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» LymeNet Flash » Questions and Discussion » Medical Questions » I'm fed up....please read. I need advice on ESR.

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Author Topic: I'm fed up....please read. I need advice on ESR.
sian333
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I'm feeling a bit annoyed and need to vent.

(I posted my story + all my symptoms here so you can read if you want to: http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/95111)

Just back from a Docs visit and the doc said he highly doubts I'd have Lyme. I'm being tested for it at the moment in Australia, as I was travelling when I believe I may have gotten a virus. We had LOTS of house mice which always got into my items of clothing / linen, and it was terrible. We tried to get rid of them. I read mice carry ticks, lyme, and co infections.

Anyway, the doctor just stared at my blankly and shrugged. He said my ESR reading was normal which means I had no infections, and that he doubts I'd have Lyme or a co-infection.

Is your ESR reading (erythrocyte sedimentation rate) normal with Lyme?

My muscles and joints have been in a lot of pain especially this week and it's getting worse each week. I still get horrible palpatations especially after eating and before going to the bathroom. I get a lot of postural tachycardia, and my head aches and ear pain are getting worse too. right now I have the worst backpain and thigh pain, i feel like i'm carrying a baby (which I'm not, haha).

I saw this particular doctor because he's from Canada and I thought he'd well educated on Lyme...but he just made me feel stupid. He said nothing is wrong with my blood tests so he doesn't see why I'm complaining.

I'm getting the Lyme results next week as they have to be sent to a special lab, as not many places in Aus test for Lyme.

I'm just worried I'll get told nothing is wrong and to go away. You simply KNOW when something is wrong with your body.

He said if I had Lyme it'll show up on the lab tests when we get them back...is this true?

Thanks for reading...<3

Posts: 51 | From Australia | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
lymewreck36
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Hello Sian333:

Order the Igenex tests from their website. Follow the directions for taking the blood and over night mail the results like they request, on the correct day of the week. It's all in the directions that come with the kit. Order the full battery of tick born infections.

Wait for results. If positive, go to www.ilads.org for doctor referrel.

The tests are expensive, but loosing your vitality is a lot more expensive. Nothing to gamble with.

HOpe that helps,
Mary

Posts: 1014 | From North Carolina | Registered: Aug 2003  |  IP: Logged | Report this post to a Moderator
Pinelady
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If you have not seen the movie UOS. Under Our Skin is very informative.

Lyme can be there and almost everyone in the movie had normal looking blood work.

I had normal to great looking blood work. Which is a good clue to suspect Lyme in someone that says they are sick, if you ask me.

If you don't want to get the pricey complete tests you can just get the IGM/IGG. Remember if your tests show any bands it is possible you have Lyme.

My sed rate was always 2. Who would have thunk. I was dying with a sed rate of 2. It means nothing in Lyme.

[ 06-03-2010, 11:37 AM: Message edited by: Pinelady ]

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
sian333
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Thanks for your responses. : )

I wish I could get a test with Igenex, but I'm in Australia! I've just emailed them to see if they can advise me of anything.

The lab here in Australia that is testing for it told me they've only ever run a test once for Lyme before! I'm not very excited to hear that!

All my blood work is normal. The doc said if I had an infection my ESR would be raised...but everything I've read about Lyme is telling me this isn't true....I've read it hides very, very well.

Posts: 51 | From Australia | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Marrit
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I thought ESR measured inflammation? I think it isn't specific for infection, but not sure. Here's some info from wikipedia:

Although it is frequently ordered, ESR is of limited use as a screening test in asymptomatic patients. It is useful for diagnosing diseases, such as multiple myeloma, temporal arteritis, polymyalgia rheumatica, various auto-immune diseases, systemic lupus erythematosus, rheumatoid arthritis, and chronic kidney diseases. In many of these cases, the ESR may exceed 100 mm/hour.[5]

It is commonly used for a differential diagnosis for Kawasaki's disease and it may be increased in some chronic infective conditions like tuberculosis and infective endocarditis. It is a component of the PDCAI, an index for assessment of severity of inflammatory bowel disease in children.

