I havent posted in a while, so here we go. I do not like controversy, but every critic will come out for this one.
I just had my blood drawn and I still have this Protozoan. It has officially been DNA sequenced and lights up like a roman candle under the microscope now. The way it is found, for those who do not understand, is that they take your blood...put it on a slide, take a drop of DNA sequencing material and the sequencing material travels through the blood until it lands on the correct DNA. I SEEN the protozoa and the biofilm or "merot". It is an amazing thing, because this protozoa cannot be seen without this sequencing. It is tiny....very small.
Within the biofilm lies many creatures...white blood cells who were trapped after trying to destroy the organisms, hemobartonella and another protozoa.
I am 90% most days taking Biaxin, Plaquenil and Systemic Enzymes...with Garlic. This lab is amazing and is publishing several papers next month.
The reason other labs cant find this organism is because of the way they handle it. This biofilm is harboring a variety of organisms and it will be known soon that this protozoa is the reason that there is NO AMOUNT of ANTIBIOTICS that can completely destroy this beast. So all you on IV's (I have been there) i would might change my protocol to a much safer protocol until a cure is found.
Posted by cantgiveupyet (Member # 8165) on :
Interesting bears. THanks for sharing. I have seen quite a few post they had success with biaxin Plaquenil
Posted by seibertneurolyme (Member # 6416) on :
Bears,
I am a little confused -- is the lab procedure you are describing the new F lab test for biofilm that is listed on the lab order form or is this some new different experimental test available only to the docs patients?
Since you say the protozoa has been DNA sequenced -- do you know if it is a species of babesia or theileria or something else entirely different?
Also, are you taking Wobenzyme or what brand of enzymes and what is your dose please?
Thanks for the update.
Bea Seibert
Posted by springshowers (Member # 19863) on :
Bears That is great news.! And onward and forward and I hope this brings even further answers on how to treat this darn stuff.
Posted by bears1985 (Member # 17271) on :
Seibert - I havent seen the biofilm listed on the testing sheet, but it may be the same. It is not a species of babesia...toxo and malaria...still working on it, but almost there in completely identifying it.
I am taking Theramedix products. Nattokinase and Serrapeptase. PRX 2 per day and RPR 6-18 per day. I will up PRX to 4 per day.
Posted by asus (Member # 13881) on :
Thanks for the upate. Has Dr. Fry stated the journal his article will be published in?
Posted by bears1985 (Member # 17271) on :
I havent heard asus, but i will let you know as soon as I find out.
Posted by Lymeorsomething (Member # 16359) on :
Yes, sounds good and the lab definitely needs to publish there findings because there have been way too many speculative findings coming out of this lab. That being said, I'd love to read the articles. Good research is exactly what it's going to take to combat these complex diseases...
Posted by CD57 (Member # 11749) on :
Do the Wobenzym/systemic enzymes and garlic break the biofilm, is that the idea?
How often does this bug reproduce and what symptoms does it cause?
Posted by bettyg (Member # 6147) on :
thx for the update bears Posted by kelmo (Member # 8797) on :
Bears...I didn't understand this sentence. Could you break it down?
<I am taking Theramedix products. Nattokinase and Serrapeptase. PRX 2 per day and RPR 6-18 per day. I will up PRX to 4 per day.>
Posted by Pinelady (Member # 18524) on :
You might visit Rick at LymeinfoYahoogroups as he just posted a new finding of large quantities of Calcium crystals found in the biofilm of Bb. So glad many are working on this.
Posted by springshowers (Member # 19863) on :
I am finding the more I concentrate on the biofilms such as Supplements or EDTA or whatever the worse and worse I feel. I know you are supposed to feel worse before better but it is getting to a horrible point. And the more I try the worse I feel. I do not know where you draw the line.
Posted by schnuddelka (Member # 8031) on :
I just got my fry labs test back, and finally tested positive for the coinfections, Bartonella, Babesia and Ehrlichea through this process.
It is really good, and the smear that they do is different from anybody else.
