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» LymeNet Flash » Questions and Discussion » Medical Questions » I don't believe in the FL1953 bug

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Author Topic: I don't believe in the FL1953 bug
lymetwister
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At least not for now.

One Dr. has claimed this organism and in all this time, not a single lab other then the Dr. that says he discovered it, tests for it, or even recognizes it for that matter.

What gets me is how many people here believe that they have this infection and now there is a Symptom List for it that once again overlaps with the other lists.

What ever happened to Science ?

Trying to figure out what to treat is next to impossible. Myself and a few others I talk with are having this same line of thought. We don't know what we have anymore. I wish I could speak with the confidence that some of you do as to what I actually have.

Testing is so poor, symptoms overlap, so it's something. Keep playing around with the meds until you Herx yourself to death.

I wonder if it could all just be an overactive Immune system reeping havoc on our own bodies. Antibiotics could do this if I'm not mistaken. But then you stop and do nothing and don't get better either, so what do you do ?

I'm just thinking out loud to everyone. This illness is a freaking disaster. In 20 years as an RN, I have NEVER seen an illness that can affect so many Organs and parts of the body as whatever we all have.

We all have our own stories, many of us overlap so much, but in the end, it seems like alot of Theory to me. I no longer spend tons of money on supplements as they have never done anything for me. Binders, I've tried them all and they havn't helped either.

I've done Salt/c, Rife, IV/Oral ABx, Buhner Herbs, Energy type medicine including ACT.

Desperate to get well, we try anything/everything within our Finances and Abilities.

Where is this Light everyone speaks of ? When I look at the Signatures on here, I'm amazed at the years some of you have done on long lists of Abx.

When I was able to work, I saw some pretty nasty infections. I was the PICC nurse and IV Infusion Specialist for a very big Pharmacy. I worked in ICU's, ER's, Shock Trauma and more.... I have never ever seen an infection that can go on like this stuff. I have seen people die from infection, but they either got well or died, none of this in between stuff.

Lyme, the great imitator. The different Morphologies keep it going supposedly.

I also wonder how much Facebook and the internet makes it look like so many are infected with this, or has it always been ?

It's only been within the last 5-7 years or so that the internet has exploded with Social groups, support groups, etc.

So many out there with MS, Parkinsons. I go into these groups and when I say "You have Lyme", I hear, "No I don't, I have MS", or even the "POTS and Dysautonomia" groups on Facebook say the same thing to me. So, I say, you have POTS ? What is causing it ? I can't straight answers other then they tested positive for it.

I'm just using POTS as an example, but you don't need a tilt table test to confirm it. If you stand up and your heart races >30 beats/min., then you qualify for the diagnosis. Some are ok with that and I bewildered how one could or would stop there for answers.

I guess when the Brain gets involved, thats when people dig deeper. There is nothing out there that fits any of this except Lyme and Co.

Again, just thinking out loud to everyone. Saying some things I've wanted to for a good while but didn't. I'm sure I'll get a few football tackle responses, but so be it. Thats what discussion is all about right ?

This Minocycline is really making my head weird. When I get up, my Achilles Tendons feel like they are going to snap and the pain is a 20/10. All I have to do is walk around for a bit and they loosen up. I wonder why I don't feel dizzy from it like many of you report. It is making me feel pretty sick though. Body aches/pain is way up since being on this. Maybe a few days off won't kill me. Just seems like wasted time while I wait for stuff to clear out or inflammation to come down, or both, or something else.

Hope your all doing well our there in Lyme land. I'm not looking to ruffle any feathers with this post. Just a bit frustrated about all of this and how in the world NOTHING is being done about this stuff.

Ok, enough for now.. !!

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CD57
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What is it that makes you not believe it? they have gene sequenced it per the latest interview I read, and confirmed that it is a cross between a protozoa and a helminth, and that it has been around a LONG time and has picked up genes from humans and other hosts it infects. Publication is coming.

Whether or not it is pathogenic seems to depend on the person/host.

BTW minocycline, per Dr F, has anti-protozoal properties which most don;t realize, he says, including docs. As do a lot of other abx.

You are convinced you have bad babesia, from the posts I have read. What if you have the Fry bug also, or instead? Just a thought. One LLMD on the east coast says she suspects the Fry bug in patients with high babesia titers but negative babs FISH test. The Fry thing also shows up in pictures as adhering to, or inside, RBCs, and is also lining the vessels and capillaries. Similar behavior, preferred food source as babesia and even bartonella.

