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Can sed rates be high with Lyme?

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Posted 7/6/2010 6:39 PM (GMT 0)

Hi all -

For those with Lyme Disease....was your sedimentation rate high when you were in active disease? My friend has all the symptoms of Lyme, and her first test was negative. She suffers from high sed rates, and aches in all her joints and muscles. There is no Lupus, no RA. She is being treated for horrible pain, palsy, headaches, depression..etc.

I really want her to be retested. any thoughts?

Thanks!! smilewinkgrin

Posted 7/6/2010 9:47 PM (GMT 0)
Yes, Lyme can cause a high SED rate. Mine has been as high as 102 (normal is <20 for women, <15 for men). I also had a high ANA with duel pattern (homogenous, speckled), but no positive splits (i.e., RF, SSA, SSB, etc.) to specifically diagnose a connective tissue disorder...so what they diagnosed was Undifferentiated Connective Tissue Disorder, and later that was changed to "Secondary Lupus-Like Disorder" - when I asked what it was secondary to, they couldn't tell me. I was subsequently diagnosed with Lyme and upon researching this nasty disease, believe the Lyme is responsible for the high ANA and SED rate in my case.
Posted 7/6/2010 10:00 PM (GMT 0)

Hey Razzle!

THANKS for the important info. I will pass this to my friend. She at least has docs who are open to retesting. Like you, she is also being treating for "secondary like - disorders".

Has the IV Cipro been helping? Do you feel like you are getting better?

Kat

Posted 7/6/2010 11:08 PM (GMT 0)
The Cipro is keeping me from getting worse, and does help keep the wandering leg pains, hand pain and bladder pain away.  It also keeps my brain somewhat functional.  But I don't feel like I am improving because every time I've been taken off abx I go back to being in pain and brain fogged up.

I was on Doxy earlier this year but it was too strong for me, so my doctor switched me back to Cipro. My gut seems to be very sensitive to Lyme die-off, so when we get too aggressive against the Lyme, my gut seems to shut down and stop working. So my doctor says we have to go very slow and thinks I'll be on abx for another year or two, possibly longer. We're trying to get my gut to work better so I can get completely off the IV nutrition (TPN), but that may not be totally possible while I'm being treated for the Lyme.

I hope your friend can get the treatment she needs soon.  Take care,

Posted 7/14/2010 4:01 PM (GMT 0)
I would take a look into Bartonella. The bacteria also comes from ticks and is typically a co-infection with borrelia (Lyme Disease). Bartonella is known to cause neurological and muscular problems in chronic cases. For example, google "John Barnes multiple sclerosis." Galaxy diagnostics has the best test for bartonella, and their Chief Medical Officer is a rheumatologist. If your friend has had little success in testing positive for Lyme, I would research more about Bartonella, because it is an emerging infectious disease and can cause serious medical issues. Hope this helps and hope your friend recovers quickly!
Posted 7/14/2010 7:49 PM (GMT 0)
I am so glad someone posted about high SED. My Aunt has had it for over 2 yrs and they said she had polymyalgia rhumatica.

she was put on prednisone for 2 yrs and about 3 months after coming off prednisone seh got worse and found out now she has big cell artery.
and not she has a spot on her lung and they want to do major surgery that will require 2 weeks in a rehab..She is 85 and has always been healthy.

I keep sayng it is lyme. It amazes me how people blow it off and come up with all this high range medical jargon diagnosis making up all htis other stuff . Every rhumatologist should be required to test for lyme .

I didn't have a high SED rate. is there any medication that will make it go down. maybe because I was on prednisone??
is anyone else out there with high SED?

high Razzel....I read somewhere ??one doctor said he has old time chronic lyme patients that function better on antibiotics and he thinks some will be on them rest of their lives in low dose pill form. what ever works, I say
Posted 7/16/2010 1:14 AM (GMT 0)
Hi, yes.  My SED rate when I started feeling really bad (severe foot pain and hand achiness) was 90.  My CRP (C-reactive protein and CCRP-cardiac CRP) were also really high.  CCRP was 15, although I forget the range.  The docs just shrugged, as they couldn't explain it.  They said not to worry, that I wasn't having a heart attack (yeah that worked- I hadn't even known what ccrp meant!).

It went to normal when I started treatment.

Razzle, LOL, that was very funny to read (that they diagnosed you with secondary something or other but they couldn't tell you what it was secondary to).  I mean, funny because you're beyond it now.

Wow, as an aside, so many folks having such a hard time getting off of antibiotics.  It is the anti-inflammatory aspect?!  Because we know for the most part that these abx are bacteriostatic (not bacteriocidal); not killing the stuff in all its forms, or in many cases, not killing it but mobilizing it. 

Jeez. I wonder if anyone has gone cowden's banderol and samento, following Eva Sapi's article.  maybe I will make a new thread to ask.

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