This is topic Confirmed Lyme...Where do I go from here? in forum Medical Questions at LymeNet Flash.

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Posted by kfamilyofeight (Member # 42384) on :
Today I received my IGENEX results at my doctor's office. I am positive by IGENEX standards, as well as CDC standards. The relief we are feeling to finally have a name to my illness is overwhelming! We are so thankful!

But, now begins the tricky treatment. My doctor was very honest and said that Lyme can be very frustrating for the patient as well as the doctor. He suggested looking for a LLMD, but that they are very hard to find in our area.

He said that he has had some success in treating Lyme patients with 6-8 treatments of Photo Luminessence and also doing a monthly shot of Penicillin for 6-12 months. He wanted to make sure that I understood that there are no guarantees in these treatments, though.

Has anyone else tried these therapies and had success? Any comments would be greatly appreciated!
Posted by Lymetoo (Member # 743) on :
Do you mind if I move this to Medical Questions? I want you to get the most help!!

I'm glad you finally have some answers!!
Posted by kfamilyofeight (Member # 42384) on :
Yes, of course! Thank you...I want to get the most help too! [Wink]
Posted by Brinkley929 (Member # 43812) on :
Hi Kfamilyofeight!

I can't give you any helpful information, because I don't know anything either and was just officially diagnosed just like you. But, I just wanted to say hi and hopefully we will both learn a lot and can share with each other!

I feel the same relief as you, but also a little nervous about what lies ahead.

Everything on this site has been so helpful and I've only been on a few days. I'm so thankful for a place to come for support and good information [Smile]
Posted by TF (Member # 14183) on :
You need a lyme doctor. This is a doctor who treats lyme disease patients exclusively or nearly exclusively.

It is extremely difficult to get rid of lyme disease, so you go for expertise. A doctor develops expertise with lyme disease by treating it all the time.

Find a doctor who is curing people of lyme disease. Many doctors treat lyme, but very few know enough to get rid of it for people. I know a few such doctors.

Forget the treatment that this doctor is offering. If "6-8 treatments of Photo Luminessence and also doing a monthly shot of Penicillin for 6-12 months" did the trick, we would all be well and we would not need LYmeNet.

Find a doctor who follows the Burrascano protocol. The document is here:

Read and STUDY it to get your education on this disease and what good lyme treatment looks like.

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 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 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). (See page 18 for dosages. For example, 6 grams of amoxicillin per day--that's 6,000 mg per day--plus other antibiotics with it. That is how I got well.)

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 a certain type of exercise (one continuous hour of weightlifting--no aerobics) 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.

Be willing to travel to see a good doctor. There are very few good lyme doctors south of Washington, D.C. here on the east coast.

I had undiagnosed lyme disease (plus babesiosis and bartonella) for at least 10 years before a doctor figured out what was wrong with me.

I wasted 2 years with 2 lyme doctors who did not know enough to cure me. Then, I studied the Burrascano Guidelines, traveled to hear Burrascano speak, asked him a question about my case, and I knew that my treatment was inadequate.

I then contacted my state lyme support groups (see "Support Groups" on left side of page) and asked for a lyme doctor who followed the Burrascano protocol. I switched doctors and I was finished with treatment in 13 months.

That was 9 years ago, and I am still cured of lyme disease. I sent 5 of my friends to Burrascano type doctors and they all got well also.

I stick around LYmeNet just to help people through the lyme doctor learning curve.

So, educate yourself on what good lyme treatment looks like. Don't waste time and money on other things. You will need all of your money for good lyme treatment.

Most good lyme doctors have long waiting lists or are not taking new patients. I can give you the name of one near D.C. who can see you in a week or 2 right now. He follows Burrascano. Let me know if you want the name.
Posted by Judie (Member # 38323) on :
What's Photo Luminessence? I tried looking it up. Is it Reiki and crystals?

Personally, I don't think it will touch Lyme because you're dealing with an infection.

I'd find a Lyme specialist to work with if I were you.
Posted by derk diggler (Member # 31903) on :
relieved to hear you have lyme? check back in, in 6 months, sorry for your diagnoses
Posted by Robin123 (Member # 9197) on :
Derk, I had the same reaction - I was so happy to get a diagnosis and end the loooong search for answers. So I think it's a fair feeling in the beginning.
Posted by Brinkley929 (Member # 43812) on :
kfamily…I very much understand the "relieved" feeling to get a diagnosis.

It's not that you want Lyme and are relieved to have it, but after searching for answers and being told it's "in your head" for so long, when you finally know what's wrong there is a sense of relief.

I feel that way too, although I know it's not a good thing. But at least you don't wonder anymore what is wrong, you KNOW.
Posted by TF (Member # 14183) on :
Right. Getting the diagnosis is the essential first step to getting well.

Without a correct diagnosis, you go nowhere.

So, there is a lot of relief when you finally find out it is lyme disease. I considered it an answer to prayer. Now, there was hope for getting help, feeling better, etc.

And, eventually, after I got a good doctor, I got cured!!
Posted by derk diggler (Member # 31903) on :
to the bar!!! and get drunk,, your in for one hell of a ride, welcome
Posted by Brinkley929 (Member # 43812) on :
TF, thanks for the inspiration [Smile]

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