Discussions By Condition: I cannot get a diagnosis.

Mystery disease mimics lyme disease

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Anonymous
  • September 12, 2007
  • 00:44 AM

For the past year I have had mucle pain, tightness in my chest and back, short term memory loss, switching works around, troble remembering, Reading, writing, I also have been having blurred vision, head aches, digestive problems. Any ideas on what I might have?

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12 Replies:

  • I have an idea on how to help with it...NAET/BiosetI had all of your symptoms. Doc was convinced I had Lyme disease yet my test came out negative. Did you know there are only two labs in the USA that test correctly for Lyme?...Bowen labs in Florida and IgeneX labs in CA. I learned that here in this forum while researching my own illness. I have chronic fatigue syndrome and Fibromyalgia. I was tired and in pain everyday. I had the memory loss, headaces and every digestive problem known to man(woman).Someone in this forum told me that she had my symptoms. She told me that she went to NAET and her symptoms went away. I was desperate...I wentI am now heading back to work for the first time in over a year. Last year I had to apply for social security as I was told I couldn;t work.Guess I showed them, I start my new job in a week!Please look into the first three treatments, you will not believe the improvement in yourself...Best of Luck, my friend...mommy cat
    mommy cat 1654 Replies
    • September 13, 2007
    • 05:31 PM
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  • What is NAET? I'm not the original poster, but for 3 months I have had muscle pain, extreme fatigue, vomitting daily. These symptoms come and go in a 4 week cycle. I have a severe attack that lasts 4-8 days then I have a few days better, then sick for less days then more days better, etc. Then after 4 weeks, I have another severe attack and the cycle starts over. They tested me for Lyme disease and it came back negative. I know this test is not a sure thing, but my doctors won't seem to revisit the lyme disease. They are testing for everything else under the sun taking only the symptoms into account that suits their purposes. Thanks for any help!
    Anonymous 42789 Replies
    • September 22, 2007
    • 01:26 PM
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  • NAET and Bioset are alternative forms of therapy. When I was diagnosed, the neurologist told me patients were finding alternative forms of therapy helpful.In this forum I met a woman who suggested it.I start my new job tomorrow after not working for over a year because I had become debilitated. Please check into it. Some disregard it, but it worked for me. By the way, I had your symptoms too. Be well and best wishes, mommy cat www.naet.com www.bioset.net for practicioners in your area.
    mommy cat 1654 Replies
    • September 23, 2007
    • 03:54 PM
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  • Based upon what I've read lyme disease can be extremely difficult to diagnose and, even though the symptoms are clearly apparent, some people have gone for many years suffering from lyme disease because they were repeatedly misdiagnosed. In your place, I'd continue to press for laboratory tests from labs that specialize in lyme disease testing. Don't give up.....
    Anonymous 42789 Replies
    • September 24, 2007
    • 04:00 AM
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  • I've read that lyme disease can be very difficult to diagnose and that some people have spent several years testing for lyme disease and repeatedly misdiagnosed. It seems these people eventually connected with a laboratory that specialized in testing for the disease and were eventually provided with the proper treatment. In your case I'd continue to pressure for retesting and insist on labs that have a reputation for identifying lyme disease in difficult cases.
    Numbguy 4 Replies
    • September 24, 2007
    • 04:38 AM
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  • Hi, You need a Western Blot test for Lyme and other tests for Co infections. Lyme is not always in the blood when its drawn. Many drs refuse to admit Lyme is a problem in thier area. Don't let any one ***k you around abt it, or you'll be sick a long time. You can go right to the lab and get the test your self. Go to www.lymenet.org/ for more answers."Numbguy", IS RIGHT!!! Part of the dx is clinical. There is alot of info on line abt it. Best wishes~~Jersey Lymie
    Anonymous 42789 Replies
    • September 30, 2007
    • 00:36 PM
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  • maybe it's something autoimmune, like scleroderma or even hashimoto's encephalopathy (which will show elevated levels of thyroid antibodies even if your TSH is normal).Best wishes
    Anonymous 42789 Replies
    • October 13, 2007
    • 04:43 AM
