PMR and Lyme disease ?

[leajamesi]

Hello, do you have any idea of a correlation between PMR and Lyme disease?

Following tick bites, can it cause PMR ?

Doctors do not give any answers and my GP said no reason known what causes PMR.

[Ozark]

To the best of my knowledge, there is no association between Lyme disease and PMR. PMR is an autoimmune disease and Lyme disease is caused by a bacterium. So at least in my view they are unrelated.

[piglette]

Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks, some of the symptoms to PMR are similar, but I cannot think that there is any other correlation.

[GOOD_GRIEF]

While you can have both PMR and Lyme's disease, neither one is the cause of the other. A correlation would surly have been found by now, if it existed. Lyme's tests are routinely given during the diagnostic period in areas where Lyme's occurs, mainly because so many symptoms are similar.

I have a Lyme's test every fall for this reason. If I manage to get bitten by a Lyme's tick, I don't want anyone mistakenly assuming that what I am experiencing is a flare. Lyme's is treatable and curable at early stages. Left untreated for too long, Lyme's is devastating. My insurance company tries to reject the claim for the test, then my doctor gets on the phone and gives 'em h_ll. And then they pay.

[Bronni]

Hi lea. I had Lyme disease 15 yrs ago and have wondered if there was any correlation. When I first got pmr, I thought maybe it was Lyme again ( as the Lyme spirochete never leaves your body - it lies dormant) - so I took a course of antibiotics (doxycycline) with no effect, then prednisone which worked well. Maybe it’s possible that the Lyme interferes with immune function, leaving you susceptible to an auto immune disorder? I’ve never heard of a connection, though.

[leajamesi in reply to Bronni]

I think the same for me, eventhoug 10 years ago one doctor said that I have Lyme and 5 years after another said you do not have Lyme.....So when PMR started it took my GP longtime to diagnose it and after the Prednisone helped in 2 days but it is a long way. I though that Lyme may weaken immune system so that PMR can develop.....

[leajamesi in reply to Bronni]

what is terrible when you have Lyme with all different symptoms and the doctors tell you that you do not have it because the Elise test was negative. At the end he said it's in your head and go see the psychiatrist ! At least with PMR blood tests and symptoms were speaking ...... Good luck to you also. Lea

[Bronni in reply to leajamesi]

I never had a positive test for Lyme. The test is/was very unreliable. So I had awful pain in neck, shoulders for weeks and then one side of my face became paralyzed! I thought I was having a stroke, so I went to my local, very small hospital ( I live on an island!). The doctor was very well educated in Lyme disease and recognized it straight away. As with pmr, the correct medications worked immediately and completely. I guess it could be worse! 🙂

[leajamesi in reply to Bronni]

The same experience except that here in Switzerland the doctors are not very well trained for Lyme, I did not have medication. What is difficult with PMR is prednisone and its side effects especially fatigue, lack of energy, insomnia. It has affected my social life because I can not go out at night ... family and friends have trouble to understand because it can not be seen. But let's hope it gets better with time .....

[PMRpro Ambassador in reply to leajamesi]

Often if you have a siesta in the early afternoon you can survive until a reasonable time in the evening - by resting before you get to exhaustion you get more up-time altogether. Try it.

[leajamesi in reply to PMRpro]

Hihihi I am already siesting little bit afternoon but can not sleep, but in some exceptional situations I must go out at night but then around 10 Pm I am OUT and fighting with myself...to stay...before I was going out so often. It will need time to recover I think. Thank you for your advise and help.

[PMRpro Ambassador in reply to leajamesi]

I've been heading for bed at 10pm for years - but I can now manage the odd late night...

[leajamesi in reply to PMRpro]

I will try .....

[Bronni in reply to leajamesi]

Yes, as pmrpro says, you have to pace yourself with lots of naps. But, to be honest, I think I might be done by 10pm, even I I didn’t have pmr 😁

[PMRpro Ambassador]

There is no known direct correlation between Lyme disease and the PMR we talk about here. However, PMR is not the disease, it is the name given to the symptoms of an underlying disorder, in our case an autoimmune vasculitis, but Lyme's can cause very similar symptoms and, if it is a possibility because of where you live or go on holiday then Lyme's should be ruled out - as Good Grief says.

However - as it is an infection it is perfectly possible that having had Lyme's in the past may have contributed to developing PMR later. Most autoimmune disease is felt to be a long term exposure of the immune system to various things that stress it, which can be environmental, chemical, infection, trauma, emotional or physical stress of any sort and so on. Eventually the immune system is exposed to one too many and it breaks down and flips out, unable to recognise the body as self it attacks body tissues and causes damage and inflammation. What you are diagnosed with depends on which set of signs and symptoms you display.

[Linny3 in reply to PMRpro]

That is exactly what my dr. told me. She had me tested to make sure we weren't dealing with a couple of different disorders. Luckily I did not have it or ever had it.

[leajamesi in reply to PMRpro]

Hello, thank you so much for your explanation. I see you are a grand expert, it is exactly what I think, Lyme weakened my immune system and opened the door for developping PMR...It took few years. .....But we must be positive and patient.....

[Joblow in reply to PMRpro]

Well, that is the best possible explanation I have heard of. My first episode of PMR was 4 days after getting a shingles vaccine (live virus at that time) 9 years ago when I turned 60; I was treated with prednisone x 1 year. Now I am experiencing PMR again, having had absolutely no problems for 9 years. Obviously something or somethings triggered my immune system to go into overdrive again. I would be curious to know how many people with PMR remember a possible preceding event or illness.

