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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
 Posted - 09/17/2003 : 12:07:50
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I have lyme disease..before it was thought that it could only be transfered from the black legged deer tick to human. But now it seems that it can very well be transfered through sex, blood, and pregnancy. (Also breastfeeding, in fact, it's proven that through breast milk the spyrochetes can be transfered) This sucks...I want to have kids when I get older but I don't want them to have Lyme..believe me, it sucks ass. Also since whoever my wife is going to be will probably get it, too. God damnit...Very discouraging. And no, I can't be healed. I can be somewhat treated, but not healed. If you catch lyme in it's early stages (first couple of weeks) it can be cured with antibiotics easily. But the doctors are fucktards and diagnosed me with lyme 2 years after I got it. Now I have chronic lyme disease and as of now it can not be cured. skaljfs;jfsa fuck doctors. They are beaurocrats. jdsklafjs
okay...sorry for venting...
- Nathan
I don't trust anything that bleeds for five days and doesn't die. |
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glacial906
* Dog in the Sand *
USA
1738 Posts |
Posted - 09/17/2003 : 12:11:55
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What is Lyme disease, specifically? I've heard of it before.
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Edited by - glacial906 on 09/17/2003 12:12:16 |
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El Barto
= Song DB Master =
USA
4020 Posts |
Posted - 09/17/2003 : 12:13:18
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Sorry to hear that...please, educate us on what it is exactly. I've also heard about it, but don't know all that it entails.
 "I joined the Cult of Frank / Did anyone else have to give up their first born?" |
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glacial906
* Dog in the Sand *
USA
1738 Posts |
Posted - 09/17/2003 : 12:16:07
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Excluding any nasty details.
Not making light of your post.
"...you can see here by my grin I don't give a fuck..." |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/17/2003 : 12:22:08
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Well...you get it from lyme infected black legged deer ticks. 40% of the cases will get a ring-rash around the bite. (So if you're out in the woods and get bitten by a tick, please go see a doctor just in case...may seem stupid, but just do it for your own good.) The bacteria that is lyme (Borrelia burgdorferi) is about 2000 times larger than a regular virus. In-fact, if you were to line 1000 of the little things in a row it would be an inch. Pretty gross. Okay, so they are spirochetes:
As you can see...they're little spiral thingies. Now they corkscrew to move around your body. They actually penetrate tissue much easier than they do the blood stream. So they burrow through your tissue, physically damaging it by the burrowing motion and also biochemically changing it. They will penetrate a cell, split, and then leave, killing the cell immediately. They travel around the bloodstream in a cluster, making it harder for the immune system to kill them. They will then lodge themselves into major organs (brain, heart, joints, muscles, etc.) and cause plenty of damage. They attack your immune system the same way syphlis does (syphlis is actually a spyrochete, too). Let's see...the symptoms are different for everyone. The most common are arthritis, depression, and flu like symptoms. I have arthritis, seizures, bipolar-II, stomach ulcers, and numerous other things. If detected immediatly, you can get rid of all of them easily with one or two weeks of really strong antibiotics. If your doctors suck like mine and don't detect it until like 3 months + you're screwed. You can't be cured. You're stuck with lyme for the rest of your life. It's a very controversial disease...seeing as the government hardly pays for any research. Most people don't even believe it exists. My school is threatening to sue me because they don't think I'm truly sick. Fuck them.
I don't trust anything that bleeds for five days and doesn't die. |
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glacial906
* Dog in the Sand *
USA
1738 Posts |
Posted - 09/17/2003 : 12:24:04
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That's awful, I am very sorry to hear about that.
Why can't you provide the school with actual medical documentation that you are indeed sick?
"...you can see here by my grin I don't give a fuck..." |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/17/2003 : 12:28:56
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I have. I have actual pictures of my blood where there is a dye on the lyme bacteria. The school is still fighting us. Yeah, it sucks...
But oh well, don't worry about me, I'm kinda improving. I'm just glad that I've been able to educate you on it...hopefully sparing you people the horror known as lyme, haha, ooh, another interesting tidbit: It's called lyme disease because it was first diagnosed in Lyme, Connecticut. Like 17 childres got it, bit epidemic, pretty crazy. But yeah..that was just in the 1970's, so it hasn't been known about for very long.
I don't trust anything that bleeds for five days and doesn't die. |
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Cult_Of_Frank
= Black Noise Maker =
Canada
11687 Posts |
Posted - 09/17/2003 : 12:31:01
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Very sorry to hear that Crouton... I was also under the impression that it could only be transmitted by deer ticks. Sometimes I think I should give blood on a monthly basis because at least THEY screen for everything carefully (lest they get sued again). But seeing a syringe in my arm filling with blood wouldn't be very conducive to me retaining consciousness.
