My Lyme story... and request for doctor recommendations

I'm incredibly happy to have discovered this forum a few weeks ago. It's truly an amazing resource, and I don't even want to think about the prospect of facing a Lyme diagnosis without it. Thank you to everyone here who has devoted so much of their time to sharing their knowledge and experience in the hope of helping complete strangers who happen to share the same terrible affliction. I hope that eventually I'll be able to contribute in a meaningful way and "pay forward" the kindness that you guys have been demonstrating here for many years.

The TL;DR version is that doctors missed my diagnosis for years, and now I need a recommendation for a good LLMD

I've appreciated being able to read about other people's experiences, so I thought perhaps it was time to share a bit more about my own journey with Lyme - which unfortunately may just be beginning.

I've been exposed to ticks/Lyme for pretty much my entire life, so it's impossible to know precisely when I was infected. I grew up in New England and have always been drawn to outdoor activities (particularly hiking), and in spite of my awareness of Lyme from an early age, I was never particularly careful about preventing tick bites. This was likely due in part to the CDC's line about it being hard to catch, easy to treat, but also because I had two immediate family members who contracted it and appeared to recover fully after the standard course of doxycycline.

I first suspected I might have Lyme in 2011, after spending three months back in the US (I've lived abroad since 2004). I started having difficulty finding words and even developed a bit of a stutter. I found myself unable to finish sentences, and started forgetting basic grammatical rules. I also started getting headaches around this time - not severe, but unusual for me, and particularly worrisome in conjunction with my language difficulties.

I went to the doctor and was told that I was suffering from anxiety, which seemed plausible enough. They ran a series of tests to rule out other possibilities, and I was shocked to find I had an abnormal EKG reading. At the age of 27, my EKG indicated left ventricular hypertrophy. An echocardiogram showed no structural defects, but did result in the diagnosis of a mild arrhythmia, for which I was prescribed medication (I can't recall what it was all these years later). The unusually low (for my age and general physical condition) ejection fraction of 55% was disregarded.

For years I continued to have these unexplained abnormal EKG readings, which I now assume were attributable to Lyme.

My cognitive symptoms worsened over time, but I experienced episodic periods of clarity that convinced me the symptoms were psychological - as various doctors had claimed. In 2013 I insisted on an MRI, which revealed no abnormal findings. But still the symptoms persisted.

Somewhere along the line, I also developed chronic joint pain in my fingers - never debilitating, but again somewhat puzzling for a person in his late 20s/early 30s with no history of arthritis.

Through it all I suspected Lyme, but since I lived abroad it was very difficult to find any doctors that were even aware of its existence. Instead, I was routinely called a hypochondriac and my symptoms continued to be attributed to anxiety. I was placed on an antidepressant, which I took for years in spite of never exhibiting any symptoms of depression.

Fast forward to 2017, and my wife and I were on vacation in Scotland when found I found a tick on my leg. When we searched ourselves for ticks that evening, we found what appeared to be Lyme rash on my wife's calf - not the classic bullseye rash, but a solid red circle about 5 inches in diameter, with a clear bite in its center. We immediately suspected Lyme, but foolishly decided to wait until we returned home to get it checked out. We thought we would be laughed at if we suggested Lyme at a local clinic, since "officially" Lyme is not widespread in the UK.

For the rest of the trip, however, my wife experienced severe fatigue, falling asleep if we were in the car for more than a few minutes - very unusual for her.

Unfortunately, we were laughed at by our GP once we returned home, who had no idea what Lyme was. He was not convinced by the photo we'd taken of the rash, but dutifully hopped onto the CDC's website and prescribed her the standard 4 weeks of doxycycline. We both had Elisa tests done - twice, upon my insistence - but both times they came back "negative." We were not able to see the full results, just the interpretation.

My wife's severe fatigue did improve while taking the antibiotics, but I decided to be more proactive in our treatment. In August 2017 I came across Buhner's Healing Lyme and promptly put both of us on the expanded protocol, with additional herbs specifically for neuroborreliosis in light of my cognitive symptoms.

We both improved, my wife to the point that after about six months she decided to stop taking the herbs. I reached a plateau - I was better, but not completely healed, though thankfully I didn't seem to be getting any worse.

It's very tough to stay on Buhner's protocol, however, so I was a bit inconsistent. I traveled frequently, so would sometimes go 1-2 weeks without taking them. It was also difficult to get fresh herbs where I lived, so I wondered about the potency.

After about 8 months of somewhat inconsistent adherence to the protocol, I stopped taking it (April 2018). I continued to experience neurological symptoms, but overall I was definitely better off than when I'd started. I foolishly thought that, if I'd had Lyme, I had cured it. Perhaps any lingering symptoms were due to permanent damage.

