Discussions By Condition: I cannot get a diagnosis.

Lyme, CFS, or Neither?? Seeking Answers

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • January 20, 2011
  • 05:45 PM

On August 28th, 2010, I returned home after 3 weeks of Army national guard in the woods of Blackstone, Virginia. That night, my wife found a tick on my right shin and removed it. We didn't think anything of it since I had been pulling ticks off of my body during the entire 3 weeks I was away. Several days later, I noticed a dark, red rash covering nearly all of my right shin (the area where the tick was). It didn't itch or cause any pain. I decided to see a doctor after a few days because the rash was still there. I visited Patient First, accute care clinic, after about 1 1/2 weeks and told the doctor I suspected Lyme Disease (LD). She said that she thought it was contact dermatitis and wrote in her notes that I had complained of itchiness (which was completely false). Despite her suspicions, she ordered lab tests for LD and Rocky Mountain Spotted Fever (RMSF). She did inform me that the tests would probably be inaccurate because it usually takes about 4 weeks for the LD bacteria to show up in the blood. As expected, the results came back from Labcorp and they were negative. I couldn't tell exactly, but I think they only conducted the ELISA test. She had prescribed a topical steroid cream and after a few days, the rash disappeared. About a month later, I noticed that I was experiencing chronic fatigue, feint/dizzy spells, clumsiness, forgetfulness, tightness in my chest, and constant joint/tendon cracking noises. In addition, my left knee would hurt and swell occasionally. I decided to wait before returning to the clinic just in case the symptoms passed. On October 28th, I decided to visit another clinic because my symptoms were persisting. This time, I went to Concentra and again they did lab work and sent my samples to a lab called Quest/AMD Labs in N.C. Again, the results came back non-reactive/negative. I believe they conducted a Western Blot this time. I was taken by surprise because I had no idea what was causing me to feel so differently. By now, I was also experiencing moodiness and lack of focus/concentration regularly. I read information on LD on www.aldf.com and decided to try an infectious disease (ID) specialist. I did not contact any of the LDA doctors because they were all located far away from me in northern virginia and did not accept insurance. The ID doctor performed some motor coordination tests, checked my lymph nodes for swelling (a symptom I had not experienced), and ordered labwork. After reviewing my records and performing the preliminary tests, he told me that he did not suspect LD but wanted to run the lab tests in order to rule it out completely. For the third time, the tests were returned from Labcorp and were normal/negative. And, for the second time, I was shocked. I feel completely lost and still experiencing these symptoms. I continue to have trouble remembering things (for example, I often seem to find myself attempting to heat my coffee in the refrigerator at work - there are other instances that have me wondering, "what's wrong with me?"). Everything I've read indicates I may have LD; however, it is difficult to tell since there is such a large variance in symptoms amongst individuals. The fact that the symptoms can be cyclical or sporadic certainly does not help to reduce the confusion. I am posting on this site for advice/feedback/suggestions. I'd like to know if anyone has experienced similar and can help me figure out whether I have LD, or if I'm just plain nuts. Also, I'd like to know whether or not I should continue to pursue LD (or similar condition) testing. If so, where should I go? I feel I just need answers for the change in my condition. Any advice/feedback/suggestions would be most appreciated.

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9 Replies:

