I've had different Lab tests done since April 20th.
Now I'm just waiting till the end of May for my LLMD to get back from vacation and give me a verdict.
I saw my LLMD for the first time in early May
After taking all my symptoms down he said that Lyme was 90% likely.
I DID HAVE A TICK BITE IN MY NECK 30 YEARS AGO.
He wouldn't/couldn't give me a definite answer though on the Lyme verdict yet.
He pretty much dismissed my positive ELISA and Westerblot tests for unreliable (I see other docs take them into account).
He ordered a ELISPOT LTT, CD57+ and other co-infections lab test to be done in Germany.
I got the test back and got all 0's on the ELISPOT LTT. (heard this test is not done in the U.S.)
I think the ELISPOT LTT is supposed to show acute infections?? Still have to read on it.
I got a significant high positive score on Mycroplasma Pn.(50.4).
My CD57 number was 81 from a normal range of 100-360.
I guess that could hint that my immune system is still working to some degree and not totally down.
I took these tests results down to the ILADS conference (Austria) to ask what all this means.
I talked to the people (person) there from the lab where the tests were done.
I got the impression that they didn't think I necessarily had Lyme but that MYCROPLASM P. WAS THE MAIN PROBLEM.
Then I went to another well known Doctor and didn't really understand the answer.
I definitely didn't get a, "I suspect you have Lyme", answer.
He basically said something like Borrelia can connect/integrate with other pathogens and cause crazy problems??
Then I went to another well known Lyme specialist as she was walking out the door.
She said that the ELISPOTT LTT is not even used in the States, so she couldn't help me on that one.
She also commented that my CD57 result of 81 might give a hint that my immune system was not super, super weak.
I told her that I got a positive on my Westernblot from a 'normal'laboratory.
She basically said, that in that case she believed I had Lyme along with the Mycroplasm P. infection.
She mentioned that getting a positive on the Westerblot from such a lab, where false negatives are more common, was a strong sign that I do indeed have Lyme along with Mycroplasm P..
I understand that I couldn't expect to take my tests down to the ILADS conf. and get a complete diagnosis.
I'm definitely not trying to wish Lyme upon myself.
I'd just like to pin this down and get to fighting 'IT'.
The waiting period has just been difficult.
DOES ANYONE HERE HAVE MYCROPLASM P. but NOT LYME?
Opinions are welcomed till I meet my LLMD at the end of May. thnx.
Posts: 128 | From California | Registered: Apr 2012
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Mycoplasma p. was an opportunistic infection for us. We had lyme, strep and myco. Treatment for lyme will eradicate strep and I think most myco. We never treated the myco specifically.
Unfortunately there are no definitive blood tests, part of the reason it is so hard to get a diagnosis. Lyme is a clinical diagnosis, so you need to find a lyme doctor who will go over your symptoms with you.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Whoever at that ILADS conference said they did not think you had lyme, well, remember, not everyone there may have been there of the right "spirit" and may not have been ILADS educated but a bystander or in opposition and scouting out the event.
I know that sounds very "spy-like" but it has happened. In the states, we've even had some LLMDs visited by "spy patients" set up by the lyme-ignorers at the IDSA to clobbler the LLMD. More than a few times, LLMD have been called on the carpet after these sham patients cause trouble.
Also, remember that, here at least, it is illegal for a doctor to give a diagnosis to someone who is not officially a patient. Of course, they can remark on your test if you show them but they may want to avoid declaring lyme, for some reason.
And, maybe, they are new to all this and don't yet understand that no one gets two positive lyme tests, with history & symptoms, and does not have lyme. That would be beyond rare.
But the false idea of "false positives" is a serious cancer out there.
You had positive lyme tests, two, for crying out loud. That does not just happen out of the blue.
Many have mycoplasma p. in addition. Sorry.
And that needs to be addressed, for sure, but everything needs to be addressed, not just what one doctor chooses (unless it's a plan of action to do myco. p. first).
Are you positive that "LLMD" is actually a lyme literate doctor and is ILADS "educated"?
If so, I doubt one would dismiss your history and clinical presentation and tests with:
(quote): "He pretty much dismissed my positive ELISA and Westerblot tests for unreliable" (end quote).
I wonder if the politics there are not a wicked as here and that doctor may feel that by focusing treatment on the myco. p. he will not be ---
word loss -- in trouble for treating you and, maybe, the myco. p. treatment might cover all the bases.
But he may be pressure to not deal with lyme. The politics are simply grueling, as you are beginning to see.
But, I'd be looking for a real lyme literate MD who also knows about myco. p. and other stealth infections.