In August 2018 I went on the keto diet and began to feel the best I'd felt in years. My cognitive symptoms faded (though never fully went away), my energy levels improved, and my joint pain diminished significantly. I wondered if perhaps my "Lyme" symptoms had in fact been due to food sensitivities, so eventually, in February 2019 I transitioned to carnivore.

Unfortunately, in March my symptoms started to return, and they steadily worsened. Still not as bad as pre-Buhner, but enough for me to realize that my issues were not due exclusively to food sensitivities. I knew that I was going to be in Berlin for a few days in June, so I found an LLMD there and schedule an appointment.

They conducted a number of tests, including the LTT for borrelia. Unfortunately, the doctor who ordered the tests promptly went on a 3-week vacation, and I have not heard from him sense. The clinic provided me with the result of the LTT, which indicated active infection for Borrelia Sensu Stricto (4.3), Afzelii (7.0), and Garinii (8.1), with a Borr. OspC of 11.0. (The high Garinii result certainly makes sense, given that my symptoms are predominantly neurological).

Unfortunately, I have not received any of the other test results, which looked at several possible co-infections based on my symptom picture. and the doctor is not responding to my emails. I know that they tested for mycoplasma, erlichia, Coxsackie, and chlamydia p., but I have no idea what the results were. They did not test for Babesia or Bartonella, which is somewhat disturbing knowing how common they are, and realizing now that I have exhibited classic symptoms for Babesia (air hunger, night sweats, and chills) off and on for years.

After getting the LTT Borrelia results, I resumed the Buhner protocol at full dose. I went through a week of somewhat brutal herxing, but appear to be improving now. My sleep quality (terrible for years, for unexplained reasons), seems to be slowly improving, and the brain fog has diminished. I've also started consuming (at least) one liter of cistus incanus tea daily, as per the doctor's recommendation, and it seems to help.

It's not enough, though. I now suspect that my previous experience with the Buhner protocol weakened my infection(s?), which enabled the sense of well being I achieved on keto. But the infection was still there, and something in Feb/March allowed it to flare up again.

So this time around, I want to find an LLMD and try to take it out with heavy antibiotics. I'm currently based in Saudi Arabia so will have to travel, so location is not really a concern (although Europe or eastern US would be preferred). I was hoping to see Dr. S. in Wilton, Connecticut, but I have no idea if he's currently accepting patients, or how long the wait list might be.

If anyone has any recommendations for a leading LLMD that's accepting patients, I would greatly, greatly appreciate it.

I also have made an appointment for my wife to have the LTT Borrelia test done in September (when we return to Berlin) to make sure she no longer has an active infection. Depending on her results, we might both be searching for an LLMD

Thank you all for support, and for continuing to make this forum the amazing resource that it is.

And sorry for the book-length post...

Hi Charlie. Thanks for responding - lots of information to digest here.

I agree with you 100% on keto being the way humans are supposed to eat. The difference between how I felt on the standard American diet versus how I feel now, on keto/carnivore, is profound, and I can't imagine going back.

I'm still primarily carnivore at this point, probably 90% beef, but I've reintroduced other low carb foods (like berries and avocados) in small quantities without any obvious side effects. I do generally avoid gluten-containing products, though I have to admit that lately I've started indulging in the occasional craft beer (which, surprisingly, doesn't kick me out ketosis). Probably a bad idea, I'm sure.

I'm following the developments with disulfiram with great interest, and it does seem like it'd be a good option. Some of the threads here indicate that herxing can be a major issue on the drug, but given the other properties that you mention (preserving the gut microbiome and crossing the BBB), I think it's worth a try. And if it's effective against babesia, all the better. I'm honestly considering just ordering it online and giving it a go, but that's obviously not ideal.

I'm not as familiar with dapsone but will definitely look into it. Same with minocycline.

Dr. J is a name that keeps popping up, and he's certainly on the shortlist of potential doctors. I'm not familiar with Dr. S but will try to find some info on Lymenet - thanks for the suggestions.

I'm definitely concerned that the doctor I saw didn't check for Bartonella or Babesia, but I'll look into the herbs you mention. I'm already on 30+ herbs/supplements, so a few more can't hurt

I think you're right that there are some excellent LLMDs in Germany, but it's not so easy to find them, and I only found two mentioned in Berlin, with mixed reviews. I think the guy I saw was okay for diagnostics (he ordered tests at IMD Berlin), but perhaps not so great for treatment. When I asked about potential treatment options while in his office, he simply suggested chlorella and cistus tea - both helpful, of course, but hardly sufficient in and of themselves.