  • It really sounds like lyme. Tests can be inaccurate esp with chronic lyme cases (but your case is a bit confusing as you only had short time, I'd expect the tests to be showing it). I suggest find yourself a lyme specialist to go throu some long term lyme treatment. (maybe something is wrong also with your immune system and hence you didnt form the antibodies to lyme, I suppose those tests look for antibodies to it?????). Be aware that one 10th of lyme cases do develop into CFS/ME according to studies done. (I thought these thou were either ones who got lyme very severely or chronic lyme cases thou). There is a very good lyme forum online somewhere... sorry I cant think where it is but many lymies go there. I suggest to look for it and they will help you find a good lyme doc to at least long term treat like some of them have to do and get that then ruled out. (which then will leave you with the other other answer being CFS/ME).
    taniaaust1 2267 Replies
    • February 20, 2011
    • 11:12 PM
    • 0
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  • On August 28th, 2010, I returned home after 3 weeks of Army national guard in the woods of Blackstone, Virginia. That night, my wife found a tick on my right shin and removed it. We didn't think anything of it since I had been pulling ticks off of my body during the entire 3 weeks I was away. Several days later, I noticed a dark, red rash covering nearly all of my right shin (the area where the tick was). It didn't itch or cause any pain. I decided to see a doctor after a few days because the rash was still there. I visited Patient First, accute care clinic, after about 1 1/2 weeks and told the doctor I suspected Lyme Disease (LD). She said that she thought it was contact dermatitis and wrote in her notes that I had complained of itchiness (which was completely false). Despite her suspicions, she ordered lab tests for LD and Rocky Mountain Spotted Fever (RMSF). She did inform me that the tests would probably be inaccurate because it usually takes about 4 weeks for the LD bacteria to show up in the blood. As expected, the results came back from Labcorp and they were negative. I couldn't tell exactly, but I think they only conducted the ELISA test. She had prescribed a topical steroid cream and after a few days, the rash disappeared. About a month later, I noticed that I was experiencing chronic fatigue, feint/dizzy spells, clumsiness, forgetfulness, tightness in my chest, and constant joint/tendon cracking noises. In addition, my left knee would hurt and swell occasionally. I decided to wait before returning to the clinic just in case the symptoms passed. On October 28th, I decided to visit another clinic because my symptoms were persisting. This time, I went to Concentra and again they did lab work and sent my samples to a lab called Quest/AMD Labs in N.C. Again, the results came back non-reactive/negative. I believe they conducted a Western Blot this time. I was taken by surprise because I had no idea what was causing me to feel so differently. By now, I was also experiencing moodiness and lack of focus/concentration regularly. I read information on LD on www.aldf.com and decided to try an infectious disease (ID) specialist. I did not contact any of the LDA doctors because they were all located far away from me in northern virginia and did not accept insurance. The ID doctor performed some motor coordination tests, checked my lymph nodes for swelling (a symptom I had not experienced), and ordered labwork. After reviewing my records and performing the preliminary tests, he told me that he did not suspect LD but wanted to run the lab tests in order to rule it out completely. For the third time, the tests were returned from Labcorp and were normal/negative. And, for the second time, I was shocked. I feel completely lost and still experiencing these symptoms. I continue to have trouble remembering things (for example, I often seem to find myself attempting to heat my coffee in the refrigerator at work - there are other instances that have me wondering, "what's wrong with me?"). Everything I've read indicates I may have LD; however, it is difficult to tell since there is such a large variance in symptoms amongst individuals. The fact that the symptoms can be cyclical or sporadic certainly does not help to reduce the confusion. I am posting on this site for advice/feedback/suggestions. I'd like to know if anyone has experienced similar and can help me figure out whether I have LD, or if I'm just plain nuts. Also, I'd like to know whether or not I should continue to pursue LD (or similar condition) testing. If so, where should I go? I feel I just need answers for the change in my condition. Any advice/feedback/suggestions would be most appreciated.Have you have an ESR test and C -reactive protein?
    wdiagnosis1 33 Replies
    • February 22, 2011
    • 08:27 AM
    • 0
    Flag this Response
  • Thanks tania! I appreciate the info and the help. I have registered on lymenet.org and already receiving info on docs in my region. cfj It really sounds like lyme. Tests can be inaccurate esp with chronic lyme cases (but your case is a bit confusing as you only had short time, I'd expect the tests to be showing it). I suggest find yourself a lyme specialist to go throu some long term lyme treatment. (maybe something is wrong also with your immune system and hence you didnt form the antibodies to lyme, I suppose those tests look for antibodies to it?????). Be aware that one 10th of lyme cases do develop into CFS/ME according to studies done. (I thought these thou were either ones who got lyme very severely or chronic lyme cases thou). There is a very good lyme forum online somewhere... sorry I cant think where it is but many lymies go there. I suggest to look for it and they will help you find a good lyme doc to at least long term treat like some of them have to do and get that then ruled out. (which then will leave you with the other other answer being CFS/ME).
    Anonymous 42789 Replies
    • February 22, 2011
    • 04:51 PM
    • 0
    Flag this Response
  • In past few days, some brand new research just has been published on CFS/ME and lyme and differences in the proteins in the spinal fluid which they are saying can distinguish. Apparently spinal fluid of CFS/ME and lyme and healthy controls... all are quite different. (hopefully this latest research will be followed up) http://blogs.wsj.com/health/2011/02/23/a-step-closer-to-tests-for-chronic-fatigue-syndrome-and-lyme-disease/?mod=google_news_blog#
    taniaaust1 2267 Replies
    • February 24, 2011
    • 11:23 AM
