newbie with questions

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star73
Regular Member


Date Joined Jan 2010
Total Posts : 40
   Posted 2/12/2010 2:23 PM (GMT -6)   
Hey everyone.  I was diagnosed with rheumatoid arthritis this past year.  It is termed as seronegative RA as my RF factor and CCP are negative.  My inflammation tests are elevated though.  I have been tested for lyme in the past but it was always negative.  I do not believe I was tested through IgeneX though.    I have alot of the symptoms of lyme but some of those overlap with RA.  My question is, is do any of you have elevated sed rate or C-reactive protein?   Thanks :)

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 2/12/2010 4:28 PM (GMT -6)   
Alot of us have an elevated SED rate.

Igenex testing is always best, but remember, Lyme is a clinical diag.
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 2/12/2010 5:48 PM (GMT -6)   
Yes, my ESR (Sed Rate) has been as high as 102 (normal is <20). I've also had an elevated ANA from Lyme.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


star73
Regular Member


Date Joined Jan 2010
Total Posts : 40
   Posted 2/12/2010 9:29 PM (GMT -6)   
THanks for replying....Yes I know it is a clinical diagnosis. I'm not trying to get diagnosed on this forum I just wanted to know about you guys and if your inflammation markers were elevated. The two docs I have asked about lyme testing tell me that my test was negative and I do not need the IgeneX testing but things I have read about lyme says otherwise. I am also a nurse and I'm always curious about what others labs show on these things. I'm gonna ask my new NP about further lyme testing just to be sure...hey it wouldn't hurt.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 2/12/2010 10:58 PM (GMT -6)   
Hi star73,
Welcome to the Lyme board!! It's great that you are aware that Lyme is a clinical DX. Unfortunately if is often difficult for those infected with Lyme and other vector borne diseases to be DX without a positive Western blot. Even though IgeneX tests for more markers than Quest, and Labcorp, many infected with Lyme do not show enough positive bands to qualify CDC positive. Sadly the testing is flawed, and out dated.

Do you have other Lyme symptoms besides your RA? Have you tried any ABX for a period of time and had a Herxheimer reaction?

Best wishes

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/13/2010 1:50 AM (GMT -6)   
Hi Star,

Welcome to the forum!

Yes, many of us have elevated SED rates. Mine also was elevated and has been for a few years now. A SED rates means that there is inflammation in your body somewhere. My ANA was also abnormal a few years ago but is now negative. My RF is negative as well but there are some here that have elevated RF.
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Co-Moderator Lyme Disease Forum


star73
Regular Member


Date Joined Jan 2010
Total Posts : 40
   Posted 2/13/2010 7:45 AM (GMT -6)   
As far as I know the Lyme tests I have had were sent to LabCorp.  They were just done for screening purposes really.  Many, many years ago I went to the doc when I noticed that I had quite a few lymph nodes swollen.....cervical (behind the neck), axillary, and inguinal.  They tested me then but it was negative.  I actually had a biopsy cause the doc was concerned about lymphoma...it was negative thankfully.  The biopsy just showed reactive.  This was in my early 20s. They thought it could be related to my tonsils which were always flaring up.  I always felt like I was fatigued more than the normal person but I attributed it to my stressful job as a nurse and possibly the tonsils.  Later, I had them removed and felt some better because I didn't have tonsillitis all the time! lol!   But in 2006 , I really started to feel horrible.  I ached all over and was fatigued beyond belief.  Saw a doc and he ordered tons of blood tests including LYme.  All came back negative.  He diagnosed me with fibromyalgia.  Saw a rheumatologist and he agreed.  So, jump forward to 2008 when I started having the joint pain and hardly any muscle aches.  The fatigue was still there though.  Saw my doc again and this time my sed rate and CRP were elevated showing inflammation.  So, I knew by that, that I had inflammation and now it was showing up in my blood.  Saw the same rheumatologist..he still wanted to say fibromyalgia!  I knew that with fibro you have normal blood tests for inflammation not abnormal.  I could hardly open a door or drive very far with my hands.  My feet hurt something awful.  I was still working full time and I wanted to feel better.  I got a second opinion and he diagnosed me with polyinflammatory arthritis....which is still basically my diagnosis even though he says I have seronegative RA.  I've had a few Lyme tests through the years but like I said they were just done through LabCorp I believe like the other send-out labs...ANA, etc.  
 
I am on RA meds now.  I still have joint pain and fatigue and really the only time I feel good is when I take prednisone.  I haven't had the knuckle swelling like most people with RA get.
 
I grew up in the country and ran around barefooted in the summer.  I had horses, dogs, cats, and even a pig  lol.   During the summer, it was a daily occurrence almost to find a tick somewhere on my body.  I always had to check for them when I came home.  We would roam in the fields and woods all day during the summer.  So, I have been exposed lots of times  LOL!  
 
I've never been treated for Lyme or had long-term antibiotics as the docs have never had a suspicion of Lyme.  They believe if the tests are negative then they are negative.  I don't even know if they know of sending it to IgeneX but I'm gonna ask my NP when I see her in a couple of months...maybe she will just humor me and send it there.  Does anyone know if insurance will cover the testing there?

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 2/13/2010 11:36 AM (GMT -6)   
No IgeneX does not accept insurance.

Please visit igenex.com

Best wishes

star73
Regular Member


Date Joined Jan 2010
Total Posts : 40
   Posted 2/13/2010 11:50 AM (GMT -6)   
Thanks...I went their website and it says you can send a statement to your insurance for reimbursement.  Does anyone know what the cost is?  I am having a hard time finding that on the site.

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 2/13/2010 1:08 PM (GMT -6)   
I think it is $600 for the initial Lyme Panel. Worth every penny. My co-infection didn't show up on the Quest test.
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