MY ARTHRITIS WAS FOUND TO BE LYME DISEASE

joanne60
joanne60 Member Posts: 15
edited 3. Sep 2010, 04:02 in Living with Arthritis archive
My arthritis of 6 1/2 years is all gone now. I have no pain, no disability and am on no medication.

It took 5 doctors and 3 rheumatologists 4 years to diagnose me. It was a chance course of antibiotics which significantly improved my symptoms which led my GP to consider Lyme disease. I had attended the surgery at the time of bites, Bulls eye rashes, summer flu' and migrating arthralgias before a full blown chronic illness of arthritis and muscle weakness developed. There had been other cases treated at my surgery here in Guildford in the early stages of tick bite and rashes.
On long term antibiotics following International Lyme and Associated Diseases Society guidelines found at www.ilads.org I am fully recovered, I can cycle and garden again although for 3 1/2 years I was not able to walk up or down stairs properly and at my worst had difficulty standing and walking across a room.

Doctors are told that Lyme Disease is rare in the UK but HPA figures 2008 for England and Wales confirmed 827 cases of positive serology. Because patients rarely are tested by doctors the figures could be 10x this, according to Dr Ho Yen of HPA in Scotland and also CDC in USA.

Many of the patients I am in touch with have been ill far longer than I was and so there could be a significant number of people struggling with Lyme Disease and un diagnosed here in the UK.

What Doctors are not told
1.That research shows that blood tests can miss up to 50% of cases
2.Not everyone is aware of the sometimes poppy seed sized tick that bit them
3.That 40% of cases do not get the typical bulls eye rash but if you do you are infected and although your immune system may appear to cope it can sometimes be many years later that you get a full blown chronic infection.

HPA follow IDSA discredited guidelines which advocate only a short course of antibiotics but there is considerable evidence to support that for some of us long term antibiotics can restore health.
Lyme Disease is a spyrochetal illness like syphilis but far more complex. It is on a par in complexity and ability to evade the immune system with TB and Leprosy, who ever would consider treating any of those illnesses with just a couple of weeks antibiotics.

So while medicine argues about this disease do your own research and reading so that you can best find treatment that helps you.

Clearly not everyone with Arthritis will be as a result of Lyme Disease but at present doctors are just not considering it as a possible diagnosis. Instead patients are put on high doses of steroids for many years when just simple antibiotics could indeed be the answer.

There is evidence that Lyme Disease can be caught from a tick bite anywhere in the UK.
For more information see UK charity Lyme Disease Action at www.lymediseaseaction.org.uk

Comments

  • dolittle
    dolittle Member Posts: 240
    edited 30. Nov -1, 00:00
    Joanne,
    Thanks for your post. This is very, very interesting to me.

    I came back from abroad years ago with bulls eye sores on the backs of my legs. I didn't see what bit me. Everyone told me it was sand flies or the sun. However, our friends who live there say they have now suffered with these bites and have proved that they are caused by animal ticks. Apparently the local ferry to another island is being used to transport animals between the islands.

    I went to the doctor with my bites but he was completely disinterested. I have mentioned Lymes Disease to several medics and been scoffed at. I've had my condition for 10 years. They diagnosed RA after messing about for 3 years.

    I'm now going to do some digging because I'm sure there is something wrong and there is some sort of virus in my system.

    Thanks again Joanne.

    Do
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Dear Joanne

    Just a quick message to say I found your post very interesting indeed and am so pleased that after all this time you have got to the root of your symptoms ...

    Best wishes

    Marion
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Joanne,

    Its really good that they have at last worked out what is wrong there for you. I wish more doctors knew about Lyme's. Cus this is rural and I have sheep mine tested me for it long ago and have retested a fair bit since and always its been negative but I know from other people its not usual for the docs o be so one the ball.

    Its more common in certain areas of the UK but your info should mean all doctors are aware of it and do occasional test for it.

