posted
If I haven't been tested for co-infections, how do I know if/which ones I would have?
Are they treated differently than lyme?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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WPinVA
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How ill are you? Did you get very sick suddenly or did it come on slowly?
People with co-infections often are sicker and get hit worse more quickly. Whereas, Lyme alone can come on slowly. But there are no hard and fast rules.
You can also look up symptom lists for the common co-infections. Babesia for example often has sweats and shortness of breath.
In the end it's a clinical diagnosis aided by tests. It's a good idea to be tested for co-infections but those tests aren't perfect either.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
It seemed to be gradual. I can look back and see symptoms, but it didn't really get bad until about 3 years ago... progressively.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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WPinVA
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what did your LLMD say? H/she is the one to ask.
And yes, they are treated differently than Lyme. Although some abx do double duty.
Posts: 1737 | From Virginia | Registered: Aug 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
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Member # 14183
posted
The way you know if you have coinfections is to be tested for them by your lyme doctor at a good lab. Also, you tell the lyme doctor your symptoms and he can sometimes tell just by the symptoms.
You can look at the symptom list Burrascano gives. See pages 26-27 and the pages prior to that also.
As you will see in Burrascano, each coinfection requires different treatment. A good lyme doc tests you for coinfections at the first appointment.
If money is tight, some will just diagnose you based on obvious symptoms. The tests are not that reliable as you will read in Burrascano. So, the tests miss many cases of coinfection.
The tests at Igenex will cost over $600 for a complete coinfection panel. That includes at least 2 different tests for each disease. That gives you the best chance of getting the proper diagnosis.
Read about the coinfections starting at page 22 of Burrascano. The more you read these pages and study them, the more you will understand about the diseases and also it will help you understand what the lyme doctor is talking about.
Unfortunately, with this disease, there is no substitute for an educated patient. It gives the best chance of getting well because you will be able to tell if your doctor's treatment is good or not. For example, if he never brings up the subject of coinfections, you are wasting your time with him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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So, I'm not sure a test will show up for co-infections either. I've been studying Dr. B's paper and learning lots.
My Dr. did mention co-infections, but we are so early in our treatment.... one step at a time I guess.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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TF
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As I said above, a good lyme doc tests for coinfections at the first appointment unless the patient's symptoms clearly show that they have babesiosis, bartonella, and ehrlichia.
Since your lyme test was negative, you seem to think that none of your other tests will give any result. Think about that. Do you know what lyme test was done on you? Was it a test looking for antibodies?
Well, for babesiosis, the doctor should have a technician look directly at your blood and see if he sees any babesiosis in your red blood cells. That is called the FISH test. Don't you think that if you were full of babesiosis, this test would likely show it?
Perhaps you think that your body isn't making antibodies to anything. But, just know that there are coinfection tests that do NOT look for antibodies. They look for the infection itself. There is also a FISH for bartonella, I believe.
So, just because you were negative on a lyme Western Blot (which looks for antibodies to the lyme bacteria), it does NOT mean that your coinfection tests will also be negative. Do you think that if you also had TB your TB test would be negative. Or the same for any other disease you had?
I don't know why you are anticipating negative coinfection tests. You would have to explain yourself.
Before I got to a lyme doctor, all of the tests that the regular doctors did on me were all good--all blood tests, spinal tap, etc. That is because they are not doing the right tests!
I had lesions on my brain also, but the neurologist dismissed them.
Once you get to a lyme doctor, you should NOT anticipate more negative tests. Now you have a doctor who will test you for diseases that you most likely have and will use totally different tests from what any of the other doctors used before him.
Perhaps you have been "beat up" by the regular doctors. I know what that is like. It was done to me for 10 LONG years before I got to a lyme doctor.
Once I got to a Burrascano type lyme doctor, he tested me for the coinfections at my first appointment even though I did NOT have any symptoms of babesiosis or bartonella. He ordered at least 2 different types of tests for each (the Igenex complete coinfection panel). I turned out to be positive for both babesiosis and bartonealla. Nearly all lyme patients have all 3 of these. So, expect that you will have all 3 also especially if you have been sick over 1 year. Burrascano says in his talks that any lyme patient sick over 1 year definitely has coinfections.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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p. 26 of Burrascano:
"Bartonella symptoms:
GI involvement may present as gastritis or abdominal pain (mesenteric adenitis)."
