Recognition and treatment with abnormal symptoms

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Hi,

Just thought I'd share my story and see if anyone else has had a similar experience as me. I know that my experience of Lyme is not the norm except for the struggle for treatment which seems too common.

About 5 years ago I became very ill with flu like symptoms, aching joints and fatigue. This lasted about 2 weeks but after that I started getting a severe pressure feeling In my head with occasional stabbing pain. I developed floaters in my eyes and felt zoned out and anxious. Felt like I had a brain tumour or something but after further analysis I this ruled this out. I'd already been to the doctors and found them less than helpful. Basically told me to come back in 2 weeks then come back in 2 weeks after that. I looked into it myself and saw Lymes disease as a possible cause. I became ill 13th Oct 2010 i knew this for sure and it clicked I had been camping 3 days before this and had picked up a few ticks. I live in the Lake District and have had many bites before and was under the impression that there would be a rash if there was lymes , I soon found out thus was not always the case. A simple google search will tell anyone this. Went to the doctors with a sense that something would be done. I was wrong he was ignorant of the rash and the disease in general. I got 'you don't have Lymes' it's probably a headache' and the famous 'come back in 2 weeks'. I gave up and just accepted it. I didn't have any other lymes symptoms so I thought he must be right.

The headaches continued as well as random nerve pains such as sciatica ,twitching muscles and severe migraines. This went on for nearly 2 years from the age of 19 to 21 . I couldn't concentrate and I struggled day after day and it destroyed my hopes of going to uni then one day it suddenly got better.I assumed I'd beaten it. I went back to collage at 21 and finally got to uni aged 23. After 3 years free at 24 and after first semester I started getting the familiar tingling in my head, this escalated into headaches the same as before but much worse, like being stabbed in the brain. I couldn't think or even speak, my girlfriend took me to A and E because I was basically blacking out she had to give all my info at the hospital. I was kept under observation and given strong pain killers. I went to the doctor and told him my previous suspicion of Lyme, I'd done research and found that it could come back. He said migraines and gave me pills. End of. I fell behind and struggled basically with living in general. I requested a new doctor and she at least have me blood tests- normal. She listened to me but was dubious of Lymes as I had beaten it before with no treatment and had no bodily symptoms, all neurological. I told her I was never Ill, in fact never had an infection in my entire life and I don't even know what a cold is really like. It sounds absurd but true. If anyone could beat it I could it just must have been lying dormant. She agreed to a Lymes test which was positive as I expected! After 5 years and even doubting myself I had finally proven something I had known nearly from the start.

I have been referred to a specialist in infectious diseases and have been put on doxycycline 100mg 2x a day for 14 days. Now I hope I can get better but I'm aware many people have had trouble with the anti-biotics regarding strength and efficiency. Any help would be appreciated and thank you for reading my story.

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19 Replies

  • Posted

    Hi. Thank you so much for sharing your story. Similar to my own and with the same response as you encountered with the doctors. Uneducated in lymes and unwilling to consider it. I am now scheduled to have blood taken next week and I'm shipping it to Germany for testing as I've given up on the UK doctors. I have all hopes for you that the antibiotics will now at last do the trick and you'll soon be on the road to recovery! 
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    • Posted

      Thanks! I went through 3 doctors, clearly something is not right. Hope your test goes well.
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  • Posted

    Like you my gp had no idea about Lyme, I had bite and classic rash. Was given cream told'dont know what is come back two week' next Dr thought had trapped nerve. Fortunately I was later diagnosed after three month, not the five years you have suffered.

    I've just finished course of antibiotics and not fully back to normal yet, have few issue with legs/wrist to sort.

    I'm no expert but think you may need more than two weeks treatment, you seem to have possible attitude which I believe is important.

    I wish you every good luck with your recovery

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  • Posted

    Hi, Thought I should respond with my current experience. may be of help. I was bitten 12yrs ago approx. finally diagnosed 3 weeks a go !! - god ive been ill. had similar head/nerve pains fatigue. wierd stuff on and off, sometimes seemed to feel better but always sucumming to a multitude of health problems - until 6 yrs ago started having inflammatory arthritis, chronic fatigue and severly ill .  I linked into Lyme approx 2 yrs ago after jaw surgery to improve inflamed joint and nerve pain which only made things worse. I recently found a uk private specialist who uses US labs for testing and I tested very positive.   ( UK tests came back the week before negative from a Hosp of tropical medicine).