    I wonder if the main body should issue a directive actually? You take care ad thanks for the post. Cris
  • sharmaine
    sharmaine Member Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi

    I found your post very interesting. My son's flat backs onto a park which has a fair bit of wildlife: deers; badgers and foxes. The deers often come into his garden. He and my DIL check themselves after being in the garden and on a few occasions had to remove ticks from their legs. They've since purchased a spray (very pricey) which they spray in the garden every year. They too worry about Lymes disease.

    I'm so pleased you're feeling better and you were diagnosed and treated accordingly.

    My DIL tells me that there have been cases of Lymes disease in the Southeast of England.

    Sharmaine
  • joanne60
    joanne60 Member Posts: 15
    edited 30. Nov -1, 00:00
    dolittle wrote:
    Joanne,
    Thanks for your post. This is very, very interesting to me.

    I came back from abroad years ago with bulls eye sores on the backs of my legs. I didn't see what bit me. Everyone told me it was sand flies or the sun. However, our friends who live there say they have now suffered with these bites and have proved that they are caused by animal ticks. Apparently the local ferry to another island is being used to transport animals between the islands.

    I went to the doctor with my bites but he was completely disinterested. I have mentioned Lymes Disease to several medics and been scoffed at. I've had my condition for 10 years. They diagnosed RA after messing about for 3 years.

    I'm now going to do some digging because I'm sure there is something wrong and there is some sort of virus in my system.

    Thanks again Joanne.

    Do

    Thanks for your response, do check out the two links I suggested were you will be amazed at the denial going on here in the UK as well as USA and Europe. That is why it is so important to be informed.

    I never got a positive blood test but saw a specialist doctor privately who gave me a clinical diagnosis. I had attended the surgery at the times of bites and bulls eye rashes recorded on the computer. Even HPA following IDSA discredited guidelines accept that the bulls eye rash is the absolute hall mark for Lyme although not everybody gets this if they do they should be treated.

    Lyme is an insidious disease and for some can take years to fully develop with symptoms waxing and waning over time.

    There is so much information you need to know before tackling your GP, as to consultants they don't want to know, 'here take some more steroids' and if you persist they suggest you need to see a psychiatrist because you are imagining it!

    RA well actually JRA diagnosis, it was a cluster of cases in Old Lyme in Connecticut that led to finding Borrelia and naming it Lyme Disease although it had been known about in Europe a hundred years before.

    So what I am saying is yes even with a RA diagnosis people can find that it is Lyme and can improve or get completely well on antibiotics but taken long term at appropriate doses and ones suited to the condition see Burrascano guidelines in ILADS.

    If you want to pursue further then I would encourage you to join eurolyme at http://health.groups.yahoo.com/group/Eurolyme/
    Still continue with this forum because I am sure there is much useful information here over symptom management.

    When I got better I started a blog of my garden and decided to add links to Lyme disease sites, the information on lyme Disease became so much that I decided to start a blog on that. On the right hand side at the top are links to some great charities, research and videos. Much lower down is my story. Do have a look at
    http://lookingatlyme.blogspot.com/

    but do look at ILADS and Lyme Disease Action first nothing can replace the information they provide.

    If you want to contact me direct there is a link on my profile on my blog or contact me through Eurolyme.

    From what you have said I think there is a good chance that you may well find your arthritis is related to these bites and I would be very surprised if you do not find antibiotics not all but certain ones would help improve your symptoms.

    There has actually been research done over 50 years ago were patients with RA were finding antibiotics long term helped their condition see www.roadback.org It's probable that some of these patients were actually being treated unknowingly for a lyme Disease bacterial infection. In fact there was research done at Charing Cross hospital some years ago on the benefits of long term antibiotics for RA patients details can be found through Road back or possibly google.

    Some time back I did a post on my blog about a girl who had been diagnosed with JRA at aged 16 now 20 years later she has found it to be Lyme disease (privately) and on antibiotics is off all her other meds and improving significantly her consultant doesn't want to know and has discharged her! How blinkered can one get!

