Date: 07.11.2015
From: Anne22
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Subject: Arthritis from Lyme Disease
I was diagnosed with Psoriatic Arthritis but now being tested for Lyme Disease as I had a history of tick bite in the North York Moors. Has anyone heard of getting arthritis from a bite ? I have symptoms now from 4 years of steroids ... cataracts, osteoporosis, huge face, a beard to challenge zz top !! Feel a bit fed up that my diagnosis might have been wrong as Ive held on to "Knowing" what was wrong. Tried to read up about Lyme but its all a bit woolly :(
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Date: 08.11.2015
From: Florence
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Subject: Re: Arthritis from Lyme Disease
Where are you being tested ? If its an NHS test sent to Porton Down, the results are notoriously inaccurate and it doesn't detect co infections transmitted through the tick.
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Date: 08.11.2015
From: sleek fox
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Subject: Re: Arthritis from Lyme Disease
Where else can she go to get tested, in that case, Florence? I was tested for Lyme when I first got ill as I'd been in areas where there were ticks but nothing showed up. Have you checked up on the other symptoms, Anne? Also, I read that the tests aren't always conclusive and that can make it difficult to diagnose but that is the same with inflammatory arthritis.
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Date: 08.11.2015
From: Florence
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Subject: Re: Arthritis from Lyme Disease
Anne I recommend you take a look at Lyme disease UK or lymediseaseuk.com. There are people on that forum who can give you some really helpful and up to date information. There are several clinics here in the UK that can test you for co infections, or you can order a kit from Igenex. Very expensive as its sent abroad through Fed Ex.
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Date: 12.12.2015
From: Anne22
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Subject: Re: Arthritis from Lyme Disease
Thanks for that, I was tested at the RVI in Newcastle but they did say they were sending the bloods off to the central testing unit so it could be anywhere. I went private to a RHeumatologist in Washington after two others made hugely different diagnosis - psoriatic arthritis because my mother had arthritis .. but I dont know my mother so not sure how they got this info, the other said I had fibromyalgia ... both disagree with the other. It was the private consultant who insisted I be tested for Lyme and he made the referral. RVI consultant did tell me that the testing in the UK is very unreliable for Lyme but that they would give it a go because of my history of being bit. Just waiting for the results but I might give the Igenex a try too. Thanks for your advice and help x
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Date: 12.12.2015
From: lois
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Subject: Re: Arthritis from Lyme Disease
Hi Anne22, The trouble with all of these diseases is they are all hard to pin point. Where did they get the information on your Mum? I would definitely ask them as it sounds odd that they would have that information without you telling them that. Can I ask why you have been seeing different hospital consultants. This could be why all the confusion is happening. Just my thoughts sticking with one hospital might be better then they can rule out by elimination each diagnoses. It is a long haul and a lot of tests to get a correct diagnoses. Mine took years. Now I have a lovely consultant and nurse that looks after me I can't praise the NHS enough. Good luck with it all and I hope they get to the bottom of it all soon. Take care.
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Date: 12.12.2015
From: Anne22
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Subject: Re: Arthritis from Lyme Disease
Hi Lois There was a huge amount of confusion as there seems to be someone else with exactly the same name as me. So I assume they never had any info on my own mother ... would be a miracle if they did !! I only found out 3 years down the line that my diagnosis was based on this info after my GP read out a historical letter. There was a bit of a mix up with my prescription too - I was told I was not to have Mtx and Enbrel because of an allergic reaction but then my prescription came through with Mtx and Enbrel. Think the worst bit was turning up twice for appointments that had been cancelled but no notification and then the last appointment everyone had been sent the same time so there was crowds waiting to be seen ... Im laughing now but I wsnt then as I sat around for 3 hours as I hadnt been seen for 14 months due to the cancelled ones. It was all very chaotic. My GP had a bit of a fall out with the rhematologist because of the conflicting info and I was given a referral for a second opinion ... was just a one off appointment but this confused everything with the fibromyalgia diagnosis. I got really worn down and paid to go private for one appointment just so I could sit and talk through everything that had happened over the past 4 years. It cost a bit but was worth it .. I could never knock the NHS, there are good and not so good everywhere, just my experiences have been a bit odd and a bit frustrating too at times. The private rheumy spent a good hour looking back over my medical notes (because he had the time to) and picked up the bite and the flu/swelling of joints shortly after. Might not be that but worth trying ... Thanks you for replying and hope you are keeping well too x
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Date: 12.12.2015
From: lois
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Subject: Re: Arthritis from Lyme Disease
Hi Anne, what a mix up. No wonder you are frustrated with it all. Lets hope you get sorted out now. 4 years is a long time. I got sorted out when I moved and joined a new Drs practice. I have a great GP that sent me for new tests and at last a decision was made and my Treatment began about three months ago. Take care and let us know how you get on. Remember if you ever want to have a moan or a rant or just a chat we are here for you.XX
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Date: 13.12.2015
From: Florence
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Subject: Re: Arthritis from Lyme Disease
Hi Anne, there is an interesting article published today, in the Mail on Sunday online, about John Caudwells struggle with Lyme. In it, there is a reference to the Armin Shwarzbach clinic in Germany. They too test for all co infections. There is a clinic in Harley street that uses Armin labs, I did have the telephone number and website address but have mislaid it ,which is annoying as they give a full price list of each individual test. I am sure if you type in Armin labs something will pop up. Just like Igenex, they can send you a kit to take to your GP for the blood draw and then its sent through Fed Ex to Germany. Probably better than Igenex, as they are based in the US. Some people I know have found it simpler and cheaper to travel to Germany, and then your advised by the consultant as to what tests are appropriate. The only downer is , you need deep pockets, as these tests are not cheap.
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Date: 13.12.2015
From: Anne22
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Subject: Re: Arthritis from Lyme Disease
Thank you so much for all of that info Florence, I am going to read the article now and will look up the clinic in Germany ... And thank you too Lois, sometimes I do get really fed up and its so good to know there are people who will give their time to reply xx
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Date: 14.12.2015
From: Florence
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Subject: Re: Arthritis from Lyme Disease
Anne, found the contact details. The website is AONM (Academy Of Nutritional Medicine), The address ; First Floor, Suite 8, 22 Harley Street, London. Telephone, 0331 210 305
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Date: 14.12.2015
From: lois
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Subject: Re: Arthritis from Lyme Disease
Any time Anne. Take care xx
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