[PMRpro Ambassador in reply to Joblow]

Most of them probably - loads of people will insist it was stress, and stress affects the immune system. I say there wasn't for me, not immediately preceding at least but over the perhaps 15 years before there had been a range of stressful events, called life.

[Oumaof2]

Hello, I lived in Southern Africa for 27 years... I contracted ‘Tick Bite Fever’ aged 19 ..... I was given Antibiotics and signed off work for 1 week! My energy levels never returned to my prior levels.... Last year I was diagnosed with PMR.... A result of a stubborn chest infection? and 5 courses of anti bi’s... A time difference between the two diagnoses of 52 years!... After reading the very informative comments, I’m now wondering if there is a link? I’m so grateful for Prednisolone, but, finding it very difficult reducing below 10mg! I’ve been trying for the past four weeks on 7mg and have had a very painful couple of weeks.... Tried to ride it out until yesterday, I felt really low.... Back up to 12mg today and already feel so much better! Apart from weight gain and some hair thinning, I don’t suffer any side effects.... I’m so pleased I have found this forum.... People don’t understand PMR.... I hadn’t heard of it prior to February last year!

[leajamesi in reply to Oumaof2]

The same as me, I did not know about it, and now since 18 months I have Prednisone that I hate but it is very long to lower it, it takes time ...like - 1mg per month if the results are good in the blood. I go up and now since under 10mg now....very very slow and tirening process....All the best to you. Lea

[leajamesi in reply to Oumaof2]

I am also very glad to found this forum, so many interesting informations that concern us and a lot of reading. I ordered the book of Kate but it did not arrived yet.....Good luck.

[Oumaof2]

Hi leajamesi.... Sorry for replying delay ... Had a rough week... The replies and advice I've had are so helpful.... I can see now, taper was too much too soon... I'm going to try increasing by 1mg and find where my "happy" tolerance is.... I think I'm going to enjoy this forum.... Thanks for tips everyone... Take care Lea.... Let me know about Kate's book when it arrives....

[leajamesi in reply to Oumaof2]

Hello hello, I received Kate's book 10 days ago , very very interesting and rich but then I got really sick with a bad pneumonia, just finished antibiotics yesterday and still feeling KO. I recommend the book that synthetise very well PMR. For 3 days I just forgot prednisone,impossible to swallow anything but now I take again and will also try to find the comfortable level...All the best .Lea

[Oumaof2]

Hi Lea... So sorry you've been so ill... I hope anti biotics are helping.... Hopefully you get back to your comfortable level very soon...Just take one day at a time. . Your energy levels will take time to build up again ... I've had aches,stiffness and feeling so weary... Upped Prednisone by 1mg ( not much change) and another mg and slowly starting to feel more energised .. I've been making myself go walking.... We are having amazing Springlike weather! It does lift the spirits... Some days easier than others... I'm going to order a copy of Kate's book .. Thank you for your thoughts on the book.... Take care and remember, one day at a time.... Hope you feel stronger soon ... All the best... Lena x

[leajamesi in reply to Oumaof2]

Thank you so much for your warm message. It makes feel good and as you say one day at a time. I will also appreciate go walking in the forest with my little dogs but not in shape yet, they still have a big garden to play. Before PMR I used to walk 3 hours a day in the forest.....but it is finished now.... I am trying to appreciate what I can do in the meantime and specially to be patient...... Take care also and give us each other news....Lea

[Bronni]

Hi Lea, Bronni here again. I wondered if you had heard of the klinik st George in Germany. A young woman I know from my area in Massachusetts ( high incidence of Lyme disease) with crippling Lyme, went there a year ago and has been symptom free since. They use hyperthermic treatments in an attempt to kill the bacteria. I have no idea if this is a valid treatment or ‘ snake oil’, but she claims it worked for her. I also read of hypo/hyperthermic treatments being useful in autoimmune diseases. It would be interesting to know if anyone else has any info regarding this.

[leajamesi in reply to Bronni]

Thank you Bronni for these precious informations, I will investigate to find out more infos....It is better to open all the doors to find solutions.... I was recommended by a doctor in Liechtenstein to try a new dietary supplement to immune balance , I just received it today from the US and I will try it. I will share if it works but I am open minded,,,, Have a good evening. Lea

[Bronni in reply to leajamesi]

Yes, what works for one person, may not work for someone else, but it’s worth trying. Good luck!

[leajamesi in reply to Bronni]

I will try.....maybe a miracle will happen....

[phebamom]

Yes I do. I had tick bite in 1996. That is when all health issues began. I have been sick with this pmr/gca type illness since that time. Diagnosed at Mayo with GCA 3 years ago. There is more than one tick borne illness where I live, Missouri. Also, being re-bit and re-infected makes things really bad. My dog had Ehrlichiosis (tick-borne disease enemic here) and eventually died from it in spite of antibiotics. I live on a farm, and in spite of trying to avoid them, ticks are constantly brought into the house. I pulled one out of my naval a few weeks ago.

I had a positive western blot, yet conventional doctors refused to acknowledge that Lyme was making me sick.

I tried Actemra for this disease and it caused neuropathy, worsened bronchitis, and just generally made me feel like I was dying.

After 22 years it is obvious to me that prednisone alone can't help me.

I am seeing the Lyme specialist in two weeks. I will report back on my treatments and outcome.

But, in my case, yes, Lyme, along with emotional trauma, played a huge role in my pmr/gca.