Lyme and cd57 test?

[alsn13]

Hi,
I have questions about lyme and cd57 tests before trying AP so I am posting this to get some help from you guys.
I am a 29 years old female living in Vancouver, Canada and am suffering from en coup de sabre/localized morphea for 19 years.
So on Tuesday, I went to my family doctor and asked I would like to be tested for LYME. As Maz said to me via email I wanted to get elisa or west blot standard test done (which will be covered by national health system) to save money before I go to get an expensive lyme test. But he said no because lyme tests should be done only when there are visible symptoms that doc can see (Red bull eye on skin, etc) I am very frustrated..
So I found that one of the lyme docs in vancouver is doing lyme test with fees.
One is lyme western blots and it says Igenex charges directly to patients. Is this different from Western blot standard? I guess this one is more effective? And the other one I also found is LYME Eli spot. This one is more expensive than western blot one. Does anyone know about these test? Which test did you get for LYME?
In a while I also found about cd57 test. One of the people on scleroderma inspire website said I should get this done first before I get an expensive lyme test. What do you guys think about this?

[Maz]

Hi Alsn,

But he said no because lyme tests should be done only when there are visible symptoms that doc can see (Red bull eye on skin, etc) I am very frustrated

This is very unfortunate. The reason for this is because (a) many people (by some estimates, 50% or more) never see a classic bulls-eye rash or the offending tick, which in nymphal form can be size of a speck of dirt and may be buried in the scalp or some other unseen body part, and (b), there is enough emerging literature to suggest that various forms of scleroderma have been triggered by Lyme disease (and other infections) and so it just makes sense to get tested. In fact, even the rheumatologist, Dr. Alan Steere, who is often credited for discovering Lyme in the town of Lyme, Connecticut, in the mid-1970s, and who is still today considered to be a top expert in the field of rheumatic manifestations of Lyme, made the following statements:

Clinical pathologic correlations of Lyme disease by stage.

Vascular thickening also seems to be prominent, and in the dermis is accompanied by scleroderma-like collagen expansion.

The onion skin thickened vessels of the synovia resemble the vessels of lupus spleens, while the scleradermoid thickening of the dermis and various skin lesions of stage III Lyme disease suggest a collagen-vascular disorder. Finally, the perivascular lymphoid infiltrate in clinical myositis does not differ from that seen in polymyositis or dermatomyositis. All of these histologic derangements suggest immunologic damage in response to persistence of the spirochete, however few in number.

If your doctor is unwilling to run the two-tiered testing (ELISA and western blot) to look for Lyme disease, then I’m doubtful he would be willing to run the CD25 test, which looks for immune suppression due to Lyme. The CD25 test is also a time-sensitive test and needs to be looked at in the lab with hours of the draw. Only a few labs run this specialized test in the US, so unsure if it’s available in Canada, but perhaps a Canadian who has had it run up there can share their experience with you.

It’s not just a problem for you, Alsn. I had two classic bulls-eye rashes and yet when my GP ran the tests, the results came back equivocal so he asserted I didn’t have Lyme. This, too, was misinformation, because it is now well-known that a classic bulls-eye doesn’t even require testing, as it is definitive for Lyme disease. Within 2 weeks of the rashes, the general malaise and migrating myalgias and arthralgias began, with a multitude of other symptoms. Within 2 months, I was laid up in bed with my arms and legs propped up on pillows and a diagnosis of swift onset, severe RA. Suffice to say, I fired that doc and went directly to a world-renowned Lyme Literate MD who made a clinical diagnosis based upon my history (past tick bites, living in an endemic area, rashes, etc.) and a very thorough lab work-up, which found highly elevated white blood cell count and liver enzymes. Within 3 months, the infection had become disseminated. Having had two bulls-eye rashes, the LLMD didn’t need any further evidence, explained how Lyme is a tricky, pleomorphic (shape-shifting) bug that subverts immunity and cleverly cloaks itself within the tissues by changing up its outer surface proteins (hence why some with chronic infection may not test positive on any test), is the second great imitator (the first being syphilis, also a spirochete) that can initiate all kinds of autoimmune aberrations. He also showed me two maps, one of the incidence of Lyme and the other of the deaths in the US due to multiple sclerosis and overlaid one map over the other. The two maps were virtually indistinguishable from the other. When I asked him what I had – rheumatoid arthritis (because I was highly seropositive) or Lyme disease, he said I had both, but once the infections were addressed and the pathogen load was slowly reduced, my symptoms would regress. I won’t say it was an easy path – it wasn’t – but he was right. My highly elevated RA labs started to come down over the following year (after initial worsening due to herxing), as well as my liver enzymes and white blood count both normalized within a month of treatment.

