CDC and Fry Lab blood smear--weird info!

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
bigdreams87
Posts: 42
Joined: Mon 4 May 2009 23:42

Re: CDC and Fry Lab blood smear--weird info!

Post by bigdreams87 » Wed 13 May 2009 22:20

I met with Dr. Fry last Friday. I brought my smear with me that says "suggestive of haemobartonella or mycomplasma." It took about 30 minutes for me to see him as they were backlogged for the day. I had all my symptoms written out against a timeline along with my travels.

Right off the bat he diagnosed me. He explained that for 13 years he has been trying to figure out why all of his patients are so sick. His lab was completely funded out of his own pocket until the lab became self funding. The past 3 years he has noticed this bug and at first thought was babesia, and then haemobartonella and then this year was able to do DNA diagnosis. I asked if this could be babesia and he said no that it did not match up through PCR test.

He said that it is a red blood cell apicomplexa. He said there is another bartonella-like-organism that it triggers and piggybacks off the parasite, but that the parasite is the main problem. He thinks that I got it when I was in Minnesota (I was camping on the river durring summer) and came home and a couple weeks later got really sick. He said there is about a 2 1/2 week incubation time. He said because I am 21 that my prognosis is good and most of his patients my age turn around within 4-6 months. He has me on zithromax and artesunate as the anti-malarial. He gave me a hand out that said don't eat calcium, magnesium or arginine. He suggests a herpes free diet. He told me if I had this bug for another 15 years it would turn into rhumatoid arthritis.

I have also had chronic gastritis for 10 months, which others with this bug have had. He gave me an antacid and sulfrocate to coat the stomach, which is pretty standard, but it's helping big time :)

I got to see his lab where he showed me the PCR of the bug. He has just hired another Dr from UCI to work full time on the bug. He said he would publish this year and that his foundation website is being developed. Again, this one bug has been his main focus for the last 3 years, completely self funded and he's bringing in more researchers to work on it.

If you have had his bloodsmear and came back positive I would urge you to go see him. He suggested I work with an LLMD so that I don't have to drive to AZ, but I would rather see him since he is working directly on the bug and had made a new small discovery about it the day I was there, but I don't remember what it was :|

I know for a friend the zithromax wasn't enough and he's on biaxin and plaquinil now. They are looking at other new drugs, such as Coartem, that might be effective.

Again, I don't think I have lyme disease, and neither do my two other friends, yet we all have this bug and are all sick with the same symptoms. I think Lyme patients could have this as well, just as they get Babesia... and it may be a reason why you remain sick, just as in my case with the parasite and BLO that it triggers. He said once you get rid of the parasite your immune system can generally take care of the rest.

bigdreams87
Posts: 42
Joined: Mon 4 May 2009 23:42

Re: CDC and Fry Lab blood smear--weird info!

Post by bigdreams87 » Wed 13 May 2009 22:20

I met with Dr. Fry last Friday. I brought my smear with me that says "suggestive of haemobartonella or mycomplasma." It took about 30 minutes for me to see him as they were backlogged for the day. I had all my symptoms written out against a timeline along with my travels.

Right off the bat he diagnosed me. He explained that for 13 years he has been trying to figure out why all of his patients are so sick. His lab was completely funded out of his own pocket until the lab became self funding. The past 3 years he has noticed this bug and at first thought was babesia, and then haemobartonella and then this year was able to do DNA diagnosis. I asked if this could be babesia and he said no that it did not match up through PCR test.

He said that it is a red blood cell apicomplexa. He said there is another bartonella-like-organism that it triggers and piggybacks off the parasite, but that the parasite is the main problem. He thinks that I got it when I was in Minnesota (I was camping on the river durring summer) and came home and a couple weeks later got really sick. He said there is about a 2 1/2 week incubation time. He said because I am 21 that my prognosis is good and most of his patients my age turn around within 4-6 months. He has me on zithromax and artesunate as the anti-malarial. He gave me a hand out that said don't eat calcium, magnesium or arginine. He suggests a herpes free diet. He told me if I had this bug for another 15 years it would turn into rhumatoid arthritis.

I have also had chronic gastritis for 10 months, which others with this bug have had. He gave me an antacid and sulfrocate to coat the stomach, which is pretty standard, but it's helping big time :)

I got to see his lab where he showed me the PCR of the bug. He has just hired another Dr from UCI to work full time on the bug. He said he would publish this year and that his foundation website is being developed. Again, this one bug has been his main focus for the last 3 years, completely self funded and he's bringing in more researchers to work on it.