 "Join the Cult of Frank / And you'll be enlightened" |
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glacial906
* Dog in the Sand *
USA
1738 Posts |
Posted - 09/17/2003 : 12:31:26
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I have been lucky. All I've ever had was nefrosis, a kidney disease, when I was a kid. They did something, I don't remember what, a kidney dialysis or something, and I got rid of it.
"...you can see here by my grin I don't give a fuck..." |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/17/2003 : 12:32:29
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Actually, the normal blood test that they do for lyme sucks. I was negative for lyme with that test. The most precise test is where they dye the lyme antibodies, the antibodies will then go to the lyme (if there is lyme present in the system). they then put it under a light and if it lights up, then yay (kinda), you have lyme!
I don't trust anything that bleeds for five days and doesn't die. |
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glacial906
* Dog in the Sand *
USA
1738 Posts |
Posted - 09/17/2003 : 12:40:54
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So do you have to take medication for the rest of your life, or what..? What does the treatment entail?
"...you can see here by my grin I don't give a fuck..." |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/17/2003 : 12:45:17
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Yup, treatment until I die (unless they come up with a solution...I hope they do)
Well...tons of antibiotics and plenty of suppliments to keep my immune system stable. The bacteria actually has three forms that it likes to change into to hide from the immune system and antibiotics: spyrochete: this is the stage that it multiplies in. spheroplast (also known as L-Form): this is the cluster that it travels in, more protection against immune system, and last but not least: cyst: this is how it lodges into organs and joints, it's impossible for the immune system to get to it this way.
There was some research done with a new suppliment recently that shows dramatic improvement...so I'm really looking forward to trying it.
I don't trust anything that bleeds for five days and doesn't die. |
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Dave Noisy
Minister of Chaos
Canada
4496 Posts |
Posted - 09/17/2003 : 12:58:15
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Wow..really sorry about that, must be very difficult and frustrating.
Have you consulted any naturopaths or other holistic practitioners? Antibiotics are pretty hard on your system, perhaps there's something better you can take? (Or maybe some sort of cure, but i don't know anything about this..) |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/17/2003 : 13:01:02
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Well...there used to be a "Cure". It ended up killing quite a bit of people, though...so they took it off of the market for obvious reasons. Yeah...antibiotics are really hard on the system. The doctor I have actually has lyme disease, so he knows what's best for me. So I trust him to take care of me the best. Thanks though!
I don't trust anything that bleeds for five days and doesn't die. |
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/19/2003 : 10:04:07
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I'm so sorry Crouton - I hope that they will increase the research and funding to get a cure soon. I'm so glad (though it is a mixed blessing of course) that you found a doctor that has a vested interest in your condition.
I know what it is like to deal with incompetent doctors, and there really is no denying that there are plenty out there. I wouldn't have bothered you, as you may not be interested in talking about this anymore after you let off steam, but my husband has had the mother of all headaches for 2 1/2 months nonstop (not a migraine), and about a month ago (after inconclusive CAT scans and a spinal tap! - he had an MRI about 1 month ago) our GP did a Lyme test and it came up with "9 bands in spectroscopic tested negative, 1 positive". She said it was probably worth testing again, but his next doctor said it was perfectly normal. As does his new Neurologist. It sounds to me however, that we may need to insist he be retested? Not looking for medical advice, of course! But I am curious as to what you may have seen as far as the range of testing that is out there.
Best wishes to you. |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/20/2003 : 11:33:36
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Ah, yes. Migraines.Headaches. You should definitely retest him for lyme. (sorry this response took so long, by the way, hehe, oh, and spinal taps are no fun...I'm sorry it was for nothing.) I'm sure you'll find out what it is. Also, has he been bit by a tick at all? Ever? hehe, because lyme can remain dormant in the system and then strike when the immune system is down from another illness. Goodluck!
