Anyone here ever treated for Lyme Disease?

[diggerfoot]

If so, I'd appreciate hearing from those who were not treated early (or cured). I'd especially appreciate it if you'd be willing to discuss the testing process. Specifically what testing process did you use?

My main questions are about the Western Blot test, the one with the different bands of antibodies.

The CDC requires that you test reactive on 5 bands, but that criteria was created in 1994, about a decade after the Lyme testing process began. 25 years have passed now since the CDC made the guidelines, and a lot more is known, so the CDC is currently in the midst of revising guidelines and consulting with experts. In the meantime, for a medical community in my area that is not well versed in Lyme, the 5 band criteria are being used. One of my family tested for 3 bands, two of which are the strongest indicators of Lyme. So now I'm in the position of garnering information and next steps while the local community seems t be woefully behind the times.

Anyone ever test for less than 5 bands and yet received treatment for Lyme?

Lyme is an avocational hazard for long distance hiking, particularly with unfinished trails that one uses map and compass to go cross-country. I learned about it early on and thus new what was happening when I first contracted it in 1984, from a tick in East Lyme! Since I was attending grad school in Ithaca at the time the doctor I went to see knew little about it, doubted I had it, but listened to me and treated it accordingly. I completely recovered.

I contracted it two more times, knew I had it within 2-7 days, treated it immediately and recovered fully. Beside equipped with knowledge my immune system functions very well. The problem with both testing and researching for Lyme is that afflictions vary greatly in accordance with the immune response. You may no show for the antibodies but still have the disease. I do not know what the best course of action is for the medical community, but for individuals keeping your immune system as healthy as possible is the best course of action ... for virtually anything.

 

[Adios]

Another reason I am glad I left CT years ago.

Invasive species and new diseases aren't going to stop....

 

[upstater]

Lyme is an avocational hazard for long distance hiking, particularly with unfinished trails that one uses map and compass to go cross-country. I learned about it early on and thus new what was happening when I first contracted it in 1984, from a tick in East Lyme! Since I was attending grad school in Ithaca at the time the doctor I went to see knew little about it, doubted I had it, but listened to me and treated it accordingly. I completely recovered.

I contracted it two more times, knew I had it within 2-7 days, treated it immediately and recovered fully. Beside equipped with knowledge my immune system functions very well. The problem with both testing and researching for Lyme is that afflictions vary greatly in accordance with the immune response. You may no show for the antibodies but still have the disease. I do not know what the best course of action is for the medical community, but for individuals keeping your immune system as healthy as possible is the best course of action ... for virtually anything.

One of the problems is that with the kind of debilitating joint pain my daughter has, which can be a symptom of Lyme, you sometimes get sent to a rheumatologist to check on arthritis. & of course one of the things they try immediately is steroids, and cortisone shots. My daughter had both. These two things lower your body's immune response and allow Lyme bacteria to proliferate. It's the exact thing you shouldn't do. She's felt worse since doing it 3 months ago! Sigh.

 

[Adios]

Don't do cortisone shots at a young age! Will hasten deterioration of the cartilage. I used to get them and have stopped. Only to be used as a last resort.

Stupid doctors.

 

[Waquoit]

Invasive species and new diseases aren't going to stop....

But this was a case where an irritant left the state

 

[Adios]

But this was a case where an irritant left the state

And bragged about it?

 

[FriarJ]

My son was diagnosed with it in Maryland after months and months of other testing. My ex happened to be talking to some lady in Florida who said please have him tested for Lyme disease. She went back to the doctor with him even though he was an adult and made the doctor test him for Lyme. The doctor was somewhat resistant(clueless about it) But he did it and the results were positive. He ended up getting an appointment at John Hopkins Lyme Disease Research Center and was put on a whole concoction of drugs. He seems to be symptom free now but has really changed his diet and lifestyle frankly.

I will find out the testing and treatment and get back to you.

 

[Uconnfanatic]

My son was diagnosed with it in Maryland after months and months of other testing. My ex happened to be talking to some lady in Florida who said please have him tested for Lyme disease. She went back to the doctor with him even though he was an adult and made the doctor test him for Lyme. The doctor was somewhat resistant(clueless about it) But he did it and the results were positive. He ended up getting an appointment at John Hopkins Lyme Disease Research Center and was put on a whole concoction of drugs. He seems to be symptom free now but has really changed his diet and lifestyle frankly.

