My second sample came back negative?

[richie]

Hey world —-Couldnt get link to your message –my email rstone@optonline.net –richie

[Calida]

B., human error is always possible in labs but I doubt they had c. Tuberculostearicum lying around the lab as it’s rare and difficult to culture so cross contamination is not likely. Your diagnosis makes sense, especially in light of the difficulty treating it.

I agree with Richie in that you have an extraordinary research facility nearby in the University of Pennsylvania. Research hospitals are the best places for people with rare diseases as knowledge is current. I did find a doctor affiliated with UPenn, Daniel Ebenezer, who specializes in ocular leprosy. He’s not for you but may be of help finding an ID doctor there who understands c. tuberculostearicum’s role in leprosy and how to treate it as an isolate.

Hospital of the University of Pennsylvania
3400 Spruce Street, Philadelphia
215-662-4000

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 very much. In such case would it be wise to start Rifampin without seeking one of the ID doc at UPenn?

I just don’t want to take Rifampin and later on not work for if need it.

My current Id suggested trying Rifampin + Doxy. Then zyvox, but the problem is I doubt doxy is really effective for my prostate symptoms.

13 of 16 strains were sensitive to TetraCycline…Isn’t Doxy a Tetracycline?

[Calida]

Yes, doxy is a tetracycline.

If your ID doctor decides the best treatment is doxy and rifampin, express your concerns and hopefully he will allay your fears. You can contact UPenn to find a specialist familiar with c.tuberculostearicum and/or leprosy who may confirm or dismiss the connection between your infection and the bacteria found in leprosy.

A second opinion is never a bad thing if you have doubts and UPenn is a great place to go for a second opinion. I’m not a doctor or pharmacist so I can only share research and explain the reasoning behind double or triple antibiotic therapy. Only a physician can answer your questions as to what’s best for you. I hope and believe someone at UPenn can help you because, as Richie said, you need to be seen by someone familiar with the research and treatment of C.tuberculstearicum. As research shows, they exist and UPenn is a great start.

Best always,
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

[richie]

Hi AT the U of Penn medical -heres the contact –Division Chief U of Penn Infectious Disease Division –Dr Ebbing Lautenbach Division Chief —ebbing@mail.med.upenn.edu —this is the move for you –unless you just prefer trying to get info about drug combos here –this tells me you arent really committed to getting well –if you are committed you will contact these folks today !!!!!

[PhilC]

worldofme wrote:

My current Id suggested trying Rifampin + Doxy.

I see a potential problem with that combo. You said that doxycycline seems to be doing little or nothing for you. That’s not good. You want to be taking two antibiotics that work, not one that works plus one that barely works (if that). The reason is that rifampin should not be used by itself since bacteria can easily develop resistance to it. Unfortunately, in your case, it is likely that rifampin + doxycycline = rifampin (i.e., 1 + 0 = 1). And on top of that there’s the additional problem of a known drug interaction between doxycycline and rifampin — rifampin may weaken the effect of doxycycline by increasing the hepatic metabolism of doxycycline.

It would be very helpful to find a doctor who works with a good lab. The U of Penn may be a place to find such a doctor. Since you know what bacterial species you are dealing with, you want to work with a lab that’s willing to try to culture those bacteria using a growth medium that is known to work for that species, and not some general-purpose growth medium that may not work. If they succeed, they then can perform antibiotic sensitivity testing.

Phil

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

[worldofme]

Hi, thanks richie…I will write to them today, let u know how it goes.

[worldofme]

Well Dr. Ebbing didn’t respond. I went down the list and email All of the ID at Penn along with sending my results to them electronically so they can review and see if they want to take on the case.

I hope someone does….else I got no option?

[lynnie_sydney]

I wouldn’t expect an immediate response from anyone – especially a Division Chief, they must be crazy busy. I’d also consider a telephone call to follow up in a couple of weeks and/or perhaps consider getting your most trusted doc to also send an email/make a call on your behalf

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)

[Maz]

Ditto, Lynnie. Doctors and specialists do not make a practice of interacting with unknowns online. If you can get your GP to refer you to this doctor and send your medical history and details of current situation, this doc might correspond with the GP, but not likely directly with a patient. Reasons are many, but a couple may be liability issues and consulting fees.

[worldofme]

Just spoke to someone at penn, told me to send the report and someone will call me after they speak with the doc. Let’s see how it goes.

[richie]

Hi Thats progress

[worldofme]

Spoke to someone and they assign me to random doc. Not sure if I’ll go any where with this.

[richie]

I am sure its doctor on staff in the infectious disease division –who did you expect -the division chief ?????? –to be at Penn a doctor has to be first rate –this may well be your golden opportunity to help yourself –If you dont follow up on this –then I think the situation is hopeless !!!!!!!!!!!!!!!!!!!

[worldofme]

The doctor is fresh graduate, just read up on his profile. Current ID has over 40 years of exp and he is also affiliated at penn.

I will def go through the appt to get ID opinion.

[Author]

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