posted
I live in Davis county, Utah and am having the hardest time finding an infectious disease doctor who even treats Lyme, let alone Chronic Lyme. Does anybody know of a doctor who treats it? I have talked to a holistic doctor but want another opinion from a medical doctor as well. Thanks in advance!!
Posts: 12 | From Utah | Registered: Jun 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Infectious disease doctors are generally (nearly always) enemies of lyme patients. They believe that lyme is RARE and EASILY treated. They were taught this by the Infectious Diseases Society of America, to whom they report.
So, if you go to one, they most likely will say you do NOT have lyme. And, if they say you have it, they will give you doxycycline for 30 days and declare you cured.
So, you want to find a medical doctor who does NOT believe this way. We call these docs lyme literate medical doctors. The best is one whose entire practice is just lyme disease and its coinfections.
The easiest way to find one is to contact the lyme support groups in your state or nearby states. See Support Groups on the left side of this page.
I noticed that Utah used to have a support group, but we have no recent contact info for them. So, try other surrounding states.
I tried some of these states and it definitely appears that you are in an area of the country where few lyme support groups exist and likely few lyme specialists also.
The one I knew out west has retired. Here are a few articles about him. He was in Colorado Springs.
So, if you don't know about the "war" that has gone on in the medical community regarding lyme disease for the last 30 years, the second article gives you a flavor for it.
For example, Texas drives out any doctor who treats lyme properly. Right now, there is basically only one doctor in all of Texas who will treat lyme long-term as is necessary to get rid of it.
Because of this sorry state of affairs, you may have to travel to California or come east for good lyme treatment. Lyme docs are used to their patients traveling a far distance to see them. They do telephone appointments most months with out-of-state patients so that they do not have to fly to the doctor's office every month.
To get your education on what GOOD lyme treatment looks like, I strongly suggest you read and STUDY the Burrascano Lyme Treatment Guidelines found here:
I got rid of lyme (and babesiosis and bartonella) by going to a doctor who followed the Burrascano Guidelines. That was over 12 1/2 years ago.
Then, I sent at least 5 of my friends to such doctors and they also got rid of their lyme.
When Burrascano was practicing, he was the most successful lyme doctor in the world. They came from every country to see him.
Here are a few points from Dr. B's guidelines:
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 (or another good "reference laboratory"--not Quest or LabCorp) 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.
The exercise must be one continuous hour of weightlifting every OTHER day--light weights and numerous repetitions. A full body workout each time. This eventually restores your immune system which has been compromised by lyme just like with AIDS (if you have had it at least a year).
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.
Although I went undiagnosed for at least 10 years, once I switched to a Burrascano type doctor, I got well. So, with good treatment, there is hope.
Do not ignore the weightlifting requirement. This is essential and will keep you from relapsing once you stop treatment.
You may want to contact the very large Calif. Lyme Disease Assn which is now called Lymedisease.org and it is also their website.
They may have info regarding doctors for you. I know there are lyme doctors in California.
Hopefully, others will come along to provide you with additional help.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, do not expect a lyme doctor to take insurance. Most do not because the insurance company does not recognize how time-consuming and difficult it is to treat a lyme patient. They treat lyme like any other routine office visit, which it certainly is not.
The doc would lose money if he took insurance payments as his reimbursement.
The first visit with a lyme doctor is generally at least an hour. Take a complete list of your symptoms to that appointment as the diagnosis is largely based on symptoms.
See pages 9-11 of Burrascano for a list of symptoms. This can help you make your list. Do not forget to include mental and emotional symptoms also as lyme affects the brain and emotions.
Read about the various coinfections that come with lyme and read the symptoms of each (pages 22 -27). Include any of those symptoms that you have also.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Answersplease, I'm so sorry you are dealing with this. I have a lot of family in Utah.
I know one of my mom's friends is being treated for Chronic lyme by a Dr. in Provo. I'll see if I can find the name for you.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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BTW, TF is amazing at helping find good dr.'s. She is awesome to stick around here and help us.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
Contact them for some help in finding a doctor and also finding out how Utah stands in regard to lyme disease.
Peruse the entire site.
Under "Stories" I found a very informative quote:
"Update: A recent member of our Lyme group found an Infectious Disease doctor in California whose daughter has Lyme Disease. I contacted his office and he told me that people in higher elevations like Utah, all the way even to Minnesota, seem to have the strain Borrelia Hermsii. We had Mark tested and he was CDC positive for it. The common name for B. Hermsii is TBRF – Tick-Borne Relapsing Fever. Mark got this at LDS Cub Scout Camp, Utah!"
posted
Thank you so very much for all that information. I have heard about this war on lyme doctors but I am starting to realize just how bad it is.
I keep coming across “a doctor in Provo” is it a naturopathic doctor? I am not supposed to use names right? I think she might be my best bet but if I follow the plan you were talking about I would need antibiotics..
I am so glad you were able to get better. I hope I will too but it’s been discouraging trying to find a doctor. Nobody will see me either because they don’t accept my insurance or they don’t treat Lyme or they only see people with acute infections. I will definitely look into everything you told me. Thank you so much.
Posts: 12 | From Utah | Registered: Jun 2017
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posted
You are amazing. Thank you for looking into all of this for me!! I tested through igenex but not that specific test. I will need to do that now as well!
Posts: 12 | From Utah | Registered: Jun 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Whatever lyme specialist you see, he must be familiar with the various diseases lyme patients in your state often get.
Notice that the Utah Lyme Disease Alliance says that Q Fever is very common in Utah. Also, there are Colorado Tick Fever, Tularemia, and Rocky Mountain Spotted Fever in your area.
So, the lyme coinfections mentioned in Burrascano are not the only ones that your doc needs to be aware of.
Here is a page that gives a little info on each of these diseases:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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