-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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METALLlC BLUE
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posted
Dr. F (Who runs the smears in Arizona) still does not know exactly what he's seeing from what I last heard. His treatment is actually quite different than the traditional Bartonella therapy. Typically he treats with a combination for 4-6 months. He is not an advocate for the short term therapies which rotate quickly. He's using (or was) Clindamycin with Quinine drugs. His therapy may have changed in the last year though for the blood smear infection he's seeing.
O
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Looked at my own blood smear (with kit and microscope) and saw many cuboid bacteria scattered around (RBC) red blood cell perimeter. Took flagyl,zithro,bactrim and doxy,during bactrim holiday. Stopped antibiotics briefly 2 months later, rechecked smear and could not find any cuboidal bacteria. (did see Babesia though). I was feeling a lot better, sleeping better, making some new progress with exercise and weights etc. Less frequent and less severe brain fog much less shin pain and plantar pain. Are the bacteria Bartonella, hemobartonella, Bartonella like organism BLO, or maybe mycoplasma? We do not know. But I know I feel better when they are not evident on the blood smear.
Just started artemisinin and bactrim/zith for the Babesia a few days ago. Will probably try to rotate in doxy and flagyl here and there too.
I believe zith,bactrim,flagyl,doxy cover a lot of microbial territory (for little expense except for zith) whether mycop.,bart,hemobart etc. Lab tests are too unreliable and expensive for those of us without Health insurance.
Beachinit.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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CD57
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posted
Bechinit what was your schedule for the above meds -- Flagyl et all? Was Dr F treating you?
Posts: 3528 | From US | Registered: Apr 2007
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posted
8 days of flagyl 250 mg 3-4 tabs/day then began zithro 500 mg/day, then week later add in bactrim DS 1 tab bid and subtract out flagyl for awhile (adding in doxy for 2 wks) and recycle a few times with some adjustments on flagyl (due to neuropathy side effect). Not Dr F. A family friend who is llmd helps me come up with plan. If my GP approves it then we go with that.
Beachinit
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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springshowers
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posted
Karen .. many are still confused and it seems to be a lack of information and communication and even many doctors still order this smear test from Fry Labs to confirm Bartonella?
Well we know that is not correct but many do not know that or understand that. Many more than you would think.
So its good to post this. I started a thread a few times saying exactly this and tried too.
So though if people would call the lab and have their doctor call the lab before just ordering tests and assuming then they would understand it better.
As well remembering it is research and ever evolving is more of a reason to call before doing tests or choosing what tests to order.
Dr Fry is using things like plaquenil and biaxin and plaquenil and Minocycline and plaquenil and tetracyline. Sometimes people respond to mepron zithromax. Some do well on things like Alinia.
Things that might treat protozoan infections seems to work best and or cross over..
He recommends Buluoke for biofilms and I am sure other things may help or work.
But its a tough bug.. and tough to treat. The whole disease is tough tough tough.
I do notice though that I seem to be able to treat the other infections easier than this one and this one is always left in the end.
Some treatments have made me temporarily feel almost normal and then it all comes back. Its a smart bug and I believe makes many toxins and feeds off of and formulates colonies with other bugs we have too..
So imagine a glob of snot stuck in you and the infections you have harboring house in there and nothing can get that snot to dissolve so they make it their home. They use that home to thrive and live and they watch the abx bounce off their house and they get to stay alive..
I think that getting that snot to break up and go away is a big thing. That could end up being many things. Not just biofilm busters. But what else keeps that going and alive. What can disrupt it.
I am certain the lab is thinking and doing research on these sorts of questions.
I hope soon we will have more options and ideas.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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CD57
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posted
I thought that was weird....does Biaxin and Plaq or Plaq and Mino treat a protozoal infection?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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posted
Some treatments have made me temporarily feel almost normal and then it all comes back. Its a smart bug and I believe makes many toxins and feeds off of and formulates colonies with other bugs we have too.. --------------------------
Spring, how do you isolate your symptoms from this thing vs your other bugs (I assume you have Lyme and co's)?
Posts: 3528 | From US | Registered: Apr 2007
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springshowers
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posted
Again Call the lab but they offer this package called the complete package and it a two teir test that will show if you have one or both of the things we are talking about. I was told that if you show positive on the first mycoplasma that most likely you will be positive on the next smear for the protozoan and biofilms.
Complete Stain Profile 87206 Fluourescent DNA Stain (with photo) 87205 Organismal Enrichment (Giemsa) 87207 Stained Smear MMG (with photo) 87205 Traditional Giemsa (Thin/Thick Prep) Includes four total stains (with 2 photos)
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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springshowers
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posted
I have been able to isolate after years of treatment and just how I feel..
Just my own theory and feeling and it may not work or be right for everyone.
