I was just told by a primary care physician that if one has Lyme Disease, their Sed Rate and CRP would be elevated. He believes I do not have Lyme because my Sed Rate and CRP are not elevated, in fact very low. He didn't know what to make of my CD57 being so low and asked if I had an HIV test which of course I did and it was negative. So, how many of you diagnosed with Lyme had elevated sed rate and CRP? Is this another false perception by a physician about Lyme Disease?
My SED rate was high and my LLMD told me that is *unusual* for Lyme. I also had elevated CRP, but just slightly out of normal range. My CD57 was normal, so I guess we're opposites!
To my (medically untrained!) knowledge, both the SED rate and CRP are non-specific markers for inflammation. Neither one can be used alone diagnostically for Lyme or any condition (again, to my limited knowledge). So I don't see how your levels being normal rules out Lyme? I'll be interested in what others say.
I can relate to struggling with your PCP. Mine was very much at odds with me when it came to Lyme.
I forget, but I think that you are awaiting your Western blot results? If so, try to sit tight and review those results with a doctor who has more experience with Lyme. Don't let this doctor get to you, it doesn't sound like he has answers for you.
Thank you for your response. We are really opposites! No, I am not awaiting the Western Blot, I believe that is ginak. I had a Western Blot, but not the Igenex Western Blot yet. The Western Blot I had was totally negative. I was tested for co-infections also which were negative. I had the Elisa about three times over this past year and it was negative. So why is my CD57 test 38 and why am I so sick? My alternative MD tried to guess by my symptoms and my CD57 that it was chronic lyme and put me on a trial of doxy. I had a bad reaction to the doxy, so I stopped. I was getting IVs before all this at the Fibro and Fatigue Center in Philly. I had severe herx to the first two IVs. They advised me that this reaction is due to my body fighting a chronic infection. They also suspected Lyme. The only abnormal tests so far are the CD57, my EBV was 5,120 (unheard of) and my vitamin D at one point was 5. Who knows, maybe I don't have Lyme. You think one of the tests would have been positive by now.
I will be interested to hear what others say to, but I put more faith in what a LLMD has to say vs. a PCP.
Wonko was correct. Those test are non-specific markers of inflammation. So is the ANA. The sed rate can indicate vasculitis if elevated so this can be positive in lyme as the disease causes vasculitis. My sed rate and CRP are also very low. I would say it is false perception by a physician in my opinion.
My sed rate used to be very low, but when I had it checked in January, it was increased. My CRP is within normal limits. The idiot rheumy that I saw in January told me that it was nothing to be concerned about...........WHATEVER!
Yes, I thought he didn't know what he was talking about. I run into this time after time again. Am I ever to trust doctors? Then they run tests which come back abnormal and tell you it's nothing to worry about. Sorry, I am just so frustrated.
oops, sorry I got mixed up about your test results.
I started treatment based on a clinical diagnosis. To me, my Igenex Western blot (which had a couple of bands, but was CDC positive) didn't mean as much as my response to treatment.
My PCP gave me a laundry list of reasons why what I have isn't Lyme, from the pattern of my stiffness, to my response to steroids, to my lack of tick bit/rash, and so on. She refused to order a Western blot or to do a trial of antibiotics. But at the same time, she had no idea what was wrong and actually told me to give up on getting a diagnosis/treatment. Had I listened to her, I can't imagine where I would be, or where I would be heading!
With any treatment, you and your doctor need to weigh the dangers against the benefits. For me, the risk of taking antibiotics for this amount of time (just under 3 months and counting) is small compared to regaining my life.
I don't recall a lower limit on sed rate (whcih doesn't make sense to me), but anyway, my first blood test was 1 mm/h. On one of the health pages it mentioned that low sed rate is common in CFS patients. I mentioned this to the ID and he had never heard of this correlation. I got remeasured and it was 4. So maybe the test itself is also not so consistent. My LLMD didn't comment on my sed rate being low as an indication (for or are against) Lyme.