Bad news, insurance didn't reimburse me, but it was worth it to find out why I still had these lingering symptoms.
My hematologist was ready to do a bone marrow transplant because of my wbc and rbc and hemoglobin counts. After several blood transfusions we finally know the cause.
42 doctors and 3 llmd's even missed it, so thank God for this new test! THanks bears for bringing the history and process into the light!
Posted by bears1985 (Member # 17271) on :
No prob........
Posted by seibertneurolyme (Member # 6416) on :
kelmo,
here are links to the 2 products Bears is taking -- from the website these look like quality products, but I have no personal experience with this company. A google search with the company name of theramedix found several supplement companies which carry these products.
Item 1 -- PRX -- Bears is taking 2 and plans to increase to 4 capsules daily
At the doses Bears is on these enzymes don't come cheap. Could easily spend $5 or more daily for just these 2 products. Hubby's Vitalzym and lumbrokinase currently run around $4 daily so the price is in line. Have no way to compare which product line or combo would be more effective.
Bea Seibert
Posted by Cass A (Member # 11134) on :
Sorry--there's a technical term here I've never seen before: MEROT.
What is that??
Best,
Cass A
Posted by galehane (Member # 15437) on :
dear Bears You anticipated crtiticism beacuse of your post.I hope you can see the following remarks not so much as criticism but as utter frustration with the persistant rumors that have come from frylabs the last many years.Always turning out to be incorrect.
1.About publishing next (this) month.This has been told here by patients with Dr Fry for years.I gather you have the information from somebody in -Frylabs.Correct?If so, the text must have been written and sent to some journal long ago(that is normal procedure).Do you know where it is being published.If it is not in a journal that carries weight - it doesnt really matter.
2.Some time ago the reports from Frylabs insisted that there was a bacteria as well as a protozoa.What happened to the bacteria?
3.No amount of antibiotics can erradicate this protozoa, you say.Very likely,as only a few antibiotics are effective against protozoas.(To my knowledge Biaxin is not among them). Also the lab-reports from Frylabs still describe it as haemobartonella- not a protozoa, but a bacteria????A lab wouldnt suggest a bacteria if they knew it was a protozoa??
4.your description of how this organism is found in the lab seems to be by a traditional immunohistochemical coloring technique. You are right- the organism has to have been sequenced in order to do that.BUT- how does that fit with your statement that they are almost there "completely identifying it"-If it is sequenced- it is identified.Only a name is missing.We have heard that the lab has sent the sequence round the world and found no match.in that sense it is not a secret any more.Why not tell what it is??
Because of all the earlier incoherent incorrect reports from Frylabs , I believe that all people reporting information from Frylabs should do their very very best to be careful about what they report from there.Things dont add up. Gale
[ 10-04-2009, 07:22 AM: Message edited by: galehane ]
Posted by JamesNYC (Member # 15793) on :
Well stated Gale.
Fry labs creates it's own controversy by making contradictory and vague statements.
James
Posted by seekhelp (Member # 15067) on :
I have not sent a blood smear here and considered it before, but now I can't. I agree that this lab has many different viewpoints. I know this is hard stuff, but something bothers me about it all. it doesn't seem ethical to keep collexting money for labs and never ID stuff definitively and change the finding consistently.
Posted by lou (Member # 81) on :
It is really not worth answering the critics on this post, as they are never going to understand the nature of research and why it is hard for a small oufit to produce results instantly. Why aren't the big boys helping us, should be the question.
Even after a bug is identified, there may not be any good treatment for it. It is obviously hard to kill, since we have already been on so many meds. And science in general does not have biofilms figured out, this is a new avenue of research. So, why would you expect a small lab to have this figured out?
But, the critics have been told all this before and still continue their unhelpful and negative posts. One in particular seems to have made this his life's work, to hinder and criticize.
