Blood Results for Lymes Disease

[katieb]

Hi Guys,

    Well I know one of you will have the answer to this at your fingertips !

    I've just had 2nd blood test results, and they are the same as at the end of April – ie raised Rheumatoid Factor, but everything else normal (no evidence of inflammation).

    However, my body is no way the same as at the end of April – it is seizing up more & more every day it seems. Both hands very stiff, toes & balls of feet painful, both ankles and knees very stiff and one elbow starting to hurt.

    Is this possible with Lyme's disease, or would I have evidence of inflammation in the blood also ?

Cheers,  Katie

[Lizz]

Katie, I'm no expert but I can tell you I had RA symptoms long before my bloodwork supported it. It took three years to get diagnosed after I was told I had edema, bursitis, OA , etc. I firmly believe you have to help yourself. From my hindsight, if I were you, I would seek out an AP doc asap and try to get prescribed. It can't hurt you, it can only help! As to lyme, there are many nice people here that can advise you. There is so often a Lyme component to this disease.  All the best to you!

[katieb]

Hi Lizz,

    That is so helpful ! I have the AP doctor all lined up – was wanting a diagnosis really, but perhaps we'll jast have to go for it !!

Cheers,  Katie

[Sierra]

Sounds to me like you have the classic symptoms of rheumatoid arthritis.

Sierra

[lynnie_sydney]

Katie, my symptoms preceded bloodwork markers by about 2 years. (First rheumie thought I had “psychological” problems). That was because my condition was palindromic and, whilst I had excruciating attacks, I never had active symptoms when I was in front of a specialist. RF did not go weakly positive until about 2 years down the track and then shot up in the following couple of years. And my inflammation markers were never higher than normal . You may have a palindromic version or something else. Trust your clinical symptoms, not the blood results. I'd go see Dr H. Lynnie    

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)

[superperroRA]

I agree with what others have said about RA, but you should do a thorough check for Lyme too. Ask your doctor for a complete test, SHOWING ALL BANDS, for Lyme AND CO-INFECTIONS. If your Rheumy or Primary won't do it, consult an infectious disease specialist and ask him to do these tests.

[Maz]

Hi Katie,

Not much I'd add to all the great comments here (famous last words!), except to say that rheumatoid arthritis can be both seropositive and seronegative. Rheumatoid Factor (RF) can be elevated in a number of conditions and sometimes even rises as we age.  

Lyme Disease is prevalent in the UK and is becoming more widely acknowledged. My mother-in-law who lives in Maidstone is always cutting out articles in magazines and papers for me about Lyme in Britain. So, as Superperro said, it's worth getting tested. I would add, though, that a diagnosis of Lyme must be made on clinical presentation and past history alone. Tests are just added confirmation, if positive. The reason for this is that testing methods are so inadequate that they miss (some experts say) about 60% of cases! The Lyme ELISA is the worst with Western Blot being a little more sensitive. You might have better luck with the infectious diseases docs in the UK for testing you for Lyme, but over here in the US there is a political firestorm underway with the IDSA (infectious diseases society of america) denying the existence of chronic Lyme. This is why many chronic Lymies have to seek out LLMDs (Lyme Literate MDs) and pay out of pocket for their treatments. It's a mess and the so-called “Lyme Wars” have made this very much a political disease with the Ct Attorney General calling the IDSA to task (court) over this medical society's conflicts of interests. They've just agreed 'out of court' to form a new Lyme panel of specialists to review the current guidelines for treatment, which are wholly inadequate (3 to 4 weeks of antibiotics) and don't even address well-known coinfections of Lyme. Turns out the original IDSA panel of doctors had some pharmaceutical interests in lyme vaccines amongst other conflicts. :X This is a pretty historical event in US medical history, because at no time before has any medical society been challenged for their treatment guidelines of any disease (the ones which all other doctors in the nation are recommended to follow) and it's opened up a very big can of worms here that could well extend outwards to other medical societies.

This is probably more than you wanted to know, but if the UK is following in the USA's footsteps with current treatment guidelines, you're absolutely best off getting specialised testing done through a reputable Lyme Lab and have it expedited to the US, if Dr H will help with this. Again, though, this is expensive and “out of pocket” and no one is guaranteed a positive result. This is why it must be a clinical dx….if you'd had past tick exposures, lived in or visited Lyme endemic regions of the world, etc.

Thing is, if you go to Dr H and start antibiotic therapy, you will begin treating both, if you do have Lyme. If you face roadblocks later down the road with the therapy, then you may want to look into testing for Lyme to look for coinfections that may be limited progress. In the meantime, it's not a good idea wasting precious time early on waiting for a diagnosis. You've caught this early and the earlier you get started on minocycline, the faster will be your turnaround with less chance of joint damage.

Also worth noting that there are so many causes of joint pain other than Lyme or RA…some people can and do get reactive arthritis from a number of different infections, so pinning down the infectious cause, while it may be helpful, will probably be covered by one of the tetracyclines, anyway. That's the “lumper” (lumping all rheumatoid disease into one bucket) in me speaking….but my alter ego “splitter” gets a bit concerned sometimes and jumps in, too! 😯 

Katie, if you can get a copy of “The New Arthritis Breakthrough” by Henry Scammel…all this lumper/splitter stuff will be revealed. 😉  For now, though, you're on track with Dr H. YAY!

And, after saying I didn't have anything to add to everyone's great comments, I sure went on a ramble there….:roll-laugh: Nope, haven't been into the cooking sherry, either.

Peace, Maz xo

[spacehoppa]

Hi katieB,

So sorry you find you have to be here, but on the other hand, lucky you for finding this site and the AP so early on in the course of your illness. Stepping on it early really counts for a lot. I'm confident you'll get well very quickly if you begin the AP as soon as possible.

I agree that elevated inflammation and RF can follow several years after the symptoms begin, so you need to get a diagnosis based on symptoms. My mum had classic RA symptoms (I, and her own brother already had RA, so it wasn't a great leap for the rheumie to make), but he still denied she had it for over a year until her blood test results turned positive. He just kept saying she needed to lose some weight. :doh: Doh!

So if you can find a good doctor who will treat your symptoms rather than your bloodwork, you're doing very well indeed. By the way, I live near you in Sandbach, Cheshire. Who is your AP doc by the way? Can you PM me with that? Currently my rheumatologist is prescribing my minocin, but only because he thinks we're treating folliculitis *sigh*, and he retires this month, so I may need to find another doctor before long myself.

If you ever want to meet or have a chat, just let me know.

Best wishes, ruth

[Hermsi]

Hi Katie,

Glad to hear that you are exploring all avenues as to the cause of your arthritis, quite a daunting task!

If you are going to try to rule out Lyme as a cause of your arthritis, here is an Eurolyme group who might be able to help you out.

http://health.groups.yahoo.com/group/EuroLyme/messages

Good Luck!

Ron

[Author]

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