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Old 10-09-2007, 11:21 AM #1
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Quote:
Lyme is curable isn't it?
It seems to be a fairly controversial topic, so I'll go off of what I've read that's most reputable. From what I gather, if caught in the most early stages and treated immediately, it's curable. What I've been reading (only on page 22 out of 188), this doctor suggests doing repeat CD 57 tests as well as something else and documenting changes (the treating provider does this). If the numbers don't do the right thing (go up or down, I forgot, hehe) - it gives them a better idea of if the patient will 'relapse' or not. They seem to talk about it like it were cancer in a way, as in you have it and it goes into a remission of sorts and in some cases (it hints more towards long term infections ("chronic lyme") and things of the like) there's changes of a relapse.

They seem to prefer to call it treatable instead of curable.

Here's some clips from Tom Grier's writings, these are from studies (link to full article below)

Quote:
At the 1993 LDF Conference, a study was presented by Dr. Daniel Cameron, MD. In his study of more than 40 nursing home patients, he found that the relapse rate for IV Rocephin for four weeks was 25%, but the relapse rate for doxycycline was 87%. The difference in this study was that the follow up was 13 months not three months.
Quote:
In a six year, ongoing study using the population of Nantucket Island, there was an interesting statistic that occurred involving the use of IV Rocephin. Since the entire population of 5000+ on the island went to only four doctors, it was easy to do long term followups on patients who were treated for Lyme disease. What was found was IV Rocephin had the highest rate of relapse, unless followed up for several moths with oral antibiotics. This was because the short duration of four weeks of treatment was inadequate to prevent relapse. This was why 57% of these patients had documentable relapses.
Quote:
At the 1997 LDF conference, a study was presented using naïve beagles as subjects. In this study, three groups of six beagles were studied. One group of six was infected; using infected ticks, and treated with four weeks of amoxicillin. Another group was infected and treated with a double dose of doxycycline for four weeks.

The third group was the control. In the doxycycline treated group, at three months post-treatment, it appeared that 100% were cured. But, at two years at autopsy, five of the six (5/6) beagles were shown to have active infection, or complete relapse.
This is what was most interesting to me:
Quote:
A more basic study showing the inadequacy of doxycycline goes back to 1989, in an abstract from Austria. Here, the researcher incubated a live culture of Borrelia burgdorferi with doxycycline for two weeks. The culture appeared to be dead, as both motility and reproduction had ceased. The culture did not have the appearance, however, of the amoxicillin treated culture, which was filled with Lysed cells. So, using micropore filters, the researcher filtered doxycycline treated cultures, and separated the intact Borrelia from the supernatant. He then washed them, and placed the filtrate back into fresh culture media. Over two thirds of the cultures reactivated, becoming motile and beginning to reproduce. It appeared that doxycycline immobilized the bacteria by interrupting protein syntheses and metabolism. This pushed the cells into a non-metabolic state. Since the doubling rate is often used as a means of determining if the cells are alive, it was assumed that the cultures were dead, when they were in fact just dormant.
Link to full article here: http://www.canlyme.com/tom.html

(Most of it is easy to read, by the way. He's kind enough to not throw huge medical words around, lol)

So I really don't know if it's curable, but I don't think 'they' know either! In my opinion, it's all based off of the individual and I'm sure the strength of your immune system comes into play.

In my case, they think it was a reinfection or long-term infection even though I displayed the EM rash in July after going back home to visit. Kind of funny I grew up there picking ticks off of me and move to California and go home and my first day back I get bit! They've found my symptoms to be too progressive for early treatment, either that or my immune system is too pathetic to handle anything. It only took 4 weeks for chronic joint swelling (I mean it's gross they get so big), muscle pain and cramps, etc. Unfortunately it seems to have bullied the neurological side of things that was already not the greatest in the first place.

In a way, it's humbling. I am almost ashamed for what I complained about before because waking up afraid of my day is the worst experience ever. I've found having a schedule is the best way to do it. I know I have until around 3:00pm before what they call "midday fatigue" kicks in. I have until 6:00pm until my feet and knees swell up. I've turned into a morning person, and I totally hate mornings. The only perk of the morning is my coffee smells AMAZING when I first make a pot!!!


I might get the IV antibiotics next week. It's gross but I'm actually excited, I am so sick of taking pills I'd prefer to have a 'tap' put in my arm.
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Old 10-09-2007, 11:40 AM #2
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Ellie, nice to see you again!

I was reading up on Lyme and MS quite some time ago, and came across this:

Med Hypotheses. 2005;64(3):438-48.

Chronic Lyme borreliosis at the root of multiple sclerosis--is a cure with antibiotics attainable?

Fritzsche M.

