RA or FM or LYME?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by mbofov, Aug 2, 2014.

  1. mbofov

    mbofov Active Member

    Hi all - my sister 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 the 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
  2. TigerLilea

    TigerLilea Member

    Sorry to hear about your sister, Mary. My brother is going through something similar and has been told that he has arthritis, but that they don't think it is rheumatoid. He is in a lot of pain and is scared that at some point he will have to go on disability which he doesn't want to do. His is also all over pain that started last November. He also gets the numbness in his hands, but doesn't get any fevers. His CRP was high but I don't know what the number was. I've suggested to him that he see a Rheumatologist as his GP hasn't really been much help.
  3. mbofov

    mbofov Active Member

    Thanks, Tigerlilea. My sister has crap insurance - right now she's paying out-of-pocket for everything - doctor visits, lab work, all of it, so I don't want to recommend a rheumatologist to her - I can only imagine what one would charge. She will be eligible for Medicare next April. She's still working but no insurance where she works - I don't know how long she can keep on working. To be honest, I don't know how she's doing it right now.

    It's funny - her all over pain started I think in November too, although it started with her clavicle and just has progressively worsened. She had some severe stress at work around the same time, plus some extreme physical exertion, all around the same time period and it could linked. But she doesn't know for sure.

    I was reading about the difference between arthritis and rheumatoid arthritis. Regular arthritis is caused by joint degeneration, whereas rheumatoid arthritis is caused by joint inflammation.

    Does your brother have problems with his joints, or is it generalized all over pain? I don't know if arthritis can cause all over body pain without the joints being affected. I don't trust doctors very much at all with anything unusual. The doctor my sister saw mentioned steroids - which would solve nothing and only create more problems.

    I hope your brother gets some helps, maybe he'll get lucky with a rheumatologist. But I would research anything the doctor says.

    Mary
  4. TigerLilea

    TigerLilea Member

    I wish he would lose some weight because I'm sure that would make a difference. He's been overweight since his late teens. I know someone who recently lost 24 pounds and she found it made a huge difference to her pain level.
  5. mbofov

    mbofov Active Member

    My sister's not overweight at all so it's not an issue for her. I just don't know if all her symptoms match FM (which I don't have) or RA, though they don't seem to, or maybe lyme. I'm hoping someone here can shed some light

    But I know weight can contribute to a lot of problems - maybe this will be a wake-up call for your brother. Too bad we can't make people do what we think good's for them! :) I have an older brother who recently got health insurance and his doctor started talking about blood pressure meds (I don't think he'd had a checkup in years) and cholesterol meds, so that was enough to get my brother exercising and changing his diet and he's lost weight (which we've all wanted him to do for quite awhile) and his cholesterol is going down and he's doing great. But he had to want to do it. I sent him info about how bad cholesterol meds could be, all the damage they can do, and that got him moving. I think otherwise he might have been happy just to take meds.
  6. Nanie46

    Nanie46 Moderator

    Could be Lyme or a different infection that the doctor has not discovered. In some countries, RA is treated with antibiotics and people get better.

    Please remind her that even if her 2nd Lyme test comes back negative, she could still have Lyme. Many people only test negative.

    The tests are very unreliable for many reasons...such as there are many strains of Borrelia, but only one strain is included in the test....and regular labs do not even test for many of the lyme specific bands....and if the Dr only ordered an ELISA (Lyme screen), it is practically worthless and misses most cases of lyme.

    Since she is paying out of pocket anyways, she would probably benefit from seeing an Integrative Medicine Dr, a Functional Medicine Dr or a Lyme literate Dr. They will look for the root of the problem, unlike conventional medicine.

    I can provide you with many articles about Lyme and associated infections like Bartonella, Babesia, Ehrlichia etc if you want any.

    Mycoplasma has been associated with RA.

    Has your sister gone totally gluten free? That diet change, combined with antioxidents, omega 3's and natural anti-inflammatories such as curcumin may help. She could talk to her Dr about it.(he may not know a thing about anything natural though).

    http://www.naturalnews.com/035075_gluten_intolerance_rheumatoid_arthritis.html

    http://www.naturalnews.com/041097_turmeric_rheumatoid_arthritis_curcumin.html

    http://www.naturalnews.com/039678_rheumatoid_arthritis_antioxidants_fish_oil.html

    http://www.naturalnews.com/036189_rheumatoid_arthritis_nutritional_therapy_medicine.html
    RadioFM likes this.
  7. mbofov

    mbofov Active Member

    Hi Nanie - thanks for your reply. Actually I copied one of your posts which has several links for lyme disease and forwarded it to her. She did do an anti-inflammation diet for I forget how long, at least 6 weeks - no gluten and lots of other things, no sugar, white flour, etc., it was very strict and she had no improvement at all. It's one of the first things she tried.

    I think she is doing fish oil and curcumin. She used to eat a lot of sugar, and she got away with it for a long time, but I think she knows now how damaging it can be.

    Anyways, it does seem like some sort of infectious agent to me, although I just don't know of course.

    She's spent so much money already. I totally agree that an IM doctor would be best but everyone is so pricey. All the lab work is out of pocket. Anyways, she is getting some more lyme testing done, although this doctor (a D.O.) doesn't seem to know much about it. He's ordered some tests from Stonybrook lab - have you heard of them?

    And again, with no specific joint pain or inflammation (just over all body pain and tendon pain), I'm just skeptical about an RA diagnosis - but again I don't know enough to judge here.

    She will be eligible for Medicare in April and part of me just wants to suggest to her to hang on till then ... not much of a choice -- there are some IM doctors who take Medicare, and your lab work is usually covered too.

    I've looked at some of your lyme links from earlier posts and there's a lot of good information but if she wants more or has specific questions, I'll let you know.

    Thanks for you input!

    Mary
    Nanie46 likes this.
  8. Nanie46

    Nanie46 Moderator

    Hi Mary,

    I sure hope she gets some answers.

    Stonybrook is a pretty good lab. There is always Igenex, but no guarantee of a positive result with any lab even if she has Lyme....testing is just that bad.

    However, there is a culture test that does not rely on an antibody response like the other tests. The culture test is available through Advanced Labs in PA.

    http://www.advanced-lab.com/spirochete.php

    http://www.advanced-lab.com/faq.php
  9. mbofov

    mbofov Active Member

    Thanks so much, Nanie - I appreciate all your info, and will pass this culture test info on to my sister. The tests look interesting, but pricey (of course!)
    Nanie46 likes this.
  10. mbofov

    mbofov Active Member

    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.

    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 as Nanie suggested, 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 Mikie 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 Nanie or anyone thinks differently, please do respond.

    Mary
  11. RadioFM

    RadioFM Active Member


    Radio:
    Here is some related info...

    Last edited: Aug 21, 2014
  12. IanH

    IanH Active Member

    Hopefully your sister does not smoke as smoking raises RA risk by about 5X. It also hastens joint distortion and overall disease progression.
  13. mbofov

    mbofov Active Member

    Thanks for the links, Radio. I have read some about mycoplasma maybe being implicated in RA. I've also read about transfer factor being helpful with mycoplasma. I think it helped Mikey. TF is pricey, and is derived from colostrum, which is much cheaper, so would like to know the efficacy of TF vs. colostrum.

    Mary
  14. mbofov

    mbofov Active Member

    Hi Ian - she's an ex-smoker, quit over 20 years ago. She was pretty healthy until just recently, although ate too much sugar ..... She had some severe stress, emotional and physical, shortly before the onset of her symptoms and believes they are connected.