    I have started on a 6 week course of doxycycline 200mg - 2x a day, PLUS a drug called artusenate ( 4 times a day, to break down the 'goo'/ or 'biofilm' barrier the lyme spirocetes create around themselves once in the body tissues for any length of time. This stuff, the 'biofilm' as talked about in the film Under Our Skin, is what makes the spirocete so difficult to treat and get at once the disease is chronic.  I have been told that this is just the beggining of treatment and it could take many months.

    The NHS UK hospital that got back the negative result still agreed to give me doxycycline for 1 month but only at 100mg 2 x a day without anything else. I was told by the private specialist that this dose is barely therapuetic and would not have any effect. You may wish to talk to your doctor about upping your doxy and including the artusenate . Good luck with all and hope you start to feel better.

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    • Posted

      hi hester3

      sounds like you`ve had a hard time -

      as so many of us have!

      I was also diagnosed by an american

      lab initially - the Bowen labs. Would you mind telling me where you`re tests were done - and who your private specialist is?

      im looking for some help in the uk. as usual my gp is not interested in exploring lyme as a diagnosis. im so ill now that im scared to be left alone on my more difficult days. and im not a scaredycat normally!

      thank you

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  • Posted

    Hi Eardstapa

    Thank you so much for your comments. Good grief I could cry with frustration for you and from knowing first hand what you have been through. I can honestly say I have never been so ill in all my life, at times suicidal from sheer desperation to escape the pain and constant feeling of being so very ill. I am still awaiting my results from the lab in Germany but they are espected sometime this week. If it's positive I will indeed take your advice with the medication treatments. Can you please let me have the name and location of your Lymes doctor in the UK? If you cannot put on here please email me privately. I'd be most grateful. Good luck to everyone out there who is enduring this wretched illness. 

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    • Posted

      of course I will give you the clinic'specialist information, but will not be able to tell you over this forum. any direct info like that and our mesages get blocked because its seen as advertising. how can I get your email?. or try googling Lyme disease specialist clinic in Hemel Hempstead!
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    • Posted

      PS. the aditional medicine I was prescribed to take along side the doxycyline in called 'artesunate'. I misspelt it in my earlier post.. Good luck
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    • Posted

      Hi Hester and Lemnia, I would also be interested in knowing where you went to in the UK as I have just been told by my GP today I won't be treated for Lymes, even though I had the bites, rash and now symptoms as my blood test came back negative.

      Good luck to everyone in this post on your treatments...

      PS you can PM each other on here and send links that way

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    • Posted

      Hi aromasammy

      Just read your post, my understanding is Dr can treat/diagnose on produce of rash espially if patient reports remembing a bite. I have seen this on nhs websites and was told this by the Dr on the ward I ended up on as a result of starting abx late. My gp did not know what rash was and lyme never mentioned, I was also unaware of it at the time. My symptoms got worse and ended up in hospital still have ongoing issue with recovery (legs stiff can hardly walk due to damage to nerves). I was lucky I got Posative result when tested by hosp.

      I believe there is a lack of understanding/acceptance of lyme by some Dr. Don't get me wrong I have respect for th just think this is a disease on which more education/awareness is needed.

      Can I advise you to join UK lyme discussion on FB, lot of knowledge available from people on it. Also lyme diseases action group (lda) very knowledgable and can provide you literature I believe to show Dr. I also believe they will speak to Dr on your behalf, was told this was the case. It's about awareness and education. If you do have lyme you need treatment, quite often people get false negative tests back. I hope you get the help you need

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    • Posted

      Hi Steve, thanks for your post here. I live in Madeira and at first was told you can't get Lyme Disease here, after I showed him a report on a study done on the island for Lymes which confirmed there is, he spoke to a specialist, which I was then referred to and said it was rare, with only a few reported cases recently. My doctor has admitted that he doesn't know much about the disease at all....if it is rare then, then this is no surprise...he is not very interested in learning about it either...seeing as my tests came back as negative and can't make a diagnosis on just symptoms.....he is hoping that the neurologist and rheumatologist will find the problem. Sitting in his office yesterday and going over the various symptoms, he threw his hands up in the air and said none of them make sense, they don't point to anything specific...I said that's why I hadn't seen a doctor as they didn't make sense to me either...but if he looked into Lymes then maybe we do have something that makes sense reminding him of the 1st diagnosis that I already had stage one from the bites and the rashes....we were going round in circles.

      I have joined the FB discussion group which as been very helpful, and sent an email to Lyme Disease action a few days ago, but haven't yet had a reply.

