posted
The topic name is a metaphor to explain how I feel whenever I try to get medical help here in the netherlands. All my life there's been nothing but screw-ups. And I thought that was in the past, and Lyme would soon be, too.
Well.
A couple of months ago I finally got antibiotics, 3 months of doxy, 300mg. a day. A german doctor working at a laboratory informed me of what I needed. I then had a nice argument with my GP about giving me these 3 months. In the end she gave in, saying she was absolutely sure it's not Lyme, and antibiotics won't work, but if I want to go about hurting my body like that it's my decision. Just don't ever come back talking about Lyme, after the 3 months you can only come here with normal problems (this is where I raised an eyebrow).
Well, I went to the pharmacy, got my first month of doxy, threw up a lot, you know what it's like. After the first month I called the German doctor and told him how much trouble I was having keeping myself on antibiotics. He suggested I would pause the ABX and get back on them after a few weeks. I paused and found out all my symptoms were completely gone. As in, not there anymore. Boy, did I party my *** off
So now, my stomach is ok again, my weight loss is under control, I'm motivated knowing anything I may hate during ABX will go away and take Lyme with it. So I called my pharmacy and ordered another month. They said no. I raised the eyebrow again and called my GP, as it was a 3 month prescription and I'd only retrieved 2 months from the pharmacy.
GP's assistent said the doctor doesn't want you to take more than 3 months. I said I only took 1 month so far and the german doctor says at least another month. Assistent said prove it.
So I lowered the eyebrow again and called the pharmacy, asking them to tell my GP I had only come to pick up the first two months (I still have 15 days lying around here). They said sure thing and I called the GP again.
GP's assistent said it doesn't matter whether or not I took the whole 3 months, doctor's decided you can't have any antibiotics anymore. I raised the eyebrow again. Asked her how the GP could tell what I did or didn't need without seeing me or even talking to me. Assistent explained that my taking antibiotics for longer than two weeks for Lyme is a first in medical history and therefore can be stopped by the GP at anytime.
I raised the other eyebrow too, and explained to the assistent both her and the GP are ignorant hypocritical cows who should see about removing their heads from their own asses before trying to sound smart. I also said something really clever about ILADS but by then she'd hung up on me.
So I'm planning on getting an appointment monday or tuesday and telling my GP how I'm starting to feel about this whole Lyme-doesn't-exist-let's-just-call-millions-of-sick-people-idiots-thing. GIVE ME THE PILLS, NOW!
But my friends say it might be a bit too che guevara for this day and age and shouldn't I just be happy my symptoms are gone. I really feel I need more antibiotics than like 35 days. I had 2 weeks when I had had Lyme for a year and it came back far more evil than before. I want this thing killed even if I have to throw up for a year.
What to do about my GP? What can I show her to prove LOTS of people have taken long term antibiotics for Lyme (and got better)? That 2-3 months is actually not THAT much considering I've had Lyme's disease for 6 years now? What if she says you look fine now (I do)? I can't have another 6 month good period then to have all the pain and stuff all come back again. I can't do it, I just can't, it has to stop and it has to stop NOW.
*smashes head into brick wall again* You know, my GP once told me Lyme is just something patients have to get used to. I'm wondering if I'll ever get used to this, instead. *smashes head into wall once more, just to make a point*
Posts: 185 | From the Netherlands | Registered: Mar 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
yeah, the absurdity and futility with this disease is sometimes overwhelming...head into wall
Can you go to the german guy exclusively? If so I would just outright fire your gp...
You might want to bring up Columbia University studies done by Dr Fallon as a counterpoint to your GP's lack of knowledge of ongoing use of antibiotics...
.good luck.........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
thanks zman do you maybe know a link to that article?
I can't go to the german doctor I'm afraid, he just interprets the Lyme tests at that lab but is too old to treat patients and prescribe ABX, so I have to get them through my GP....
Posts: 185 | From the Netherlands | Registered: Mar 2005
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I've decided to not take ANY information about Lyme to the appointment. And I won't talk to my GP about how my symptoms are now (gone, that is). She made it perfectly clear she didn't believe me and wouldn't want to hear about it the last time I saw her.
This time the only thing I will do is take the pharmacy's piece of paper that says I only got 2 months. I will then keep reminding my GP I would get 3, and that doctors always say you should finish your treatments, and that SHE didn't even precribe the 3 months anyway, untill she gives in.
It worked the last time and it will have to work again. I will bring a male friend, as I did last time, and will not get off my seat unless it's with a recipe or kicking & screaming. Sigh. Guess I'm just trying to get myself to feel as strong and self-confident as I did last time. I'm just so scared.
I thought of this month as a formality, a nasty bit I had to finish up before starting again Lyme-free. I couldn't believe how much better I felt. The only bad days I've had since where when my grandmother died, all the others were so great, I've been so happy these past few weeks... And now this stupid COW is trying to ruin it for me. WHY? If I'd just collected the pills without taking them she wouldn't even have NOTICED! Some people are just SO STUPID!
*goes to slam doors and punch pillows, while still able*
Posts: 185 | From the Netherlands | Registered: Mar 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
quote:Originally posted by dafje: Assistent explained that my taking antibiotics for longer than two weeks for Lyme is a first in medical history
Boy, is THAT ridiculous!!!!
Take the male friend [for sure] and the printed out info from the links given just as a back-up. Don't give it to her until you WIN! Hand it to her as you leave. If you're DONE WITH HER tell her to get educated!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Southampton Lyre
Unregistered
posted
quote:Originally posted by dafje: What to do about my GP?
