is this lyme ?

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Hi,

I have been diagnosed with chronic fatigue syndrome. Prior to Nov2013 i was a super fit marathon runnner and triathlete. Now walking more than a few miles is a challenge. I am 34. I want to hear from people who have had lyme disease (or other tick infections) and how they felt when they had it. How long did you have it and especially did your symptoms worsen over time ?

Did you have an odd sensation ALL THE TIME, especially more prevelant when sleeping that your heart was very weak and not beating the same when you were healthy? I have this as well as the fatigue. Constantly tell people i am 'zombified' they laugh, i have arguments of sorts with family members, they say it might be in my head, doctors have suggested anti-depressants. I constantly just don't feel right. I did 2 weeks of doxicycline 200mg/day with no major improvements as an experiement. But maybe i was'nt on it long enough. I figured i was in the Bulgarian outdoors in the mountains july 2013 and the highlands in August, these were the two things i did differently from any other year and where you can get a tick bite.

I would greatly appreciate any feedback.

Thanks for reading.

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12 Replies

  • Posted

    Hi David

    have you had blood test for lyme, if not would ask your GP to be tested as you have visited endemic areas. Did you have tick bite or rash? Not everyone has tick embedded or typical bulls eye rash. However ELISA blood test is not reliable. I have had two but both neg but I believe this is because I was diagnosed as reactive arthritis and prescribed steroids. I felt so ill I would have taken anything! Eventually persuaded my GP I had lyme as had also been to highlands, had nasty bite to leg and got all sorts of weird symptoms. Sweating, pain everywhere, swollen fingers, feet. Panic attacks, generally axiety and tearfulness. I have just completed 3 months of doxycycline and have improved but still not right. This all started a year ago. Suggest you contact Lyme Disease Action. They offer excellent advice and support. Do not be fobbed of with fibromyalgia if you strongly suspect lyme. Good luck

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    • Posted

      Hi FF, thanks for the reply and support. I have had ELISA test on NHS then realised they were unreliable, i then pushed for Western Blot and was told that was negative. I have no proof that test was carried out though which bothers me. Yes LDA have been amazingly helpful. I am likely going to get tested for other tick infections (awaiting anaplasma result this week)  because i just feel so darm wrong everyday and i see alot of lyme people talking about this. I keep telling people my heart is not right, like it is being suffoicated but i dn't mean like a heart attack as 24ECG said ok, more like an energetic strangle hold. Of course heavy fatigue , bloodshot eyes, light neurological problems. I've been doing some hardcore supplement routines i am wondering if this is keeping my head about the water.
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  • Posted

    Hi David, my husband is 34 and we have been battling Lymes for a year, we were lucky and got a diagnosis 4 weeks after the bite, (We wern't in the uk at the time so that helped!!) we knew it was a tick and when he got the rash, headache, fever, and mucle aches with neck pain we went straight for a blood test at the hosptal, my husband had 2 weeks of doxyxcyline and within 3 days of finishing symptoms came back, we couldn't get more treatment as the doctors said it couldn't be Lymes again, after 2 months of badgering our gp and threatening to buy antibiotics off e-bay they relented and gave us 400mg x 2 daily for 4 weeks, this did the trick and my husband was well for 8 months, he's a builder so has a very physical job, he had a 21 day course when the symptoms came back and after a horrendous herx (we thought it was back) he is feeling well again, energy returning and happier in himself.  This last time he was very depressed, worse than ever before, very moody and irritable, he would literally fall asleep when I was talking to him, he would sleep upward of 16 hours a day, this is the most horrendous disease, I know more about it now than all the gp's in our practice and the hospital 'specialist', if my husband gets sick again we are going to blast it with 600mg a day for 6-8 weeks, the bacteria has a 1 month growth cycle and you can only kill it off in it's growth phase so if the level of antibiotic is not sustained in this time it will come back, don't let people tell you your barking, we've had that, our gp tested my hubby was syphilis and even asked if we thought it could be Hiv, anything else but admit it is Lymes, don't let them fob you off, push for treatment get private tests if you need it to back up your case, we have spent hundreds on private blood tests, we looked at how they treat this in America and even for early onset they give 400mg for 6 weeks, keep looking on the internet, go to the doctors armed with info, our gp was not aware that is can re-cur and after we;d told him this he checked and said yes it actually does come back, if they won't give you antibiotics there are ways around getting it yourself, be strong, this has been a really testing time for my family but harder if your feeling on your own and no one beleives you.  My husband was biten in Loch Tey, Scotland, Bulgaria is also an option, looking back my husband said he started to feel unwell even 10 days after the bite, lower energy he had heart palpitations at his worst and lost the feeling in his hands, exertion seemed to make him far worse.  We are also working with a Nutritionist to repair the damage and to build his immune system.  You can get over this.  I'm happy to answer any more quenstions you might have.  Take care
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    • Posted

