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Post by LymeEnigma on Aug 31, 2007 12:20:32 GMT -8
There is a lot of talk about Lyme disease blood tests being inaccurate (and there is a good amount of evidence to back that up), but there is also a lot of recommendations across various message boards to the private lab Igenex. I know that there has been a lot of press about the percentage of positives that come out of that lab, but one still has to ask: does Igenex have any better of a test kit than Quest or LabCorp? People are being shuffled off to Igenex, despite the fact that that no test is really that reliable, desperate for a diagnosis and cure to their terrible suffering ... but is Igenex really any better? I have had two ELISAs and two Western blots. The initial ELISA and Western blot were performed by Quest diagnostics; the ELISA came back positive, but the Western blot came back negative. The second ELISA (C6 peptide) and Western Blot were done through Igenex. That ELISA came back negative, but the Western blot came back positive. How's that for inconsistent? The way I see it, regardless of my health status, both Quest and Igenex each had one hit and one miss with my blood, and that leaves me questioning the accuracy of all of them.
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Post by enochroot on Sept 21, 2007 18:01:19 GMT -8
I was recently begun under treatment with Dr "D. C." whom you mention in your story - the link that got me here I had a negative western blot(Quest) by my GP and the Enzo Labes test by Dr C was also negative, for lyme AND co-factors! Yet here I was sick, and no better after 4 weeks of twisting in the wind under my GP who said "it's a viral thing it will pass" I got tested for HIV, Hep A,B,C, CMV, Mono, Epstein Barr, and Toxopalsmosis - all neg! Except the toxo, which they said indicated an old exposure - "not acute". Finally my GP told me "just go back to work" and refused to extend access to my sick time - I burned a couple of weeks of vacation time as I searched for a Lyme doc, as my own research of exposure/symptoms left it the most likely course of action. Dr C told me at the onset "I don't know if you have Lyme, but I'd give it a 60% chance - and began treatment. Despite the negative tests. Got much better after 4 weeks of Doxy, then had a weeklong reaction(herx?)and he switched me to another antibiotic. Stay tuned.... I am glad to have discovered your site - !
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Post by LymeEnigma on Sept 22, 2007 5:12:46 GMT -8
I don't think I'm familiar with Dr. C; I live on the West Coast. Sounds like our stories are very similar, though.
The misuse of blood tests is so ridiculous. I can't tell you how many other people I've met who have also experienced delayed treatment due to their doctors relying solely on blood tests. It makes me so angry every time I hear it from someone new -- because we all know how important early treatment is. So many people have lost so much because of delayed diagnosis, and so many people continue to slip through the cracks. It's just infuriating.
That is why it is so important that we do what we can to promote Lyme awareness and education however possible. We may not be able to change the past and rectify the damage our doctors have done to us, but we can try to prevent others from sharing our fate.
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Post by enochroot on Sept 22, 2007 11:50:10 GMT -8
You quote him in your "my story page"
“Lyme disease presents formidable challenges because of the high percentage of cases that become chronic in the absence of early treatment”
Anyway, been seeing him since August 1st - been an up n' down ride - but what choice do you have?
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Post by LymeEnigma on Sept 22, 2007 11:57:15 GMT -8
Oh, that Dr. C. I thought you were talking about one of the doctors I spoke of personally; I didn't realize you were seeing one of my works cited sources. I take it he's a good doctor?
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Post by enochroot on Sept 22, 2007 18:59:01 GMT -8
To tell the truth I am so freaked out and confused by the contradictory stuff I have read over the past few months... I can only say "I think so" He is on the board of ILADS and such - more intense forums like Healingwell say he is "undertreats" - He has made comments that indicate he is not on the same page with Dr B about many things.
He doesn't seem to go for hitting you with many things at once. I am going back to see him Wed, he talked about "iv" Rocephen on the phone when I told him I was faring badly on this stuff (Cefuroximine) He took me off Doxy after 6 weeks of it when week 5 was(apparently) a"herx" I felt better at the end and into the switch but not well since -
What is your treatment situation now?
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Post by LymeEnigma on Sept 23, 2007 8:47:07 GMT -8
All of the contradictory information out there really threw me for a loop, as well. The more I read, the more questions I had ... and even fewer answers became clear. It seems to me that most doctors (LLMD or otherwise) are not on the same page with one another where Lyme treatment is concerned (or co-infection treatment, for that matter). Whereas many of these doctors may get around this by claiming their treatment is individualized, I say it's simply that they, like everyone else out there, simply don't have as many answers as they would like to.
Unfortunately, most of us here (or at any other discussion board) are not doctors. If members at Healingwell are claiming that Dr. C. under-treats, I must question both those members' credentials and motives. Are they adhering to Dr. B.'s guidelines just as strictly, perhaps, as an infectious diseases specialist might adhere to the IDSA's? Is there really any proof that Dr. B.'s guidelines cure people? I personally believe that many people are being over-treated, and while I may not have the credentials to substantiate that my motives are simple: I believe we all deserve to know the truth about our disease; I believe we all deserve reliable, affordable treatment, no matter what stage we're in; and I believe a lot of people have been misled by this doctor or that, given false hope, and spent way too much money on treatments that, at most, seem only capable of providing temporary relief. While I have heard of the rare person who claims to be "cured" after a few years of expensive i.v. treatments, it seems to me that it is more common to talk to the person who has been on antibiotics for three or four years and "relapses" each time s/he tries to go off - no matter how aggressively s/he has treated in the past.
I have been off antibiotics for a little over three weeks now. I am in the process of trying to discern just what my "normal" symptoms for this time of the month should be, compared to how I currently feel, and whether or not my symptoms are remaining stable. I am taking cat's claw and pau d'arco as supplements, exercising once or twice weekly, and eating a healthy diet. Right now I can only cross my fingers, hold my breath, and hope for the best....
