Mycoplasma Testing

[Joe Boom]

Hello my fellow veterans,

I am trying to conduct a survey as to how many Gulf War veterans have tested positive for Mycoplasmas. The survey at this time will be limited to the first Gulf War veterans (pre 9/11 vets) that tested positive or may not even no that they may have the Mycoplasmas in their system. I have not figured out how to conduct the survey yet but I will be open to any suggestions and responses to see how this all pans out.

Back in the mid 1990's the VA conducted Study #475 at Hines Hospital in Illinois. I was one of upwards of 1000 veterans that tested positive for one or more of the Mycoplasma species. I tested positive for three Mycoplasma species. After that I was allowed to participate in the double blind study by either taking a placebo or a Doxycycline medication that was supposed to eradicate the mycoplasmas. However a report was generated from the Annals of Internal Medicine stated later in its findings that the doxycycline medication did nothing to eradicate the mycoplasmas. (See Link for the full 15 page report http://annals.org/article.aspx?articleid=717633). So I went to my VA in 2008 and asked them if they would retest me to see if they were still in my system. The VA doctor initially refused me and wrote in his notes that I walked out of the consult. I did walk out after he refused to provide the service I requested. There was no point arguing with him, he made up his mind that I did not need to be tested. I am currently trying to get retested by the VA after working with patient advocacy at the VA hospital that I belong. As of this writing the VA has made me do all the leg work. Telling me that I need to order the test results from the original hospital that ran the survey and that I need to find out what lab they used ETC. However can't the doctor order those tests and find out what labs conduct the required tests? Either way I am no closer to getting tested again then I was back in 2008. And here is the kicker. I have a claim pending in Appeal in Remand at the Chicago Regional Office waiting since 2011 since it was kicked back from the BVA because the VARO sent my C file to the BVA incomplete Surprise, surprise.This is a whole other story. More to come.

Joe Boom

[Berta]

I found only 2 2011 BVA remands, with AOJ-Chicago RO, and mycoplasma in them:

http://www.va.gov/vetapp11/Files4/1135841.txt

and

http://www.va.gov/vetapp11/Files4/1139044.txt

Is either of these your BVA remand?

They both involve multiple issues....14 issues in

http://www.va.gov/vetapp11/Files4/1135841.txt

Part of this remand states:
"6. Schedule a VA examination of the Veteran to determine the nature and etiology of any chronic residuals of a mycoplasma infection. The examiner should review the claims folder prior to the examination and should indicate on the examination report that he or she has reviewed the claims folder. A copy of this remand should also be provided to the examiner. "

But not sure if that is your remand.

This case has some info that could be important:

In Part:

"Service connection for residuals of mycoplasma infection was
established in July 2001; a noncompensable rating was
assigned under Diagnostic Code (DC) 6899-6826, effective from
December 1999.

Mycoplasma infection is not listed on the Rating Schedule,
and the RO assigned DC 6899-6826 pursuant to 38 C.F.R.
§ 4.27, which provides that unlisted disabilities requiring
rating by analogy will be coded as the first two numbers of
the most closely related body part and "99." See 38 C.F.R.
§ 4.20 (2005). The RO determined that the most closely
analogous diagnostic code is DC 6826, for desquamative
interstitial pneumonitis.

DC 6826 is evaluated under a general rating formula for
interstitial lung disease, which provides that a 10 percent
evaluation is warranted where forced vital capacity (FVC) is
75 to 80 percent of predicted value, or diffusion capacity of
the lung for carbon monoxide by the single breath method
(DLCO (SB)) is 66 to 80 percent of predicted value. A 30
percent evaluation is warranted where FVC is 65 to 74 percent
predicted or DLCO (SB) is 56to 65 percent predicted. A 60
percent evaluation is warranted where FVC is 50 to 64 percent
predicted, or DLCO (SB) is 40 to 55 percent predicted, or
maximum exercise capacity is 15 to 20 ml/kg/min oxygen
consumption with cardiorespiratory limitation. A 100 percent
evaluation is warranted where FVC is less than 50 percent
predicted, or DLCO (SB) is less than 40 percent predicted, or
maximum exercise capacity is less than 15 ml/kg/min oxygen
consumption with cardiorespiratory limitation, cor pulmonale,
or pulmonary hypertension, or requires outpatient oxygen
treatment. ?

http://www.va.gov/vetapp06/Files2/0609647.txt

Is this the same diagnostic code the VA is using in your case?

