Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

Sorry. I figured.

You are smart. I get the sense you are a stats person, and I apologize if I'm wrong. My daughter taught stats at Duke, which is a respectable university in the US.

With that stats an your back, I'd have to be blind not to see how smart and informed you are.

But even I know not to believe everything I read without SOME hesitance - given the history of researchers from within the ME/CFS community.
 
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duncan said:
But even I know not to believe everything I should read without SOME hesitance - given us.
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Yeah, I'm not sure if this is only based on his own word. NIH, at least, denied it:
On July 1, NIH issued the following statement: "Dr. McSweegan has always been assigned duties appropriate to his position and pay level. The claim that he is being compensated for doing nothing is completely inaccurate."
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I have been following this for 15 or so years. But knock yourself out. It feels good to proclaim.

Edit. Sorry. @forestglip. In my world, embracing what he says is almost to comparable to wee willy.
 
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duncan said:
I have been following this for 15 or so years.
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If you can give us an update on where things are at now, that would be great @duncan.

duncan said:
Btw, look who took his place: Phil Baker.
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I didn't know/remember who Phil Baker is. This is from the American Lyme Disease Foundation, they are clearly fans. Looks like Baker retired 2023. The situation with Lyme in the US is hard to follow.

Dr. Baker served as Executive Director for over 17 years during which time he enhanced the resources and reach that ALDF provided to its readership. He has devoted his career to research and education about Lyme Disease; prior to his role at ALDF, Dr. Baker worked as a renowned scientist in the field of infectious diseases and is one of the most respected experts on Lyme Disease.

Dr. Baker ushered in a new phase of promoting scientifically accurate information about Lyme disease and confronting proponents of misinformation and unproven theories about diagnosis and treatment. He began his tenure at ALDF by publishing a piece in JAMA addressing unsubstantiated claims related to “chronic Lyme.” He felt passionately about debunking misconceptions and the rapid spread of misinformation related to Lyme Disease. To that end, he established the ALDF section entitled, “Misinformation About Lyme Disease” and “From the Desk of the Executive Director” where many articles designed to address specific areas of concern are presented.

As Lyme disease misinformation continued to spread, Dr. Baker also created a section entitled, “Physicians Resources” so that clinicians in non-endemic regions of the US could become more familiar with current methods used for the diagnosis and treatment of Lyme disease, as well as the results of recent clinical studies. When someone suspects Lyme disease, one of the biggest challenges for the public is discerning who are credible physicians and who are not. To aid in these efforts, the section entitled, “Finding a Physician” was also enhanced.
As Executive Director, he published more than 25 peer-reviewed scientific articles in leading medical journals critical of unproven diagnostic tests and long-term antibiotic treatments for Lyme disease. As a direct result of his efforts, the ALDF website regularly ranks in the top 10 of all websites devoted to Lyme disease and is widely acclaimed both nationally as well as internationally.

When he first took on the role as Executive Director, Dr. Baker stated, “at a time when misinformation is rampant, I am proud to continue to serve the interest of public health by heading the American Lyme Disease Foundation.” We can confidently say he served those interests well and has furthered the awareness and education of Lyme disease. Dr. Baker’s contributions to the field are vast, and he will surely be missed, but the ALDF expresses its gratitude for his many years of leadership, stewardship, and lifelong contributions.
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Oh dear. ::}

It is too late. Maybe tomorrow? This is horrifically wrong. This is glaringly wrong, like Wesley or short. ..




BTW: Hutan, you rock in my eyes, but im just too exhausted..
 
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Just to say here, that in a meeting held by the TAL Research group (Michal Tal), I gave specific targets of interest related to Lyme disease. Interestingly, Lyme disease disrupts phospholipids and also uses Heparan Sulfate (a Glycosaminoglycan) to attach to the host.

Both of these may be key factors for the ongoing symptoms in some patients.
 
Updating Lyme World is akin to updating US politics: It's massive and unwieldy and goes in countless directions.

The Science has inched along, but not the diagnostics. We know antibiotics often fail to eradicate Borrelia, but this is hard to prove with today's diagnostic menu. We know some patients improve on long term abx. We know some do not and in fact can be made worse on them

Lyme World is arguably divided into three territories: Infectious disease clinicians/researchers, ILADS clinicians/researchers, and the patients.

But the short of it is that unless Lyme is caught very early, the patient community is in many ways no better off in 2026 than it was in 1976.

II need to stop for now. I will continue this later.
 
Where do things stand right now in Lyme World?


Things are tribal. Everyone sticks to their own group, their own beliefs. Newbies come and have to sift through scatterings of propaganda and science. Then they have to make a judgement that is sure to be based on incomplete data.