Of course, no one here can tell you if you have Lyme disease or not, just share information and resources (see Scleroderma Research section where Lyme-associated “en coup de sabre” is described):

https://www.roadback.org/research-diagnosis/scleroderma/

So I found that one of the lyme docs in vancouver is doing lyme test with fees.
One is lyme western blots and it says Igenex charges directly to patients. Is this different from Western blot standard?

Lyme Literate MDs consider IGeneX lab testing for Lyme disease to be more sensitive, because it includes extra antibody bands that are specific to certain proteins found on the borrelia outer surface. These antibody bands were removed from the standard western blot when a vaccine for Lyme was being created, because they were trying to avoid the chance of cross-reactivity on the test with those who had received the vaccine. However, that particular protein was so highly specific that the vaccine formulators considered it to be a critical antigenic protein in the making of their vaccine (but shows up late in the disease on testing)! This outer surface protein (dubbed OSP A on antibody band 31 of the western blot) was never returned to the test when the Lyme vaccine was withdrawn from the market, which means that those who develop late stage Lyme may never test positive. The IgeneX test, however, does include this antibody band as well as some other specific antibody bands. You can read all about this in the book, “Cure Unknown,” by Pamela Weintraub (see book list, here: https://www.roadback.org/resources/other-useful-books/).

And the other one I also found is LYME Eli spot. This one is more expensive than western blot one. Does anyone know about these test? Which test did you get for LYME?

My LLMD only ran the western blot, which came back positive on IgG for me and included the antibody band 31 that was missing from the standard test, mentioned above. The Lyme doc did not need the test to diagnose me, however, because I already had two documented bulls-eye rashes and he left the decision up to me. Lyme docs receive special training that enables them to make an extensive, comprehensive clinical workup to enable them to take in the full picture of the patient to make a diagnosis. They recognize that in many patients, especially those with compromised immunity, that they may have a very hard time showing up positive on any indirect testing method, which looks for the patient’s immune response to the bug and that, in cases where the patient is very ill and all indicators point to Lyme, it is safer to treat prophylactically than to let such a destructive infection run amuck.

Some people want to see a positive Lyme test before spending the money to see a LLMD, but others feel fairly certain that Lyme is what they are dealing with, have had no help from their regular doc, so seek out an experience LLMD to help them. It’s very much a personal choice, recognizing that testing, whether standard or specialized, may not pick up all cases of Lyme. In fact, some strains of borrelia, like Borrelia miyamotoi will not even show up on any antibody test, but may show up on PCR direct testing, if it is in the small blood sample submitted to the lab. Lyme tends to drill out of the blood stream quickly, however, and deep into the tissues (this was confirmed by Canadian researchers a few years ago with live visualization of this occurring), so its genetic material might not be picked up in a small blood sample.

There is controversy over the value of CD25 test, even by its originators, because diurnal testing (testing at intervals) can vary quite a bit during the course of just one day. However, if Lyme has been clinically diagnosed, it can help in determining how well a patient is doing on treatment, because it’s really not worth re-testing to look for antibodies, because Lyme is a waxing and waning illness and may appear positive in one test and negative in the next, but then positive again later. So, looking at immune system strength may be a more helpful marker in regards to determining how well the immune system is “keeping the animals in the zoo.”

