Lyme Disease

[blueta2]

I have always wondered what about the tick that has Lyme that has attached to an animal. Has it been confirmed yet, I surely don't doubt it. I mean if you can get lyme from the tick than why not an animal such as deer, cow, etc.
That is scary when you actually sit down and think about it all.

You would think since we can get it from infected blood.
There are not enough studies to back this up yet.
Prob with lyme the government is trying to ignore it.
George Bush had lyme last year and it was not reported until it was leaked

 

[Cutiebaby]

You would think since we can get it from infected blood.
There are not enough studies to back this up yet.
Prob with lyme the government is trying to ignore it.
George Bush had lyme last year and it was not reported until it was leaked

I dont even see why there needs to be studies done, it should be found out via common sense. Like you said we can get it from infected blood...They have come to the conclusion that other diseases can be spread, I don't see why this one should be any different.
Wow, no I never heard about Bush having Lyme disease. Then again I don't pay much attention to politics of the people involved.

 

[blueta2]

I dont even see why there needs to be studies done, it should be found out via common sense. Like you said we can get it from infected blood...They have come to the conclusion that other diseases can be spread, I don't see why this one should be any different.
Wow, no I never heard about Bush having Lyme disease. Then again I don't pay much attention to politics of the people involved.

Lyme activists believe it can be spread via meat, but since the CDC and government won't recognize it, it's hysteria for now.
I never ever recall being bit by a tick EVER and I have lyme. Go figure!

They tried to keep Bush's infection secret.

 

[RottenWillow]

I have always wondered what about the tick that has Lyme that has attached to an animal. Has it been confirmed yet, I surely don't doubt it. I mean if you can get lyme from the tick than why not an animal such as deer, cow, etc.

You can. I got it from a stray cat bite most likely.


Without going into all the details, suffice to say the cat was clearly ill, bit me, and within about 3 months my white cell count was below normal, and within about six months I was quite sick. Never developed any sort of rash around the bite though.

 

[guest username]

If you see a rash after being in a wooded area, go to your doctor. If it's the typical rash (you can Google erythema migrans), your doc can prescribe a single prophylactic dose of doxycycline that will reduce your chances of getting full-fledge Lyme disease.

Most physicians are not convinced that chronic Lyme disease exists. Many of those patients are labeled as drug seekers because of their dependence on narcotics.

 

[blueta2]

For RottenWillow

http://www.tribecafilmfestival.org/filmguide/Under_Our_Skin.html

 

[RottenWillow]

For RottenWillow

http://www.tribecafilmfestival.org/filmguide/Under_Our_Skin.html

I actually found that elsewhere last week. Some of those peeps got it real bad!

 

[pappad]

Talk to Dr. Patricia Salvato in Houston. She is a leading authority on Lyme Disease.

 

[RottenWillow]

Well I'm getting a Picc line on 4/25 and will be pushing 4 grams of Rocephin once daily for 6 weeks. Also taking Actigall to protect my gall bladder from biliary sludging (mmmm.....nice) and a third drug before each meal to absorb as much of the neurotoxins from the lyced Bb as possible.


A word of advice to anyone who thinks they may have Neuroborelliosis ("lyme disease"), DO NOT take any multimineral preparations. I tried that twice and both times the paresthesias and arthritic pain spread like wildfire. The bacteria loves those minerals. Magnesium is fine, calcium is fine, iron seems to be ok, copper in only very small quantities (2mg daily maximum), and any Zinc at all is playing with fire, but if you feel you must, a max of 25mg daily, and then carefully monitor for any rapidly advancing symptoms. Any other minerals is walking through a mine field.

 

[blueta2]

Hey girl, sorry to hear that.
Why Picc and not orals?
Is this your first time on abx?
were you relapsing?

I have a phone consult with my LLMD today actually and I'm considering going back on orals. This time I may try Levaquin for the bart.
I've been off abx for a month now and I'm relapsing. I'm also on homeopathy, but not sure it's working.

True, you have to be very careful with Mag when taking some abx. I took some mag while on doxy and I was throwing up most of the day.

 

[guest username]

I trained and worked at hospitals where Lyme was seen very, very frequently. A PICC line is rather extreme in my experience in seeing probably at least 100 patients with serology-confirmed Lyme disease.

How was neuroborreliosis diagnosed? I'm assuming you had an LP?

 

[blueta2]

I trained and worked at hospitals where Lyme was seen very, very frequently. A PICC line is rather extreme in my experience in seeing probably at least 100 patients with serology-confirmed Lyme disease.

How was neuroborreliosis diagnosed? I'm assuming you had an LP?

A pic line is usually given when the lyme does not respond to orals and or the lyme symtoms are severe.
I was dx through Igenex. There are no proper tests in canada for lyme

What state was the hosp in where you worked?

 

[guest username]

A pic line is usually given when the lyme does not respond to orals and or the lyme symtoms are severe.
I was dx through Igenex. There are no proper tests in canada for lyme

What state was the hosp in where you worked?