Posted by galehane (Member # 15437) on :
yes that me have tried to make the big boys help us.Not possible in the real world unless LABS /state labs /big hospitals take the initiative. Gale
Posted by Hoosiers51 (Member # 15759) on :
Zitromax (I have no citations for this, only what doctors have said), as well as Doxycycline (there are MANY citations for this because it is even used against malaria), both have action against protozoa. So perhaps Biaxin does too.
Plaquenil would also impact protozoa.
Also, of course we know that Clindamycin treats protozoal infections, and the macrolides are as similar to Clindamycin in terms of what they do, without actually being a macrolide, as you can get. That doesn't mean anything really, but that is where the logic comes from of Zith/Biaxin and these protozoa.
Clindamycin on it's own should be enough to kill babesia, because it can kill malaria on it's own, it just takes much longer than combining it with something else for malaria that is more powerful.
Posted by bears1985 (Member # 17271) on :
Gale...gale...gale. Sorry that you are so confused. Biaxin does work against Protozoa...it is used against malaria. It is a slow acting anti-malarial. *http://www.malariajournal.com/content/7/1/255
Everything that I have stated...I know from the source. I dont know when it will be published, but I know 8 papers will be published by November 09. The bacteria is still there and there is another protozoan. You cant see the protozoa with the regular stain...that is why they state hemeobartonella, because that is what they see. Lastly, they havent named or it would be posted.
I dont really owe you anything, but the reason I am posting this response is because i feel sorry for you. You must really be having a difficult time. I hope things get better for you.
Posted by CD57 (Member # 11749) on :
I think the B/P combo was being used awhile ago. So is the Fry Labs back to that again as you say?
Posted by seekhelp (Member # 15067) on :
Are you referring to me Lou? Just curious.
quote:Originally posted by lou: One in particular seems to have made this his life's work, to hinder and criticize.
Posted by springshowers (Member # 19863) on :
Yes as of now from what I know.. He says that Biaxin Plaquenil is the drug combo that he sees the most success with in his patients.
I am sure and hope he will find more options as he figures more and more out about this infection and infections.
He is always working hard and never has given up. Thats a great thing and i admire him.
Who else do we know of is working daily to find some answers ? I do not know anyone else.?
Even if there are not all the perfect answers right now.. How can anyone put him or his lab down?/
Come on now.? Look at the big picture and quit picking at him.
Esp.. those who do not know the facts.. and near nobody does..
So just be happy someone is out there trying to work on this issue. I do not know how long it will take to find more answers that will be able to be put out there for all of us to be able to take and work into our lives that will help kill this thing..
But lets be supportive.. . ok?
Imagine if he was not doing this? So then what.?./
From what I hear there are very few people or labs looking into the unknown and those are not actively doing it as much as he is.
Be happy.. for it..!.. be glad.
Posted by galehane (Member # 15437) on :
bears yes,i am having a difficult time.A lot of people are. It would be helpful if you could tell us what kind of bacteria and what kind of protozoa have been sequenced.
and
The coccobacilli (suggestive of haemobartonella,which it isnt-just looking like it-) adhering to the red blood-cells are the bacteria?
and
The protozoa needs some kind of new special stain to be visualized?Where is it observed?(your first post might suggest that it is also part of a "mix" adhering to the erothrocytes)
Gale
[ 10-05-2009, 10:25 AM: Message edited by: galehane ]
Posted by kitty9309 (Member # 19945) on :
I would like to know, when Fry determines what these organisms are, will the doctors who ordered the tests be notified in retrospect?
I assume that he has saved the samples and has done additional testing such as PCR. etc.- aside from the smear.
What about the organism described as "intracellular coccobacilli in rings"? Has more work been done on that? It seems this morphology is in the minority.
Thanks for any updates/info.
Posted by SWLisa (Member # 14093) on :
I have seen a lot of LLMDs around the country as well as many holistic doctors who claim to be lyme experts. They all charge 3 - 8 times more than Dr. Fry does to see patients. Most throw unproven protocols at patients and I don't seem them spending time researching the disease at the level Dr. F does.
