PMR and Lyme disease

[987460]

In JULY STarted with neck pain, but nothing so terrible. A few weeks later my both arms and back of my both legs began to ache. A few days later I couldn't get out of bed the stiffness and pain was unbelievable. Went to my Internest ànd he sent me for blood work and exrays of neck and back, since I have had back problems for many years. Somehow I knew these pains were not the same as I had with my back. X-rays showed all my same problems, scoliosis, disc problems, arthritis, also my blood work came out fine. Dr put me on an 8 day regimes of predict. And slowing weaning off. Felt good and started again. Cousin of mine has Polymyalgia, which I had never heard of before she had it. Her advice was to see a Rheumotologist, which I did. She said all my symptoms seem to be PmR . She put me on 10 mg. Pred, took some of the stiffness away, but in the morning same symtoms. Increased to 20 mg. feeling much better. My blood work showed a high sed rate 58, low iron and a possibility of Lymes Disease. Out of 10 bands, 3 showed positive. She said it could be a false positive, so more blood was taken and it was sent to a lab in California, results will take 2 to 3 weeks. I cannot believe how many people have this PMR. I hope this site will be helpful to me.

[Celtic PMRGCAuk volunteer]

I'm glad that the increase to 20mg Prednisolone has so improved your symptoms. Hopefully the repeat blood tests will show an improvement in your ESR (Sed Rate), and that along with a continuing improvement in your symptoms should help

towards a definitive diagnosis if PMR. Lymes Disease is a different kettle of fish although producing similar symptoms, but needs antibiotics to treat and cure it. See my earlier reply to Robnc.

[PMRpro Ambassador]

Same here - I also replied to Robnc.

How interesting that suddenly we have two people with a diagnostic choice between PMR and Lyme!

[987460 in reply to PMRpro]

I was shocked to hear that I may have Lymes Disease, since I never had any bite marks, bull nose or any irritations to indicate anything bit me. The blood results show 3 positives out of 10. Dr taking extra precautions to be sure, sometimes it could be a false positive. I am hoping it is

[PMRpro Ambassador in reply to 987460]

I wasn't paying full attention as it was a celebrity spot in Sky News but the founder of Phones4U AND HIS ENTIRE FAMILY have developed Lyme's Disease and tested positive. It isn't clear how, some don't live anywhere where Lyme's is thought to be a problem and they don't all live close to each other. There seem to be some unanswered questions about transmission as there are multiple cases wordwide.

However - there are people with PMR who have said they feel better after a course of antibiotics for something else and a colleague's wife developed "PMR" which required a high dose of pred to manage and she developed a lot of side effects. He is a doctor and, together with the rheumatology department in Budapest, they devised a longer term therapy with antibiotics which cleared all her symptoms in about a year. Since the bullseye rash doesn't appear in about a third of cases - how many PMR cases are actually Lyme's? There is little awareness of it outside areas where the ticks are found to be infected but if there is another means of transmission...?

[susanspurs]

Hi I was diagnosed with PMR May 2014 but had symptoms for nine months before. Have been yoyoing on Prednisolone since then. I'm atypical so nothing raised in my bloods. I also have quite a lot of other neurological symptoms but a CT brain scan was normal. My PMR is worse in my lower half - back, hips and knees and can often get worse during the day. I've often wondered if the diagnosis was correct. Before I was put on Prednisolone I had a PET scan and lots of other tests to rule out anything else. I responded really well to 25mg and felt I could fly - it was wonderful. But then started getting side effects. I'm down to 7mg now and symptoms coming back. In fact they've been around from about 15mg. So a long story - sorry. About 18 years ago I was bitten by a tick in Latvia. I didn't know anything about Lyme Disease until a few months ago when I somehow made the connection. Most of my symptoms match including a major one - second degree heart block and I had a pacemaker fitted 5 years ago. Lyme Disease can attack major organs. I've had to have bowel surgery too. I persuaded the neurologist who did the brain scan to give me a blood test for Lyme but it can back negative. I've read that Lyme testing in this country is extremely unreliable with many false negatives and most doctors are really not interested. I saw the neurologist raise his eyebrows at the mention of Lyme Disease. I felt he thought I was a hyperchondriac - I'm 69 and was a reasonably fit walker and carer before all this happened. If I do have Lyme, steroids are bad as they suppress the immune system so the Lyme bacteria takes hold even more. I also wondered if the steroids could affect the blood test? So I'm not sure what to do next. Help. Sue

p.s amazing website with so much help - thanks to everyone.

[PMRpro Ambassador in reply to susanspurs]

If you still are having low back and leg problems I'd suggest you have nothing to lose by booking yourself 3 sessions of Bowen therapy - if you don't believe me put a question out on the forum for how other people have got on. A lady on another forum has said today she has had 3 sessions and ALL pain has gone! Not the PMR pain I imagine but getting rid of the add-ons is a major advantage.

[susanspurs]

Many thanks PMRpro for the advice. I'll read the posts and look into it.