posted
Hello all, after two years of treatments I have been off all meds since October 2002. Suddenly this week the skin "shocks" are back all over my body, even in my ears and eyelids. Feel fatigued, slight runny nose, flush easily. Could Lyme just come back after all this time? To my knowledge I haven't been bitten again. I am really depressed and wonder if I should get new blood tests (I had $20,000 in tests and treatments with no definitive diagnosis) or just let another week go by and see if I improve. Thank you -- I have no one else to turn to except my fellow Lymers. Lynn
Posts: 12 | From Maryland's Eastern Shore | Registered: May 2001
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Sorry you have to be here again ......... I get that skin sensation too. Makes me crazy. Feels like electric shocks all over my body.
If it were me, I would make an appointment with an LLMD ASAP. It takes a long time to get in usually.
If your symptoms stop you can cancel.
Were you treated by an LLMD before? Having a LAbCorp test is most likely useless. Better go for Igenex ...... just my opinion.
Have you recently been under more stess than usual? That can bring on a relapse. Hope this goes away but better to check and get treatment before it invades and gets out of control.
Keep us informed, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
One way I check for a relapse is to start taking high doses of vitamin c. If your urine comes out clear it means that your body is using the vitamin to fight some infection which is not lyme; if your urine comes out yellow this means that you could be relapsing. For some reason the body does not use vitamin c to fight lyme. At least that's my experience.
-------------------- Jack Posts: 385 | From South New Jersey, USA | Registered: Jul 2001
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Did you make this Vitamin c test up yourself? I have not heard of it before?
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
Bless you all for taking the time to reply about my possible relapse. To give you a little background, I was on doxy for two years and also one month on IV Rocephin (can't spell it but never mind, it didn't help.) I saw a Lyme specialist and a neurologist (plus six other doctors.)
The neurologist diagnosed me with "bacterial neuropathy of unknown origin."
The LLMD ordered tests through Igenex. He said I had a slight positive response but I never saw the actual results. (Keep in mind these expensive tests were after two years of meds.) He thought I had been over-medicated and encouraged me to let my immune system kick in. I was fine till last week (except when cold weather rolls in and the nerve damage causes some pain in my legs and arms.)
I'm going to wait a few days to see if this goes away, then will call the doctor. In the meantime, thank you all for your time and good wishes. I will keep you posted.
Posts: 12 | From Maryland's Eastern Shore | Registered: May 2001
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posted
Lynn....If you were given two years of doxy, I would suggest a new LLMD this time around. There are so many different abx which work better than doxy for chronic Lyme.
Were you ever tested for babesia?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by robi: Did you make this Vitamin c test up yourself? I have not heard of it before?
Robi, yes I did. I have never heard of it before either but I ran it by my llmd, who is my GP, and he thought it made sense.
When I had lyme, I am in complete remission now, I noticed that taking large doses of Vitamin C my urine was yellow; but when sufferring from a cold/flu and taking the same Vitamin C dose , the urine was clear indicating the body was using it to fight infection.
On the other hand, some people say they take high doses of C for lyme; which only stirs the pot and adds to the confusion.
Whenever I become sick now, that's the first test I do and fortunately , knock-on-wood, it has come out favorably each time.
-------------------- Jack Posts: 385 | From South New Jersey, USA | Registered: Jul 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Lynn,
It doesnt have to be Lyme again, but it could be. How's that for on the fence?
My story is similar to yours. 1991-original tick bite and EM rash -treated with 2 weeks tetracycline and never thought about lyme again for ten whole years.
2000- re-infection or relapse treated with 8 wks of IV Rocephin, and 6 months of orals.
No Symptoms for 4 years!
2005- NO REINFECTION (long story as to how I know this for sure but only I can speak for my own body..it was NO REINFECTION) but relapse. Took 5 monthhs until the physical therapist sat me down and said, honey this is NO SPORTS INJURY. You have a chronic condition of some kind and you have to face it.
I was and still am devastated.
A few things to keep in mind: -Many new drugs and treatment protocols have been put into place that are MUCH better than the old ones!
-There is much more advocacy, support and understanding for us lymies in most places!
-There are MANY new doctors to turn to for treatment.
Were you tested or treated for any co-infections? It has been a relatively recent theory that the undertreatment of Co's is what causes relapsing or chronic lyme.
So much for you to consider, take your time, be patient with yourself and your body.
Trails
PS- I REALLY disagree with your theory of vitamin C, flyers999.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Thank you Trails, Lymetoo, Cave and everyone for your thoughts. I was tested for everything imaginable from babesia and Rocky Mountain spotted fever to heavy metal poisoning. Everything came back negative (except for one Igenex test.)
The LLMD said I had toxic levels of abx in my blood (he retested twice because he couldn't believe it himself.) I was feeling better so that's why he suggested going off the medication. He said if symptoms came back and lasted more than a week or two he would hit it with different meds. I did well so did not require further treatment, thank goodness.
I would tend to want doxy again because I am very allergic to many meds and it helped without making me ill. I know how you feel Trails, it is all very discouraging. Take care.
Posts: 12 | From Maryland's Eastern Shore | Registered: May 2001
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Lynn
I took doxi for 2 yrs 600mg a day- It helped me very much-- After taking the doxi for about a year the good effects lessened tho-- I also got perty toxic and started haveing bad side effects
If I could have changed meds sooner I think it would have been better for me--
When I was finally able to change meds I had a Vast improvement quickly-
What other meds have you tried? How much doxi were you taking? --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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