I'm familiar with PICC lines. That wasn't the question. A PICC line is rather extreme for Lyme disease though.

Were you diagnosed by way of a lumbar puncture? Neuroborreliosis can only be diagnosed by a lumbar puncture. Serology does not diagnose neuroborreliosis, and in fact will only show if you've ever been exposed to Lyme, not whether it is currently active.

I will not mention which state or hospital I worked because I try to maintain my privacy. I will say that it's "closely affiliated with the person who originally described Lyme disease in the US."

The Lyme experts at that hospital -- who are world renown and who speak at numerous medical gatherings -- are not convinced that chronic Lyme disease exists. They thing that an autoimmune response can be triggered by the Borrelia burgdoferi bacteria, and that can cause the body to attack its own joints. However, at this point, treatment with antibiotics is a futile measure since the person's body is already producing antibodies that injure the joints. It's a similar process to rheumatoid arthritis.

 

[blueta2]

I'm familiar with PICC lines. That wasn't the question. A PICC line is rather extreme for Lyme disease though.

Were you diagnosed by way of a lumbar puncture? Neuroborreliosis can only be diagnosed by a lumbar puncture. Serology does not diagnose neuroborreliosis, and in fact will only show if you've ever been exposed to Lyme, not whether it is currently active.

I will not mention which state or hospital I worked because I try to maintain my privacy. I will say that it's "closely affiliated with the person who originally described Lyme disease."

The Lyme experts at that hospital -- who are world renown and who speak at numerous medical gatherings -- are not convinced that chronic Lyme disease exists. They thing that an autoimmune response can be triggered by the Borrelia burgdoferi bacteria, and that can cause the body to attack its own joints. However, at this point, treatment with antibiotics is a futile measure since the person's body is already producing antibodies that injure the joints. It's a similar process to rheumatoid arthritis.

Thanks for your info, Not all accurate though.
A spinal tap also does not prove + for lyme. Serology can detect lyme and does detect lyme. Though with serology you can have false negatives.
Most lyme dx are done on a clinical basis.

The only Lyme experts are actually LLMD (lyme literate dr's) and I can assure you, they are not saying lyme does not exist.
Who are these dr's? Give names to back it up?

Treating lyme with abx is not futile, but can be if treated too long w/out results. Abx take the germ load down and one then has to build a stronger immune system from there.

Anyway, I'll let RottenWillow take over from here.

 

[guest username]

As I mentioned earlier, serology does NOT demonstrate active Lyme disease. It demonstrates exposure to it. Lyme serologies use an enzyme-linked immunosorbent assay to test for IgG antibodies to Lyme (a Lyme titre). If this is detected, then it is confirmed by a Western blot. Very few laboratories are able to test for IgM antibodies to Lyme (which would imply a more active or recent infection). Where I worked, we were able to do IgM antibodies. Where I work now we aren't able to do them. In cases of active disease, this titre is elevated in about 70% of individuals. The remainder have only a small baseline titre.

Yes, you are correct. Lyme disease is a clinical diagnosis. I frequently diagnosed it based on rash, Bell's palsy presentation, etc. However, neuroborreliosis is isolated to neural tissue, and it requires a lumbar puncture to demonstrate Lyme being present in the cerebrospinal fluid. One can suspect neuroborreliosis, but to definitively diagnose it, you require a lumbar puncture. It's like diagnosing someone with a MRSA abscess -- you can suspect it and treat it, but you can only definitively diagnose MRSA with a culture swab and antibiotic sensitivities. To diagnose you with neuroborreliosis without CSF B. borgdoferi antibody index is really doing yourself a disservice.

LLMD? That must be a Canadian term. There is no board-specialty certification process for Lyme-trained physicians in the US. However, the hospital I worked at was the US leader in Lyme research.

Remember, antibiotics are not without side effects. You will likely think much differently about the benign nature of antibiotics if you develop C. difficile colitis from them.

You really should do more research prior to your antibiotics. Steroids have shown benefit in people with post-Lyme disorder. Antibiotics are pointless for post-Lyme, and a PICC line is not a benign thing. I've seen my fair share of people with clots, infections, etc. (I'm not talking about line clots; I'm talking about DVT's.)

 

[blueta2]

As I mentioned earlier, serology does NOT demonstrate active Lyme disease. It demonstrates exposure to it. Lyme serologies use an enzyme-linked immunosorbent assay to test for IgG antibodies to Lyme (a Lyme titre). If this is detected, then it is confirmed by a Western blot. Very few laboratories are able to test for IgM antibodies to Lyme (which would imply a more active or recent infection). Where I worked, we were able to do IgM antibodies. Where I work now we aren't able to do them. In cases of active disease, this titre is elevated in about 70% of individuals. The remainder have only a small baseline titre.

