My second sample came back negative?

[worldofme]

My second sample submit to lab came back negative for bacteria but positive for wbc cd45 antigen he1.

I’m confuse I didn’t take any meds that would clear corneybacterium.

However, I was on humira. Could humira supress the bug?

[PhilC]

The second sample is probably a false negative. The test needs a minimum of 20,000 bacterial cells per ml. The bacteria may have been present in the sample, but below the minimum threshold. That’s just one possibility to explain why the test result was negative, but not the only explanation.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[worldofme]

Phil,

How could this be possible? 2nd sample had more speed count volume too

[Calida]

Hi B,

Everything you reported makes sense.

First, corynebacterium tuberculostearicum is an intracellular parasite. This type of infection needs to be hit with a multi-drug therapy. Previous less-than-adequate attempts to eradicate the infection drove it into hiding so you’re not going to get much of a sample from semen at this point no matter how fast you spin the sample. The parasites are holed up in the epithelial cells, not floating around in fluids.

Second, the CD-45 antigen he-1 makes sense. The CD-45 stimulates the production of leukocytes and the he-1 is the IgE antibody which is supposed to protect against parasite invasion. The he-1 is a major secretory protein of the epididymis which is the long, coiled tube that connects the vas deferens to the testicals. So now you know the exact location of the infection and that the infection is located within the epithelial cells lining the epididymis.

Now, what to do with this information? There are a couple of clues:

1- Both you and Jrod have axial spondyloarthropathy but his is from chlamydia t. which is a gram negative rod (bacilli). Your corynebacterium is a gram positive bacilli but both are intracellular pathogens infecting the reproductive tract. That is the common factor that triggered the A.S. Getting rid of the infection will help resolve the A.S.

2- At this point, all attempts to test the susceptibility of C.T. to antibiotic treatments have failed so you have to find a relative of this parasite and evaluate the treatment used against the relative. Corynebacterium tuberculostearicum *MAY* be a new form of mycobacterium laprae/mycobacterium lepromatosis (leprosy) which is also a rod-shaped (bacilli) gram positive intracellular parasite which also favors epithelial cells.

Below is the argument for the relationship between C. Tuberculostearicum and leprosy from the highly esteemed Pasteur Institute

“Description of Corynebacterium tuberculostearicum sp. nov., a leprosy-derived corynebacterium http://www.sciencedirect.com/science/article/pii/S0769260984800939

Leprosy-derived corynebacteria (LDC) have been extensively studied over the past decade. A composite of their biological properties (cell morphology, staining reactions, cellular inclusions and guanine-plus-cytosine content of their deoxyribonucleic acid; 16 strains studied) and their chemical structures (peptidoglycan type, major cell wall polysaccharide, major glycolipid as well as characteristic mycolic acids) appears to define them as members of the genus Corynebacterium. In relation to other corynebacteria found in humans, including «JK corynebacteriaå, they seem to be distinct. They are here named Corynebacterium tuberculostearicum sp. nov. because they produce a 10-methyloctadecanoic (tuberculostearic) acid (8 strains studied). This and some of their other attributes are considered in relation to properties of leprosy bacilli and Mycobacterium leprae.”

B., if I were in your shoes, I would share this information with your Infectious Disease doc and let him evaluate the two diseases. If he feels they are closely related or even that C.T. is a new form of leprosy then the treatment is easily found.

From the World Health Organization: http://apps.who.int/medicinedocs/en/d/Jh2988e/5.html

“Several drugs are used in combination in multidrug therapy (MDT). (See table) These drugs must never be used alone as monotherapy for leprosy.

Dapsone, which is bacteriostatic or weakly bactericidal against M. leprae, was the mainstay treatment for leprosy for many years until widespread resistant strains appeared. Combination therapy has become essential to slow or prevent the development of resistance. Rifampicin and clofazimine are now combined with dapsone to treat multibacillary leprosy.”

This is a 12 month regimen.

Hope this helps.

Kelly

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[worldofme]

Thank you for posting valuable information. I’m lost,did you say the bacteria is NOT in the prostate but in the epididymis

So What i have is a PARAsite, would this be why FLAGYl helps so much?

And why do i need to take Abx for 12 months. Why that long?’

Rifampicin and clofazimine are now combined with dapsone to treat multibacillary leprosy.” is that the drug I should discuss with ID?

[worldofme]

Why not take zyvox and Rifampin together? Would this not work for my strain of bacteria? There is no way i am taking :clofazimine : This thing is dangerous.

[worldofme]

Also, am i able to pass this bug on to other folks?

[Calida]

Hi B,

A lab result is just a snapshot of a moment in the day of disease activity. He-1 identifies the location of the antigens found in your last test.

Molecular cloning and characterization of HE1, a major secretory protein of the human epididymis.
https://www.ncbi.nlm.nih.gov/pubmed/8924505

I don’t know what this means in terms of infection location, whether the prostate is itself infected, only that there was a reaction to an infection in the epididymis.

