Discussions By Condition: I cannot get a diagnosis.

Can anyone help?

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Miztie
  • June 7, 2008
  • 01:55 PM

I have several medical problems which include spherocytosis, Lyme's, GERD (from the Lyme's), and was diagnosed 5 years ago with subcutaneous T-Cell lymphoma.

The last 2 years, I have been going from doctor to doctor with the following symptoms: low grade fevers daily, with spike in temperatures on and off, weight gain, fatigue, flu-like symptoms, or the feeling of just not feeling well, joint swelling/pain in feet, ankles, knees, and hands (all of which varies from day to day), enlarged node in right side of neck, nodes in thyroid on right side of neck, exhaustion (where I have to take 4-5 hour naps during the day), night sweats, day sweats, and the list goes on and on.

I am currently am in between stage 1-2 of T-Cell and am going through PUVA for a second time, but have been on mustardgin (spelling) treatments for almost a year, and interferon B for almost a year. My thyroid was checked and is function excellently. I have had an elevated liver count for almost 2 years.

I have been tested several times for HIV, Hepatitis A & B, all of which have been negative. I was tested for TB and resulted in 5mm PPD. I had a chest X-ray which was normal. I was told that the PPD result in context of receiving PUVA photo therapy which can decrease the skin immune responses of the type that responds to PPD.

My bone marrow tests have been very good. I have had 2 pet scans which detected the nodes (without cancer) in my neck and but have found no additional cancer in any parts of my body. Also found in a CAT scan was a small adrenal adenoma. I had a 24 hour cortisol and creatinine which also was normal.

Due to all the treatments for my skin cancer, I am now allergic to latex, as well as have light sensitivity for my eyes. I am monitored every 3 months and found my sight has worsen, including unable to see through certain colors (which is the least of my worries).

I am mainly interested in diagnosing my fever, fatigue, swelling, sweats, joint pain, exhaustion, weight gain, etc.. I am told constantly that there is not any thing that can be done. I know that my symptoms are not normal and I am tired of being dismissed. Any suggestions or help would be greatly appreciated.

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  • Hi!!Ok. WoW!!You say you have lyme right??So don't ask more...All the problems you named are from lyme disease...I think you are not treated by a lyme specialist right...Like you had lyme and you think you fight it, am i right??You didn't!!! All your symptoms are chronic lyme disease and you must see a lyme specialist the fastest as possible, tou probaly have co infections too....Join lymenet and find a lyme literate medical doctor in Seeking a dr:http://flash.lymenet.org/scripts/ultimatebb.cgi?Infectious dr can nothing for u, they will tell you it is something else: look at the actions of the attorney general of Connecticut against them:http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284And this movie coming about the disease: http://www.openeyepictures.com/underourskin/uos_background.htmltrailer on youtube: http://fr.youtube.com/watch?v=sxWgS0XLVqwThis link about the chronic lyme and personal story is very interesting too:part 1 http://fr.youtube.com/watch?v=Lmq-y6EU4AE&feature=relatedpart 2 : http://fr.youtube.com/watch?v=BkBhPSMNPzE&feature=relatedSo please find a good dr who know lyme and will treat you properly, You have lyme, you said it yourself, or you had...You have it, please go ahead or new symptoms will come..www.canlyme.com(click symptoms)Hope you will have enough stuff now to understand that all your problems are caused by lyme disease...I have chronic lyme too, and i became veryyyyy ill with all your symptoms at the beginning, before knowing it was it, and if im here today, in my illness it is to help other that doN,t be misdiagnosed or bad treated...Good luck,Fannie
    Fannou 111 Replies Flag this Response
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