Hoosiers51
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It was positive for Hemobartonella or mycoplasma, but there were only 3 or 4 seen on this slide.
I'm concerned about two other things on this slide that I see, however.....
My cells do look kind of "sickly." Some of them are stuck together, not in clumps of 4 or more, usually just in clumps of 2 (and one clump of 3) cells stuck together. I'm assuming this isn't healthy? So should I take more Wobenzym?
Also, some of cell membranes don't look healthy. A few the cells look like they are crescent shaped, or like they have a mouth like Pac Man.
Does anyone else have either of those phenomona going on??? I just want to get a sense of, is this bad, and what can I do about it?
The third issue is that one cell towards the top has a large-ish purple blob in it. Just hoping this isn't babesia or some kind of intercellular thing I should be concerned with? Does anyone know? Babesia looks different in the examples on their site, but those seem more close up, and this is more far away, so I'm wondering if it's babs.
I had a positive titer for babesia a few months ago.
Thanks!!!!
PS--I will try to post the pic here, so we'll see how that goes. Thank you.
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CD57
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Hey Hoos, I also had a few specks of the hemobartonella, as did a lot of folks on here.
I can't really comment on the way the cells are supposed to look, but the lab is really open to people calling and asking questions, you could call them and ask. They might choose not to comment though, since that is not what you did the slide for.
Why not ask LLMD as well?
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Hoosiers51
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Okay, here is a link that shows my smear:
mypage.iu.edu/~jbcrowde/Fry Smear(1).pdf
Just copy that link and paste it into a new window. Then click "okay" for however your computer wants to display it. Thanks!
Yup CD57, I'm sure I'll ask LLMD, but my next appointment is a month away, and I don't want to bug them with it yet! Or should I? Hmmm...if that blob is babesia, I might call them and bug them....
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lymestop
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I Did a search and there are two spots I found of patients posting their pictures of their smears if you would like to take a look for comparing
Hoosiers51
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Wasn't it Plaquenil and Biaxin that they are saying is the best bet right now according to Dr. Fry to treat this bug?
Because I was on Plaquenil and Zithromax with my Mepron in September I think it was for 6 weeks (6 weeks was the Plaquenil, 5 months for the Mepron/Zithro), and I felt a few symptoms clear during that time, specifically the time I was on Plaquenil.
I feel that my brain cleared up some, and I had a flare of strange neuro symptoms like tingling and pins and needles sensations and twitching. Then, my brain was more clear. But then I had to stop Plaquenil due to side effects that were definitely side effects, not a herx.
Then after i went off Mepron/Zithromax, I went on Minocycline and Rifampin, and I now I'm on Minocycline and Bactrim.
So, I figured I have been on quite a few things recently, so maybe a few of those got my load of this mystery bug down some. I was on Minocycline only at the time of the test.
My CD57 is only 15 though, so my LLMD thinks that Lyme is the main infection I'm currently fighting.
I didn't get any of the other testing done at Fry. My doctor's office mailed this smear to me, so if they did look at it, they didn't discuss the results with me yet, or call me to change anything.
I think right now their main goal with me is to get the Lyme load down (even symptomatically he said it seems to be mostly Lyme though I tested positive for babesia) and their other main goal is detox. I'm not sure how much this smear will change that. We'll see. I won't know for a month probably, because that's my next appointment.
Thanks for posting those other links, I'll take a look at them.
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Hoosiers51
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lymestop,
In the second link you posted, if you look at disturbedme's slide, they labelled hers as "consistent with bartonella spp." This looks like what they labelled on mine as "hemobartonella/mycoplasma." But her post is from April of last year.
So is there some difference between them that I'm not seeing, or is it that Fry Labs used to think those things on the outside of the cells were bartonella, and now they think it's something else?
My cells do look a little more clumped than most of the slides I've seen, so I guess I'll start taking Wobenzym more regularly.
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seekhelp
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I'm not sure if it's the same, but i had live blood microscopy done before. If you think those cells are clumped, you should've seen mine. Yours are perfect compared to what I had. Night and day. It was hard to find free-flowing RBCs.
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CD57
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OK I just compared your slide to mine. My cells don't have the pac man shape but some are sort of clumpy and there are little legs/sunburst thingies coming out of some of them.
Do we have any hematologists on here?!
