Has anyone thus far come back with the mystery bug being protozoa? on the paperwork?
Am I clear on what was once seen as haemobartonella by F is now considered protozoa? Or is the protozoa an add'l finding?
What does this mean for those that have been treating haemobartonella if the protozoa drugs are different?
Im finding this quite confusing that so many have had the haemobartonella finding. Was that then not a true finding? We went from mycoplasma to protozoa? Hope this thing gets cloned soon!!!
(I realize that these tests are for medical research use and how hard the Lab is working to solve this mystery.)
Posted by Leelee (Member # 19112) on :
Seriously want to know too! Posted by seibertneurolyme (Member # 6416) on :
It is my understanding that F lab is in the process of developing a PCR test for the mystery protozoa. Doubt they will change the terminology on their blood slide until they have an alternative test.
Bea Seibert
Posted by MarsyNY (Member # 7766) on :
Bea,
Im still confused, it sounds like this is replacing the haemobart/mycoplasma finding? Not an additional finding? I would love to know from one of his patients.
Posted by MarsyNY (Member # 7766) on :
Well, my friend just came back with the paperwork that states either hemoplasma or protozoa.
So the haemobart/mycoplasma is now hemoplasma/protozoa.????????
He started her on Zithromax which tells me we are still not sure what this is. No anti-protozoan drugs.
Could this approach be part of the research. Treating some with the toxo type drugs and others with the haemobart drugs?
Posted by MarsyNY (Member # 7766) on :
Tosho, thanks, yes I just read about the mild antiprotozoan effects of zithromax. Certainly doesnt look like a cure-all. However maybe it has a dual effect on the hemoplasma as well.
I am also optimistic about the work this dr. is doing. One has to be willing to experiment going in though I think.
Posted by seibertneurolyme (Member # 6416) on :
Mary, Thanks for the update.
Hubby had me google haemoplasma -- came back as 3 different types of feline mycoplasma.
So it looks like Dr F is still saying that the bacteria he has found and the protozoa both look visually identical.
Really hoping he makes PCR tests available soon.
Mycoplasma is generally treated with the same meds as bartonella so obviously for patients it is still a guessing game as to which meds might work.
Hubby's LLMD believes that Zith can work on Lyme, babesia and bartonella all. But by itself it will not erradicate any of those infections in my opinion.
Bea Seibert
Posted by bears1985 (Member # 17271) on :
It has DNA of Malaria/Toxoplasmosis. There is an opportunistic gram negative bacteria in the mix...it is only "opportunistic". There was a DNA match sent around the world to see if this organism had ever been recognized...it came back negative. So we are looking at a new organism, never been found...not even in the Veternarian World.
Posted by seibertneurolyme (Member # 6416) on :
Bears -- Please clarify --
Was it the protozoa or the bacteria which is a new organism?
Thanks
Bea Seibert
Posted by bears1985 (Member # 17271) on :
Bea - the Protozoa is new and the other is gram negative bacteria that is not new.
Posted by MarsyNY (Member # 7766) on :
Bears,
Could you e-mail me the info or link on the DNA
Thanks, Marsy
Posted by MarsyNY (Member # 7766) on :
Bea,
Thanks again, makes sense that they look similar.
Tell me what Im missing though, how was the protozoa identified? Or is the lab still not sure what it is?
Im leaning more towards the hemoplasma here.
Posted by bears1985 (Member # 17271) on :
There is nothing missing:
There are 2 Organsims-
A. Gram negative bacteria (OPPORTUNISTIC) B. Protozoan (DNA related to Malaria/Toxo)
The only thing missing is the medium to grow them on. If you have a medium, maybe we can get started.
Posted by MarsyNY (Member # 7766) on :
Bears, excuse the brain fog. Wish I did have a medium Id be feverishly at work here to help solve this mystery.
I understand that there are 2 organisms what I am missing is if there is no medium to grow them on what is the deciding factor that this is protozoan? just how it looks on a slide?
Could you point me in the direction of where the information is that this has the DNA of malaria/toxo. Who sent the DNA around the world a lab or the CDC?
Posted by Jill E. (Member # 9121) on :
Does anyone know if Dr. F. has talked about using the drug Alinia for the protozoan bug?