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  • What is NAET? I'm not the original poster, but for 3 months I have had muscle pain, extreme fatigue, vomitting daily. These symptoms come and go in a 4 week cycle. I have a severe attack that lasts 4-8 days then I have a few days better, then sick for less days then more days better, etc. Then after 4 weeks, I have another severe attack and the cycle starts over. They tested me for Lyme disease and it came back negative. I know this test is not a sure thing, but my doctors won't seem to revisit the lyme disease. They are testing for everything else under the sun taking only the symptoms into account that suits their purposes. Thanks for any help!My wife had almost the same experience. Originally she was diagnosed with lyme disease and took major antibiotics for over a year with no help. After 3 years of this she was clinically diagnosed with Acute Intermittant Porphria. There is no cure. She takes continually escallating doses of pain killers. The pain has become incredible. She does have darker yellow urine also periodically which we found by accident that if she sits a jar of it on the window sill for a day of sunlight it turns dark brown??? Anyway you may not have the same thing but is sound the same.
    Anonymous 42789 Replies
    • October 9, 2009
    • 04:24 AM
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  • I agree with the poster above me - chronic Lyme is a strong possibility.
    kermworm 81 Replies
    • October 9, 2009
    • 01:02 PM
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  • For the past year I have had mucle pain, tightness in my chest and back, short term memory loss, switching works around, troble remembering, Reading, writing, I also have been having blurred vision, head aches, digestive problems. Any ideas on what I might have? I have Lyme Disease and Babesia. I live in MS so docs here don't think we can get it if we haven't been up north for a vacation etc. My Elisa test was positive but my western blot was unconfirmed so all docs I went to here said I did not have it - false positive. That was in November of 2007. I didn't get help until 9/28/2009. I was very sick. I had developed severe short term memory loss - sometimes couldn't remember how to get to my job, blurred vision - not every day, fatigue, insomnia, dizziness, thyroid problems, extreme weight loss and then extreme weight gain, ear pain, jaw pain, sinusitis, hearing sounds like a constant hum, irrational behaviour, symptoms of ADHD, lack of focus, muscle pain so severe it felt like I had been hit with a hammer, constipation, numbness in extremities, and then I developed a skin rash that was the most disturbing. Most docs are not literate enough about Lyme Disease and get all the info they think they need from the Medical Journals. The smartest thing you could do is go to the Lyme Assoc website - lymediseaseassociation.org and click on the doctor referral. You will need to register to get this referral, but you will or may have already spent so much money on doctors that think you are in need of yoga, a psychiatrist, a massage or just an antidepressant, than you will ever spend on the Lyme literate doctor that can help you. I am still on treatment now but will go back to the doc in June - my last visit in March was very good and may not need to take meds much longer. I have been in pain with many different symptoms for 5 years now and I know now that I am not insane or psychotic. I just have Lyme disease which helped break down my immunity and I had picked up several viruses and bacterial infections my body could not fight. Good Luck... I waited 2 years to find a doc after I initially was told I had Lyme Disease because I believed the Infectious Disease Specialist, the Rheumatologist, the top Psychiatrist, the Internal Medicine doc, the Endocrine Specialist and believe it or not even the Health Food Store guy that told me I had yeast - (I did have a yeast overgrowth, but that was only the tip). You may not decide to take this next step yet, but if you have Lyme Disease, you eventually will. The think no one really tells you about Lyme Disease is that in the chronic stage it is parasitic. Once you really understand this, it is frightening.
    Jenny45 2 Replies Flag this Response
  • For the past year I have had mucle pain, tightness in my chest and back, short term memory loss, switching works around, troble remembering, Reading, writing, I also have been having blurred vision, head aches, digestive problems. Any ideas on what I might have? IF you also suffer from exhaustion or lethergy after exertion.. you could have Chronic fatigue syndrome causing those symptoms.
    taniaaust1 2267 Replies Flag this Response
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  • Please be tested for Lyme Disease right away! I've had all your symptoms for years and was finally tested positive for Lyme. My doctor and I were blown away, for I never saw a tick or the typical bullseye rash. I HIGHLY recommend everyone become familiar wth this disease and the misinformation out there: 1) First off, you don't need to go hiking in the woods to be bit by a tick, and they can be in your own backyard, ballfields, etc. 2) Almost all states have reported Lyme, and you can't rely on the CDC's underreporting (According to them, Virginia Beach has few cases, but many locals tell of knowing somebody here who has contracted Lyme, and our newspaper has confirmed the disease is spreading and multiplying here.). I urge everybody to become aware of this terrible disease that can mimick many other diseases, including autoimmune diseases, gastrointestinal disorders, and heart problems. Furthermore consult the ILADS website because many doctors who aren't familiar with Lyme don't know which tests to order or how to properly treat this tricky disease.Best of luck, and don't ever give up on trying to find answers!
    Anonymous 42789 Replies Flag this Response
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