Lyme questions

[Alexandra90]

I'm trying to learn more about Lyme disease, and would be very grateful for some answers on a couple of questions.

1. Lyme disease and ME can have very similar symptoms, but are there any symptoms pointing more to Lyme? I have a lot of neurological symptoms (Internal vibrations in left side, severe vision overload, twitches and jerks, light and noise sensitivity, position based tremors, muscle stiffness, restless legs in whole body)

2. Are the labs reliable and safe? I'm absolutely not questioning Lyme disease, but I'm a bit skeptical about the testing since it seems almost everyone test positive for something?

3. If you don't have the money for treatment in Germany, what other options exists?

 

[Markus83]

1.) Your symptoms might well come from Lyme disease, but they are not specific. What I would recommend: See a neurologist to rule out other possibilities than Lyme disease (but be careful: They often diagnose chronic Lyme as Multiple Sclerosis, which gives you a completely false treatment). Get a blood test done for Lyme disease. Most important: Western Blot (not just Elisa alone). Then report your results.

2.) The tests are neither reliable nor safe. In Germany we have a couple of so called specialized labs, but I don't recommend them, because I have the feeling that they produce many false positive results (just a feeling, not based on scientific figures). If you get tested positive for Lyme in a normal lab, there is a very high probability that your symptoms come from LD. On the other hand, if you test negative, that means nothing. My Doc (a german specialist) conducted a study, which showed that IgG Western Blot is positive in only 65 % of patients. Some studies report only a sensitivity of 30 %. Get a test done in a normal swedish lab. If it is negative, consider to send another sample to another laboratory, maybe in Germany (they have much experience with those tests - but don't send to a so called special lab). I can give your adresses of respected labs.

3.) I've seen a couple of patients from Sweden at my doc. So it seems very hard to get a Lyme treatment in Sweden - if at all. To my best knowledge, there is nothing that comes close to antibiotics in Lyme disease. So if you have the disease (get the tests done first!) you have to get antibiotics somehow. But lets talk about that when you have your test results.

 

[Helen]

Ask your GP for an IgM and IgG test if you haven´t had them yet. It would be an advantage if they use a lab that presents the result in numbers, not only as negative or positive.

If they are normal , you might still have a Lyme infection as some of us don´t produce antibodies normally. I would then ask for a PCR test that is available at some labs mainly at university hospitals in Sweden. If you PM me I´ll tell you more in detail, as I´ve been through a similar situation as yours.

It´s very difficult to get more than a 2-3 weeks course of Doxycycline in Sweden. Doctors who I know told me they and their family members had needed more, and even IV treatment, to get their health back. If you should have positive results and are denied full treatment you might well be able to claim that based on the results you had to go abroad to get treatment, and get some of it paid..

 

[Skippa]

1) Bell's palsey, acute fevers (some may say ME for that too though), erythema migrans (bullseye rash) either simgle or disseminated, extreme tiredness attacks (more sleepy/syncope than the fatigue/run down of ME), off the top of my head.

2) Antibody test, confirmed at a later date by another test, is surely pretty conclusive? (Not sure what others will say about that).

 

[Alexandra90]

Thank you everyone for your help

What is the difference between IgM/IgG, ELISA and Western blot?

I will demand a test from my local hospital as a first step. I think my neurological symptoms indicates that there is a good possibility that there is something more going on in my body. However I had a negative MRI about one year ago without contrast though. I had very few bloodtest though besides blood status and the "routine tests" like thyroid.

My neurologist said I have uneven reflexes. More sensitive in left side. Two doctors said my reflexes are uncommonly "jumpy", and that it could indicate that there is something wrong in CNS. I am surprised that they did not get to the bottom of it when I think back. Maybe because MRI was clear.

 

[Markus83]

"What is the difference between IgM/IgG, ELISA and Western blot?"

IgM = antibody in the early phase of the infection
IgG = antibody in the later phase of the infection (this is where you belong to)

Many doctors think IgM indicates active infection and IgG past infection. This is false as stated above.

Elisa = search test, which shall be highly sensitive but not so specific
Westernblot = shall be highly specific to confirma Elisa results

-> This is just theory and has been proven to be false, but nonetheless most physicians believe in it. Western Blot is more sensitive and more specific than Elisa, so Elisa can be skipped. Because Western Blot is normally only done when Elisa is positive, you should under all cirumstances look that Western Blot is done, even if Elisa is negative. You can pay it on your own, it's not that expensive. Good luck!

