posted
Anybody dxed or almost dxed with MS before LD, take a long time improving with abx...and then improve greatly?
How long did it take for you to respond favorably?
What do you think turned things around?
Maybe we can form a group of AIBs (auto-immune buddies) I don't know about you, but I really can get discouraged at times.
Posts: 830 | From Colorado | Registered: Mar 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Yep, DX MS in 1988 found out lyme Sept. 2003. Been on a variety of abx/antimicrobiles treatments. Each one I improved. Did stop each protocal before starting new group. I can email you my abx history tomorrow.
Right now I feel the best I've felt in 20 years. Recently had foot reconstuctive surgery so not very mobile but feel great.
The first year gradual improvment...other people noticed more improvments in me before I did. I just plugged along. IV Rocephin for 5 weeks in Jan. 2004 didn't give great improvement but I think it jump started neuromuscular repair. When I was on Zithromax & Mepron I got lots of energy back. Ketek & Tinidasole last summer -most improvment in neuromuscular that I saw but was tough on me.
I'm on Minocycline & diflucan since April. Love this combo. Drive my LLMD nuts cause I keep telling him how happy I am with the way I feel.
These are the ones I saw/felt most progress. There were others, and did pulse but info too long to put here.
It is hard to see day-to-day improvements when you first start lyme treatment but when you look back by months you'll really notice. I even forget what my symptoms were...have to look back on records.
Give yourself three months before you notice changes when you look back.
Symptoms started to improve around the third month under treatment, things really turn the corner after treating the co-infections; on my ase babs and bartonella.
I been under Lyme tx for a little bit over one year and I keep improving. Yes, I have some horrible herxing that make me wonder but after the stormy herxing things get a little better than before.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Yes I was dx'd with MS before lyme...among other things......
Saw great improvement with amox and doxi for six months then relapsed big time whtn they took me off...got IV next but not long enough...
Still much fatigued....still get occasional menangial type pain in back of head and neck...lots of stings and crawling sensations,and pain whenever I overdo.... nightly sweats...
Better than I was back in 97 but still tying to beat this thing outright...if that's possible in my case....zman
Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Treating co-infections seem to be key, don't they? I was on zith mepron and had to stop due to herx. Now on flagyl and going to add biaxin in a few days.
Gotta go slowly. Boy is that hard.
I would never take the MS drugs b/c it suppressed the immune system. That never made sense to me. I always felt there was a reason the immune sys was attacking itself. Now the pieces are beginning to make sense.
Posts: 830 | From Colorado | Registered: Mar 2005
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posted
I was dxed a few years ago after 3 neurologists said, "no way." My brain is clear (empty maybe?) but I have a lesion in the middle of my neck and optic neuritis.
I refused the MS drugs and I am glad now. They wanted me to go on this chemotherapy that is for prostate cancer because I was progressing so fast.
Tested positive for lyme and babesia 6 months ago. I grew up in the woods in Penna. on a lake.
Posts: 830 | From Colorado | Registered: Mar 2005
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posted
Told possible ms in '84 secondary progrssive ms in '98 treated for lyme since 2003...mino/rifampin, doxy,flagyl (had to pulse extreme herxing) I think the flagyl helps a lot(does something for babs?) Anyone have Severe heat intolerance?
Posts: 740 | From BC Canada | Registered: Mar 2003
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The MSAA gives us a free cooling vest to use, if we request one. I keep mine in the freezer and don it in the heat of the day.
The heat is debilitating here in the Deep South. Email me if you want more information.
Posts: 830 | From Colorado | Registered: Mar 2005
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
3 lesions on my brain. No official DX of MS, but I peered over at my file and it looks like the neurologist might have suspected it (this was before I got the positive WB back, and no one would believe it was lyme, even though I had a tick stuck in my head).
quote:Originally posted by johnnyb: 3 lesions on my brain. No official DX of MS, but I peered over at my file and it looks like the neurologist might have suspected it (this was before I got the positive WB back, and no one would believe it was lyme, even though I had a tick stuck in my head).
- JB
Idiots. Were they affiliated with RWJ by any chance?
I hope you've switched doctors.
Posts: 749 | From New Hope, PA | Registered: May 2002
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posted
Up for more replies please...
Posts: 830 | From Colorado | Registered: Mar 2005
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Hey, guys...
aliyalex, is "sx" symptoms or a typo for "dx"? The day of the bite (12 hours later) I just felt very itchy. Symptoms gradually got worse. It takes forever to get tests done and results back unless you go to the ER.
JustMeInCT, I hope they go away.... I've been denied long-term care insurance from my job. Once they see lesions, they run for the hills!
richtersl, the first nero I saw was actually from JFK. My new neuro may be RWJ and St. Peter's affiliated. He did check for lyme when they did a spinal tap- I would NEVER get one again- but the tap was the only neuro test to come back normal. Had the tap done in RWJ, and I am still able to walk, so I guess the doc who did it wasn't that bad .
posted
As part of my initial MS diagnosis, I had a Quest lyme test, a spinal tap with the fluid sent to Quest for testing, and a brain MRI.
None of the tests came back and said that the patient has MS. Instead, the text of the report say something to the effect, 'could be MS'.
However, in hindsight, if the Quest Lyme test was negative and the people analyzing the spinal fluid had this information, wouldn't they just go with the flow and say not lyme..but maybe MS.
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