OT: - Anyone here ever treated for Lyme Disease? | Page 2 | The Boneyard

OT: Anyone here ever treated for Lyme Disease?

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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.

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.
 
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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.

The best doctors for lyme are around Connecticut seeing it was created on plum island and named after lyme, ct
 
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I had a daughter who missed high school with Lyme disease & another coinfection. She had severe fatigue & really bad cognitive deficit. Went from a straight A student to special ed student who missed all but 4 months of high school. Was also an ODP soccer player & lost it all because of Lyme. Finally after 5 yrs of aggressive treatment she got enough better to go to college & graduated with a 4.0. Now has two healthy boys & a third on the way but still suffers with fatigue & some cognitive issues but has a quality of life we never thought she'd have. Hikes 4000 footers & keeps active. Lyme is not something to be taken lightly. I have done Lyme patient advocacy for 19 yrs now. I've given 50 Lyme lectures across New Hampshire in an effort to educate the public. Have facilitated support groups in CT & NH.

First thing to know about Lyme is that the tests are highly unreliable plus doctors often misinterpret results. The 5 band criteria is a surveillance criteria & not meant to be used for diagnosis. Two bands positive means you have Lyme. Even the CDC says Lyme is a clinical diagnosis based on history of a bite & symptoms. Negative blood test does not rule out Lyme. Early diagnosis & treatment is the key. The sooner you get on treatment the better. If not caught early & treated properly, it can be a highly debilitating disease that can last for years. Most establishment doctors ieven in endemic areas like CT lack the knowledge & understanding to properly diagnose & treat Lyme & the other tick-borne diseases. Best advice I can give is to see a Lyme literate doctor & not put your faith in your PCP or any infectious disease doc or rheumatologist your PCP refers you to. They don't really know Lyme & will undertreat.
 
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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?
My youngest daughter was diagnosed with it when she was 8 or 9. She began complaining of joint pain, especially in her knees after soccer practice or matches. So we had her tested. She had none of the other classic symptoms except maybe sometimes being extra tired or sleepy. Made a full recovery with no after effects.
 
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I had a daughter who missed high school with Lyme disease & another coinfection. She had severe fatigue & really bad cognitive deficit. Went from a straight A student to special ed student who missed all but 4 months of high school. Was also an ODP soccer player & lost it all because of Lyme. Finally after 5 yrs of aggressive treatment she got enough better to go to college & graduated with a 4.0. Now has two healthy boys & a third on the way but still suffers with fatigue & some cognitive issues but has a quality of life we never thought she'd have. Hikes 4000 footers & keeps active. Lyme is not something to be taken lightly. I have done Lyme patient advocacy for 19 yrs now. I've given 50 Lyme lectures across New Hampshire in an effort to educate the public. Have facilitated support groups in CT & NH.

First thing to know about Lyme is that the tests are highly unreliable plus doctors often misinterpret results. The 5 band criteria is a surveillance criteria & not meant to be used for diagnosis. Two bands positive means you have Lyme. Even the CDC says Lyme is a clinical diagnosis based on history of a bite & symptoms. Negative blood test does not rule out Lyme. Early diagnosis & treatment is the key. The sooner you get on treatment the better. If not caught early & treated properly, it can be a highly debilitating disease that can last for years. Most establishment doctors ieven in endemic areas like CT lack the knowledge & understanding to properly diagnose & treat Lyme & the other tick-borne diseases. Best advice I can give is to see a Lyme literate doctor & not put your faith in your PCP or any infectious disease doc or rheumatologist your PCP refers you to. They don't really know Lyme & will undertreat.

I am glad your daughter is doing so much better. Mine is going into 8th grade, and she's had debilitating pain since March, and she too was doing ODP and DA prior to that. We want to get her to a Lyme doctor ASAP, and that's the problem. The ones we've called won't see us right away. So we're trying to make convincing arguments locally.
 
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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.
 
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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.
 
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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.
 
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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

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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

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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.
 

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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?
 
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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.
 
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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.
 
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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.
 
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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.
 
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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.
 
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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.
 
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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.
 
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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
 
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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.
 
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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.
 

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