    So get informed and very good luck to you.
  • joanne60
    joanne60 Member Posts: 15
    edited 30. Nov -1, 00:00
    marion1952 wrote:
    Dear Joanne

    Just a quick message to say I found your post very interesting indeed and am so pleased that after all this time you have got to the root of your symptoms ...

    Best wishes

    Marion

    Thank you Marion yes it has been a truly amazing journey and will be years before medicine stops squabaling about the testing and the treatment so I know how lucky I have been to find a GP who was so forward thinking as well as a doctor who himself had Lyme Disease and became sick again after NHS IV antibiotics. He eventually went to USA for treatment and was so interested he now spends part of his week treating patients with Lyme disease privately he has also done several research papers on the subject

    I am sure in time more doctors will become knowledgeable, well infact already there are a growing number here in the UK mainly because their family members have been infected and struggled to get diagnosis and treatment resulting in having to travel to USA for treatment.

    So for now it is important that there is more awareness, clearly not everyone with arthritis has Lyme Disease but if there is a history of bites and rashes there is a very high chance it is connected.
  • joanne60
    joanne60 Member Posts: 15
    edited 30. Nov -1, 00:00
    skezier wrote:
    Hi Joanne,

    Its really good that they have at last worked out what is wrong there for you. I wish more doctors knew about Lyme's. Cus this is rural and I have sheep mine tested me for it long ago and have retested a fair bit since and always its been negative but I know from other people its not usual for the docs o be so one the ball.

    Its more common in certain areas of the UK but your info should mean all doctors are aware of it and do occasional test for it.

    I wonder if the main body should issue a directive actually? You take care ad thanks for the post. Cris

    Chris If you have sheep then they also carry ticks which can pass on Lyme Disease so I would strongly advise you to look into this further and do not be put off by a negative test there is much research showing problems over testing particularly in the later stages which HPA do not accept because they follow IDSA guidelines. Have a look at the presentations made to the iDSA review hearing found on www.ilads.org

    Interestingly in the recent review of those guidelines 4 out of 8 of the panel were not happy about the fact that the tests were considered infallible. Sadly because of the politics involved IDSA whitewashed over this issue and decided not to change the guidelines. You would find on reading the details of what is happening that money, insurance, research monies, patents over vaccines as well as reputations are all so involved and that is why our doctors are not informed of what is really going on.

    As to main body issuing a directive I am afaraid that the consultants are told we are all a load of crankies obsessed with taking antibiotics and misled by the internet. Well this cranky is now well as are many more who have found that antibiotics improved symptoms and symptoms deteriorated when they were reduced or stopped. I know placebo and anti inflammatory affect of some antibiotics both discounted by me , my GP and my specialist doctor.

    For now the best we have is awareness to help people protect themselves and consider if their symptoms could be from a tick bite sometimes years earlier, if so then read as much as possible and be your own best advocate.
  • joanne60
    joanne60 Member Posts: 15
    edited 30. Nov -1, 00:00
    sharmaine wrote:
    Hi

    I found your post very interesting. My son's flat backs onto a park which has a fair bit of wildlife: deers; badgers and foxes. The deers often come into his garden. He and my DIL check themselves after being in the garden and on a few occasions had to remove ticks from their legs. They've since purchased a spray (very pricey) which they spray in the garden every year. They too worry about Lymes disease.

    I'm so pleased you're feeling better and you were diagnosed and treated accordingly.

    My DIL tells me that there have been cases of Lymes disease in the Southeast of England.

    Sharmaine

    Thank you Sharmaine

    Yes where I live in Guildford I am in touch with about 15 to 20 other cases where people have developed chronic illness after lyme Disease infection, not all arthritic like mine as it can cause neurological symptoms and infact just about any symptom depending on where the infection goes, heart, brain, muscles etc.

