So much pain it's not fair

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In so much pain with my chest can't stand up for more than 30 minutes then have to sit back down pain is all around the back of my ribs and across the top front, have swallon throat and white tongue  had this for 6 weeks but not this bad went to docs 2 weeks ago he put me on anti fugal for it that was no good so went on Tuesday he put me on amoxicillin Whitch is what they always give u it is not having any affect I told him that I still think I have Lyme even though my test came back neg I told him that the nhs test is not very good and most people get a neg test he just said ohhh that's interesting u could tell he knows nothing about Lyme and will only go by what it says on his screen not been to work all week don't no what to do next can't carry on like this it's stupid thinking of buying some doxycycline online but not sure any help would be greatly received 

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10 Replies

  • Posted

    I .in the same boat ..All my test came back normal.There is another test that a lab here does that is much better that what Lab corp does . My test were negative but my symptoms say other wise..I have serve twitching and muscle aches and joint pain...fatigue I get no sleep...Just miserable!!!! Your not alone..Keep pushing these doctors...Dont give up!!!!!!
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    • Posted

      Thanks Angela going back to docs on Monday to ask for something else he just does not think I have Lyme because the test was neg with him it has to be in front of him in black & white I think for him to do anything have u had any chest problems or such like keep thinking its something worse then just a infection but he seams to think it's not so if it's not then maybe it's Lyme u can't win with this lot round and round we go 
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  • Posted

    Hi Garry,

    Sorry to hear you're feeling so poorly.

    I had Lyme Disease 18 months ago and experienced the severe pain you are describing, it's a horrible thing and makes you feel awful.

    Do you remember being bitten by a tick and did you have the bulls eye rash?

    When did you start getting symptoms?

    Did you know that it takes time for the body to start reacting to an infected tick bite and that you might get a negative result because your immune system hasn't kicked it properly yet?

    I suggest also that you get yourself informed and seek expert advice. I was supported by Lyme Disease Action who are a recognised source of information about all things Lyme Disease. They have up today info and also an email that you can contact them with. I found their advice invaluable when I was ill.

    As you have found out, GPs have limited knowledge about Lyme Disease and very often the information they are working with is hopelessly out of date. Try to keep your GP onside.

     

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    • Posted

      Hi Caroline thanks for the reply I got bitten in June but don't no if it was I tick I did not have the bullseye rash but did have quite a big red rash with like a cigarette burn in the middle that was there for about ten days three weeks later I started feeling unwell with abdominal pain (liver) had scans thay came back fine had lots of blood tests over the next 2 months but all was clear had all the normal symptoms flu like week ache all over eye pain blurred vision pain in my arms pain in my legs got a sore finger that will not heal had that for the entire time then got the flu about 12 weeks ago and it's stayed up at my chest u would think by putting all this together that my doc would think I have Lyme but don't seam so 
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    • Posted

      Hi Garry,

      Like you, I didn't have the classic shaped bullseye rash, but rather had a circular bruise like rash at the back of my knee.

      With all your symptoms, your GP should make a clinical diagnosis and put you on Doxycycline for a minimum period of 4 weeks. Lolly49 gave good advise.

      Get informed via Lyme Disease Action who will guide you on how to liaise with your GP and also you can encourage the GP to confer direct with Lyme Disease Action so he or she can get more informed themselves.

      Good luck!

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    • Posted

      Hi Garry and Caroline,

      you both mention a circular bruise like rash... guess what... I had a secondary rash like that on the back of my knee a few months after the bullseye rash. Apparently (according to a report mentioned by Lyme Disease UK who have a facebook page), this type of rash is typical of anaplasma.

      Garry, I suggest you research anaplasma phagocytophilum... your flu symptoms could be connected. Also check out Bartonella on Lyme Disease Action pages.

       

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    • Posted

      Hi Lolly,

      That's interesting. I read up on Anaplasma Phagocytophilum as I wasn't aware of it. 

      Regarding Garry's pain that he's experiencing. My own experience was that it took nearly four weeks for pain levels to subside. I made a daiily diary and graded the pain levels each day from 1-10. Also, I was unable to sleep, so I made a note of how many hours my sleep increased over the 4 weeks I was treated with Doxycycline.