Given my location, I need to find a doctor (or clinic) that is better at communicating by email. I'll probably only be able to travel every 3 months or so, so ideally I'd be able to find someone that's willing to communicate by email/phone while I'm away. My local GP, while ignorant of Lyme, has indicated he's willing to go along with whatever tests/medications are requested.

Do you think that's feasible? Or are most LLMDs going to want to see you on a more regular basis?

Thanks again for taking the time to reply - I really appreciate it.

Welcome to our forum!

I’ve just got a few minutes but wanted to let you know that I see Dr J in DC.
If you don’t live near the clinic - you can do phone appts in between in person visits.
I started at the clinic in feb 2018.
I travelled back again in August.
For 2019, I did an in person appt in March. My next in person appt will likely be in March 2020.
The rest were phone appts.
The appts start out closer together (2-3 months) and progress to 6 months apart.
If you choose him - don’t worry about testing for coinfections - his treatment covers lyme, Bartonella and Babesia.

Here’s an interview he did in 2017


https://m.youtube.com/watch?v=wde0l-5ykvi

You can email me and I’ll fill you in on appt costs, etc.

WalkingbyFaith said...

I do believe, though, that even those who were treated acutely and successfully (by appearances) are still vulnerable to relapse if their immune systems falter, as I don’t believe the bacteria is likely to be 100% eradicated. I also don’t think relapse is guaranteed if the immune system falters. Just like everyone who had chickenpox as a child doesn’t necessarily get chickenpox later in life when they are sick or old.

I tend to agree with this perspective. I think the research overwhelmingly shows that it's basically impossible to eradicate Lyme with short-term antibiotics, so the spirochetes are almost certainly lingering somewhere. In some cases the immune system may fully have it under control, but in others I wonder if the symptoms just haven't become more subtle.

My brother-in-law (not technically direct family, I suppose) seems to have made a full recovery, but he's relatively young and overall in very good health. My mother, on the other hand, says that she's fully recovered, but she routinely has short-term memory issues, and I notice her rewording sentences mid-stream when she can't find the word she was initially searching for - an adaptive strategy that I know all too well from years of employing it myself. If Lyme is the culprit, it's yet another instance of CDC/IDSA guidelines causing irreparable harm with their guidelines - she refuses to consider Lyme because her doctor assures her there's no such thing as chronic Lyme.

I do wonder though what percentage of people are able to recover with a 4-week course of antibiotics. I recall watching a lecture by Dr. P. (Wilton) in which he claims that most Lyme strains are quite weak, and most people's immune systems are able to deal with it. Are we just the unlucky outliers?

Re: acute lyme and treatment.


One of the issues for relapse is likely that some people who have acute lyme don’t actually get the appropriate treatment.

It should be 4 weeks for just a tick bite.

And with an EM and/or symptoms with acute lyme it should be treated until symptom free plus 4 (or is it 6?) weeks.

People often go to their regular md with a tick bite and are under treated.

“ You're obviously pleased with him if you're making the recommendation here, so I'm assuming you've seen significant progress under his care? Would you say that an end is in sight, or is it still too early?“

I am pleased with the clinic. There were some admin issues when I first started going but I was willing to overlook that - and it has improved.
Also the triage nurse line - they usually get back to you by the next day. It was previously a more delayed response.

I wouldn’t say significant progress - when I went there I had previously been with a LLND in my Province who had treated me for a couple years but when I plateaued he had nothing for me. He dodged the Babesia treatment and I found out later that as a ND he couldn’t prescribe Mepron or malarone. At that point I think I had resolved maybe 80% of my symptoms (have had 30 something symptoms)

Llmd’s aren’t available here in Canada so my option was to go to the US.
Hubby and I decided if I was going to travel over the border we were going to go to the best LLMD and my choice was DrJ.

I have improved some ... yes... my pulsatille tinnitus is completely gone now, my memory has improved some, I am physically stronger, but I still have a couple symptoms that are proving to be difficult b*ggers.
I do feel more confident that I can get completely well at the J clinic - where I didn’t with the previous LLND.

Lymewire said: “When I was there, we went over a proposed medication protocol, and dapsone and daraprim were not on it.

They also asked me to sign a thing swearing not to post medication schedules online. I'm starting to understand why Dr J was so upset about this. People are saying he prescribes daraprim and dapsone, and while that might be true in some cases, it's not what he typically starts off with.”

Did they give you all the proposed protocols for the next year or longer or just the first one?

