RA or FM or Lyme?

[Mary]

Hi all - I know this is a CFS/ME forum but am hoping someone here might be able to help my sister.

She was just told she likely has rheumatoid arthritis - she has bodywide pain, it started in her clavicle and has progressed, she gets fevers, severe muscle weakness, tendon problems, she's a mess. However, she doesn't have any redness or swelling of her joints, which I think is usually the major symptom of RA.

She also doesn't have sleep difficulties.

She had one test for lyme which was negative but I know that doesn't necessarily mean much and the doctor is going to do one more lyme test. He's not an LLD though and is only doing the second test at her request.

She's been taking ibuprofen - it's the only way she can really function, and when the pain is gone or lessened, her muscle strength comes back. She also gets regular fevers which disappear with the ibuprofen. When the ibuprofen kicks in, she doesn't feel too bad.

She also gets some numbness I think in her hands, I can't remember exactly.

Any ideas, anyone?

Her CRP number was around 10 I think.

Mary

 

[minkeygirl]

Can't help but I know some people who swear by Doctor's Best Benfotiamine for her numbness. Not sure if it's the same as your sister's but worth a shot.

 

[Mary]

Thanks, minkeygirl. I've read that bentofiamine can be very effective for diabetic neuropathy and numbness, but that's not what's going on at all with my sister. The numbness is temporary but the pain never leaves and she gets fevers and then brain fog, and extreme fatigue.

Mary

 

[minkeygirl]

As I said, I wasn't sure if it was what your sister had.

 

[WillowJ]

hi, does she get stiff in the mornings for about an hour? that seems to be distinguishing for RA, too.
http://umm.edu/health/medical/reports/articles/rheumatoid-arthritis

http://arthritis.about.com/od/radiagnosis/

If she and you don't like the diagnosis given, explain why that one is confusing to you and ask if it might be something else.

 

[Valentijn]

I don't think numbness is an RA or FM thing. If getting tested again for Lyme, there's a good test from Infectolab.

 

[Mary]

hi, does she get stiff in the mornings for about an hour? that seems to be distinguishing for RA, too.
http://umm.edu/health/medical/reports/articles/rheumatoid-arthritis

http://arthritis.about.com/od/radiagnosis/

If she and you don't like the diagnosis given, explain why that one is confusing to you and ask if it might be something else.

Thanks, Willow. I'm not sure about the morning stiffness, will ask her. I don't think the doctor knows what's going on, is just giving his best guess. But I know how hard it can be to get a proper diagnosis for anything unusual, anything there's not a simple blood test for.

He is doing another lyme test, at her request. If she hadn't brought it up, he wouldn't be doing it. So I don't think he
has any other ideas. But it wouldn't hurt to ask - she may have already asked him, I'll find out.

 

[Mary]

I don't think numbness is an RA or FM thing. If getting tested again for Lyme, there's a good test from Infectolab.

I just looked up infectolab - it appears to be only in Germany and Australia - I don't think this would work for the U.S. - do you know if people send blood for testing from the U.S.?

 

[Valentijn]

I just looked up infectolab - it appears to be only in Germany and Australia - I don't think this would work for the U.S. - do you know if people send blood for testing from the U.S.?

Someone said that Igenex will have the blood drawn for the test and ship it to Infectolab.

 

[Mary]

Thanks, Valentjin. Her doctor is going to have a test done by Stonybrook lab, but I don't know what test it is. He's not an LLD. I'll tell her about this and keep it in mind.

 

[Nielk]

@Mary -

I'm sorry that your sister is going through this. Why does her doctor think that it's RA? Do RA markers show up on her lab work?

 

[Mary]

Hi Nielk - I don't know. She forgot to get a copy of her lab work and she's going to do that, so when I get that info I can post it. I suppose it would have been good to have that info before doing this post!

But I know there's no definitive test for RA and she doesn't have swollen painful joints - she's got pain everywhere, but not joints.

Anyways, when I get more info I'll post. Thanks!

 

[Mary]

I finally got the lab work my sister had done. And it's looking a lot like RA. All of these numbers were better 3 months ago.

Re morning stiffness: she said the extra morning stiffness only lasts a few minutes, but she is stiff in general all day.

CRP - very high - 108 (not 10.8) - range is 0 - 3.0
All her iron numbers are low
Fibrinogen - high - 677 - range of 193 - 507
Platelets - high - 462 - range of 150 - 379
Neutrophils - high - 78 - range of 40 - 74
Calcitriol - high - 114.2, range of 10 - 75
Sed rate - high - 67, range of 0 - 40
CCP Antibodies IgG/gA - high - 82, range of 0-19

From what I read the last number is the strongest indicator of RA. I don't think she had the CCP test done 3 months ago so no comparison there, but her symptoms are definitely worse than 3 months ago.

Her doctor, a D.O., is also going to do a blood culture to see if some infectious agent shows up. Apart from that he's suggesting she see a rheumatologist. From what I can tell, rheumies mainly give out steroids and very powerful drugs similar to chemo drugs.

I have been reading about several possibilities for pathogens associated with RA, including mycoplasma, also amoebas and other microorganisms. One treatment recommendation in the amoeba camp involves flagyl. Another a particular antibiotic. And all talk about diet and so on which I think she's pretty good about now.

I'm also going to do some reading about transfer factors and mycoplasma - I know someone on another board had good results with transfer factor.

So there's a lot to read about, I think it's going to be trial and error, like what we all go through! With these numbers I'm guessing lyme is ruled out, although if anyone thinks differently, please do respond.

