Under Our Skin

[Maz]

A new movie about chronic Lyme Disease that has been long in the making is set to premiere soon and about which the Lyme Community is all abuzz. This website is a good read, if you're interested in the many faces of Lyme.

Here are some quotes from the site:

“There is general agreement that most cases are mild to moderate if treated promptly. But therein lies a problem. As of yet, there are no reliable tests for Lyme disease. Fewer than 50% of patients diagnosed with Lyme ever find the offending tick or telltale bull's eye rash. Available blood tests yield a high percentage of false negatives due to the crafty nature of the spirochete, which is able to change into a dormant, undetectable cyst form, or hide within white blood cells, the very cells that are supposed to destroy invading bacteria. Further, new research shows that the bacteria are able to exchange genetic material with one another and change the outer proteins of its cell walls, allowing the organisms to mutate and effectively hide from targeted human antibodies. The situation is complicated by the fact that there are over 300 strains of the bacteria that cause Lyme disease, and the test kits used by most labs don't detect all of these varieties. This results in thousands of false negative Lyme tests, delaying the treatment of many infected patients”.

“The widely held perception is that Lyme disease is a minor, nagging illness that is easily treated and cured with 14 to 30 days of antibiotics. When an individual complains of persistent illness, they are often told that the symptoms are psychosomatic or are caused by an autoimmune condition for which there is no cure”.

“Lyme disease has been called the new “great imitator” because of its ability to mimic other diseases. Patients are routinely told they might have multiple sclerosis, Lou Gehrig's disease, fibromyalgia, systemic Lupus, Alzheimer's, chronic fatigue syndrome or rheumatoid arthritis. According to one physician, there is not one diagnostic feature of Lyme disease, except for the rash, that is different from any of these other conditions”.

“Although Lyme disease occurs predominantly in the northeast, cases have been documented in every state, with a large number of new infections occurring along the West Coast. To further complicate matters, the ticks that transmit Lyme also carry other bacteria, and these co-infections appear to be as complex as Lyme-and as difficult to diagnose and treat”.

http://www.openeyepictures.com/underourskin/uos_background.html

Peace, Maz

[Dena]

One of the earliest cases of Lyme disease occurred when a family in Ada, Ohio, returned from a trip to the east coast.  Their daughter, whom we all knew, became ill and one of the local doctors (one I had long since stopped going to) said it was all in her head and did nothing.  A lot of time went by before the family was able to get a diagnosis.  In the meantime, this poor child lost all her memory.  A friend of mine tutored her, and later she relapsed with a total memor loss.  She ultimately was able to finish high school and we were all so proud of her.  Then, she became ill again and passed away.  None of us in that community will ever forget his. I wonder if her case is being chronicled in the movie.

Please let us know when and where this movie will be shown.

[Maz]

Hi Dena,

I should get a notification from my Lyme support group when the movie comes out and will pass it along. I think they're premiering it first at some film festival, but are not allowed to release details until the marketing is in place….something like that. The stories on this site are really fascinating…and sad to read…everyone is affected differently by this disease.

So sad to hear about the young girl you knew. It really is a tragedy how many cases get overlooked. Something is not right about this whole picture. The IDSA completely overlooked 100's of studies that demonstrated that chronic Lyme does indeed exist when they drew up the new CDC treatment guidelines. It can't all just be about big egos…

The good news is that the Lyme community is not going to go away soon and studies are now proving that the spirochete exists after standard treatment, though blood serum levels read negative. When this is all blown open, which I think it will be down the road, it should pave the way for more recognition of stealth pathogens and abx therapy.

Interestingly, there is a pharmaceutical company already trying to manufacture a tetracycline derivative to retain its immunomodulatory properties without the abx properties with the belief that this will treat various rheumatoid diseases without antibiotic resistance. They're either wasting their money in this research and Brown, Nicholson, TM, etc will be vindicated (which I suspect will be the case) or we'll all be looking through new glasses.

Thanks for sharing your story, Dena.

Peace, Maz

 

[Cheryl F]

[user=27]Maz[/user] wrote:

“studies are now proving that the spirochete exists after standard treatment, though blood serum levels read negative. When this is all blown open, which I think it will be down the road, it should pave the way for more recognition of stealth pathogens and abx therapy. “

Interestingly, there is a pharmaceutical company already trying to manufacture a tetracycline derivative to retain its immunomodulatory properties without the abx properties with the belief that this will treat various rheumatoid diseases without antibiotic resistance. They're either wasting their money in this research and Brown, Nicholson, TM, etc will be vindicated (which I suspect will be the case) or we'll all be looking through new glasses. 
 

