posted
I'm at Land O Lakes, FL 34637, and am looking for a good LLMD for my 26 year old son, who has chronic lyme disease, which had gone un-diagnosed for over 10 years.
Thanks.
Posts: 5 | From Land O Lakes, Florida 34637 | Registered: Jul 2017
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posted
Welcome to Lymenet! PM sent for FL, MD & DC.
Your son needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. He needs to go where they are. There was a good one in Tampa, but he retired.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
posted
Thanks! Will look.
Posts: 5 | From Land O Lakes, Florida 34637 | Registered: Jul 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hey, Musical, be sure to take seriously the statement above the list of Florida docs which says "Inclusion on this list is not an endorsement or recommendation of any of the health care professionals."
Be sure to do a lot of research into any doc before you lay out the big bucks. Get input from people who have tried the doc. You can do that through lyme support groups (see Support Groups on the left side of the page), or even on LymeNet by giving the first letter of the doc's last name and the state of Florida.
There is one doc on the Florida list that I urge everyone to stay away from. He is the most hated lyme doctor in the U.S. So, just beware that a list of names is just a starting point for your extensive research.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I am researching a Dr. M about half hour drive away from me in the Tampa area. He has a wellness center with multiple doctors and a number of Youtube videos on how he treats Lyme. Any feedback on him?
Posts: 5 | From Land O Lakes, Florida 34637 | Registered: Jul 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Please know that there is no set way to treat lyme disease. So, doctors who follow the Burrascano protocol use antibiotics. Other doctors use herbs, etc.
Before you go to the Wellness Center, you need to find out how they treat lyme. I watched their 6 minute video called "Antibiotics for Lyme Disease." In that video, Dr. M says that antibiotics only work for very early cases of lyme. Since your son has had it 10 years, Dr. M will treat him with herbs, nutrition, vitamins and minerals, and ozone which he calls "nature's cure."
So, now that you know this, you have to decide if this is how you believe lyme is cured.
I believe it takes high-dose combinations of antibiotics like what is recommended in the Burrascano protocol. I had undiagnosed lyme and babesiosis and bartonella for at least 10 years before a doc figured out what was wrong with me.
I got well only when I switched to a lyme specialist who treated the Burrascano way--exactly how Burrascano says to treat lyme, babesiosis, and bartonella.
I was symptom free in 8 months and finished with treatment in 13 months.
Then, I sent at least 5 of my friends to docs who followed Burrascano. They all got rid of their disease also. Some had been sick for 30 years, 20 years, 3 years, etc.
So, this is why I believe in the Burrascano protocol--because I have seen it work over and over again. I traveled to hear Burrascano speak and realized the expertise he had compared to the doctors that I had seen for lyme.
The man was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
So, if you want his treatment, know that you will not get it at this Wellness Center. You will get herbs in place of antibiotics and a lot of good stuff that Burrascano also recommends (like vitamin D, magnesium, etc.)
So, now you know how to evaluate any doctor. Decide how you believe lyme should be treated an then find out if that doc believes the way you believe.
I don't know of any Burrascano type doctors in Florida. Such docs are hard to find. But, there is a top notch one in Washington, D.C. who just opened her practice back up to new patients. She hadn't taken any new patients for nearly 3 years.
She only requires in-person visits once every 6 months. The other months, you have telephone appointments with the doctor. So, you would not have to travel much at all to see her.
She is not an average or good lyme doc--no. She is at the top along with just one or 2 other lyme docs. She is a class act.
The Burrascano protocol is a 4-pronged approach to the disease:
1. antibiotics to kill the germs
2. supplements (Vit. D, magnesium, and many more) to restore what the germs have depleted in the body
3. a certain diet (a healthy diet that discourages candida which can result from antibiotics), and
4. one continuous hour of weightlifting to restore the immune system to normal (done every other day; light weights and many repetitions; a full body workout each time)
So, this Wellness Center will give you the supplements, often by IV (the absolute most expensive way to get them. Burrascano has you buy good quality supplements which are generally not expensive. So, the Wellness Center is following Burrascano here but soaking the customer in the process.)
It sounds like they will also treat you for high levels of heavy metals (which some patients have.) A good Burrascano doc will do this also if you test high on heavy metals. You don't need lyme doc to get your metals down.
The Wellness Center mentioned parasite treatments also. Lyme docs do this also or will send you to a naturopath or other practitioner for it. You can read books that recommend various parasite cleanses and do them on your own at minimal cost, if you test positive for parasites or believe you have them.
The Wellness Centers give you a lot of personal attention and charge you very high prices to do these things. This one is also emphasizing ozone treatments as "nature's cure." So, before going there, find out if you believe ozone will cure lyme. I don't know anyone cured that way.
The ozone is evidently used to build the immune system back up. Burrascano tells you to do that with the weightlifting done exactly as he tells you to do it.
