Discussions By Condition: Medical Errors

Finally a Diagnosis!

Posted In: Medical Errors 11 Replies
  • Posted By: sosickofthis
  • May 20, 2007
  • 04:23 AM

After 8, yes count them 8 long long painful years, I finally got a diagnosis. Keep searching and don't give up. No one knows your body better than yourself. I was having the symptoms below, and I copied them from one of my first posts on this bored.

Severe dizziness
popping/fullness in head
tingling on side of face
neck pain
back pain
both knees pain
irregular menstrual periods
hair loss
flu feelings
puffy eyes
visual disturbences (mass amounts of floaters, flashes, see colors,blurry vision (inability to focus) lines and black pulsating movement)
feeling of "Impending doom"
anxiety (because of symptoms)
ringing in ear
heart skips a beat, rapid heartbeat
feel weak & "sick"
feel like Im going crazy because of disease
feels like Im being eaten away by disease (slowly)
cannot/will not drink alcohol because of symptoms
cannot enjoy my life (IE someone asks me to go somewhere and I can't because of symptoms could lay me out)
no sex drive
cannot focus
zapping pains in thighs and calfs (aching too)
feeling like my knees are going to explode (and ache)
joints in wrists, shoulders, neck kill me
get spotty like red rash off and on (DR said almost resembles ringworm)
fullness in head (feels dangerous)
cold and hot flashes
shakiness (sometimes)
bad breath (geographical tongue)
fluid sometimes in ear (when I put my finger in it)
feeling as though someone is pushing on my shoulders
floor "slips" from underneath me at times
swollen lymphnode on back of skull that appears off and on with flu like symptoms

I've been through COUNTLESS Dr's and even more ER visits. I finally found a Nuerologist diagnose me with Lyme Disease!

I pray for everyone here, I know how frustrating it is. I would type my whole story, however, it would take a 400 page book.

Take care all, and god bless!

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11 Replies:

  • Good to hear that you finally found a doc that could diagnose you correctly. Lyme's is much more common than most people think. It is not just carried by ticks, it is in almost all human body fluids.. Some researchers are now saying many of our "autoimmume" diseases are actually lyme - like MS (Multiple Sclerosis) Rheumatoid Arthritis, and many more. IME only Bowen and Igenex Labs can make really accurate diagnoses at this time. This means that many docs using tests not from these labs are not testing correctly. And sosickofthis - ongoing antibiotics are not the best treatment. You may want to access some more alt. docs for treatment. Try www.lymenet.com
    Anonymous 42789 Replies Flag this Response
  • So sick of this:I am so happy for you! But not in the sense that I am happy you are ill:)!I have a few questions for you:The visual distrubances you mention....did you see an opthamologist? Mine can find nothing wrong, but yet I have the same symptoms as you. I think you are one of the few people on here that have the visual disturbances along with the other symptoms. Did you find out why you are having the visual disturbances (for instance is your optic nerve inflammed, etc.).The MOST important question: HOW did you convince your docs? WHAT finally made your situation turn the corner?I know it would be long, but could you post your story on the "Share your misdiagnosis story" section?Ralph: I have not been able to find any listings of other insects that carry and transmit Lyme. Is it possible to get Lyme through sexual contact (would love to make a joke such as...."some men sure act like insects"....really just kidding)? I see from many posts that you think many actually have lyme. As suggested to someone else on this site, would you also create a thread/post that has some of the more unusual symptoms of lyme? I know it would be very helpful. I find it ironic that my Dr. tested me for syphillis rather than Lyme!!! Do you think Lyme is a "doctored" syphillis spirochete? Or rather, a "mutation" of Syphillis? I think I have this. I would rather just order the darn test myself and take the results TO my Doc.! Is there a way I can do that?I have a list of a few things of what I think I have.....but when I present my symptoms to my Docs, they never suggest them. I had one Rheumatolgoy Doc actually refuse to test me for Lyme.Really, I should have been a Dr. myself!Don't any Docs THINK about the body rather than look at it as a textbook case? Thank you both and I wish you all the best in your recovery.
    Anonymous 42789 Replies Flag this Response
  • Sorry it took so long to get back to you. I will post my story, but I need time :-) Let me try and answer a few of your questions in the meantime. Visual disturbances that I have are caused by the infection (Lyme). It has attacked my central nervous system, brain etc. Lyme Disease is a Spirochete, like syphilis. Syphilis is T. Paladium & Lyme is B. Borgeferdi (sp?). I thought I had Syphilis for years, I had a lot of signs and symptoms. I've had an RPR test done 3 or 4 times and it always came back non-reactive (negative). "Lyme disease is clearly a very complex disease. When considering a similar spirochete disease, syphilis, it has been said, "To know syphilis is to know medicine." However, to know Lyme disease is not only to know medicine but also neurology, psychiatry, politics, economics, and law. The complexity of this disease and all that surrounds it challenges our scientific as well as our ethical capabilities. I shall not address every aspect of this disease but I shall focus on diagnosis, in particular from a psychiatric perspective." Robert Bransfield, M.D.From my research, there is no real proof of transmission through sex that I know of. I will tell you though, my fiance displays almost all my symptoms, yet his are subtle.What you really need to do is find a LLMD (Lyme Literate Medical Doctor). I can definately help you depending on what state you live in, please let me know. I know how hard it can be going through all these symptoms and emotions. Keep in touch!
    sosickofthis 31 Replies Flag this Response
  • sorry, I missed something. The only lab I would go with is Igenex. Unfortunately, there is no 1 single test for Lyme and the ELISA (what reg MDs use) is the most UNRELIABLE test there is.
    sosickofthis 31 Replies Flag this Response
  • How did you get diagnosed? By blood test?
    Eatafruit78 960 Replies Flag this Response
  • Hello Eatafruit, Yes, I had a positive Western Blot.
    sosickofthis 31 Replies Flag this Response
  • Wow! I have all the eye and most of the same body issues you have/had. It started last July, about a week after a camping trip vacation. I think I had a Western Blot though and it was negative. You had this condition for eight years? How are you feeling now?
    sarahl1976 19 Replies
    • August 22, 2007
    • 06:05 PM
    • 0
    Flag this Response
  • I have all of the symtoms, but the docs said no lyme disease, if they do tests like you say are inconclusive, how do i get the one test you had done or the lab. thanks in advance
    Anonymous 42789 Replies
    • September 5, 2007
    • 06:21 AM
    • 0
    Flag this Response
  • I would suggest going to www.lymenet.org and have them help you find a Lyme Literate doc. I am not sure if you can get the test done yourself, so search for the Igenex and Bowen labs. Regular docs do not have much of a clue. RalphDr. Gus
    Anonymous 42789 Replies
    • September 5, 2007
    • 00:29 PM
    • 0
    Flag this Response
  • I would have never had guessed that...I bet they thought you were a hypochondriac. I am glad you finally got the answer.:)
    birdie 40 Replies
    • September 6, 2007
    • 03:31 AM
    • 0
    Flag this Response
  • Thanks for the response Ralph. I checked and haven't even had a Western Blot or anything. This information is very helpful.
    sarahl1976 19 Replies
    • September 10, 2007
    • 11:50 PM
    • 0
    Flag this Response
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