You should add "in Kennett Square, PA" in your title, so people will know specifically where you are looking. To do this, click the pencil/paper icon, make your changes, then click "Edit Post".
Also, write a new post in "Medical Questions" to ask about ataxia. It's possible Lyme may cause it, because the bacteria which cause Lyme, Borrelia burgdorferi, do cross the blood/brain barrier.
You need 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. You need to go where they are.
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":
Btw - I know you are new to Lymenet, but you should not use your real name, because this is a public forum with all sorts of people on it. Read this link about it:
"Some common symptoms include blurred vision, numbness in the extremities, memory loss, balance problems, headaches, ATAXIA (unsteady gait), and tremor."
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Check the lyme support groups in Pa. See Support Groups on the left side of the page. There is one in Kennett Square. Here is their info page:
They can tell you if there are any good doctors in your area.
Over 12 years ago, I traveled to Kennett Square for a lyme group meeting put on by this lyme support group. They had the famous Dr. Joseph Burrascano as a guest speaker. I will never forget it because it helped me so much in my personal search for a good lyme doctor.
Since good lyme docs are few and far between, be willing to travel to get someone good. I recommend a doctor near Washington, D.C. If you want the name, let me know. You only have to appear in person once every 3 months. You can do telephone or Skype appointments the other months.
Thanks to Dr. Burrascano that day in Kennett Square, I switched to a doctor who knew enough to get me well. I completed my lyme treatment over 11 years ago now (getting close to 12 years) and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease, and I went undiagnosed for at least 10 years.
The message is: The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough. Get to the very best lyme doctor you can afford. That gives you the best chance for a good outcome.
Many doctors treat lyme disease, but only a very few know enough to get rid of it for someone. You want to find one of those very few lyme docs.
Lyme is extremely difficult to get rid of. It is actually a number of diseases. Read and STUDY the Burrascano Lyme Treatment Guidelines found 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.
With this disease, there is no substitute for an educated patient. It will help you understand what the doctor is talking about, and it will help you evaluate any treatment you are given.
This way, you will recognized lousy lyme treatment and move on. There is no standard treatment for lyme, so docs are free to treat any way they want.
By educating yourself, you will "know when to hold 'em and know when to fold em." Don't be afraid to move on if the first doc you pick turns out not to be the one.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Another source...
If you go to www.MarylandLyme.org and look at the menu on your left you will see DOCTOR REFERRALS.
You can find Lyme treating health care professionals there, listed by state and country. It also has links to help find alternative doctors, chiropractors, specialists in Morgellons and MTHFR.
The Lyme Doc site also has a listing for good labs, links to find a naturopathic doctor, acupuncture and oriental medicine doctors too.
Holistic dentists, experts in mold, and even places to avoid are listed there.
BTW- Dr. B's guidelines do NOT say you must use IGeneX lab, although they are good.
Here is a "Help For You" page that, if needed, can help with the cost of labs, provide free or reduced priced medications, grants to assist those under 25 with Lyme related costs, free cell phones and more.
The SE PA Lyme Disease Association is absolutely wonderful in helping patients and they've been doing so for many years. They usually have monthly meetings in Kennett Square, PA.
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