Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I can't get to the computer very often, but value your responses.
DO you think I could be experiencing a herx non-stop since starting an abx regimen 16 months ago?
I am unable to walk now, and stopped all abx one week ago. Since then excrutiating pain has all but disappeared.
What danger am I am of relapsing with LD? How long do I dare to go without abx?
Do you think I will ever recover what I have lost?
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Wow.
I am really sorry that you have been having such a hard time.
I have been on abx for 15mos and I think I have been herxing all along. Sometimes it is really hard to tell what is going on since it is all variations of a theme of not feeling well.
I see you have a lot of posts here...Are you satified with your dr? Your symptoms sound quite concerning.
I do hope you get some direction on what to do next...
I met a couple of ladies at the Jemsek hearing who had been in wheelchairs previously, but walking great now.
I am sure some other more experienced folks will come along...
Take Care, Char
Posts: 1230 | From US | Registered: Nov 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
OK here's my input...
You don't mention what particular abx you've been treating with...
I have experienced tendonitis pain while using levaquin(a quinalone) and had to stop.
I also experienced muscle pain whil on clyndamicin and had to switch.
There are also times that lots of folks had to take a abx vacation due to feeling so lousey.
No one would be able to give you an accurate estimate as to how far backwards you might go off abx... You may not lose anything at all.
Perhaps the toxins from your killing off a lot of the chetes is making you feel miserable and your body needs time to detox.
hope this helps a little.......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by Monica: I can't get to the computer very often, but value your responses.
DO you think I could be experiencing a herx non-stop since starting an abx regimen 16 months ago?
I am unable to walk now, and stopped all abx one week ago. Since then excrutiating pain has all but disappeared.
What danger am I am of relapsing with LD? How long do I dare to go without abx?
Do you think I will ever recover what I have lost?
Monica, maybe a little more specific info ? How long have you been ill ? How long treated and with what meds ? Specific symptoms ?
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Estimate infection at 1988. No treatment at all till 1995.
Kept symptoms under control but never totally eliminated with various abx including 2 1/2 months of IV Rocephin.
In 3/05 started 800mg Ketek, added 100 mg plaquenil, and Cedax which was later switched to Doryx.
In 2/06 started Flagyl. Was supposed to work up to 750mg daily. ONly managed that a couple of days.
By the time I was switched to Vantin and Plaq on 6/20 I was only taking 125mg of Flagyl every other day.
Only took Vantin/Plaq for two days before stopping.
Worst symptoms: horrible right knee pain and right quadricept spasms. These have faded without abx.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Monica,
Flagyl can cause severe nerve pain. If you have still been taking Flagyl, that could be the answer. Talk to your doctor about replacing the Flagyl.
Have you worked with a pain specialist? The only reason I've made it this far in Lyme treatment is because of my pain management.
I couldn't even hold a newspaper up before treatment. Now I'm the strongest I've ever been because of the amoung of yoga I do.
My LLMD is wonderful, but she doesn't know pain management. I worked with a pain specialist, and it helped tremendously, even though he didn't believe I had Lyme. Once the pain treatment was set, my LLMD took over the prescriptions.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I have an appt with a pain management clinic on 7/13.
My LLMD has said many don't make it past the herx without it.
I also have a physical therapist visit me twice weekly in home.
I cannot stand up (balance?) & can't walk.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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I would recommend that you see a neurologist ASAP and see if maybe your inability to walk and rapid decline are related to something else. Have you had any recent testing like brain MRI etc....
Posts: 340 | From Ohio | Registered: Oct 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I have an appt to see a neurologist in August.
Had 5 MRIs 5 years ago that were normal. I was experiencing problems with my right leg at the time, but still had balance and full use of left till recently.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
I'm glad you are seeing a neurologist. Five years is a long time. The tests should be repeated. I've had multiple normal MRI's as well and I have all kinds of neuro problems. Mine have all been within the last year or less though. I think another opinion is good to get even though I don't like neuro's. Especially since your doctor has ignored your rapid decline. I wish the very best to you.
Patti
Posts: 340 | From Ohio | Registered: Oct 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there Monica,
I have never had sever pain from flagyl...did have symptoms of lethargy...
I took it for two straight years at 750 a day...250 three times a day...
Anyway now I just pulse it......
A lot of our pains come from interference with the brain cells and our central nervous system...
I have had terrible pains in the past and nothing wrong was ever found....
Having said that however...I did have to have my knees replaced due to dammage that lyme arthritis caused thruout my life....
I would also see a orthopeadic doc and have your hip and knee checked out for dammage....
Pain in mosst patients is a signal that something is wrong....
Unfortunately with lymies...what's wrong isn't being fixed or addressed in a lot of cases....
Good luck.zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Monica,
sounds like you are on top of things with the pain dr. appt. and nuerologist appt. set up already. Takes a lot of effort to organize those.
Just remembering that my daughter had trouble with walking- said it was like her legs didn't want to work, and loss of equilibrium. Turned out it was the minocycline...
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I have gotten myself up to the full dose of abx that has been prescribed. 800mg Vantin and 400 Plaq daily. Am not herxing like I was on the Flagyl, so it is tolerable.
Even though I can't stand without leaning on something, I am seeing small signs that things are improving. For instance, not having the neuropathy in the legs but that may be from taking the Baclofen for spasms. Also taking pain meds that help. Pain in right knee varies from moderate to intolerable.
Thanks for your concern. Although I have not seen it on tests as yet, I may be suffering damage from the LD on various joints, etc.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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