Were you able to contact anyone via PM with en coup de sabre or need any help with making a connection?

[alsn13]

Thank you Maz,

Since my family doctor does not know what to do with my conditions, I believe I should go meet Lyme doc by myself and get that test done..
In a while my family doctor gave me 2 mg of methotrexate prescription until I see my dermatologist.. I can see my dermatologist on September. Such a long wait and I am very frustrated.. should I take methotrexate while I am waiting?
Will the lyme test results be different if I take methotrexate?
What should I do? I believe the symptoms are progressing.

Were you able to contact anyone via PM with en coup de sabre or need any help with making a connection?

I couldn’t talk with anyone with ecds who have tried AP yet.. I have sent emails and messages to some at roadback and inspire website but no one replied..
Anyone please let me know if you are in my case (ecds on scalp, forehead and face).

[Maz]

Hi Alsn,

alsn13 wrote:

Since my family doctor does not know what to do with my conditions, I believe I should go meet Lyme doc by myself and get that test done.

It can be difficult to decide what to do in the early days, especially when having to make the decision to see a doc who may not be covered by insurance. If you want to get a full Lyme workup, though, it’s probably the only way to do it, if your doc isn’t wanting to help and you must wait till December to see the dermatologist. If you can, Alsn, try to watch the movie documentary on Hulu.com, called Under Our Skin. It will help to explain why people are finding it so difficult to find help, in both Canada and the US.

In a while my family doctor gave me 2 mg of methotrexate prescription until I see my dermatologist.. I can see my dermatologist on September. Such a long wait and I am very frustrated.. should I take methotrexate while I am waiting?

That’s really only something you can decide after getting fully informed with the material on this website, the Henry Scammell books and talking with others about their treatment paths and what has helped them. The following case studies might be helpful to you, too, bearing in mind that individual responses to antibiotic therapy will vary:

https://www.roadback.org/research/localized-scleroderma-unius-lateri-borrelia-burgdoferi-infection/

https://www.roadback.org/research/parry-romberg-syndrome-possible-association-borreliosis/

Will the lyme test results be different if I take methotrexate?

Indirect testing, looking for your immune response (antibodies) to an infection, would likely be modified by drugs that suppress immune response (if the immune system’s response to infection is supppressed, it won’t see bugs and may not produce enough antibody to test in, say, a western blot test). So, if you want testing run, then it would be ideal to wait to start immune-suppressive therapy till after infection testing is run.

What should I do? I believe the symptoms are progressing

Some people will do both treatments together if fear of progression is an issue. Some people prefer the conventional route, taking only immune-suppressants, and some prefer not to take these and just want to use antibiotic therapy. Minocycline has many other DMARD properties in addition to its antimicrobial effects, so you’d still get benefit from being on minocycline, even if also on methotrexate. Then, later, immune-suppressants can be tapered off slowly, if desired.

I couldn’t talk with anyone with ecds who have tried AP yet.. I have sent emails and messages to some at roadback and inspire website but no one replied. Anyone please let me know if you are in my case (ecds on scalp, forehead and face).

There are a couple of moms here who might be open to connecting and sharing the experience of their kids with en coup de Sabre: kseevers and lneal. If you have trouble connecting with these ladies in a private message on the forum, I’ll see if I can reach out for you.

[alsn13]

Thanks so much Maz.
I sent a message to both moms and was able to talk with one of them. I will look for more information and if I have any questions, will let you guys know again 🙂

[Maz]

Thanks for letting me know you got through to one of the Moms, Alsn!!! I hope they were able to provide reassurance to you. They are both wonderful ladies and I’ve had the pleasure of speaking by phone with both of them. En Coup de Sabre is a rare bird around here, but the people who have proceeded with abx therapy seem to have done quite well, over time, bearing in mind that it is a slow therapy. It’s also interesting to see who went solely with abx and who went with a combo approach of both methotrexate or another DMARD and abx. I hope you find your right path to find wellness again!

[Author]

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