Now, if you have no choice, until you find a real LLMD, you might start with this other doctor and just keep to your own thoughts - doing the best to cover as many bases as possible.
After all that, and perhaps what the one doctor means is that right now, the main problem to address would be myco. p.
I'm sorry that this is all so difficult on so many levels.
Bottom line: you need an expert doctor who has courage and expertise well beyond average in these matters. We call them LLMD. Though not any official designation, that term is not conferred lightly.
And, if the LLMD is not well versed with myco. p., you may also need a doctor who is.
And they would need to coordinate your treatment, together. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While you wait, Gael (glm111) reminded at another thread, the importance of addressing parasites.
Now, just roll your eyes, take a deep breath and stay determined to hold on through yet another caveat.
And think of your body as one unique water park with skin on. Some of the inhabitants belong there; some don't.
As you know now as your head spins from discovery, lyme seldom travels alone. Over a dozen - maybe dozens - of infections can be transported by a tick.
Parasites are just one classification that also plays a huge part.
While you wait for your LLMD (?) to return (and determine the expertise of that doctor, you might consider this aspect. Getting some parasites out of the way can help other treatment work better.
Best to work with a LLMD or LL ND on this, if at all possible. And, I know certain herbs are no longer allowed in Europe but - if you find a naturopathic doctor or herbalist, they should be able to treat with herbs. "Should" being the key word here.
Best to find a LL ND or herbalist if you take this route as not all NDs or herbalists are LL and, even if treating "adjunct" stuff, they should be LL. (lyme literate).
Often, it's good to work with both a LLMD and a LL ND as each has their strong suit and, with both on your team, your chances are better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Pro Heatlh�s ME/CFS and Fibromyalgia Message Board
DrNicolson - 9/13/10
Questions about mycoplasma IgG level
Excerpt:
. . .
Dr. N: It is difficult to distinguish Lyme Borrelia from Lyme Mycoplasma n terms of signs/symptoms and their severity.
Both of these intracellular bacterial infections are commonly found in the same Lyme patients where they stimulate release of ROS, cytokines, etc.
and both release toxins, interfere with cellular metabolism, steal needed metabolites from cells and reduce mitochondrial function by damaging their membranes.
They both also invade peripheral and central nerves where they cause havoc, and can cause nerve cell death.
Both of these infections are also commonly found in the same ticks, but Mycoplasma spp. has the additional problem of being an airborne as well as an insect-borne infection.
Since they are both slow-growing intracellular infections, they usually don't show up immediately after infection (in terms of testing or symptoms).
And in some patients, they may not show up at all, if their immune systems can suppress the microorganisms before they disperse and invade tissues. . . .
. . . .
-- Be sure to see the rest of this interview - at link above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I'll definitely read up on everything as I wait for the Dr..
Yes, my head is reeling as I wait.
It's brought me down quite a bit.
Just to clarify without exposing any names or hopefully info that I shouldn't .....,
All three Doctors/Lyme Specialists I talked to concerning my CD57 test were conference speakers at the ILADS conference.
One of the persons I spoke with was from the Lab I had the test done, 'Infectolab' in Ausburg, Germany (ILAD members).
I've taken a few things into consideration.
One, I wasn't feeling too great at the conference so I might have missed or misunderstood something.
Also, I was only able to talk to two of the Doctors either in between their Lecture (other people were waiting with questions also), or as they were leaving somewhere.
As you mentioned, I also think maybe they didn't want to make any 'diagnosis' there based only on lab tests and little information and since they weren't my Dr..
The gentleman from the Infectolab did say at one point, "I don't know what your symptoms are".
So, obviously he didn't want to go further on such little info.
I don't think I had told him that my Westernblot was positive.
Can't remember actually.
It might be that the one Dr. only meant to stress that the Mycoplasm was a big problem and might need to be addressed first.
He said something like, "if you hit mycoplsm. then you also might be able hit the other stuff".
That is not a direct quote but something along those lines.
By the way, he recommended me to my Dr. here in Austria..not knowing that was already my Dr..
I checked my Dr.'s website and it says he follows IDADS guidelines for diagnosis and treatment of Lyme.
He seems to be very connected with the Borrelien Center in Ausburg, Germany.
After my first appointment with my Dr. he stressed in clear terms that he was against the guidelines of the IDSA.
He told me that quite clearly after I'd explained years of going from doctor to doctor.
So, yes the ILADS conference was a bit confusing for me (yet good as well) but I think it was a mistake to only stay one day.
If I had stayed both days maybe I'd get more clarity on things and had less stress.
Time was real tight.
I'll keep you posted.
Thnx for everything!!!!
Posts: 128 | From California | Registered: Apr 2012
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