The weightlifting is ESSENTIAL. My Burrascano type doc told me this at the first appointment. I did it myself at home with the help of my husband and his weight bench. I didn't pay anybody anything to do this. It is what restored my immune system to normal so that I NEVER relapsed after treatment. It has been over 12 years now.
You must restore your immune system to get rid of lyme. Lyme compromises your immune system like AIDS.
So, in my opinion, this place will help you in the peripheral things but it is counting on herbs and ozone to cure you. I don't believe it will happen that way. I believe that high-dose combinations of antibiotics (the Burrascano way) are the most successful way to a cure.
If your son has already tried the Burrascano protocol and it has failed him, then you may want to explore herbs and ozone. But, I advise everyone to try the Burrascano approach first as it has been the most successful protocol to date.
Dr. H and the other top lyme specialists all use the high-dose antibiotic combinations to cure. They may add in herbs after so long and eventually end with just herbs. But, they use antibiotics at first because these germs are so virulent.
They use all the other things Burrascano says to use that the Wellness Center is using also except for the ozone.
I hope you can see now that it takes an educated patient to know how to pick a good lyme doctor.
If you want the info on the Washington, D.C. doc, let me know. Then, your search would be over.
I always advise everyone to go to the absolute best lyme specialist they can possibly afford. This doc would fit the bill.
The Wellness Centers are NOT lyme specialists. They will treat anybody who is unwell--from cancer, to overweight, to "I don't know what is wrong with me" etc. So, they have not developed a great deal of expertise in treating lyme.
Have you perhaps followed the woman with lyme who was on Real Housewives of Beverly Hills? Yolanda Foster. It seems to me that she went to a Wellness Center in Florida and paid the big bucks and did not get cured that way.
A friend of mine with lots of money went to one in Arizona and told me all about it. They detoxify you a lot. They do everything for you so that you don't have to read about how to do these things or go out and buy the products yourself. They give the supplements to you in the proper amounts, etc. all in a very pampering environment usually.
So, for that reason, the cost is always very high. It's like the cruise ship version of lyme treatment without the antibiotics!
Instead, I recommend going to a doctor's office and getting prescriptions and instructions from the doctor on medicines, supplements, diet, and exercise.
This doesn't cost that much and it isn't that much to learn. Do it yourself and just pay for a monthly doctor visit. That is what the vast majority of lyme patients do. I have never met a lyme patient who got well at a Wellness Center and I have been in the lyme world for 15 years now.
It is essential reading to get your education on this disease. With this complex illness, there is no substitute for an educated patient.
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 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 (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 specialty 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. 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. Read it in his Guidelines.
This is important. You don't want to waste time and money on an ineffective treatment plan.
Many of us wasted months and years with doctors who did not know enough to get us well and gave us ineffective treatment.
In your son's case, I believe that there are likely just a handful of lyme specialists who could handle his case and get him to wellness. None of the ones I know are in Florida.
At least half of all lyme patients go out of state for their medical care, and many fly. So, it is the norm since there are so few good lyme doctors.
A lyme specialist sees just lyme patients all day long, every day. That is how a doc develops a high level of expertise in this hard to treat disease.
So, when you look at a doctor's website, now you know what to look for.
Don't pick a lyme doctor based on who is closest to your house. That rarely RARELY works! Instead, because lyme is so difficult to cure, pick a doc based on expertise and the treatment that you believe cures lyme disease, and then travel to that expert for your treatment.
Let us know if we can help you further.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks so much. As I was researching further today, I was also becoming not so comfortable due to various comments on review groups on that practice.
You make good points about looking for the best doctor, even if we have to travel out of state. I have read through the Burruscano protocols and it makes a lot of sense.
Can you let me know who the D.C. area doctor is? Is she the one who treated you originally?
Thanks again for your kindness.
Posts: 5 | From Land O Lakes, Florida 34637 | Registered: Jul 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
TF said...
"Here are a few points from Dr. B's guidelines...
You must use Igenex for most of these tests--they are a tick-borne disease specialty lab in Calif."
PLEASE show me where Dr. B says you must use IGeneX labs.
If you can't find it in his guidelines, please remove it from your copy and paste info. Thanks!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
TF said... "Hey, Musical, be sure to take seriously the statement above the list of Florida docs which says "Inclusion on this list is not an endorsement or recommendation of any of the health care professionals."
FYI- That disclaimer is on every page that has doctor's contact info. It is a standard disclaimer that can be found on most if not all doctor (and other) referral sites.
Please TF, stop trashing ALL doctors treating Lyme below the Mason Dixon line except the two you recommend are God-like and can do no wrong.
Not ALL doctors in FL are bad. Not ALL doctors in NC, SC, MD, VA, etc, are bad. Saying they are is a dis-service to them, the patients they've treated successfully and it seriously diminishes your credibility.
Those two doctors are loved by some, hated by others, just like what happens with ALL doctors, so please try to fairly represent them all.
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