If you have had his bloodsmear and came back positive I would urge you to go see him. He suggested I work with an LLMD so that I don't have to drive to AZ, but I would rather see him since he is working directly on the bug and had made a new small discovery about it the day I was there, but I don't remember what it was :|

I know for a friend the zithromax wasn't enough and he's on biaxin and plaquinil now. They are looking at other new drugs, such as Coartem, that might be effective.

Again, I don't think I have lyme disease, and neither do my two other friends, yet we all have this bug and are all sick with the same symptoms. I think Lyme patients could have this as well, just as they get Babesia... and it may be a reason why you remain sick, just as in my case with the parasite and BLO that it triggers. He said once you get rid of the parasite your immune system can generally take care of the rest.

Fin24
Posts: 1699
Joined: Sat 8 Mar 2008 20:14

Re: CDC and Fry Lab blood smear--weird info!

Post by Fin24 » Wed 13 May 2009 23:47

a red blood cell apicomplexa
this is now become quite silly

this does not say a thing other than "it may be found in or around red blood cells; it belongs to a group of maybe thousands of organisms, all very different"

its as poor as saying a new animal found is a "forest mammal"--way too general.

from Tulane university protozoology class:
The apicomplexa are an extremely large and diverse group (>5000 named species). Seven species infect humans (Box). Plasmodium, as the causative agent of malaria, has the greatest impact on human health. Babesia is a relatively rare zoonotic infection. The other five species are all classified as coccidia. However, recent molecular data indicates that Cryptosporidium is more closely related to the gregarines than to the coccidia. The coccidia are generally considered opportunistic pathogens and are often associated with AIDS. Several apicomplexan parasites are also important in terms of veterinary medicine and agriculture. Most notable are Babesia and Theileria in cattle and Eimeria in poultry.
http://www.tulane.edu/~wiser/protozoolo ... s/api.html

over 5,000 species so Fry calling this thing "apicomplexa" really narrows it down all right.
there is another bartonella-like-organism
yet another unknown only Fry can find?? and this new thing ( apicomplexa) isnt instead of but in addition to the blo??? and why??? because this maybe sorta new thing is not the maybe blo's he saw for years and still sees as well as the new thingy??

THIS bothers me too
He gave me a hand out that said don't eat calcium, magnesium or arginine. He suggests a herpes free diet. He told me if I had this bug for another 15 years it would turn into rhumatoid arthritis.
if followed for too long, this mineral / amino acid restriction can be dangerous
what is a herpes free diet??? based upon what theory??
and he cant identify what these 2 bugs are (blo and apicomplexa) but he KNOWS what they cause and after a specified many years too??
I think Lyme patients could have this as well, just as they get Babesia
Babs IS tick borne so that cant be the case,if those new things are water borne-you said camping on a river, sorry
Babesia is from the tick bite that may/may not have given a person Lyme

IF anyone ( Lyme or not) have any non-tick illnesses (like maybe this parasite) they are but coincidental and not necessarily linked at all.
His lab was completely funded out of his own pocket until the lab became self funding
not "self funded" my dears, but funded off the backs of anyone sending him their samples along with a hefty check; and those going to him again with a hefty check/bill attached. it would be more correct to say "patient funded" wouldnt it??

So we have not one more thing to go on at all...disappointing IMHO and slightly more annoying to me

sounds a lot like Barnum, waving his cane in front of the magic lab ooohhh aaahhh


GALE what are your thoughts??
F

bigdreams87
Posts: 42
Joined: Mon 4 May 2009 23:42

Re: CDC and Fry Lab blood smear--weird info!

Post by bigdreams87 » Thu 14 May 2009 0:29

Fin,

It's not silly at all, and I don't think you are looking at the entire picture. He's found a new commonly shared bug between many very sick people that he is able to replicate. He's gotten further with it and has figured out DNA similarities (which technically I don't know how this is done) between it and two other organisms: Malaria and Toxoplasmosis. He has tried matching it to known existing bugs and it came back negative. Not only this, his patients get better with anti-malarials.

The reference to the river was being in the outdoors in a bug infested area and being bit by something. It could have been a tick, mosquito, gnat, etc. I will never know. In terms of him finding the parasite in Lyme patients, I do not know the answer to that. I was only suggesting an idea that if Babesia is in ticks, this bug could be as well.

Here are the facts:
- there is a parasite that exists
- he can clone it
- he knows the dna
- he has tried a match to come back negative
- other labs do see it
- it's unpublished

What else do you expect? He's gotten grants and they are studying it... they are working on it... the blood smear says "suggestive of" and is not diagnostic. For those who had all negative anti-body tests it gives us something to work with. It's real and it's in my blood, and now I have something to look forward to and get better with. One friend has been sick for 9 years and bedridden last 2 1/2. Now he can do light exercise, go to movies, etc. Before Fry, he had no hope.