Clinic for Internal and Geographical Medicine, Soodstrasse 13, 8134 Adliswil, Switzerland. Contact Markus Fritzsche

Apart from its devastating impact on individuals and their families, multiple sclerosis (MS) creates a huge economic burden for society by mainly afflicting young adults in their most productive years. Although effective strategies for symptom management and disease modifying therapies have evolved, there exists no curative treatment yet. Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks. In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable. As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted. The immunomodulating anti-inflammatory potential of minocycline and hydroxychloroquine may furthermore reduce the Jarisch Herxheimer reaction triggered by decaying Borrelia at treatment initiation. Even in those cases unrelated to B. burgdorferi, minocycline is known for its beneficial effect on several factors considered to be detrimental in MS. Patients receiving a combination of these pharmaceuticals are thus expected to be cured or to have a longer period of remission compared to untreated controls. Although the goal of this rational, cost-effective and potentially curative treatment seems simple enough, the importance of a scientifically sound approach cannot be overemphasised. A randomised, prospective, double blinded trial is necessary in patients from B. burgdorferi endemic areas with established MS and/or Borrelia L-forms in their cerebrospinal fluid, and to yield reasonable significance within due time, the groups must be large enough and preferably taken together in a multi-centre study.

http://www.canlyme.com/multiple_scle...ypothesis.html

However, what I also came across was this article:

IS LYME DISEASE PRESENT IN CANADA?

Lyme disease is not common in Canada. Although it is not a reportable disease in most provinces, less than 30 cases are reported each year (3). In Canada, Lyme disease can be acquired in areas where the tick vector is well established. More than half of the cases of Lyme disease from these areas, and virtually all of the cases from nonendemic areas, can be linked epidemiologically to travel to a highly endemic area of the United States.

WHERE ARE THE TICKS THAT TRANSMIT LYME DISEASE LOCATED IN CANADA?

Not all ticks can transmit Lyme disease. The common dog tick (Dermacentor variabilis) is not a capable vector for the Lyme disease spirochete. Only the deer tick (I scapularis and I pacificus) is involved in the life cycle of B burgdorferi, and it transmits the disease. Although I scapularis has been found in all provinces from Saskatchewan to the east, and I scapularis was demonstrated to be carrying B burgdorferi in some of these ticks, most ticks have been adult females most likely brought to Canada on migratory birds and have not undergone their full life cycle in Canada (4-7). In fact, I scapularis is established (having larva, nymph and adult stages present) only in the Long Point peninsula and Point Pelee National Park, both on Lake Erie in Ontario, whereas I pacificus undergoes its full reproductive cycle in Canada only in the Fraser River delta, the Gulf Islands and Vancouver Island of British Columbia (8).

(That was reported on this link, but you can't get to it any more: http://www.pulsus.com/journals/index.jsp ) This link says basically the same thing, that Lyme is very rare in Canada: http://www.phac-aspc.gc.ca/publicat/...6sup/acs3.html

Canada, especially the mid-western Provinces, has one of the highest prevalence of MS in the World . . . but VERY little Lyme. The US has a higher incidence of Lyme, but seemingly lower prevalence of MS.

Having said all that, I don't think I was ever tested for Lyme.

Cherie
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Old 10-09-2007, 11:59 AM #3
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Thats very interesting, thanks! Nice to see you, too. With my up-and-down health I decided to take a small break from everything for a while. Thankfully my new glasses show up in 2 weeks so I can enjoy learning more without the associated headaches and word chasing. Yay!

Regarding the Lyme test(s), it's kind of a waste of money in my opinion. I consider myself lucky to have had the rash, because if I didn't I'd rely on a test where I'd literally have more luck flipping a coin and guessing which side. Looking at the studies which show accuracy (actually, it shows more inaccuracy than anything), it's really sad to see that tons of people will be misdiagnosed or even worse, not diagnosed at all because the tests are yet to evolve into a more accurate reliable source of diagnosis means.

I'd actually seen this one article that cited a study that shows the CDC (that year) had the most inaccurate results of all. Which is kind of scary. For the most part, they seem to use those results ("CDC Positive") for statistical and reporting purposes, but when they are so inaccurate it's really hard to rely on them to give real true numbers.

From the article I linked previously, here's a clip.

Quote:
We are told by manufacturers, health departments, and clinics that the Lyme ELISA tests are good and that they are useful, but in two blinded studies that tested laboratories accuracy, they failed miserably. In the latest study, 516 labs were tested. The overall result: 55% inaccurate!
There's tons of studies to compare how accurate/inaccurate the various tests are. I've had a few rounds of tests, but I always get sick first. The last time my lymph node had swollen up where it looked like my collar bone was broken. Needless to say, I can't even produce antibodies to get any good or bad test results.

I really just want it all to leave my brain alone. The poor lil feller has enough to deal with. I've decided to try this diet of pretty much all raw green stuff. I'm hoping I last at least 3 days before I pick up some cupcakes. Hah.

Oh, here's a video of an upcoming feature. http://www.openeyepictures.com/underourskin/
It wont play sometimes for me, so I click the little arrow next to "HD". I don't know if anyone else has that problem or if it's just me.
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Last edited by Ellie; 10-09-2007 at 12:27 PM. Reason: Added movie link
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