      It's a long road to recovery, although with early and correct treatment, the pain should be alleviated with 4 weeks of antibiotics. However, to be realistic, my experience was that I continued to feel very tired for months afterwards and my memory was affected, which was concerning as I am a journalist and write for a living. 

      My concentration levels have improved greatly - it's 18 months since I was diagnosed with LD.

      Garry could look at his diet too. There's a lot of info online about how you can support the antibiotic treatment by adjusting your diet. I found it helpful.

      His first priority is to reduce the pain, so he needs to continue on antibiotic treatment.

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  • Posted

    Ask gp for full Lyme co-infection blood test to include anaplasma phago.(It goes to a special micro biology lab ie Porton Down, Wiltshire) 

    This is how I was diagnosed. I had lots of symptoms and a bulls eye rash actually inside a cellulitis rash/eruption... gp said it could be an allergy and gave me two weeks anti biotics. All my blood tests were negative until they checked for co infections and found anaplasma phago positive.

    Its unlikely you'll get a positive Lyme/borrelia result if you have been inappropriately treated with anti biotics. Its called an abbrogated response. (Even if you have had anti biotics for something else, the Lyme/borrelia can still react to them)

    Basically borrelia are bacterial parasites that can hide if you are only partially treated and the borrelia not fully eradicated.

    6 weeks antibiotocs (such as doxycyline) should be prescribed as soon as you are bitten as borrelia has a life cycle of 4 weeks and is quite happy to multiply... gotta kill the babies too. Obviously gp would need to prescribe a longer course if it has been left untreated.

    The 2 weeks recommended by the NHS is insufficient, thereby causing the borrelia to hide in your system. 

    Also, I suggest you contact Lyme Disease Action as they will give you support and advise your gp if you wish. 

    Hope you get somewhere quickly with this. In the meantime, try to clean up your diet in order to support your immune system. Try to keep it natural and, if you can, cut out alcohol, sugars, chemicals and processed foods but don't go mad with vitamins and supplements... your body can only assimilate a certain amount and a properly balanced diet should provide what you need.

     

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  • Posted

    hi garry. i havent been on this forum for several months but saw your post and thought id respond now. hope you are actually thro' the above, but just incase -.

    I was diagnosed with chronic Lyme disease in Jan 2105, following serious health problems for years.i had negative tests at The Hospital of tropical medicine on London by a top parasitologist, to no avail. - but  then I found somewhere that treats Lyme and its co-infactions properly. Therte is a private specialist hospital in Hemel Hemptead that does the proper tests. Google something like 'Lyme treatment  hopsital in Hemel H' and it will come up. 

    Following a year and a half of treatment I am still very unwell, but trying to stay positive.  I have been told it could take several years to feel better. Last yer was a combination of oral and IV antibiotics, and  pulsed regimins of many  medicines and suppliments, this year I am purely on a herbal regimin and Allicin.

     Good luck with eerything. Hester

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    • Posted

      Hi Hester thanks for the reply I don't think I would be able to afford the private route I imagine it is very expensive, I still don't know if I have Lyme  or not NHS test was neg so the doc just treated me for what I had at the time , after three months of hell started to feel a bit better thought oh great maybe it was not Lyme but then after about 4 or 5 weeks of feeling ok I got flu felt really bad but thought ok it's just flu but when the flu got better I then had lots of chest pain burning in the centre of chest and pain going under my armpit and round the back that lasted for three months I had X Ray and bloods done all clear I was treated for possible hurnia with lansoprazole in February which I am still taking then  started to feel better all good then I thought or maybe not 7 weeks ago I started having bowel problems like tummy pain a lot of trapped wind a lot of pain around the rib cage doc checked me and said he thinks I have IBS did not give me anything for it so I've just been taking painkillers and peppermint capsules but they don't do much so still in pain everyday so so far I still don't no if I just have been unlucky and been having different things wrong or i do have Lymes strange that I have not had anything wrong with me for 20 years then after I had a bite on my arm all this in 10 months but maybe it's just coincidence thanks for the reply hope u r well or getting there at least 
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