The clinical usefulness of ESR is limited to monitoring the response to therapy in certain inflammatory diseases such as temporal arteritis, polymyalgia rheumatica and rheumatoid arthritis. It can also be used as a crude measure of response in Hodgkin's lymphoma. Additionally, ESR levels are used to define one of the several possible adverse prognostic factors in the staging of Hodgkin's lymphoma. There is also a wintrobe method.

The use of the ESR as a screening test in asymptomatic persons is limited by its low sensitivity and specificity. When there is a moderate suspicion of disease, the ESR may have some value as a "sickness index."

An elevated ESR in the absence of other findings should not trigger an extensive laboratory or radiographic evaluation.

Posts: 277 | From Pennsylvania | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
massman
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Tests are mostly useless. This is a fact.
Igenex is dismissed by many docs.

Why such an obsession with tests here ?

Clinical diagnosis = history, physical exam, symptom survey.

NO body fluids.

Docs have to take the evidence and make an informed decision ! [Eek!]

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n.northernlights
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I was thinking, I have seen on some other forums that some patients complained that their good doctors moved to Australia.
I remember one moved from Canada, and several rom the U.K.

There is hardly any canadian doctor that knows about lyme.

I do not think ESR has anything to do with borreliosis.

Wait a minute, I have seen a website once from Australia, that mentioned lyme I think, it was in the discussions about the bionic 880 (infrared device, some here did go into remission by using a combination fo homeopathics and infrared) but that is certainly in the alternative department.

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lymie_in_md
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quote:
Why such an obsession with tests here ?

It a psycosis of American society to only believe what you can see. If you see it on a piece of paper, say babesia, well that is the problem and all treatment goes there. But what if it is a false positive? You could go 10 years fighting a phantom and getting no where.

Just a question: how likely is my example, my daughter was tested positive for hep-c, didn't have symptoms. So we tested again, the second test was negative. Gee, which one is correct? Of course the ducks believe in the second test because it was more sensitive. But, she doesn't have symptoms ... must be something to what massman is saying.

--------------------
Bob

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Lymetoo
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ESR really doesn't have anything to do with Lyme disease.

Many here have LOW sed rates due to hypercoagulation. If your blood is thick, the ESR will be off.

My sed rate was always low... like a 3. I have hypercoagulation. Infection often causes hypercoagulation.

--------------------
--Lymetutu--
Opinions, not medical advice!

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sparkle7
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I don't know about any testing but it may be bartonella... I believe mice carry it & if you were bitten by a flea it may be a possibility. Even being around mouse droppings can cause serious illnesses. There was an outbreak on Native American land, maybe 5-10 years ago, were people were dying from an illness carried by mice.

The testing in most cases is inaccurate. I would try to start some kind of treatment ASAP.

The newly discovered retrovirus XMRV is also associated with mice.

This is serious stuff. Try to find a doctor who isn't a dumb a$$ or start some kind of herbal protocol ASAP. Stephen Buhner has a good book on herbs for Lyme.

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n.northernlights
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maybe go read around on some more forums.
ME (chronic fatigue) forums too, and look into xmrv and which doctors are researching that in australia. They might know about lyme, maybe, maybe not.

i googled lyme australia and got some hits, like http://curezone.org/forums/fm.asp?i=1130821#i looks like you need to get tested at a lab specialising in lyme like igenex, or one of the german labs the german patients use. Is there any british lab that does good lyme tests in the UK?

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lymewreck36
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I don't see why Igenex can't mail a test to you, and you can't overnight it to them. I live in Switzerland, and a lady here ordered the tests from Igenex and had them done.

Mary

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littlebit27
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My sed rate is always low. Even when you can clearly see my joints are swollen. My fingers get so swollen sometimes that I can barely bend them.