    Thankfully my surgery are managing to pick up on cases both in the early satgse of tick bite and bulls eye rash and also like me in a chronic stage.

    Parts of Sussex and the New Forest are known endemic areas as are the London Parks, but in fact Lyme Disease can be caught throughout the UK.

    Joanne
  • dolittle
    dolittle Member Posts: 240
    edited 30. Nov -1, 00:00
    Hi again, Joanne. Thanks for the further info.

    It made me take note because a couple of years ago, when I was on Mtx, my husband got shingles and they immediately gave both of us anti-viral tablets. I took them for a week and didn't get any infection, but I noticed that I hadn't felt so well for years.

    The Chinese doctor I know, who is also an orthopaedic surgeon, said to me after I was diagnosed with RA 'If I was doing this I'd tell you the truth'. It stuck in my mind.

    He also said that if I had a flare-up it was because there was a virus in my system of some sort. I have noticed that if I do have a bad flare-up, I generally get a cold some something like that.

    Glad they've sorted you out. Keep well, and thanks.
    Dolittle
  • joanne60
    joanne60 Member Posts: 15
    edited 30. Nov -1, 00:00
    dolittle wrote:
    Hi again, Joanne. Thanks for the further info.

    It made me take note because a couple of years ago, when I was on Mtx, my husband got shingles and they immediately gave both of us anti-viral tablets. I took them for a week and didn't get any infection, but I noticed that I hadn't felt so well for years.

    The Chinese doctor I know, who is also an orthopaedic surgeon, said to me after I was diagnosed with RA 'If I was doing this I'd tell you the truth'. It stuck in my mind.

    He also said that if I had a flare-up it was because there was a virus in my system of some sort. I have noticed that if I do have a bad flare-up, I generally get a cold some something like that.

    Glad they've sorted you out. Keep well, and thanks.
    Dolittle

    Hi Do little
    Lyme disease is actually a bacterial infection although when bitten by a tcik there are quite likely other infections that can be passed on too.

    With any illness if our immune system is struggling to cope then we are more susceptible to other assaults such as virus'.

    Chinese medicine is sometimes used with treating Lyme Disease but generally as a support for the immune system most people would need antibiotics to get on top of a bacterial infection although again our immune systems are all different and people can be infected with Lyme disease and remain without symptoms for many years. However if something else compromises the immune system then that infection can at that point get out of control and a full blown illness develop.

    Best wishes Joanne
  • page35
    page35 Member Posts: 1,081
    edited 30. Nov -1, 00:00
    Hi Joanne
    very interesting post
    my friend has lymes and i have arthritis and we do get similar symptoms. she also found that the doctors didnt take her seriously, she had the head of the tick in her leg for days cos they said it would just come out and not to worry, then when she had symptoms of Lymes they didnt want to test her.
    eventually they did and she has it.
    i will pass the info on to her.
    Thanks
  • joanne60
    joanne60 Member Posts: 15
    edited 30. Nov -1, 00:00
    page35 wrote:
    Hi Joanne
    very interesting post
    my friend has lymes and i have arthritis and we do get similar symptoms. she also found that the doctors didnt take her seriously, she had the head of the tick in her leg for days cos they said it would just come out and not to worry, then when she had symptoms of Lymes they didnt want to test her.
    eventually they did and she has it.
    i will pass the info on to her.
    Thanks

    Hi Page
    Your friends experience is like more than 2000 others who have joined Eurolyme a chat line. Some did get treatment from the NHS but symptoms persisted after the short course of antibiotics. if your friend symptoms are similar to yours it is likely that she has progressed into a chronic stage and Burrascano would advise to remain on antibiotics until 2 months after all the symptoms have gone, for many that can take many months.

    I would encourage your friend to join Eurolyme and have a good look in their files in order to best advocate for herself.

    Best wishes to both of you.
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Lyme Disease post ... bumped up


    Marion
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Bumped up again for millymolly.

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