This is going to be a LONG post, but I’ve been at this all day so forgive me.
Rosie posted a link to this article on 12/28/09:
http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed
and I found the following I’m quoting from that link to be quite revealing:
"The use of steroids in Crohn's disease and other immunosuppressive therapy are considered contraindicated in pulmonary tuberculosis, exacerbating the disease. However, the detrimental effects of immunosuppressive drugs on mycobacterial infections are not as pronounced as believed. Steroids in combination with antimicrobial agents have been used for treatment of leprosy and in tuberculosis and other mycobacterial infections …. Studies in cattle with paratuberculosis have shown that massive corticosteroid administration does not significantly influence the clinical manifestations or outcome of the disease, although it was expected to."
And this may explain why so many people have problems getting off of steroids, as they may simply mask the symptoms for a time, but do not resolve the underlying condition that is the cause.
So, after reading through all the links on this thread, and also on the thread that Tex referenced, I started to ask myself what connection there would be between MC and the use of anti-biotics? What connection would there be in the use of NSAID’s, or in HRT – all of which are known to be connected to MC? If we didn’t have “infections”, if we didn’t have “pain”, if we didn’t have menopause (for us ladies here), for whatever reasons then we WOULDN’T be treating those things for it in the first place. So, is it possible that all of these connections made some sort of sense? We wouldn’t be using these things if we didn’t have a reason already?? Would we??
So, Tex said:
Quote: (And, to add to the difficulty in capturing a glimpse of them, am I not correct that all mycobacteria are fungi?)
Surprisingly, (sorry, Tex) it would appear that you are wrong about this, see the link below that led me to todays endless search that has been so prolific, IMO. So, I started here:
http://www.wramc.amedd.army.mil/Patient ... seases.pdf
Where I found this:
"The name does not imply that mycobacteria are fungi; rather it describes the way that the tubercle bacillus grows on the surface of liquid media as mold-like pellicles when cultured. (19) When taxonomists allocated Bacterium tuberculosis and Bacterium leprae to the genus Mycobacterium, they morphed into Mycobacterium tuberculosis and Mycobacterium leprae. (20)"
And links within this article referred to so many things that clicked for me, this one in particular:
"Atypical mycobacteria may cause skeletal infections. A large outbreak of spinal infections after discovertebral surgery was reported in 2001.42 Tenosynovitis, multifocal osteomyelitis, septic arthritis, protracted carpal tunnel syndrome, and spondylitis implicating M chelonae, Mycobacterium kansasii, MAC, or Mycobacterium xenopi have been described in the literature.43,44,45,46,47 Keratitis and endophthalmitis after intravitreous injection of steroids or other ophthalmoscopic procedures secondary to M chelonae invasion have been reported. Although most of those infections secondary to atypical mycobacteria have been described in the adult population, cases of cutaneous mycobacteriosis manifesting as cellulitis, skin abscess, or sporotrichoid lesions secondary to M chelonae abscessus and M kansasii have been reported. M kansaii and M marinum have been reported in aquariumworkers.48,49 M avium– associated typhlitis mimicking appendicitis has been described in an immunocompetent host."
I’ve been told at various times that I had typhlitis, appendicitis, tenosynovitis, Rheumatoid arthritis, carpal tunnel, my sister was diagnosed with spondylitis, but NO tests for any of those have been positive. I’ve had hideous presentations of skin disorders that were NEVER definitively diagnosed but were supposedly Psoriatic Arthritis or eczema where the skin peeled off my hands and feet in sheets. I’ve had boils in my groin and “spider bites” on my legs that led me to assume, after internet research, that I had MRSA – which led to my massive antibiotic regime that my MD prescribed because “MRSA was so common now she didn’t need to test me” that resulted in the 2 years of diarrhea that led me to the ultimate diagnosis of MC, which led me here.
So, I was in LA when this thread was posted and clearly not paying attention to my own issues, but today when I saw this thread and read all the links within and this led me to endless sites and endless connections to my own symptoms since early childhood.
