• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Lyme

Hello I got results that I most likely have lyme. The one thing I was sure of is that I did not have lyme. I am not beleiving this. I got sick after flue how can that be lyme. We dont have lyme in my country and when I have been travelling I have been going where I am in the swimmingpool all day. And why then did I not got sick after travelling. I got sick in the middle of the winter. If I have lyme do I then not have M.E just lyme. I did not tested positive for Borellia but my cd57 was very low, the cytokines were abnormal, nagalase activity too high and the prostaglandine too high. Is this good news or bad news, is in it very hard to get rid of lyme.
 

vamah

Senior Member
Messages
593
Location
Washington , DC area
Well, there are other pathogens that can cause a low cd57. HHV6 is one and I am sure there are others.

If you did not test positive for borellia, I am wondering why you are so sure you have lyme. True, lyme has a lot of false negatives, but if you have not been in places where there is lyme, you should probably test for other things (if you haven't already, you didn't say).

What kind of lyme test did you get. Was it a standard test or from a specialty lab like Igenx? If it was from a specialty lab then it is less likely to be a false negative.

On the other hand, lyme symptoms can take months to show up and doctors are really not sure about all the ways it can be transmitted, so it is possible, even if it seems very unlikely.

Lyme is hard to get rid of, but I always feel like having any answer is better than no answer. It is treatable. I know someone who recovered from chronic lyme diagnosed years after the original infection. I would get more tests, think positive and keep us updated on how you are doing.
 
I got tested with Meirleir. I am not sure I got lyme but Meirleir thinks I have it. I dont understand any of this

ZONP



BART Bartonella henselae IgG Negative Negative

BORG Borrelia burgdorferi EIA IgG Negative Negative

BORM Borrelia burgdorferi EIA IgM Negative Negative

QFIG Coxsiella burneti phase I IgG Negative Negative

QFIIG Coxsiella burneti phase II IgG Negative Negative

QFIIM Coxsiella burneti phase II IgM Negative Negative

QFIM Coxsiella burneti phase I IgM Negative Negative

RCO Rickettsia conorii IF (IgG) Negative Negative
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
I got tested with Meirleir. I am not sure I got lyme but Meirleir thinks I have it. I dont understand any of this

ZONP

BART Bartonella henselae IgG Negative Negative

BORG Borrelia burgdorferi EIA IgG Negative Negative

BORM Borrelia burgdorferi EIA IgM Negative Negative

QFIG Coxsiella burneti phase I IgG Negative Negative

QFIIG Coxsiella burneti phase II IgG Negative Negative

QFIIM Coxsiella burneti phase II IgM Negative Negative

QFIM Coxsiella burneti phase I IgM Negative Negative

RCO Rickettsia conorii IF (IgG) Negative Negative

I believe those would be the results of PCR testing. Do you have results from Infectolab in Germany? That might tell us more.

Sushi
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
The first tests are EIA or ELISA testing which is not one of the more accurate tests. I'm not sure why anyone still runs them honestly.

I would not make a decision about Lyme without Western Blots or Infectolab testing myself. I think you're in good hands with KDM though and I would trust his interpretation. Maybe he has seen more testing than what you have posted?

Ema
 
Okey I got the results from Infectolab and I realised that I already got them just did not see them. Anyway the results are negative. Meirleir had that results when I talked to him and he says that everything indicates that I have lyme.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,076
Location
australia (brisbane)
Atleast there is more treatments for lyme then if u have cfs and antibiotics for lyme are alot cheaper then say antivirals or other treatments for cfs, so theres a plus to having lyme over cfs. Although im unsure of success rates of lyme treatments??

I know your confused by your test results, with them coming back neg then i would be looking elsewhere for causes other then lyme as already mentioned.
 

vamah

Senior Member
Messages
593
Location
Washington , DC area
Have a conversation with your doctor about why he feels so strongly that you have lyme to spite the negative test results. Ask him about other things that can cause lyme like symptoms and discuss whether you should do more testing before starting treatment. It may be that he hasn't communicated well his reasons for thinking you have lyme. You certainly need to understand the full picture before you begin treatment. I think sometimes doctors assume that things that are obvious to them are obvious to everyone, which of course they aren't, especially for those of us with cognitive issues related to our illness.

Just as an aside, I has testing for lyme last year by a specialty lab in the US. It came back pretty clearly negative (even my specialist said so), but I am still not convinced I don't have lyme since I have so many lyme-like symptoms. It is a terrible disease to detect with any certainty. You may just need to see if you respond to treatment to know for sure.
 
Messages
15,786
What should I think, do I have lyme or not. I think it is important for me to know.
I don't think that the lab tests for the relative of Lyme which exists in Iceland. He might be inferring that you have an infection because of some other test results + your symptoms, you might have that similar bacteria.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
What should I think, do I have lyme or not. I think it is important for me to know.


There are over 100 strains of Lyme and no tests covers them all. As Valentijn mentioned, when you talk to your doctor you could ask if you were tested for the strain that is found in Iceland. And certainly ask him what test results, symptoms etc., make him think you have Lyme (more properly called Borreliosis since "Lyme" is a town in Connecticut where one strain was found).

His report may clarify some of these questions.

Sushi
 
Okey now I am finally understanding this, I was tested for borrelia burgdorferi wich you find mainly in north america and can be found in Europe. I was on the other hand not tested for borrelia garinii wich you find in Europe. He was talking about this in the conversation I had with him but I really did not understand what he was saying. Now I do. But what I dont understand is why he did not test me for borrelia garinii, I have not even been to north america. Okey so now I understand this. And I know why he says I have lyme he told it was because of the low cd57, because of the results of the cytokines and too high prostaglandine. He did not say anything about my symtoms, he probably did not know them when I was talking to him so he is saying I have lyme because of this results I mentioned. Yes Sushi I will wait for the report and see if he is sticking with this and how he explaines it.


It is also very good advise to see how I will respond to treatment, if I find any difference in my healht. Thank you very much for your replies I was very confused but it is getting clearer for me to understand all of this. It would be also great to know if anyone has been told they have lyme because of the cd57, cytokines and too high prostaglandine.

Regards,
Íris
 
There are over 100 strains of Lyme and no tests covers them all. As Valentijn mentioned, when you talk to your doctor you could ask if you were tested for the strain that is found in Iceland. And certainly ask him what test results, symptoms etc., make him think you have Lyme (more properly called Borreliosis since "Lyme" is a town in Connecticut where one strain was found).

His report may clarify some of these questions.

Sushi


Yes and Sushi what does it means that there are over 100 strains of Lyme. I am not sure what strains means tried to translate it but came something weird. How many types of borellia do we have. More than these two garinii and burgdorferi. Sorry all my dumb questions I just dont know nothing about this.