I am not saying he is perfect, I just started seeing him. But my point is I have spent thousands if not close to 100,000 or more seeing other doctors who I feel have no clue what they are really doing. They aren't bad doctors, they just don't have real scientific data to base treatment on for people who are chronically ill and don't respond to Lyme and co-infection treatment. Treating lyme seems to be a guessing game- you try various abx or abx combos and see which work or don't work. The protocols that people even name after themselves really are only based on clinical experience, not real scientific research. I don't see anything unethical coming out of Dr. F's mouth. He seems pretty straightforward to me and committed to finding answers for people who are really sick. I appreciate that. He isn't promising a cure as several holistic doctors have promised me, if only I could pay 20,000 a month for this and that.
I saw one LLMD who quoted all kinds of statistics to me like 90% of patients get better from this, and 98% get better from his. I know his statistics were ridiculous because I know several people who went to him who were never included in his stats, including me. And when I didn't respond, he didn't include me in his stats and he made me feel as if it was my fault Maybe he was well meaning, but certainly not a researcher.
After dealing with the Lyme community for 10 years and being sick for 20, I am glad to see someone doing some new scientific research in this country. There isn't a lot going on right now....and I certainly don't trust studies from NIH. And to be in Columbia's studies you had to have a positive western blot from Stonybrook. I never met their criteria for a study yet I have multiple positive CDC tests from Lab Corp? It makes no sense to me.
I am glad Dr. F is looking at it from another angle. I might have an answer finally to why I am still sick after so many different treatments - and am hopeful there is something to treat that hasn't been identified before.....
I also don't think it is cool to cut down someone down on the INTERNET where the world can see it when it is a doctor who is trying to do something for sick people. Just my opinion. Discussing is ok, but when someone continually criticizes a particular person or company, it kind of makes you question their motive.
Hope this makes sense, I am tired.......
Posted by galehane (Member # 15437) on :
bears
I dont think you understand what I am trying to say.
a.I do not question that Fry has identified some new protozoa. I hope your info that he is going to publish soon is correct.Also he may have sequenced some of the bacteria he sees- probably different kinds (why would we all have the same-and their morphology seems very different.)
b.The "jump" from identifying a new organism to knowledge about the implications for human health and treatment is very very long,unfortunately.It will take a lot of research in resouceful labs etc to reach conclusions.
c.One thing ,however, I am critical of is the kind of information that "leaks" out about these things.The bio-film thing, for one- but you may, of course see it differently.Is that really of major importance according to your source?
You report that the protozoa is tiny.Compared to what?(A WBC is bigger than the RBCs) where can it be seen?- has it got different forms?Do you know which protozoa it resembles in genetic terms? You may be right that it is because of this organism that the bacteria cant be killed- but why would that be so? (BTW- would you be able to post your smear?) I am afraid that publishing will (hopefully) only be the first step towards research that will be helpful eventually.If this happens Dr. Fry has made a big contribution to.. and helped many people.I believe that it still depends on making the "big boys"take an interest.
d.Apart from that I believe it is very legitimate to be critical and question the observations-for instance; how come the observations are so different for patients who have made smears in both Frylabs and clongen. And one thing should be made quite clear to people/doctors ordering a smear in the lab.It is for research only, and the information regarding findings are not that precise. Gale
[ 10-22-2009, 03:54 AM: Message edited by: galehane ]
Posted by galehane (Member # 15437) on :
some time ago info in this thread seemed to point to a publication(s) about this protozoa/bacteria ........ "Everything that I have stated...I know from the source. I dont know when it will be published, but I know 8 papers will be published by November 09. The bacteria is still there and there is another protozoan." .........
If somebody has heard/found anything please post the info. Gale
Gale
[ 11-18-2009, 11:05 AM: Message edited by: galehane ]
Posted by Lymeorsomething (Member # 16359) on :
Anyone know the price for the new Fry biofilms smear? Thanks.
Posted by galehane (Member # 15437) on :
350 dollars, I believe
Posted by Lymeorsomething (Member # 16359) on :
Thanks gale...just had it done...
