OT: - Anyone here ever treated for Lyme Disease? | The Boneyard

OT: Anyone here ever treated for Lyme Disease?

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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?
 
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I have no idea about testing--I can ask me mom later.

Got it when I was a kid at camp. Sick for at least 3 months. It was complete and utter hell. Couldn't get out of bed, threw up everywhere. My neck hurt like a snitch. And I fainted all the time.

Lyme disease: 0/10 not recommended.
 
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I have no idea about testing--I can ask me mom later.

Got it when I was a kid at camp. Sick for at least 3 months. It was complete and utter hell. Couldn't get out of bed, threw up everywhere. My neck hurt like a snitch. And I fainted all the time.

Lyme disease: 0/10 not recommended.

Sounds like you've had no recurrence, which is great, so the meds took effect. The neck thing is interesting since once it gets in the joints, people start having autoimmune problems after the bacteria is killed.
 
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I'd be surprised if many people know the specifics of interpreting their tests. All I know is that my Dr. told me I had it. 3 years ago now, no issues, my initial symptoms were flu, fatigue and jaw pain, which I believe is unusual. I believe I contracted the disease 3-4 months before going on antibiotics. I was completely fine after a 3 week cycle of doxycycline
 
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I'd be surprised if many people know the specifics of interpreting their tests. All I know is that my Dr. told me I had it. 3 years ago now, no issues, my initial symptoms were flu, fatigue and jaw pain, which I believe is unusual. I believe I contracted the disease 3-4 months before going on antibiotics. I was completely fine after a 3 week cycle of doxycycline

Thanks. The reason I framed the question in this way is that doctors in Lyme-heavy regions know the murkiness of the tests, and so they are more willing to treat a patient for Lyme even if the test result doesn't accord with the CDC precisely.

This is why I was hoping someone would know about their test results, and whether they had successful treatment for a test result of less than 5 bands.
 
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Anyone ever test for less than 5 bands and yet received treatment for Lyme?

Yes and no. My experience is that doctors in CT or anywhere Lyme is common will treat you if you show symptoms of the disease. I had Bell's Palsy as a kid, and the doctors were quick to prescribe doxycycline before testing. When the tests confirmed that it wasn't Lyme they cut off the treatment. In areas where it's less common doctors might not be so quick to prescribe. Last year I had joint stiffness and aches for 2 weeks, went to the doctor and asked about the possibility of Lyme. They doubted me (this is northern MI) but ordered tests and got me a doxy prescription anyway. This one was Lyme. But I guess the point is that doctors where the disease is more common will be quicker to give you meds before testing.
 
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Wife found a tick on her and got tested. Doc said one test came back positive and the other didn’t (I’m not sure what the tests were). He said it could’ve been a false positive, but put her on some antibiotics just to be safe. She didn’t have any symptoms or anything before, and hasn’t since.
 
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Yes and no. My experience is that doctors in CT or anywhere Lyme is common will treat you if you show symptoms of the disease. I had Bell's Palsy as a kid, and the doctors were quick to prescribe doxycycline before testing. When the tests confirmed that it wasn't Lyme they cut off the treatment. In areas where it's less common doctors might not be so quick to prescribe. Last year I had joint stiffness and aches for 2 weeks, went to the doctor and asked about the possibility of Lyme. They doubted me (this is northern MI) but ordered tests and got me a doxy prescription anyway. This one was Lyme. But I guess the point is that doctors where the disease is more common will be quicker to give you meds before testing.

Yes, this is our experience right now.
 
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Had lyme disease about 10 years ago had no idea till knee blew up to about the size of a one of those small basketballs for hoops you hang on doors couldn't walk or put any weight on it. Got an MRI and blood tests done and it was determined it was lyme disease. Got put on doxycycline for 21 days and haven't had any side effects or reoccurrences since
 
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I’ve had it and was treated with antibiotics early on and during a recurrence one year later. The recurrence included swelling in my hands. I never registered on the Lyme test. Since the swelling episode I’ve been treated for RA in my hands only. My RA tests are also negative. Since I’ve started using CBD oil, my hands have improved, tho I still take Plaquenil. I still play basketball several days a week and recently re-added tennis. Also need to say that I’ve likely broken each finger at least once in my life while playing some sport.
 
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I’ve had it and was treated with antibiotics early on and during a recurrence one year later. The recurrence included swelling in my hands. I never registered on the Lyme test. Since the swelling episode I’ve been treated for RA in my hands only. My RA tests are also negative. Since I’ve started using CBD oil, my hands have improved, tho I still take Plaquenil. I still play basketball several days a week and recently re-added tennis. Also need to say that I’ve likely broken each finger at least once in my life while playing some sport.

Very interesting.

You might benefit from reading this article: Lyme Disease Is Baffling, Even to Experts

Particularly the part about the Mass. researcher Alan Steere. He thinks that some patients already treated for Lyme might develop autoimmune problems similar to RA. He treats patients with DMARDS, the drugs that treat RA, even though his patients do not have symptoms of RA other than the joint pain in a single area (RA patients have pain in many joints).
 
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From all I heard the Lyme disease test results are often inconclusive and inaccurate.
Here is an interesting and informative take on singer Daryl Hall's experience with Lyme disease:
 
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CTMike

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My mom has had several rounds while living in the northeast and was treated with standard rounds of antibiotics each time.

Now she’s in Florida... has recently had some palsy episodes and unexplained rashes... docs down there are clueless about Lyme. She’s getting treated with steroids like she’s having an allergy. Allergy tests negative. She doesn’t even mention to them about the Lyme. Head bang

If anyone knows good docs here in CT I might try to make her an appointment her next visit up.
 