Just as people have listed Babesia symptoms as compared to Bartonella and compared to Lyme.
Some are the same and cross over and some seems more obvious as one or the other..
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springshowers
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posted
Yes
"Tetracyclines have been used for treatment of a wide variety of gram‐positive and gram‐negative bacterial infections since the 1950s. In addition to being effective against traditional bacteria, tetracyclines have been used to treat infections due to intracellular chlamydiae, mycoplasmas, rickettsiae, and protozoan parasites"
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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karenl
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posted
springshowers,
thank you so much for explaining everything again.
I posted it one night in the headline because so many people think they have bartonella and many docs are still treating them without having positive IGM, IGG. My bartonella test was always negative IGM,IGG and my ART tester said I do not have it. So they have been right. I think this protozoan is like the equine meningitis protozoan when the horses get problems with the leg.
I think we can wait till Dr. Fry is able to PCR the protozoan and then we probably can treat it.
You write about the chlamydia which lives very often in the biofilm. I think many of us - especially the people with bartonella symptoms - could also have chlamydia.I checked the webpage and it fits for vein problems, lymph problems... porphyria symptoms.
I am on minocyclin and doing better. Have to add plaquenil later.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Dr F doesn't know what he is looking at... I wonder if he knows what he is doing. Even other LLMD's now think his test is bogus.
Posts: 458 | From Miss | Registered: Mar 2009
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posted
Bogus or not A PCR is not sensitive enough to pick up Bartonella in blood unless it has been sucessfully cultured first. (Might be the same for other pathogenes) Only one or two labs know how to do that.So ruling out certain bacteria is not well founded,I believe. Gale
Posts: 268 | From europe | Registered: May 2008
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posted
My doc is using the test, but disagrees that it's haemobartonella - he treats it as a BLO, even if we don't yet know what exactly it is, and many of his patients seem to be improving on his treatment. I won't go further into this as he asked me not to discuss it publicly.
He is using Zithromax, Rifampin, and Boluoke on me so far...a little early to say if it's going to cure me or not, but I feel quite a lot better.
Posts: 131 | From PA | Registered: Aug 2007
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karenl
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posted
I can guess which doc is asking not to talk about treatment. Zithromax and rifampin is also a protocol for chlamydia pneumonia, maybe you have this as well. Makes red lines, blue veins and spider veins and a lot of fatigue.
If you feel better it is always a good sign, more important than the right wording. I also did better on this combination.
Posts: 1834 | From US | Registered: Oct 2008
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posted
galaxy seems to be open for human testing now.The lab that can find out if you have bartonella.
Posts: 268 | From europe | Registered: May 2008
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quote:Originally posted by karenl: I can guess which doc is asking not to talk about treatment.
If you feel better it is always a good sign, more important than the right wording. I also did better on this combination.
It's not important who he is; the point was that there is disagreement as to what the tests are showing. I guess he doesn't want to get involved with drama at this point. Posts: 131 | From PA | Registered: Aug 2007
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springshowers
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posted
Call the lab. My gosh there is so much confusion and I have typed it up so many times I just give.
There is much more than this than the above and there are other bugs being seen that are not hemobartonella and PCR tests for them and they are parasitic.
Call the lab and ask. Have you doctor call the lab and ask. No matter how many times it gets explained there is always someone behind who writes up what they knew at different time frames and it is not current.
Please do not use this forum to get info on this subject. I am telling you there is nobody posting valid or true or accurate info.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Your doctor can have a preliminary "report" about the research in Frylabs.It does not, however, shed much light to the open questions discussed above. Calling the lab is not a good idea as a patient, of course. The pcrs you refer to is not something offered to the general public.You have posted that you got one for a parasitic thing as part of a research programme. So, people "in on" the latest cant reveal the substance, there is still no publication.It is all still in the dark, unfortunately. Please understand that this is not meant as pro-con regarding Frylabs. Personally, I have had a positive pcr for bartonella elsewhere.Naturally, that makes me wonder. Gale
[ 06-02-2010, 02:57 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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springshowers
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posted
Gale You just do no get it and you keep talking in circles about things. Maybe your confused. Call the lab. It is recommended for anyone if you just do not understand what is going on there..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
``... I am telling you there is nobody posting valid or true or accurate info...''
I think I understand the labwork; the microbes, biofilm, etc. But Gail is right on, in all of her points, as far as I am concerned. If you can't explain it, maybe you can tell us why? The only thing I am confused about is your ``call the lab'' mantra.
``Sunlight is the best disinfectant...''
And this quote from a Marshall Protocol graduate!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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springshowers
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posted
Reason I said it is that people are not posting correct info and are confusing the whole situation more than ever. People are not up to date and everyone has different info and it makes one big mess. So instead of do that.. i say you should call the lab ... sadly.. i wish it was different but people are not wanting to get informed and be up to date and then spread stuff that is not accurate and the rest of the people get more confused.