Posted by galehane (Member # 15437) on :
too bad that publication does not seem to be round the corner.Me too, because i believed the info here.
however,I believe some info- material has been made by the lab that doctors can have.Maybe that was what was meant above? Gale
[ 11-23-2009, 09:34 AM: Message edited by: galehane ]
Posted by galehane (Member # 15437) on :
I beleive it is like this: the publication of scientific articles in journals is a rather long process, beginning with the announcement that so and so will be published.Announcements like that can be found in relevant journals and medline?- didnt find anything- hope somebody is better at searching? Gale
Posted by kelmo (Member # 8797) on :
Last time we saw Dr. F he was very tired. He's been running all over the country speaking to medical doctors in the field about his findings.
Posted by galehane (Member # 15437) on :
I am aware of the efforts and great work of Dr Fry. Had just hoped the information here was more reliable- or that somebody could help find the publications. Gale
Posted by CD57 (Member # 11749) on :
Is there any update on this? I am still wondering if this is the BLO, and what symptoms it causes.
Does anyone know if it is an aerobe vs anaerobe? Bears?
I think the latest research indicates the Plaquenil, rather than a cystbuster, actually induces cysts!
Posted by CD57 (Member # 11749) on :
Is there any update on this? I am still wondering if this is the BLO, and what symptoms it causes.
Does anyone know if it is an aerobe vs anaerobe? Bears?
I think the latest research indicates the Plaquenil, rather than a cystbuster, actually induces cysts!
Posted by galehane (Member # 15437) on :
no publications in november.Very very disappointing.But the lab has an information folder, that doctors can have.I believe that might be what Bears referred to. I dont think it sheds much light to the questions we are all interested in having answered. Gale
Posted by seekhelp (Member # 15067) on :
Gale, call Dr. Fry and make him release the data to you. Posted by galehane (Member # 15437) on :
Would like to.But they do not discuss that kind of information with patients. Gale
Posted by seekhelp (Member # 15067) on :
I used to want to get a blood smear there, but I have no interest based on what I read here.
Posted by galehane (Member # 15437) on :
I believe that the sad thruth is that until Dr Fry realeases peer reviewed publications, the smears will for most patients be frustrating because of the contradictory-and not always sensible- information that seeps from "lymies" witrh Dr Fry.This is not to be critical of the work done by Fry- this is just what the situation is now. Personally,I dont understand or find the lab`s information policy regarding the smears ok.But that is beside the point. As long as the situation remains as it is people will only be rediculed when contacting docs outside the "box" with these smears. Gale
[ 12-29-2009, 02:06 PM: Message edited by: galehane ]
Posted by galehane (Member # 15437) on :
p.s. On Fry`s website for his research foundation - "the southwest center for chronic disease" under news-a "comming soon" announcement is what you can find.The announcement has been there for quite a while. Gale
Posted by springshowers (Member # 19863) on :
Gale...
Your not happy about anything surrounding this subject and not so for a very long time and yet you keep on saying the same things...over and over about those feelings.
Your ongoing repeats have not been informative or helpful and I also wonder why you take the time to keep it going...
What is your goal? and or what do you expect to gain? I have read the same opinions and statements from you now for a long long time.
Whats up with that?
Posted by joe-nm (Member # 18054) on :
I got bit by a tick and brought the disease back to New Mexico with me. I got so sick that I had hallucenasions(?) and really could not leave my home except to see doctors who did not believe any thing was wrong with me.
If it was not for Dr. Fry, I don't know where I would be. Dr. Fry helped me recover a great deal using his biaxin/plquenil combo.
Dr. Fry is a good and decent man who always spends a great deal of time with my wife and I when we come for an appointment. He also accepts insurance and my insurance company pays for all his procedures.
Please be kind and considerate to Dr. Fry, because if he ever stopped practicing, I don't know what would become of me or where I would go to get my prescriptions.
I hope eveyone, someday, will get cured and feel better.
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