I'm on Alinia now for Babesia and as a cyst-buster. It is anti-protozoan, yet is very expensive, so many LLMDs are not using it regularly.
I haven't had the Fry test yet, but plan to when I can afford it.
Jill
Posted by kelmo (Member # 8797) on :
Wait a while to get the Fry test. Save up. He needs to get enough supplies to start mass testing, and to identify the best meds for each organism.
Right now, he is just keeping us on anti-parasite (plaquinil) and mino or biaxin.
We have added lumbrikonase to give an extra boost, since my daughter has been on that combo a long time.
Posted by galehane (Member # 15437) on :
Bears Pleae help with clarification again :Is this info from Fry?Sending the sequence around the world?
"The only thing missing is the medium to grow them on. If you have a medium, maybe we can get started." Problem is, everybody with this infection IS the medium.If you want to grow it in a lab I dont think a small lab stands a chance.
Gale
Posted by aiden424 (Member # 7633) on :
I sure wish someone would hurry up and figure this out! I hope we'll have a test better then the tests for Lyme.
Posted by capebite (Member # 9789) on :
So what about herbal treatments?? The lab hinted that there were no known prescrption treatments but that here were natural ones...Buhner says Cryptolepsis and stephania will help with neurological seizure activity ...nutramedix says their new Red Leaf product will help?? Dr Zhang says Coptis, HH and Artemisin??? What is really helping??
Posted by galehane (Member # 15437) on :
Bears Think you are crossing a line here.People are sick and want answers and need therapy that works. You ask if some of us have a medium to grow the pathogene on.??? Not a time or place for jokes ,I think.If you want to help (yourself?) and people suffering reprort it to somebody able to culture and research it.I have. Gale
[ 05-16-2009, 09:49 AM: Message edited by: galehane ]
Posted by bears1985 (Member # 17271) on :
Gale
I dont think I am crossing a line. As a matter of fact...I know I am not crossing a line. You say "people are sick"...well I am too. Do you think I am a scientist that is just making statements? If I was a scientist, I would be busy working on this.
If people cant take jokes, then the chance of someone ever getting well is slim...anyway. Just to let you know...this information comes from a reputable lab and it has been reported. I would try not to stress myself out about statements made on this website, because like your statement...it carries little weight in the scheme of things.
Everything I have posted about the new research is factual and based on scientific evidence. My posts are just to the point.
Posted by springshowers (Member # 19863) on :
Does anyone know what this natural or herbal treatment is that the lab supposedly talked about to someone?
Or what are your best guesses? Looks like Alinia is brought up as a question lately. And then Buhner and or Zang items.
I am wondering what fits best ... what do you guys think?
Posted by mikej2323 (Member # 8913) on :
I still haven't seen a solid answer yet either...for those who had the early test done that stated it was, "suggestive for bartonella spp."- is this the same thing as the "mystery bug" protzoa?
I think the best answer to that question is that it could be, but it could not be.
I think that is why kelmo was saying that getting the test done right now may not be a good idea if you want a definitive answer on what is being seen on the slides.
From what I gather, the people with slides labelled "suggestive for bartonella" could be seeing any of the above things we talked about (hemoplasma, protozoa) on that slide.
Posted by mikej2323 (Member # 8913) on :
Please see my post today on hubby's new bloodsmear from F lab.
How about an update on Alex?
Bea Seibert
Posted by mikej2323 (Member # 8913) on :
I saw that Bea- thanks.
We're being advised to start samento and begin zeolite drops. Also starting IV anti-candida drug.
Got a tip that a doctor down south is doing chelation in those with this type of neurological problem, but told us he wouldn't help because the treatment would bring out the metals in the blood...blah, blah, blah. Too much work or too lazy...who knows????
Possibly starting the full C-protocol along with the PE-1...not too many other choices. Can't seem to find anyone who really improved with this. I can only find those that speak out against it...same with Dr. K's protocols/treatment ideas.
Had her tested through Clongen for bart due to more striae appearing on the front of her legs by her hips...PCR was negative for Bartonella spp. Now being told the striae are not from bart, but from the neuroendocrine changes that are happening. She doesn't have a cycle anymore, so not sure if this is true or not. Looked it up---and hormonal changes can cause striae.
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