Interpretation of Results and Course of Action

[louris]

My IgA and IgG results came back elevated (especially IgG) for Cpn during initial testing back in August 2009.  A repeat test, after my treatment for babesia (mepron, azithromycin), just came back showing normal IgA and elevated IgG (actually same value as initial test result).  The doctor doesn't see fit to move forward with a protocol for the Cpn at this time, using the IgA reading to support his decision.  I'm not sure how comfortable I am with this and haven't decided whether to lobby for continuing antibiotic treatment, whether to find another doctor (again :headbang:), or to sit tight and wait a few weeks until I can consult with a biological dentist to address what is apparently turning back into a dental cause of some ongoing jaw/facial pain.  Initially I had thought this facial pain was somehow related to an underlying infection that would be addressed by my current doctor.  Now he is suggesting I see a dentist. 

Would you lobby for treatment of the Cpn at this point, or would you wait to understand the dentist's assessment?

[Maz]

[user=290]louris[/user] wrote:

Would you lobby for treatment of the Cpn at this point, or would you wait to understand the dentist's assessment?

Hi Louris,

Just what I'd probably do, but I think I'd do both…get a dental assessment and continue with antibiotic therapy. If my current LLMD was unwilling to help, relying solely on a few limited tests, I'd question that he was truly Lyme Literate and would move on to find a reputable doc who would be willing to research my case and not give up on me until all symptoms resolved. 

Peace, Maz

[louris]

The dental assessment is a definite at this point.  There's a certain apprehension regarding this whole biological dentist business and where that may lead.  I can't say that I've known anyone or have read many accounts of individuals who have had experience with these types of providers.  I should have taken this initiative on my own a while back.  However, a potential dental cause was not so readily apparent, especially after initially working the dental side between 2002 and 2006.

There is also a certain fear regarding the outcome of this assessment on multiple fronts.  One of those is if some sort of silent, adverse dental business (i.e. infection) is going on and has been provoking a certain response from my immune system for an extended amount of time, what will happen when that problem is aggressively addressed.  Will things normalize or will something else break? 

Additionally complicating things is that I also wonder, and have wondered, about any “leftovers” from septecemia from years and years ago after surgery.  I was administered IV abx for 21 days.  While I felt loads better after the worst of that storm passed, I never felt quite well or right.  I've wondered if this “not feeling quite right” has been my immune system constantly working to keep these “leftovers” in check.  Far fetched I know, but I actually can believe it.  However, to try and articulate the way I routinely felt to a “run-of-the-mill” MD would have been futile.  I'd always envisioned they'd brush it off as “oh, that's related to your IBD and there's not a lot you can do about it” or else they'd tell me I was depressed and prescribe me anti-depressants just to get me out of there office.  No thank you on either account as I need a health care provider who gives a hoot.

Now, this current doctor (who is supposedly lyme literate) is not cutting the mustard in some aspects.  There are positives, but there's an awful lot to question.  I wanted disposition on the tick-related illness before looking elsewhere for help.  According to him, no lyme (although I still somehow think he thinks otherwise but is holding back).  Fine.  However, he seemed to jump all over the fact that my babesia test came back positive, and along with symptoms communicated to him, was quick to start me on treatment for babesia.  Also, the positive Cpn (IgA and IgG) and positive m. pneumoniae (IgG) remain unaddressed.  However, after this last visit, he suddenly fizzles out in his enthusiasm for tackling these apparent infections.  It's also hard to try and communicate anything meaningful when you can't talk without severe pain.  Very disappointing given the time (travel to Philly) and money invested.  It's all somehow nightmare-ish.

My facial pain symptoms have increased within the past few days without me changing anything other than stopping the antibiotics for babesia per his instruction.  I don't know if the “cold turkey” cessation of abx was too much but I imagine I'll find out.  I plan on notifying him of this fact.  At last appointment, he seemed to scoff at my M-W-F schedule of 50mg mino that I had utilized for six months (until it appeared fungus was getting the best of me).  I got the impression that he thought this was not enough of a dosage to do anything meaningful.  I tend to think differently.  He best be receptive to doing something about this recent increase in symptoms and not try to shovel me off on this dental provider for all the answers.  Once the dental side of things becomes a bit more clear and there is some direction, I think my next move might be to schedule with Dr. S (TN/GA).  Given the fact that the tick thing is apparently is a non-issue, I'll see if Dr. S is receptive to taking an AS patient on.

Thanks for listening.     

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