I don't trust anything that bleeds for five days and doesn't die. |
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BLT
> Teenager of the Year <
South Sandwich Islands
4204 Posts |
Posted - 09/20/2003 : 12:10:32
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The question is whether you want to resign yourself to relying on the medicos to "find a cure," or whether you are willing to look for another way. I'm not trying to say your MD is trying to hoodwink you in some way, but I've found most MDs to be pretty limited by what they were taught in school. What I'm trying to say is that western medicine leaves a lot to be desired. In the past year I've gone through some strange neurological symptoms. I even got tested for Lyme (I was bit by a western black-legged tick a couple years ago) but fortunately the results were negative. Turns out my symptoms were from mineral deficiencies, even though the blood tests suggested everything was within range. In my opinion, no matter what disease you have, it's foolish to sit back and wait for a cure to be found. We all want a magic pill to swallow when we're sick, but it's seldom that easy. Even people with incurable diseases like MS have found relief through changes in diet and "alternative medicine" after their neurologists told them all they could do was prescribe drugs to make their lives more tolerable while they wait to be confined to a wheelchair. I've read of people being cured of Lyme using extremely concentrated garlic (which has its own antibiotic properties). If this all sounds foolish to you then maybe you'll consider it when things get worse. I'm not talking about some new age crap here, but I believe you have control of your own future. Good luck with it.
 "The Cult of Raymond" |
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/20/2003 : 12:48:52
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Thanks very much, Crouton - I will definitely make a point to remind him to get retested for Lyme. He and I are both in a position to have been bitten by ticks on many occasions - he grew up in the country (Southeast KY) and we have always been nature lovers, ie. camping, hiking, etc., so there is no doubt he may have been exposed to the virus at some point. Do you happen to know what the spectroscopic tests consist of? Do you remember what number of bands need to return as positive for suspicion to be raised? Are unusual headaches a common symptom?
He is going to get a new MRI in a week because of an area of interest that may just turn out to be "camera jitter", but he will also be going to an acupuncture clinic for needle and moxabustion (sp?). I have been trying to convince him to meditate AND quit smoking, but I realize that is a very tall order, especially with an almost 3-month-long headache to contend with. I agree with you, BLT, that it is almost always worthwhile to explore the alternative options (which I consider a misnomer, as it seems it should be the first response to anything but the more serious cases). The mainstream medical/pharmaceutical industry is frequently dangerously myopic in diagnosis and trigger-happy with double-edged drugs, which usually do nothing more than increase your risk for being unwell. Whew, out of breath!
Before we moved recently, we had a very well-stocked apothecary and we self-treated (except in any event of extreme infection or need for surgery for a torn ACL) with herbs and homemade teas rather than a trip to the doc and the requisite bottle of antibiotics. It worked pretty well, we think, but I believe it is best to try both the doctor route -and- the alternative, holistic route when dealing with a serious illness. Can't hurt (insert disclaimer - usually!).
Again, I wish you the best. |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/20/2003 : 13:02:07
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yeah, I know what you mean BLT. I'm on "alternative treatments" too. Silver protein seems to help me a little. I'm also on tons of suppliments to help out. As I said, my doctor has lyme, too. He doesn't give into the crap that they try to tell him. I trust him to look into different medicines, and he has. I just ordered something called "Samento". :
Control Group: No patients improved and some worsened; all patients continued to be seropositive for Lyme borreliosis at end of study
Experimental Group: 100% of patients experienced marked clinical improvement; 85% were seronegative for Lyme borreliosis at end of study
So, yeah, I'm looking forward to it.
Here's something from a website that describes the different tests:
Clinical diagnosis
No matter what testing a doctor performs, he should depend on a clinical diagnosis, supported by testing and re testing if needed. The medical care provider should examine the patient's history, signs and symptoms, genetic tendencies, metabolic profile, immune system related dysfunctions, systemic infection, duration of antibiotic treatment if any, nutritional status, psychological disposition, spiritual leanings, physical activity, family related factors, job related stress, job and home surroundings, financial problems, addictive behavior etc.
Laboratory Testing
Because chronic fatigue syndrome and fibromyalgia (along with some other conditions) cannot be clearly distinguished from chronic Lyme disease, laboratory testing is required. Indeed, accumulating evidence suggests that Lyme disease may be a frequent cause of fibromyalgia, chronic fatigue and even ALS. Most testing includes serology and possible PCR.
Routine laboratory tests are usually normal in Lyme disease. Currently available tests are the serologic tests such as the enzyme-linked immunosorbent assay (ELISA) and Western blot assays for antibodies to the spirochete. However, ELISA has been shown to be unreliable in many Lyme patients with both early and late disease. Over 75% of patients with chronic LD are negative by ELISA while positive by Western Blot.
Initially, and in early disease, the IgM (immunogloblin M) Western blot test becomes positive. Later, the IgG (immunogloblin G) Western blot test becomes positive and may persist for an indefinite period of time. If the Borrelial organisms become or remain intra-cellular (inside the cell) both the IgM and IgG Western blot tests may be negative. In fact, 20% of all patients with known LD have negative ELISA and Western blot tests.