Generally, gastrointestinal complaints come from having bartonella. Seems you must be having such complaints to have the gastric emptying test.
Once I was treated for bart, my mysterious, horrendous abdominal pains all went away. My gastro was never able to find anything wrong with me--not with colonoscopies, full body scans, etc.
These coinfections do not show up on such tests.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I think most of my symptoms are BART after reading dr. b protocol!
I need to see if my LLMD follows this!
Thank you so so much! I feel like I'm starting to at least get myself pointed in the right direction!
Thank you everyone!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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TF
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posted
Ceftin is used to treat lyme disease when the person cannot take amoxicillin or doxycycline. Here are the statements Burrascano makes about ceftin:
Talking about what meds treat lyme:
"CEPHALOSPORINS must be of advanced generation: first generation drugs are rarely effective and second generation drugs are comparable to amoxicillin and doxycycline both in-vitro and in-vivo. . . . Cephalosporins have been shown to be effective in penicillin and tetracycline failures. Cefuroxime axetil (Ceftin), a second generation agent, is also effective against staph and thus is useful in treating atypical erythema migrans that may represent a mixed infection that contains some of the more common skin pathogens in addition to Bb. Because this agent’s G.I. side effects and high cost, it is not often used as first line drug. As with the penicillins, try to achieve high, sustained blood and tissue levels by frequent dosing and/or the use of probenecid. Measure peak and trough blood levels when possible." (p. 14)
So, Ceftin is costly. has gastrointestinal side effects and should be used along with probenecid to keep high levels in the blood. Or, you can take the med frequently. Burrascano also recommends blood testing to find out the highest level of Ceftin you are achieving (peak) and the lowest (trough). If you don't have sufficient blood levels, you will be a treatment failure.
Dosage: "*Cefuroxime axetil- Oral alternative that may be effective in amoxicillin and doxycycline failures. Useful in EM rashes co-infected with common skin pathogens. Adults and pregnancy: 1g q12h and adjust." (p. 18)
In plain English, this says adults need 1 gram every 12 hours and adjust for the patient's weight. So, more for a very heavy patient. One gram is 1,000 mg.
To search Burrascano for any word, get the document on the screen and press Control+F (the Find function). A box will appear. Type in your search word and press enter. It will then jump to any instance of the word in the document. (Use right arrow for next instance.)
For a med, you have to use the generic name of the medication.
The more you study Burrascano, the more you will know whether or not your doc follows him. For example, dosage of meds, preferred meds, testing for coinfections, etc.
In general, it takes a doctor with a lot of expertise to cure a person of this horrendous disease. That usually requires many years of experience with lyme. A doc who treats ONLY lyme disease is getting lots of experience. Those who have a regular medical practice and treat lyme in addition are getting little experience (unless lyme patients are at least half of their practice.)
It takes about 10 years of treating many patients for a doc to get a lot of expertise with this complex disease. Find out from support groups and other patients if your doc follows Burrascano and how long your doc has been treating lyme. Don't ask the doctor because they will all say that they DO follow Burrascano, even if they don't.
I looked at all of your posts, and I would say that your doc does NOT follow Burrascano. (Most doctors don't. They don't have the courage.)
The doc is the key to getting rid of this disease, so get to the very best lyme doctor you can afford. Be willing to travel for expertise, including going out of state.
Here on the east coast we have so much more lyme disease that we generally have better lyme doctors than in Ohio and western Pa.
If you want the name of a very good doctor here in Maryland, near D.C., just let me know. He will do telephone or Skype appointments so that you only have to travel here once every 3 months. He has the required experience and expertise for all but the most difficult cases.
Here is a good article that talks about various treatments for bartonella. Burrascano recommends Levaquin, which is the best, but Levaquin is dangerous to some folks. It can cause tendons to rip. So, you may want to find a doc who avoids Levaquin when treating bartonella.
Keep on studying! I studied Burrascano and figured out that my second lyme doctor was giving me lousy treatment. I then called other lyme support groups and asked for a doc who did EVERYTHING Burrascano said to do. That is how I found the doc who cured me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, I would LOVE the name of the DC dr. Especially if he skypes and I could only travel there every three months! Please pm me!!
I'm studying a lot and learning a lot! I'm so thankful for this group but still feel like I need a dr. That will take charge and follow dr. B's. His protocol makes so much sense!
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