You said

"Telling me that I need to order the test results from the original hospital that ran the survey and that I need to find out what lab they used ETC. However can't the doctor order those tests and find out what labs conduct the required tests?"

Has the VA made any attempt to get those test results? Under Dity to Assist, if they were aware of these records they should have attempted to get them.

I wouldn't depend on VA , however,

so have you attempted to get those records from the original hospital yourself?


"If you have any question, please contact me at

Hines VA Hospital, Hines, IL
708-202-8387, ext 24509.

Thank you, Jean Snead,
RN Study Coordinator,
e-mail jmmris@hotmail.com "

Source 1999 http://www.rt1automile.com/web/mall/pgev/Study475.htm (she might still be using that email addy)

She is also at Linked In https://www.linkedin.com/pub/jean-snead/8/367/48b
and possibly on Facebook


or you could make a Privacy Act request 5, USC,552, through their Records Access Officer at

Edward Hines, Jr. VA Hospital

5000 South 5th Avenue
Hines, IL 60141
708-202-8387

[Berta]

Also at the BVA web site I got countless hits

Page 1 of 29360 results — searched 831029

Query (study 475)

You might want to search the BVA web site.
http://www.index.va.gov/search/va/bva.jsp

to see if any of those claims would help you with the survey but a separate FOIA request to Hines specifically regarding Study 475 might reveal what you seek.
I am not quite sure what info you want.

If you google mycoplasma hadit.com, some past discussions here will pop up.

[Timshortt]

Hello my fellow veterans,

I am trying to conduct a survey as to how many Gulf War veterans have tested positive for Mycoplasmas. The survey at this time will be limited to the first Gulf War veterans (pre 9/11 vets) that tested positive or may not even no that they may have the Mycoplasmas in their system. I have not figured out how to conduct the survey yet but I will be open to any suggestions and responses to see how this all pans out.

Back in the mid 1990's the VA conducted Study #475 at Hines Hospital in Illinois. I was one of upwards of 1000 veterans that tested positive for one or more of the Mycoplasma species. I tested positive for three Mycoplasma species. After that I was allowed to participate in the double blind study by either taking a placebo or a Doxycycline medication that was supposed to eradicate the mycoplasmas. However a report was generated from the Annals of Internal Medicine stated later in its findings that the doxycycline medication did nothing to eradicate the mycoplasmas. (See Link for the full 15 page report http://annals.org/article.aspx?articleid=717633). So I went to my VA in 2008 and asked them if they would retest me to see if they were still in my system. The VA doctor initially refused me and wrote in his notes that I walked out of the consult. I did walk out after he refused to provide the service I requested. There was no point arguing with him, he made up his mind that I did not need to be tested. I am currently trying to get retested by the VA after working with patient advocacy at the VA hospital that I belong. As of this writing the VA has made me do all the leg work. Telling me that I need to order the test results from the original hospital that ran the survey and that I need to find out what lab they used ETC. However can't the doctor order those tests and find out what labs conduct the required tests? Either way I am no closer to getting tested again then I was back in 2008. And here is the kicker. I have a claim pending in Appeal in Remand at the Chicago Regional Office waiting since 2011 since it was kicked back from the BVA because the VARO sent my C file to the BVA incomplete Surprise, surprise.This is a whole other story. More to come.

Joe Boom

. Joe, there are companies who will test for mycoplasmas for about $120.00. Iam having myself and wife tested soon. Let me know if you would like more info on independent testing facilities.

[fortitudine]

Unfortunately I don't have an answer for your question about obtaining the test results or getting another test. I would go with testing from private physician if your VA doc is uncooperative.

I have a question to add, though. Does anyone know if mycoplasma would be discovered in other blood tests? I have had a ton of blood work done recently, so I'm not sure whether to ask for another test. I've heard that mycoplasma can cause CFS.

[Timshortt]

Unfortunately I don't have an answer for your question about obtaining the test results or getting another test. I would go with testing from private physician if your VA doc is uncooperative.

I have a question to add, though. Does anyone know if mycoplasma would be discovered in other blood tests? I have had a ton of blood work done recently, so I'm not sure whether to ask for another test. I've heard that mycoplasma can cause CFS.

[Timshortt]

A POLYMERASE CHAIN REACTION ( PCR) BLOOD TEST for Mycoplasma is needed.