Yes, you are correct. Lyme disease is a clinical diagnosis. I frequently diagnosed it based on rash, Bell's palsy presentation, etc. However, neuroborreliosis is isolated to neural tissue, and it requires a lumbar puncture to demonstrate Lyme being present in the cerebrospinal fluid. One can suspect neuroborreliosis, but to definitively diagnose it, you require a lumbar puncture. It's like diagnosing someone with a MRSA abscess -- you can suspect it and treat it, but you can only definitively diagnose MRSA with a culture swab and antibiotic sensitivities. To diagnose you with neuroborreliosis without CSF B. borgdoferi antibody index is really doing yourself a disservice.

LLMD? That must be a Canadian term. There is no board-specialty certification process for Lyme-trained physicians in the US. However, the hospital I worked at was the US leader in Lyme research.

Remember, antibiotics are not without side effects. You will likely think much differently about the benign nature of antibiotics if you develop C. difficile colitis from them.

You really should do more research prior to your antibiotics. Steroids have shown benefit in people with post-Lyme disorder. Antibiotics are pointless for post-Lyme, and a PICC line is not a benign thing. I've seen my fair share of people with clots, infections, etc. (I'm not talking about line clots; I'm talking about DVT's.)

Well aren't you so smart Dr Swat ;-)


Listen, LLMD is a universal term for a Lyme Literate Dr.
In fact there are only 2 LLMD's in all of Canada. They are mostly in the US.

I respect that you have a medical degree, but I am lyme literate (as lyme literate as my own dr and as most lyme patients are) and can tell you that most of your information is incorrect.

For example, lyme bacteria feed of steroids and most people who have lyme and are dx with lupus and/ or RA and are given steroids go into a free fall and actually crash.

I was on 4 diff abx full dose for 4 months and yes had a lot of side effects, but I have less symptoms now than before I took them. I'm now treating with homeopathy and soon with herbs.

I didn't fear c diff because I was taking Flagyl along with S Boulardii, so I had no fear.

You may be a Doc with lot of knowledge about other infections, but Lyme is not one of them.
I can connect you with some of the best Lyme dr's in the world who can give you a quick 101 if you really want to learn
And PLEASE do not treat lyme patients with Steroids. You will kill them.
Doc, Willow and I can talk you under the table about lyme.

 

[blueta2]

As I mentioned earlier, serology does NOT demonstrate active Lyme disease. It demonstrates exposure to it. Lyme serologies use an enzyme-linked immunosorbent assay to test for IgG antibodies to Lyme (a Lyme titre). If this is detected, then it is confirmed by a Western blot. Very few laboratories are able to test for IgM antibodies to Lyme (which would imply a more active or recent infection). Where I worked, we were able to do IgM antibodies. Where I work now we aren't able to do them. In cases of active disease, this titre is elevated in about 70% of individuals. The remainder have only a small baseline titre.

Just to add, Igenex does the most accurate testing of IGG and IGM. Most other tests such as the Elisa are useless as well as West Blots given in most state labs.
Most LLMD's and the CDC use Igenex, I believe Prez Bush's blood was sent there when he had lyme.


There is also Frye lab which is doing more acccurate testing for the co-infections.

For the patients you treated for lyem, did you treat them for co infections?

 

[guest username]

That's OK. You stick with your homeopathy and I'll continue treating and curing my patients.

That's just wrong that you treat yourself with metronidazole just to prevent C. diff. The problem is you shouldn't be treated with antibiotics anyhow.

So when your course of therapy fails, feel free to PM me and I'll arrange for you to see a specialist here in the US that is the leading expert on Lyme disease. Today's controversial treatments are tomorrow's standard of care. This man truly is on the cutting edge of Lyme disease.

This is my end of contributions to this thread.

 

[blueta2]

That's OK. You stick with your homeopathy and I'll continue treating and curing my patients.

That's just wrong that you treat yourself with metronidazole just to prevent C. diff. The problem is you shouldn't be treated with antibiotics anyhow.

So when your course of therapy fails, feel free to PM me and I'll arrange for you to see a specialist here in the US that is the leading expert on Lyme disease. Today's controversial treatments are tomorrow's standard of care. This man truly is on the cutting edge of Lyme disease.

This is my end of contributions to this thread.

You're obviously very ignorant about lyme, like the majority of the medical community.
Oh really? Have you cured a lyme patient?...haha!
Give me the details on how you cured them? You can't because you know squat about treating lyme.
Your medical degree does not make you an expert on lyme.
Like I said, giving steriods to a lyme patient can kill them. This is one of the most DANGEROUS things you can give.

I HIGHLY doubt the guy you know is on the cutting edge of lyme, but thanks for the offer. I doubt I'd be taking advice from a medical dr who rx's steriods to a lyme patient or who doesn't know that Flagy is one of the ONLY two abx given to treat c diff.
Fucking scary that you're actually treating patients.

When you realize what lyme is all about, it will be you PM'ing me for the CORRECT information.

And I'm glad this is the end of your contribution.

 

[blueta2]

Folks, this is a great example of a Dr you don't want to be treated by. One with an EGO too big for his own good.