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lymetwister
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Where are the publications on this FL1953 ? I heard talk about Gene Sequence back in early 2011. Still nothing on the table.

Thats why I said for now, these are my thoughts.

My Babs Titers were just 1:250 when I had the Pos. PCR, but the titers are gone and so is the PCR, so ??

I'm not trying to treat Babesia. I don't know how so many of you guys can handle so many meds at once.

This one drug is all I can handle. I can't imagine throwing something else in to the mix.

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CD57
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No publications just yet. I have read that they are struggling to do this -- needing funds, etc. There are just a few of them, on their own, and from what I have heard, getting something published requires connections to the old boys' network. Kinda like politics and everything else in life. I have a few friends who are docs, and they agree with this statement. You gotta be with the in-crowd. If not, you have a harder time. Interesting to know that docs are up against this too.
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lymenow
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I think even the best Dr's agree that there are many many more undiscovered TBI's on the way. This is just one in a chain of different infections we haven't found yet.

Nothing is on the table because yet this lab is waiting for gov't approval.

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seekhelp
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I know exactly what you're saying. I feel the same way. I tell my wife constantly I'm terribly frustrated because I have no confidence in my illness. It seems like a circle with no end, no definitive answers.

I will never know how so many here say with such sureness symptoms A, B, and C are coming from X illness. Never.

After a while, we believe what we want to I feel to keep our sanity. Compile that with the fact we have NO doctors fighting for us to figure out and it's the only string left to retain any sanity. [Frown]

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seekhelp
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It seems like seeing Dr. K in WA is the only way to precisely pinpoint the problems one has through ART testing. He seems to have this all figured out when I listen to his speeches. It seems like he pronounces more new findings in a week than any LLMD I've seen does in a year! He must be beyond human!
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chastain
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Lymetwister, I understand yr position. I am positive for SO MANY infections I often wonder how I am even alive. A lot of this is conjecture and theory as this point because more research and data are needed to pinpoint exactly what is going on with us.

I think lymenow hit the nail on the head though. I have a friend who is a retired physician and researcher of tick borne diseases and he agrees there are most likely MANY as yet undiscovered infections that ticks can transmit to humans.

In the meantime we kind of are guinea pigs. It really is a trial and error process and it is incredibly frustrating, but we all have to make a choice as to how to proceed with our individual cases. There is no one size fits all answer for us. We all have ot find our own unique path to healing.

I wish you a return to good health. Jess.

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TerryK
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Lymetwister wrote:
I have never ever seen an infection that can go on like this stuff. I have seen people die from infection, but they either got well or died, none of this in between stuff.

People die from the complications of lyme ALL the time. My sister died. Lyme is not listed on her death certificate but there were very strong indications that lyme was the culprit.

Personally I understand your frustration. I was on abx for 5 years and my quality of life improved a great deal but I am still disabled and continue to work on finding out why my family and I are sick.

Even though it is frustrating and difficult and we don't have all the answers what choice do we have but to keep trying? I'm not ready to die yet and prior to treatment I was well on my way.

Terry

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lymetwister
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Terry, I'm not saying to give up for a minute. Not even close.

I'm just throwing my thoughts out there for thought, nothing more. Alot of unknown or we would all be well and not suffering and not looking for these unknowns.

Like Seek says, so many are so sure it's X, Y, and Z.

Def. have to keep going at all costs, just wish we had more to go on. This board is great in so many ways. I've gotten a ton of support just from this site since finding out what appears to be wrong with me.

Again, just starting a discussion on a few things that I've given alot of thought into.

I'm sure many do die from Lyme. Was just saying most of us are in that in between stage with a ton of suffering.

Similar to a slow growing cancer in so many ways.

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surprise
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Well, here is how I am taking my positive Fry test:

I KNOW I have a parasite issue- been treating them on and off for a year, lately ongoing-

So now because of a positive Fry bug, I get various prescription anti- parasite protocols.

