I've spent the last 20 years or so trying to find out why I have "rigor mortis", without actually being dead. Extreme stiffness, mostly in my connective tissue, worse after periods of inactivity, and worse after activity as well. I have been tested repeatedly for Lyme, of course antibodies only, always negative, tested for RA, always negative till last year when it was just slightly postive "not significant", and sed rate was very low, so I don't think RA has anything to do with this, although something "rheumatic" is going on, I've had some odd joint swelling and inappropriate pain for minimal exertion lately.
Just had another round of tests, specifically asked for CD57 panel. The results are:
HNK1 CD57 Panel %CD8-/CD57+Lymphs 2% range 2-17 Abs,CD8-CD57+Lymphs 42 Flag LOW /ul range 60-360
Lyme IgG/IgM Ab <0.91 negative
Western Blot on synovial fluid: They told me it was negative, but I can't read the lab tests or band results from the fax they sent, so I'll post back with those when I get a good copy. From what I can read, only band 39 was Present.
RA Latex Turbid. 15.5 HIGH IU/mL 0.0-13.9
I remember being bitten by a deer tick once in 1997, I was treated with 3 weeks of amoxy, but the bite was inflamed and itchy for a year afterwards, is that significant? From what I understand from reading Burrascano's paper on advanced Lyme, the only thing known to depress the CD57 is Borreliosis, so is my low count significant?
Thanks for any help on this!
Posts: 18 | From NH | Registered: Apr 2006
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posted
I believe I heard Dr. S of the "Mold Warriors" say that CD57 can also be a marker for toxicity. I may be wrong, and I hope someone can confirm or correct. Was your Western Blot done by LabCorp as well? Don't assume that a negative WB means that you don't have lyme. A lyme-literate doctor should be able to evaluate and diagnose by symptom history. Your CD57, if it is 42, indicates a state of chronic lyme according to Dr. B., so your count is significant.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
Just returned with a legible copy of my Western Blot, which was done by Labcorp in NY. I'm very confused.
In the first part of the test, two bands, 39 and 41 are present and flagged. LYME IGG WB INT is "Negative" One one part of the test it says Positive is 5 of the following bands, 18,23,28,30,39,41,45,58,66,and 93 - I only had 2.
In the next part of the test, "for investigational use only", LYME IGM WB FL, P42, P39, P23, only P39 is present, LYME IGM WB, INT says "Negative". The "Postive" diagnosis there must be two of the three bands,and I only had 1.
Is this suspicious?
There is a LLMD in the next town, of course they don't accept insurance, so I guess I have to decide whether to pay out of pocket for at least a consult, or just accept that even though there are positive bands and high RA reading, 'there's nothing wrong with you'. I'm not buying it....
ETA....on the bottom of my Western Blot test, P41 is "flagellin", that has something to do with the tail of the spirochete, doesn't it? P39 is not identified, but that was the other one that's positive.
posted
hey rigor...I'm not a dr but your cd 57 and wb sound like chronic lyme to me.
I know it stinks to have to pay to see a dr, but unfortunately many of us with lyme have to do just that. Check out what your insurance saids for out of network drs. You may have to pay some or all up front to the LLMD, but your insurance may reinburse all or some.
Also for your info, there is a lyme info night in Wolfboro NH on friday april 28th at 6pm at wolfboro high school ..it's free. You can find offical info on the Lyme Disease Association website.
In my opinion, if you think you are dealing with lyme, find the best dr you can. Fortunately we now have a couple in NH.
Wishing you well!
Posts: 663 | From NH USA | Registered: Sep 2004
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posted
I'm in the process of trying to call the doc and ask why the out of range RA is 'not significant', and also why the low CD57 isn't mentioned either, perhaps he doesn't know what it is, since I'm the one that asked for it. He's an ortho, not a rheumy.
The deductible on my 'out of network' docs doesn't even cover the initial consult with the nearest LLMD, and then they only pay 70%, I'm sure of their 'reasonable and customary', which would end up being about half of the fee.
Thanks for the info, Wolfboro is way far away from me, but there must be something nearer the seacoast. Have to get diagnosed first, don't I? Posts: 18 | From NH | Registered: Apr 2006
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
RigorMorticia,
Hate to break the news to you but if you have a positive Band 39 WB you have lyme disease, no question about it. Criteria stated in your blood test for a positive result was the CDC criteria for reporting purposes only, not for diagnosis. Get yourself to an LLMD ASAP!