That just makes it worse..
But hey do whatever. I just think its a shame and I said my say. Others who read this will know to do their own homework because nobody (very few) know whats up in this area...
Even the whole theme of this thread is off.. Way off.. Do your homework if you want to know and learn.
And Calling the lab to find out is the best place to start because certainly it is NOT Here !!! UGH>>
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Arent the same antibiotics used for Bart are used for Myco?.....Levaquin, Cipro....etc.
Posts: 39 | From Northern California | Registered: Mar 2010
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posted
Springshowers The information you can get if "you call the lab" (or read the doctor`s information) is that 1.There is bacteria (the ones described as haemobartonella)belonging to the proteobacterial class. ( Apart from the visual id in the smears there is no pcr test-, no antibody-test for it in the lab)I believe that there might be several different bacteria at play.
2.(If you have the positive advanced smear)there is also biofilm and/or organisms .The probable parasite is not easily seen in the smear photo.(the descriptiuon states biofilm and/or organisms) I suppose the hypotheses is that there is different bacteria, parasites,fungus and biofilm and what not.
You have posted that you had a specific pcr made for a parasitic organism.(and that you are not allowed? to tell about it).It would be helpful to know more about it.To my knowledge no picture of the parasite has been presented yet (could be part of the biofilm mess?)
As I understand it,Frylabs is in the process of a comprehensive research project trying to link inflammatory disease to the findings in their smears etc. What the outcome will be? not easy to tell,I think.
Gale
[ 06-07-2010, 12:41 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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posted
Both my sons tested highly positive for Mycoplasma. Then had Fry Labs done which found Haemobartonella. So now are we saying these could be the same thing??
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
Whatever it shows, treatment is helping my condition greatly, for while I am grateful. Will I be "cured"? Who knows. Time will tell.
Posts: 131 | From PA | Registered: Aug 2007
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springshowers
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Member # 19863
posted
I would not listen to what Gale writes here.
There is some weird agenda to she has to write out bogus info so that someone will come along and correct her in hopes "SHE" will gain more info.
And she does this at all of the rest of your expense because you come along and read it and think it is all real and true.
Another reason to do your own research and have your doctors or yourself contact the doctor or lab and gather up the Correct accurate info so that you can be treated accordingly and so you get the best and correct tests and understand what they are and what they will tell you.
Be careful about certain folks who claim to be one thing and turn out to be another...
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springshowers
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posted
Karenl
The people here are the worst to keep confusing the subject and I know you keep trying and so do I
but there are those who always will end up not being that way..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Springshowers, I don't post much these days. But I do try to visit, and when I see a trouble maker, like you, I do post.
Your post is inappropriate for a long list of reasons; but I'll defer to the moderators.
Even if you are correct in your personal attack, a more sophisticated and credible response would be to employ the use of facts - which you seem to avoid. Please try to use more logical and factual arguments for all involved. Otherwise, you are not credible.
Moderators!?
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
Ok, I think we've gone over this before with you galehale. Same topic. Same dr. and lab that you like to stir up dumb questions.
CALL THE LAB.. you've been told that for weeks and maybe months now. What is it that you have a hard time believeing in what Dr. F is doing?
What is it that you have a hard time with that this could be something completely different than your typical lyme? CALL THE LAB. Don't come in here and cause trouble. Springshowers has been more than nice in here over and over.
Yea... and by the way... I am in treatment with Dr.F And yea... he just has come back from two large lyme conferences in which... sorry.. but a lot of your llmd's attended and agreed with what he was saying.
Sit back and relax... there will be information out there when it's ready to be shared. UNTIL THEN CALL THE LAB IF YOU WANT TO KNOW ANYTHING. I have their phone number if you'd like it.
And remember folks... if you don't have a degree hanging on your wall saying your a microbiologist or MD... then good grief... why take someone's word on what is going on.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
The things I have posted about how to interpret the findings from F-lab are very loyal to the information that docs can have from the lab about the subject.
In consequence,I believe one should be careful not to be too certain about what it is and isnt. New information , of course is interesting. Gale
[ 06-14-2010, 10:04 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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quote:Originally posted by Cold Feet: Moderators!?
I've been out of town and have not yet been put back on as a moderator, so I can't do anything right now.
Just so you all know, it's completely ineffective to post within a thread to get our attention. The way to report a post, is to click on "report post" at the bottom of each post.
If no one reports a post, we probably don't realize there's a problem. We rely on YOUR HELP to find the argumentative post, the posts in the wrong place, etc.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
moderator. Dont bother- I didnt post in order to "provoke", so that I personally could benefit from information.Woukld be in the interest for everybody with tests out of the lab. But if it perceived as that,that is just the way it is. Gale
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