Also, 2 LLMD's and myself don't think I have Babesia, however, I am going to start Art and Malarone for Fry bug,
so I guess I'll find out how I react to Babesia drugs
(did fine with Alinia)

And, I believe in biofilm, Fry or not. So, now I take my biofilm busters.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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poppy
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Labs have found unknown critters in my blood and I have tested positive for babesia and lyme in the past. We don't really know everything that a tick can transmit. Then with immune systems not functioning correctly, latent infections resurface. And various bodily systems are out of whack.

The truth is that between the germs of various kinds and the consequences, we are dealing with a very complicated situation. And doctors are working in a black box, aiming at a moving target. When broad spectrum drugs are used, it is hard to say just what infection(s) they are treating.

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Lymetoo
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I agree. Maybe it exists, but are people getting well on the treatment??... that is the big question.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Haley
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I have not read all the responses. I'm sure you are not the only one that has had this thought.

All I know is that this doctor is doing everything he can to find out why people are not getting well. He is unique in the sense that he is an MD and a microbiologist. How many MDs are looking at their patients blood under the microscope? This is why I try to follow what he is doing.

I know that he is making progress based on some of his patients that I have spoken with.

All I know is that I am incredibly grateful for anyone that is out there trying to figure out this puzzle. I give him praise for that.

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Marnie
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Title of your post...me neither.
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tickle
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Lymetwister: Good post. I don't know about the FL1953 bug, but I concur with the rest. This disease, or diseases, are such a confusing maze...

Feels like we just keep on throwing medicines at ourselves hoping for some that 'stick', like throwing spaghetti at a wall.

Research is needed so desperately, but with the conflicting attitudes in the medical community, I worry that solid, unbiased research will ever be accepted and built upon to produce concrete and effective tests/treatments.

Right now even a very reputable independent lab that produces solid and reliable test results has to constantly defend itself to the naysayers. It's breathtakingly bizarre.

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emla999/Lyme
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Lymetwister,

I can relate to how you feel. This past year my viewpoint on chronic infections such as lyme disease, mold toxicity, EBV, CMV, mycoplasma, parasites, mycotoxins, heavy metals and the FL1953 bug has changed quite dramatically.


I tested positive for most of those things listed and for many years I thought that the germs and the topxoins is what caused my illness and I was treated for most of the things listed above with several different substances and various protocols. But in all honesty, after years of treatment I wasn't much better than before I started treatment.


And then this past year, I come to realize that nearly everbody will test positive for some type of germ or some type of toxin if they are tested through certain labs but not everybody that tests positive for these germs and toxins are ill.


Eventually, I begin to wonder why this is the case and I eventually started to approach the treatment of my illness in an entirely different way and and my view of what was the underlying cause of my illness has changed as well. And so far, my health has improved quite a bit.


There is a saying, "Germs don't cause illness........ poor health does."


Now, I don't entirely agree with that statement because I know that some germs can cause illnesses. But just because a person tests postive for chronic Lyme Disease through Igenex or tests positive for mold toxicity via Dr. S's testing or tests positive for the the FL1953 bug via Dr. F's laboratory doesn't, in my opinion, and based upon my own personal experience does not mean that those germs are causing their illness. But rather, the underlying cause of their illness may be due to something else completely unrelated to those germs.


And perhaps, in some people, the underlying cause of their illness may actually be what is allowing those germs to flourish inside of their body to begin with. So, in some cases, if you correct the underlying cause of their illness then perhaps the body will be able to fight off the germs.

.

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annxyzz
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Ditto ... I feel there are more questions than answers. When I read that "Dr X " ADVISES

--------------------
annxyzz

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annxyzz
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Ditto ! I am sick of reading "Dr X " advises blah , blah , when no one gets well with his advice . I do feel people get taken advantage of in desperation.

The fact is that many of us have tried a million things with only marginal improvement because the cure is unknown . Frankly , the pathogens are mysteries and can not be relaibly tested .

I will say that I am intrigued with treating parasites given the info that ticks are infected with them like filaria . I also read a study that showed most CFS patients are infected with LUNGWORM!! I have to wonder if our babesia symptoms are actually lungworm . If parasites are replicating in our bodies with no treatment , then most lyme protocols will still leave the patient sick after wasting years and money on ABX .

I thought the parasite idea was hokey until reading Eva Sapi's report and the study about CFS and lungworm parasite discovery .

This disease is baffling and all we can do is experiment taking calculated reasonable risks .