The scary part, most dr's are like this guy. Thinks he's a know-it-all on an illness cause he's a dr. It's dr's like this dude that misdiagnosed me for years.
A medical degree only means they went to school longer than you, then they shove their heads up their asses and look at their paychecks.

Thank God for educated patients....dr's like this dude will be obsolete one day

 

[blueta2]

I just sent this info to my LLMD, who by the way is one the TOP Lyme dr's in the US and here was her reply

"For anyone new to all this, lumbar puncture (spinal tap) is rarely effective in testing for lyme. It's like fishing. You dip your net into a pond and you may get a fish. Lucky.

However, if you dip your net (the needle) into the pond (fluid in spine) and come up with out a fish (particular bacteria) that does mean that the pond has no fish. It just means your net did not catch any.
there are several lyme researchers who have written, advising against the use of lumbar punctures as a diagnostic tool for lyme as they are simply not an accurate measure.

I don't have the excerpts or links now - I may have them somewhere in my computer, but I've gotta go now. Out of steam"

 

[blueta2]

Here you go, from lyme research

Misdiagnoses can contribute to chronic Lyme disease when doctors subscribe medications for diseases or conditions they believe their patients have, but in fact they do not. This can have disastrous results. For example, the use of cortico-steroids will replicate the spirochetal bacteria that cause Lyme disease. Therefore, steroids are to be avoided where Lyme disease is suspected, and they are contraindicated. Some Lyme-literate doctors believe that steroid use while Lyme bacteria are present will cause chronic Lyme disease. But, ignorant of the possibility of the presence of the Borrelia burgdorferi bacteria, medical doctors have mistakenly prescribed steroids to control inflammation, with calamitous results for their patients.

 

[blueta2]

Here is the guidelines written by Dr Burrascano who is THE top lyme Dr in the world.

This guideline is given to PCP when treating lyme with the consult of an LLMD. This is the Lyme bible.
I hope you print this out and use it.

http://www.lymediseaseassociation.org/drbguide200509.pdf

 

[blueta2]

Summer is here and lyme is rampant. Just a word to all about keeping an eye out for any bites from ticks or any other insect.


Some very informative videos
This one made me cry cause I relate to this one the most. No Dr in my country knows how to treat me nor does my government want to acknolwdge lyme disease.





Darryl Hall (from Hall and Oats) talking about his lyme

 

[blueta2]

Lyme on Good Morning America

 

[blueta2]

wow, this dude says it all

 

[blueta2]

Lyme on CBS


http://www.cbsnews.com/sections/i_video/main500251.shtml?id=2940713n

 

[BBR100]

wow, this dude says it all

Debilitating disease. Physically, mentally and emotionally.
A constant struggle but never stop the fight.

 

[drsketch]

Did you get a tick on you in the woods? Animal bite you?

 

[blueta2]

Did you get a tick on you in the woods? Animal bite you?

I have no idea. I've been not well for over 14 yrs not knowing why.
Lyme is transmitted by ticks, fleas, mosquitos and black flies, so I could have gotten it anywhere.
Most people with lyme have no idea how they got it. Most do not recall any bite

 

[blueta2]

I Can Go For That

An interview with Darryl Hall

you can read the entire article here.
Philly is one of the lyme hot spots

http://www.philadelphiaweekly.com/articles/17226/cover-story


I can go for that


In July 2005 Daryl Hall says he woke up feeling like he’d been “beaten with a baseball bat.” He figured it was the flu and stalled traveling a few days before flying out for a show in Phoenix.

It was right in the middle of covering “She Used to Be My Girl” by the O’Jays, he says, that his body shut down.

“I managed to get offstage and collapse … I was just down on the ground. It surprised everybody, especially the guys in the band, and John. I just said, ‘Go, John, go! Just do something.’ I literally walked offstage and fell down.”

Hall’s got a balls-to-the-wall work ethic and professional pride that comes from working hard to get what you’ve got. He wasn’t happy about having to cancel the rest of the tour to recover from what he still thought was a wicked flu. He called his doctor when he got home.

“He checked me and didn’t really see anything wrong. Now you know that story,” he says.

Indeed I do, I say to Daryl Hall, as we bitch about Lyme disease on the phone from upstate New York.

It was Sara Allen (his ex-girlfriend and “Sara Smile” muse) who anecdotally diagnosed it as Lyme. Allen, who has the disease herself, advised him to get tested.

Luckily, Hall’s body had produced enough antibodies by that point to register on the tests. His doctor prescribed two weeks of Doxycycline. But Hall had done some Internet research and wanted to ensure he was treated correctly. He went to Dr. Joseph J. Burrascano Jr.

Burrascano is one of the most well-known and controversial Lyme-literate doctors, having written a sort of rebel Lyme treatment guide in association with the International Lyme and Associated Diseases Society (ILADS). In 2001 New York State’s Administrative Review Board for Professional Medical Conduct brought a case against Burrascano for medical negligence. The charges included prescribing long-term antibiotic therapy for Lyme disease. He’s now retired.

Twenty to 30 percent of ticks carry multiple infections. Hall tested positive for Babesia, Ehrlichiosis, Borrelia and Bartonella, common tick-borne co-infections. According to the American Lyme Disease Foundation, there are 10 major tick-borne diseases carried by 82 species of ticks currently found in the United States. Testing for co-infections isn’t currently a part of standard screening.

“That’s the thing the CDC doesn’t recognize,” Hall says. “People are misdiagnosed and underdiagnosed, and most people have multiple diseases and they’re not treated for them. Doxycycline treats only Borrelia. The other ones just rage in your body or go into hiding or change shape.”

In retrospect, Hall had symptoms before the Phoenix fall: tremors, headaches and fevers. He’d blamed it on stress and allergies.

“I’ve been treated for these four [diseases], and now recently found out I have two more. So I have six different tick-borne diseases I’m dealing with. But I’m feeling good and I’m on a regimen,” he says.

His active symptoms were no joke.

“I had joint pains. A lot of skin problems where I’d break out in strange herpetic kinds of rashes. I had shingles, immune system breakdown and a lot of stiff necks and extreme tiredness. Eye things, ear things,” he says.

He says his ear would just “close,” estimating that he went about 70 percent deaf. For a musician, that’s 100 percent fucked.

Hall has homes in rural New York and Maine, both Lyme hotspots. He spends most of his time in New York. He laughs when I ask him if he knows anyone else with Lyme disease.

“Who do I know who doesn’t have Lyme disease?” he says before getting back to raging against the medical machine.

“You know, I’ve been trying to fight for the truth in Lyme disease, and it’s hard for me to even get any press because nobody seems to believe it matters,” he says, his voice rising. “It’s very frustrating and depressing, really, that this disease has such little support and understanding.”

Hall’s been pounding pavement and doors about Lyme disease since his diagnosis. He plays benefit concerts and writes press releases. While talking about Lyme disease on the Howard Stern Show last year, he said, “Kill all the fuckin’ deer!”

He thinks people think he was kidding. But he’s dead serious about slashing the deer population in the interest of Lyme disease prevention.

The number of deer in a given area determines the number of deer ticks, which in turns determines the amount of Lyme disease. Deer ticks can’t maintain high levels of fertility when feeding only on smaller animals like rabbits and rodents. Due to conservation efforts, suburban sprawl and the elimination of natural predators, the deer population has skyrocketed to unnaturally high levels, throwing the ecological balance out of whack.

It’s well-documented that when the neighborhood of Mumford Cove in Groton, Conn., dramatically reduced their deer population, cases of Lyme disease plummeted.

On Monhegan Island, a gorgeous little spot off the coast of southern Maine, 13 percent of residents had enough Lyme disease to show up in tests. Tired of being sick, they voted to eradicate the deer population with sharpshootersin August 1999. After a few years, the deer tick population crashed, and no new no cases of Lyme have been reported.

It’s assumed President Bush caught Lyme while vacationing at the Walker family compound in Kennebunkport, Maine. When Dubya announced last August that he’d been treated for Lyme disease the previous year, Hall’s hopes for drawing attention to the Lyme wars rose.

It’s customary to report presidential health matters, so it’s unusual that his Lyme disease diagnosis was kept under wraps for a year. The official story is that it was detected early and resolved fully. Not surprisingly, Bush didn’t do anything for Lyme awareness or prevention. Ironically, his dad H.W. dedicated Lyme Disease Awareness Week back in 1989.

Nothing much came of that either. Though it’s interesting that the elder Bush’s statement from back then acknowledges that if Lyme disease isn’t treated early, “serious complications may develop that can affect the heart, nervous system or joints,” which contradicts the medical establishment’s current stance that chronic Lyme doesn’t exist.

Daryl Hall knows that being wealthy and famous, he and Bush had it good and have access to the level of treatment the rest of us often struggle to find. The difference is Hall gives a shit.

He says, “I was one of the lucky ones because I went to the top. But I’ve heard countless stories of frustration and misdiagnosis and needless suffering of Lyme patients because of incompetence and strange agendas.”

 

[heavy_duty]

CTV News is going to talk about it tonight during 11:00pm news.

 

[blueta2]

CTV News is going to talk about it tonight during 11:00pm news.

I know, my phone rang twice after 11 to let me know

The story was filled with mis-information, but I'm happy that some awareness about lyme is hitting the news.

Thanks HD

 

[all the whey]

Re: I Can Go For That

An interview with Darryl Hall

you can read the entire article here.
Philly is one of the lyme hot spots

http://www.philadelphiaweekly.com/articles/17226/cover-story


I can go for that


In July 2005 Daryl Hall says he woke up feeling like he’d been “beaten with a baseball bat.” He figured it was the flu and stalled traveling a few days before flying out for a show in Phoenix.

It was right in the middle of covering “She Used to Be My Girl” by the O’Jays, he says, that his body shut down.

“I managed to get offstage and collapse … I was just down on the ground. It surprised everybody, especially the guys in the band, and John. I just said, ‘Go, John, go! Just do something.’ I literally walked offstage and fell down.”

Hall’s got a balls-to-the-wall work ethic and professional pride that comes from working hard to get what you’ve got. He wasn’t happy about having to cancel the rest of the tour to recover from what he still thought was a wicked flu. He called his doctor when he got home.

“He checked me and didn’t really see anything wrong. Now you know that story,” he says.

Indeed I do, I say to Daryl Hall, as we bitch about Lyme disease on the phone from upstate New York.

It was Sara Allen (his ex-girlfriend and “Sara Smile” muse) who anecdotally diagnosed it as Lyme. Allen, who has the disease herself, advised him to get tested.

Luckily, Hall’s body had produced enough antibodies by that point to register on the tests. His doctor prescribed two weeks of Doxycycline. But Hall had done some Internet research and wanted to ensure he was treated correctly. He went to Dr. Joseph J. Burrascano Jr.

Burrascano is one of the most well-known and controversial Lyme-literate doctors, having written a sort of rebel Lyme treatment guide in association with the International Lyme and Associated Diseases Society (ILADS). In 2001 New York State’s Administrative Review Board for Professional Medical Conduct brought a case against Burrascano for medical negligence. The charges included prescribing long-term antibiotic therapy for Lyme disease. He’s now retired.

Twenty to 30 percent of ticks carry multiple infections. Hall tested positive for Babesia, Ehrlichiosis, Borrelia and Bartonella, common tick-borne co-infections. According to the American Lyme Disease Foundation, there are 10 major tick-borne diseases carried by 82 species of ticks currently found in the United States. Testing for co-infections isn’t currently a part of standard screening.

“That’s the thing the CDC doesn’t recognize,” Hall says. “People are misdiagnosed and underdiagnosed, and most people have multiple diseases and they’re not treated for them. Doxycycline treats only Borrelia. The other ones just rage in your body or go into hiding or change shape.”

In retrospect, Hall had symptoms before the Phoenix fall: tremors, headaches and fevers. He’d blamed it on stress and allergies.

“I’ve been treated for these four [diseases], and now recently found out I have two more. So I have six different tick-borne diseases I’m dealing with. But I’m feeling good and I’m on a regimen,” he says.

His active symptoms were no joke.

“I had joint pains. A lot of skin problems where I’d break out in strange herpetic kinds of rashes. I had shingles, immune system breakdown and a lot of stiff necks and extreme tiredness. Eye things, ear things,” he says.

He says his ear would just “close,” estimating that he went about 70 percent deaf. For a musician, that’s 100 percent fucked.

Hall has homes in rural New York and Maine, both Lyme hotspots. He spends most of his time in New York. He laughs when I ask him if he knows anyone else with Lyme disease.

“Who do I know who doesn’t have Lyme disease?” he says before getting back to raging against the medical machine.

“You know, I’ve been trying to fight for the truth in Lyme disease, and it’s hard for me to even get any press because nobody seems to believe it matters,” he says, his voice rising. “It’s very frustrating and depressing, really, that this disease has such little support and understanding.”

Hall’s been pounding pavement and doors about Lyme disease since his diagnosis. He plays benefit concerts and writes press releases. While talking about Lyme disease on the Howard Stern Show last year, he said, “Kill all the fuckin’ deer!”

He thinks people think he was kidding. But he’s dead serious about slashing the deer population in the interest of Lyme disease prevention.

The number of deer in a given area determines the number of deer ticks, which in turns determines the amount of Lyme disease. Deer ticks can’t maintain high levels of fertility when feeding only on smaller animals like rabbits and rodents. Due to conservation efforts, suburban sprawl and the elimination of natural predators, the deer population has skyrocketed to unnaturally high levels, throwing the ecological balance out of whack.

It’s well-documented that when the neighborhood of Mumford Cove in Groton, Conn., dramatically reduced their deer population, cases of Lyme disease plummeted.

On Monhegan Island, a gorgeous little spot off the coast of southern Maine, 13 percent of residents had enough Lyme disease to show up in tests. Tired of being sick, they voted to eradicate the deer population with sharpshootersin August 1999. After a few years, the deer tick population crashed, and no new no cases of Lyme have been reported.

It’s assumed President Bush caught Lyme while vacationing at the Walker family compound in Kennebunkport, Maine. When Dubya announced last August that he’d been treated for Lyme disease the previous year, Hall’s hopes for drawing attention to the Lyme wars rose.

It’s customary to report presidential health matters, so it’s unusual that his Lyme disease diagnosis was kept under wraps for a year. The official story is that it was detected early and resolved fully. Not surprisingly, Bush didn’t do anything for Lyme awareness or prevention. Ironically, his dad H.W. dedicated Lyme Disease Awareness Week back in 1989.

Nothing much came of that either. Though it’s interesting that the elder Bush’s statement from back then acknowledges that if Lyme disease isn’t treated early, “serious complications may develop that can affect the heart, nervous system or joints,” which contradicts the medical establishment’s current stance that chronic Lyme doesn’t exist.

Daryl Hall knows that being wealthy and famous, he and Bush had it good and have access to the level of treatment the rest of us often struggle to find. The difference is Hall gives a shit.

He says, “I was one of the lucky ones because I went to the top. But I’ve heard countless stories of frustration and misdiagnosis and needless suffering of Lyme patients because of incompetence and strange agendas.”

Is that why CMarc sent me this video, and said it was about you?

 

[blueta2]

LOL......HAHAHHA....Thank God for my BFF. You make me laugh
Love ya

 

[heavy_duty]

http://www.citynews.ca/news/news_24476.aspx

 

[blueta2]

http://www.citynews.ca/news/news_24476.aspx

awesome. Thanks for that. I'll post it on my lyme site. I heard about that meet up. They had one in Vancouver also

There was a lyme segment on Good Morning America this morning as well.

Here's the link to the segment if anyone wants to watch it

http://abcnews.go.com/Video/playerIndex?id=5309680

 

[blueta2]

You know what, I hope you guys take the time to watch the GMA video

 

[heavy_duty]

I'm a bit paranoid these days because I camp & hike every other weekend at different lakes/parks all over Ontario and I have 2 little ones 4 & 6.

Last weekend I got bit by something and my elbow was double the size for 2 days
I think it was a spider bite.

 

[blueta2]

I'm a bit paranoid these days because I camp & hike every other weekend at different lakes/parks all over Ontario and I have 2 little ones 4 & 6.

Last weekend I got bit by something and my elbow was double the size for 2 days
I think it was a spider bite.

I know, this illness is making people nuts.
Lyme is rampant, so make sure you check for ticks and any rashes on you and the kids.
You know how to reach me if GOD FORBID you need info.

 

[gotmilk]

The State of Maine just released a tick study. Only 3 in 10 Moose babies make it due to tick infestation. 3 in 10 adults do not make it thru the Winter because the ticks make them so ill.

It's getting worse.

 

[Raptorex]

The State of Maine just released a tick study. Only 3 in 10 Moose babies make it due to tick infestation. 3 in 10 adults do not make it thru the Winter because the ticks make them so ill.

It's getting worse.

how many banjo players on porches make it after mating season in Maine?

 

[gotmilk]

how many banjo players on porches make it after mating season in Maine?

No banjo players, that's a Southern Redneck thing.

We have guys who play "spoons" and blow into old milk jugs

 

[RottenWillow]

The State of Maine just released a tick study. Only 3 in 10 Moose babies make it due to tick infestation. 3 in 10 adults do not make it thru the Winter because the ticks make them so ill.

It's getting worse.

It's important to know that ticks are certainly not the only vector for transmitting the various infections associated with Lyme Disease. Some species of mosquitoes and stinging flies carry some or all of the infections as well.

I personally got Borrelia, Bartonella, and Babesia from a cat bite, not a tick bite.

 

[blueta2]

The State of Maine just released a tick study. Only 3 in 10 Moose babies make it due to tick infestation. 3 in 10 adults do not make it thru the Winter because the ticks make them so ill.

It's getting worse.

wow! crazy!
Where can I find this study? I would love to send it to my lyme doc

And like RW, ticks are not the only carriers. My lyme doc just told me she's treating a young boy who was bit my hit dog who has lyme.
And did you know dogs can get tested and treated for lyme better than a human? There is better testing. I know some lyme folks who were tested my their vets.

 

[gotmilk]

http://mainehuntingtoday.com/bbb/2008/06/25/ticks-taking-toll-on-moose/

 

[blueta2]

http://mainehuntingtoday.com/bbb/2008/06/25/ticks-taking-toll-on-moose/

thanks dude, much appreciated

 

[blueta2]

Fresh from CNN this last night. I missed the segment but here is the segment and the article
http://www.cnn.com/2008/HEALTH/cond...treatment/index.html?iref=24hours#cnnSTCVideo




By Ronni Berke
CNN


NEW YORK -- For more than 10 years, Mandy Hughes drifted in an out of what she calls the horrible, debilitating pain of Lyme disease.


Mandy Hughes says the pain she suffered for more than 10 years was due to Lyme disease

"It literally feels like you got into a severe accident, like you were hit by a Mack truck and you were allowed no medical attention," she says.

After being bitten by a tick at 19, Hughes broke out in hives and suffered fever and chills so severe that she had to be hospitalized. She was diagnosed with Lyme disease and was sent home with two weeks' worth of the antibiotic tetracycline. She seemed to be cured.

But over the years, the Lyme symptoms flared back -- crippling joint pain, muscle spasms, headaches and facial paralysis. She visited 15 doctors, yet they were unable to arrive at a diagnosis. Several thought she had multiple sclerosis. Others knew she was sick but didn't know why. Lyme had been ruled out.

"Maybe it's psychological -- we don't really have an explanation," they told Hughes. "Your tests are coming back fine, Mandy." Watch a report on a 10-year battle with Lyme disease symptoms »

The memory of one doctor's visit stays with her to this day. She went to see him with joint pain so severe, she said, her hands were curled into a palsy-like position. Yet the doctor seemed impatient with her.

"You're obviously an attractive woman, and you're just trying to get attention," she recalls him saying.


In 2005, Hughes went to see what some patients refer to as a "Lyme-literate" doctor -- one willing to diagnose chronic Lyme disease and prescribe a long-term regimen of intravenous as well as oral antibiotics.

Within three months, she began to feel better. After 15 months, she was back on her feet, but had to abruptly halt treatment when her doctor was sued by an insurance company and stopped seeing patients. Learn more about Lyme disease »

Hughes' story is featured in a new documentary called "Under Our Skin," which takes a look at the leaders of the Infectious Diseases Society of America, a national medical group that represents health care professionals who specialize in infectious diseases. The society's purpose, according to its Web site, is to improve health care in areas related to such diseases.

In particular, the documentary takes aim at the 14-member panel that wrote the 2006 Lyme disease treatment guidelines. The guidelines question the existence of chronic Lyme disease and claim the post-treatment symptoms of some patients appear to be "more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection."

The guidelines list specific criteria for diagnosing Lyme -- such as an obvious tick bite, a characteristic bull's-eye rash at the site of the bite, facial paralysis and a positive blood test.

Yet some Lyme specialists say many patients experiencing symptoms do not see or remember a tick bite. Only 70 to 80 percent get the rash at all, according to the Centers for Disease Control and Prevention.

The longer the disease goes undiagnosed, the harder it is to treat, some doctors say.

"The disability associated with Lyme disease is worse than the disability that you might see with someone after a heart attack," said Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center in New York.

Patient advocates criticize the IDSA for recommending no more than a month's worth of antibiotics to treat Lyme. They say insurance companies use the guidelines to deny payment for long-term antibiotic therapy.

But the IDSA says there are inherent risks from such treatment, including localized infection from the IV line and the creation of antibiotic-resistant bacteria.

One IDSA critic, Connecticut Attorney General Richard Blumenthal, conducted an antitrust investigation of the guideline process, saying the panel ignored or minimized other medical opinions regarding chronic Lyme disease. Blumenthal said the process was tainted by conflict of interest because members of the panel consulted for insurance companies and at least one had a patent for a Lyme disease treatment.

Gary Wormser, chief of infectious diseases at New York Medical College and one of the guidelines' authors, denies those allegations, calling them "preposterous."

"What we did recommend was not treating with unsafe or prolonged courses of antibiotic therapy," Wormser said.

In a settlement with Blumenthal, the IDSA agreed to reassess its 2006 guidelines with the assistance of an outside arbiter.

The heart of the debate is whether patients actually have Lyme disease, or simply symptoms that are mistaken for Lyme disease.

"The problem is that the majority of patients that carry the diagnosis of chronic Lyme disease actually have the same kinds of symptoms: fatigue, musculoskeletal pain, sometimes brain fog. ... The majority of such patients actually don't have any evidence of ever having had Lyme disease." Wormser said.

There's a lot at stake. The CDC reports approximately 20,000 new cases of Lyme disease a year, with the number doubling from 1991 to 2005. Factoring in underreported cases, the CDC says the actual number could be three to 10 times higher.

"We have an epidemic of Lyme disease," said Daniel Cameron, president of the International Lyme and Associated Diseases Society, which rejects the IDSA guidelines and says the chronic form of the disease may be prevalent in up to 62 percent of the population in areas where Lyme disease is endemic.


Fallon says standard blood tests fail to detect the Lyme infection in 20 to 30 percent of patients.

"Most reasonable academic physicians throughout the United States would acknowledge that there's a large number of patients out there who do have chronic, persistent symptoms. The question is, why do they have those symptoms?" he says.

 

[blueta2]

Just an FYI (Maryland)

 

[blueta2]

I got a call that the CBC (canadian network) wanted to interview me.
When I called the reporter, she told me she put out the word that she wanted to speak to Canadian's with lyme and got over 100 calls in the first hr.

She never interviewd me but did tell me the CBC has found government documents that show Lyme is now an epidemic in North America and the governments are hiding this fact.

When Bush had lyme, no one knew. The info was leaked. CNN makes it breaking news when Bush has a full physical, but they never reported his lyme until it was leaked.

Interesting.

 

[Bikini Mod]

If you see a rash after being in a wooded area, go to your doctor. If it's the typical rash (you can Google erythema migrans), your doc can prescribe a single prophylactic dose of doxycycline that will reduce your chances of getting full-fledge Lyme disease.

Most physicians are not convinced that chronic Lyme disease exists. Many of those patients are labeled as drug seekers because of their dependence on narcotics.

It's truly awfull to be suffering so and to have anyone doubt your authenticity.