posted
I am beginning to think that no one has the same symptomotolgy that I have. I hear people talk about every symptom under the moon, yet it seems like no one is experiencing what I am . If you are, I would love to hear it so will atleast feel not so alone in this. Anyone else have joint and connective tissue pain as there #1 problem.
Basically over the last 5 years my tendons, connective tissue, and joints in every part of my body have gotten horribly stiff, inflamed, and painful. In the last two weeks, my ankles and feet have been so painful that I am barely walking around. The extensor tendons on the top of my feet are just so inflamed and sore. the bones in my ankles are sore. Basically I am a previously very athletic 28 year old male that is getting around like an 85 year old. I am scared.......
I took a year of oral ABX with Dr. C then threw in the towel. Got worse. Then a few months ago started seeing Dr. K. I am currently on mino and Plaquenil.
Posts: 26 | From Memphis, TN | Registered: Apr 2007
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You might find some company over at the roadback site www.roadback.org which is for the treatment of autoimmune conditions with antibiotics. There are people over there that have connective tissue diseases due to Lyme, mycoplasma, etc.
Don't give up. My husband was in horrible shape at one point as it took us a while to get the right combination but now he is doing much better. Maybe you need IV instead of oral, maybe you need antimalarial orals, the variables are many.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
I am not sure if this is the same thing but I have arthritis symptoms. I am 34 yrs old.
It is one of my worst symptoms and fatigue is another one of my worst!
My feet get the worst of the problems. I think it could be from Bartonella?
My hip joints get bad too.
Some days I have a hard time walking. I get stiff and have pain and I hobble around a lot.
I am not sure if it's as bad as your problem but I do know many people who can't walk at all.
You are not alone! I hope treatment helps with this for all of us!!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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they have between 500 - 700 support groups online!
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have joint pain and tissue pain. Right now my hips, knees and feet hurt and although I can walk, I look like I am 90 years old.
I feel like my knees are swollen and hot, but they only feel that way. To look at them they are fine. This is neurological pain. I also have tingling and burning in my arms and legs, also neurological.
But if yours are actually swollen and hot to the touch I would have to guess that you have Lyme induced arthritis.
Pain and fatigue are my number one problems. My pain migrates; like for the first year most of my pain was in the lower half of my body; then it migrated to my upper body for the next year or so. Now in the 3rd year the pain has returned to the lower half.
I hope this has helped!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I also have exactly what you speak of. From my ankles to my hips--in fact I was just stuck in bed for 2wks because of it.
Then from my hips to my scalp I am just hyper sensitive to all touch. Even brushing my hair is like being scrapped with sharp metal wires.
But what i really want to say is...if you find out any info on helping this sort of condition please let me know. my bottom half is very hard to deal with...
Posts: 48 | From San Francisco, CA | Registered: Mar 2009
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posted
I've been on Doxy for a week and a half how long does the pain last? I have all the same symptoms except the swelling. Where can I get some answers, and should I go to a rheumotogist?
Posts: 2 | From maryland | Registered: Mar 2009
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A rheumatologist will treat your Lyme as an autoimmune condition and will use immune suppressants such as prednisone and chemotherapy drugs. Not a great idea for a bacterial infection.
Very few rheumatologists recognize the treatment of autoimmune conditions with antibiotics. Even if the person has been sick for a long time they somehow think the offending organism has left the body leaving the person with a revved up immune system that needs to be calmed down.
Your best bet is an LLMD or possibly an AP doctor from the list at the roadback site.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
I am a 64 yo woman who had NO joint pain until 8 years ago, 9 months after a tick bite. I have seen many docs, some llmds and some rheumatologists as well. . . had abx tx for a time and then the immune supressants. I was doing better until a few months ago and now I feel as if I am back to "square 1." My ankles hurt and are swollen and painful. My fingers are swollen, stiff and painful. My R knee is swollen, hot, painful and so stiff that I cannot bend it. Wondering where to go from here? Good luck and let me know how and what you are doing. Susan
Posts: 11 | From california | Registered: Sep 2008
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jt345
Unregistered
posted
Hi
If I were You I would go back to Your first Doc,You talked of. If He is the LLMD,I think You were referring too.
In the first two years I was in Your shape . IV antibiotics were all that brought Me out of it.
I still walk with a cane and my feet hurt all the time.
How long have You been ill?
The first year of antibiotic were the worst for Me. But as the good Doctor says. "The turtle wins this race not the rabit". There is no such thing as a fast cure when it comes to lyme once it has invaded all parts of Your body.
Listen too these people here They have all been involved with this battle for a long time. And from what I see everyone is different and yet alike.
Most of all do not give up. This Your life You are talking about. Life with pain,seems twice as long,and it is not the good life. Get some help. Be as well as You can be today
Borelia loves tendons and ligaments. Reason is there is little blood flow to these tissues and they establish colonies there where they can evade the immune system and antibiotics.
I am 9 mos into treatment and am now having pain in joints that I didn't have before abx. I assume these are herx reactions, and they last a few hours or a few days, feet, ankles, wrists, knees, hands.
I'm not a doctor but I think you probably have not yet hit the bugs with the right combo, or perhaps need IV.
Have you tried Celebrex for your joint pain? I went on Celebrex as soon as it came out about 10 years ago. My joint pain, mostly spine, was severe. I now know that Lyme was probably responsible. Anyway, the Celebrex was like a miracle, within a few days it knocked out 80% of the godawful stiffness with no side effects. I took the max dose 400 mg/day.
I have cut way back since being on abx, and sometimes stop completely for awhile. Then WHAM, the joint pain comes back with a vengeance. Then I'll take some Celebrex to break the cycle, and I'm OK for awhile.
Celebrex is the only cox-2 inhibitor still on the market. You might want to try it for relief. Good luck.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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