Interesting Autoimmune research article, antibiotics?

Hey Marji, Lots of the members on the Crohn's Forum are on long term anti-biotic therapy. They know there is a link between bacteria in the gut and Crohn's. Some of the bacteria, though, is really resistant to meds. Ya . . . it would make you wonder if Lupus could be triggered the same way. Lots of folks get some good results just by using a good pro-biotic. This would be the active cultures found in fermented food like yogurt and keefer. pro-biotics are also available in pill form, but you have to research it a bit to make sure you are taking live cultures. Ginny takes acidophilus (the culture found in yogurt) and she has found some good benefits from it. I hope you get to feeling better soon!! Blessings!

Rosie and Hippi--
That's really great it is starting to get going in practice, at least for Crohns. The probiotics definitely help. The TB thing was interesting because I read on about links between CNS lupus and TB, TB binding with DNA, and development of ss and ds DNA. And they say a third of the world tests postive for TB. That's alot.

Hippi, I'm so glad about your son. I'm going to talk to my doc about it. My TB friend says they aren't treating my TB with strong enough antibiotics, so I've got to see how my liver is and get more. For the first time in twenty years, mentally, I feel better. What's sad is that some of this research is twenty years old. The Marshall Protocol people, I don't know if they are good or not, but they have their own trained doctors and use lights, vitamin D moderation and antibiotics to treat a variety of diseases and it is very long term. They say it is difficult but you can get your body back in shape in some cases. I really think there is definitely something to this. My autoimmune disease started suddenly, with loss of pigment, and HCV antibodies and active TB. I know I just suddenly as an adult got sick. I also had a ton of strep infections as a child too. And pneumonia three times. Who knows. They seem to focus on cell-wall deficient bacteria for some diseases and from the tiny bit I can glean, it seems to make sense.

I was just so excited to find this stuff. My rheumie thought an infeciton caused mine but when I asked him what, he said he didn't know. Some say gram negative. So many things seem to cause this.

I'm so happy things are better for people and that the docs are doing this for some patients.

Hippi--
I don't know how your son is being treated, but in my case for even latent TB I should be on at least two, usually four these days, antibiotics because it is such a resistant bug. The big problem is that doctors seem afraid to give a high dose--there are many reasons why that are arguable--but if they give a long dose that is too low, the bacteria become more resistant. This is what they did with my throat infection the second time. For me, even 1000 mg of Penicillin is not strong enough to put my recurring infection back in the box, let alone kill it altogether. The doc in the ER who treated me for my pelvic/UTI infection gave me stronger drugs.

In the case of TB, it enters the body usually through the lungs though it can come in other ways and be harder to trace. It looks for any small scars you may have anywhere in your body, liver, spleen, anywhere, and it settles in them and forms a waxy coating over itself to protect itself from attack. This coating also keeps it somewhat dormant while your immune system is constantly attacking it. It then begins to form a calcified coating over itself, making it even harder, if not impossible to treat. Calcified lymph nodes can be removed surgically, then decalcified and biopsied to determine what kind of infection exactly resides inside. But the ENT has to be very very very good because if looking at some salivary glands the infection doesn't form gnaulomas (people think TB or other similar infection=granuloma always, but exists in lympocytic infiltrates. For me, the lymph nodes are calcified in various parts of my body near pain and vitiligo sites and were mapped on a full spine xray as well as gallium scan, which showed areas of infection.

Perhaps you could persuade your doc to give your son a gallium scan if it is safe for him, to determine where the hot spots still are, if any. It is also a good baseline for spreading, especially if he may have cancer risk which we all seem to have. The gallium picks up any infection. This might help you make a case for stronger or continuation of antibiotics. Also, if he has some calcified/inflamed lymph nodes, you might talk about a thorough needle biopsy or in some cases removal.

Hopefully, docs will realize that if the infection does affect the lymph nodes, it can cause a problem even after calcification--which is also a precancer stage--and removal and proper evaluation to find the right bacteria and the right antibiotic treatment can help.

I would fight for better whole body evaluation and treatment. That gallium scan really made my docs not only believe that I was ill all over, but to know where I'm really having trouble. If it spreads, they will see it on the next one. The xray was good too, though a good reader may see that stuff on the gallium scan too, because you can see bone.

I'm so glad you found a good place and are doing this because I think it will really help him. You are a good mom!

I will have to read that book, In Search of the Sun. Souds interesting.  There's a book out, something about the new "cure" for Scleroderma. It sounds like one of those goofy books that we all are wary of but it does deal with the antibiotic therapy.  I guess they had to title it that way to get normal people to read it. 

The problem I have had is that when I get an infection, the docs say "I don't want to give you too strong of an antibiotic because I don't want you to become resistant to it."  The problem with that is that they act as though our bodies become resistant--like we would to opiates, when really it's the bacteria that become resistant. And not giving you a strong enough dose causes us to not fight it off all the way sometimes.  And when I go back and say, "I'm still sick" they don't try another antibiotic, culture, or try a longer dosing of the antibiotic, they just claim it's autoimmune or "in my head" and there's nothing they can do, even with physical evidence. The fear that "we" will become resistant to antibiotics has driven docs to not dose high enough, then upping it later doesn't work because the bacteria is resistant at that point, so you need to switch.  I received this kind of treatment with my last sialadenitis/lymphadenitis/cellulitis problem. I was on 500, then 800, finally 1200 mg of Penicillin. No other antibiotic was tried.  They should have tried IV Clindamycin first, as they did with my first case of cervical lymphadenitis, and if that doesn't work, they usually do surgery.  I had to wait six months instead, taking penicillin that was just making things worse by destroying my GI tract. I hope docs get a better handle on this. If we have autoimmune disease, we obviously might have problems fighting infection because we are stressed to the limit already.