Lyme or lupus

Posted , 4 users are following.

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

Hi I visit the Highlands of Scotland two or three times a year, walk, cycle.

on returning from holiday last July I began to experience sweats and swelling of fingers. I continued. Going to work until late Sept when I become acutely unwell with generalised joint, muscle pains and hot/ cold sweats. GP diagnosed inflammatory arthritis and started me on steroids. Was referred to rheumatologist who told me was viral. I did have bite on ankle on return fron Scotland with rash although did not see tick. He did ELISA test and all tests for rheumatoid arthritis, lupus etc. all were negative. Have been unwell ever since, sweats, insomnia, fatigue, feet and hands either red and inflamed of cold white/purple. Experienced tinnitus, strange sense of smell, palpitations, rib pain, anxiety and depression. The list goes on!  Eventually persuaded GP that many of my symptoms pointed to lyme he prescribed doxycycline and 3 months on feeling much better. Requested full lyme panel but lab only did ELISA which again was neg but could be false neg again given the fact am still on steroids.  Am now weaning of steroids. Disappointingly saw rheumo again, he tells me doubtful lyme and is querying lupus despite two neg tests for this. So frustrating, run out of antibiotics next week and am still symptomatic. Am looking in to paying for private test. Lyme Disease Action have been so supportive throughout, cannot recommend them too highly.

it seems such a battle, I have managed to return to work after nine months but worried May go down again if treatment not continued.

0 likes, 7 replies

Report

7 Replies

  • Posted

    I'm worried that you are taking steriods which is an immune suppressant - after all you need you immune system to fight whatever you have got.  Ask your rhumotologist what is the cause of Lupus?  I am not a fan of diseases that describe the symptoms not the cause.  If lupus has no known cause then ask him to investigate Borellia as the cause. 
    Report
  • Posted

    Hi Rebecca, yes this is my concern. Initially they diagnosed me as inflammatory arthritis and gave me high dose of steroids, to reduce gradually. Was so poorly would have taken anything. Symptoms did start after holiday in highlands and although didn't have tick embedded did have nasty bite to leg. I did tell rheumatologist who did ELISA test but was neg, but was on steroids. I paid to see another privately who again insisted couldn't be lyme as neg test. Every time reduced steroids sweats and pains recurred so they increased dose again.persuaded GP to treat me for lyme and have had 3 mths on doxycycline but still on very low dose of steroid, because been on for 10 mths have to wean off slowly. Now think maybe symptoms flared when reduced as my own immune system is trying to fight infection. Rheumo insists 3 months of doxy should cure lyme anyway. Given up on him. Waiting for full screen results from RIPL. My pain is not too bad now, still having sweats and feet burn and then look purple. Occasional muscle twitches and palpitations. I agree think nearly killing me on steroids. I want to be sure is not coinfection because if they diagnose lupus (although have had 2 neg tests for that) the rheumo will want yo give me more immunosuppressants. It is such a battle' thank you for your advice
    Report
    • Posted

      sounds like your doctors don't know much, especially as they don't know ELISA tests are unreliable and that Lyme is a clinical diagnosis.  Try going to a doctor other Lyme patients recommend so they can fully investigate your bartonella and Babesia symptoms because neither doctor of yours appears to be looking at those and doxy won't help them. Try reading the book "cure unknown" I think there is some stuff in there you will recognise.  Too many Lyme patients are misdiagnosed with lupus, MS, ALS, MND, CFS/me don't let them misdiagnose you or you'll be stuck on the medication for pain roundabout for the rest of your life with no way out.  
      Report
  • Posted

    I am hoping that the Rare And Imported Pathogens Laboratory will run a full lyme screen. They are aware of my medication history and will hopefully delve a bit deeper.

    it is almost a year since this whole nightmare began but feel at last someone is taking me seriously.

    Report
    • Posted

      If you download RIPL blood request form from PHE lyme info and ask GP to complete and send blood there. I paid to see the microbiologist from the RIPL at Winchester Travel Health clinic. He did suggest my GP prescribe 3 months of antibiotics even though my bloods were neg. am better than I was but feel sure need longer course. You can also pAy for bloods At the TDL and they send bloods to RIPL. Good luck!
      Report
  • Posted

    By the way TDL is the doctors lab, if you google gives you all info
    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