If you want to know all the exact technical properties you will need to wait until he publishes, which I told you he will, and not rely on online discussions as what I say is representative of my visit and experience, but not all the findings he has so far. He may have the ability to show up in this thread and put everyone to shame with his research so far. Sorry, I don't have the answers for you, but looking at the big picture of all of this, and talking to others who are sick with this bug, and that they are getting better and responding, it's enough for me.

Would you rather he not pursue a mystery bug that makes everyone sick? The blood smear is only one of the labs you can get done from his lab. He offers other PCR and antibody tests. So your statement about hard earned money is silly. He was already a functioning lab helping many people diagnose. The point I was trying to make is that identifying this bug has been his main focus and investment.

How many Dr.'s really understand how Lyme works or believe that people can have chronic infections? Not many. Out of those who do how many really really know how it works and aren't trying to toss a nutramedix product at you. If I had to guess there are very few out there who are Microbiologists or really have the experience or know how to understand Lyme. Why is it many don't get better? Gale is oversees and has been sick for a long time with no help from doctors. Dr. Fry is actively pursuing to try and figure out this finding and I am grateful for it. I have too many responsibilities and a life ahead of me that I want to live. I don't have time to be sick.

I would say let the issue rest until he publishes. In the meantime, maybe it would make sense to get the blood smear only*. If you are positive, if you are able you should go see him in person. If you pay cash the visit is only $200. If that's out of the question, just wait until he publishes or if you are positive and sick, try any treatments he suggests. I have been told I am already doing better by my family and friends. I believe to have already had herx reaction from both Zithro and artesunate.

I have faith in Dr. Fry as do many others who were very sick and are now making a turn around.

Fin24
Posts: 1699
Joined: Sat 8 Mar 2008 20:14

Re: CDC and Fry Lab blood smear--weird info!

Post by Fin24 » Thu 14 May 2009 3:11

Here are the facts:
- there is a parasite that exists
- he can clone it
- he knows the dna
- he has tried a match to come back negative
- other labs do see it
- it's unpublished
sorry but NO they arent yet facts

what do I want?? facts would be nice, release of the studies would be better, and less showmanship of grandeur by fry would be super.
the rest is all guessiing and its great you and many have "faith" in this--Im very happy for you ( not sarcasm btw). However for me and others this aint enough

y'know many get better with other dr's guesses too--thats the nature of the thing

I can name hundreds who are very much better after seeing a complementary Dr in my own county here in NJ--he doesnt do a thing like Fry--that doesnt mean either he or Fry are wrong--what it means is WE DONT KNOW
and fyi that same dr cant seem to do a thing for me or my son--like all things Lyme--thats what happens

and to post otherwise is very premature and IMHO not right to even suggest to a reader that we "are onto something" quite yet


by all means, he should PURSUE away--but he should share info and get help for petes sake
in science these days the only ones hovered over their lab benches trying to hide their discoveries from all peeping eyes like we did during finals exams week are those hoping to make big bucks off some grand discovery

and you know, I have ZERO respect or patience for that sort of thing

exclusivity has no place in this--the old " only I can do this, know this, treat this" has got to stop...

you might not have a bit of history -- was his lab really predating the Lyme??

as for sending any samples; not quite yet but thanks for the suggestion!

hiker53
Posts: 246
Joined: Fri 28 Mar 2008 22:14

Re: CDC and Fry Lab blood smear--weird info!

Post by hiker53 » Thu 14 May 2009 3:26

BigDreams87--Did Fry say if he had reported this mystery bug to the CDC? They could indentify it a lot faster than he could. Look how fast the "swine flu" got indentified once reported to the proper authorities.

And how does he know which patients have this mystery protozoa? Is he contacting all patients who had the positive blood smear for "suggestive of myocplasma and hemobartonella" and telling them they may have something other than this?

NO, Fry is not doing that. And to me that is unethical. I pay for a blood smear--get a weird diagnosis, then find out he thinks it is some kind of protozoa and I am not contacted and told I may have this? I am not impressed with his research or his ethics at this point. I even volunteered to send more blood for testing and they said "no". (because I wasn't going to pay for it, but just donate it for his research, but expect him to tell me what he found out).

Also, why is that everyone seems to think that every bug they get from a tick or other insect or water will give them a herx reaction when on antibiotics. Most do not.

Hiker53

hanegalen
Posts: 145
Joined: Fri 3 Aug 2007 16:41

Re: CDC and Fry Lab blood smear--weird info!

Post by hanegalen » Thu 14 May 2009 8:15

Bigdreams

Thank you so much for posting.I believe your information from Fry gives us a very good idea about the status of Frys project. Thank you.

