posted
(x-post from gen support as suggested by another member.)
While I had my first lyme dx in 1997, after which I had the vaccine, a subsequest dx w/ ehrlichiosis, THIS particular bout has lasted a year now. Previously I had early detection and treatment and felt better in about a month and everything went back to normal.
This time, I started with a general malaise, found out my PCP had moved out of state, had to try and find a new doctor, and by the time i finally received a positive western blot and treatment we had gone from May to September. I got 3 weeks of doxy and it was too little too late.
Then I couldn't find anyone to help me beyond IDSA/CDC protocol when my symptoms continued after the doxy was finished. I had one doctor tell me all i needed to do was exercise and I would feel better, and that she would never consider chronic lyme disease in a patient because it was too controversial.
I finally started oral (minocycline -- orig. posted doxy, but i keep forgetting stuff like this) in the beginning of March when my symptoms had become so bad (like the worst flu ever, all the time) i could no longer work and had to take a leave of absence. The doxy made me exquisitely nauseous, so i was switched to doryx which helped the nausea, but has done virtually nothing for my symptoms. I am fine as long as I do nothing, which isn't hard because most days I am so tired I could sleep all day. But if I have to do anything, it starts up the flu like symptoms again, and leaves me completely exhausted. I run a fever off and on all the time for no apparent reason.
I was also taking artemesinin and grapefruit seed extract, but i had to stop taking them recently for two weeks prior to a colonoscopy and found that the bleeding i was having the colonoscopy to investigate completely stopped while off the supplements.
Doc also has me on hormones because I have some low levels, as well as vitamin D and zinc.
My doctor is not officially an LLD, but ~is~ literate in lyme, and makes frequent consultations with her colleague who is one. We've also had neuropsych testing and an MRI done to try and quantify what's going on with my cognitive impairment. I also have balance issues, some kind of inner ear something going on, i get pooping noises in my ear, as well as jaw pain, TMJ, and aching in the joints of my hands, wrists, and knees.
We're talking abt maybe IV next, but i definitely am interested in adding flagyl and diflucan for the cyst busting, and reproductive inhibition properties. too tired to do much exercise ... but trying to watch carbs and sugar, and have eliminated caffeine and rest rest rest.
I know people have been at this much longer than my year, but I am getting to the point where I am getting really scared that I may never get better. i feel like the longer i am sick, the less chance i have of getting better.
I guess I just needed to reach out because this fear is starting to overwhelm me. Thanks for listening.
Posts: 13 | From Connecticut | Registered: Dec 2009
| IP: Logged |
posted
Wow, know wonder you are overwhelmed. Things sound serious and long term to me, a year is nothing, try having over 25 like me, and I'm still scared every day. You sound like you have gained a lot of knowledge but just can't put it all together. Most here would tell you to get a llmd., some of the best [and there are a lot] might be able to sort this out for you. Maybe try P M.ing, someone like Keebler, Wild Condor Ping Sixgoofy kids they have all helped me and write great posts. I have neuro lyme and can't remember anything so I'll just say HANG IN THERE and take it slow. Baby steps. Good luck.
Posts: 161 | From midwest | Registered: Jul 2007
| IP: Logged |
posted
Treatment does take a long time espeically once the Lyme becomes chronic. If you aren't making any progress with the orals, then IVs might be what you need. I know a year of orals didn't do anything for my husband. For him, IVs stopped the downward spiral and although it took him 18 months of rotation of IV meds he's now basically back to normal.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic