posted
We believe my husband likely has lyme disease, but one thing I'm unsure of is the liklihood of it recurring many years later. He first had symptons in 1987-88 timeframe. He said it was so bad, that he could barely walk. He went to many different doctors and hospitals, including Univ. of Utah and Mayo Clinic. Each place diagnosed him with something differnt (rhematoid arthritis, osteoarthritis, rheuter's syndrome, etc). He said that his then-wife had previously pulled off a tick from his head about 2-3 weeks before his symptons; however he was not aware of any tick borne illnesses then. He also had no idea how long the tick had been there-he has a very thick head of hair. At the time, he was in his mid 20's. He said he went to the gym daily and swam as much as he could. After several months, he finally started feeling better and the acute pain subsided. A few months later, a family member who worked at a local hospital gave him an article about Lyme disease. Apparently, one of the first "confirmed" cases in Missouri. She stated she didn't think it was the first case as Craig had most of symptons. Fast forward about 20 years...starting around last fall, he started getting tingling and numbing in his hands and wrist from time to time. It would get very bad, but eventually subside with aleve or advil. Then, about 6 months later, he got a big "lump" hanging off his elbow. Almost like gout. After spending 4 hours in the ER without being seen, he decided he wasn't going to die and we went home. The lump finally went away. He has since had pain that just seems to increase daily. He never knows what joint or joints are going to flare up at any given time. As it seems similar to those on this board, he feels helpless and beyond hope with the pain. I finally convinced him to go back to a doctor. He went into a walk in clinic and the dr. there has completed several blood tests with everything coming back negative. He had an MRI done, and nothing conclusive other than obvious inflammation and "fluid" around the joints. The doc then decided to put him on doxcyclone anbx to start treating him for Lyme, just in case. He has an appt. with an orthopedic dr. in two weeks, but we're really feeling that this is a classic case of Lyme. We live in a wooded area on the river south of Springfield. Believe me when I say we pull ticks off of us weekly through the summer. I can barely walk to my car without a tick crawling on me. He doesn't seem to get them as bad, but I can definitely say he gets his fare share.
So, I guess my question is, has anyone heard of Lyme disease coming back after all of these years? Or could it be a case of a "new" case of Lyme? Or could a second infection trigger the original infection?
I do want to thank those that have responded on the dr. request. It's great to hear there is an ld here in the area that comes so recommended.
Also, I have another post regarding any remedy to help him fall asleep. He is truly desperate at this point, as it seems most inflicted with this painful disease are. I am praying for all of you!
Posts: 6 | From Springfield, MO | Registered: Jul 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Hi Reney, I know that in the 15 years prior to my lyme diagnosis, I would be sick for months than seem okay for months then the symptoms would return, or new ones would arise. I was like this for years!
I think that's part of the problem of being taken seriously. It makes us look like a hypochondriac. I mean if you have a disease for years, it should just keep getting worse right? Not disappear for awhile just to return months or years later?
Well not with Lyme. I hope more people will respond to this. I've read many stories of people getting better than worse again!
posted
reney, Yes lyme can go into remission. I think many here could tell you the same thing. It varies from person to person the length of remission.
It doesnt sound to me like he ever was really treated for lyme though. The doctor you mentioned gave him some doxy, but probaly not enough. Sounds like it took him quite awhile before he got any.
The good news is that you live in the same town as the best llmd around. (in my opinion, hes my llmd)
I would make an appt with him tommorrow!!! He will give your husband the complete and through exam. Taking all of his history into consideration and do the appropriate testing.
The symptoms that you are talking about with the joint pain and numbness, etc.. sure sounds like lyme to me.
I hope you can get him in right away so he can begin to get better!!!!
Take care and god bless
Sandra
Posts: 73 | From phoenix, az | Registered: May 2005
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posted
I had bullseye rashes in 1992. I never heard of lyme either. I started getting sick shortly thereafter.
It started with eye pain, floaters,wandering joint pain etc...About 8 months later I developed a sudden, severe neurologic syndrome with numbness, tingling, dragging a leg, twitching , weakness, fevers, diarrhea,vomiting and more. Too much to list.
About 15 months after the rash I finally traveled out of state to see a llmd. I was told there was no such thing as lyme in Ohio.
He treated me with antibiotics. After about 4 months I started improving. I got tired of driving to PA and paying out of pocket so I stopped going as I was slightly improved.
I recovered slowly to about 95% but it took a good 5 years.
Two years ago it all came back after having a spinal fusion. So, if I have lyme, it went into remission then came back after the stress of a major surgery.
Patti
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
Absolutely!! REad my story! Being reinfected in your husband's case would be very likely as well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YES Lyme is a life stage disease IMO. My daughter is in full remission but I expect at some point she will fall sick again- hopefully not for years and years- and if I was able to go off abx completely I expect that I would fall sick again one day-
I got "suspected lupus" when I was 21 and when I got bitten years later and got sick I had ALL lupus symptoms PLUS more!!! Since I had Wisconsin tick bite on head at age 12 I suspect this was my first infectioN!!!
It emerges and re emerges and if you are lucky goes into remission-
Yes, yes, yes... He sounds very Lymie!!! I would find an LLMD!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hi reney313
Yes. You can get infected with lyme & it can go dormant for years, only to surface at a later time. It is also possible he could have been reinfected.
If you suspect lyme you could get him get tested threw igenex. It's the only lab I would trust. They read all the bands. Their webb site is www.igenex.com. Any lab can draw the blood. They will send you the paper work. You need a doctors signature & have it overnited to them.
But keep in mind tests for lyme can be iffy. Here'a a link that explain how you can have lyme & test negative:
Lyme is a comlex & comlpicated disease. If it where me I would try to find a lyme literate doctor as soon as possible. You can post in the doctor seeking section on this board & ask around to find a good one.
Here's one more link to the basics of lyme. It's a long read but very informative:
posted
Thank you for your responses and caring! I have made an appt. today for my husband with Dr. C. We feel fortunate he is here in our hometown! I'll keep you informed of the diagnosis. In the meantime, I reading and learning a lot from the wealth of info. on these boards.
Posts: 6 | From Springfield, MO | Registered: Jul 2007
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posted
reney: I am so glad you made an appt with Dr. C and that you live in the same town. How convienant.
I drive 10 hours to see him!!! But he is worth it.
I hope your husband will be feeling better soon!!
Take care,
Sandra
and give yourself a big hug too!! for helping in taking care of your husband. It is great to have a supportive spouse/partner.
Posts: 73 | From phoenix, az | Registered: May 2005
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I am so glad you made an appt with Dr. C and that you live in the same town. How convienant. 
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