posted
Not sure if this is the right spot for this question. If not, please advise.
When I call a doctor office to make appt, can I verify with them that they are an LLMD before making the appt?
How much info can I get from them via phone regarding their process of diagnosing and treating Lyme?
I would want to make sure that they are willing to treat long term before we wait so long and .travel so far.
How much info do I give them about my sons condition during the appt making process?
I mean, can I just ask straight out if they are an LLMD and if they treat Lyme long term?
Thank you.
Posts: 2 | From Minnesota | Registered: Aug 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You can call and ask those things, but I expect that you will probably get the answers you want to hear rather than the truth.
For example, people call lyme doctors and ask if they follow Burrascano. The staff will say "yes" or "yes, pretty much" or other responses because the caller wants to hear a Yes.
In fact, the doc's staff is just SAYING that the doc follows Burrascano because that gets him more patients.
So, you really need to investigate the doctor by asking on places like LymeNet and other lyme forums, calling or emailing lyme support groups (see Support Groups on left side of page), doing a Goggle search for the doctor's name and reading patient comments on the sites that come up, trying to find talks on YouTube that the doctor may have given, etc..
If the doc has written any books or articles, look at the books/articles. There is also a book written about lyme doctors that interviews 13 lyme doctors and tells you their approach to treating lyme. It is called "Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies" by Connie Strasheim.
One lyme doc writes a blog, so you can learn all about his lyme knowledge that way. Some lyme docs are interviewed by local newspapers and you can see the articles on line.
In other words, it is much better to research the person and get patient input. And, you want recent input because some doctors "go bad." Then, people go to them due to their reputation and endure much frustration and waste lots of time and money.
Minnesota has a lyme organization, so contact them about the doctor. It is called Minnesota Lyme Association. http://mnlyme.org/
If you go to a local lyme support group meeting, you can ask everyone there about their doctors and the doctors you are considering. You can learn an awful lot by going to a meeting when they have a lyme doc as a guest speaker. That really did it for me. I heard Dr. Burrascano speak and it opened my eyes. Be willing to drive a couple of hours to attend a meeting with a good speaker.
In other words, there is an important lyme doctor learning curve. You have to learn who is good and who isn't in your area and your part of the country, and you have to learn enough about lyme treatment to know what kind of treatment you want.
There is no set treatment for lyme disease. So, some docs use only herbs and supplements. Some believe in giving only very low dose antibiotics. Some will not give cyst busters. Some won't bother with coinfections (which dooms the patient to never getting well). etc.
Once I studied the Burrascano Lyme Treatment Guidelines and traveled to hear Burrascano speak, I KNEW that I wanted a doc who did everything Burrascano said to do.
I contacted another lyme support group and asked for a Burrascano type doctor. That is when I got well. Then, I sent at least 5 of my friends to docs who followed that protocol, and they all also got well. That is why I believe in the Burrascano protocol and I only recommend doctors who follow it. It is here:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has(including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
Just want to let you know that it is not easy to find a doctor who follows this protocol. It takes courage on the doctor's part because doing so can expose him to harassment by the state medical board due to long-term antibiotic use.
With this disease, it really pays to become an educated patient/parent. Otherwise, you can wander in the lyme wilderness for a very long time. I stick around LymeNet just to point people to the best doctors on the east coast. Sorry I don't know the docs in your area.
I was cured over 11 years ago. I remember being in your position. I wasted 2 years with a lousy so-called lyme doctor recommended to me by a lyme support group leader. So, don't get just one person's opinion. Get as many as you can.
If you want patient input on a particular doctor, here on LymeNet we allow you to give the first letter of the doctor's last name and the state (but NOT the city) in which the doctor is located.
So, for example, you could write a post entitled "Need input on Dr. T in Minnesota." Does he treat long-term, does he diagnose clinically, what is his approach to treating lyme and coinfections?
Then, folks on here will know who you are talking about and will write to you privately with what they know about him.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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