Specifically- my first “problem” with diarrhea and pain occurred when I was 9 and w/o going into details of my traumatic childhood, this occurred with a major stressor that presented with signs of appendicitis. I did not have appendicitis. As I matured I developed other “signs” of disease. I eventually was diagnosed with Endometriosis when I was 22, after YEARS of pain. I also have at least 1 sister who had this. I had a hysterectomy at 24, she at 26. After my hysterectomy I had years of pain that was initially diagnosed as Typhlitis. At 32, after 8 years of partial bowel obstructions, I had a complete bowel obstruction because of scar tissue – presumably because of the hysterectomy. I had 2 kids and there was no way for me to not do any heavy lifting for 6 wks post op w/o any help. I accepted the blame for the scar tissue.
Prior to my surgery to remove the scar tissue, I asked my surgeon to check out my appendix while he had me open. His report was that what he did was to snip the adhesion to release the kink in the intestine, that the intestine was highly inflamed and he was just so glad he did not have to cut into it for fear of peritonitis and was just hoping that this would resolve my problem. He looked at the cecum and where the appendix should be and found the appendix to be completely "dried up". With 2 kids and no health insurance or internet, I just accepted this, but clearly this should have indicated something was wrong – even then.
So, today I did this search for research in the past year:
http://www.google.com/search?hl=en&as_q ... afe=images
Which eliminated all kinds of research that debunked a connection that I had previously been researching on Mycrobacterium Avium complex and it’s connection to MC. But what initially led me to follow this course today was this link:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2168579/
"We found a highly significant association between Mycobacterium avium subsp. paratuberculosis infection in the intestine and IBS. People with a Mycobacterium avium subsp. paratuberculosis infection were 17 times more likely to have IBS than people without a Mycobacterium avium subsp. paratuberculosis infection. The validity of the methods and the results of Mycobacterium avium subsp. paratuberculosis detection in IBS are supported by the finding of a Mycobacterium avium subsp. paratuberculosis detection rate of 87% in the Crohn's disease control group in this blinded study, in close agreement with the findings of previous work (59). The finding of Mycobacterium avium subsp. paratuberculosis colonization of the intestinal mucosa of a minority proportion of subjects in the non-IBS/IBD group is entirely in keeping with the population biology of multihost pathogens (34, 76). Mycobacterium avium subsp. paratuberculosis has been cultured from the blood of people with Crohn's disease (45). In subsequent work it will be interesting to see if the systemic symptoms that occur in individuals with IBS are associated with the presence of Mycobacterium avium subsp. paratuberculosis in blood."
I don’t know where to go from here. Do we all have Mycobacterium avium subsp. Paratuberculosis? Is this the key? I don’t know. Is there a genetic predisposition for this? It would seem so from my research. I will do more research on this, but this seems to be to be a possible explanation.
Joanna, I was born in Fergus Falls. Small world.
And I forgot to add that during this whole time of what were weird "bacterial type" infections, I also had what seemed to be endless UTI's. I have no idea how that would correlate to all of this, but all of these "infections" ended after I did the antibiotics for MRSA.
And just to be clear - Last year I requested a blood test to show the antibodies for my ever having had MRSA - it was negative.
I have ALWAYS believed that there was a bacteria or fungal related correlation to this.
Since I took my MRSA related antibiotics I have had a complete cessation of all my prior symptoms (prior to my MCC-MCL diagnosis in Oct. and the protocol I have been following since then with my ND has stopped the D) EXCEPT that I still have a crust that accrues in my nose and I also have what presents as a "weeping" in my ears in response to stress. I will awaken in the night hearing my heartbeat in the ear that is on the pillow because my ear is weeping a fluid that ultimately seals off my eardrum. Usually I can clear this with water on a Q-tip, but occasionally it will last for a day or two when my hearing is basically closed off by some sort of crust. My MD has given me Fluocinonide for this, which seems to help, but now that I look at what it is for:
http://en.wikipedia.org/wiki/Fluocinonide
It only makes me nervous to use it anymore, since "Fluocinonide ranks as a "high-potency" (second-highest rank) topical corticosteroid. Minimal amounts should be used for a minimal length of time to avoid the occurrence of adverse effects.[2]" and I am probably damaging my hearing because of it with long-term use, when what I really need to do is to kill the bacteria that is causing all of these problems in the first place.
But, then I am only just a stupid patient.....and so it goes. We were out of town over the weekend and prior to that I had eaten a catered lunch on Friday that likely had MSG (gluten)- something I've long known triggered body pain - and then we ate dinner at a Mom & Pop type restaurant where I must have had another gluten exposure, so I have been not doing well the last 3 days, but it is clearing up - thankfully.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.