      wow ana, so greaful for your reply and offer of help. I mean i was a super fit athlete al my adult life and now i can barely leave the home and i constantly don't feel right, my body screams at my everyday YOU ARE ILL..YOU ARE ILL. I'd had to give up my job, two jobs in facts. I am living off benefits and while i do have some life savings, the effect this illness is ahving on me is extreme. I was given doxicycline for 2 weeks and i must admit i could say there was a minimal improvement. My GP thinks because tests have been negative and i did a 2 week course of doxy then i don't have tick infection. My GP has been really supportive so if i took what you said to him i am sure i could get a proper course of treatment. Yeah people are starting to think i am crazy, i'm like YOU FCKIN THINK I'D QUIT MY JOB, STOP MY GYM MEMBERSHIP, EVERYTHING I LOVE by CHOICE ?????

      I myself had been practising in naturopathy, doing well when all this happened now i am using strategies to help my body but i know if i do have tick infection only anti-biotics will deal with it properly. I am awaiting anaplasma results this week and i am going to do a second lyme test privately. Exertion makes me far worse also. I'm maintaining a vertical base at the moment, a lesser person i feel would be in a wheelchair and that scares me to death !!! I'll send you PM.

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    • Posted

      Hi David

      Our GP didn't want to admit it wsa Lymes, we had a test for Lymes antibodies which showed my husband had indeed had Lymes disease then we just had to convince him it was untreated Lymes.  As far as test done we've had loads, 7 in the uk all negative, we have had serology done this was negative.  Lyme disease asssociation were helpful, just tricky you have to wait a few days for a reply.  I'm looking for the information I found before, it was a 30 page document from 2008 which outlined the treatment of Lyme was by an american doctor who has since stopped practicing and now is into research, we're on holiday so can't look it up on my other pc.  Will keep looking.

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  • Posted

    Dear David, I was diagnosed with CFS 20 years ago - but CFS is only the label doctors give when they don't know the TRUE CAUSE of your disease.  You will not be able to help yourself until you find the CAUSE.  For me, my cause was Lyme disease, but the heart issues you describe were caused by a co-infection called Babesia.  I am not sure how tests for Babesia are done in the UK, because my Babesia diagnosis only came after I sent my blood to Germany. (specialises in testing for insect borne illness)   Seeking the right doctors and the right testing is key to getting help. Please quiz the Lyme community in the UK for recommendations. (Most doctors do not know enough). Babesia symptoms include the heart issues you mention, air hunger, feeling tight across the chest.  Babesia is a parasite that is transmitted by insects and could have come to you with or without the Lyme disease. Babesia lowers blood pressure and drops the heart rate in some patients. 
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    • Posted

      Thanks Rebecca, i have all those symtpoms with regards to Bebesia. I have found a UK lab that will test me for it. TDL pathology. LDA say i could get it on the NHS if i can persuade my GP. I will use what you said.

      I can't hel but this this is what i have. Thanks again.

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  • Posted

    That is so interesting Rebecca, I shall enquire regarding testing as I am in danger of being diagnosed with lupus( despite 2 neg tests). In that case they will want to give me immunosuppressants which will just about see me off if it is a bacterial infection. It is such a battle but feeling determined! Had nearly a year of hell, time I was sorted
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    • Posted

      Hi FF, i heard with the lab use their own testing methods the results are no accepted in the UK at least. You then must get treatement from them directly. ?
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  • Posted

    Hi David, have you had your thyroid tested?   Feeling really tired, lethargic and odd heart beats are a sign of underactive thyroid.   Its only a blood test needed.  I have been on meds for this for years and I know when my thyroid is going a bit haywire I feel tired, cant be bothered with anything, including hobbies and people.  My heart feels as if it is missing a beat and then it will feel like its done extra beats. 

    I am not an expert of Lyme Disease, I am still trying to get doctors to take me seriously but I am sure someone will come along with more help than I can give.

    take care

    Julie

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