PCR (Polymerase Chain Reaction) is a highly sensitive test to detect microbial DNA or RNA. However, despite the specificity of this method, Borrelial DNA or RNA has not been reliably detected in blood, urine, or spinal fluid of LD patients. Such findings again are supportive of an intra-cellular reservoir for the LD spirochete.
ELISA and Western blot testing is recommended for all patients. PCR tests are optional and can be performed on certain selected patients who exhibit active lesions. The Western blot assay remains the most reliable immonlogic test.
Examining the blood under dark field microscopy may be of help. Not finding a spirochete doesn't always mean that the patient does not have Lyme disease. There are doctors who use electro dermal screening. Many traditional doctors do not believe in this modality of diagnosis. I use it rarely and do not depend on it to pinpoint the diagnosis. Dr. Burrascano has developed a weighted list of diagnostic criteria and an exhaustive symptom checklist to diagnose LD.
In pediatric screening especially, Dr. Jones, looks for sudden, sometimes subtle, changes in behavior, cognitive function such as losing skills or losing the ability to learn new material; not wanting to play or go outside; running low grade fever; sensitive to light or noise. Painful joint and swollen joints will point to an existing inflammatory or infectious process. One of the important symptoms of the LD is fatigue unrelieved by rest.
For women, Dr. Barkley has found that testing around the time of menses increases the probability of discovering the presence of Bb. Women with Lyme have an exacerbation of their symptoms around menses. The decline of estrogen and progesterone at the end of the menstrual cycle is the explanation given for the worsening of the patient's LD symptoms.
In some patients diagnosed with Lyme borreliosis, the classical antibody response is slow or never develops( Harris et al, journal of Spirochetal and Tick Borne Diseases, V2, N2, 1995))
FDA Approved Lyme disease Tests:
The enzyme-linked immunoassay (ELISA) is routinely performed as the first step in confirming a clinical (symptom-based) Lyme disease diagnosis. The ELISA screens antibodies produced in response to Borrelia burgdorferi bacteria and should be performed at least four weeks after a tick bite. About 5% to 7% of those unexposed to the disease will also test positive. The ELISA is therefore meant to provide only preliminary screening, and all positive results must be confirmed by a second test, the Western Blot.
The more accurate Western blot specifies which Lyme-associated antibodies are present in the bloodstream, and is routinely used to confirm, or in some cases contradict, positive ELISA results. A positive ELISA followed by a negative Western blot usually indicates that Lyme disease is not present. Although the Western blot is not fool proof and should not be used to diagnose Lyme disease without accompanying symptomologic evidence. Traditional MD's considers the ELISA -Western blot combination with symptoms the most reliable method of diagnosis.
The polymerase chain reaction (PCR)
This test is a sensitive assay that detects the DNA of B. burgdorferi. However, certain limitations prevent the PCR from being widely used. First, B. burgdorferi bacteria do not persist in easily obtainable fluids such as blood, synovial (joint) fluid or spinal fluid. It typically binds to joint and nerve tissues. A PCR done on spinal fluid may be positive in early neurologic disease (e.g., Lyme meningitis) but is usually negative in a patient with long-term central nervous system damage. Second, a PCR can be easily contaminated, producing false positive results. For this reason, a positive PCR in a patient whose standard blood tests (ELISA and Western blot) are negative must be viewed carefully.
The polymerase chain reaction (PCR), detect extremely small quantities of the genetic material of the Lyme disease bacterium in body tissues and fluids. It is expensive and available now. A negative Polymerase Chain reaction for Bb after therapy indicates clearing of the infectious agent.
A bacterial protein, outer surface protein C (Osp) C, is proving useful for the early detection of specific antibodies in people with Lyme disease is under development.
Prevue B
This is a Lyme antibody detection assay that provides visually read color results using serum or whole blood samples. This test can be performed in the physician's office and results obtained within an hour. The advertised advantage to this test is that treatment can potentially begin sooner. However, as a screening tool, Prevue B can only be used in lieu of the ELISA, and a positive result may still be confirmed by a laboratory-performed Western blot.
I don't trust anything that bleeds for five days and doesn't die. |
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/20/2003 : 20:31:32
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Wow! Thank you so much, Crouton - it's really kind of you to post all that info. Lots to digest in that, but it will really help in preparation for that next doctor's visit. Good to know that there is a possible route for you with this "Samento". Best of luck to you, with the treatment AND the school!
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/20/2003 : 20:33:32
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| Huh, I just noticed that you are from Ohio - we are in Columbus! Did you happen to catch that FB & TC show at Little Brothers this summer? |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/20/2003 : 20:37:47
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hehe, nope, I wish I could have, but I was busy that day. Ohio sucks, doesn't it? haha
I don't trust anything that bleeds for five days and doesn't die. |
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/20/2003 : 21:31:06
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You betcha! Just been here a little over a year - husband got a new job and we had to relocate from Chicago. Boy, if that ain't culture shock, I don't know what is.