 

[svetoslav80]

Have you noticed being bitten by a tick? Have you noticed bulls-eye rash on you? Do you often walk in grass / forests / areas where there are ticks? You can still test with Western Blot, but if the answer to these questions is "no" then the chance is small that you have lyme.

 

[Alexandra90]

Have you noticed being bitten by a tick? Have you noticed bulls-eye rash on you? Do you often walk in grass / forests / areas where there are ticks? You can still test with Western Blot, but if the answer to these questions is "no" then the chance is small that you have lyme.

No rash or any characteristic signs. But I been in nature a lot. And these neurological symptoms does not seem so common in ME, even if it possible of course. when I think back my first symptoms was neurological. I know ME patients also experience neurological symptoms, but they seem to not be this severe?

 

[Vojta]

Thank you everyone for your help
My neurologist said I have uneven reflexes. More sensitive in left side. Two doctors said my reflexes are uncommonly "jumpy", and that it could indicate that there is something wrong in CNS. I am surprised that they did not get to the bottom of it when I think back. Maybe because MRI was clear.

I have this hyperreflexia too. I think this is common for ME. Neurologists ignored it because I had normal MRI too.

And these neurological symptoms does not seem so common in ME, even if it possible of course. when I think back my first symptoms was neurological. I know ME patients also experience neurological symptoms, but they seem to not be this severe?

My observation is that people with severe neurological symptoms are less likely to write on the forum much because writing,reading,thinking is extremely difficult. For this reason I wasn't able to use this forum for a long time. And I'm pretty sure now I have ME. And my worst neurological symptoms (all you listed) were actually caused or made permanently worse by long term antibiotics for false lyme diagnosis with all my Western Blot tests being negative.

So I agree with others here. Get Western Blot test and maybe get it at different times or different labs because it can change in time. Also be sceptical about alternative tests like LTT which generates false positives and are not reliable at all. And wrong atbx treatment can be devastating if you in reality have ME or any mitochondrial dysfunction.

 

[IreneF]

1) Bell's palsey, acute fevers (some may say ME for that too though), erythema migrans (bullseye rash) either simgle or disseminated, extreme tiredness attacks (more sleepy/syncope than the fatigue/run down of ME), off the top of my head.

2) Antibody test, confirmed at a later date by another test, is surely pretty conclusive? (Not sure what others will say about that).

Antibody tests are not reliable. Diagnosis is based on symptoms and history, with testing as a final, confirmatory step. Sorry.
https://www.cdc.gov/lyme/diagnosistesting/index.html
https://www.cdc.gov/lyme/diagnosistesting/labtest/otherlab/index.html

 

[Art Vandelay]

Do you react badly to antibiotics? Since I got sick, I've always had odd reactions when taking antibiotics which may indicate I have a bacterial infection like Lyme.

My symptoms after taking antibiotics include fever, chills, tachycardia, headache, muscle pain and anxiety which could be a sign of a Herxheimer Reaction: https://en.wikipedia.org/wiki/Jarisch–Herxheimer_reaction

My Lyme tests were equivocal positive but, combined with the Herx Reactions I get from antibiotics has been enough to convince me that I have a chronic bacterial infection that may be Lyme.

 

[barbc56]

My Lyme tests were equivocal positive but, combined with the Herx Reactions I get from antibiotics has been enough to convince me that I have a chronic bacterial infection that may be Lyme

It could be a herx reaction but another possibility is that you are sensitive and/or allergic to the antibiotics.

I find it confusing how it's determined which is happening.

 

[Skippa]

Antibody tests are not reliable. Diagnosis is based on symptoms and history, with testing as a final, confirmatory step. Sorry.
https://www.cdc.gov/lyme/diagnosistesting/index.html
https://www.cdc.gov/lyme/diagnosistesting/labtest/otherlab/index.html

Ah, my argument would be that false antibody tests may not be reliable (agreed) but positive ones are pretty hard to argue with, eh?

 

[adelheid55]

Where would you go to in Germany? We are from Germany, that's why I ask.
And no, you don't have to remember a tick bite and don't have to have a rash. also no, not everybody is diagnosed with Lyme. For example I'm not.
Our daughter has Lyme but we/she doesn't rememer a tick bite and or a rash .

