posted
What other coinfections have any of you been diagnosed with?
Symptoms I should be aware of that I might not know?
Chances of them being found?
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had lyme, babesiosis and bartonella. Virtually everyone in Maryland with lyme disease has all 3, and some people have more.
Since this trio is so common, some lyme doctors just routinely treat the patient for all 3. This way, they cover all the bases. If you don't treat every disease the patient has, the patient will not get well.
Tests for these diseases are not very reliable, so this is good practical approach.
As a patient, your job is to find the best lyme dcotor you can afford. If the doctor follows the Burrascano lyme treatment guidelines, he will know that anyone who has had lyme for over 1 year almost certainly has coinfections also. He will then test and treat you for them.
Why not read the Burrascano guidelines found here:
There is a section called "Sorting Out the Coinfections" that will help you distinguish one disease from another. The symptoms of the coinfections have an awful lot of overlap, but this section takes out the overlap. See page 25 and following.
Also, be sure to read the beginning of the section entitled "Coinfection" starting on page 4.
Reading these guidelines will give you an education on this complex disease and its coinfections.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
And then after you get the basics in the Burrascano guidleines...
asking about unlisted symptoms here can help too.
I discovered symptoms related to coinfections I had no idea were even symptoms when I saw it here and all the folks chiming in on one thing or another.
For example, hurty bumps on my scalp. Was told they were thyroid issues by health practioner and given supplements for that-- but not.
it was Bartonella when i saw someone on here talk about it. now that bartonella is being treated they have been gone a long time.
hurty bumps don't make or break my quality of life nor do little red dots on my skin here and there in the big picture
but they are a little part of the picture and help me to know what is happening.
Information helps you manage your recovery and wellbeing and not feel so ignorant and out of control.
Yes a lot to know but you will...
all the best
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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He has a section on each coinfection and that section includes testing information.
If you are with a lyme specialist, you will have coinfection testing--should be done at the first appointment. If it isn't, that is something for you to think about.
You shouldn't have to be telling your lyme doctor what tests to order. If you are doing that, you need a new doctor.
The doc is the key to getting rid of this disease. So, be sure you are with a doc who has treated lyme disease for years and years and has gotten many people well. Many doctors treat lyme disease, but not many know how to get a person well from it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
keepsmiling, I am concerned that you are not seeing a lyme specialist. This is based on the fact that you always say "the doctors" instead of "my doctor." A lyme specialist is one doctor and perhaps a physician's assistant.
If you have a team of doctors, it doesn't sound like you have found a lyme specialist.
You find a lyme specialist through lyme support groups (see "Support Groups" on left side of page), or through this site at the "Seeking a Doctor" forum, or by requesting a doctor's name through a lyme website such as ILADS.
If you did not get your doctors this way, you have a very, very slim chance that you actually have a lyme specialist. The most important thing you can do to be sure you get proper treatment is to request the names of some lyme doctors through one of the avenues I have mentioned.
Ask you doctors what they think of the Burrascano lyme treatment guidelines, and you will know right away if you are on the right track or not.
If you did not know, lyme disease is in the midst of a hot medical controversy. There are doctors on both sides of the controversy.
The doctors who are lyme specialists know that lyme is difficult to get rid of. The doctors on the other side think that 30 days of meds is all it takes to get rid of it. These docs also do not believe in coinfections or that lyme can persist after their 30-day treatment.
I started treating lyme with my regular primary care doctor. He gave me 30 days of meds. After that, he refused to give me any more even though I was still terribly sick. That's how I found out about "the great divide" when it comes to lyme disease.
Due to his refusal and refusal of the neurologist he sent me to, I was forced to seek out a lyme specialist through the lyme support groups in my state. That is how I finally got adequate medical care for lyme and that is how I found out all of the other coinfections the tick bite gave me.
Here is a video done by a Boston TV station about 2 years ago that explains the controversy.
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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