Just curious Thanks Kris
Posted by disturbedme (Member # 12346) on :
I wasn't tested exclusively for the mystery bug. I was tested and "Bartonella" came back positive. But now supposedly Bartonella from Fry is the mystery bug.
1. Fry. 2. Positive. 3. Lyme, Babesia (clinical diagnosis - due to feeling so much better on Mepron, etc.). 4. One year and a half. 5. Heart issues like tachycardia and palpitations that have to be controlled with Toprol, feeling very dizzy/woozy/feeling like I'm going to lose consciousness a lot of the time, head pressure that makes the wooziness and sound sensitivity that I have a ton worse, anxiety, etc.
Posted by sutherngrl (Member # 16270) on :
It is likely that if you treat Lyme, you will also be treating the mystery bug. Just my opinion. Who knows how many germs those darn ticks are carrying!
Posted by joysie (Member # 11063) on :
bumping...
Posted by hoot (Member # 19281) on :
My son (10) came back with hemobart or myco on smear only. All other antibody tests negative. IgeneX...many bands positive/IND but interpretation negative.
4. He has had biomedical treatment for autism for many years. Some positives especially with MB12 injections and chelation. Just started treatment with Zhang herbs yesterday.
5. Autism (lack of communication and socialization, learning speed). Not sick per se.
Posted by CD57 (Member # 11749) on :
1. If so, at Clongen or Fry? FRy
2. Positive result? MYCOPLASMA SPP OR HEMOBARTONELLA
3. What other diagnoses do you have? LYME, BART, BABS (CLINICAL)
4. How long have you been in treatment? 2 YRS
5. Worst symptoms? NEURO
Posted by Alv (Member # 15192) on :
1. If so, at Clongen or Fry? FRY
2. Positive result? Mucoplasma SPP or HEMOBARTONELLA 3. What other diagnoses do you have? Lyme and positive on bartonella henselae 4. How long have you been in treatment? 6 months 5. Worst symptoms? Neuro and spine back pain .
Posted by bettyg (Member # 6147) on :
lymestop, treatments are discouraged to talk about in depth of quantity/meds.
remember we are trying to PROTECT our limited llmds! thanks Posted by METALLlC BLUE (Member # 6628) on :
I was tested.
1. If so, at Clongen or Fry? Fry
2. Positive result? Postive Blood Smear
3. What other diagnoses do you have? Rocky Mountain Spotted Fever, Bartonella (BLO), Babesia, EBV, Statchyobotrys Chartrum (mold), and two older infections of m. Pneumonia, and c. Pneumonia.
4. How long have you been in treatment? 7 Years
5. Worst symptoms? Psychiatric, Digestive, Cognitive, Fatigue, a lot of bloating of the belly
Special Note: I was told I only had Lyme from 2002 thru 2009. In 2009 I saw a new Lyme Specialist who run a wide variety of testing. I ran my own testing in 2008. That's when I got the Igenex full panel -- Lyme WB was strong IGM and IGG positive on all accounts. All co-infection testing was negative. Quest later tested me and Rocky Mountain came back positive, along with Mold and some other things. Babesia and Bartonella were diagnosed based on the clinical history.
Posted by AthinLyne (Member # 17626) on :
1. Fry 2. positive 3. Lyme, Babesia, Ehr, EBV 4. 4 months by duck, 4 months by LLMD 5. digestive, palps, fatigue, cognitive, arthritic, visual etc
Posted by joysie (Member # 11063) on :
I am delighted this thread got revived. I forgot to answer my own questions
3. What other diagnoses do you have? Babesia, clinical lyme and bartonella
4. How long have you been in treatment? 1.5 years
5. Worst symptoms? NEURO, fatigue
I'd love to hear from others. I know we don't even know if they are comparable organisms, but it is still something to do while we wait !
Kris
Posted by joysie (Member # 11063) on :
Bumping this back up. It is hard to believe a year has passed. Anybody know anything new? Anyone want to add? Kris
Posted by lauirel (Member # 16640) on :
Would anyone be willing to explain what "the mystery bug" means? Is there a link? Does this have anything to do with the midwestern strain they are having trouble identifying?
Laurie
Posted by Hoosiers51 (Member # 15759) on :
Probably nothing to do with a Midwestern strain.
No one knows what it is, or even if it causes illness in people. There are so many unknowns at this point. It is being found quite frequently in people with all kinds of chronic illnesses, but unfortunately that is not enough info to conclude much. It could just be an opportunistic bug. Until we know what it is, no one knows how to treat it.
Personally, I think it's more important to worry about the things that we have identified for now, until more info comes out.
Posted by springshowers (Member # 19863) on :
The "mystery bug" name came from the couple labs around such as Fry labs and Clogen who are seeing various pathegens in our blood that should not be there. Notably two and one being a bacteria and one a protozoan.
There has been much research and new information always coming out about them
At first it seemed to be the bacteria that was of concern and then it became the new protozoan found that is though to be a bigger culprit.
There are smear tests available at Fry Labs and in this next month or so there will be a PCR test also avaiailable for this protozoan infection.