Mary

 

[WillowJ]

I take it she had a positive RF test previously.

Neilk may be able to tell you more, but rheumies also have a class of drug called DMARD, disease-modifying anti-rheumatic drug. Stuff like Plaquenil.

They also might use immune suppressants like are used in organ transplant recipients, not benign drugs but people do live with them (i.e. using them on a long-term basis).

And yes, they also use steroids like Prednisone and some of them will in some cases use selected chemo drugs, like Rituxan that's being studied for ME.

Antibiotics are not without risk, either. There is a very interesting theory that autoimmune diseases could be caused by infections, however.

 

[taniaaust1]

Sounds like it is best for your sister to just go and see the rheumatologist rather then trying to get answers from websites when she has all those abnormalities, it should make her easy to diagnose with the right specialist.

 

[Mary]

I take it she had a positive RF test previously.

Neilk may be able to tell you more, but rheumies also have a class of drug called DMARD, disease-modifying anti-rheumatic drug. Stuff like Plaquenil.

They also might use immune suppressants like are used in organ transplant recipients, not benign drugs but people do live with them (i.e. using them on a long-term basis).

And yes, they also use steroids like Prednisone and some of them will in some cases use selected chemo drugs, like Rituxan that's being studied for ME.

Antibiotics are not without risk, either. There is a very interesting theory that autoimmune diseases could be caused by infections, however.

Hi Willow - I don't think she's had an RF test. Her doctor's mother had RA for some 50 years so he's familiar with the disease. I looked up RF vs. the CCP antibodies test and it appears the CCP test may be more accurate. However, I will suggest to my sister that she ask her doctor why he hasn't ordered the RF test. And she probably will see a rheumatologist too who I know will discuss drugs with her. And maybe she will take some of them. From what I read, these drugs do not cure RA, maybe ameliorate symptoms but also come with a host of unwanted effects. So it is a trade-off.

I have been reading about a couple of different theories about an infectious agent causing RA, which theoretically if dealt with, could cure the disease, or at least put it into remission. But I don't think this is mainstream medical thinking (just like erroneous mainstream thinking with CFS is to use graded exercise and cognitive behavioral therapy) and I think she would have to search out a provider for this treatment, probably not easy to find. And yes, antibiotics are not without side effects either - choose your poison it seems --

Thanks for your input -

Mary

 

[Mary]

Sounds like it is best for your sister to just go and see the rheumatologist rather then trying to get answers from websites when she has all those abnormalities, it should make her easy to diagnose with the right specialist.

Tania - she probably is going to see a rheumatologist. I'm the one doing all the research. My experience in dealing with doctors for the past 16 years in relation to CFS has been mostly negative. Most know so little, and most gains I have made have stemmed from my own research and using myself as a guinea pig. So it's second nature to me to try to find out as much as possible. I guess I don't have a very good opinion of rheumatologists either. I've never seen one but have read so much about FM patients having negative experiences with them. I'm not trying to replace a doctor for my sister, but I do think she will do best if she arms herself with as much knowledge as possible before seeing a rheumy.

And once diagnosed, I think she needs to know as much as possible about her treatment options and not rely solely on the doctor for information.

 

[Nielk]

I finally got the lab work my sister had done. And it's looking a lot like RA. All of these numbers were better 3 months ago.

Re morning stiffness: she said the extra morning stiffness only lasts a few minutes, but she is stiff in general all day.

CRP - very high - 108 (not 10.8) - range is 0 - 3.0
All her iron numbers are low
Fibrinogen - high - 677 - range of 193 - 507
Platelets - high - 462 - range of 150 - 379
Neutrophils - high - 78 - range of 40 - 74
Calcitriol - high - 114.2, range of 10 - 75
Sed rate - high - 67, range of 0 - 40
CCP Antibodies IgG/gA - high - 82, range of 0-19

From what I read the last number is the strongest indicator of RA. I don't think she had the CCP test done 3 months ago so no comparison there, but her symptoms are definitely worse than 3 months ago.

Her doctor, a D.O., is also going to do a blood culture to see if some infectious agent shows up. Apart from that he's suggesting she see a rheumatologist. From what I can tell, rheumies mainly give out steroids and very powerful drugs similar to chemo drugs.

I have been reading about several possibilities for pathogens associated with RA, including mycoplasma, also amoebas and other microorganisms. One treatment recommendation in the amoeba camp involves flagyl. Another a particular antibiotic. And all talk about diet and so on which I think she's pretty good about now.

I'm also going to do some reading about transfer factors and mycoplasma - I know someone on another board had good results with transfer factor.

So there's a lot to read about, I think it's going to be trial and error, like what we all go through! With these numbers I'm guessing lyme is ruled out, although if anyone thinks differently, please do respond.

Mary

The anti-cpp test is the most accurate marker for RA. I'm not a doctor but I think that most Rheumatologists would diagnose RA just based on that result.

 

[Mary]

That's what it sounds like, Neil - it's just odd to me that her joints don't seem to be affected particularly. Anyways, I believe she is going to see a rheumatologist who hopefully will be able to confirm the diagnosis.

 

[WillowJ]

Hi Willow - I don't think she's had an RF test. Her doctor's mother had RA for some 50 years so he's familiar with the disease.

I just assumed RF test was why they had ordered CCP in particular, especially with no joint problems or morning stiffness (as no other relatively specific rheumatic tests were on that list, and it seemed to be a GP/PCP), but if your doc has experience with RA that could be why. Could be seeing something that I don't know about.