Interesting. Well here is the source on low (but normal) sed rates in CFS patients. Dr. Cheney explains somewhere (over the internet) why this happens, but I can't remember what that reason was
.Sed Rate (ESR) --- The most consistent laboratory abnormality in patients with CFS is an extremely low erythrocyte sedimentation rate (ESR), which approaches zero. Typically, patients with CFS have an ESR of 0-3 mm/h. An normal ESR or one that is in the upper reference range suggests another diagnosis.
i realize it is 2012, but i am experiencing the same frustrations as all of you. i have had 3 of 4 c6 peptide ELISAs positive. all symptoms. negative WB and AB tests ... so Infec Doc says "CRP IS NORMAL. NO LYME."
i swear it's a conspiracy. how can everyone in the country continue to report the same frustrations wiht doctors refusing to dx lyme?
It is disgusting. The IDSA teaches their members well. Unfortunately for us, they are teaching their members to ignore symptoms and history in favor of a strict interpretation of blood tests that were not defined to be diagnostic in the first place! A Western Blot at IGeneX would be helpful as they show other Borrelia specific bands that are not part of the CDC surveillance criteria. I was CDC negative on my WB but IGeneX said I was positive beause of two Borrelia specific bands. Clearly, I had Lyme Disease.
ID doctors are the worst about Lyme. Find yourself a good LLMD (Lyme Literate M.D.) to get diagnosed and treated properly. We don't usually put their names on web sites as many of them have been harrassed by ID doctors who try to shut them down. They don't like doctors who openly disagree with them. But if someone here knows one in your area, we could send a private message to you.
You can also check www.ilads.org for a referral. There are other Lyme advocacy groups that offer referrals, too, but one from a local Lyme support group would be valuable. Some doctors claim to be LLMDs or affiliated with ILADS, but don't necessarily know what they are doing.
There are people here who have similar stories as you. We are happy to help if you have more questions.
Please e-mail me privately
My dad I believe has lyme disease.
he was bitten up by chiggers supposedly but I believe a tick never got noticed Oct 2010. He had his first stroke in january 2011 with sed rate of 100 and CRP of 13 and now this January 2012 he just had his second more severe stroke. They say he has vassculitis but cannot come up with a reason for vasculits. They did a lyme test last year but it was negative. is there a lyme specialist in the northern indiana chicago area or some one who can retest him for lymes. His doctors think I am crazy but he went downhill three months after bug attack
I'm sure Ricobord will check in soon, but thought I'd give a quick reply too.
Good for you for taking action for your father. Although many doctors will not diagnose Lyme without a tick being stuck in the skin (embedded) for at least so many hours, and without seeing a circular rash, Lyme doesn't play by those rules. I had Lyme, and never saw a tick or had a rash.
The ticks also carry other diseases that need separate testing and different meds, and seeing a Lyme specialist is also what I would do in your situation. That may be confusing the current docs, because each of of those 'co-infections' has a different set of symptoms from Lyme and from each other, and since half of Lyme ticks carry more than one disease, it gets complicated pretty fast, and the docs get confused if they are not expert in Lyme etc.
Here are three ways you might find a Lyme doc:
1 -- email to
contact [at] ILADS [dot] org
and tell them where you are and how far you can travel to get to a Lyme doc. ILADS is short for International Lyme and Associated Diseases Society, and it's the main voluntary group for MDs who understand Lyme and treat it aggressively. The docs are not screened as far as I know, so if you get one that doesn't suit your father, the ask for another name from ILADS.
2 -- google/search:
and see the links there. There are support groups and organizations that can guide you to Chicago-area Lyme docs. Again, if a doc doesn't suit, try again till you get a doc you feel comfortable with.
3 -- Post your message again, but do it by starting a new message thread so it will get more attention, since not everyone reads all the way to the bottom of some of these long, old message threads. Highlight and copy your message you posted above that is addressed to Ricobord, then scroll up to near the top of this page, you will see an orange-brown button called 'post a question' -- click that, then put a title like "Need LLMD in Chicago area", and paste your message there. The question does not get addressed to anyone in particular and will pop up right away when you click 'post' or whatever the word is that's there (I forget!).
And if the Lyme docs don't diagnose Lyme, they may have other ideas.
By the way, you will see the term LLMD, which is not a title or degree, but just patient slang for 'Lyme-literate MD', meaning an MD who thinks progressive thoughts about Lyme. No doc calls him/herself an LLMD, but you'll see the term here and elsewhere, as shorthand for a doc who understands Lyme.
