posted
My illness has progressed to the point that I spent a week in the hospital and then folllowed up with a muscle biopsy. I either have Polymyositis or Lyme Disease manifesting the symptoms of PM. They are testing the muscle for both diseases.
Every time I have antibiotics I get better for several weeks and then get worse than I was before the abx! It's crazy. Two weeks ago I was so weak that my dh had to take me to the ER but I now feel like I have a team of docs trying to figure this all out. The top ID doc who saw me called my LLMD and is following through on the testing that the LLMD suggested! Unbelievable!
I won't know the results for another week or two. I'm just resting at home with a sore leg...hoping I can get my Christmas shopping done online!!
If anyone else has been down this road, I'd love to hear your story!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Every time you take antibiotics, you get better for several weeks and then worse?
This sounds like classic herx timing.
Posts: 8430 | From Not available | Registered: Oct 2000
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The latter can cause the former- they are not exclusionary!!! I hhope you have a doc that knows about Lyme.
*** Arniaud D, Mattei JP, Pham T, Guis S, Baiada-Demoux AL, Serratrice J, Roux H. Related Articles, Links Coexistent dermatomyositis, relapsing polychondritis, and positive Lyme serology. A case-report. Rev Rhum Engl Ed. 1997 Oct;64(10):589-90. No abstract available. PMID: 9385698 [PubMed - indexed for MEDLINE] Hoffmann JC, Stichtenoth DO, Zeidler H, Follmann M, Brandis A, Stanek G, Wollenhaupt J. Related Articles, Links Lyme disease in a 74-year-old forest owner with symptoms of dermatomyositis. Arthritis Rheum. 1995 Aug;38(8):1157-60. PMID: 7639814 [PubMed - indexed for MEDLINE] Holmes CE, Massa MC. Related Articles, Links Skin signs of systemic disease. When the problem is more than skin-deep. Postgrad Med. 1994 Dec;96(8):93-6, 99-102. Review. PMID: 7991480 [PubMed - indexed for MEDLINE] Horowitz HW, Sanghera K, Goldberg N, Pechman D, Kamer R, Duray P, Weinstein A. Related Articles, Links Dermatomyositis associated with Lyme disease: case report and review of Lyme myositis. Clin Infect Dis. 1994 Feb;18(2):166-71. Review. PMID: 8161622 [PubMed - indexed for MEDLINE] Fraser DD, Kong LI, Miller FW. Related Articles, Links Molecular detection of persistent Borrelia burgdorferi in a man with dermatomyositis. Clin Exp Rheumatol. 1992 Jul-Aug;10(4):387-90. 1395222 [PubMed - indexed for MEDLINE] Jarjour WN, Jeffries BD, Davis JS 4th, Welch WJ, Mimura T, Winfield JB. Related Articles, Links Autoantibodies to human stress proteins. A survey of various rheumatic and other inflammatory diseases. Arthritis Rheum. 1991 Sep;34(9):1133-8. PMID: 1930332 [PubMed - indexed for MEDLINE] Dykstra DD, Badell A, Binder H, Easton JK, Matthews DJ, Molnar GE, Noll SF, Perrin JC. Related Articles, Links Pediatric rehabilitation. 5. Joint and connective tissue diseases. Arch Phys Med Rehabil. 1989 May;70(5-S):S179-82. Review. PMID: 2655558 [PubMed - indexed for MEDLINE] Duray PH, Steere AC. Related Articles, Links Clinical pathologic correlations of Lyme disease by stage. Ann N Y Acad Sci. 1988;539:65-79.
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5dana8
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posted by KP 14 December, 2006 08:53 AM ------------------------------------------------
"Every time I have antibiotics I get better for several weeks and then get worse ..." -------------------------------------------------
You will feel worse-much worse -when you take abx which is very common. Most people feel worse due to the die off of bb producing a herx effect. Specially if you have a high germ load the die off/herxing can be really horrible.
In many case's a LLMD will back off then ramp up slowing with the abx .
Polymyositis blood testing usually (but not always) reveals abnormally high levels of muscle enzymes, CPK or creatinine phosphokinase, aldolase, SGOT, SGPT, and LDH.
Have you had a positive Lyme test before? (not that a negative one would mean you didn't have Lyme)
I wonder, can lyme cause polymyositis? I am curious too...
Posts: 240 | From MA | Registered: Nov 2006
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posted
CaliforniaLyme - that's one of the cases that my LLMD mentioned to my Infectious Disease. There are others like that.
Lioness - yes, Lyme can cause the symptoms of Polymyositis. I guess if it can mimic MS, FM, arthritis, etc. why not another strange disease too!
And to answer your other questions, I've never tested positive for Lyme or any other disease they've been checking for (RA, Lupus, etc.). My blood work started showing elevated Liver Function Tests in April followed by elevated CPK, Aldolase and others. This time around my numbers were excessively high - CPK of 12,000!
I haven't considered herxing. I thought herxing started when the antibiotics started killing off hte bacteria - not weeks after the antibiotics stopped working. I'll have to research that idea some more.
Thanks for your insight!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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Truthfinder
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Member # 8512
posted
Karen, for what it's worth, I know a man who was diagnosed with Polymyositis.
Come to find out, many years ago, he had Rocky Mountain Spotted Fever.
So, I would sure presume a connection between the Poly and SOME kind of Tick-borne disease.
Tracy
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bpeck
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posted
I would also make sure you get tested for Parvo virus B19. In th adult- that creates terrible muscle/joint pain and increased liver enzymes.. There's usually a pretty good fever when you first get that - but not everyone reacts the same.
IMO...If you're seeing an ID Dr. he should be tetsing you for infectious disdeases--- not lupus.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
Sorry KP, I didn't realize this was after you were off abx.
I am experiencing muscle wasting and didn't have elevated CPK or any other abnormal muscle related blood test (three in all). Upon checking into the CPK test, it turned out that it may or may not follow muscle damage. Another less than wonderful test, it appeared to me.
But what your CPK results mean, I don't know. Lyme is not responsible for everything but it can mimic so many things or set them off, it is hard to say that they are totally unrelated to lyme. Sometimes you only figure it out after a lot of lyme treatment when the symptom does or doesn't go away.
And if there is still some question about whether you have lyme, it might be useful to know your coinfection status. If you have one of them, then lyme is a good possibility also.
Posts: 8430 | From Not available | Registered: Oct 2000
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bpeck - I was checked for Parvo Virus last winter and was negative. I've been pretty aggressive in getting tested for many things, but so far it's all been negative except for this possible Polymyositis.
I probably didn't word things quite right, but the ID was not the one checking for lupus...that was the rheumy I started seeing last winter after the first ID blew me off. I have a new ID doc now along with the LLMD AND my Rheumy! After 15 months of these crazy symptoms...and my aggressiveness, the docs are actually doing some research since I don't fit into any of their top 10 diseases!!
Lou - I was checked for a variety of co-infections and, of course, all came back negative. The docs do recognize that I could have been bitten by something that isn't tested - like a new strain of something. Sure wish the biopsy results would come back soon!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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