posted
3 weeks ago i was diagnosed with lyme....i am currently on rocephin....i asked about being tested for co infections and my dr told me the rocephin would treat all co infections anyway and didnt test me....is it worth pushing for the test....is it a blood draw, and is it mainly babesosis, bartonella, mycoplasma and what else?????
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Florence, each coinfection requires different treatment. The coinfections can be difficult to get rid of, sometimes very difficult.
Treating lyme is very complex. To find out how to treat each coinfection, please read the Burrascano lyme treatment guidelines found here:
Virtually every person with lyme disease has at least one coinfection. Generally, people have two or more. I and all my friends here in Maryland had lyme, babesiosis, and bartonella. This is the most common combo. But others exist.
I didn't get well until I switched to a Burrascano type lyme doc. That's the doc who tested me for coinfections--at the first appt-- and I then found out (after over 2 years of poor lyme treatment) all the diseases I actually had.
The doc treated me with different meds for each coinfection. He treated them one by one. In a year, I was finished with treatment.
I had had these diseases undiagnosed for 10 years. Now, it has been 4 1/2 years since I completed my treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
In my opinion, the best lab to use for coinfection testing is Igenex. It is a blood test. But the blood must be handled just right, or you are wasting your money ($600 for a coinfection panel) You must pay for it upfront, they don't take insurnace. See their website here for the various coinfection panels: http://igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf).
So, if your doc is not used to using Igenex, get to one who uses them routinely.
You see, if the blood is not taken early in the week and shipped rush delivery to Igenex, it will clump and then the lab won't be able to find your diseases in the clumped up blood.
To read all about this, read the post near the top of Medical Questions called "Dr. C's Western Blot Explanation" He talks about the importance of the rush shipping to Igenex.
Here's a portion of what Dr. C says about this:
"You get what you pay for, so use a lab that specializes in borreliosis. The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week.
Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.
The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done.
This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens. "
I believe these instructions apply to finding the coinfections as well as the lyme (borreliosis).
So, you may want to post in "Seeking a Doctor" or call some local lyme support groups (see left side of page for Support Groups) to find a doc who tests for coinfections.
Testing for coinfections is a necessity in my opinion. However, I have heard of a few good lyme docs who simply assume that every lyme patient has babesiosis and bartonella and treats them for it. Either way, you want treatment that lines up with the Burrascano guidelines.
So, if my doc told me what yours told you, I wouldn't push him for the tests because he doesn't sound like he knows how to treat the coinfections. I would be looking for a new doc.
You should not be the one having to figure out which tests to ask for or order. You want your lyme doc to have the expertise in this. A good lyme doc knows the most likely possibilities in your area of the country.
I hate to see people waste time with lyme docs who don't take coinfections seriously and don't learn how to treat them. That was my story. I don't want it to be yours. Sorry. I know people don't like to switch docs. But, it was the best medical decision I ever made.
This is why I still hang around Lymenet--because I like to point people to how to get rid of this disease quickly. I hate to hear of repeats of my experience and people spending years on lousy lyme treatment never realizing that their doc doesn't know enough to get them well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote:Originally posted by Florence1: ...i am currently on rocephin....i asked about being tested for co infections and my dr told me the rocephin would treat all co infections anyway and didnt test me....
You may want to begin your search for a dr who knows about coinfections. Otherwise, you could be spinning your wheels.
Welcome
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree that co-infections are serious and almost always present so you need to address them early on. I was diagnosed with Lyme and then a year later bartonella. I also can tell you that the labs only test for 2-3 strains of bart but there are over 30, so a doctor that goes by symptoms is preferable to one that won't treat without a positive test. Schaller wrote a book which is good for diagnosing bartonella. It is a very disappointing book for treatment options.
TF, would you please explain your treatment. Did your doctor only address one infection at a time or did he give you different drugs for all of them at once? I live in Montana and the nearest LLMD is over 500 miles. I saw him once but cannot go back as it is too expensive so I have to get as much advice as I can to pass along to my family doctor who knows no more than what I give him. I am taking rifampin and zithromax for bartonella right now. I am not addressing the lyme with abx as I can't tolerate that many drugs at once. I do use some herbs for it. thanks.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
For nefferdun,
First, my doc treated my lyme. Then, he treated my bartonella. Then, he treated my babesiosis.
So, I was never on more than 2 meds at a time.
I took 2 meds together for lyme--one to kill the regular form and one to kill the cyst form.
After that, I stayed on the one to kill the cyst form and added one drug to kill bartonella.
Then, I went off both of those and went on a drug to kill babesiosis. It is a med that is actually 2 meds in one. I added artimesinin to the treatment after a month.
So, I never took a lot of drugs at one time.
The doc thought he might have to go back and re-treat the lyme at the end, but it wasn't necessary in my case.
Private message me if you want the exact treatment protocol. It follows Burrascano pretty much, but some deviation to accommodate my inability to take zithromax and biaxin.
Dosages are important.
Posts: 9931 | From Maryland | Registered: Dec 2007
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
TF-just a short note..I have the same Dr as you, I have lyme, babs and bart. I am usually on 2 meds at a time..weaning off again after 3 years with our Dr and on meds.
He treated me a little different-bart, then a short course for babs, then bactrim/zith for bart & babs, now a rotation of 3 meds, including a cyst buster.
Even with the best of docs, a year of treatment isn't always enough.
Posts: 1276 | From maryland | Registered: Jan 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Beths that is so true!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
True!
Wish you the best beths!
Posts: 9931 | From Maryland | Registered: Dec 2007
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