mycoplasma testing

[Marianne Welch]

I am new to researching mycoplasma.  It seems to fit my symptoms and I want to be tested.     I live in Utah.   Can anyone recommend a GOOD dr. in this state that does the test?     Are there any labs on the west coast that will do the test WITHOUT a drs. request?   

Also, how do you know if the lab is experienced and will do the test dependably. 

Which test should one go for… PCR or ELISA?  This is confusing to me.  Why would anyone even do a PCR if it only finds the mycoplasma in the blood and not in any other tissue fluid? 

What are the chances of convincing conventional doctors in one's area to do the test?  Should I bypass this step and just find a dr. on the AP list of drs to chose from that the roadback sent me?   There is little selection for my state and no indication of experience level on the drs who use the AP protocol for mycop. in my area.

Thanks,    Marianne

[lynnie_sydney]

Marianne – if you go to http://www.rheumatic.org, there are 3 labs which they list that do  mycoplasma testing. You can send away for this test.  A link to the section where this list appears is below: Lynnie

http://www.rheumatic.org/docs.htm

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Hi Marianne and welcome to the board.

I will send you a list of the few AP docs we have listed for Utah in a Private Message.

Take care…..kim

[Marianne Welch]

Thank you.  this offers great info!

I called the lab in Seattle…US Biotek that was on the list.  They never heard of the Mycoplasma ELISA test.  I don't know why they are on the list.  They said they just do allergy tests.

The best lab does look like the one in Maryland, but it is so far away.  I was hoping to find one closer so there is less change of the samples going bad before it arrives in the lab.

I am struggling with deciding which test to have.   The PCR or the ELISA.  I am thinking the ELISA is better but I don't know.   Has anyone been tested for this bacterium and got a negative and then tested again and got a positive? 

I imagine the test is very important to have results on before embarking on therapy with a conventional dr.

Maybe it is just best to go directly to a dr from you referral list even if it is far away. 

Marianne

[Maz]

[user=1600]Marianne Welch[/user] wrote:

What are the chances of convincing conventional doctors in one's area to do the test?  Should I bypass this step and just find a dr. on the AP list of drs to chose from that the roadback sent me?   There is little selection for my state and no indication of experience level on the drs who use the AP protocol for mycop. in my area.

 

Hi Marianne,

All your other questions were answered, so thought I'd tackle the above.

Chances for convincing a conventional doc in your area to do the test are low as it's just not common practice, but there are open docs (like possibly a DO or integrative physician) and you might be lucky. We have the same problem with the more sensitive Lyme tests…very hard to find a doc who will sign off on them.

Most people don't wait for myco testing and head straight into antibiotic therapy. Reason being that many are in pain and don't want to wait it out. Also, Dr Brown was a lumper, so he treated his patients pretty much the same way….he did use the TARCI labs, but I don't think he excluded anyone from treatment because they tested negative. It's very hard to culture mycoplasma, as explained in the book, The New Arthritis Breakthrough.

Thing is, you don't have to test positive for mycoplasma in order to start AP. A good % of the world's population carries mycoplasma and are symptom-free. This is probably why conventional docs don't feel it necessary to test for it. It's probably a given that both you and I and everyone here have some myco in us. The difference in the rheumatic is how they respond to this group of infections. Brown called it, “bacterial allergy.” Just like some people are allergic to pollens and some aren't. It's not the pathogens, but the toxins (antigens) they release to which some people become sensitized for whatever reason…genetics, toxic burden, leaky gut, etc.

For the docs on the list for Utah, you would just have to figure out their level of experience with the protocol, if you want a doc with some knowledge of infectious causes. Alternatively, you can traval out of state to a more experienced physician, as many here will do.

We currently have three other members listed for your state. You could private message them and ask who they see.

http://rbfbb.org/view_user.php?region=Utah&country=USA

Marianne, I have a funny feeling we may have emailed on the apdoctors email? If so, forgive me if I've repeated myself. 😉 I think you may have mentioned your whole family was affected to some extent and you'd been in touch with Prof Nicholson? I may have you confused with someone else, though…sorry, if so.

Peace, Maz

 

[richie]

Hi MAZ–

“Probably a given that everyone here has mycoplasma “”

---

I might go along if you expanded to make an exception of folks with scleroderma —I “ll just mention  –polyvinyl chloride =cleaning fluid called perc –silica and jet fuel –toluene -benzene etc etc —I would wager the incidence of mycoplasma around here would just mirror the results for the general population –that is also why I agree with you that waiting for a positive myco test is really immaterial and just serves to delay the start of treatment –Rather finding a good diagnostician is far far more important than the results of the myco test –the more conventional rheumatic tests would help tremendously in making the dx —

richie

[m.]

[user=1600]Marianne Welch[/user] wrote:

Which test should one go for… PCR or ELISA?

[Maz]

[user=16]richie[/user] wrote:

“Probably a given that everyone here has mycoplasma “”

---

I might go along if you expanded to make an exception of folks with scleroderma —I “ll just mention  –polyvinyl chloride =cleaning fluid called perc –silica and jet fuel –toluene -benzene etc etc

 

Hi Richie,

I think we've had this discussion a few times before? I have a question for you. How do you think minocycline has reduced your toxic load of polyvinyl chloride, silica and toluene benzene? Were you tested for these toxins and do you know, with absolute certainty that these environmental toxins are the sole cause of your scleroderma?

