Lupus? Lyme Disease? Something else?

Posted , 5 users are following.

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

I’ve had symptoms for over a year but have been humiliated by doctors.. sent to mental health specialists numerous times for anxiety.. I even go back to GP and tell them the specialist I have absolutely nothing wrong and they send me back again!!! I’m the least anxious person ever! I’m 100% sure there’s something wrong with me.

My symptoms:

Began in October 2016 with what felt like a disgusting flu, housebound for 2 weeks but never recovered. This turned into severe fatigue in which I was made even more housebound was so so frustrated at being too tired to do anything. Joint pains began, as well as carpal tunnel. (I get these very very severely now) Symptoms subsided in January until March when I started getting seizures, this was non stop all day for several days triggered by stress. Went to doctors for seizures and they suspected a vitamin deficiency but they did no tests because severe symptoms stopped.. Yet I still get up to whole body twitching more or less every day now. Had mad symptoms every day from March until June where they stopped for the summer. Symptoms then started again early September and are still occurring now (December)

Other symptoms I can remember are: Severeee headache, constant tingling in hands and feet, awful intolerance to cold where I’d be shivering for hours after drinking a cold drink etc. Weird blood symptoms in which huge bruises come out of nowhere as in MASSIVE or lots of little ones. Sometimes huge and sometimes small bleeding I can see under my skin. Also, bleeding in stool (sorry TMI) bleeding gums. Also I get really bad hangovers in where I have blood in my vomit, also when I drink. Blood tests came back positive for low antibodies, low platelet count and ANA. But a retest for ANA came back as normal but this was when I had no symptoms whatsoever. Because of the humiliation with the mental health specialists I refrained from going GP despite how much it took over my life. Only went A&E once for really bad chest pains I had, I even didn’t go when I was crying because of severe pain in kidneys and down my legs where it felt like my kidneys were failing on me!!  I actually got kicked out of my last college for my symptoms and doctors still don’t take me seriously!!!!!! 

0 likes, 4 replies


4 Replies

  • Posted

    Hi there! Lupus is often a disease that Lyme mimics. This does sound like lyme disease and possible coinfections literally same thing happened to me. Been to the hospital and doctor numerous times. No doctor takes me serious and finds anything wrong. Except i have dangerously low vitamin d level. Which is super common with lyme. I have been sick like this for 3 months now and I was in fact bitten by something when this all started. The tests for lyme is highly inaccurate and if not tested right away there is a good chance it won't show up unless it becomes chronic lyme in the long run with no treatment. My suggestion to you would be to find a LLMD/HOLISTIC DOC/INFECTIOUS DISEASE SPECIALIST. IF not consider going the herbal treatment route on your own and start taking supplements and vitamins. Feel free to message me, I know a lot.

  • Posted

    Hi so sorry to read you're having such an awful time sad. This definitely sounds like Lyme and co to me.

    I've had private testing done which confirmed that in fact I do have Lyme and Co after so many local tests came back negative. Happy for you to pm me if you'd like details of where etc.


  • Posted

    I was diagnosed first with Fibro later with Raynaud's . I didnt like the term fibro because surely pain and inflammation needs a source. I was lucky my partner knew  someone who has a diacom machine . ( Basically scans your body with electromagnetic waves. each of the vital organs and so forth) for example my knee pain and wrist pain . Finally the Lyme disease bacteria was found . In our country they are unable to do blood tests for Lyme . So this diacom machine really helped me . The machine basically gets responses in form of frequencies from bacteria . Each bacteria having a unique frequency . 


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