posted
As many of you probably know, due to all my posts, I have been on doxy for about 4wks at 200mg a day. Ive been reading, reading and reading. It doesnt seem like my dosage is enough to cross the BBB (brain barrier) My brain fog is pretty bad too. (I tried to return some movies and got all the way to the video rental store and realized I didnt have them.)Its gonna be another month before I get to see this LLMD for the first time but could my vision problems and brain fog get worse since Im not being properly treated?? I tried to work a higher dosage out my family doctor and she didnt even want to hear it. She was even skeptical about giving me another 2 weeks on the Doxy. Any help is appreciated- Sometimes venting helps tremendously. *this is only disease I know that someone could ask you "do you feel any better" and you could respond with " I dont know "
Posts: 232 | From kennett square, PA USA | Registered: Aug 2004
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Omg, this is weird, but that sounds just like my experience with my PCP. And you know what? My PCP is so gone now! Instead I'm seeing an LLMD who's willing to treat me proberly in sensible incremental steps with significantly increased dozages and treatment periods (4 weeks at a time).
Of course I don't know your entire story, or even what your symptoms are. But it sure sounds like you should find yourself an LLMD. Keep in mind I'm not a doc and don't even know much about Lyme compared to the rest of the crowd here. So take my advice with a grain of salt.
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dullchime, I was on doxy myself for a little over a month, and it didnt help me at all. If it was me though, ide take it till i got to a llmd for different meds. One thing i noticed on the poll about meds was that doxy alone rarely ever seemed to help much, but combos like..Zithro/Flagyl...Flagyl/Amoxi....Flagyl/Doxy...Biaxin/Amoxi...Seemed to work best...As far as the brainfog n vision, well thats one of my major probs too, butim sureif we get a good llmd and some good medsit will get way better.
Take Care, BB
Posts: 158 | From Vancouver,WA 98682 | Registered: Aug 2004
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I've had neurolyme for over two years, and I'm happy to say, it's almost gone.
The most important thing to do is get the name of an LLMD (Lyme Literate MD) in your area from someone on this board.
The things that a LLMD will tell you is:
1. You need to take the antibiotics a lot longer than 4 weeks, because it's a very slow-growing bacteria.
2. There are other antibiotics that do a better job of crossing the blood-brain barrier, such as Minocycline.
3. The best clinical success in killing Lyme has occurred when you pulse a cyst-buster like Tinadazole or Flagyl in 2-week pulses on top of your spirochete-killing antibiotic.
4. If you're not improving after a few months, seriously consider empirically treating for a coinfection like Babesia. This was the big breakthrough with me and many others. I tested negative for Babs two times, but after taking a drug that kills these protozoa (Tequin and Mepron), I finally got rid of the brain fog.
You can give your MD a copy of Burrascano's guidelines, but will you, a non doctor, really ever change their mind on treatment? I think not.
Please get help sooner rather than later by finding an LLMD.
Best of Luck, Kris
Posts: 245 | From Palo Alto, CA USA | Registered: Jul 2003
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Micheal, I do have neuro..... symptoms? uuuhhggg lol lets see........ Blurred vision, floaters, flashes of light, light sensativety, noise sensativety, dizzyness, loss of words, brain fog, get lost, slurred or stammered speach, head aches, numbness in face, hands, n feet, back pain, shortness of breath, heart murmurs,heart palpitations, panic attacks, mood swings, inability to drink alcohol, damn it!lol, um ..arthritis in all joints, extreme chronic fatigue, fevers, soar throat, shakes n jerks, weakness in arms and legs, irregular cycle, nausea, vomiting, geeeee have i forgot something?....oh yeah hair loss...Treanment? None for over 2 year...docs, or should i say ducks dont want to treat pople here in WA for more than 4 wks. Cant find an instate llmd yet.
Posts: 158 | From Vancouver,WA 98682 | Registered: Aug 2004
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Kris, I am seeing an LLMD. He's temporarily giving me Zithro/Flagyl combo until we get some CSF and blood results back. After that he implied that he'd have more ammunition for prescribing IV treatment or other treatment. He's also awaiting to rule out some other illnesses, most notably MS.
BB, I know that my LLMD, who is Dr.C in Mt.Kisco in NY, is treating patient from CA. You may wanna call him to discuss your situation. Contact me off the list, and I'll give you his name and phone if you're interested. Also, have you tried posting for an LLMD on the "doctor" list on LymeNet? That's where I found mine.
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my symptoms were flu-like at first with blurred vision, especially at night or dusk, swollen glands (that give shooting pains sometimes) that come and go, mostly gone now. night sweats for a while, now gone- still have the remains of a afternoon fever- its not really a fever anymore- mostly just get one red hot ear for a couple of hours and wonderful, oh yes wonderful fatigue- I cant even stay up past 8:30 at night. Ive been feeling better for the most part but these red ears and the vision has been a staple in this process. This has all been going on for about 6weeks and medication(DOXY) for 4 weeks 200mg. Like I wrote earlier, the body aches are gone I guess, but every once in a while I get the spacey feeling (might be the doxy) and the vision. Thanks to everyone for listening and giving your advice- It really helps to vent.
Posts: 232 | From kennett square, PA USA | Registered: Aug 2004
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Many of the symptoms you describe I have or have had. I started Doxy 100mg twice a day 4 months ago in addition to some alternative treatments. My MD would NOT give me a stronger dosage either.
I was on the Doxy at least 2 months before the brain fog/cognitive thinking improved. So don't be discouraged.
Definitely stay on the Doxy until you see the LLMD.
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