Little Brothers has consistently booked some really great bands, but due to extenuating circumstances, that show was the only one we've been able to see so far. I've been a fan since around 89, and I introduced FB and the Pixies to my husband years ago - we are both huge fans now. It was our first FB concert and it blew us away as we expected. Those guys create quite a force standin up there on the stage like their guitars are big guns. Really tight! Only downside were two obnoxious drunk girls who kept making a scene with some guys, jumping and dancing into people and trying to audition for "girls gone wild". They seemed to manage to always be in our way - and everyone else's. At one point, one of them was drinking her beer and was leaning back really far - well, the singer for the Bennie's was on the floor in his wheelchair next to us during FB's show - she leaned real far back and bumped into him, got startled and jumped and yelled really loud, spilling beer all over herself! heheh. That just about made up for all of the misery of their company we had all endured. Lovering's phenomenalist show was a hoot, too. |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/20/2003 : 21:34:19
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haha, that rocks. Strange, though, I was born in Illinois (libertyville) and have been to Chicago several times...yeah...huge culture shock...I live in ashland, ohio (about an hour and 15 minutes north of you).
I don't trust anything that bleeds for five days and doesn't die. |
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/20/2003 : 23:21:39
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Yeah, kinda weird. So... sorry, but what's in ashland, ohio?
"When your back's against the wall it's time to turn round and fight." - John Major |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/20/2003 : 23:24:27
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ABSOLUTELY NOOOOTHING!! (hehe, UHF) Well...there's Wal-Mart!! And umm...Well, there's Ashland University, haha. But yeah, Wal-Mart is the highlight of this town.
I don't trust anything that bleeds for five days and doesn't die. |
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/20/2003 : 23:32:39
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GREAT movie! And, yeah, I used to live in a town like that, in college. Big hubbub when it supernova'd into a SUPER Walmart!
"When your back's against the wall it's time to turn round and fight." - John Major |
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TheCroutonFuton
- Mr. Setlists -
USA
1728 Posts |
Posted - 09/20/2003 : 23:33:42
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SUPER WALMART?!?!!? I WANT ONE! hehe
hmm...do you happen to have AIM or any messenger service? I'm bored as heck right now...and yeah, haha
I don't trust anything that bleeds for five days and doesn't die. |
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/20/2003 : 23:46:01
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Poop. I was just about to mosey on to bed, when I thought to check this thread once more - hopefully my hubby's guitar-playin antics won't be goin on for much longer, cause I'm having trouble keeping my eyes open right now....
I do have aim, and msn msngr, I will try putting one or both in my profile next time I check in. Sorry about that boredom - that's a deadly monster. I generally try doing some heavy staring at nothing in particular until my brain lands on something sticky and I get distracted. I don't know how helpful that is, but it's free intellectual property, like free "as in beer" free. what the hell am i going on about? sorry. G'night!
"When your back's against the wall it's time to turn round and fight." - John Major |
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Brackish Girl
~ Soul Eater ~
Ireland
1750 Posts |
Posted - 09/24/2003 : 13:36:59
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its only when you hear about the crap some people have to go through that you're truly thankful for any health you have.*way to go and bring down the some people, jess*
"In the Cult of Frank/i will eat you soul...heh." |
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/24/2003 : 14:54:57
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Hey, ya didn't bring -me- down! (I don't wanna speak for Crouton). The way I (and my husband) see it, as long as you're still here, you've got your health, and something to be thankful for.
Except maybe if you are without legs, arms, sight, hearing, and speech. That would be rather unworkable for me. I would have to be a really sleepy, narcoleptic lucid dreamer. And have lots of drugs. Yeah, lots and lots of drugs.....
"Toynbee ideas in Kubrick's 2001 resurrect dead on planet Jupiter"
-Unknown |
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apl4eris
~ Abstract Brain ~
USA
4800 Posts |
Posted - 09/25/2003 : 14:41:29
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Hey, Crouton, I was just wondering how you are as of late, and if you had tried that new treatment yet? Haven't heard from ya in a while. :)
Today the acupuncturist told my husband that he has "two blocked miridians". Despite how it may sound, this guy seems really alright - we'll see I guess. He won't be getting acu-treatment until this Saturday. Still haven't heard back about the blood tests, yet. Sorry if I am boring you w/all this nonsense!
"Toynbee ideas in Kubrick's 2001 resurrect dead on planet Jupiter"
-Unknown |
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