I will find out the testing and treatment and get back to you.

It won't matter. Lyme illness & treatment is very individual. What works for one person may not work for the next. It's a complex illness with a host of variables.

 

[Uconnfanatic]

One of the problems is that with the kind of debilitating joint pain my daughter has, which can be a symptom of Lyme, you sometimes get sent to a rheumatologist to check on arthritis. & of course one of the things they try immediately is steroids, and cortisone shots. My daughter had both. These two things lower your body's immune response and allow Lyme bacteria to proliferate. It's the exact thing you shouldn't do. She's felt worse since doing it 3 months ago! Sigh.

Exactly right. Steroids are the worst thing to give a Lyme patient because they suppress the immune system & let the Lyme spread unchecked. Rheumatologists & Infectious Disease doctors are more responsible for misdiagnosis & mistreatment of Lyme patients than all other specialties combined. Sadly, those are the two specialists that PCPs consider Lyme experts & refer suspected Lyme cases to. They are far from Lyme literate.

 

[Uconnfanatic]

Lyme is an avocational hazard for long distance hiking, particularly with unfinished trails that one uses map and compass to go cross-country. I learned about it early on and thus new what was happening when I first contracted it in 1984, from a tick in East Lyme! Since I was attending grad school in Ithaca at the time the doctor I went to see knew little about it, doubted I had it, but listened to me and treated it accordingly. I completely recovered.

I contracted it two more times, knew I had it within 2-7 days, treated it immediately and recovered fully. Beside equipped with knowledge my immune system functions very well. The problem with both testing and researching for Lyme is that afflictions vary greatly in accordance with the immune response. You may no show for the antibodies but still have the disease. I do not know what the best course of action is for the medical community, but for individuals keeping your immune system as healthy as possible is the best course of action ... for virtually anything.

Unfortunately, one of the characteristics of the Lyme bacteria (Borrelia Burgdorferi) is that it has the ability to disable the immune system. Often even people with healthy immune systems can end up very debilitated due to Lyme. It's a menace to say the least.

 

[MarkH95]

Any recommendations welcome. Thanks.

Dr. Shirley Hartman

Home - Mandarin Wellness Center

 

[MarkH95]

Thanks for this.

Unfortunately, we've found there are no Lyme literate doctors around us. We'll likely be going well out of our way. We have appointments with people NEXT YEAR (yes, we called multiple LLDs, and they are fully booked). We're looking to make arguments to have our locals give the medication now, prior to seeking out doctors. As well, the LLDs are asking for $3k per office visit.

I was the one who mentioned Steere, and I know he is a Chronic Lyme denier (doesn't believe antibiotics are treating the central Lyme bacteria after the initial treatment, but rather other co-infections or still other viruses, like Epstein-Barr). I only mentioned him because he does believe there is such a thing as Lyme Arthritis, which is caused by either damage to joints from untreated Lye or else an autoimmune response which obviously can't be treated by antibiotics. He is one of the few doctors that use DMARDs for this, common drugs for people with RA, but people with Lyme Arthritis don't present as RA to rheumatologists.

If only we could get the Rheumatologists to actually talk to the LLDs. But it doesn't appear as though that is happening.

At the very least I learned 2 things in this thread:

1. Many doctors in Connecticut prescribe the meds prior to test results, if they see symptoms, as variable as they may be.
2. Many patients aren't quite aware of what the tests actually say when the doctors tell you you are negative or positive.

I am glad we requested a transcript of my daughter's test results, or we would have gone away not knowing that her so-called negative was actually a positive of the ELISA test, and then 3 bands Lyme-reactive on the Western Blot, which of course earned her a negative overall.

See Dr. Sabovic in Bridgeport. Excellent Lyme doctor. Reasonable prices and wait times.

 

[jibsey]

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?

 

[upstater]

UConnfanatic has been immensely helpful to me, and I owe him a debt of gratitude. He shows that the Boneyard, for all its goofiness and contrariness and, well, fanaticism, can also be a serious, helpful, respectful and most of all friendly place.

 

[jdb50]

I was part of a study by Smith/ Kline at Yale in the early 90's. We were given a series of 3 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 groin area, 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.

 

[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]

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]

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.