posted
I am getting weeks 5-6 of iv rocephin at the local ID specialists infusion clinic under the care of my llmd.
In order to get approval I had a "consult" with the ID doc. He tried to convince me to drop treatment. Here are some of the pearls of wisdom from our conversation.
1) the lyme disease testing is good. If you don't test positive on a western blot, you don't have it
2) ticks are not active in the winter at all therefore no new lyme cases present in the fall
3) there is no babeosis in our location (the hudson valley) even though 2 members of my family test positive and the local center for ecosystem studies found 44% of ticks carry it
4) there is absolutely no therapuetic benefit from rocephin beyond 28 days
5) azithromycin doesn't kill lyme spirochetes
6) lyme spirochetes don't hide
7) even aggressive syphillis treatment is 21 days oral meds at the most
8) no one is better after treatment because the inflamation from lyme (or what he thinks I had- erlichiosis) can take up to a year to resolve
9) a spinal tap will always show positive if there is cns involvement from lyme
10) the herxheimer reaction is a myth- it only occurs in syphillis, not lyme disease
Anyway, I read his NEJM article that chronic lyme doesn't exist. The only problem is when I quit oral abx, I relapse, and I'm not willing to spend the rest of my life in bed because of their dogma!
I am going to get treated and I am going to improve.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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quote:If you test negative, you could still have the disease, but your antibody level is too low to detect. In that case, your doctor will treat you according to your history and symptoms.
quote: These results show that antibodies to B. burgdorferi may be present in low levels or even absent in patients with culture- or PCR-proven late LB. Therefore, in addition to serological testing, the use of PCR and cultivation is recommended in the diagnosis of LB.
And just this week, in new guidelines from IDSA, different docs this time, on treating encephalitis:
quote:Table 5: Spirochetes -- Serologic testing of CSF {spinal fluid} (ELISA plus Western blot); CSF antibody index; CSF PCR (low sensitivity)
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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tailz
Unregistered
posted
I checked off every symptom of Lyme (or some infectious disease) with the exception of 'enlarged prostate' (and I'm female), and STILL an ID doctor told me, "Your symptoms are not consistent with Lyme - I see no reason to give you antibiotics."
One week later I got my positive Lyme result from IGeneX. Several months after that (and after some IV Rocephin), I even tested positive for Lyme through Qyest, and several months after that, I pulled a positive for babesia through IGeneX.
These ID doctors are almost robotic - you can tell they had this misinformation drilled into their hollow heads.
I flipped out on the ID doctor who said this to me, and he left the room and sent a nurse in to ask me if I needed some water. Yeah, if the water is laced with IV Rocephin maybe.
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posted
When I got lyme last spring, I pretty much had to diagnose myself. I got hit hard and fast, my symptoms were not subtle. I'm the kind of person that doesn't go to a doctor unless I am dead or bleeding profusely. So, when I thought I was dying, I went to the best hospital in the area, a renowned university hospital, expecting to receive the best treatment.
I went to ER because pain and joint inflammation was horrendous. By this time I was already suspecting lyme. I was in so much pain and was so swollen, I couldn't even bend my knees to sit on the edge of the gurney. I told the ER doc that I had been exposed to ticks while hiking. His comment; "there is no lyme disease in California".
So they set me an appointment to see one of their Internal Medicine ducks. I told him I had been exposed to ticks, and suspected lyme. His comment: "there is no lyme west of the Rockie Mountains."
He had me see one of their rheumatologists. I told her I had been exposed to ticks and suspected lyme. Her comment: "I trained in New York, so I am familiar with lyme. This is not lyme. I am 95% sure you have rheumatoid arthritis."
Fortunately, the next day I saw an LLMD, who recognized it and started me on treatment right away.
I had the pleasure of returning to the two ducks at the famous hospital, just to inform them that, guess what? I have lyme disease! They didn't take the news very well. Posts: 69 | From So Cal | Registered: Jun 2007
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
That ID doc is really not very bright even for non lyme stuff. First line therapy for syphilis is Bicillin LA injections.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
that very same doc is who told me i didn't have lyme
months later, under the care of a real lyme specialist, i tested positive for lyme, babs, rmsf, and mycoplasma...
apparently, that id group is funded by mvp insurance....don't quote me on that, though, i am not responsible for any kind of slander, it is just what i heard.
go figure i have mvp insurance and they don't want to cover many meds let alone a treatment that will work.
any intelligent doc in the kingston area should know that those symptoms should be prime suspect for tbi's...
shame on the id group that you speak of. i saw dr k there and wish i hadn't.
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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i got diagnosed positive via a different doc in april.
but was bitten and sick in sept/oct 07...went to that id group in november...was told i didn' t have lyme...
then referred there again after my pos diagnosis in april...that time he said i have acute lyme and must have gotten it during what turns out to be...winter!!!
i questioned him about that i suggested i had it remaining from the fall. his response? "hey, i do this for a living, ok?"
that was that, i was out the door on the way to a different doctor.
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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posted
John, that ID doc told me "I wrote the lyme coverage guidelines for MVP and Wellcare"
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
IDSA docs glom onto the klempner study and get paid upwards of $700 per hour to write guidelines that insurers profit from greatly. what better way to save an astronomical amount of money in endemic areas than say treatment isn't medically necessary? these same doctors get paid as much to rubber stamp denials for coverage of IV abx, no matter how much clinical support is provided.
my case had two feet of paper. denied. a local ID doc did my internal review. i had a physician witnessed EM rash (diagnostic of lyme), spect findings and neuropsychological testing proving symptoms reactive to borrelia, plus serology and pcr.
a friend of mine was admitted to a ny area hospital with total heart block (43 years old).
an adept er doc tested her for lyme and she happened to be screamingly positive even through local lab testing. er doc immediately started her on iv rocephin -- and it worked quickly on the heart, actually allowing the pacemaker that was placed to be removed!
however, in swooped the IDiot, to review the case, pull the IV after five days, hide her records, and proceed to deny that any further lyme treatment.
what gets me is, these doctors have absolutely no backing for their medical opinions, the klempner study is clearly flawed, they ignore 90% of the existing medical research on the disease, ignore existing medical files on the patient, and don't tell you what you do have or how to treat it.
it never ceases to amaze me...........
mo
[ 12. July 2008, 01:35 PM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
I'll send you studies directly refuting everything he said in a simple, organized, and concise fashion, including all references from pub-med, and the particular journal and facility the published peer reviewed article is listed.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, ID doctors are VERY robotic. Good description!
I am thinking, "you get paid to be a robot? sign me up! I'm really sick, but I could sure as hell do that....."
They are so good at saying "there is no Lyme in California....there is no Lyme in Indiana.....there is no Lyme in _____" You know where there is no Lyme? In medical schools!!!
(yes, I know they cover it....i'm making a joke)
And seriously, the one that cracks me up the most is #10.....the Herx is a myth!!!!!! HAHAHA. Sorry, but that is just misinformed. The others are brainwashing, but that is just denial of the obvious.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
holy cow, these docs make me sick...or helped keep me sick, is what i mean. they need to have THEIR liscences removed.
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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