sick for over 30 years......test results negative

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I have been chasing a cure for my illness for over 30 years....Cushings? MS? CFS ?  ?   I have had almost all the symptoms of Lyme except joint pain, so recently my husband thought maybe I have Lyme and wanted me to get tested, but the results are negative. I'm wondering if I should try to test again? My  integrative doctor suggested putting me on antibiotics for several weeks 'to break up the cysts' and maybe test again. I'm so tired of all this. I just want a diagnosis at this point so I can tell people it's not imaginary. Over the years I've prayed and researched and stumbled onto many of the supplements and herbal things that Lyme patients recommend, so I do feel quite a bit better than I used to. 

Is there a better time for testing? As in, should one test when one feels rotten, or on a better spell? Should you stop all supplements and antifungals for a while before testing? Is 33 years too long to expect positive test results?

0 likes, 11 replies

Report

11 Replies

  • Posted

    Sorry you have been going through this for so long, it is very frustrating to say the least. I am in the same situation, tick bite in 1995 but lyme test came back negative so no treatment, just antibiotic cream for bite. Test repeated 3 more times over the years with worsening symptoms and alot of missed work. I just had blood drawn and sent to Igenix and really hope it comes up positive. You might consider using this test as it is supposed to be more sensitive and accurate than the others.

    Rick

    Report
    • Posted

      I did use the Igenix test, but only their Western Blot test. I see they have many other Lyme tests, and Lyme-related (co-infection) tests. What I don't understand about your case is that you actually have the rash to prove it. More and more websites on Lyme say they don't even go by testing anymore, just symptoms. I would think that the rash is a big one, wouldn't you? 

      Report
  • Posted

    As a sufferer for 21 years but still unable to get a positive test, I do sympathise. FWIW, I find colloidal silver helps (and no, I do not have a vested interest).

    Good luck to you and Richard

    Report
  • Posted

    Hi Cornelia, I too have been sick for a very long time. First tick bite in 1985, a few more in the 90's. I had never heard of a problem with tick bites so I did nothing. I had no rash but my health has been going downhill ever since. Doc tested me a while back and it came up negative for Lyme but it wasn't the right test. I have been unemployed for a long time and dont have the money to invest in a LLMD or testing. It didnt come clear to me that I was dealing with Lyme until this year. The only time I feel well is when I do MMS multiple times a day. It is hard to do as I forget. It will cure I am told. If I could get my brain back I could go that method and feel better in a couple weeks but I keep tripping over my own forgetfulness. So, now I have just begun the essential oil protocol for Lyme and I am very hopeful. Would love to talk with you about all this. No one understands and everyone seems to walk away without even asking questions. I'm assuming they think I'm looney and should follow doctor orders and get on anti-depressants but I am not a mainstream medicine type and besides I am quite sure it is not all in my head... I wish you the best and encourage you to read about MMS/Jim Humble

    Report
    • Posted

      I can vouch for MMS. I tend to use this for severe bouts but if the symptoms start off mild I do for Colloidal Silver as it's much easier to take and doesn't involve any preparation. I had a severe bout earlier this year and a prolonged course of MMS (about 6 weeks) seemed to do the trick.

      Report
  • Posted

    Hi. Try concentrating on co infections. They are harder to hide as they are a different type of bacteria that can often be seen by blood smear. They seem to have a similar effect on the body to Lyme disease. Also you can ask your doctor for an ACE test for sarcoidosis, this has very similar symptoms to Lyme, they don't know what causes it, I will leave you to fill in the gap. ... If it is raised look down the list of co infections that can cause lung changes and find a British test as it would seem our NHS will not accept anything else.

    My tests for lyme were negative. After a raised ACE test I used a private bloods lab and tested for rickettsia and ehrlichiosis which were positive. The lab may want a referral, it was a bit reluctant and said no one asks for rickettsia tests anymore. I was lucky I had a letter to infectious diseases to show them. Infectious diseases do not seem test for these things normally, in my case they did nothing not a single test yet again and two weeks after discharge my bloods came through positive from the private labs as the bloodwork takes good couple of weeks to develop. I have made a formal complaint but am still not being treated and one of these infections has a worrying fatality rate. best of luck x

    Report
  • Posted

    Look for the co infections as they are easier to find. Use a home grown lab if possible as doctors have less to argue on. Some of these co infections come and go with stress. they affect red and white bloodcells and are not the same as the lyme bacteria. Rickettesia is not always tested for. I have 2 rickettsiA infections but my bloods look normal. I am awaiting treatment.
    Report
    • Posted

      Ah then cannot help..but try to figure the lab the infectious diseases hospital use. The trouble with private labs is that sometime doctors will disregard the results if they don't trust the lab and then your back is against the wall trying to get treatment. I believe the US have a more comprehensive grasp of co infections . I am stuck in the UK with infections from the lone star tick and it seems no-one has a clue here.

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up