posted
I was tested for Lyme in 2001 and provened to have it. I started on antibiotics and other meds and my stiffness is now at the point where I have hardly no balance. I can only walk with a walker. What is going on? I seem to be getting worse. My blood was sent to Florida and came back showing lyme bacteria on my cells but I've been on meds for 4 years and still can't walk without a walker. I'm almost at the point of giving up. Please, if you know something that could convince me that I'm going to get better then please let me know.
Posts: 58 | From Andover,Ohio,USA | Registered: Nov 2003
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posted
What meds have you taken and have you been on the meds the whole 4 years? Were you ever tested and/or treated for co-infections? With some more info, maybe we can help.
Posts: 107 | From VA | Registered: Mar 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Maybe you need different medications, or combinations of medications. Maybe you need to have coinfections treated, in addition to the Lyme disease. Its hard to tell from what you have said.
There are a few people who seem to have a genetic susceptibility to a more severe arthritic presentation. Those may do well on different meds than just the antibiotics.
Do you have a knowledgeable Lyme doctor treating you? It sounds like you need someone very up-to date on the newer treatment protocols. Look in the links for newbies at Dr. Burrascano's Treatment Protocols.
posted
Sorry about not giving enough info. I'm now on doxy and ketek. I take all kinds of vitamins and stuff for my stomach, stuff for my joints, stuff for my muscels. I've been on other combinations of meds through these last 4 years. I go to a very good doctor in Hermitage, PA. I went to a health expert back in 2003 and quit all meds for about 10 months but that wasn't working out either so I went back to the doctor and he put me back on my meds. Maybe my balance or lack of is causing my stiffness or maybe my stiffness is causing my balance problem. I don't know anymore but I can't seem to get better, I don't feel bad, I just can't get this balance and stiffness under control.It's causing alot of cordination problems also. If you have any ideas, please let me know. Posts: 58 | From Andover,Ohio,USA | Registered: Nov 2003
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
daisylyn, I have to run right now, but wanted to check in with you. If you are seeing a good doctor who knows the treatment protocols, that is an important step.
Another thing that has been extremely important to me is yoga. Not the fancy yoga you might think of. I do yoga for wimps. Yoga for seniors, for the ill, restorative yoga, anything that I can handle. Many times I have only been able to do yoga that is completely supported by cushions.
This has helped my stiffness and balance issues tremendously. During periods when I was unable to go to class, or do it at home, I would regress, and tell how much it helps.
A good physical therapist is another option. Someone who understands this illness, and will take it slowly, but help you regain some movement in your joints and muscles.
I recommend you look around and see if you can find a good class for people with special needs. There are many such classes now, as yoga has become a big deal these days. In my class, there are 80 year old women and men. Some days they are better than I am, but I don't care any more. I love going to class, because I can feel how much more I can do than when I started. Just go easy, but keep going is my motto these days.
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I too am very stiff and walk with a walker.
This, I believe, is as a result of the herx I have been experiencing since starting my new drug regimen 11 months ago.
I am taking 800mg Ketek, 100 mg Plaquenil and 800 mg(I think)of Doryx daily.
My story is a lot like yours. Are you seeing any improvement at all? Even teeny ones? This is a disease of inches rather than miles.
Did you have other symptoms appear and disappear?
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
hi, Sorry to here of your troubles daisylynn.
Stiffness in me is caused by spascity, when in pain muscles spsam/;ocl so very stiff. Sitting more thank 10mins aggravates it. The more movement I so the better it gets. Yoga excersises helps. ys, I do the wimpy type.
Physical Therepy helps target problem areas and stregthening the core muscles (back, tummy, thighs, and legs) does help confidence which helps y balance. Can you get a prescription for PT from your Dr.? Having the professional guide my regeime has helped me. Prevents me from doing things wrong way so I don't "trigger" more spasms.
Herbal Restless Leg treatments, with quinine (easyily found) also helps. Tonic water available at any supermarket) with quinine also has benefits.
I know how frustrating can be but remeber if we don't use it...we will lose it. Hard to keep going at times but improvents do come.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
dmc describes mine exactly. I get tbe stiffness primarily in my ankles and shoulders. Exercise is definitely beneficial all around for improving health and reducing the stiffness. I bought a book on yoga since I'm not up to going out to classes yet.
Do you have peripheral neuropathy? Pain/burning in hands and/or feet? If so, are you seeing a good neurologist for it? I've been much better since I started medication for the neuropathy - I find I walk a bit easier and I lose my balance less often. It did take 3 tries with 3 different meds before we found the one that worked the best for me.
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Mizmo, for the neuropathy I dot a "rebuilder" which has help the feet. I had foot reconstructive surgery in June. Found out about it on aan MS alternative website. It's help alot with residual pain. Had to start slow...low electric pulses. Expensive but the website has a good description of what neurapathy is.
posted
I am in the same boat. My main problems are spasticity/stiffness and balance. I also use a walker full time, for if not I would just fall over. My balance sucks ! While exersise does help somewhat the stiffnes is always there.I have noticed my balance improves when I am less stiff.I have tried various drugs for it, that just made me feel like a limp noodel and ,I just slep instead of walked so I didnt see the point.So if you find the magic cure for it please let me know.Terri
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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posted
I found out through blood allergy testing that I am allergic to propylene glycol, its in everything from toothpaste, meds, cosmetics, hair color, mag supplements, IVIG (certain brands)etc. That stuff makes me feel drunk,spacey and dizzy
I have alot of stiffness also and walk with cane. That makes my balance stuff worse. My doctor wants me to do MUA, manipulation under anesthia SP? (you get the picture) There is alot of info the net re: this. Sounds like a new form a torture Posts: 315 | From USA | Registered: May 2005
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posted
Do any of you have any other diagnoses? Has anyone used IV zinacef, zithro, mepron or tindamax?
Posts: 39 | From NJ | Registered: Nov 2005
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posted
Breaking this up for us chronic lymies of decades who can't read LONG continuous paragraphs.
Please try to limit to 6-8 lines of text and DOUBLE space in between. Thanks for helping us, help you.
quote:Originally posted by daisylynn: Sorry about not giving enough info. I'm now on doxy and ketek.
I take all kinds of vitamins and stuff for my stomach, stuff for my joints, stuff for my muscels. I've been on other combinations of meds through these last 4 years.
I go to a very good doctor in Hermitage, PA. I went to a health expert back in 2003 and quit all meds for about 10 months but that wasn't working out either so I went back to the doctor and he put me back on my meds.
Maybe my balance or lack of is causing my stiffness or maybe my stiffness is causing my balance problem. I don't know anymore but I can't seem to get better, I don't feel bad, I just can't get this balance and stiffness under control.
It's causing alot of cordination problems also. If you have any ideas, please let me know.
Stiffness is the pits for me too. I need to get up every 15-20 minutes, but don't & then suffer for it. Takes forever to get out of the card seat when we used to travel.
MSM/glucosamine really helped me a lot on this.
1 of your meds might be making you dizzy affecting your balance. Mine have done that too. good luck to you.
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