WESTERN BLOT IN LYME * Positive blot contains bands specific for Lyme * Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93 * Spirochetes in general: 41 * Nonspecific: All others! * The more specific bands that are present, the more sure the diagnosis
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
hi again,,, the event in wolfboro is a community education sort of thing, so anyone interested in good info on Lyme Disease can attend. I know it's a ways from the seacoast, just thought I'd share the info in case you are interested and can get a friend to go with you and share the trip.
I hope you can find your way to an LLMD soon, or find a local doc willing to treat w/ reference to Dr. B, or ILADS guidlines. Sometimes you can see an LLMD occasionally and work with your pcp in the middle if they are cooperative.
I wish you well! Posts: 663 | From NH USA | Registered: Sep 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
My CD57 is very similar to yours and I have documented chronic Lyme and coinfections. As one of the other posters mentioned, I read that Dr. S. believes that a low CD57 can also be attributed to mold/toxins.
My insurance pays almost nothing for Lyme treatment, even though I supposedly have a good plan. Most of us are in this same boat, unfortunately, but it's better to pay for a knowledgeable Lyme doctor who can diagnose you properly and get you into treatment than to let a disease continue to replicate in your body.
With all the rheumatic, autoimmune testing you've been through, did they ever check for scleroderma? When I became symptomatic with Lyme, but didn't know what I had, I went through lots of autoimmune testing, too, given my history of autoimmune diseases, and they checked rheumatoid arthritis, scleroderma, lupus, etc. - there are other connective tissue diseases they could check just to rule out that, too, if you want to be super thorough. But I'd personally get to a Lyme doctor as soon as possible given your tests.
Let us know what happens. Good luck. Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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For lack of a better diagnosis, what I have, my 'rigor mortis' was dumped in the FMS bucket, because what else do you do with something that doesn't show up on a lab test? I consider the FMS NOT a diagnosis, it's a collection of symptoms, caused by WHAT? Maybe Lyme. I already have Hashimotos, treated and under control, and all these 'rheumy' symptoms, joint swelling etc. are new in the last year or so. Before that, most of my adult life, I have just been stiff, always stiff. An hour in a car KILLS. It's not muscle, I can lift 30K lbs in a session at the gym and suffer no muscle weakness or pain, but oh, the connective tissue freezes solid and I pay dearly afterwards.
Been tested for everything under the sun, including mycoplasma, nothing shows up as 'positive enough'. When all of this surfaced last year, my GP said he would consider a course of antibiotics, but wanted me to try an elimination diet first. That helped some, but didn't resolve anything as far as stiffness. So I may try him first, give him all this info with the band results and see if I can make headway. If not, I guess I cough up some dough and see a LLMD.
All this info has been most helpful, I'm looking to put together a package of info to take to the doc explaining why the band results are important, regardless of what the CDC and the insurance companies say, seems like they're the ones practicing medicine these days,not the docs.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi again,
I hope you get a definitive diagnosis. I developed Hashimoto's, too - years before Lyme, but in connection with chronic fatigue syndrome (yes, I know CFS may be Lyme, but in me it seemed to be connected to a pesticide exposure).
But Hashimoto's is also very common in people with Celiac Disease (autoimmune gluten intolerance - they are similar genetically) and many people with Lyme also develop Celiac Disease or Celiac-like gluten issues.
I went gluten-free a couple of months before the tick bite, but you might want to try to avoid gluten unless you already did that as part of the elimination diet you tried.
Being gluten-free is hard, but once you get it down pat, it can be done.
I really wish you the very best. Jill
[ 24. April 2006, 12:03 PM: Message edited by: Jill E. ]
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I would suggest that you get a Western Blot by Igenex Labs in CA. It will be far different from the results you now have. [What lab were you tested through??]
"39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
Having this band alone means you have Lyme. There's no other explanation for it to be there.
Also, you may be interested to know that many Lyme patients have a LOW sed rate. Mine is "3".
There was recent discussion about that here. You can do a search to find it.
Have you read Treepatrol's links yet? Lots of information there!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thank you all again for your help. I've been reading the links, it truly exhausts me to have to start this crusade again to get properly diagnosed. A couple of specific questions, apologies if the answers are obvious, I'm overwhelmed with all the info here.
