posted
I was wondering (and hoping) if anyone here who was told they had lyme actually found out later that they had, instead, PMR? If so, I would appreciate greatly hearing from you.
This has happened to me after being on Doxi for over 10 months and I didn't know if this is a common misdiagnosis. I always had an elevated Sed Rate as well as an elevated CRP (both of which had been normal before falling ill).
Thanking you in advance.
Gailsy. Posts: 31 | From Bloomfield, New Jersey | Registered: Nov 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
PMR sounds to me like it translates to rheumatoid arthritis with aches and pains everywhere.
People with lyme often get rheumatoid diagnoses.
Did you ever have a positive lyme test or a confirmed bite?
I'm concerned that the PMR diagnosis could a fancy name for unidentified pain by someone who is not familiar with and doesn't know how to treat lyme.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
I think its more the other way around, people have lyme and its misdiagnosed as PMR. I know someone who was diagnosed with PMR the same time her husband was diagnosed with lyme. coincidence? i don't think so.
Posts: 615 | From maryland | Registered: Oct 2007
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posted
I would like to stress that you need to be very mindful of treatments. While the treatment for Lyme would not necessarily affect PMR... the other way around could be disastrous.
Postgrad Med. 1995 Jan;97(1):161-4, 167-70.
Polymyalgia rheumatica or Lyme disease? How to avoid misdiagnosis in older patients.
Paparone PW.
Lyme Disease Center for South Jersey, Absecon.
This case report demonstrates the need to consider Lyme disease in older patients who present with nonspecific signs and symptoms often seen in polymyalgia rheumatica, particularly a markedly elevated erythrocyte sedimentation rate (ESR).
ESRs greater than 100 mm/hr are common in polymyalgia rheumatica, but rates higher than 85 mm/hr are also possible in Borrelia infection. Because positive serologic findings for Lyme disease have been noted in patients with polymyalgia rheumatica who have been exposed to endemic areas, differential diagnosis must be based on clinical manifestations.
Response to therapy should be monitored closely to confirm the diagnosis and avoid the adverse consequences of inappropriate treatment.
The potentially deleterious effect that corticosteroids can have on Lyme disease must be considered in the decision to treat polymyalgia rheumatica.
PMID: 7816713 [PubMed - indexed for MEDLINE]
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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quote:Originally posted by MamaWolf: ESRs greater than 100 mm/hr are common in polymyalgia rheumatica, but rates higher than 85 mm/hr are also possible in Borrelia infection.
Absolutely true!! I was tested for PMR 25+ yrs ago, but because my sed rate was low....he told me I had fibromyalgia.
I dont' think I was ever tested for lyme until Aug, 2000.
As Mamawolf stated, being treated with steroids for PMR would be hazardous to your health if you actually had LYME.
Be sure to be tested through Igenex Lab in CA. Ask for test kits #188 and 189.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Nearly any other dx is easier for a doctor to make - and to "treat" than lyme or TBD (tick-borne disease, meaning any one or combination of co-infections).
My guess is that PMR is an easy umbrella that many lyme patients get stuck under.
How were you dx w/ PMR? How are they absolutely sure it's not lyme ? Lyme can take years to treat, so it can't just be assumed it should have been "cured" by now. Also, combination therapy/cocktails may be necessary. Other TBD / coinfections should be considered.
Are you being treated by a LLMD? If not, please do not start treatment for PMR until you consult with a true LLMD.
Unless lyme is treated early, treatment can take a long time. Be patient, and get the best care possible.
You might also ask your LLMD about testing for Cpn, HHV-6, mycoplasma, etc - other stealth pathogens that can trigger rheumatic symptoms.
ANY STEROID TREATMENT (as for PMR) CAN BE DANGEROUS if lyme is present. Others have dutifully stated this. It cannot be overstated - it is that important.
You might also note the related links on the right side of PubMed's abstracts.
===========================
excerpt: The potentially deleterious effect that corticosteroids can have on Lyme disease must be considered in the decision to treat polymyalgia rheumatica.
Polymyalgia rheumatica or Lyme disease? How to avoid misdiagnosis in older patients. Paparone PW.
Lyme Disease Center for South Jersey, Absecon.
This case report demonstrates the need to consider Lyme disease in older patients who present with nonspecific signs and symptoms often seen in polymyalgia rheumatica, particularly a markedly elevated erythrocyte sedimentation rate (ESR).
ESRs greater than 100 mm/hr are common in polymyalgia rheumatica, but rates higher than 85 mm/hr are also possible in Borrelia infection.
Because positive serologic findings for Lyme disease have been noted in patients with polymyalgia rheumatica who have been exposed to endemic areas, differential diagnosis must be based on clinical manifestations.
Response to therapy should be monitored closely to confirm the diagnosis and avoid the adverse consequences of inappropriate treatment.
The potentially deleterious effect that corticosteroids can have on Lyme disease must be considered in the decision to treat polymyalgia rheumatica.
PMID: 7816713 [PubMed - indexed for MEDLINE]
-
[ 24. November 2007, 12:29 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
What Roro said, usually the other way around!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
PMR. I'm so sorry I was not clearer in my first email. I did, indeed, see a very good LLMD in NJ. The first MD I saw was not such a good LLMD and he did the test at Igenex but apparently not the complete testing. I never got better. I was on Doxi for a very long time and never again tested positive for Lyme or for any of the other underying problems that may come along. The test was realy not clear when it came back from IGENEX.