Show your GP this, and explain it comes from the website of the National Institutes of Health (NIH), the main public health body in the United States:
Then ask her, "Doctor, if Lyme is so easily cured that no one ever needs more than a couple weeks of antibiotics, why is the US army studying it in high-security labs as a potential bioweapon??!!!
Here's the relevant quote:
"Are NIAID scientists already studying potential agents of bioterrorism?
Even before the current emphasis on biodefense, NIAID scientists had been studying organisms that cause a variety of infectious diseases. Potentially, some of these microbes also could be used as agents of bioterrorism. Examples of diseases caused by these agents include plague, Lyme disease, rabies, tick-borne encephalitis, West Nile virus disease, influenza, anthrax infection, Ebola virus hemorrhagic fever, HIV, tuberculosis, transmissible spongiform encephalopathies, and Q fever. All of this work has been carried out in either the Maryland or Montana laboratories with required safety measures in place."
Also show her this article by ILADS doctors in the Lancet; it's short enough for her to bother to read and it gets right to the point:
"The Lancet 2005; 366:1771 DOI:10.1016/S0140-6736(05)67721-5 Lyme disease: scratching the surface Steven E Phillips, Nick S Harris, Richard Horowitz, Lorraine Johnson and Raphael B Stricker email address The excellent Comment by Ulrike Munderloh and Timothy Kurtti (Sept 17, p 962)1 describes the complex life cycle of Borrelia burgdorferi, the spirochaetal agent of Lyme disease, as it traffics between tick and mammalian hosts. The Comment highlights a growing problem with Lyme disease: while what is known about the basic science of this tick-borne illness becomes more complex, the clinical science remains relatively simplistic and uninformed.2 This divergence has produced a disconnection between the recognition of B burgdorferi as one of the most invasive and elusive bacteria known to man, and the clinical perception that Lyme disease is "hard to catch and easy to cure". The complexity of the Lyme disease spirochaete goes beyond the features described by Munderloh and Kurtti. With more than 1500 gene sequences, B burgdorferi contains at least 132 functioning genes; by comparison, the spirochaetal agent of syphilis, Treponema pallidum, contains only 22 such genes.2 Furthermore, the Lyme disease spirochaete contains 21 plasmids (nine circular and 12 linear).2 This is by far the largest number of plasmids found in any known bacterium, and the large number of plasmid genes is thought to provide a rapid response system that allows the spirochaete to cycle efficiently between ticks and mammals.3 Gene exchange and plasmid transfers among Borrelia strains can also increase the pathogenicity of the organism.3 In the mammalian milieu, B burgdorferi uses the host fibrinolytic system to penetrate the blood-brain barrier and gain access to the central nervous system. The Lyme disease spirochaete contains a secretory mechanism for porin, adhesin, and haemolysin proteins, and these secreted products can contribute to the invasive properties of the organism.4 The spirochaete can enter cells such as fibroblasts, synovial cells, endothelial cells, and macrophages. In these cells, it becomes functionally resistant to treatment, partly due to "camouflage" proteins produced by itself or adsorbed from the cell, and partly due to altered morphology as the spirochaete assumes a non-replicating cyst form.2 The immune evasion strategy used by B burgdorferi is similar to strategies used by the mycobacterial agents that cause chronic infections such as tuberculosis or leprosy.2 These organisms also exist as non-replicating cyst forms that can be "resuscitated" by autocrine cytokine-like factors after lying dormant for months. B burgdorferi has been shown to use luxS, an autoinducer gene used by other bacteria, to regulate replication.5 It is the first time that this autoinducer gene has been identified in a spirochaete. Thus the combination of genetic complexity, intracellular localisation, immune evasion, and autoregulation makes the Lyme disease spirochaete a formidable infectious agent.2 By contrast with the complex basic science of B burgdorferi outlined above, a popular clinical notion is that Lyme disease can be cured with 2-4 weeks of antibiotics. Although this might be true of promptly treated acute B burgdorferi infection, chronic infection that allows the spirochaete's complex pathophysiological mechanisms to unfold can result in tenacious tissue invasion that is extremely difficult to eradicate. Understanding the pathophysiological complexity of this organism should help to improve our clinical approach to Lyme disease.2 We declare that we have no conflict of interest. References 1. Munderloh UG, Kurtti TJ. The ABCs of Lyme disease spirochaetes in ticks. Lancet 2005; 366: 962-964. Full Text | PDF (41 KB) | CrossRef 2. Stricker RB, Lautin A, Burrascano JJ. Lyme disease: point/counterpoint. Expert Rev Anti Infect Ther 2005; 3: 155-165. 3. Qiu WG, Schutzer SE, Bruno JF, et al. Genetic exchange and plasmid transfers in Borrelia burgdorferi sensu stricto revealed by three-way genome comparisons and multilocus sequence typing. Proc Natl Acad Sci USA 2004; 101: 14150-14155. MEDLINE | CrossRef 4. Cluss RG, Silverman DA, Stafford TR. Extracellular secretion of the Borrelia burgdorferi Oms28 porin and Bgp, a glycosaminoglycan binding protein. Infect Immun 2004; 72: 6279-6286. MEDLINE | CrossRef 5. Stevenson B, von Lackum K, Wattier RL, McAlister JD, Miller JC, Babb K. Quorum sensing by the Lyme disease spirochete. Microbes Infect 2003; 5: 991-997. MEDLINE | CrossRef Back to top Affiliations International Lyme and Associated Diseases Society, PO Box 341461, Bethesda, MD 20827, USA "
I went in there today and kicked some serious BUTT I have a new prescription and start taking abx tomorrow!
Posts: 185 | From the Netherlands | Registered: Mar 2005
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do you maybe know a link to that article?![[rant]](graemlins/rant.gif)
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