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kelmo
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the large purplish blob is a white blood cell.
We just got back from an appointment with him today.
Please don't PM me, or beg me to share. I'm sure there will be bulletins about the news he shared with us today.
All I can tell you is that he is presenting at the Kansas City clinic this month, and his lab techs are doing cartwheels and my daughter's protocol will be drastically changing in about six weeks.
seekhelp
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Just say clindamycin is the new treatment.... Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
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Kelmo, Sounds very promising! I can hardly wait to hear what it is!!!!!!! Hallelujah, if it's anything that will end up "sticking" as a permananent treatment, and helping those of us that have been suffering so very much.
Seek, sorry your cells are so clumped. I wasn't inferring mine are horribly clumped...just a "little" more clumped than some people's. Definitely look into some high dose Wobenzym or other treatments for that....Wobenzym does help me.
The sunburst shape might just mean the cell is kind of sickly? (for lack of a better term) I have seen those kinds of cells on slides before and that is what I might have heard? But not sure, so don't take my word for it!!!! It's just a hypothesis on my part.
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lymestop
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A large group of other smears from the same fry lab.
Hoosiers51
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If you look at the yeast picture, and especially the Malaria picture, in the above link, it looks like you can see Fry's "hemobartonella/mycoplasma" attached to the outside of a couple of the cells.
Wonder why that is?
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quote:Originally posted by seekhelp: Just say clindamycin is the new treatment....
Oh great! I have the Fry mystery bug and I took lots of Clindamycin. It was one of the few abx that didn't do ANYTHING for me.
This doesn't give me lots of hope.
Gabrielle
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tickbattler
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Kelmo -
This is very exciting...are you saying that they have actually figured out what the mystery bug is?!! If they are doing cartwheels, then I guess so! This is HUGE news. When is his presentation?
Please share any info as soon as it is public!! 5 of my family members have this little black dot attached to our cells and it would be so wonderful to get rid of it!
Hoosiers51
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tickbattler,
Are all your family members that have the hemobartonella/mycoplasma sick? Or are some asymptomatic?
Thanks!
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kelmo
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This is the conference where Fry will make his presentation:
Dr. Ryser to Hold Spring 2009 Conference in KC Lyme and Chronic Illness: New Tools to Promote Accurate Diagnosis and Treatment
Date: March 27 & 28, 2009
Synoposis: Lyme disease is one the most mis-understood diseases of modern medicine. Lyme disease is not a ``stand alone disease''. Lyme disease is a multi-systemic disease that affects all systems of the body. It is best understood as a tick-borne syndrome, a myriad of diseases including Borreliosis, Babesia, Bartonella, Rocky Mountain Fever, and many other diseases. In order to properly diagnose and treat Lyme Borreliosis disease, the physician must consider chronic illness as a whole and how the Borreliosis spirochete interacts with, influences and acerbates other chronic medical conditions. Successful treatment of Lyme disease must encompass all body systems affected. In this workshop, participants will gain a better understanding of the diagnosis and treatment of tick-borne diseases in conjunction with chronic illness as a whole.
Speakers:Carol Ann Ryser MD, Chronic Illness specialist, speaking on Chronic Illness and the Diagnosis/Treatment of Tick-Borne diseases; Steven Fry MD, of Fry Lab and developer of specialized testing for tick borne diseases speaking on co-factors affecting tick-born diseases and new lab developments; Reginald Dussing MD of Kansas University Medical Center specializing in SPECT Scan testing speaking on how the SPECT Scan can help provide a diagnostic tool; David Berg MA of HEMEX Lab and researcher on Hypercoagulation defect speaking on the mechanism of coagulation/ inflammation and chronic illness; Joseph Brewer MD, Kansas City Infectious Disease physician, researcher in transfer factors for infectious diseases, speaking on infectious disease treatment options.
Times: 8:00 am - 5:00 pm each day
Place: Marriott Hotel, 45th and Main in Kansas City, Missouri, just north of the Plaza (816-531-3000)
Cost:$300 prior to March 15 and $350 at the door
Conference Reservations: Contact Michael at Health Centers of America KC LLC (Phone: 816-763-9165); (Fax: 816-763-9208) or (email: [email protected]).
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Hoosiers51
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Thanks for posting this, Kelmo.