--------------------
annxyzz

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lymetwister
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I took photos of stuff coming out of me on Salt/c. At the time, I thought they were worms of some sort. Maybe they were, I don't know.

Perhaps parasites are bigger then any of this. It's one of those things that I would think we would see in the toilet without Salt/c and coming out of our skin without Salt/c or if it were in the lung, then perhaps we would cough them up and they would be alive and sqirming around.

I've been all over the board with this infection and as some of you agree w me, there is much still missing and YES, all we can do is continue to try and get well doing different things and with whatever works.

I only know that most of us "Herx" when we do these treatments and it's not just the Toxins from the drugs b/c I've had them on EVERY treatment I've tried above and even now on this Minocycline.

If I threw a Tinadmax in the mix right now, I'd be in the hospital for sure.

I'm taking a 3 day break from the Minocycline. My brain is taking a Major hit.

Glad were all having this discussion without any attacks.

That in itself is a nice change :-)

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bigstan
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Well for that doc to be charging $399.00 per PCR test, he better be seeing something. Or else he would be fraudulently under false pretenses obtaining money.

I know I'm not sending him a dime.

But I do agree with you LT and also your opinions SH.

--------------------
HERX is a Four Letter Word!

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Tammy N.
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Gary, I pretty much agree with you on the picture you outlined above, and I can echo a lot of the thoughts from those who posted in agreement. It seems we are pretty much on the same page.

Your statement "Perhaps parasites are bigger then any of this." I think this may be hitting the nail on the head. I'm starting to believe this may be the PRIMARY reason we are sick and unable to eradicate the other infections.

For me, BY FAR, treating parasites has been the MOST PROMISING treatment. I started about 8 weeks ago and I cannot believe what is coming out of me every day (large adult roundworms and liver flukes. Disgusting!). I'm on a rotation of meds and I am floored that I am finally on the right track. I had no clue I had such a monstrous infection. Never even had GI complaints. My symptoms are now way way down and I am beyond grateful I am tolerating treatment well. I just wish I knew the importance of treating parasites 16+ years ago.

seek - I think you are right. Dr. K is the best. He is brilliant and his ART testing gives insights that conventional labs cannot even devise testing for. Dr. K is the guy that said parasites are an issue for us and need to be treated. Most of the best LLMDs in the country haven't even given this much thought until fairly recently. Now thankfully they are coming along.

Best to you all, my friends.

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poppy
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If the patient isn't cured, blame the doctor? Maybe the guesses of patients are better than the experience of doctors who have treated thousands of patients? Some of these patients are doing things on their own that have no basis in science.

I used to think that because a treatment did not cure me, it wasn't working. Now I realize that it has kept me alive and functioning. Without it, I go downhill quickly. And since I was once told to check in with hospice, this is pretty convincing.

If, on the other hand, patients see absolutely no benefit and they are just as bad on treatment as off treatment, maybe they should move on to some other forum, because tickborne diseases must not be the source of their problem, even with positive tests. Patients are not just passive recipients of treatment; they should actively take a part in the decision-making. That includes deciding when to stop treatment.

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Tammy N.
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Footnote to my thoughts....

Gary - you had an old post with pictures a while ago with a title like something from a nursery rhyme.... something about a fly, "perhaps I'll die" (because one of your dead creatures looked like a fly). Anyway, you were posting pictures of bugs that you were passing in your stool. What were you doing then? Whatever it was, GO BACK TO IT. You were clearly killing bugs. The evidence was right in front of you.

If it wasn't parasite treatment you were on, it still showed you you clearly have parasites I would treat them aggressively. There is no downside. I think this could be your missing link.

All of these different parasites take a very long time to treat. I've heard it can take anywhere from months to years, plus we need lifelong maintenance.

I will not leave this path that I am finally on.

My best,
Tammy

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hadlyme
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Big Stan: The doc isn't asking for $399. for the test, the LAB is. So if you're going to knock a lab for needing money for a test, then you need to include Igenex in your 'asking for money for a test' comment. Do you think these labs can do things for FREE?

I know for a fact that Dr. F uses his own money to do research in the lab. They do have a grant writer researching MORE grants for the lab. They do more studies than just 'FL1953' for lymies! There are TWO huge studies going on right now with ALS studies/grants.

And yes, it's all polictical just like the whole lyme thing. But more and more dr.s and high profile people are getting on board with the findings of this lab.