I actually agree that the mycoplasma levels of patients here probably mirrors the general population. The difference with rheumatics, however, as Dr Brown explained in the book, is that they react very differently to these organisms from the general population. Something causes rheumatics to become sensitized to the antigens these organisms release into the body…he aptly called it, “bacterial allergy.”

I have no doubt that environmental toxic load makes our diseases much worse, as they compromise the immune system and our ability to fight infections. Toxic load may even be the reason that we become sensitized to mycoplasma and other infections that trip up our immune systems. However, there is now emerging evidence that some cases of scleroderma are linked to Lyme disease, an infection connection that can't be ignored. Lyme also comes with a package of other organisms, including various strains mycoplasma. There are number of patients here with both scleroderma and documented cases Lyme disease.

I don't really think it's an either/or situation with scleroderma, Richie…it's just not so cut and dried. I think many factors come into play…environmental toxic burden, genetics, pathogen load, celiac disease, etc. There is no one cookie-cutter fit for all cases of scleroderma. I also think it's more probable that minocycline is working at reducing pathogen load rather than reducing toxic burden. And, althought this is purely surmise on my part, it could well be that as the immune system recovers on AP, the toxic burden is more easily shed over time (providing one isn't re-exposed to the same environmental offenders).

It might interest you to know that there are many Lyme physicians now who are very aware of the bio-toxins that exacerbate infectious load. Not only are they providing antibiotic therapy to fight the infectious load, but also employing supps and adjunctive therapies to reduce the toxic burden.

I'm not disagreeing with you entirely….just saying that I think the picture is vast and very unique to each individual in terms of all the factors (and more) mentioned above.

Hope that helps to explain this reasoning a bit better, Richie?

Peace, maz

[MMW]

Thanks M,

That was very informative.  It sounds like you got the beginnings of arthritis and found the solution just in time before your immune system went totally bonkers.   I think this is my situation.   I have always been healthy until the end of a 3 year stay on a tropical island in the Marshall Islands.  After, I left,   little things started happening healthwise.  My daughter had problems too, although different.   (Hers ended up being fibromyalgia.) I have tried everything to keep my immune system up during the past 3 years since we have returned home.   But over the past year it has been a downward spiral.  

Your message gives me great hope on it not taking too long to return to normal immune system wise if I follow AP. 

I really  wanted to be tested by the TARC and had all information.  But my symptoms over the past week got the best of me.  I started Zithromax today.  I really think your approach is the right way, though.   I wonder if it is too late to get some of the other tests other than the antibiotic sensitive PCR.  I hate to spend all that money out of the pocket and get false readings because of antibiotics in my system.  If that happens then my primary may not be open to giving me AP afterall.   I am working on him and I see hope after my course of ZIthromax that he will give me AP.

Congradulations once again on your negative tests!

Marianne

 

[nspiker]

Marianne,

I had a positive PCR test for mycoplasma, after being on antibiotics for two months.  I know the doctors like to test without antibiotics for at least a month, but I refused to stop the AP.

I used VIPdx.  Professor Nicolson recommends their PCR testing.  They sent me a kit, took it to my doctor, they approved and drew blood, and it was sent off.  Two weeks later we had the results.  You can order a kit @ (775) 351-1890.

nancy

[Kim]

Marianne,

You can call the lab and ask them what the washout period is for the abx you are on to get a clean test, and then make up your mind.

kim

[m.]

Marianne wrote:

I have always been healthy until the end of a 3 year stay on a tropical island in the Marshall Islands.

Hi Marianne, if you can swing it, a broad spectrum search for parasites, and other infections may be in order. A full GI test, like the one from Diagos-Techs will catch some things.

[MMW]

Hi Nancy,

San Diego was my hometown, even though I live in Utah currently.  I was concerned about sending or overnighting bloodwork all the way to Maryland TARC and wanted to find a closer lab that was dependable.   If you think PCR is the only test to go with and it is closer to the west coast, this might be a better choice.

You must have been nerve racked taking the PCR with antibiotics in your system, knowing that if it came back negative you could not continue AP through your dr.

TARC charges $120. for the PCR.  Is that about average for most labs.

Marianne

[MMW]

Dear M,

After we left the island of Kwajelein, we moved to Hawaii for several months.  It was there that I was tested and informed that I had a parasite called BLASTOCYSTIC HOMINIS.  I was treated for this parasite with Metatroniazole(sp ?).  Shortly later all my symtems got even worse. 

But what is so odd, not one dr here on the mainland USA has ever heard of this parasite.  I also found it interesting that there is strain called Mycoplasma “HOMINIS”.   Maybe Bastocysitc Homins and Mycoplasma Hominis  are the same thing.  

Marianne

[nspiker]

Marianne,

VIPdx is located in Reno, NV.  I don't think the location of the lab is important, because the blood work has to be sent out late in the afternoon, and arrive the next day.  Any recognized lab will have these same requirements. 

We decided to run the infection panel which included, 4 mycoplasma tests, chlamydia pne., and toxoplasmosis.  The cost was about $500, however, they did take my insurance, so have not had to pay anything out of pocket. 

The mycoplasma that I tested positive for was mycoplasma hominis.  What are your symptoms?

nancy

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