Yes he does prescribe dapsone and daraprim - that doesn’t mean he does for everyone though - I’ve never said everyone goes on it. I’ve also seen someone’s protocol that had daraprim but not dapsone.

Some llmds do not prescribe dapsone or daraprim.. probably s high percentage don’t.

I never said he starts out with it.
Dr J treats Babesia first.
The Persister protocol comes later.

I talk about meds in my protocols but I don’t recall posting the entire protocol week by week.

Girlie said...
Did they give you all the proposed protocols for the next year or longer or just the first one?

Just the first one

Girlie said...
Dr J treats Babesia first.

Yes, mepron was in there. I haven't started it yet, need to find out if my insurance will cover it.

He rotates a lot of different abx. What happens if you have a bad reaction to one of them?

If you have a bad reaction - ie an allergy - call the triage line and let them know.

If it’s a herx - up your detox - if it’s really bad - you can call the triage and ask if you should skip a dose..

Girlie said...
Llmd’s aren’t available here in Canada so my option was to go to the US.
Hubby and I decided if I was going to travel over the border we were going to go to the best LLMD and my choice was DrJ.

That's basically my perspective. I have to travel a great distance anyway, so I may as well go to the best doctor I can find.

What made you choose Dr J over Dr P (Wilton)? Dr. P remains my preference, in spite of the admittedly high cost, but that's based primarily on the handful of YouTube lectures I can find. Dr. P claims to have "success" treating 97% of his patients:

"The vast majority of patients who get to me do get better. I haven't kept statistics in many years, but when I did, it was approximately 97%. But better is a relative term. Only a minority say they're 100% back to normal. I've been defining 'better' for my purposes as the patient reporting more than 90% back to normal."

Link: https://www.huffpost.com/entry/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660

Ordinarily, I'd be extremely skeptical of anyone making such bold claims, but given his background and reputation, I'm inclined to believe him.

Scroggins said...

Girlie said...
Llmd’s aren’t available here in Canada so my option was to go to the US.
Hubby and I decided if I was going to travel over the border we were going to go to the best LLMD and my choice was DrJ.

That's basically my perspective. I have to travel a great distance anyway, so I may as well go to the best doctor I can find.

What made you choose Dr J over Dr P (Wilton)? Dr. P remains my preference, in spite of the admittedly high cost, but that's based primarily on the handful of YouTube lectures I can find. Dr. P claims to have "success" treating 97% of his patients:

"The vast majority of patients who get to me do get better. I haven't kept statistics in many years, but when I did, it was approximately 97%. But better is a relative term. Only a minority say they're 100% back to normal. I've been defining 'better' for my purposes as the patient reporting more than 90% back to normal."

Link: https://www.huffpost.com/entry/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660

Ordinarily, I'd be extremely skeptical of anyone making such bold claims, but given his background and reputation, I'm inclined to believe him.

==========================

97% ?? Really?
Ummm... I doubt it. I would be skeptical.
Although if he’s talking 90% better then maybe - but going by number of symptoms resolved I’d prob be 90 % better but I certainly don’t feel it bcuz my remaining symptoms aren’t tolerable .

I think Dr J says 80% - he says the number would be higher if people didn’t stop too soon and stuck with it.
Dr J isn’t considering me 90% better - but maybe Dr P would.

I hadn’t considered Dr P because I hadn't really heard much about him until more recently. If I had, he may have been my second choice..... but I'm not liking this "97%" stats. He must have patients who give up on treatment...like the other LLMDs do. Does he not include them in his stats at all?
I had seen Dr J in the Under Our Skin videos and envied those patients who got to see him.
Then I watched some other videos I found on the internet and also read his medical history and just felt drawn to him.
His background - opened a clinic for hiv/aids patients prior to lyme and that’s when he devised the pulsing of medications - he transferred that idea to lyme treatment. He is also an Infectious Disease specialist.
He appeared knowledgeable, humble and compassionate.
I think he’s been bankrupt 3 times due to lawsuits but keeps coming back and hasn’t abandoned the cause.

So I finally received a reply from my doctor in Berlin. To his credit, he had responded last week, but the attachment triggered my spam filter so I didn't see it until today.

The tests indicated active Chlamydia Pneumoniae infection while Coxsackie, Mycoplasma and Ehrlichia were negative. However, he stressed that those tests were less sensitive than the LTT, so can't be used to definitely rule out infection.

My cursory reading today suggests that c. pneumoniae is addressed with many of the same treatments that take out Lyme, but I should add NAC to address the elementary body forms.

The doctor again had little to say about treatment - he merely stated that herbs are often more effective than antibiotics, and I need to bolster my immune system to get the infections under control. Not very helpful, unfortunately.