I have been on abx treatment now for 15 months or so and have seen some good progress. The big thing for me was the level of my C-Reactive Protein, which indicates the level of inflammation. It has now gone down to a normal level, which my LLMD thought 'weird low - but great'.
I just started pulsing with tetracycline. After continuous abx for 14 months I first stopped everything for 3 weeks to allow the cysts to come out and it resulted in a nice herx etc.
Anyway, my feeling is that I have a good chance to get to a point where I can control the Lyme in the rest of my body. Looking forward at this point, I am more concerned about the Lyme in my brain. A brain MRI 9 months ago did not show lesions or something, but there is a good chance they're in the brain. I also understand that most abx do not cross the blood brain barrier very well so treatment there is difficult.
So, what does the future hold for me? Will it slowly take over my brain - developing the 'brain fog' etc? What abx are best for the brain? I have been on: Biaxin/Plaquenil, Mepron/Zithromax, Mepron/Ketek, Bicillin and now Tetracycline. I have heard that IV abx are the best for the brain, but I am weary to suggest Rocephin. Comments would be most welcome.
Tim
Posts: 147 | From Westborough, MA, USA | Registered: Feb 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Tim,
What makes you think there is a good chance it is in the brain? Are there particularly symptoms?
Many people never have cognitive symptoms. I've been carrying the buggers around for 18 years. I have some neurological symptoms - but they are related to nerves and motor function. My LLMD suspects it's spinal and not brain. Still waiting for MRI results.
But I've never had brain fog or other cognitive symptoms. That's the reason ducks kept telling me I couldn't have Lyme.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
actually, I don't have any cognative symptoms, just the inflammation (chest, knee) and neurological symptoms. But with my luck (ha!) I thought it better to find out about the brain thing before it hits me. I do have a pretty consistent head ache in the back of my head, but that might be the central nervous sytem aw well my dock says.
Posts: 147 | From Westborough, MA, USA | Registered: Feb 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Morning Tim-
You have made good progress on great drug combos. I would not think you would develope neuro lyme on the tetra.
My neuro lyme happened with low dose interrrmitant treatment. Iv Rocephin didn't help me. Since then I have been on tetra long term and have made the best progress. Our llmd feels that eventually tetra will get the lurking and cyst keets and the pulsing will help.
Our llmd doesn't feel rocephin crosses the brain/blood barrier well and other abx has to be added to facilitate that.
It's early and I haven't had coffee, so I hope I'm clear.
posted
I have been told by my llmd that doxycycline, ceftin, and omnicef cross the brain barrier. There may be otheres too, those are just the ones he has used for me.
He has had me on ceftin for 20 months, with zithro. He has just switched me to ketek and omnicef and told me that omnicef penetrates into the brain better than ceftin. Apparently zithro and ketek do not make the crossing. Good luck!
Posts: 20 | From Santa Barbara, CA | Registered: Jun 2004
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posted
I've been off ABX for 3 years and am having symptoms again, some of which are neuro. (anxiety and OCD) Went to see LLMD and he feels Tetra is one of the best for the brain barrier. I asked him if he thought I would have to go on IV Roc. and he said no. He felt that Tetra and others, (cyst poppers?), would be better. I think this is a change in opinion from 3 years ago. I guess IV R. is not the ultimate treatment for everyone. That's good news, I think. In my case, the brain fog was brought on by being treated with the wrong ABX which were prescribed by a great doctor but he just wasn't familiar enough with Lyme. That's when I went to LLMD. After other ABX, that problem resolved.
Posts: 24 | From CT | Registered: Jan 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
As far as I know Bb is in the brain in any form of the disease. Lack of neurological symptoms is good but doesn't not exlude presence of bacteria in the nerwous system.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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