Posted 7/22/2008 10:08 AM (GMT -6)
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!
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Posted 7/23/2008 12:12 AM (GMT -6)
This is really interesting. I also had a lot of strep throat infections as a child, and I just read the book In Search of the Sun, and the author mentioned that she had strep a lot as a child too.
~ Bee

God is the strength of my heart! - Psalm 73:26

Posted 7/23/2008 3:59 PM (GMT -6)
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.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Forum Information

Currently it is Friday, October 19, 2018 2:11 AM (GMT -6)
There are a total of 3,013,094 posts in 329,998 threads.
View Active Topics

Who's Online

This forum has 161917 registered members. Please welcome our newest member, MinkHollow.
145 Guest(s), 2 Registered Member(s) are currently online.  Details
Gemlin, asiangal555