Will there be a video of the conference for sale, or some kind of transcript we can download? Do they ever do that kind of thing at these conferences? Or maybe some Power Point presentations will be available online?
I would be interested not only in what Dr. Fry has to say, but the other speakers as well. Sounds interesting.
Is there anyone here going to the conference who would be willing to take notes and type them up for others to see? (a lot to ask of a sick person, but you never know)
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oxygenbabe
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Well actually I'm more interested in Dr. Brewer's presentation!! Will this be taped/video or webcammed? I'm taking TF now and I believe there is a lot of untapped potential there.
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Hoosiers51
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Yes, I'm interested in all the presentations....sounds like a good conference, for sure!
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posted
hoosier Be sure not to treat for mycoplasma or haemobart as the patient with him were told the very same day as you got your results that treatment was going to be changed dramatically.Must mean that there is a different ID on the bug. (Being revealed one of the next days) Gale
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Has anyone heard any info on this conference? Wasn't Fry going to announce some new findings? A couple of the other posts on this have been deleted. Does anyone know why?
Hopefully someone is going and will post what ever they hear.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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adamm
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I was under the impression, after having read the other threads on this, that CDC thugs had been messing with Fry...
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kelmo
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He is making his presentation on the 28th in Kansas City. I notice that information hasn't been posted anywhere.
CDC thugs? I haven't heard that.
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posted
Well I am really interested in any info that might come out at the conference. So I hope that if anyone goes, they let us know what they heard.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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cantgiveupyet
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Is anyone going to this conference? Will his new treatment protocol be made public so that we can all receive the proper treatment for this bug?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
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Hoosiers51
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I would also like to know if Dr. Fry presents a list of any "characteristic symptoms" of this mystery bug at the conference, in addition to the treatment (which is the most important thing).
I'm assuming there are symptoms like fatigue and brain fog (which can happen with many of these infections), but it would be nice to know if there are any "tell-tale" symptoms.
In general, knowing what symptoms to look for during treatment (or after treatment is stopped for a possible relapse) would be helpful when treating a pathogen.
It would also be nice to know if there are symptoms like night sweats that you see in other TBD's too, or to put it another way, does the mystery bug mimic another specific TBD? (something like this could drastically change the treatment for those who think they are treating seronegative babesia, for example. Maybe they should then switch their focus to this bug).
Those are all just some general questions I ask myself about this new bug.
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kelmo
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He said that they are finding this organism in every one of his chronically ill patients. This includes ALS, CFS/FMS, Autism, MS, Lyme, etc.
He says the symptoms depend on the genetic makeup of the person as to what direction it will take.
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Hoosiers51
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Thank you kelmo. That makes sense.
Other questions I would have to those going to the conference (or maybe kelmo knows) would be...
So how do people come in contact with it? (i.e., how do they contract it?)
Or do most people come in contact with it, but it's just opportunistic? (like chronic Epstein Barr Virus, etc)
(My intention isn't to bombard those that know, I am just saying these are things I think we should be asking ourselves or anyone who goes to the conference, like if your LLMD goes)
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You asked if my family members who have this result are sypmtomatic, and yes, we are, to varying degrees. I and my three children had this result. Just a couple of bacteria adhering to the cells. I sometimes wonder if I passed it on to them, but they had tick bites too so I will never know.
posted
All the research I have done indicates that if this is a bloodborne parasite then it most likely is from some sort of insect bite or possibly transmitted through the placenta or a blood transfusion.
If it was a virus or bacteria there could be other means of transmission -- but for a parasite to actually get into the bloodstream almost always requires a bite from a blood sucking insect.
As for the symptoms -- since lyme, babesia and bartonella are all bloodborne infections then any symptom they might present would probably be possible from this unknown mystery bug if it is actually a parasite.
These are my own opinions based on what research I have done. They make logical sense to me -- but then again not much about these illnesses is logical.
It does seem more realistic that it would be a parasite rather than a bacteria since the immune system does not seem to respond and since antibiotics do not seem very effective in killing it.
Very few with these infections are getting sepsis or dying from an acute infection -- what you would expect from a widely occurring bloodborne bacterial infection that has gone undiagnosed for years in many patients.
Bea Seibert
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Hoosiers51
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Bea,
Thanks. Everything you said makes a lot of sense.
