Hi

I started a group for Buerger's Disease/Thromboangiitis obliterans (TAO) about a month or so ago, which has now disappeared with no sign of even a word of explanation from DailyStrength. Very disheartening as there was some good info posted and it's a challenge for me to keep information organized and available especially because I'm dealing with A LOT, not only my diagnoses but I've tried learning more about some of the things that affect friends or family as well since the origins of these illnesses too seem to mystify physicians.

I may have a misdiagnosis, but I haven't been able to overturn the diagnosis in the years since I received it - I wish I could, then maybe people might stop screaming at me about what a great big dummy I am because my limbs are all going to be amputated and it's all my own big stupid fault because I can't figure out how to quit cigarettes, but even for as much literature as I've looked at, I can't come up with a differential diagnosis for the symptoms that seems to stick.

Between the fact that seven or eight years ago the doctor insisted I'd have lost all my limbs in five years if I kept smoking but I haven't lost them, and the fact that tobacco use by Caucasians seems to be hundreds of years older than the first confirmed cases of this "tobacco-related" disease (a little over 100 years ago), I really begin to question just how much anyone really knows about it, or whether people just assume things about the disease and then start treating these assumptions like they're Gospel truth, simply parroting these assumptions from one "authoritative" text to the next.

When I first began to research the disease, the very first thing I read urged doctors to consider trying antibiotics if gangrene develops instead of being so hasty to cut off people's limbs - quite interesting considering my that I have a number of other "tobacco-related diseases" where a role for infection in producing symptoms or exacerbations has become far more obvious. That was the first question I asked, "Could this be another of the infections that I seem to be so prone to?"

I don't know how to explain why I still have these limbs I'm not supposed to have - one explanation may be that there may not be a single infection involved, and that maybe I'm lucky enough to be missing some key microbe. If we give science and medicine enough credit to say that there probably isn't a microbe that can cause gangrene that they're still completely oblivious to, perhaps we should look at microbes that already have some association with gangrene, such as Clostridium.

Amazingly, one medical journal article on Buerger's/TAO gives Clostridium infection as a differential diagnosis. I am taking that to mean that a Clostridium infection can appear so much like Buerger's that doctors may benefit from a special warning not to confuse the two - but I'm still not aware of any research that would have sorted the two out, I can't find research where anyone has EVER checked patients with the diagnosis for Clostridium infection.

So far we have research that might lead us to expect to find infection with spirochetes (there have been compelling reports of both various Rickettsia species, and the common periodontal bacteria Treponema denticola - "Syphilis' sister" if you will given that Syphlis is thought to be caused by Treponema pallidum), and with gingival bacteria (Porphyromonas gingivalis). Periodontal bacteria seems to be kind of a theme in bacteriological studies of Buerger's, perhaps since being keen to blame Burger's on tobacco, it was hypothesized that periodontal disease (i.e., bleeding gums) gave these bacteria a point of entry into the blood, although especially if things like Clostridium may be involved, perhaps the point of entry in some cases might be somewhere along the gastrointestinal tract?

Be forewarned that some of these studies reported being unable to culture these bacteria from blood draws, the infections were instead confirmed by subjecting carefully extracted tissue samples to DNA analysis, and I'm pretty sure people need to be asking what that means, besides that your doctor can't necessarily expect to blood work and confirm an infection?

If there still were a Buerger's/TAO forum on DS, I would post this there because it's more recent research that seems to be finding... guess what, more of same?

Thromboangiitis obliterans episode: autoimmune flare-up or reinfection? Mohareri et al 2018

...BACKGROUND: The possible role of infectious pathogens in the development of thromboangiitis obliterans (TAO) was considered soon after the disease was first described. However, it is not yet known whether infectious pathogens induce thrombotic vasculitis or if they cause a type of autoimmune disease. To investigate whether TAO relapses are more likely due to reinfection or autoimmune flare, the serum levels of toll-like receptor (sTLR) 4, sTLR2, C-reactive protein (CRP), and neopterin were evaluated in TAO patients during both the acute and quiescent phases of the disease as well as in a gender-, age-, and smoking habit-matched control group... CONCLUSION: These findings indicate that the trigger of TAO might be Gram-negative bacteria, which can be hidden or immunologically suppressed in the quiescent phase of TAO...

https://www.ncbi.nlm.nih.gov/pubmed/30319267

Don't let the article fool you, I have medical literature saved somewhere that features lavish illustrations of bacteria methodically building blood clots in a human host, and then living in these clots which are described as a refuge from the immune cells that would normally hunt down these bacteria and dispose of them. I'm not sure the matter is really up for debate as to whether bacteria are capable of promoting thrombosis.

That's about all I really know about it, I just really enjoy typing with these hands I'm not even supposed to have, and am about sick to death of people telling me how I'm just bringing all this trouble on myself or threatening me with having my medical care cut off due to the "self-inflicted" nature of my complaints. At least I'm TRYING to research and understand this disease, which seems to be more than I can say for a lot of doctors, including mine.

Rant off...