 

[Hugo]

1.) Your symptoms might well come from Lyme disease, but they are not specific. What I would recommend: See a neurologist to rule out other possibilities than Lyme disease (but be careful: They often diagnose chronic Lyme as Multiple Sclerosis, which gives you a completely false treatment). Get a blood test done for Lyme disease. Most important: Western Blot (not just Elisa alone). Then report your results.

2.) The tests are neither reliable nor safe. In Germany we have a couple of so called specialized labs, but I don't recommend them, because I have the feeling that they produce many false positive results (just a feeling, not based on scientific figures). If you get tested positive for Lyme in a normal lab, there is a very high probability that your symptoms come from LD. On the other hand, if you test negative, that means nothing. My Doc (a german specialist) conducted a study, which showed that IgG Western Blot is positive in only 65 % of patients. Some studies report only a sensitivity of 30 %. Get a test done in a normal swedish lab. If it is negative, consider to send another sample to another laboratory, maybe in Germany (they have much experience with those tests - but don't send to a so called special lab). I can give your adresses of respected labs.

3.) I've seen a couple of patients from Sweden at my doc. So it seems very hard to get a Lyme treatment in Sweden - if at all. To my best knowledge, there is nothing that comes close to antibiotics in Lyme disease. So if you have the disease (get the tests done first!) you have to get antibiotics somehow. But lets talk about that when you have your test results.

I think its mostly the NK-cell cd57 test that one could be sceptical about with the german tests (arminlabs). The Elispot test is usually not used in screening (diagnose) but I think its reliable since its commonly used in research.

A better alternative could possible be Tickplex. I think its sold by arminlabs aswell but its a different company. Its an Elisa test (commonly used in screening of infections) and you could test for several infections in the same blood test. Its supposed to be very sensitivy, I dont know what the price is but even though its probably cheaper then a broad screening from armin labs its probably not cheap.

Its problematic testing for lyme since the standard test in sweden atleast is not that good. I know people in lab enviroment working with it and they know of a lot of possitive cases that became negative in the test. A PCR of synovial fluid is a much better test for example.

There are some really good testing equipment that most certainly can find it if you have it, but getting a test from this advance testing is really hard and only available in certain places.

The most common symptom with lyme is pain.. but it can give a lot of symtoms like your symptoms for example. I myself got a tick on the knee and weird rash from that (not the common bullseye) and from the knee I got strange nerve sensation that went on to be pain later on. In the beginning I had a constant low grade headache and stiff shoulders. Now its mostly pain in muscles but there are other symptoms aswell.

 

[Alexandra90]

I have this hyperreflexia too. I think this is common for ME

Did you also have uneven reflexes? Mine are uneven also. I never heard of this being a sign of ME? Must be an interesting aspect for researchers.

I also have position based tremor, which I developed later. If I hold on to something in a certain angle I get visible tremor.

 

[msf]

Have you noticed being bitten by a tick? Have you noticed bulls-eye rash on you? Do you often walk in grass / forests / areas where there are ticks? You can still test with Western Blot, but if the answer to these questions is "no" then the chance is small that you have lyme.

Got any figures to back that up?

 

[msf]

It could be a herx reaction but another possibility is that you are sensitive and/or allergic to the antibiotics.

I find it confusing how it's determined which is happening.

Could it? What kind of allergic reaction are you proposing here? I may be ignorant, but I am not aware of any allergic reactions that mimic the Herxheimer reaction.

 

[msf]

I think the basic situation is this:

Standard tests do not diagnose all cases of Lyme.

Non-standard tests may give more false positives.

There is not a good method of deciding which gets closer to the true percentage of people with Lyme, as there is no ´gold standard´ in chronic Lyme.

Therefore, most doctors (and some people on this forum) believe in ´first do no harm,´ and therefore would rather underdiagnose than overdiagnose Lyme, given what they believe about the dangers of antibiotics.

Other people (including myself) do not necessarily agree with ´first do no harm´ in all cases, and are willing to take antibiotics based on the likelihood of having Lyme (and I would accuse most doctors of a double standard here, as they are often willing to prescribe antibiotics for something that often turns out to have been a virus - yes, the risks of a short-course are probably smaller, but then the rewards are also probably smaller).

 

[Alexandra90]

Which are the safe and reliable labs? Any lab I should avoid? I'm mostly sfraid of getting a fake answer. I read about labs that always give out positive tests.

I'm very interested in Tickplex.