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Post by enochroot on Sept 23, 2007 19:28:29 GMT -8
thanks for that! Seems sometimes to be lonely in"The Twilight Zone" I am considering seeing Dr Fallon, as he is near me (live outside NYC) Dr Gaito and D Fein are here too - My Mom wants me to "start from scratch" at a big place like Mayo Clinic or Johns Hopkins. I need to find treatment that can 1 - PROVE out it IS lyme or Lyme related 2 - Be at least somewhat in CIGNA! The expen$e is brutal...
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Post by LymeEnigma on Sept 24, 2007 9:49:18 GMT -8
If you have access to Dr. Fallon, SEE HIM. I have read a lot of his work, and I personally believe the man is brilliant. Columbia University's Lyme disease Research Center, which Dr. Fallon is a researcher, conducts ongoing studies on Lyme disease. You might want to see if you qualify for one of the future studies (I'm pretty sure it's at no cost to the patient); you can find a list of upcoming studies here: www.columbia-lyme.org/flatp/resstud.html
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Post by enochroot on Sept 24, 2007 18:33:33 GMT -8
Dr C. put me "on hold" today - went to see him, told him I felt really bad on the Cefuroxime right from starting it. Agreed to stop it, but wouldn't start me on anything else, wants me to read up on and be aware of the risks of "iv" Rocephen and come back to him. Meanwhile he wrote a letter to cover another two weeks of sick leave. So for the first time in almost 8 weeks I will be on no abx - I felt scared leaving his office, as silly as it sounds.
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Post by LymeEnigma on Sept 24, 2007 20:30:05 GMT -8
Wow ... I can understand why you are scared. I can also understand why Dr. C. would want you to know the risks involved with the i.v. and the recephen, but I'm wondering why he wouldn't try anything else in the meantime. Will you be seeing him again anytime soon?
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Post by enochroot on Sept 25, 2007 12:59:36 GMT -8
Yes. The same time - he made an appointment for two weeks - and like I said extended my medical leave ( a BIG thing as I am the breadwinner in my house) sick pay with all these uncovered bills - is tough these uncovered bills without sickpay would be a disaster. I think I spooked him, by asking so much about the contradictory opinions about staying on abx and the real meaning of herxes. I think he wants me to come back more sure of what he plans to do (less likely to sue him?) as my cynical side wants to add! He said always "it's good to read" but maybe I should just trust more? ? He also offered to put me on Zithromax only, but I can't find any reference to that being effective, seems the Lyme world considers that an "also" drug along with several other heavy hitters. I have an appt with my new GP to try to get a referral to an infectious disease heavy hitter in NYC just to get some perspective - Would like to get a damn POS test too... But Dr C didn't want to rerun tests at this time. Said it would just cost me money and he would not trust the negatives anyway...
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Post by LymeEnigma on Sept 25, 2007 16:52:32 GMT -8
I know the fear of income loss due to this disease ... it is horrifying. I'm so sorry that you are going through this. I don't know how people work while dealing with this disease. I clung to my job with everything I had (it wasn't high-paying, but I loved what I did), and when I realized that I had no choice but to let go it really hit me hard. I was not the big bread-winner, however, so although we struggle quite a bit we have been able to survive.
Oral Zithromax, combined with Plaquenil, really worked well for me. I know that there is little to no evidence it can penetrate the blood-brain barrier, but it somehow cut out almost all of my really bad CNS/PNS issues: insomnia, rages, neuropathy/jabbing pains, "seeing ghosts," and hypersensitive ulnar nerve (waking with numb hands). It did not cut out the headaches (reduced severity and length), only reduced the frequency of stiff neck episodes (from once a month to once every two or three months), and the rheumatological problems only increased.
Hopefully you'll be okay until you see Dr. C. again; at least you can rest up in the meantime. Keep us posted.
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Post by enochroot on Sept 25, 2007 18:08:13 GMT -8
Thanks! I am THE breadwinner - work in NYC in live television news, very much a "stand and deliver" situation, think on your feet and the wrong course of action means consequences I am NOT up to my job.... Fortunately it is a "union" gig, so I have 65 paid sick days per year (doctor excused - NOT just "call in sick") Never ever thought I would use the system till this came along The Zithro/Plaquenil was what I was going to talk to him about but - I am afraid of eye trouble - already have some - a damaged retina in one eye from surgery a few years ago. He wants to do straight Zithro - I read that combo does do "cystbusting" ~ I read that was the job of the Plaquenil Now yah got me confused!
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Post by LymeEnigma on Sept 26, 2007 9:52:01 GMT -8
I know there has been a lot said online about plaquenil and zithromax/plaquenil combination. I have heard something about plaquenil and cyst-busting, but honestly I can't remember if the source was reliable or not. According to Dr. Burrascano, plaquenil alters blood pH to aid in the use of macrolides, which are supposedly less effective against Lyme in more acidic environments. Burrascano does not reference it, however, so I have no idea what, if any, studies substantiate this claim. Have you considered seeing an opthamologist before ruling out the use of plaquenil? From everything I've read (because I was freaked out at first about going on it, too), it's usually the higher doses that get people in trouble: 600-800 mgs/day, and it usually takes a long time for the problems to develop. I know some strains of Borrelia are resistant to erythromycin; I'm not sure if that means that all macrolides might pose a problem when treating those strains. One thing you could do is try the straight zithro for a couple of weeks and see if you notice anything; I noticed dramatic changes just within that short amount of time when I started (even before I added the plaquenil). I wouldn't give up on Dr. C. quite yet.
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