posted
up for those who are familiar with the FISH test.
I do know that those with suppressed immune systems have trouble making antibodies.
There are WAY more strains of babesia than any set of tests can measure or find.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I know I was negative for b. microti IgG and IgM but positive on the FISH test. This was through Igenex.
My lyme doc said that I had babs because the FISH test is one in which the technician actually looks at your blood through a high powered microscope trying to see if there are any babs germs in your red blood cells.
If the technician sees a certain number of them on the slide, then you are positive by the FISH.
So, the FISH test is a direct test for babs. The IgG and IgM are indirect tests for babs. This means that they are not looking for the babs germ itself but for antibodies to babs. If they find antibodies, then the patient must have babs, or that is how the reasoning goes.
I also did not have the typical babs symptoms. I felt like I didn't have any babs symptoms at all. Never any sweats or air hunger, etc.
I always figured that the reason the IgG and IgM were negative was because there just weren't any antibodies in the sample they tested. None of these tests are reliable, so I would just say that the test is not accurate. I would not conclude that you do not make antibodies to babs.
My lyme doc wasn't concerned with my blood test results, so I never thought anything of them. He just said that he did numerous tests for each disease because that increased the chances of one of them detecting the disease--the tests aren't that reliable. He said that a positive FISH could not be a false positive because of how the test is done, so that I definitely had babs. I never spent one second thinking about the negative IgG and IgM for babs after he explained my test results.
So, I don't think you have a thing to worry about except getting rid of babs.
Here is a quote from Burrascano for you:
"In Babesiosis, no single test is reliable enough to be used alone." (page 5)
By the way, when I started treating babs, I certainly got symptoms then! So, that was absolute proof to me that I really did have babs.
It is now over 6 1/2 years since I completed my treatment and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for your response TF very insightful.
I've treated Babs aggressively and never got any sx during or after treatment. What does that mean?
Are the drugs not affecting the parasite?
After 4 rounds of Mepron/Zith/Art I did Dr. H's babs protocol with high dose of Bactrim/Clindamycin w/o any change either!
From the FISH tests it's obvious that I have Babs, but why am I not responding to any treatment protocols?
The only sx that got better with treatment is the fatigue and it was never debilitating to begin with.
Did you have the "walking off the top of a mountain onto a cloud" feeling before/during or after treatment?
Posts: 133 | From Philly/NJ | Registered: Nov 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Before treatment, I had a little bit of the tipsy feeling; not true vertigo.
During treatment, I got horrendous flares (my doc's word) like clockwork every 7 days. They lasted 48 hours and they were a living hell--mentally I felt totally doomed. Physically, I did not move, talk, eat, drink, go to the bathroom, etc. I just lay there.
(All of the rest of the days of the week, I felt like a normal person. Babs was the last disease we treated. I was already rid of lyme and bart.)
The way I knew the babs was gone was when the flares were totally gone. The flares became very, very mild and jumped to every 14 days before they were gone.
I treated babs for 11-12 months with Bactrim DS and pulsed artemesinin. I talk about it more on this recent thread:
Did your positive FISH test say it was b. microti?
If your test was through Igenex, I might give them a call to discuss whether this really is babs or whether it could actually be some other illness.
This is what their website says about the babs FISH:
"The FISH assay is performed on thin blood smears and detects the ribosomal RNA of Babesia (thereby indicating active infection). "
So, this indicates that it is much more sophisticated than it was when I was tested over 7 1/2 years ago. It seems like it would be pretty accurate if it is detecting the RNA.
What does your doctor say? If it is doc H., I would be very interested in what he says.
I would also re-read everything in Burrascano about babs. Here is a quote from page 24:
"Treatment failures usually are related to inadequate atovaquone levels. Therefore, patients who are not cured with this regimen can be retreated with higher doses (and atovaquone blood levels can be checked), as this has proven effective in many of my patients."
The docs I know test atovaquone levels if the patient is having difficulty clearing babs. If you are not absorbing the mepron, it doesn't matter how much you take, you won't have enough in the blood to kill the germs. Taking fat with the mepron increases absorption significantly.
And, it is not unusual in medicine for a certain individual to not absorb a hormone delivered in a certain way (patch, pill, gel on skin, etc.), but they can absorb that same hormone if delivered in a different way. So, perhaps that is a factor with you. I would certainly want mepron levels tested if I went back on mepron. If that is the problem (inadequate mepron level), it should be easily corrected. Discovering the problem is generally nine-tenths of the battle.