Now that I am in NY State I have been positively identified as having PMR and am finally on the mend. When I see that little icon of the person hitting themselves on the head I feel that way. I have the two classical symtoms of PMR . . . elevated C Reactive Protein, which prior to being sick was always very very low, and a very elevated SED Rate, which also was very low prior to getting sick. I had started a very stressful job the same time I got sick and I can see how things just rolled around.
Sometimes you just gotta go with your instincts. My question here was just if some people did find out later that Lyme was not the issue. I know that Lyme can mask a million other things.
Thank you all so much for your helpful answers and also for reminding me to BE CAREFUL! So true.
Gailsy
Posts: 31 | From Bloomfield, New Jersey | Registered: Nov 2006
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posted
Gailsy, I can relate. I was diagnosed with Lyme disease, treated with longterm antibiotics, not just doxy and did pretty well. Seventeen months ago I developed severe ongoing headaches. They never stop, 24/7. No one can diagnose them. My CRP rate is about 8 - high for me, but not that high. My sed rate continues normal. One doc has threatened to biopsy a brain blood vessel. I've had two normal MRIs and a normal spinal tap. Go figure.
At this point I no longer believe anyone, especially doctors. Of course, that leaves me pretty much up the creek with a headache, but without a paddle.
Did the doc put you on steriods? I would be terrified to take them. I cannot imagine ever assuming I no longer had borrelia or mycoplasma infections. Furthermore, I am of the educated opinion that autoimmune diseases are all caused by chronic, intracellular infections. Perhaps the infections are untreatable.
I better stop writing now, because I just want to go to bed, so my head won't hurt or I won't know it for a few hours.
Paula C.
-------------------- Paula Carnes Posts: 23 | From Las Vegas, NV | Registered: Jan 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I have lyme and rheumatoid arthritis. I also have babesia, Ebstein Barr Virus and h. pylori.
The infections caused my RA. Getting rid of the infections is also getting rid of my RA. I am working with an LLMD who is also a rheumatologist and incorporates some alternative medical care as well.
I have the best of all worlds!!!
Just treatment for H.P. stopped most of my joint pains. I hosted T'giving this year for 25 people and my right ankle did ache off and on, but nothing else. I used hot/cold therapy on the ankle and got through it all just fine.
My #1 advice:
Change your diet!!!!!!
This will begin the healing of your body and allow the meds/herbs to kill and clear the bugs much quicker.
Even after my joint pain had subsided, the LLMD placed me on methotrexate and humira. She said when we go after the babs, joint damage may occur and she wants to avoid that.
My treatment is not yet over, barely begun. But my life is back to normal and I know my extremely healthy diet plus "accurate" supplementation plays a big role in that.
By "accurate" supplementation, I mean supplementing only what bloodtests reveal me to be deficient in. For me that is selinium, zinc, Vit D, magnesium. I am also supplimenting B-12 as people with inflamed joints should not eat red meat.
Dr also has me on CoQ10 and a folate to offset the methotrexate. I switched from Humira (so painful) to Enbrel. However, I was completely out of pain before I began these immune altering drugs. I was scared to take them, but this doctor also has me on antibiotics to kill the pathogens.
She is also giving me IVs of herbal parasite solution. She is attacking the babs with the solution and plaquenil and biaxin before putting me on Mepron. Her goal is to have me on Mepron as short a time as possible. Based on what I have read here, I am all for that.
The doctor and I believe we can put my RA into permanent remission.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Gailsy, I don't know if this helps by I do know of an older man here locally who has PMR. What is interesting is that I found out only this year that many years ago - long before Lyme was even discovered - he had contracted Rocky Mountain Spotted Fever. I have no idea what treatment might have consisted of back in the 60s.
So, PMR certainly could be the result of some TBD, but not necessarily from Lyme. Were you ever screened for RMSF (or most other TBDs)?
Like others here, I am concerned about the use of steroids if an infection is present. And I'll lay odds that there is a microbe at the heart of nearly every autoimmune/ arthritic problem.
If I ever get time (ha!), I want to do some investigating of a supplement called CMO - Cetyl Myristoleate. It is a fatty acid derivative, presently made from an isolated fraction of cattle tallow. In a different group, I've now read posts from 3 people with various types of ``arthritis'' - 2 with severe problems - who used this product and found relief in a very short period of time.
Perhaps someone here on the board has already tried this - perhaps I will post about it before I get too far.
In any event, I hope you will continue to look into other causes, therapies, and treatments for your PMR.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hey there, Truth,
I tried CeytlM for 3 months. Flexin was the brand I used. It did not help me a bit which was very disappointing. I know others who have had significant relief so it is well worth a try.
Flexin will send you 1 free bottle (least they were doing that) and will refund your money if you do not have positive results after 3 mths.
Luvs
PS: I have no affiliation with Flexin whatsoever except I was a consumer who tried their product.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Hiya, Luvs -
Thanks for the report! Three months certainly seems like long enough to get results if you were going to get them.
Had you already altered your diet at that time - began the vegan diet?
And I did notice that of the people posting about success with CMO, none of them had TBDs (or were aware of it). There may be a big clue in that fact, too.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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