I do agree Lyme is a clinical diagnosis, but I also understand the want to have a positive blood test. Not until I got my positive from Igenex did I feel a little bit better about it and I'm still worried about it lol.

I know a lot of us understand what it means to be dismissed by doctors. It really sucks!

Oh and back to blood work. All of my blood work in the beginning was normal but as time has gone on different things have started going crazy. My RBC count is crazy, then there is a blood test that suggests the body is fighting an infection and that started to rise. I'm waiting for my latest blood work I got done on Tuesday (oh that reminds me I need to call the docs office, lol) to see if anything else is crazy.

But anyway the point was in the beginning no one could find anything wrong with my blood, my X-rays, my EKG. And when I started to suspect Lyme I thought to myself, well no wonder they can't find anything! I'm sure many people will tell you they had normal blood work, not even including the lyme tests, just CBCs, CMP, normal blood work.

Try Igenex and see what happens, maybe they can help or maybe they could direct you to a lab that could help if they can't.

Good Luck to you.

--------------------
*Brittany Lyme Aware on FB*
http://littlebithaslyme.wordpress.com/

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sian333
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Thanks everyone. I'll need to push it with the docs. They are REALLY useless sometimes. They said If I'd gotten anything ''serious'' from a mouse I would have died by now...as this has been happening for almost 7 months.

My ESR was 2mm.

Another annyoing thing is i can always feel my pulse in my feet. It's so annoying! I also get this strange static / rubbing feeling on my chest and sometimes my foot when I can feel my pulse. No docs know what it is...or seem to care.

I have 2 weeks worth of Doxycyline, should I start taking them? Even though the docs haven't said anything. I was given the Doxy for travelling if I came down with anything. Thoughts?

I emailed Igenex too. Fingers crossed.

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Pinelady
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I would take the Doxy. But when you test I would be off of it for at least 10 days before you test.

Many docs say the sickest patients will not produce antibodies to be seen in the test unless you kill

some first by stimulating the system to be able to see them...

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Brussels
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Don't wait for tests to come positive. I did, they never came. I was initially positive (twice positive through westernblot) and it turned negative by itself, without treatment, so you got to imagine what happens to antibodies...

I was positive but doctors didn't treat me either! Reason? Because they said I already had gotten 2 weeks of doxy after my bulleye rash, so the positive test was a in fact, a false positive!!!!

By the third time a lyme doctor tested me, it came finally negative. My health was falling apart, very similar to your description.

I had heart issues, breathing issues, night sweats, arthritic pains, some fixed, some moving around, stabbing pains in my head, tinitus, eye floaters, extreme light sensitivity, inumerous food allergies, extreme fatigue, numbness here and there going on, GI issues, extreme hard neck muscles etc etc....

BUT my lyme test came negative, so in fact, it was all in my head according to them!!

My lesson was: never wait for a positive test to start treatment. Even if you got one, they'll give you 2-6 weeks of antibiotics and declare you cured.

If you insist, they'll load you with cortisone to keep inflamation lower, but that can almost kill you and make the lyme situation worse.

You'll be sent to the rheumatologist, gynecologist (if you're a woman) for hormonal problems, cardiologist for heart pains or abnormalities, dentists one after the other (because eventually you'll get troubles there), ...

...neurologist to see why you're getting eye floaters, numbness, headaches, endocrinologist to check why you are sweating while you shouldn't and why are you freezing when you shouldng, and so on.

So the best way is either to look for a lyme specialist (possibly difficult in Australia) or self treat with herbs or abx, or whatever you find could help you. Or move countries.

I would self treat, NO DOUBT. But if I had a lot of money , I would move and treat abroad, where you could find help.

Have you seen the Bionic threads? Some people went succesfully to Germany to treat using the Bionic. I got well with home treatment using a similar protocol.

The worst mistake is to wait too long. Some people take decades to fall VERY sick. Some fall very sick in weeks or months. I was that last case.

I sent you a PM.

Posts: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
   

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