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My mom has had several rounds while living in the northeast and was treated with standard rounds of antibiotics each time.

Now she’s in Florida... has recently had some palsy episodes and unexplained rashes... docs down there are clueless about Lyme. She’s getting treated with steroids like she’s having an allergy. Allergy tests negative. She doesn’t even mention to them about the Lyme. Head bang

If anyone knows good docs here in CT I might try to make her an appointment her next visit up.

Oh man, I'm sorry. We were with a top rheumatological researcher in America... who was clueless.
 
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My mom had it four times many years ago because we lived in the woods, the dog would go in the woods, and she would sleep with the dog right next to her. It was always caught right away and she responded right away to the antibiotics and was back to normal. Now many years later she seems to always be in pain. Joint pain and muscle pain all over the body. They can't say for sure what it is but I have a feeling it's lyme.

It's all over Connecticut and if untreated for many years it rears it's ugly head later on and can be devastating. I know several people who have had awful health problems for years because of it.
 
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My mom had it four times many years ago because we lived in the woods, the dog would go in the woods, and she would sleep with the dog right next to her. It was always caught right away and she responded right away to the antibiotics and was back to normal. Now many years later she seems to always be in pain. Joint pain and muscle pain all over the body. They can't say for sure what it is but I have a feeling it's lyme.

It's all over Connecticut and if untreated for many years it rears it's ugly head later on and can be devastating. I know several people who have had awful health problems for years because of it.

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

Horatio

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Yes. In 1993 I was out of work / couldn’t walk
For two months. Pretty much handicap. It started off with me thinking my arm was broken and then it spread. Miserable. When it was gone it was gone. No symptoms at all afterwards. A New Milford tic got me. I was very angry with him.
 

Dove

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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?
up...if she is cool with it I will share an email address of a coworker via a DM. Her daughter was diagnosed late and ended up having Lyme AND Babesiosis. Years later she is still seeing a doctor in Bridgeport for bloodwork analysis to see the decline of the infecting antibodies (or whatever they're called). She is close to being free.

I was fortunate to have a quick Babesiosis diagnosis last summer and took a couple of antibiotics at the same time. Beat it tho I still think my body is off ever since.
 
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up...if she is cool with it I will share an email address of a coworker via a DM. Her daughter was diagnosed late and ended up having Lyme AND Babesiosis. Years later she is still seeing a doctor in Bridgeport for bloodwork analysis to see the decline of the infecting antibodies (or whatever they're called). She is close to being free.

I was fortunate to have a quick Babesiosis diagnosis last summer and took a couple of antibiotics at the same time. Beat it tho I still think my body is off ever since.

Thanks
 

uconnphil2016

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All I know is that when folks do have Lyme a round of doxy is usually prescribed, and that the existence of “chronic Lyme” is contested. I work at an outdoors school and people get it all the time, but I luckily have not. Hope you’re better soon
 
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There isn’t a reliable test for Lyme and it’s associated confections. The Western Blot test is the best test available but it is deeply flawed and often returns false negatives (about 60% of the time). Additionally, not all labs are created equal. I’ve seen people with varying results depending on the lab used. This is why most competent, Lyme literate doctors also rely heavily on a clinical diagnosis. The persistence of Lyme after antibiotic treatment is actually not controversial (or at least it hasn’t been for more than a decade). There are many scientific studies that prove the infection persists after antibiotic treatment. In fact, about 20% of the more than 330,000 annually reported cases go on to be chronic. These cases provide significant, debilitating symptoms that have no universal treatment protocol and often leave many to struggle through years of trial and error treatment approaches with many doctors and specialists. There is a new book “Bitten” that provides real evidence the disease was actually weaponized by the US military after World War II. There are well document programs researching the weaponization of tick borne diseases in the 50’s through to 1975. A New Jersey congressman recently proposed an amendment to require the pentagon to investigate whether or not our government purposely or accidentally released a weaponized infection on the US population - specifically citing research programs at Plum Island (in Long Island Sound) and Fort Detrick. This amendment passed in the House of Representatives. While there are many who recover from symptoms with a 3 or 4 week treatment, there are tens of thousands every year that do not. Because the tests are unreliable and many uninformed doctors rely heavily on those tests many people go without treatment. The further from the original infection before treatment, the higher the likelihood the condition will become chronic. This is why finding a Lyme literate doctor as quickly as possible is so important. Lastly, someone mentioned Dr. Alan Steere in an earlier post. He is a chronic Lyme denier despite the many scientific research studies that have come out disputing the claims he has made for the last 40 years. Without going into the details, he (and Yale) have a financial interest in its denial. My suggestion to you is to find a Lyme literate doctor by engaging in online Facebook group to ask for doctors in your area. Divine Lyme Disease Support and Education is a good group. Spend the money now on a good doctor and save yourself from the risk of being in the wrong 20%. Be well and good luck.
 
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All I know is that when folks do have Lyme a round of doxy is usually prescribed, and that the existence of “chronic Lyme” is contested. I work at an outdoors school and people get it all the time, but I luckily have not. Hope you’re better soon
Chronic Lyme is only contested by people who haven’t paid attention to all of the research that has come out over the last decade plus. There is now little dispute that 20% of sufferers do not get better after treatment. There are many studies being done by major research institutions in the US to understand why.
 
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My mom has had several rounds while living in the northeast and was treated with standard rounds of antibiotics each time.

Now she’s in Florida... has recently had some palsy episodes and unexplained rashes... docs down there are clueless about Lyme. She’s getting treated with steroids like she’s having an allergy. Allergy tests negative. She doesn’t even mention to them about the Lyme. Head bang

If anyone knows good docs here in CT I might try to make her an appointment her next visit up.
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.
 

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