On this page, they say penicillin is the answer to actinomycosis. Inside veins during one month, then pills. Tétracyclin could be good too. http://www.vulgaris-medical.com/v1/?...id_article=209
Can someone send this?

I think Pat already googled the remedy, including dosages. He just needs a doctor willing to prescribe it.

any news abt how he is now?

The most updated I can find:

http://slackbook.lizella.net/pat.txt

There is alot of conjecture floating around about Pat's illness and some of it concerns me as a physician to have it propagated on the internet. I debated long and hard about replying given that it is Pat's illness and physicians are trained to respect patient confidentiality. Given that Pat went "public" with his illness after keeping it quiet for several years I take as an act of desperation. In my opinion it is not a good thing to treat 3 years of relapsing arm pain with intermitant courses of ciprofloxacin because patients often have a more serious underlying illness. Pat is a good case in point.

Another issue is that any physician who perscribes any form of therapy is responsible for the success and failures of that therapy. This is well recognized (some would say exploited) by malpractice attorneys. I for one would not prescribe antibiotics without personally knowing what I was treating or being able to ensure that the illness resolved.

There are things that Pat described in his post that do raise the question of Marfan's syndrome.
Patients who have it are usually tall and thin, they have can have abnormalites of their heart valves.
Abnormal heart valves can get infected, commonly in people with poor dental care. Dentists are supposed to give patients with known abnormal heart valves antibiotics around dental work and cleaning. Once heart valves are infected it is very difficult to clear the infections and you can be left with a damaged heart valve that may need to be replaced. Damaged or artificial valves are also prone to new infections years after the first infection is cleared (Do a google search for endocarditis for more info). The treatment regimens often entail 6 weeks of IV antibiotics. Short courses of oral ciprofloxacin can just suppress the infection without eradicating it.

The Mayo clinic has a well deserved reputation and I am glad he is there. I believe they will not shoot from the hip and give him a perscription of Pen VK without knowing what they are treating. They will take responsiblity for Pat getting better and will check to see that his is improving with whatever treatment they give him.

I am not saying that you should not search the internet and learn about a symptom or illness you may have but please do not say "they will not not give him the antibiotic he needs". Pat deserves more than an internet diagnosis and antibiotics mailed to him. He needs a well trained, responsible physician that does a careful evaluation, arrives at the correct diagnosis, prescribes therapy that has been shown in clinical trials to be effective, moniters the response to therapy and for development of any side effects and most of all takes responsibility that he gets better. I believe the Mayo Clinic will do that and give Pat his best chance to return to his advocation.

1 members found this post helpful.

Thanks, shepper, for the insightful words. And WilliamS is also correct IMO.
I sent Patrick some suggestions for additional things he could do to support his immune system and heart, with links so he could research them and make up his own mind. I cured myself of cancer with "alternative" medicine, but like I told him, everybody is different, YMMV and all that... For some conditions a combination of allopathic and alternative medicine works best, but an accurate diagnosis and supportive health team is critical. Prayers and positive thinking are probably the best thing we can do for him.
He's in God's hands and everything is working out for the best for him whether he and we realize it now or not.

Dear Shepper:

I've been following threads about Patrick's condition here, on slashdot, and at linuxpackages.net[1]. Among posts by people who identify themselves as physicians, yours is the one that I found to be the most helpful in tone and content. I don't dispute anything you say, but you leave one important point unaddressed, as do all the physicians who have yet posted:

(from Patrick's email quoted by AxeZ )

Regardless of who is right about the diagnosis, Patrick is clearly in severe mental distress regarding his condition. To put it plainly, he thinks he is dying. Is that distress not part of his overall medical condition? Is it not the responsibility of the medical team to relieve the patient's suffering (both emotional and physical) in addition to addressing the underlying physical issues?

If there is a safe test that can unambiguously eliminate the condition that Patrick thinks he has, what reason is there to refuse to perform that test? (I omit cost as a consideration, since if Patrick were unable to pay he wouldn't be at Mayo.)

Again, I thank you for your well written post and I do not mean this as an attack on you personally. But it frustrates me to think that the mental anguish that Patrick is experiencing may be entirely needless.

-----
1: For those not familiar, linuxpackages.net is a slackware-specific site.

Someone with an update about Patrick?

