OT: Anyone here ever treated for Lyme Disease?

[upstater]

I contracted Lyme sometime last year and was tested and treated in Oct of last year. My natropath tested me for lyme and came back negative but positive in three bands of the western blot. She explained to me that the bands that were positive show that my body was making antibodies for Lyme. I decided to bring my tests to my PCP for review and he said he couldn't prescribe me antibiotics because I did not have enough positive bands to warrant antibiotics! Luckily, a friend of mine, who also is fighting Lyme connected me to a Cardiologist in Madison that treats Lyme patients. She is on the international board for Lyme. Well respected in the Lyme community. I brought her all my testing paperwork and she immediately prescribed me Doxy for 2 months. I did have a flair up in May in which I needed 2 more weeks of Doxy. I feel so much better now. No muscle pain or brain fog.

This sounds remarkably familiar--way, way, way too familiar. Glad to hear things are better.

 

[Rewster]

I contracted Lyme sometime last year and was tested and treated in Oct of last year. My natropath tested me for lyme and came back negative but positive in three bands of the western blot. She explained to me that the bands that were positive show that my body was making antibodies for Lyme. I decided to bring my tests to my PCP for review and he said he couldn't prescribe me antibiotics because I did not have enough positive bands to warrant antibiotics! Luckily, a friend of mine, who also is fighting Lyme connected me to a Cardiologist in Madison that treats Lyme patients. She is on the international board for Lyme. Well respected in the Lyme community. I brought her all my testing paperwork and she immediately prescribed me Doxy for 2 months. I did have a flair up in May in which I needed 2 more weeks of Doxy. I feel so much better now. No muscle pain or brain fog.

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. There is also a Dr Hoadley out of Long Meadow MA. Both Kessler and Hoadley take insurance(some at least).
Hoadley gave me 11 months of Iv antiobiotics so she is not afraid of being aggressive although at the time she was not to concerned about the cyst form or coinfections much. Finding a doctor to treat you long term is difficult. Finding one to treat you long term and takes insurance is near impossible.

 

[husky8273]

I just saw an ad last week where their testing a vaccine. Hopefully it comes out soon. Does anyone know of any repellent that works?

knew someone in his 70s who had the vaccine in early 2000s. will test positive for Lyme after receiving it. Unfortunately, a test for Lyme before receiving the vaccine was either ineffective or misdiagnosed and missed the presence of Lyme. When he tested positive for Lyme after being vaccinated, it was attributed to the vaccine and not Lyme. Went untreated for too long and chronic symptoms persisted until his passing. Did not know the vaccine was pulled years ago.

see Are We Close to a Lyme Disease Vaccine?.

 

[Guapo]

Haven’t had it had but know many who have.

Doctors in Connecticut know more about how to treat the disease better than doctors anywhere else on earth.

 

[HuskyHawk]

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.

Massachusetts is Lyme heavy too and my Dr. prescribed the antibiotics well ahead of the test based on clinical examination. Many Dr. around here know what too look for.

 

[Rewster]

Haven’t had it had but know many who have.

Doctors in Connecticut know more about how to treat the disease better than doctors anywhere else on earth.

I say this in the kindest way because I know you are well meaning but it’s a low bar you are setting.

On the whole Lyme disease is not detected or treated well anywhere.
There is a misperception on what the symptoms look like. It is missed at a high rate particularly without Bell’s palsy, swollen joints and bulls eye rash, none of which I had and my blood test where off the charts positives. I had the disease for years before I insisted on a Lyme test because I did not present in way doctors recognized.

The medical community and the country is asleep at the wheel concerning Lyme and its coinfections. The biggest push for proper treatment and research is being made by the Lyme community and very wealthy people who have given millions of their own money to search for a cure because themselves or loved ones have been debilitated by this disease.
The guidelines for treatment are archaic and this dictates the limits in which a doctor is willing to treat you. If he/she exceeds those guidelines they run a very high risk of loosing his ability to practice. Most doctors will not treat chronic Lyme.