The only thing I would ask then is, why would Dr. Fry also be seeing this in all his ALS, CFS/FMS patients?
Could that many people really have been bitten by an insect transmitting this (or the placenta or transfusion)?
It seems like at least SOME of the people suffering from chronic fatigue must be suffering from chronic fatigue that is not due to infectious organisms (those with adrenal fatigue, or hormonal issues, etc), so why would he be seeing this in EVERY CFS patient?
That is the only reason why I wonder if this is opportunistic instead of something that some insects carry but others don't (I would assume if all insects carry it, most people would be exposed to it, then that puts it back in the opportunistic category) (hope my logic is clear)
I'm definitely not trying to argue with you because I would prefer to believe what you are suggesting, because it makes sense.
BUT...if he is seeing it in all patients with CFS/FMS meaning patients with chronic fatigue AND joint pain (not "or" joint pain)....then erase what I said, because I would believe it can be vector borne.
So basically for my logic, in wondering the "prevelance" of the mystery bug, a lot of this hinges on exactly what Dr. Fry is claiming to find and what he means by CFS/FMS. (is the slash an "and" or an "or")?
I am DEFINITELY not discounting Dr. Fry's work because I'm very interested in it, just asking questions and thinking these things through out loud.
Of course, I probably should not over-think this since the presentation is only a couple days away, but I just can't help but be curious, and also, I'm not sure how much information is actually going to end up making it back to "us."
Have I thoroughly confused anyone? It's okay...I'm just musing....hope it at least made a little sense!
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posted
Can one be sure that the "mystery bug" is one and the same organism and not different kinds.I dont think so.
What is the substance of the "CDC thugs" messing with Fry? Gale
[ 03-26-2009, 05:37 AM: Message edited by: galehane ]
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CD57
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I don't think we have a lot of answers yet.
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CD57
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It's my understanding that this bug can also cross react with the Lyme and co tests. So people may be told they have babesia when they actually have this bug. I was told that the Igenex tests in particular are very sensitive and may be picking up this bug but calling it something else.
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cantgiveupyet
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Very interesting CD57 because I tested positive for the Fry bug and Babesia on the Igenex FISH test. I tested negative on the Igenex IGM/IGG for Babesia.
CD57 did your LLMD tell you this info. Feel free to PM me.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
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Hoosiers51
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I wonder if the titer tests for babesia duncani cross-react with the mystery bug(s?) too.
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posted
Well I hope we hear something today or tomorrow on the conference. I think it was the 27 and 28??
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kelmo
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"Could that many people really have been bitten by an insect transmitting this (or the placenta or transfusion)?"
Of course! We've all been bitten by something. He says everyone is probably a carrier. The next step is to find out WHY the body decides to allow it to run wild and cause a chronic illness.
But, what he said in his office, and I'm trying to stay positive about, is that if they can identify the specific protozoa for that particular patient, they can design a protocol that will give 80% cure. He emphasized "cure".
When I asked him about my friend with ALS who is now on a vent if it was too late, he said, "not necessarily".
We'll see what comes out of this conference tomorrow.
Then...I hope we can still get appointments the same week.
posted
I think I recall, in a previous thread, a report that the CDC had "[gotten] in touch]" and that some claim from the lab had been rescinded after that. I might be on crack, though.
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kelmo
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If there's been a problem, I haven't heard it from the doc.
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Hoosiers51
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I hope he is making a blood test available to find out what drugs each person's strain is susceptible to? (obviously it's not practical for most people to travel to see him in person).
Otherwise, hopefully there are only a couple different combinations of things that would work, so that our LLMD's could figure it out on a trial and error basis.
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posted
If anyone goes to the meeting today please report back to us what was said.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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kelmo
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Yes, hoos, he is making a blood test available like he has all the others, then a recommendation will be made from there.
I'm cautiously hopeful. I saw his excitement, but I will believe it when I see my daughter out of pain.
He mentioned some drugs, none I had ever heard of, but said he would have to get my daughter's blood first to zero in on it.
We will go in a couple of weeks to do that.
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cantgiveupyet
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So, this will be a new blood test?
aiden- i think the meeting was only open to medical professionals and not patients.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
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Or should I? Hmmm...if that blob is babesia, I might call them and bug them....
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