A few items from an LLMD that is an ID

I finally had my first appt w/ an Infectious Disease Dr  w/ an excellent reputation,  on whose waiting list I have been for over a year, and who diagnoses & treats Lyme, AIDS, MS, CFS, Fibro, etc. Has been for at least 20 years.  He accepts insurance and is on most plans.   The Lyme Association of Greater Kansas City advised me that his patients get better and get well.

Two things:

1) He Dx'ed chronic late stage Lyme.  He discussed the fact that in most of these cases, long term abx and/or abx treatment for a lifetime is needed to eradicate completely. (note: for those of you who cannot or will not take abx, he did not exclude ANY other possible treatment.  And he did acknowledge that every patient is different).

2) I asked him about this controversy over Lyme and long term abx and Drs losing their licenses.  I asked him why he was able to prescribe such long term abx (he has a few patients who have been on abx for years, and will be for life) w/o risk to his license and practice.

He told me that it was the matter of oral abx vs IV. He told me that he could prescribe 4 weeks MAX of IV abx. And that if I was dying and would die today w/o another IV abx, insurance would say no.  Said he has never had a problem w/ long term oral abx.  He discussed a few patients who would trade their first born child for abx. 

And, of course, there are many people who cannot tolerate the oral abx, so that is a problem. However, shots of penicillin may be effective for those who can’t tolerate oral. And it’s cheap.

3) ANd Just a note to help those w/ WB results.  All that I have (from Quest) is a positive reaction on band 39, IgG.  Already knew this was significant, as this band is the most lyme specific band of them all. This is not enough to dx lyme for the CDC, or even Igenex.  But my Dr STATED that the latest research, as well as the leading LYme Drs, state that a positive band 39   diagnoses Lyme disease.

When I asked him if this might possibly indicate a past infection (hence, the antibodies), or does this necessarily indicate an active infection, he stated there was no way to know.  And so he is working under the following: Band 39 shows I was, at least at some time, infected w/ Lyme, hence, the antibodies.

But add to this, my CD57, list of symptoms, and the fact that I reacted favorably (after 2 months!) to Amox, was well for a few months, and then became ill again  ---- this indicates a live infection to him. And so, he will operate on that basis. (ie; more Amox)

Just thought a few of you might have questions about your WB bands. At this time, just ONE species specific band (and 39 is the most specific of all), and this indicates Lyme, ESP if you are symptomatic.

A LLMD tested me for Bart last year and it did not show. He diagnosed Bart based on my symptoms, however, my new Dr said he is not concerned w/ that right now. From what I've heard about this Dr, he generally uses one abx at a time, depending on the state of the patient.  When he heard the words, 'pain free' come out of my mouth (in reference to a couple of months after the Amox), he was all over that.

So, no, Amox is not necessarily his abx of choice, but it was his first choice for me since I'd experienced a lot of improvement after those 2 months of HELL.  He said, of course, it is entirely possible that the Lyme only went into hiding while I had Amox, but he wants to try it for 6 months and see where I'm at.

He is concerned about Babs, tho. I tested positive last year and was not treated for it. He said, believe it or not, he's had a couple of patients who had babs get better w/ abx. It is possible it is not specifically the abx that kicks it, but the improvement in the immune system. I tested positive for Babs microti, but there is another strain that he's seen that he's also testing me for.  So I don't know yet what he will do in regard to those results yet.

YOu know, I don't know if he's the BEST LLMD in the world, BUT, he is totally dedicated to all these problems -- all the illnesses I named above. (I posted a link to a paper he wrote on HHV6 awhile back)  He says Lyme is so darned difficult to figure out that he believes a lot in 'don't fix if it ain't broke'. That is why I'm starting on Amox. I tolerated it well physically, except for the herx from hell (mentally, not physically)

He did talk a little about other abx, it is just that everyone responds differently, so he takes it as it comes.  ONe thing different that I have noted, is that he usually treats the lyme first -- even tho other Drs choose to treat co-inf first. But it's the lyme that compromises the immune system.

No, he did not mention chladmidia pneumonia and I really didn't have any reason to bring it up.

This Dr either had lyme or had family w/ lyme -- I forgot and I forgot to ask him.  But he is involved w/ all kinds of immune disorders, not just lyme.

As for tonsils and appendix, note in my signature that I had both of these removed within a couple of years after a bad tick bite I got in '72.  He agreed that I must have had a TBI but said he didn't know which one would cause the bad chronic and acute tonsillitis I kept getting after that tick bite.  I miscarriaed, too, I think about 2 yrs after the bite. and then about 1 yr later I had appendicitis while 5 months pregnant.  We'll never know about all that.

Bucci, are you asking about those because you had lyme as a child and those (tonsils and appenx) were affected?  Or are you asking because you believe that having these removed made you more susceptible to Lyme?

I asked him (being and ID Dr) if he believed in detoxing. He laughed and said that depended because 'detoxing' covers a huge range of things and he does not believe anything extreme is helpful. As for epsom salts and peroxide baths, he said he did not know. He just said that epsoms feel good to soak in and if this makes you feel better, then you should do it.

I did not ask him about magnesium. He has a full list of all the supps and meds I take and did not comment.

I'm so disappointed in myself, having waited so long to see this Dr and then forgetting so many questions!

SO different from so many treatments on here, so it will be interesting. And yeah, he stated positively that I will feel worse before I feel better, so I am dreading that. But he's hoping that a lower dose of Amox will be more appropriate for me.

Also note that he prescribed Amox w/ Augmenten. (which is usually in the high doses of Amox).  I found this, 'This combination results in an antibiotic with an increased spectrum of action and restored efficacy against amoxicillin-resistant bacteria that produce β-lactamase'.

I suffer w/ dental lyme as well. My entire mouth is SORE, it throbs, and rinsing w/ mouthwash hurts like heck; teeth very sensitive (even to toothpaste), have had several extractions, root canals, etc, a few teeth that have broken, and one that just fell out, for no apparent reason.

Bucci -- I am not on top of everyone here. Please tell us about your hep C (and if you just did, send me there) That is so darned serious, far moreso than lyme.  I have a bro-in-law who HAD it, and swears he cured himself. Quit drinking and smoking, of course, and gave himself injections of interferon.

And where are you and your Dad, w/ the LYme?