Here’s more information as to how researchers identified Corynebacterium tuberculostearicum as an isolate in human leprosy. C.t., along with Mycobacterium leprae, may together have a cooperative role in the development of leprosy as they are two distinct bacteria with some DNA and cell membrane material in common.

http://link.springer.com/article/10.1007/BF00190309
DNA methylation in leprosy-associated bacteria: Mycobacterium leprae and Corynebacterium tuberculostearicum

From Medical Microbiology and Immunology
“Corynebacterium tuberculostearicum is an isolate from human leprosy lesions (originally named Leprosy Derived Corynebacterium LDC, which have been deposited at the American Type Culture Collection)

http://documentslide.com/download/link/dna-methylation-in-leprosy-associated-bacteria-mycobacterium-leprae

The World Health Organization triple antibiotic protocol for the latest form of leprosy is just a starting point for you and your ID doc to begin a discussion. He can use his knowledge and experience to decide which antibiotics should be used in your therapy which should be a triple AP long term.

This is a difficult rare bug but it’s source is known and it has been treated successfully. Usually the reason certain infections are rare is because transmission is difficult. If it was a highly contagious disease, it would not be rare unless it’s a newly emerging form of an old disease. Your ID doc would know more about this.

Corynebacterium tuberculostearicum is a bacterium, as is it’s cousin Mycobacterium leprae but leprosy, in general, is known as a parasitic infection as these bacteria live off the host with no benefit to the host.

Genes for the major protein antigens of the leprosy parasite Mycobacterium leprae.
https://www.ncbi.nlm.nih.gov/pubmed/3894979

You’re going to need a combo antibiotic long term, I wouldn’t be surprised if it was a year or more, and you need to stick with the protocol until all signs of infection and the resulting arthritis have resolved. It’s similar to our AP therapy in that the goal is to maintain remission for life and that means using an Antibiotic Protocol for life or until true cure for our various diseases are found. You have to be committed and stay with the protocol or your disease may resurface as a stronger highly-drug resistant strain.

Please share these studies and information with your ID doc so that you can get started on the proper multi antibiotic protocol asap. Jumping from antibiotic to antibiotic along with starting and stopping each has only made this bacterium more skilled at hiding in your body. A triple protocol will hit it hard in all its forms, whether intracellular or out and about looking for more cells to hijack, and will ensure that resistance to one antibiotic will be covered by a triple offensive. Dapsone is used in triple abx treatments and Rifampin has been mentioned as one potential useful abx in leprosy so let the ID doc figure out the best combo.

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[worldofme]

How could I have leprosy? I don’t have any symptoms of it?

I only had Manuel stimulation, how could I get this rare difficult bug?

[Calida]

Corynebacterium tuberculostearicum is what’s called a Leprosy-Derived Corynebacterium. It is one of two or three bacteria that researchers believe contribute to the onset and development of leprosy through a cooperative effort. Without M.leprae, C. tuberculostearicum will not develop into the common form of leprosy.

I don’t know how you got it but you have it. Logic says it should be susceptible to the same or similar antibiotic treatment used successfully in leprosy. I hope your ID doc reviews the articles and finds a great abx combination that works for you.

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[richie]

Hi While I find the above over my head =-I tend to throw out all the scientific stuff and leave it to doctors capable of treating it —You discuss options with your doctor and look for suggestions here then go back to your doctor –this is the most incredible approach I have every heard of —A little less commiseration and more constructive approach might help you a hell of a lot more !!!! Take your records -contact a capable knowledgeable doctor at the U of Penn medical facility and try and get help that can help you –unless you enjoy talking about your illness and really getting no place and make no mistake you are no wheres my friend –you illness is way way beyond this local doctor

[PhilC]

He already knows which antibiotics are likely to work thanks to this research paper:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3421492/

I think his current ID doc is OK, but if he could find a local doctor willing to administer IV daptomycin or vancomycin it would probably be a big help.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maz]

Calida wrote:

Corynebacterium tuberculostearicum is what’s called a Leprosy-Derived Corynebacterium. It is one of two or three bacteria that researchers believe contribute to the onset and development of leprosy through a cooperative effort. Without M.leprae, C. tuberculostearicum will not develop into the common form of leprosy.

I don’t know how you got it but you have it. Logic says it should be susceptible to the same or similar antibiotic treatment used successfully in leprosy. I hope your ID doc reviews the articles and finds a great abx combination that works for you.

Surprisingly, a child was recently diagnosed with leprosy out in CA. Leprosy is believed to be contracted via prolonged contact with an infected person, but most are innately immune. It’s quite a rare disease in the US…about 150 cases per year, but usually in folks who have traveled to areas where the disease is more common.

https://www.statnews.com/2016/09/23/leprosy-california-student/

[worldofme]

what about the abx listed here?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3421492/table/T3/

[worldofme]

Could Lab have made a mistake with my first sample such as Cross Contamination which is frequently noted? Would it be wise to ReSend 3rd sample to determine what is found?

[Author]

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