What's Next?

[Nickie_M]

Hi all, 

A couple of things have been introduced to my world lately that I want to run by you.
 
1)  I received the latest RF factor result taken July 27/09  and the reading, after 4 wks of 100 mg mino bid,  was…… 257. That's down from 262 a month earlier.  (keep in mind though that my RF has been as high as 640 and as low as “less than 20” in the course of 1 year!)  ALL other blood tests are normal/negative including:

                          ESR…………………..4
                          CRP………………….2.25
                          C3……………………0.94
                          C4……………………0.24
                          CCPA………………..1
                          INR…………………..1.1
                          APTT…………………34.6

EXTRACTABLE NUCLEAR ANTIGENS:

             SSA, SSB, Sm, RNP/Sm, Scl-70, Jo-1 Antibodies……. all NEGATIVE

My Drs. are baffled in regards to my high RF since all other results are within normal, (or low), range.  And…..they have been for a year and a half now.

I have never shown any “swelling or inflammation” in my joints, but I did have an episode where my fingers turned blue in April 2008.  Burning, tingling toes, sore/aching muscles?……yes!!   Have I ever had a Herx?  Not that I'm aware of.  No thyroid issues, no evidence of Diabetes.
One of my Rheumatologists actually mocked me with the following:  “Maybe it's just a false positive.”    Right.  Having a RF factor at one point of 640 does NOT indicate a false positive, but—- what DOES it mean!!! :headbang:

2)  Received results of my gastroscopy.  Everything looks normal.  Biopsies:  NO H Pylori, NO abnormalities.  Hmm.

3)  I have finally gone to a Naturopath in my city, and he has ordered a Gastrointestinal Health Panel.  I am in the midst of gathering stool and saliva samples, but the directions are that I refrain from ALL herbal, mineral, iron supplements as well as antibiotics, antifunguls, antacids, digestive enzymes etc. for at least 4-5 days!  I am so worried that I am throwing my body into upheaval since I normally  take:
                Flax seed oil, borage oil, super omega 3, co enzyme Q10, milk thistle extract, fibre smart, pro biotic TX (x3), flor-essence, oregano oil extract, L-Glutamine, olive leaf extract, grapefruit seed extract, mega stress B with C, Simon's Super Mix (organically grown alfalfa leaf, buckwheat, millet, rose hip and kelp), Moducare, Vitamin C, Vitamin D and a topper of a Cal/Mag/Silica compound. Holy smokes!

Is there anything here that would NOT affect a stool or saliva panel?:P

It is not normal to feel the way I do nor to have an RF escalate so quickly.  WHAT is my body fighting??????

So what do YOU guys think?

Nickie

 

                          

[Parisa]

Nickie,

Your symptoms sound a lot like Lyme disease. Have you been tested through a reputable lab?

[Nickie_M]

Hi Parisa,

I have not been tested for Lyme by any lab.  I mentioned it to the Naturopath, but he kinda said…”first things first”, (ie. the gastro heath panel).

Thanks so much for your input.

Nickie

[Maz]

[user=1317]Nickie_M[/user] wrote:

It is not normal to feel the way I do nor to have an RF escalate so quickly.  WHAT is my body fighting??????
    

Hi Nickie,

Lots of things can cause elevations in rheumatoid factor other than RA, including other diseases and infections. A diagnosis of RA is confirmed if clinical presentation of symptoms match the ACR critieria for RA and/or supporting bloodwork (anti-CCP, CRP and SED) are elevated.

Here is a list of differential diagnoses one may have with an elevated RF. It's pretty vast and may not be complete, including all possibilities:

http://www.wrongdiagnosis.com/r/rheumatoid_arthritis/book-diseases-6a.htm

“Rheumatoid Factor: Excerpt from A Pocket Manual of Differential Diagnosis

Aging
Rheumatoid arthritis
Systemic lupus erythematosus
Progressive systemic sclerosis
Dermatomyositis, polymyositis
Infections
   Syphilis
   Influenza
   Subacute bacterial endocarditis
   Infectious mononucleosis
   Bacterial bronchitis
   Viral hepatitis
   Tuberculosis
   Leprosy
   Parasitic infection (e.g., schistosomiasis, kala-azar)
   After extensive immunizations
   Lyme disease
   Acquired immunodeficiency syndrome (AIDS)
   Cytomegalovirus
   Rubella
   Periodontal disease
Sj

[Nickie_M]

Lots of things can cause elevations in rheumatoid factor other than RA, including other diseases and infections.

Hi Maz,
Once again, thanks for your interest and insight.  It is very true that an RF reading is not pathognomonic.  However…and here's the rub….everything “infectious” that I've been tested for so far is coming up blank.  At this point, we can, according to several test results, rule out the majority of the possibilities on the list.  The age thing? (Had my last menstrual period 3 years ago at age 59 and my hormones when completely bonkers.  UGH!)  Thought of that and so did my one of my Physicians, but aging sometimes produce a 'slight' increase in RF, certainly NOT 640!  And…how QUICKLY that factor can be influenced is mind boggling to me.  Within a week from “less than 20” to “254”??  That is crazy considering the fact that clinically I don't present differently now than a year ago.  Oh heck.  In the end does a 'diagnosis' REALLY matter?  I am now on a steady AP regime of M-W-F 100mg mino.  (and of course all my supplements) 😀  And…..I am going to ask again about the Lyme Testing.

Take care,  Nickie   

[lynnie_sydney]

Nickie – whilst I do agree those are pretty wild swings, it IS possible that you have some form of Palindromic RA (or indeed possibly Lyme as has been discussed). When I was first diagnosed with PRA, my RF was negative (as were all my other markers). Within a year, the RF was “weakly positive” then quickly went sky high (they didnt give me results in those days). I had had the condition for a very long time before I went on mino. Then my RF went from 692 to mid 300's in less than 6 months – and that was with longstanding disease. All my other markers were normal. With Palindromic RA, inflammation markers only tend to be elevated if blood is taken during an attack/flare, which for me generally was around 3 days. Otherwise they were perfectly normal.

When did your symptoms start? If you are in the early stages of whatever you have, those big swings in RF are possible – plus a very quick response to the abx treatment. Lynnie

P.S. Even though you dont yet have a diagnosis, it would be good if you could add some details to the signature box in your profile, so people can see those each time you post. 'As yet undiagnosed, symptoms of xxxx began xxx  trialled mino xxx months currently being monitored monthly for big RF swings' – something like that will really help people answer more meaningfully to your puzzling journey and you can update at any time. Go to My Account, Click on Profile tab than add details in the  signature box.   

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Nickie_M]

Hi Lynnie,

Am I correct in interpreting that you could have had a RF of 692 for quite some time and didn't even know or intervene in any way?  That's really something, isn't it?  Did you HAVE any inflammation in the specific area that was being targeted at any given time?

Symptoms first sent me to a Dr. in 1995.  At that time my RF was “slightly” elevated. 

  Thanks, Nickie

btw…I entered some things in my signature box .  Sure hope it shows up. :blush:

Ahhh.  I see it did.

[lynnie_sydney]

Nickie – 692 was the first RF reading after I started mino. In fact, it initially went UP from 511, probably a sign of a herx. 6 months later it had dropped to mid 300's. I had had PRA for about 13 years by that time. When my symptoms originally started, I was RF negative. You can read more about the beginning, progression, treatment etc in my testimonial. Lynnie

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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