      I am very limited with time, when I go to the UK next month, so trying to get as much info now before I go, so that I don't end up running in circles over there.

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    • Posted

      Hi Eardstapa and all, 

      Just a quick update as I have my results back from the Lab. The results were a little beyond me and I asked the specialist doctor at the lab to please confirm what they meant. Here is his reply ....

      "Summarizing the lab test results, it is a multiple activity by the Borrelia b. and Chlamydia pneumoniae-Elispot and a low CD57 count (lower than 100/ul).

      By my laboratory interpretation without knowing anything about symptoms of Karin its a chronic multiple infection by Borrelia + Chl., symptoms should be longer than 1 year.

      Karin could fill out the Lyme and coinfections-checklist attached for her GP to correlate these results with her symptoms.

      Also, you ll find some information about Elispot + CD57.

      OK, can anyone advise if this does indeed indicate I have Lymes disease? I am going to try to find a good lymes doctor in the UK, as going to my GP has already proved beyond useless (If somebody can please tell me how I send a private message on here I'd be grateful as then I can get the name of the doctor you recommended in Hemel Hemstead I believe it was). All I know is I need help as I have never been so ill in all my life. 

      Any thoughts or guidance greatly appreciated. Thank you. 

       

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    • Posted

      Ps. All my symptoms fit exactly with those detailed in chronic Lyme. 
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    • Posted

      Looks to me like you have an unequivical big fat yes, and that also you have the bacteria that causes pneumonia. If your doctor ignores this result, then you must find another who won't.....good luck with your treatment, let us know how you get on.
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    • Posted

      Thank you. I just got off the phone to 'that' clinic in Hemel Hemstead. Earliest appointment I have managed to get is April 22nd. The only reason I was able to get in so quickly (usually would be a 5 month wait!) was because I told them I have blood results back from the Lab in Germany. When I mentioned which lab it was, their response was "OK then, that is the lab we use, so we can use those". I'm very glad I went ahead and forked out for these tests. Goodness, it's a hole in the pocket when you are no longer able to work through illness but I'm past caring now, I just want to get well. Will keep you posted. Good luck to all of you going through this dreadful illness. 
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    • Posted

      Dear Lemnia,

       Did you google 'Lyme disease Treatment in Hemel Hempstead'? I found this specialist private clinic by googling "finding treatment for Lyme disease', or some similar permutation of these words. I do not know how we can privately contact each other without our personal information going public. I so want to help you tho'. Try to google search again and let me know whatyou come up with. It took me couple of goes. I have never heard of Karin, but I too have multiple viral infections on top of the Lyme, apparently very common.  let me know ASAP IF YOU HAVE ANY LUCK FINDING CLINIC WITH ANOTHER SEARCH. hester3

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    • Posted

      PS. just seen your updated post!!. Great that you have found the clinic in Hemel Hempstead. We have spent a small fortune over many years and I haven't been able to work for 7 years. My provisioval consultation at Hemel and the multitude of tests done cost an eye watering £1200.  The screening was extensive and thorough, from which I was succesfully diagnosed, and now i've started treatment.  The financial outlay may be crippling, but I tell myself and my husband who continues to support me, that if I get well I can go back to work. A life without ones health is crippling in itself.  My GP was excited ( ??!) about my diagnosis, saying I was his first Lyme patient in 25 years. He will put any medication possible on NHS prescription for me, tho' I have already paid privately for the firsdt 6 weeks of treatment. Good luck and best wishes for the 22nd, I may even see you at the clinic. hester3
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    • Posted

      Hi Hester3

      Thanks so much for all your help. Yes I found the clinic and my appt is April 22nd. Interesting was that they said they use the same lab I used in Germany for blood testing of Lymes. I'm researching so much about Lymes and moreover specifically 'antibiotics vs natural treatment of Lymes'. Have you heard of 'The Cowden Protocol'? I tried it but have up after 2 months since was so ill and at the time didn't even know for certain I had Lymes. I'm thinking of starting it again, it's a 6 month course. Good luck to you and who knows we may well run into each other at Hemel!

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    • Posted

      Hi Hester

      Was just wondering how your treatment with the doxycyline and artesunate is going? How long are you going to be on it for? I have been researching and reading, I feel I'd be close to a PHD with the amount I have read this past year on chronic illness. Anyhow, my appointment is April 22nd at Hemel Hemstead. I have read that a lot of US doctors advise following abx treatment with natural antivirals. Hope you are doing well and feeling a little better with your treatment. 

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