Just a note I want to add here.  I know we have all heard that it takes many years (too many) for research to get into mainstream medical practice.  Just yesterday, the subject of Jess' molecular biology class was mycoplasma and spirochetes.  The text book completely supported what Dr. Brown and other researchers sho support the infectious componet of rheumatic disease believed.  Jess read some of it to me and it sounded as though it came straigh out of a true AP believer's post on this board.  It talked about how they hide inside the cells, etc, etc, etc.  Why is this written so definitely in a college text book, yet, when we ask many doctors about it we get ignored?  I honestly don't get it.

Cheryl

[John McDonald]

Physicians aren't trained in science the way practicing scientists are. At first I thought this was wrong and in many ways it is, but their job is fundamentally different. There is still no where near enough known about the body and disease and treatment. Though medicine has come a long way, the physician is still routinely forced to treat diseases for which there is no known cause. Often their craft is still, today, more akin to magic, leeching and bloodletting than it is real science. Yet we patients demand from them hope, understanding and a cure. This is surely as much psychotherapy and bar-tending advice as it is science. Physicians have a tradition going back milenia that isn't so strongly science based as we might like. But how many of us are rational and scientific when our loved ones are injured and near death. Also, how often does a physician see a patient recover or fail when everything he has been taught contradicts this. They themselves become used to magic. We demand of our physicians something quite different than science and by the ancient laws of supply and demand, they deliver it. They aren't trained to be scientists, not the way classic scientists are trained. They use science as a means to deliver their real product which is considerably more complex. I don't get angry at physicians for being in their peculiar trade. But I am happy enough to be angry with individual physicians if they are pig-headed.

Some day there will be a general consensus among bio-medical scientists that CWD-bacteria cause these many diseases. After a generation or two the physcians will come around, and once the cause and treatment are known then treating a rheumatic disease will become as straight-forward as treating leprosy now is. Meanwhile we patient pioneers have to keep pushing to keep this treatment available.

[Jennhere]

Reading this stuff makes me realize I'm a part of something bigger than myself.  It's crazy that I tripped and fell across this website in my daaaaaarrrkkkeeessstt hour…. :crying:    Aahh.. remember the days?:blush:  Still.  Me- taking a drug “off label”, refusing medicines offered by “specialists”, taking the advice of strangers on-line for my health and well-being…it's been a strange couple of years!

Jenn

[Michele]

Hey guys,

We are certainly part of something bigger, Jenn. You are so right.

Maz, you said,

“Interestingly, there is a pharmaceutical company already trying to manufacture a tetracycline derivative to retain its immunomodulatory properties without the abx properties with the belief that this will treat various rheumatoid diseases without antibiotic resistance. They're either wasting their money in this research and Brown, Nicholson, TM, etc will be vindicated (which I suspect will be the case) or we'll all be looking through new glasses.”

Do you mean they are trying to leave out the microbe destroying aspect and only keep the immune suppressant part of the tetracycline derivative? Or the other way around?

Michele

[Maz]

[user=50]Michele[/user] wrote:

Do you mean they are trying to leave out the microbe destroying aspect and only keep the immune suppressant part of the tetracycline derivative? Or the other way around?

 

Yes, the former. They are trying to design a new tetracycline without the antibiotic properties, just the immunomodulatory properties.

I found out about this after reading the news article about the MS and Mino trials they are doing in Canada and searched for the pharm site. I think they are in RI, if memory serves. I posted the link on the old BB and have it bookmarked on my laptop, but it's still waiting to be serviced, as the screen got detached at the hinges. Kind of how I feel some days!:D

Peace, Maz

 

[Pip]

When you get that link again, would you post it.  I've heard about it…but never saw anything like that.  Sounds like urban legend – until you remember EXACTLY how Pharma operates.

Pip

[Maz]

[user=23]Pip[/user] wrote:

When you get that link again, would you post it.  I've heard about it…but never saw anything like that.  Sounds like urban legend – until you remember EXACTLY how Pharma operates.

Pip

Hi Pip…yeah, sorry I can't give you the name of the actual Pharma Co doing this research now.  May be a while before I get my laptop back. Wish I was better at backing up my files! :doh:

You might find this article rather interesting, though, not only for the research being done on the non anti-microbial properties of the tetracyclines, but also in how they are said to “ameliorate” complications of diabetes (as per discussion on IPT thread). 

http://adr.iadrjournals.org/cgi/issue_pdf/frontmatter_pdf/12/2.pdf

[align=left]”TCs are now known to inhibit angiogenesis, to inhibit cancer cell invasion and metastasis, to ameliorate several complications of diabetes, to restore osteoblast/clast function, and to inhibit expression of inducible nitric oxide synthase (iNOS) and other pro-inflammatory cytokines.”[/align]
[align=left]Peace, Maz[/align]

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