All the oddities and the past aside, I believe the important thing is that (I assume it is correct) Fry has sequenced an (the?)organism.This is something of an accomplishment for a lab that size given the fact that many of the primers for pcr-assays would not be commercially available.

My hope is that this info is/has been passed on to the CDC(but fear it has not), so that research can be speeded up.I quite agree,as always, in this respecr with Hiker.

P.S.
About the morphology.
I think Frys smears may show only part of the entire picture.Clongen and others have observed other "oddities" in wet mounts besides these "coccbacilli adhering to the red blood-cells.It is worth considering the possibility that these "oddities" (in mine,anyway) may be stages/forms of one?-several? parasitic infection(s).

Hope you get better Bigdreams- I shall start experimenting soon,myself.


Gale

bigdreams87
Posts: 42
Joined: Mon 4 May 2009 23:42

Re: CDC and Fry Lab blood smear--weird info!

Post by bigdreams87 » Fri 15 May 2009 4:19

Fin,

I hope all your questions are answered when he publishes.

Hiker,

They are still researching it. He said he is putting up a foundation website and publishing, which obviously anyone who has questions can look at. It was only within the last 30 days that they tried the match? I don't think he's at a point where he can confidently start contacting people. He is not allowed to discuss the results with patients, however you can request that he calls your doctor, which he will do. He will explain what it is and what he knows so far to your Dr. So looking at these facts, I don't think he has done anything unethical. Again in the past he has written "suggestive of" due to the references of literature at the bottom of the smear he has sent to you. Hiker, when I take anti-milarials my eosinophil spike (27%) and I get inflamed. I have been told it can be from debri literally floating around in the blood. Literally after taking artesunate, which has 0 adverse reactions, yet peaks in your body after 15 minutes, I get terrible inflammation inbetween my eyes, in my forehead, I get light headed and I have to lie down. It's a HUGE onset of symptoms unrelated to the symptoms having this bug cause on a regular basis. I do think there is a die off reaction with this bug, at least in me. Both friends have gone through periods of huge inflammation and other new symptoms when starting the antibiotics/anti-milarials. Big mood swings and depression, to tingling on the extremities, rapid onset of panic, chills and hot flashes. My face used to be ghostly white. Now all of a sudden I have color in my face again, am more clear headed and have a bit more energy, all of this happened last December when I was briefly on the artesunate. My Mother, Father and Girlfriend notice a difference in me. I am able to socialize and be goofy around them where before I would feel such in another world and so miserable, I would not say a word. I already feel like more of my old self.

Gale,

If he is able to cross compare, look for a match and clone, I would think he would know the sequencing? I think it would be unwise to assume he would be able to clone a bug without knowing anything about it? He also showed me a very blown up picture with the bug set against fluorescent colors of yellow and orange background and he said this was the DNA. I don't know what this technically is, only telling you what I saw.

He is flying around the country talking about everything so far. Maybe you can get in touch with someone who attends a conference. I will try to find out more in the mean time although I am just happy to be feeling better.

On a side note, my slide is being sent to a pathologist through my insurance so I will get the opinion of both he and my infectious disease Dr at Kaiser.

Thanks

hanegalen
Posts: 145
Joined: Fri 3 Aug 2007 16:41

Re: CDC and Fry Lab blood smear--weird info!

Post by hanegalen » Fri 15 May 2009 7:53

hi Bigdreams


Thanks again for posting the info.
I am not going to dwell on the ethical aspects- only on the info you have provided.
1.the photo you were shown might be from an electron microscope?If so, that is good, because that has been missing for a long time and will provide important info for pathologists, of course.
2.I am by no means an expert-very very far from it- but the things you write about the sequencing/cloning seems to be promising.The genetic sequence of an organism is normally expressed in a very long combination of the essential elements like for example aabbaaacddabcccddaa...If you have the sequence you can pick out a piece of this code and try to match it against an organism(complicated machine). A positive result is expressed on paper with different shades of grey -black colums next to positive end negative controls.I gather that was what you were shown?
I still see our best chance in having the info brough to the attention of the CDC and the like.There may well be a long step from ID to an effective treatment.The sooner resourceful labs are involved the better.

All the best
Gale

bigdreams87
Posts: 42
Joined: Mon 4 May 2009 23:42

Re: CDC and Fry Lab blood smear--weird info!

Post by bigdreams87 » Fri 15 May 2009 10:12

I know he has the attention of the CDC. Sorry I don't have any more on this but I will update everyone as soon as I find out.

Gale I would say treat with the macrolide/antimilarial as it is helping those with this smear. I think that's what is important at this point while we wait for published information.

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