Sarcoidosis

I searched this site and I'm not sure I got an answer.  Do we have any people (current or former) on the site that suffered from Sarcoidosis?  And if so, what was their experience with doing the Wheldon or Vanderbilt CAPi?  I'm asking because my wife's best friend's daughter has been diagnosed with Sarcoidosis and the immunospressant treatments they are giving her seem to make the condition worse (which it seems to me is to be expected if the cause is an infectuous pathogen rather than autoimmunityi)

I need to know because if the CAP can help, I can't just stand by and watch a 20-something girl die of a treatable condition if I know something that can help. 

Strangely enough, that makes CPni and the Wheldon protocol as little like religion.  After all, if you believe your religious faith gives you the key to avoiding eternal punishment, wouldn't you tell the world?  Similarly, if you believed that you had the treatment for a disease that many doctors had overlooked wouldn't you be crying it from the rooftops?

Comments

I have no personal experience

I have no personal experience of sarcoidosis, but this paper may be useful: http://erj.ersjournals.com/content/19/2/267.long<

The authors found significantly elevated C. pneumoniae specific IgGi and IgA in the broncho-alveolar lavage fluid of sarcoidosis patients.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

Sarcoidosis killed my Mom (actually the drugs they gave her did)

My mother died in 1992 at the University of Michigan Hospital. She had her first stroke around 1985 and went on to have many more over the ensuing years. They started giving her steroids and continued to do so over the years. The reason she had strokes was because she had vasculitisi which was caused by sarcoidosis. Sarcoidosis normally causes inflamation in the lungs but for my Mom, it caused her coratid arteries to suddenly inflame at various times and she would end up having another stroke. She was only 42 in 1992 when she died after probably her 10th extended hospital stay at UM Hospital having access to "the best of the best" doctors, blah blah blah. The U.S. right? Best medical system in the world right? More like the best Emergency care in the world. If you get shot, stabbed, cut, in a car accident, have a heart attack, stroke or some other true emergency there's no country in the world that will SUSTAIN LIFE like the U.S. medical system. I believe that. But even several of my Mom's doctors were honest to enough to say that they really had no idea how to effectively deal with sarcoidosis and much less what causes it. They were also honest enough to say that all the steroids that they themselves were prescribing her were what actually killed her. While, even at 22 yrs old, I appreciated their honesty, when I heard them say that, I immediately became a non-fan of the U.S. medical system. Long before my MS diagnosis and battle started in 2005.

I liked your comparison between CAPi and religion. And I say that as a Christian myself. My wife thinks I'm a little weird, not because of my passion for Christ (which she shares), but my passion for CAP and my belief that it was really CAP that helped me to feel better for several years. (Even after only about 6 months of taking it.) I'm passionate about spiritual health (Jesus), relational health (my wife & kids & friendships), physical health (CAP, green foods, etc), financial health (getting out of debt), and career (Florida real estate, my profession). In that order.

I'm not sure if your wife's BFF's daughter with sarcoidosis could benefit from CAP or not but if her doctor's are just pumping her full of immunosupressants & prednisone... then perhaps it's worth a try. I commend you for even caring first of all. Because most men would not give two thoughts about their wife's friend's kids.

I would suggest you reach out to Dr. Wonder P. Drake, MD at Vanderbilt University. I just did a quick internet search and found that he was the principal investigator in a U.S. Gov't trial which was treating sarcoidosis using antibioticsi. Link below. By the way, Vanderbilt is where Dr Stratton and Dr Ram Sriram are (were?) using CAP to treat MS patients with MS.

https://clinicaltrials.gov/ct2/show/NCT01169038<

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.< 

Please refer to this study by its ClinicalTrials.gov identifier: NCT01169038

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Locations
United States, Tennessee
Vanderbilt University School of Medicine
Nashville, Tennessee, United States, 37232
Sponsors and Collaborators
Vanderbilt University
Investigators
Principal Investigator:Wonder P Drake, MDVanderbilt University School of Medicine

Here's another one.

http://www.ncbi.nlm.nih.gov/pubmed/15246025<

BullByTheHorns

I was accused of being

I was accused of being evangelical about the treatment at about the three-year point in treatment.  It's not productive.  I've learned to be more judicious about my rooftop declarations and traded them for offering an option that may help. Wink

You have to be VERY careful who you offer the information to and how you present it.  The range of responses is disbelief to anger, with humor, contempt, irritation, fear and all sorts of other reactions in between.  It's a hard road to travel, when you think you have the answer but the other person refuses to hear you. 

For example, yesterday my dentist mentioned he knows someone with severe psoriasis and wished he could help.  I told him about abxi a year ago, but he didn't realize this so-called 'autoimmune' disease (psoriasis) was a candidate for our protocol.  His responses were 1) where can I read up on this, 2) are there studies, 3)why doesn't everyone know about this if it's so successful, 4) this person is a medical professional and probably won't believe this treatment can help.

As for sarcoidosis, I don't recall anyone here mentioning it, but perhaps someone who reads here but doesn't post will come forward now to answer you.  My view is, anything that is called 'autoimmune' (the medical world's catch-all phrase for things they don't understand the cause of)  is a likely candidate for this treatment. 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi