OT: Anyone here ever treated for Lyme Disease?

[FreeKlaiber]

i did 2 1/2 yrs on pulsed antibiotics with steven phillips out of wilton, ct, considered one of the best lyme dr in the world...he is currently working with johns hopkins,duke and tulane on a new drug to treat bartonella with a 100,000 grant from cohen foundation....the misconception among many is that "lyme" is just the borellia bacteria (a spirochete, like syphillis)...actually most people get a variety of other bacterias and parasites- the tick itself is a dirty need;le... and not all the pathogens you get are treated by the same meds......2 of the most common are babesia (malaria parasite) and bartonella an insidious relapsing bacteria (i have both)...as i was saying the testing for a drug for bartonella is based on the potential for this overlooked bacteria to be a possible cause of fibro, MS, alzheimers,parkinsons, als.... his drug, if it works, will completely shift the paradigm in medicine..... as for me, im a chronic lymie, with my symptoms starting soph yr at uconn in 1991....they said mono at the time, but now i realize its when i was probably exposed...i did 2 yrs of herbs after abx, and now i use a rife machine (google it) which uses radio frequencies delivered via metal hand and foot pads to kill the pathogens through frequency vibration....it actually works, although sometimes i feel like napoleon dynamites brother with his time machine and tinfoil

 

[upstater]

I was part of a study by Smith/ Kline at Yale in the early 90's. We were given shots and later told who was given the vaccine and who was given the placebo. I was lucky to have been given the vaccine. No side effects. This vaccine was given/offered to the public but due to cost concerns or lack of reimbursement by Ins. Cos. this has been cancelled. The company gave up offering the vaccine. Yaay American Health Ins. Industry. We have a dog who at times the last 2 Springs would get a dozen ticks on him at a time when we walked him down the road. They wind up on the furniture and in the bed. It wakes you up when you feel something moving on you. I also worked outside for 30 and 1/2 years. I have had multiple tick bites over the years and have never contracted Lyme disease. My wife who never got the vaccine did get Lyme but was able to get antibiotics to cure it. I have had a tick embedded in my , my armpit and my lower back. It is insane that this vaccine was allowed to be cancelled due to monetary reasons when you hear of the permanent injury it does to the population.

This is one of the most insane things I've ever read.

 

[upstater]

i did 2 1/2 yrs on pulsed antibiotics with steven phillips out of wilton, ct, considered one of the best lyme dr in the world...he is currently working with johns hopkins,duke and tulane on a new drug to treat bartonella with a 100,000 grant from cohen foundation....the misconception among many is that "lyme" is just the borellia bacteria (a spirochete, like syphillis)...actually most people get a variety of other bacterias and parasites- the tick itself is a dirty need;le... and not all the pathogens you get are treated by the same meds.2 of the most common are babesia (malaria parasite) and bartonella an insidious relapsing bacteria (i have both)...as i was saying the testing for a drug for bartonella is based on the potential for this overlooked bacteria to be a possible cause of fibro, MS, alzheimers,parkinsons, als.... his drug, if it works, will completely shift the paradigm in medicine..... as for me, im a chronic lymie, with my symptoms starting soph yr at uconn in 1991....they said mono at the time, but now i realize its when i was probably exposed...i did 2 yrs of herbs after abx, and now i use a rife machine (google it) which uses radio frequencies delivered via metal hand and foot pads to kill the pathogens through frequency vibration....it actually works, although sometimes i feel like napoleon dynamites brother with his time machine and tinfoil

I just googled the rife machine. It's fascinating. I read up on cancer cell frequencies as well.

 

[ClifSpliffy]

Bee venom

in and of itself, idk. but, as a lifestyle path, most definitely. compared to even just 50 years ago, we live a 'shut-in' lifestyle, which I would better describe as a 'shut-out' reality. as in, shutting out the natural world. having followed the lyme world for a great while as a component of my outdoors reality, I am familiar with those stories about the island, yale, the vaccine and such, and overall I have no strong opinion about those. I have often heard the name of a dr. katz in the new haven area as some kind of pioneer, but I don't know him as I have no reason to. bringing kids to the outdoors for a long time, I needed a template to approach the issue. back then, the cdc issued some basics which I still adhere to: a) infected ticks were like 1/10,000 and b) that 1/10000 needs 72 hours on the body. a common course of abx is no problem as a relatively benign therapy, but when I heard on npr the other day some doc talking about a 6 month run, it gave me pause. we've overused abx in an epic way for decades, and I believe the payback is underway. someone here mentioned radio frequency therapy. while I don't know specifically its effectiveness, I wouldn't be quick to dismiss it as the em spectrum is steadily being better understood, notwithstanding tesla's pioneering work long ago, ie. 'frequency and resonance.' case in point-today, 'shockwave lithotripsy' is a standard therapy to blast kidney stones. yesterday? notsomuch. lyme? I have no strong opinion, but I firmly believe we divorce from the natural world at our peril. building antibodies, stronger immune systems and all that. yogurt is magic. heck, the doctors blew it bigtime in their overzealous approach to the appendix by ripping out way too many, as further study demonstrated that it's where the system balancing bacteria are stored when the digestive system is under attack. our bodies have many known and unknown defenders residing inside, and some could use a little recharging from the natural world.

 

[upstater]

in and of itself, idk. but, as a lifestyle path, most definitely. compared to even just 50 years ago, we live a 'shut-in' lifestyle, which I would better describe as a 'shut-out' reality. as in, shutting out the natural world. having followed the lyme world for a great while as a component of my outdoors reality, I am familiar with those stories about the island, yale, the vaccine and such, and overall I have no strong opinion about those. I have often heard the name of a dr. katz in the new haven area as some kind of pioneer, but I don't know him as I have no reason to. bringing kids to the outdoors for a long time, I needed a template to approach the issue. back then, the cdc issued some basics which I still adhere to: a) infected ticks were like 1/10,000 and b) that 1/10000 needs 72 hours on the body. a common course of abx is no problem as a relatively benign therapy, but when I heard on npr the other day some doc talking about a 6 month run, it gave me pause. we've overused abx in an epic way for decades, and I believe the payback is underway. someone here mentioned radio frequency therapy. while I don't know specifically its effectiveness, I wouldn't be quick to dismiss it as the em spectrum is steadily being better understood, notwithstanding tesla's pioneering work long ago, ie. 'frequency and resonance.' case in point-today, 'shockwave lithotripsy' is a standard therapy to blast kidney stones. yesterday? notsomuch. lyme? I have no strong opinion, but I firmly believe we divorce from the natural world at our peril. building antibodies, stronger immune systems and all that. yogurt is magic. heck, the doctors blew it bigtime in their overzealous approach to the appendix by ripping out way too many, as further study demonstrated that it's where the system balancing bacteria are stored when the digestive system is under attack. our bodies have many known and unknown defenders residing inside, and some could use a little recharging from the natural world.

In Pennsylvania they funded a study to test how many ticks carried Lyme. They tested in every nook of the state. A $3m study. They found that half of all the ticks tested carried Lyme.

 

[ClifSpliffy]

The Centers for Disease Control and Prevention gives a longer time frame for transmission. "In most cases, the tick must be attached for 36 to 48 hours or more before the Lyme disease bacterium can be transmitted," the CDC website says.

Alison Hinckley, a CDC epidemiologist specializing in Lyme disease, said several studies show that a tick "needs to be attached for 48 to 72 hours to even be able to transmit the infection to a person."

Ticks And Lyme Disease: 3 Factors Determine Risk Of Infection

The chance of catching Lyme disease from an individual tick ranges from zero to roughly 50 percent. Three factors matter: the tick species, where it came from and how long the tick was feeding.

www.npr.org

 

[Adios]

In Pennsylvania they funded a study to test how many ticks carried Lyme. They tested in every nook of the state. A $3m study. They found that half of all the ticks tested carried Lyme.

Historic epidemic that's clearly way underreported. Unreal to read of half the ticks in PA carrying Lyme.

 

[FreeKlaiber]

the vaccine was actually pulled bc in a percentage of people the side effects were high....and if you read the side effects....fatigue, achiness, slowed mental cognition, tingling, joint pain- the side effects WERE LYME....there are still people today sick from the vaccine they took 15 yrs ago, bc it appears to have given them lyme...and im not an anti-vaxxer, but there is a lot more controversy about the vaccine than that previous post represents....

the big problem is the inability to find the bacteria in blood (positive tests look for the antibodies to the disease, made by the immune system, not the bacteria themselves)...which is where the debate causes the biggest problem...the percentage of the 300,000 bit a yr, who dont get better after the 30 day cdc course of antibiotics- main stream medicine says, well its not lyme keeping them sick, while lyme literate ilads doctors say you are still infected,need more abx, but bloodwork cant show that one way or another bc youre body will keep making antibodies

they did a test, with volunteers of people with chronic lyme, who had done months of abx but were still sick...they then placed "clean" raised in the lab ticks on them for 2 days....the ticks did not have lyme....after 2 days they removed the ticks, and tested, and now they had lyme....gotten from the human, who according to the cdc is cured but in fact is a reservoir of borellia....there is more of a technical discussion about did the lyme spirochete turn into a round body cyst form or form biofilms to survive the initial abx in order to survive? but until definitive testing proves the lingering nature of the bacteria, the debate that keeps sick people from insurance covered help when they most need is stuck in a political place....and what of those who dont test positive bc there bodies arent making antibodies? they wont test positive, and will eventually be labelled as having chronic fatigue syndrome, or fibro, or MS (google where MS is found in the US- its the same northern vector as the Lyme US map.... A map of multiple sclerosis by latitude people in the south dont get MS? makes one think....because MS and alot of other neuro diagnosis are labels of symptoms and show no causation...google kris kristoferssons (sp) recovery from alzheimers (that a llmd doctor "reversed" with lyme treatment, bc it was lyme in his case) sorry for the ramble

 

[FreeKlaiber]

Dr. Steven Phillips & Dana Parish this is the page of Steven Phillips, one of the leading lyme doctors in the world, yale trained and brilliant, out of wilton,ct...posts videos that are very informative about treatment, symptoms etc... he uses pulsing antibiotics (2 wks on 2 wks off)...treated many of the "famous" people with lyme (like the golfer jimmie walker) ....unfortunately its 2gs first appt, with 700$ every 2 months after that and a 2 yr waiting list, although he has PA's that follow his lead... here is an article about him refuting cdc statement point by point backed up with studies Yale-Trained Doctor Refutes Dangerous Misinformation Given by CDC's Dr. Paul Mead on Fox 5 Lyme Special

i lasted 2 1/2 yrs, but couldnt afford it, and some symptoms were getting worse, so ive been doing herbals and rife ever since....rife treatment has helped the most

 

[FreeKlaiber]

Pretty sure that is Dr Kessler. One of the first LLMD’s to treat me.
Liked her a lot. If I remember correctly she was big on using Biaxin. Followed guidelines from a MA. DR whose name escapes me.

Dr Donta is the Mass dr you cant remember the name of.... I saw Kezsler too, she mainly sticks to months of doxy these days....but she too is infected with it now

 

[Ukonnfan]

Must read book for everyone concerning lyme disease; Lab 257 by Michael C. Carroll. Stumbled across it by chance at the library a few years ago. ISBN: 0-06-001141-6.
...If Chase forgave all Canadians their credit debt in light of what had happened, what should the US government do about lyme disease?

 

[Rewster]

Dr Donta is the Mass dr you cant remember the name of.... I saw Kezsler too, she mainly sticks to months of doxy these days....but she too is infected with it now

FreeKlaiber

Have you read up on the use of Antabuse yet?

 

[Uconnfanatic]

in and of itself, idk. but, as a lifestyle path, most definitely. compared to even just 50 years ago, we live a 'shut-in' lifestyle, which I would better describe as a 'shut-out' reality. as in, shutting out the natural world. having followed the lyme world for a great while as a component of my outdoors reality, I am familiar with those stories about the island, yale, the vaccine and such, and overall I have no strong opinion about those. I have often heard the name of a dr. katz in the new haven area as some kind of pioneer, but I don't know him as I have no reason to. bringing kids to the outdoors for a long time, I needed a template to approach the issue. back then, the cdc issued some basics which I still adhere to: a) infected ticks were like 1/10,000 and b) that 1/10000 needs 72 hours on the body. a common course of abx is no problem as a relatively benign therapy, but when I heard on npr the other day some doc talking about a 6 month run, it gave me pause. we've overused abx in an epic way for decades, and I believe the payback is underway. someone here mentioned radio frequency therapy. while I don't know specifically its effectiveness, I wouldn't be quick to dismiss it as the em spectrum is steadily being better understood, notwithstanding tesla's pioneering work long ago, ie. 'frequency and resonance.' case in point-today, 'shockwave lithotripsy' is a standard therapy to blast kidney stones. yesterday? notsomuch. lyme? I have no strong opinion, but I firmly believe we divorce from the natural world at our peril. building antibodies, stronger immune systems and all that. yogurt is magic. heck, the doctors blew it bigtime in their overzealous approach to the appendix by ripping out way too many, as further study demonstrated that it's where the system balancing bacteria are stored when the digestive system is under attack. our bodies have many known and unknown defenders residing inside, and some could use a little recharging from the natural world.

In the 3 counties that were studied here in NH, they found that close to 70% of the ticks carried the Lyme spirochete & they often carry other pathogens as well. The numbers you cited are not even close to accurate. 50-70% is more like it anywhere in the Northeast. And the 24-48 hour attachment rule is a myth. You can contract Lyme in the first few hours of attachment if the spirochetes are in the tick's saliva. There is so much myth & misinformation surrounding Lyme and the CDC along with the Infectious Diseases Society of America contribute to that misinformation. Dr Ami Katz is a Lyme literate neurologist in Bridgeport who has helped many a sick Lyme patient.

 

[Uconnfanatic]

Dr Donta is the Mass dr you cant remember the name of.... I saw Kezsler too, she mainly sticks to months of doxy these days....but she too is infected with it now

Dr Donta is on the Cape in Falmouth but unfortunately is retired now. Practiced for years & helped thousands of Lyme sufferers.

 

[Uconnfanatic]

I was part of a study by Smith/ Kline at Yale in the early 90's. We were given shots and later told who was given the vaccine and who was given the placebo. I was lucky to have been given the vaccine. No side effects. This vaccine was given/offered to the public but due to cost concerns or lack of reimbursement by Ins. Cos. this has been cancelled. The company gave up offering the vaccine. Yaay American Health Ins. Industry. We have a dog who at times the last 2 Springs would get a dozen ticks on him at a time when we walked him down the road. They wind up on the furniture and in the bed. It wakes you up when you feel something moving on you. I also worked outside for 30 and 1/2 years. I have had multiple tick bites over the years and have never contracted Lyme disease. My wife who never got the vaccine did get Lyme but was able to get antibiotics to cure it. I have had a tick embedded in my , my armpit and my lower back. It is insane that this vaccine was allowed to be cancelled due to monetary reasons when you hear of the permanent injury it does to the population.

Smithkline likes to say the vaccine was removed from the market for financial reasons/lack of demand. The truth is they were facing big class action lawsuit liability because many vaccine recipients were coming down with full blown Lyme symptoms after getting the vaccine. The pharmaceutical industry is close to bringing another vaccine to market but the Lyme community is nervous about whether it will do the same thing & is fighting it. Like I said, so much misinformation surrounds this disease. I call it the most political disease in the world. Worse than Aids was at its height.

 

[FreeKlaiber]

Have you read up on the use of Antabuse yet?

yes ima few boards where the disulfiram is being trialed by people....their herxes are the worst a lot have had....i dont need to be the canary in the coal mine on that one, but its hopeful...supposed to address babesia too....im convinced that non-borellia bacteria pathogens hold a big key to why some are sick and how diff our symptoms are....i have never had joint issues, but migratory nerve pain for 20 yrs now... and i had all 13 bands positive for lyme at one point...

 

[FreeKlaiber]

there is a rife practioner (radiofrequency therapy) in guilford, dr Sedita, where you can see how well it works (online they claim its quackery) she works with a dr klass in a practice called guilford holistic health, and accept insurance, which most lyme dr dont do

 

[Uconnfanatic]

I’ve been bitten 3 times by ticks carrying Lyme. The first time I literally collapsed onto my couch with severe flu like symptoms about 8 days after the bite which I didn’t know happened at the time but traced it back to yard work in shorts that I did. The rash was noticed only 8 days after. Ran to a doctor. Took the Doxy, the blood work still came out negative which doctors say is common early. Got better. The other 2 times I noticed the bullseye rash and took Doxycycline right away more or less on my own, I wasn’t waiting around. Today the regimen is taking a single dose of 200mg within 72 hours of tick removal as prophylaxis. I feel very bad for those who didn’t take the medicine for whatever reason and have symptoms. Some of those symptoms can be caused by diseases other than tick bites but my feeling is that if you even suspect that it was a tick bite, take a Doxy because what is the down side?

Yes the IDSA & the medical establishment push a 1 dose Doxycycline regimen if treated within the first few days of the bite. I wouldn't advise this approach. Lyme doctors typically recommend a minimum 28 days of Doxy 200mg 2x/day even if caught very early. Too often a lesser dose fails to knock out all of the spirochetes & a few months down the road symptoms return & now you are dealing with a far more established, tougher to treat, late stage version of the disease. The other downside of the one dose Doxy protocol is that it sends the immune system the message that it's all taken care of so no need to produce antibodies to fight the bacteria. As a result, you won't test positive for Lyme even if you have it because the Lyme tests test for the body's antibody response. So many trip wires when it comes to this disease.

 

[Rewster]

there is a rife practioner (radiofrequency therapy) in guilford, dr Sedita, where you can see how well it works (online they claim its quackery) she works with a dr klass in a practice called guilford holistic health, and accept insurance, which most lyme dr dont do

I was DX about 15 years ago after I made the doctor run a test for Lyme.Still trying to figure it out.
Was on IV's for about 11 months years ago with Hoadley.

Been to several doctors and was in heavy ABX for years in addition to the herbs etc. Did study with Fallon also. Mainly to get free blood work from Igenex.

I use a rife machine also(GB 4000 with mopa).

Hoping this antabuse turns into something.
I have been keeping an eye on the Facebook pages dedicated to it.

 

[FreeKlaiber]

I use a rife machine also(GB 4000 with mopa).

yes i have thegb4000 too but with sr4 amp...the most important thing for me is getting the proper frequencies to treat...thats what the naturopath i see will give me, a list of freq (bart mainly at this point) that seems to change each month....i make an autochannel and the numbers always hit

 

[jibsey]

I don’t mean to question the severity of Lyme but many symptoms and conditions are attributed to Lyme without full proof. Tom Seaver lived in Ct. maybe had Lyme and his Alzheimer’s is now credited to be caused by it by some in the news reports I read. Is that definitive? Because people get Alzheimer’s. Similarly with other autoimmune diseases. Many doctors roll their eyes when asked about why Lyme is causing all these conditions. Once again I know Lyme has damaged many people if undiagnosed and treated but maybe it’s taking the blame for a lot of stuff it hasn’t caused.

 

[FreeKlaiber]

so what causes alzheimers? if they are saying thats the cause of death, fine, but he did have lyme struggles publically for yrs before....then find the letterman episode where michael j fox says hes dealing with lyme disease....about 2 yrs before his parkinsons...what causes parkinsons>? i think you see where im going... o yea and the kristofferson case... "A Slow Slipping Away"-- Kris Kristofferson's Long-Undiagnosed Battle with Lyme Disease "until you get lyme, you really dont get lyme"

 

[ClifSpliffy]

In the 3 counties that were studied here in NH, they found that close to 70% of the ticks carried the Lyme spirochete & they often carry other pathogens as well. The numbers you cited are not even close to accurate. 50-70% is more like it anywhere in the Northeast. And the 24-48 hour attachment rule is a myth. You can contract Lyme in the first few hours of attachment if the spirochetes are in the tick's saliva. There is so much myth & misinformation surrounding Lyme and the CDC along with the Infectious Diseases Society of America contribute to that misinformation. Dr Ami Katz is a Lyme literate neurologist in Bridgeport who has helped many a sick Lyme patient.

the dr katz I referred to is a guy in orange(?), nh area, who treats a friend. the friend is some kind of lyme 'poster child' who gets paid for monthly withdrawals of blood by researchers due to some uniqueness. baby boomers have been yelling and screaming about ailments and infirmities, starting with 'epstein-barr' and 'chronic-fatigue syndrome' decades ago, coincidentally with that 'cocoon' flick (1985). I don't say this to diminish the reality of lyme, but until they change the rulebook that 'you're born, you live, and then you die,' I also don't diminish the reality of aging. sepsis is a leading cause of death. rest, reasonable nutrition, and frequent movement go a long way to being your best you. folks get cranky being told that an existence increasingly dominated by 2d screentime spent in climate controlled spaces has no precedence in our evolutionary history. peanut allergy? nonsense in dimension then (every child has it!), subsequently shown to be best avoided by early exposure to peanuts now. duh. celiac/gluten? equatorial cultures responding to growing exposure to northern climes 'hard' winter wheat (ie high gluten). life seemingly works best within the rule, not the exceptions. to that end, no way, no how do I jump on another grand conspiracy train regarding the CDC. it's what they do, for a long time, and populated by men and women of the same sincerity and integrity as you and me. now, a comment about the growing tsunami known as prednisone....hoo, boy.

 

[upstater]

the dr katz I referred to is a guy in orange(?), nh area, who treats a friend. the friend is some kind of lyme 'poster child' who gets paid for monthly withdrawals of blood by researchers due to some uniqueness. baby boomers have been yelling and screaming about ailments and infirmities, starting with 'epstein-barr' and 'chronic-fatigue syndrome' decades ago, coincidentally with that 'cocoon' flick (1985). I don't say this to diminish the reality of lyme, but until they change the rulebook that 'you're born, you live, and then you die,' I also don't diminish the reality of aging. sepsis is a leading cause of death. rest, reasonable nutrition, and frequent movement go a long way to being your best you. folks get cranky being told that an existence increasingly dominated by 2d screentime spent in climate controlled spaces has no precedence in our evolutionary history. peanut allergy? nonsense in dimension then (every child has it!), subsequently shown to be best avoided by early exposure to peanuts now. duh. celiac/gluten? equatorial cultures responding to growing exposure to northern climes 'hard' winter wheat (ie high gluten). life seemingly works best within the rule, not the exceptions. to that end, no way, no how do I jump on another grand conspiracy train regarding the CDC. it's what they do, for a long time, and populated by men and women of the same sincerity and integrity as you and me. now, a comment about the growing tsunami known as prednisone....hoo, boy.

But... what about kids with Lyme? I started the thread because of my 13 year old. Others on here have discussed their children. These long-term ailments are not limited to people whose bodies have experienced some grind. They afflict very active young bodies too.

As for the CDC, the people working there can have the best intentions. But then there are external pressures that can change the way they describe the process of treatment to a general public. There is plenty of evidence to show this has happened.

And then, taking the CDC's lead, there are specialists and doctors who are woefully ignorant of Lyme. The CDC bolsters their ignorance. I personally can give you examples of top rheumatologists and infectious disease people who told me things that are laughable.

If some people have become manic because of this, let's just say they have reason to be, though of course you're going to get some mania when you have a public health crisis being dealt with so poorly.

 

[ClifSpliffy]

common sense would dictate, and from personal successful experience as well, an aggressive course of abx to treat a known bacterial infection. now, if the known infection triggers other malfunctions in the system, that's another kettle of fish. weakened immune systems cause all kinds of other malfunctions unrelated to the acute issue. I sincerely do not intend to be disrespectful. random thought, 13 year old? pre/post/currently experiencing puberty? an epic impact on the machine.