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Worried sick, possible lyme disease?

Posted , 4 users are following.

Chopper27
Chopper27

Hi im a 27 year old male and im going through alot right now. Over the past 12 weeks or so i have been struggling with symptoms that seem to overlap with a number of conditions including lyme disease. My symptoms started with calf twitching which after a week spread all over my body, the twitching is mainly in my legs though. I then started getting burning pain in my forearms and hands and it was to the point i startedto feel weak. I now have burning skin symtoms, sore legs and an ache body, very much flu like, i am currently in the process of getting an emg test done to rule out motor nuerons, if this test comes back negative i truley believe that lymes disease looks like the most likely cause. The reason for my theory is in the summer june 21st i done an event in scotland called tough mudder, its an obstacle coarse through woodlands and obviously mud. The area that it was done at isnt probably known for ticks but the conditions were perfect for them and the coarse and some mud is shipped in from all over thr the place. The reason i mention this is because 24 hours after completing the coarse i was struck down for 4-5 days with what i thought was a bug. I think of myself as having a high pain tollerence but this was the worst ill feeling i have ever felt, constantly sick and diarrhea non stop. I eventually got better but my fitness levels dropped drastically. It was about 4 weeks later that the calf twitching started. And all the other symptoms snowballed. I forgot to mention that i suffer numbness and tingling mostly in my pinky and ring finger at times. One thing i should say is ive never had headaches. My sleeping is terrible i dont get any which for me is so unusual as i have always loved sleeping and usually find it easy. I have seen people with lymes describe my symptoms to a tee and experiences with doctors who dont care and i was wondering if lymes disease is a possibility for me?! If it is also what should i do about it? Many thanks to anyone who responds. 

0 likes, 13 replies

13 Replies

  • david59662
    david59662 Chopper27

    Posted

    Hi,

    You need to get tested for lyme, Western Blot method is best, but maybe just ask the GP for a course of doxycycline anyway as lyme testing is apparently not reliable.

     

    • Chopper27
      Chopper27 david59662

      Posted

      thanks for the reply, just had a look at all your posts we are very similiar, i am also part time/full time athlete in scotland and this has totally knocked me down. i was always so fit and energetic now i can hardly get out of bed. my gp is useless and doesnt listen to me. had to go private and get an appointment with a neuroligist as i have it in my head ive got als but having read all the posts on lyme and the timing of me getting ill after tough mudder it makes sense. i will defo take your advice, any other advixe would be very gratefull as im just new to all this, symptoms been about 12 weeks about 17 weeks since i done tough mudder.
    • david59662
      david59662 Chopper27

      Posted

      Hi mate,

      Yip, my own curiosity with lyme stems from the fact i did a triathlon i the highlands August last year, i was also in Bulgaria did alot of outdoors stuff in July. I'm 3 weeks in to a 6 week course of doxycycline and i have felt better, certainly not cured, but who knows what will happen the next 3 weeks. I've been taking some new supps also during this time so not sure what is having the effect. All i do know was that i have never felt so il in all my life with this 'CFS'. Whatever this is. I thik you should bash in and do some doxycycline, 100mg twice day. I bought mine online, cheap.

    • Chopper27
      Chopper27 david59662

      Posted

      where did you buy your doxycycline if you dont mind me asking?! 
    • caroline91964
      caroline91964 david59662

      Posted

      Hi,

      Could you plz mail me to let me know where you were able to buy doxycycline online. Would be really helpful.

      Thanks!

  • fat_fingers
    fat_fingers Chopper27

    Posted

    Hi Chopper

    reading your post is like listing my own symptoms. I too fell poorly after spending a fortnight in the highlands. Was diAgnosed with reactive or viral arthritis. I was put on high dose of steroids initially and told to tail off. Every time I tailed off everything flared again so was put back on high dose again. The rheumatologist did test me for lyme initially, was neg but wS on steroids. This can, I have since read, give false neg results. My GP eventually agreed to consider lyme when I listed my symtoms against the information leaflets from LDA and prescribed me doxycycline for 3 months. I was still on reducing dose of steroids and had to come off slowly as been on for so long. Incidentally this is the worst thing to have if you have lyme. 2nd ELISAtest also neg, am waiting for results of Western Blot which I requested privately via The Doctors Laboratory. Since stopping steroids and doxy I am now getting symptoms again.

    thank goodness my ESR, inflammatory markers found in your blood which indicates infection or inflammation are high, otherwise sure would be labelled a nut case!

    am anxious and weepy, muscles twitching, burning feet, hands and joints. All can be signs of lyme, all tests for lupus etc neg. see rheumatologist on tues and if my blood test is neg again think he will be referring me to neurologist next. Have seen an Infection Disease Specialist and am also waiting for results of some co- infections such as babesia and Q fever! It is never ending. Have learnt you have to push for investigations, appointments and just to be taken seriously.

     

  • fat_fingers
    fat_fingers Chopper27

    Posted

    I should have said that the only time I felt better was when on doxycycline. I think I flared when weaning off steroids because my own immune system was able to try and fight infection. You can get  excellent advice and support from Lyme Disease Action. Push for a western blot blood test or you can pay from TDL for £225, GP has to request it so results go back to them.
    • Chopper27
      Chopper27 fat_fingers

      Posted

      thanks for all the great info, i just cant belive that in the space of 4 months i can feel so bad. my symtoms have been never ending but im going to go to my gp and demand a test and also the drug you suggested. the way im feeling it cant do any harm. cant believe theres so many people in the same position.
    • david59662
      david59662 Chopper27

      Posted

      Reading your replies you sound so like myself.

      I've been ill for nearly one year. Initially i was post viral fatigue. You might also want to test for Brucella.

      Emis Moderator comment: I have removed the company name and details as we do not allow repeated posting of these in the forums. If users wish to exchange details please use the Private Message service .

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Chopper27
      Chopper27 david59662

      Posted

      where did you buy doxycycline if you dont mind me asking?! 
    • david59662
      david59662 Chopper27

      Posted

      Hi mate,

      For some reason i cannot send you a private message ?

  • fat_fingers
    fat_fingers Chopper27

    Posted

    You can buy doxy from Lloyds pharmacy online for malaria protection if you are going abroad on holiday
    • caroline91964
      caroline91964 fat_fingers

      Posted

      Thanks! I've had a look at the Lloyds website. Can you only buy it for 7 days at a time? I can't seem to get an option for longer and would like to get a 28 day course. 
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