV until present. I have been treated for Ehrichia/Babesia and Lyme.
My LLMD said I am now on a maintaince regime. There was a be a break thru week when I never think about having this disease and everything is so clear. My speech is fluid, I can carry on a conversation without feeling like a dumb blonde because I do not know what streets I live between and I really laugh... And then approx. a week later I can not pronounce words I used to be able to, I do the 'um, um, um....in the middle of sentences, memory gets worse, trying to follow/participate in a conversation is disheartening (sp).
I asked the doctor, why the maintance abx?? Is this as good as it gets?? They suggested I consider a pill that people take to help with memory (those with dementia/alz) - I did not want to. I need to gauge my treatment success, with that pill I would not be able to.
Is this it? The maintance abx tells me I am nearing the end of treatment. Is this as good as it gets? What is remission? And why am I so sad? I just want to be free to go Do you know what I mean?
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
...) the mind on getting better. If you do any kind of meditation or prayer, now is the time to utilize its power! You need EVERYTHING goin' for you to get the Lyme into remission.