PMR and Lyme Disease diagnosis.
Posted , 13 users are following.
i got PMR diagnosis s year ago i started at 15 mg and taper has not gone like I thought it would lol
i am on 10 mg and getting lower hasnt gone great I still have pain and stiffness in shoulders, arms, neck most mornings , even with split dose
less fatigue but still burning eyes and fatigue but later afternoon most days
We have always camped , hiked and do wildlife photography all of this has been shelved for a year!
We also have 3 dogs . I was diagnosed on the 23 rd of December with lyme disease
i see ND ( naturopath) tomorrow and she is recommending antibiotic treatment
I am concerned that my family doc will want to stop the prednisone
Has anyone experienced LYME and PMR
Any ideas , thoughts or suggestions welcomed
thank you in advance
Shannon Taylor
0 likes, 23 replies
bob73443 shannon76840
Posted
if lyme is even remotely suspected, get it treated immediately. doxycycline is the preferred antibiotic. if not treated immediately you'll be in for a lifetime of agony..
even if your doc suspends prednisone temporarily TREAT THE LYME.
I'm speaking from experience. my wife is as long term lyme sufferer because she did not get immediate treatment. I'm telling you, if I had a choice between suffering from PMR or lyme, I'd take PMR any day.
shannon76840 bob73443
Posted
i was treated about 22 years ago for 7-10 days and ELIZA screen came back negative if in fact from then it id chronic PCR DOES SHOW definite borrelia but the comment that scares me is my immune system is to weak for the WESTERN BLOT to respond
i do see the doc tomorrow and it is recommended to proceed with treatment
my symptoms have been pain shoulders, hips, knees, necks, arms
as well overwhelming fatigue, depression, poor memory, i do believe that I HAVE PMR Prednisone is contraindicated with LYME
I am not well educated about lyme but the uncertainty for chronic and testing is overwhelming
Twopies shannon76840
Posted
can you please explain how you can distinguish lyme disease from your pmr? wishing you the best!
shannon76840 Twopies
Posted
i certainly cannot tell you much other than the typical pmr symptoms
it was recommended by a friend to do this testing i am in Canada and had to pay 500 dollars for testing in CALIFORNIA
bob73443 shannon76840
Posted
there are blood tests that confirm the presence of lyme- related infections.
shannon76840 bob73443
Posted
i did have PCR for borrelia it was positive, and IgG AND IgM WESTERNBLOT
TheRaven shannon76840
Posted
Prior to my diagnosis for PMR, the doctor initially thought I might have Lyme. As I'm sure you're aware, tests for Lyme are notoriously unreliable so I was almost automatically put on the antibiotics for 3 weeks with zero improvement and later was finally diagnosed with PMR.
I'd highly doubt the doctor will stop the prednisone because of the length of time you've been on it, if for no other reason. I would expect your doctor would be aware that you can't just stop taking pred after being on it for a year. That can be very dangerous and extremely painful. You'll have to continue your reduction schedule no matter what.
missmagwumps TheRaven
Posted
I so agree with TheRaven - you cannot just stop pred despite the diagnosis of Lymes ....I know to my cost as went from 10mg to 1mg in error and boy did I pay for it....keep strong...x
shannon76840 TheRaven
Posted
I agree whole heartedly! But here in Canada these docs think one year is too longI did stop once according to directions and in 30 hours I was in a crisis. That is when I found this site. I hate that I have to fight toi get treatment as if I enjoy prednisone. It is my friend. I actually went to a naturopath and will travel a long distance 3 plus hours for Lyme treatment. I may not share this with my FMD because he will say HOGWASH.
I really despise the lack of education around PMR and Lyme disease in the medical field. I myself am a medical provider and I am not afraid to listen to the patient and get all the info available.
shannon76840 missmagwumps
Posted
thank you! Self advocate here and been there done that with a reduction.
patricia43291 shannon76840
Posted
Shannon,
I was diagnosed with PMR and Lyme's at the same time, last March. All blood tests showed I had both, although no one can say when I got the Lyme's. I started the treatment for both at the same time, ( 3 weeks of doxycycline and 20 mg of pred). Oh, yes, I was also diagnosed with osteoporosis at the same time, it was a great spring.
I have not gotten any definitive word from any medical professional on a connection between PMR and Lyme's, but I believe there is one.
Anhaga patricia43291
Posted
What I've heard is that the symptoms of Lyme can be mistaken for PMR. (PMR is simply the name given for a group of symptoms and should only be diagnosed after other possibilities have been ruled out.) This happens quite often when physicians are not tuned into the fact that Lyme disease is now rampant in places where a few years ago it was unheard of.
The reason pred doesn't mix with Lyme is because of its immune suppressing qualities so it's much harder to treat Lyme effectively when on pred. At least according to what I read on google! But I think the main secret to treating Lyme effectively is to catch it in early stages.
shannon76840 patricia43291
Posted
What is the dose of prednisone you are on? I would have probably contracted Lyme many before so I am not sure how traetment will go. Are you pain free? Where do you live. I am in Canada in a very high risk area. I was worried that my doc would take me off the pred. Thanks for answering me. I have 1 appointment today just for recommendations and then referral to a LYME literate MD.
shannon76840 Anhaga
Posted
Hello Anhaga that does seem to be an issue the treatment with pred. I was hoping that someone had some magic. Will keep you posted on any details.
EileenH patricia43291
Posted
There are no blood tests that can be 100% certain it it PMR - the ESR and CRP tests are entirely non-specific and just show there is inflammation present in the body somewhere with no sure indication of the source. They can also be raised in Lyme's disease.
shannon76840 EileenH
Posted
I have never had elevated inflammatory markers and that is one of the reason my FMD said you dont have PMR and within 4 days I was in crisis I have not had them drawn for probably 5 months so not elevated. But without pred I lose my will to live! lol
EileenH shannon76840
Posted
And if they are "in normal range" then that applies to up to 25% of patients with PMR so can't be used to rule PMR or GCA out. More to the point sometimes is that reults may be be "within normal range" but that applies to a population of thousands - and they may be raised for YOU. My ESR ran at 16-18 for many weeks some years ago during a major flare but no-one remarked on them - MY normal ESR is in low single figures, anything in double figures is well raised!
patricia43291 EileenH
Posted
Would prednisone also take the inflammation away, if it were Lyme's only, no PMR? (Someone said pred and Lyme's don't mix.). If it's inflammation, what ever the source, seems like it should still work.
EileenH patricia43291
Posted
Depends on the cause of the inflammation - pred doesn't modify all the molecular pathways for the production of inflammation, whatever some doctors might try to infer. I don't know enough about Lyme's - except that there are symptoms, such as facial palsy, where for any other cause you might use steroids but they seem to make things worse if it is due to Lyme's.