1. The significance of bands 39 and 41 - 39 showed up Present in both IGG and IGM, 41 only showed up in IGM. I am presuming that the "explanation" of their presence will be that I was exposed at some point, it does not indicate an active infection - or does it? How will I be able to discuss with my doctor, intelligently, that these test results are meaningful in the absence of positive antibody tests and/or CDC criteria for a postive test?
2. Is there any evidence to suggest that surgery could aggravate an existing long term infection and exacerbate symptoms? Knee surgery in Dec was to be simple and should be OK, but that hasn't been the case and I truly do not feel this is a 'mechanical' problem, I've seen the photos of my knee inside and there is no reason to think I should continue to have problems once the damage was repaird. And yet...
Posts: 18 | From NH | Registered: Apr 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
CD 57 is only known to be a marker for Borrelia infection. Band 39 is a very species-specific bands for Bb as well. The number of bands really does not matter - it is whether or not they are species-specific that is important. Other than Dr. S which I had not heard so far, I am unaware of CD57 being impacted by mold.
Surgery can ABSOLUTELY exacerbate symptoms or cause Lyme to become more active.
I would get an LLMD and start pursuing further including testing for ALL coinfections. That is CRITICAL. Be well
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Do you have any sources or links that confirm surgery could exacerbate Lyme if it's a chronic infection, and what effects it might have?
Posts: 18 | From NH | Registered: Apr 2006
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bettyg
Unregistered
posted
Rigor and Jill, welcome to you both on this 24/7 educational and support board.
I can't get into my software right now to copy/paste my own newbie links for you including TREEPATROL'S NEWBIE LINKS from page 1 of medical. Print it off; then you'll know what's available here; Tree updates regularly.
Print off Dr. B;s 05 lyme treatment guidelines, 33-40 pages!
Now I have a big favor to ask of both of you newbies, please go back into your above posts and hit the ENTER key often breaking up those LONG continuous paragraphs, and DOUBLE space between each paragraph please.
We neuro lymies can not read what you have posted. In order for us to be able to read this, we need short paragraphs and white space of an empty line per paragraph.
Be thankful you are not advanced to our stage; it's very frustrating.
Thank you from 1 neuro lymie for other neuro lymies. You'll see me post this over & over; I don't give up easily.
I just have the killer function test taken last Thurs., so I'm interested in everything you all have to say since it's brand NEW to me.
I learned also I have food allergies in 57 years alive; have mold, mercury, and magniseum, and celiac spure problems! No one ever followed me like my new LLMD/holistic MD did last Thurs.
If you are interested, you can read my post in medical .. Feedback on my new LLMD or something like that. Most thorough 3 hr. exam I ever had.
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hi RM,
I know it's quite a desision to go to a cash LLMD.
They best advise I can give which I took from someone else on this board is...........
Get the best doctor you think you "can't" afford. Beleive me you'll save in the long run. Your health and your career.
Even with this information I still took a few months to get to a true LLMD. I wish I never wasted my time.
Do not pass go do not collect $200. Go straight to the cash LLMD.
MDL labs is also a good lab and is covered by my insurance which only accepts Labcorp. I don't know how they do it but they get paid by most insurances. http://www.mdlab.com/html/home.html
Love and healing
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Rmortica:
The Lyme bacterica can SUPRESS Lymphocytes. And band 39 kDa is the most specific ban dyou can have.
You have Lyme.
If you are in NH- there is a good Lyme Doc there. Contact VTLyme (yahoo list) for other people in your area (with Lyme) you can talk to.
If only it were that easy! I am compiling info to take to my doc next week. It will cost me a $20 copay to find out whether or not he's on board with further testing/treatment based on the tests or whether he's going to say "no antibodies, no Lyme". If that's the case, then I go to the next town to the nearest LLMD and pay out of pocket.
By the way, a lot of this info in the newbie links, etc. is good and informative, but from a doctor's POV it's anecdotal in the way that it's quoted from other posts, and doesn't have the proper attributes or links to where it was originally published, what studies, etc.
I have found some, I certainly don't want to be admonished by him for 'believing stuff I read on the internet', I need to back this stuff up with fact and sources. Covering my bases....
Posts: 18 | From NH | Registered: Apr 2006
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