And if your father doesn't have Lyme or co-infections, an LLMD may have other ideas, since LLMDs are used to thinking creatively.
Best wishes, and do let us know how we can help. Your father is very lucky to have you fighting for him.
and PS, forgot to say, we do NOT post the names of Lyme specialists here in the public part of the website, because in some areas, MDs get harassed by the local and state medical boards for treating Lyme aggressively.
In some states, like Texas, there are nearly no Lyme docs at all because they have been run out of the state.
So we are very protective of our Lyme doc's identities. We need them to be around!
Hi, Im looking for the name of a Lyme doctor in the Uk, Spain or France, but could be anywhere in Europe really. Please email me to ***@**** I have been fighting this disease for 2 years and GP's on the UK dont seem to understand it. Would very much appreciate some advice, please take 2 minutes to send me an email with an address. Identities are so protected that seems impossible to get one. I understand they can be harrased by the medical community, just for having more knowledge and thinking outside of the box... I live 2 hours from London, but would travel anywhere to get some help. Thanks.
Private email addresses are discouraged (and asterisked out) for a good reason. I wouldn't put mine on a public forum.
But there's a private message function here, a bit hard to find, but it's for the time when doctor's names will be mentioned and private names/emails can be given---- more or less safely. (Always know the person you're giving out such information to----- really!)
One way to send a private message is by accessing your Inbox.
That's found at the top of the screen (dark blue bar) "My MedHelp"
Click on that and you'll find "Inbox" listed.
From there you can put the name of the person you want to PM and send your message.
PMs are supposed to be 'private'. But there are times when MH can access them---- if a grouch decides s/he doesn't like you and reports you. There's always at least one on each forum. LOL
The thing is though---- in my Inbox I only have some older ones and not any of the more recent ones. ???
My sed rate was normal, but my CRP was very high. IMHO, sed rates are useless except maybe in the case of babs. I'd think if you had LD, you'd have an elevated CRP. All that test shows is you have inflammation somewhere in your body. Judging from the responses here, I guess I was wrong.
Check with your doctor but the normal value for an ESR is 0-20. Anything higher than 20 is significant. My sed rate was 0. I tested positive with Western Blot and Elisa but only had band 41 show up reactive so the "interpretive" result for LD was negative. Soooooo, bottom line is they need to come up with better testing.
Sorry to hear what you are going through. A couple of suggestions:
1. To get better visibility for your message, start a new thread here by clicking on 'Post a Question' [it's in an orange-y colored box near the top of this screen] and title it something like "Need LLMD in UK/Spain/France/Europe generally", and then paste the language you posted in this thread. That will catch someone's eye more surely.
2. I wouldn't post my email address here as you did, your address may get picked up and spammed, and it's also against the rules of the site. If you want to remove that message with your address in it, you can contact a moderator here. If you want help doing that, let us know.
3. Now down to your question, how to find an LLMD: in addition to posting the question here as you've done, I've begun to think the most effective way is to search online (google, whatever) for a search such as:
"Lyme disease" UK
"Lyme disease" Europe
The reason to put the quotes around 'Lyme disease' is so that you don't end up with a page of links to Lyme Regis. (I've done just that.)
You can vary the search by country or area, to refine the details of the hits you get from a search, and tho this sounds very hit and miss, I find that it often brings up the names of local Lyme-related groups or organizations who have a referral function to help find a suitable physician.
You can also narrow the search such as:
"Lyme disease" Cornwall
"Lyme disease" Coventry
or whatever applies. If you get too few hits, broaden the search a bit. 'Coventry' might be too narrow; 'Warwickshire England' or 'Midlands England' may be better.
4. email to
contact [at] ILADS [dot] org
and tell them where you are located and how far you can travel. They will send you back names of ILADS member-physicians if they have any in your area.
(ILADS [International Lyme and Associated Disease Society] is an international organization and has member MDs in many countries. There is much interesting information on its website generally, but don't get overwhelmed by it. One helpful portion is called Dr Burrascano's treatment guidelines. Don't be overwhelmed by its detail, but know that it's there when you are ready to do some reading.)
The first thing to do, however, is to re-post your message in a new message chain so it will be better seen.
Let us know how we can help -- best wishes to you --
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