I have already been tested using the smear test quite a few times and have pictures of results as well as I have been given the PCR test and came up positive as well. I am a patient and part of research done there that is why I have gotten the test in office prior to people being offered it to be ordered.
I was told One month ago that it would be about two months before it would be added to the ordering form online at Fry Labs.
There has also in this past year two new smear tests offered and this is all new in this past year.
If you had the older smears or the smears showing only the bacterium it would be what they call homebartonella .. or mycoplasma.
The new tests will be looking at and for the protozoan and will show a biofilm cluster and the protozoans in that biofilm. Sometimes you can see some of the mycoplasma right in that biofilm as well. It is very interesting and I think a large key to this and many diseases .
Hope this helps anyone new who does not really know what it is or the history.
There are many drugs being tried out and tested for therapy but not have erradicated it yet. Things like Plaquenil and Biaxin and Plaquenil and Minocyline are some.
Along with that things like Bulouke or other biofilm busters as we call them are encouraged so that you can help get rid of some of that biofilm that is hiding those bugs from our systems and abx.
Also we are told that we should not supplement with things like magnesium because the bugs thrive on it. L Lysine is encouraged to take as well as Vitamin D3. And do not eat Arginine rich foods.
There is more research also being done for some other therapies that are not yet being used but being talked about and researched and I am hopeful that will help.
Thats about all I can remember right now..
Posted by lauirel (Member # 16640) on :
Thank you Hoosiers51 and springshowers for explaining.
Posted by aiden424 (Member # 7633) on :
Is there even a mystery Bug?? I didn't think it ended up to be true. If there was one, I'm sure that something would have been published by now.
Posted by elizzza811 (Member # 24713) on :
Hoot, you may want to check some of the autism links out in this ProHealth thread. Apparently EMF exposure may be involved in autism, not just bugs alone. The bugs may be getting some help.
2.Positive Blood Smear (photo showed ring form in or on red blood cell)
3.Lyme, clinical Babesia (i assume), candida in the guts
4. 5 1/2 years, stopped antibiotics, now rifing
5. worst symptom was gut candida --- gut candida seems to be suddenly better, maybe from rifing!
Otherwise i don't have severe symptoms,; some moderate eye pains which are responding to rifing for bartonella , Toxoplasmosis, and lyme.
Fry Labs said it was Hemobartonella or mycoplasms,; they said i was negative for babesia.
----Polly Polygonum ----or Nilufar Knotweed
Posted by seibertneurolyme (Member # 6416) on :
aiden 424,
I believe there are multiple mystery pathogens found in tickborne disease patients. The reason nothing has been published yet is that these are either new pathogens or new strains that have not yet been DNA sequenced. Research takes years unfortunately.
Hubby had positive blood smears from F lab 2 times and once from Clongen. Were the labs seeing the same bacteria? Can't be sure, but I think so in hubby's case.
Personally I believe the bacteria seen on hubby's blood smears was either bartonella or mycoplasma. Or the infamous BLO described by Dr B.
Have not had the newer F lab tests done -- I am saving our money to do testing with the new Galaxy Lab in Raleigh, NC when that opens to the public -- hopefully in a few months. Actually if we had the $ I would like to test at all 3 labs at the same time -- probably not going to happen though.
Hubby has been treating with bart meds and herbs pretty aggressively for over 2 years -- although we have not retestd in over a year I am about 99% sure he still has this bacteria whatever it is.
Bea Seibert
Posted by galehane (Member # 15437) on :
Springshowers thank you for the info. Would you be able to tell what the pcr was positive for-guess they told you that?that would solve the puzzle! Gale
[ 03-15-2010, 08:31 AM: Message edited by: galehane ]
Posted by janice victorov (Member # 22937) on :
Morning, I tested positive through fry. I was given zith/plaquenil.
I was on this for a month and then off.
I've had some other returning symptoms and the doctor said that the FRY smear may need to be re-treated. JKV
Posted by springshowers (Member # 19863) on :
Gale
Actually Yes I do have a name for it but.. I will wait unit it is announced from the lab and not me.
Not sure what the hold up is but I was told the test would be available to the public in the upcoming months .. so then the name should be on the test then.
Even if it is available to the public does not mean it is not still for research. Just a reminder. Sometimes I think that is forgotten.. in all this Fry Lab work.
Posted by galehane (Member # 15437) on :
springshowers I see.Could you tell if it is a bacteria or prtotozoa? Would be helpful Gale
Posted by Haley (Member # 22008) on :
spring - what types of foods are rich in Arginine? I have never heard this.
Posted by springshowers (Member # 19863) on :
It is a protozoan.
Haley If you look up online by typing in foods rich in arginine then lists will come up for you.
Usually people with herpes are told to stay on this sort diet as well.
If you take l lysine it does counteract some of that arginine in the foods you eat as well..
So.. l lysine is a win win
Posted by galehane (Member # 15437) on :
springshowers Thank you. That is in line with the result that people whomsent their blood to a renowned German lab had.They thought it was microsporidia initially-not quite right. Gale
![[Smile]](smile.gif)