Look I am not trying to be an alarmist. Most treated get well. The longer you go without treatment the more difficult. If you have coinfections particularly if not tested for or detected the road will be even more difficult.
My advice to anybody is to take it seriously and treat with a knowledgeable doctor.
There is a lot of research happening now. I feel very hopeful that the next 4-5 years we will be in a very good place with regard to detection and treatment.

 

[Uconnfanatic]

Haven’t had it had but know many who have.

Doctors in Connecticut know more about how to treat the disease better than doctors anywhere else on earth.

Not really a true statement. Most establishment doctors in CT (& MA) are not Lyme literate and either know little about Lyme & how to treat it or know just enough to be dangerous. They typically don't realize just how unreliable the testing is, they don't understand proper dosing and they know little about the coinfections (particularly Bartonella & Babesia) that often accompany Lyme and require additional antibiotics. It's not enough to give somebody Doxycycline, the drug of choise for acute Lyme. Common protocol of establishment is 3 weeks of Doxy 100mg 2x/day. Might work for early Lyme, might not. Too often it kills the weaker spirochetes 9bacteria) and knocks down symptoms but then full blown Lyme returns a couple months later & now it's chronic & more difficult to treat. LLMDs often prescribe 200mg of Doxy 2x/day for 1-2 months to be sure its gone to avoid relapse. So much better to err on the side of aggressive treatment early to avoid years of debilitation due to undertreatment. Unfortunately have seen this scenario far too often due to the ignorance of the medical establishment regarding Lyme & the other tick-borne infections. All New England states along with NY, NJ & PA have a number of LLMDs. Lyme support group leaders in each state are your best resources for locating Lyme practitioners. You can go to Lymenet.org to locate support groups by state. There is so much myth & misinformation that surrounds Lyme. You have to be careful about the advice you receive. People mean well but too often the advice they are providing is incorrect and or incomplete. This is a complex illness with lot of trip wires.

 

[Jaker]

Another reason I am glad I left CT years ago.

 

[Uconnfanatic]

Another reason I am glad I left CT years ago.

Lyme disease is in every state & is particularly prevalent in the Northeast, Upper Midwest, Northern California & the Northwest. But there is plenty of Lyme in the Southeast, South & Midwest. Also prevalent in Europe & Canada among other places. Don't put much trust in the CDC or their numbers. They have downplayed the disease & misinformed for years. Their five band criteria is a surveillance criteria & not meant to be used as diagnostic criteria. In 2004 at an all-day Lyme hearing in Hartford then Atty General Blumenthal made a request of the CDC representative Paul Mead that the CDC state that on their website. He had to repeat the request several times before Mead finally agreed they would post this clarifying statement. It was up on the CDC website for a year & then quietly removed. The vast majority of establishment doctors are still using this 5 band surveillance criteria to wrongly deny millions of patients a Lyme diagnosis. This means millions of patients are being misdiagnosed or undiagnosed & having treatment delayed sometimes for years. Now 15 years later the CDC is being asked to provide a clarifying statement and supposedly is going to comply. The CDC & the Infectious Diseases Society Of America (IDSA) have been big contributors to the misinformation that surrounds Lyme disease, particularly in the areas of diagnosis & treatment. It has led to a tremendous number of people ending up with a chronic, debilitating illness that could have been avoided if onlt their doctor had properly diagnosed and treated the Lyme when it was in its acute stage. In my daughter's case we just missed it. She had it in her system for a year before we realized the toll it was taking on her body & her brain. She was compensating as achievers do so her grades didn't slip & she was still competing athletically at a high level until it finally became apparent that something was wrong. Her pediatrician did diagnose her & within a month or two we did find a good LLMD. But it still took years of aggressive treatment because of the year delay. Don't take this disease lightly. Early & proper treatment are the keys.

 

[Waquoit]

Another reason I am glad I left CT years ago.

I'm surprised that treatment for Lyme is still such a mess. Over 10 years ago a guy in my office was touch and go for months, his bilirubin was all screwed up. Doesn't sound like much progress has been made since.

 

[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?

 

[Uconnfanatic]

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.