Anyone here ever treated for Lyme Disease?

[Rewster]

Lyme Disease Basics for Providers - ILADS

Lyme Disease Basics for Medical Professionals A Brief Primer by International Lyme and Associated Diseases Society ILADS works to educate and support medical professionals in order to facilitate their provision of timely and effective care for patients with Lyme and other tick-borne diseases...

www.ilads.org

If you suspect Lyme go to a LLMD - a Lyme literate Medical Doctor. Particularly if you are not getting a the positve on the regular blood work.

I have been on the bad side of Lyme for 15 years. It can be a crushing disease and is not to be fooled with. Early detection and antibiotics are the key along with a knowledgeable Doctor that will test using both Elisa and Western blot.
If those are negative( don’t concern yourselves with false positives , it’s the false negatives that will ruin your life) consider having a blood test done by a lab called IGENEX which is considered to be very reliable in the Lyme community. In addition any Doctor who suspects Lyme disease should test for what is called Co-infections such as bartonella,babesia,erlichiosis, to name few. Ticks carry more than just the bacteria that causes Lyme. Having a co-infection like bartonella or babesia can be equally debilitating and could result in treatment failure if not addressed.

The last few years in Lyme have seen a large infusion of research. It really is a travesty the neglect from Doctors, insurance companies, research dollars etc the people with chronic Lyme have had to endure. Not to mention the expense of treatment because most doctors will not treat for chronic Lyme and you end of paying out of pocket for an LLMD which can be very expensive.

Interestingly the latest research has suggested that an old drug called Antabuse (disulfiram) might give us chronics new hope. It is used for alcoholics to stop drinking as it makes then feel sick as hell when they drink. The mechanism by which it kills or prevents the replication of the Lyme bacteria is not understood yet but many people are having very good results but it is early.

I used to know about the particular bands a long time ago but I fortunately tested very positive after my doctor finally came around to testing after I insisted.
Please be sure to have your loved one go to a LLMD. As attested to in this thread a lot of people get treatment and get better but a percentage either have what is now considered persisters or possibly develope auto immune issues.

Hope this helps and good luck.

 

[Rewster]

Upstater are you in CT.
Have you tried Dr Moorcroft in Kensington.
Last I heard he was not taking on new patients but that was a bit ago.

 

[upstater]

Upstater are you in CT.
Have you tried Dr Moorcroft in Kensington.
Last I heard he was not taking on new patients but that was a bit ago.

I'm in Buffalo, NY.
I've called several LLDs from Albany through Westchester, and they are all booked out for several months, which is why I want our locals to prescribe. We are also looking into just paying out of pocket in Canada.
Our last chance up here is a rheumatologist who other doctors think is a loon. I am hoping for an extreme degree of looniness from her to help us. We're also seeing an integrative/holisitic provider this week. We're taking an all-hands-on-deck approach. We are willing to hear loony pet theories, blah-blah, etc., if at the end of the appointment she prescribes the damn medication.

 

[Kajik]

Got it 2yrs ago,knew I had it from the specific symptoms,ordered doxy from canada,within 5 days I felt normal.took doxy for 2 more weeks.I found a tick this spring,pulled him off whole but ordered more doxy just in case,I have 180 pills I don't need,which cost 50$

 

[JakeTheDog]

Had it when I was 19. Pretty sure the testing was inconclusive but I showed enough symptoms(fatigue, aches, Bell's Palsy) my doctor prescribed a round of doxy. Finshed the anti-biotics and haven't had any recurrence. An unpleasant couple weeks though.

 

[CTMike]

Steroids essentially turn off your immune system and can cause the disease to run rampant. There is one decent doctor in FL that I know of in the Jacksonville area but she may have to come up to the northeast for the best doctors.

Any recommendations welcome. Thanks.

 

[Dream Jobbed 2.0]

Bee venom

 

[Horatio]

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?

 

[Uconnfanatic]

I'm in Buffalo, NY.
I've called several LLDs from Albany through Westchester, and they are all booked out for several months, which is why I want our locals to prescribe. We are also looking into just paying out of pocket in Canada.
Our last chance up here is a rheumatologist who other doctors think is a loon. I am hoping for an extreme degree of looniness from her to help us. We're also seeing an integrative/holisitic provider this week. We're taking an all-hands-on-deck approach. We are willing to hear loony pet theories, blah-blah, etc., if at the end of the appointment she prescribes the damn medication.

You might try Dr Maureen McShane in Plattsburgh,NY. She is a good LLMD. Her # is 518-324-5548.