A final thought is that it is essential that a lyme patient exercise (meaning, the Burrascano exercise plan--1 continuous hour of weight-lifting/calesthenics every other day) if they are ever to get rid of any of these diseases.
Burrascano says it, my doc told it to me, and the other lyme docs I recommend to folks all say the same thing.
This is how you boost your immune system so that it can get the upper hand on these diseases. If you don't exercise/boost the immune system, you will always relapse when the medications are stopped.
So, if you are not doing this, begin doing it. The Burrascano protocol is a 4-pronged protocol:
antibiotics supplements and herbs diet exercise (1 hour of weight-lifting every OTHER day)
You must do all 4 to get well. Many seem to overlook the exercise, both doctors and patients.
Be sure you do a full body routine each time, exercising all muscle groups (arms, legs, chest, back, buttocks, abdominals, etc.). Using weight machines is the easiest way to do this, but you can also rig up various weights (pulleys, etc.) at home and if you have a simple weight bench to go along with it, you will be all set. That is what I did.
Just throwing things out there to try and help you.
I hope you took the art with the bactrim also. My doc had me take it on an empty stomach, twice per day, and he gave me the best brand. I pulsed it. Can't take it continuously.
Now, I am very interested in your case. Please post when you have any new developments.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I never got any "flares" before/during or after treatment? What exactly do you mean by flares can you please describe them. I read your link, but I'm still confused?
The way I feel is constant there are days that are worse than others. For example I pulse Art 4on/3off. The first day I take Art I feel the worse. The next day a little better. Could I have one continous flare?
On to the FISH test. I looked at my results and nowhere on there does it say what type of piroplasts was in the RBCs?
Also I'm not sure what you mean by saying to call Igenex and asking them about the illness? How would they know what my illness is?
And yes I took Art with the Bactrim DS along with Clindamycin. No change, no herx, no nothing? What does this mean? Is the Babesia parasite so resistant that none of the drugs are affecting it?
Posts: 133 | From Philly/NJ | Registered: Nov 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
My new LLMD ran an ECP test, and I tested negative for Babs, although 11 years ago I had drenching sweats and 103 fevers in the initial illness.
I have been on malarone a few times, so maybe that did it.
Posts: 1954 | From Illinois | Registered: Aug 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I described the flares above. Here it is again:
"mentally I felt totally doomed. Physically, I did not move, talk, eat, drink, go to the bathroom, etc. I just lay there."
I believe that I just drifted in and out of consciousness at this time. As I described above, all of the rest of the days of the week, I felt like a totally normal person. I had no symptoms of any kind.
When the flares lessened, they became just an overwhelming need to go to sleep right NOW! That is what I described in the link.
Your next question:
You said in your first post:
"I tested positive for Babesia through Igenex FISH multiple times even after very aggressive treatment. "
I asked you if the positive FISH tests said what STRAIN of babesia you had. Did it say microti or any other strain on your Igenex FISH results? It sounds like you are saying the test results do not tell the strain. So, if that is the case, you may have b. duncani or some other strain other than microti. Then, since the Igenex IgG and IgM is testing for microti, you show negative on them because you do not have microti.
Your third question regarding calling Igenex:
I am saying that you may want to call Igenex, tell them you have a positive FISH and ask if it is possible that this could be some other illness causing this positive FISH. They know their FISH test. So, they should be able to tell you if any other illness can cause a person to have a positive babs FISH from their lab. You can tell them that you don't respond at all to babs treatment, so that is why you are wondering if your illness could possibly be something other than babs.
Igenex should know if their test can distinguish babs from all other illnesses. You are not asking them a question about your illness. You are asking them a question about their test.
These are just some ideas to help you figure out what might be going on in your case.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I called Igenex the women who answered said "...tests for direct detection of Babesia species (e.g. B. microti, B. duncani) rRNA in whole blood smears..."
I told her that I'm not responding to any treatment and that I don't have the typical sx. She told me to call back and talk to Dr. Harris?
Unfortunately he's not available till Nov 1st. I plan on calling back then.
I don't understand how some folks on here have the classic Babs sx and yet are negative (FISH) and I'm positive w/o the classic sx?
No herx or flare? I'm beginning to wonder if what I'm feeling is one long herx or flare or some type of immune response to the parasite?
Posts: 133 | From Philly/NJ | Registered: Nov 2009
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