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Post by enochroot on Jan 7, 2009 6:43:41 GMT -8
The medical misery tour - a tragic trek through the American medical maze - year two... Chapter 6 - A Disappointing Outcome or "hopes dashed?" The rheumatologist I waited four months to see with the killer rep, tells me she thinks it's not CFS/Fibromyalgia but a chronic unresolved infection, and I really MUST see this super great infectious disease doc. I told her I have already seen FOUR I.D.s But she insists this one is really something, so I drag my ass into St Micheals in downtown Newark and lay out $375... Then the follow up visit over a month later when the labs are all in. The "house" turns out to be a hack... Calls me by the wrong name - asks me all the same questions as the first visit, indicating he did not bother to even read his own notes before seeing me, OR the detailed medical history I had left with him on my first visit. less than 15 minutes, if that, for $150.00 A script for vitamin D supplements and a script for an EEG? "Have you tried acupuncture?" How can acupuncture help pain that is throughout your entire body? All the previous talk of unresolved infections is harrumphed at. The same guy who snorted at the diagnosis of Fibromyalgia on my first visit now says "well Fibromyalgia"... Total of $375 (first visit) plus $150 = $525 (not covered by CIGNA) for what?  Whatta way to start the New Year  |
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jarla
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Post by jarla on Jan 7, 2009 18:06:12 GMT -8
Ugh. Did you at least get your lab results? Did anything show up?
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Post by LymeEnigma on Jan 7, 2009 21:20:16 GMT -8
That sucks. I'm so sorry that the visit proved fruitless. I am constantly in awe over what various doctors get away with. It's just ridiculous.
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Post by enochroot on Jan 8, 2009 9:10:46 GMT -8
That's another fun aspect - this guy is old, really old... and his staff is a bunch of old complacent houswives, the whole operation is years behind...They only take cash $$$ and checks! I couldn't use my medical acct debit card. They would not release any labs till I send a check(for the last visit) I told them they failed to give me a bill for the visit(I was so thunderstruck bummed I forgot to ask for one) When I called they told me "no bill until we get your check"  I said you need to bill me to get a payment - "that's not how WE do things" said they... But based on how little the guy did say I can assume the labs came back completely "unremarkable" doc speak for squat. He told me "you have toxoplasmosis" I said "yes, I told you that I had a titer for that in a test over a year ago but they said it was an old infection not active" "Ah, umm, yes" he said... Based on his lack of interest to pursue the "unresolved infection" topic I would say nothing of interest is there...But I will demand copies - when I actually pay him ;D |
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jarla
Contributing Member
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Post by jarla on Jan 8, 2009 12:11:28 GMT -8
Wow. that's just awful. I wonder why the rheumatologist sent you there.
How do they know that the toxoplasmosis isn't active?
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Post by enochroot on Jan 9, 2009 9:50:24 GMT -8
The titer is IGG - existing antibodies This explanation for CMV applies in general to Lyme, Epstein Barr and pretty much all infections (LE can correct me or elaborate!) ======================================= IgM and IgG. IgM antibodies are the first to be produced by the body in response to a CMV infection. They are present in most individuals within a week or two after the initial exposure. IgM antibody production rises for a short time period and declines. Eventually, after several months, the level of CMV IgM antibody usually falls below detectible levels. Additional IgM are produced when latent CMV is reactivated. IgG antibodies are produced by the body several weeks after the initial CMV infection to provide long-term protection. Levels of IgG rise during the active infection, then stabilize as the CMV infection resolves and the virus becomes inactive. Once a person has been exposed to CMV, they will have some measurable amount of CMV IgG antibody in their blood for the rest of their life. CMV IgG antibody testing can be used, along with IgM testing, to help confirm the presence of a recent or previous CMV infection. ============================================= I can only assume the rheumie thinks highly of him... But her impressions may have been formed a LONG time ago |
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jarla
Contributing Member
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Post by jarla on Jan 9, 2009 14:38:06 GMT -8
I guess this is what confuses me about IgG antibodies.
I know that it is generally believed that IgG antibodies point to a past infection.
Yet, we use IgG to help diagnose a current, active Lyme infection.
So, in the case of Lyme, IgG doesn't mean that the infection is inactive.
Could this be true for other infections as well?
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Post by LymeEnigma on Jan 10, 2009 19:12:58 GMT -8
The titer is IGG - existing antibodies This explanation for CMV applies in general to Lyme, Epstein Barr and pretty much all infections (LE can correct me or elaborate!) ======================================= IgM and IgG. IgM antibodies are the first to be produced by the body in response to a CMV infection. They are present in most individuals within a week or two after the initial exposure. IgM antibody production rises for a short time period and declines. Eventually, after several months, the level of CMV IgM antibody usually falls below detectible levels. Additional IgM are produced when latent CMV is reactivated. IgG antibodies are produced by the body several weeks after the initial CMV infection to provide long-term protection. Levels of IgG rise during the active infection, then stabilize as the CMV infection resolves and the virus becomes inactive. Once a person has been exposed to CMV, they will have some measurable amount of CMV IgG antibody in their blood for the rest of their life. CMV IgG antibody testing can be used, along with IgM testing, to help confirm the presence of a recent or previous CMV infection. ============================================= I can only assume the rheumie thinks highly of him... But her impressions may have been formed a LONG time ago I think you pretty much summed up the IgM/IgG specs. I wish your rheumy had been a little more forthcoming about her opinions BEFORE you spent more money on yet another ID duck.... |
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Post by enochroot on Jan 12, 2009 9:57:49 GMT -8
Thanks LE me too...  Jarla - Excellent question that cuts to the heart of "the art vs the science" of medicine. Depends on the expertise and experience of the docs you are dealing with, and which "school of thought " they subscribe to! That is as best as I can figure it out anyway. Seems most view it as a numbers game; if the titers are [what THEY consider to be] high then the infection could still be " a player" - if the titer is low, they seem to want to shrug it off.  |
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Post by cobweb2 on Jan 14, 2009 20:09:41 GMT -8
ACK- this discussion sends shivers up my spine.
I came away from my last PCP appointment with a handful of referrels for the Usual Suspects-Rheumy, Neuro, ID.
I expressed my concerns about going to the ID, and she said "Yeah-but he's really smart!" Ha
Anyway I paid out of pocket for over two years, but no more. These docs are all in network- IF I should decide to follow up, so it will be a minimal co pay.
I'm thinking of going just for the hell of it, or should I say amusement of it ?
No more out of pocket. I have this odd suspicion that my lyme was brought under control long before I came off treatment, and the misery I experienced was mostly side effects of meds.
I can't believe my body survived it all.
I did love the Rifampin though.
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Post by LymeEnigma on Jan 15, 2009 17:44:47 GMT -8
No more out of pocket. I have this odd suspicion that my lyme was brought under control long before I came off treatment, and the misery I experienced was mostly side effects of meds. I have had similar thoughts for some time, now. Although I still get flares, and my mental health has much to be desired, I still feel that I'm much healthier than most people who have been on years of antibiotics. I think balance is the key. The IDSA has it flat out wrong, when they insist that one or two months of doxy is enough to treat all cases ... but I see ILADS as the polar opposite of that extreme. I don't see the point of treating a pathogen for years upon years, when it is only going to sit in remission, waiting to reemerge later, when the coast is clear. For those who have destroyed their immune systems with overkill doses of antibiotics, it is obvious to me why they relapse so terribly, when the antibiotics are finally removed from the equation. |
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