Before I got sick, I was a partner in a research firm. I researched stuff 24/7.

I still haven't managed to entirely grasp who believes in what is true, who believes in what is glaringly false, and who is just straight up lying.

I do know that in the US close to 500,000 will get Lyme this year, and maybe as many as 20% of those will not get well.

The CDC and the NHS and leading academics and tick-borne disease credentialed clinicians all contribute, each in their own way, to the persistent crazy stall of progress.

The appalling complexities at play do not help.
 
Worth following Mayo. Tulane and Columbia . Brian Fallon worth a read. German orthodoxy is sceptical about e.g Eli and Ispot but have no problem with the terms chronische Neuroborreliose or Borreliose mit chronischem Verlauf (course). Terms used in Aertzteblatt. I asked AI if AB was about the level of National Enquirer etc. but it said it is a lot better.
 
Recently found another embedded tick, hidden on my upper back. Promptly removed, but within a couple of days a bulls-eye rash appeared, plus a fever and severe balance issues and gut problems. Doctor said it was Lyme with possible babesiosis - she was concerned about the overt neuro involvement. Ordered labwork.

I got the labwork done, but I knew it could be a waste of time. Have to wait like a month before your immune system reacts to borrelia.

Doctors.

But the doctor was nice enough to immediately prescribe doxy, preemptively, by virtue of the bullseye. 100 mg of doxy twice a day.

Curiously, my dog just two weeks ago got diagnosed with anaplasmosis, another TBD. The treatment is basically the same as for Borrelia. My dog, who weighs 50 lbs got prescribed doxy as well, at the same dose, but three time a day, vs my two times - and I weigh 175 lbs. As much as I try, I cannot explain that math.
 
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I hope that the following anecdote isn't too far out of the realm of 'scientific discussion'. The reason I want to share it is because I have had a lot of personal experience with chronic lyme treatment, most of it not great.

I've been sick since 2015 and saw my first Lyme Literate doctor in 2022. He ran a bunch of diagnostics through a private German laboratory (ArminLabs) which showed elevated Bartonella antibodies (one of the so-called co-infections of Lyme). I was put on a doxycycline protocol that also included a bunch of herbs and supplements. It lasted about a month and improved me ever so slightly, but as soon as it was over, symptoms came back. I also began to experience neuropathy for the first time during this protocol, which had never previously been an issue.
The doctor more or less dismissed me after that first protocol, saying he couldn't keep treating me.

I then went to another clinic which ran new diagnostics that showed elevated Bartonella values again, along with moderately elevated mold species and SIBO. I was attached to this clinic as a patient for roughly two years, during which I underwent a variety of different herbal protocols, detox protocols, antibiotics treatments, diets, etc. During these years I worsened drastically, though it is hard to say if it was due to the treatments or something else (like an unrelated two-day steroid treatment which definitely caused me to crash).

Most Chronic Lyme clinics (claim to) treat a large variety of illnesses (or purported illnesses) such as mold, autoimmune stuff, gastrointestinal issues and so on, and not just Lyme and co-infections. They seem to think these conditions are interconnected, but as a layman it is often hard to understand how, and it can come across across as guesses and hypotheses more than settled science. One of the doctors described Lyme as the battering ram that destroys the gates and the other illnesses as the army that then invades. He seemed to be of the opinion that Lyme is at the bottom of a lot of chronic illness, even in people without clear tick bites, which I found hard to believe.

Long story short: I was mild-to-moderate before undertaking these treatments, now I am severe. However, I cannot say if it was due to the treatments themselves. But I do think taking so many medications, including antibiotics, for such a long time has the potential to really worsen your ME.

If anyone wants me to, I can try elaborating on specific treatment protocols (such as which herbs I used), but I didn't want to clutter this message with too much info.
 
ILoveBees said:
Long story short: I was mild-to-moderate before undertaking these treatments, now I am severe. However, I cannot say if it was due to the treatments themselves. But I do think taking so many medications, including antibiotics, for such a long time has the potential to really worsen your ME.
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My best friend did all the treatments for "Lyme' , including wearing a PICC for 9 months. He concluded years later that after spending a tremendous amount of money that he never had Lyme. He got severely worse and passed away in 2016 from ME complications.
 
Mij said:
My best friend did all the treatments for "Lyme' , including wearing a PICC for 9 months. He concluded years later that after spending a tremendous amount of money that he never had Lyme. He got severely worse and passed away in 2016 from ME complications.
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Goddamn. Really sorry to hear that. May he rest in peace.

I often fear I have done similar (though not as severe) damage to myself with all of these treatments.

It's really hard to figure out what the correct course of action is, though, with all this talk of infections/viruses being drivers in ME/CFS.
 
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