 

[ZenConn]

I caught mine early - 2 days after getting bit by a tick and showing the bullseye rash on the back of the knee. Took about 3 weeks of antibiotics and seemed to be okay. I've had some joint pain recently but I'm not sure if it's from me getting older (approaching 50) or from something else.

Just a word of advise. If you golf in an area known to have deer, don't go into the woods or high brush looking for your ball. A $5 Titleist isn't worth getting Lyme disease.

 

[Spaceman213J]

I know someone who works for the CDC. She writes literature for them, but one of the things she really knows about is lyme disease. I've heard her and my mom discuss lyme disease a lot because she thinks my mom should ask our family doctor to have her tested and treated for it. A few years ago my mom was diagnosed with granular aricheosis (that's probably not spelled correctly) another tick borne disease that can be deadly if not treated. My mom is still have some physical problems and her friend things she may have had lyme disease also or has gotten it since.
Anyways, she really knows her stuff on it and she basically says this:
1)Tests can detect it, but they really aren't that reliable.
2)Symptoms are the best indicator and believes you should be treated as long as you have them.
3)A lot is still unknown, especially the long term effects on the body of the disease.

I know it's probably not any help, but that is what she would tell you and I don't think there are many people in the world who know more than her on the subject.

 

[Travelman6]

At the tail end of my chemo treatments I was diagnosed with lyme disease. I was aching all over, even more tired than I usually felt after the "normal" chemo (has anyone ever heard of "chemo brain" and the long term side effects?). I feel like, mentally, my mind has never been the same after that onslaught of chemo + whatever I was given to treat the lyme, my brain just feels slower. I am still of reasonable intelligence but I feel like I miss a beat here and there.

 

[upstater]

You might try Dr Maureen McShane in Plattsburgh,NY. She is a good LLMD. Her # is 518-324-5548.

Thank you very much

 

[upstater]

At the tail end of my chemo treatments I was diagnosed with lyme disease. I was aching all over, even more tired than I usually felt after the "normal" chemo (has anyone ever heard of "chemo brain" and the long term side effects?). I feel like, mentally, my mind has never been the same after that onslaught of chemo + whatever I was given to treat the lyme, my brain just feels slower. I am still of reasonable intelligence but I feel like I miss a beat here and there.

I'm very sorry to hear that. Lyme does have cognitive issues associated with it. People try a variety of medicines, including a 3-antibiotic cocktail that has been shown to eradicate the persister strain of the Lyme bacteria. But, it could also be a variety of other tick-borne bacteria.

 

[Excalibur]

Six months ago I could have had you send samples to my wife, as her company was studying possible new Lyme detection tests. Unfortunately their grant renewal was denied by NIH, so it is stalled at this point.

Everything you have seen posted by others is spot on. The tests are notoriously inaccurate, and diagnosis should be based on a combination of symptoms and test results.

Most research is focusing on better early detection as opposed to more accurate late stage testing. My wife’s company is hoping to resubmit in January.

 

[superjohn]

Have you heard about Lyme Arthritis? There are treatments for it, but antibiotics don't work.

I've seen it when looking into Lyme disease. She says she has a little bit of arthritis in her hands but her mom had that as well when she got older. She says she's feeling better lately and has been active dancing and starting up yoga but it was pretty bad over the winter with back and shoulder pain and being run down and it's been going on for a few years now with no answers.

 

[upstater]

Six months ago I could have had you send samples to my wife, as her company was studying possible new Lyme detection tests. Unfortunately their grant renewal was denied by NIH, so it is stalled at this point.

Everything you have seen posted by others is spot on. The tests are notoriously inaccurate, and diagnosis should be based on a combination of symptoms and test results.

Most research is focusing on better early detection as opposed to more accurate late stage testing. My wife’s company is hoping to resubmit in January.

Crazy that they would refuse to fund test development when tests aren't accurate

 

[upstater]

I've seen it when looking into Lyme disease. She says she has a little bit of arthritis in her hands but her mom had that as well when she got older. She says she's feeling better lately and has been active dancing and starting up yoga but it was pretty bad over the winter with back and shoulder pain and being run down and it's been going on for a few years now with no answers.

If the arthritis is related to Lyme, the expert in Boston uses DMARDs to treat them, and he's had success. DMARDs are what they use to treat Rheumatoid Arthritis.

 

[Excalibur]

Crazy that they would refuse to fund test development when tests aren't accurate

NIH needs to see a path to commercialization. They admittedly had some issues in that front.

 

[Chelo]

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.

 

[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.