    • 0
    Flag this Response
  • Thanks for your input tania. I really appreciate it. cfj In past few days, some brand new research just has been published on CFS/ME and lyme and differences in the proteins in the spinal fluid which they are saying can distinguish. Apparently spinal fluid of CFS/ME and lyme and healthy controls... all are quite different. (hopefully this latest research will be followed up) http://blogs.wsj.com/health/2011/02/23/a-step-closer-to-tests-for-chronic-fatigue-syndrome-and-lyme-disease/?mod=google_news_blog#
    Anonymous 42789 Replies
    • February 24, 2011
    • 05:24 PM
    • 0
    Flag this Response
  • On August 28th, 2010, I returned home after 3 weeks of Army national guard in the woods of Blackstone, Virginia. That night, my wife found a tick on my right shin and removed it. We didn't think anything of it since I had been pulling ticks off of my body during the entire 3 weeks I was away. Several days later, I noticed a dark, red rash covering nearly all of my right shin (the area where the tick was). It didn't itch or cause any pain. I decided to see a doctor after a few days because the rash was still there. I visited Patient First, accute care clinic, after about 1 1/2 weeks and told the doctor I suspected Lyme Disease (LD). She said that she thought it was contact dermatitis and wrote in her notes that I had complained of itchiness (which was completely false). Despite her suspicions, she ordered lab tests for LD and Rocky Mountain Spotted Fever (RMSF). She did inform me that the tests would probably be inaccurate because it usually takes about 4 weeks for the LD bacteria to show up in the blood. As expected, the results came back from Labcorp and they were negative. I couldn't tell exactly, but I think they only conducted the ELISA test. She had prescribed a topical steroid cream and after a few days, the rash disappeared. About a month later, I noticed that I was experiencing chronic fatigue, feint/dizzy spells, clumsiness, forgetfulness, tightness in my chest, and constant joint/tendon cracking noises. In addition, my left knee would hurt and swell occasionally. I decided to wait before returning to the clinic just in case the symptoms passed. On October 28th, I decided to visit another clinic because my symptoms were persisting. This time, I went to Concentra and again they did lab work and sent my samples to a lab called Quest/AMD Labs in N.C. Again, the results came back non-reactive/negative. I believe they conducted a Western Blot this time. I was taken by surprise because I had no idea what was causing me to feel so differently. By now, I was also experiencing moodiness and lack of focus/concentration regularly. I read information on LD on www.aldf.com and decided to try an infectious disease (ID) specialist. I did not contact any of the LDA doctors because they were all located far away from me in northern virginia and did not accept insurance. The ID doctor performed some motor coordination tests, checked my lymph nodes for swelling (a symptom I had not experienced), and ordered labwork. After reviewing my records and performing the preliminary tests, he told me that he did not suspect LD but wanted to run the lab tests in order to rule it out completely. For the third time, the tests were returned from Labcorp and were normal/negative. And, for the second time, I was shocked. I feel completely lost and still experiencing these symptoms. I continue to have trouble remembering things (for example, I often seem to find myself attempting to heat my coffee in the refrigerator at work - there are other instances that have me wondering, "what's wrong with me?"). Everything I've read indicates I may have LD; however, it is difficult to tell since there is such a large variance in symptoms amongst individuals. The fact that the symptoms can be cyclical or sporadic certainly does not help to reduce the confusion. I am posting on this site for advice/feedback/suggestions. I'd like to know if anyone has experienced similar and can help me figure out whether I have LD, or if I'm just plain nuts. Also, I'd like to know whether or not I should continue to pursue LD (or similar condition) testing. If so, where should I go? I feel I just need answers for the change in my condition. Any advice/feedback/suggestions would be most appreciated.Really sounds like Lyme disease to me as well. Fibro would be a long shot. LD is missed about half of the time. A person I go to church with had is missed for 8 years, before UVA finally caught it with a different testing set up(can't remember what that was though). Try getting to a major research hospital like Mayo or NIH.
    jackrorabbit 113 Replies Flag this Response
  • To: Wdiagnosis1,Yes when I was last tested, I had only one IgM band show reactive and that was band #23. Thank you for your post.cfjHave you have an ESR test and C -reactive protein?
    Anonymous 42789 Replies Flag this Response
  • First of all LabCorp's testing often sucks for many cases of Lyme. Don't trust it. In fact, we are relying on stone age testing that just doesn't work.Second, band 23 is Outer surface protein C (osp C) and is specific for Lyme disease. As far as I know, it is not cross-reactive.The real test is treatment. If you have a herxheimer reaction (look it up) from treatment, well, you have most likely have the disease.And quite frankly, YOU ARE AWARE OF A TICK BITE at the onset of your symptoms, and you had a rash! If the doctor knew anything about Lyme disease, he would have skipped the test and went straight to antibiotics with a clinical diagnosis. This is exactly what the OFFICIAL guidelines say to do.I mean how stupid can people be? Treat it! The risk of lingering disease is far less than the risk of antibiotics. And if you are prescribed doxycycline, there is almost no risk.
    Anonymous 42789 Replies Flag this Response
  • Ok, I'll be quite frank with you. The official guidelines are terrible, but I will cite what they say anyway. Remember, that rash you had? That's called an EM rash."Erythema migrans is the only manifestation of Lyme disease in the United States that is sufficiently distinctive to allow clinical diagnosis in the absence of laboratory confirmation. In a patient with a compatible epidemiologic and clinical history, the preferred means of diagnosis is visual inspection of the skin lesion."http://cid.oxfordjournals.org/content/43/9/1089.fullThis is a political disease and that's why they haven't done anything to help you.
    Anonymous 42789 Replies Flag this Response
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