To tortle:

Some infections require special handling and culture techniques to isolate
Google for 1) HACEK
2) Culture negative Endocarditis

And it is not even established that he has endocarditis although if his echocardigram showed a vegetation chances are very high he has it. Does anyone know what the ECHO showed?. Pat felt in his last post that he had an actinomycosis infection he got from inhaling a mist of dental plaque. Although Pat was not happy about it, I think it is a good thing that

1) His Doctors are talking to him - someone talked to him about endocarditis and their suspicions
about Marfan's syndrome

2) They wanted to do tests about the possibility of endocarditis. Although he did not mention it
I hope they did some tests that made sure he did not have an actinomycosis infection in his lung
(It is usually pretty obvious on a CT scan. In bad cases it has been known to eat a hole right
through a patients chest).

Lastly, I would recommend that you not come to a Slackware forum for medical advice. As you can see there are alot of opinions. And since I believe that this is not a medical forum I am going to refrain from additional posts to this thread.

I am from European region, and because of that not very informed about national medicine in region of "Uncle Sam" .
As i learned in University of Tartu, I used often well-known literature from US medical research Hospitals, and those seemed very good as textbooks.So it is strange to hear rumors like Marfran now from Mayo
Story of Pat seems to more like some sad X-files serial from TV.

Some things I want to point out.

1. Patients shouldn’t be treated on base phone calls and letters.
Believe in god, pray to him, but go to proper hospital and find good Doctor to seek medical help.
Do not run to around corner shamans, medicine mans or other charlatans.(I don’t say- all they do not have power, but rather most off them do have negative one).

For example in USSR they estimate about 25000 active so called witches out there.
And sadly outcome tends to be or placebo or lethal as more serious cases.

2. Even people with very high-level self expression capabilities have not learned to give self explanatory medical history.
Modern medicine is still ART, and it begins from proper handling of patient’s medical history.
To make proper diagnose you need ask a lot of right questions, to get information and put things to places.
Only after that you can evaluate findings of physical examination.

Pats given history is not perfect by far, and there is so big need for proper differential diagnosis, that it is pointless even to say what his primary malady is. Is he actually ill from actinomyces as primary illness? I don’t believe in any obscure or other very rear or mystical diagnosis including Marfran's syndrome. There is huge amount widespread reasons do exclude, starting from skeleton maladies or tuberculosis and etc.
But there exists Hospitals to make examinations, x-rays, sonography MRT or bronchoscopy if needed. Those things can’t be done on base off one letter, or phone call.

Reading about embolic investigations--- (OMG) did those nice guys’s think at all when they started from diagnose like that on chronically ill patient?
Most disorders, especially chronic ones tend to have widespread reasons, often related to habits, environmental factors or food intake.
Pat is speaking about poor dental hygiene, and here are really things one should consider-bacteremia, (peri-)endocarditis, secondary fungal infections and etc.

2. Don’t take me as some nihilist, but if he is eaten such doses of strong antibiotics, he's organism must be very strong by nature.
As can say-"still alive besides treatment"
There is no difference-self taken or cured by "doctor", but seriously mistreated.

3. For other's out there-most of us can only keep going, pray and do not seek mysticism in this story. I prefer even that no obstacle posts have made, not knowing about his condition from Pat himself or from doctors taking care of him (and later is excluded by medical ethics).

4. For Pat it is time to go and stay in good hospital, get good examination based treatment after exact diagnosis is made.
There may be more than one illness to treat, starting from teeth radixes and ending maybe with actinomyces.
Also I think besides slackware-dependent behaviors, he should take more time to himself after all this is over.
And keep calm, and why not to pray him too besides medicine.

Does anyone know in which Mayo Clinic Pat is at the moment ( location ) ?

egag

Seems that not only do we have disagreements between medical doctors on the one side and druids and alarmists on the other, but also between the medical doctors themselves. I don't think any of us are offering "advice" with intention that it be taken seriously. We know we're not qualified to make a diagnosis. We're just worried about Pat, and this is our way of showing it.

egag: my understanding is he is at the one in minnesota.

As to what seems to be a debate of modern medicine. I hope most Slackers are rational people. Modern medicine for the most part is based upon the scientific medicine as it should be. It may not be the best system to keep people from getting sick, but once you are sick as Pat is now, it is the best system in the world to diagnose and treat an ailment.

" but once you are sick as Pat is now, it is the best system in the world to diagnose and treat an ailment"

Too bad the patient so often dies. I get my figures from JAMA.

Patrick himself saw the sympton, wee yellow grains caused by a fungal infection of the lungs. Bet he's not being treated for that.

Mycotoxins are proven to be a major cause of disease, especially the difficult ones, and are grossly under-diagnosed.