Madison Area Lyme Support Group

Recently Lymedisease.org came out with this:  https://www.lymedisease.org/2018-lyme-disease-resource-list/ and within this link you can find out numerous things including a symptom checklist, the ability to purchase an informative quarterly journal they put out, find their Facebook and Twitter accounts, online support groups and sign up for a free newsletter.  All of that is dandy.

What isn’t dandy is the physician directory they offer.

Here’s why.

Lyme/MSIDS is a political hotbed – particularly for physicians and practitioners.  State medical boards have come after these folk (think witch hunt) for prescribing outside the CDC guidelines (which essentially state 21 days of doxycyline will cure you) and then descend upon them like the Spanish Inquisition.  Many doctors have lost their license to practice in this way.  

You’d think with all of the people getting infected that this would change.  But it hasn’t.  

The problem with a static list created by folks not in your state is the list of doctors is forever influx.  As I look at the list for my state of Wisconsin, there’s folks on there I haven’t even heard of, and that’s not good as I’m heavily involved in the vetting process of obtaining the necessary information making sure the doctors on our list are properly trained by ILADS.  There’s also many more doctors properly trained who aren’t on their list at all.

Why ILADS?  Glad you asked.

At this point in the game, there are two sides to the Lyme/MSIDS Wars: 

1. CDC/NIH/IDSA camp that believes Lyme is hard to catch and simple to treat with 21 days of doxy.  If you have symptoms after that they believe it’s something other than Lyme and are likely to give you an anti-depressant.  They deny persistent/chronic infection and believe there’s only between 10-20% of us out here who suffer with symptoms after treatment.  They call this PTLDS (of unknown cause) – but they state emphatically isn’t due to a persistent infection.  They also aren’t factoring in coinfections at all.  They treat you with a one drug for one pathogen paradigm, which only works on acute cases and even then sometimes doesn’t work.  Also, due to the disbelief in persistence, their treatment times are extremely short.  All of their studies are of short duration on antibiotic usage with virtually little to no follow-up  – rigged from the get-go for those of us with chronic symptoms.
2. ILADS camp looks at animal studies proving persistent/chronic infection and extrapolates that out to humans.  They believe this is a complex illness with a lot of moving pieces and parts which requires a clinical diagnosis and treatment regimen, specifically designed to the individual.  They take coinfections into account and treat accordingly with whatever drugs are necessary to get the job done.  They also treat longer as the understand how these pathogens work symbiotically to modulate the immune system making our cases tougher.  Depending upon the case, treatment could go from weeks to life-long as each case varies tremendously.  They also understand many of these pathogens are spread congenitally, via breast milk, and even sexually and treat accordingly.  They also understand the immune system component but that often the infection is driving it.

All of that to say this:  If they are not ILADS trained, there is NO WAY we can insure they are properly educated to treat this monster.

Where should you go to find educated doctors?

I highly recommend you contact your local Lyme support Group for this information.  These are the folks with boots on the ground experience in your state who are familiar, or can point you to someone with accurate and up to date information on how to find a properly trained doctor.  In the state of Wisconsin, Wisconsin Lyme Network (WLN) http://wisconsinlymenetwork.org/ is your go-to source for the trained doctor list as well as other valuable information.  They are actively involved in raising funds/accepting donations to get Wisconsin doctors properly trained, raise awareness, provide education and support, and promote research for vector-borne illnesses to patients, medical community and  the general Wisconsin population.  Check to see if your state has such an organization that serves as a clearinghouse of vetted information, particularly on doctors.

Local support groups will be able to help you with costs, treatment style, and nuances that are indispensable such as:

1. Treatment style.  Believe it or not there is a wide girth of treatment styles even within ILADS. (this is important as one physician in Wisconsin uses primarily ozone which requires weekly treatments in-house, requiring a long drive for many)
2. How long it takes to get an appointment
3. How often you must be seen
4. How they handle complications
5. Whether they are good at returning phone calls or not
6. If the office staff is rude
7. If they do in-house blood work
8. If they accept insurance
9. If they have supplements in house for purchase
10. If they have adjunctive treatments they offer (this is important because often you have to be a patient to use these.  For instance if you wanted to try ozone, chelation, hyperbaric, or Biomat, if you are not their patient, you probably would have to pay a “new patient” fee to utilize their service.)

Those are just things off the top of my head but there are probably 1,000 more details such as this that you will be able to query your local support group for or even discover important questions to ask.  These groups really are indispensable FREE reservoirs of information that you should take advantage of.

Why is this important?

Personally, I remember when I started this journey riddled with pot-holes.  I had symptoms that nearly led me to the ER, I knew nothing about what I’m telling you now, and had to essentially reinvent the wheel.  That is not fun when you can’t remember words and forget why you walked into a room.

Thankfully, I had presence of mind enough to email my local support group which taught me a number of these things in short order, giving me the cherished and coveted list of Lyme-literate doctors for my state so at least I could make somewhat of an educated guess.  Looking back, I wish I would have gone to group in person to ask more questions as it would have been even more helpful to understand costs, regimens, and the personality of the offices and doctors involved.  **Caveat** Please keep in mind some folks might have had a negative experience with a certain doctor.  Try to balance all opinions and in the end, make sure to ask the support group leader’s opinion as typically they are experienced or can point you to someone who is to bounce all the feedback onto.  Sometimes the negative experience isn’t even the doctor’s fault but a misunderstanding or even due to the patient himself.  To say patients can be psychologically impaired at times which can affect our judgment would be an understatement.

Since treatment is often years long, you want to find someone that works with you.  These doctors, bless them, are often mavericks of one sort or another as it takes special people to deal with the likes of us and handle the inherent risks of the political issue and the polarization of the medical community.  These are stand-alone individuals who have defied convention and that often leads to some interesting personality-types.

On top of this, issues such as convenience can become important as treatment is often long & complex, so having the ability to get blood work done in house, purchase supplements in one stop, and have access to adjunctive treatments can really simplify life which has already been made extremely complex due to this illness.

And lastly, don’t feel badly if at some point you need to change doctors or even have numerous ones.  Since this complex illness can and often affects the entire body, it’s nearly impossible for ONE practitioner to be able to handle it all.  You might very well need someone experienced with diet and nutrition on top of a Lyme literate doctor, as well as a physical therapist, chiropractor, psychiatrist, and more.  Everyone is entirely different.