Fry Labs is NOT trying to find an answer to lyme folks. They are trying to find an answer to chronic diseases.

You ask WHO has gotten better? I for one have.

There's a seminar this Sept that Dr. F and Dr. B are speaking at the same meeting. So, if he wasn't excepted into the 'lyme' community, why would both top doc's be putting on a semiar together!

Stop complaing everyone. This is a disease that is unique to each of us. We find answers that work and go with it. NOT everything will work for each of us the same way. DO I knock what you are doing or question it? No. Should you question what I am doing? No. Can we share what works and what doesn't work? Yes.

If you don't understand something, then learn. That's what this forum is all about. Saying something doesn't make sense to you and airing your thoughts should be based on fact.

I love my life and feel pretty great. I will keep doing what my doc says to do. Yes I am a lab rat if you want to call it that. My first llmd wanted to kill my body with strong drugs back in 1999-2001. Guess I like that I now have a doc that wants to not only treat me, but find an answer to what ale's me. I don't see anything other llmd trying to find answers besides just treating, do you?

Again.... do what your mind and body finds acceptable and go with it.

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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poppy
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Research is not usually the function of doctors in private practice. This is rare. So, be glad someone is doing. Don't expect these doctors to do the job of NIH, however. NIH is not funding treatment research, as they should be. They are still stuck in the "no chronic lyme" groove and who knows when this will change.
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kelmo
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One thing you don't see.... Fry Labs taking out full page ads in newsletters.

Hadlyme said it correctly...this doctor is not seeking a treatment for Lyme. He says he can knock out Lyme in a year. He is trying to find out WHY patients become chronic.

No one is twisting your arm to get bloodwork done there. Whether you believe exists or not is really an arrogant statement. But, it is your right to say it.

I'm not saying you are right or wrong. But, I remember an analogy I heard on this board when I first joined six years ago...

"If you take a bucket of water out of the ocean, and you don't find a fish, does this mean there are no fish in the ocean?"

My daughter is very ill. And sometimes, nothing shows up in her blood. It doesn't mean there isn't anything there. We are all learning. Even the doctors.

What irks me are the doctors who charge $300 per phone consult. Now THAT's robbery.

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Tammy N.
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Quite note from me.... I don't want anyone to misunderstand if I gave the wrong impression. I'm not dissing Dr. F. What I was agreeing with is the tangled web we are stuck in...this soup of illness we have, how frustrating it is and how we can't really related symptoms to a particular pathogen because there is such overlap. I think there are many bugs, known and unknown that may or may not be contributing. I am as disgusted with this disease as everyone else who has tried everything they can think of and are still struggling.

You will not hear me say anything bad about Dr. F or anyone else who is doing all they can to help solve parts of this mystery. I am extremely grateful for their dedicated efforts. And especially when they are finding things that are helping. I am all ears.

I'm sorry if I gave the wrong impression. I'm glad for your post hadlyme, so I can correct any misunderstanding I may have put out there about my own views.

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hadlyme
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Tammy... we all feel frustrated, so I do understand. And with that said, I think really we are at the tip of the 'soup' of pathogens that are out there that bugs carry.

I just pray that we can get answers from the medical field the right way.... that they are concerned about diseases and not making money. I was happy to hear that the F lab camp was getting some influential people on board, which hate to say it, but it's who you know sometimes.

So, Tammy I apologize if I came across harsh, as with any of this, it's like we have some sci-fi disease and that it's a neverending story.

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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Haley
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Hadlyme - can you tell us where that seminar will be? I would be interested in going to that. Is it only for physicians?
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hadlyme
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This is the conference itself, which is for medical personal, but I believe that Dr. B is speaking to the AZ Lyme group also. I'll try and get that info posted too. It's one of the nights of this conference and I believe it's only $10. a person to attend. I am on my work computer and can not retrieve that info right now.

http://researchednutritionals.com/conferences/Decoding%20the%20Mystery%20Sep%202012%20Conference%20Flyer.pdf

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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Laura_W
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gotta agree with annxyzz "This disease is baffling and all we can do is experiment taking calculated reasonable risks"

Thats what I feel like I am doing every time I go to see my dr. We work as a team, and it depends on the day as to who has more knowledge about this darn disease.

I hate new symptoms! I hate wondering and questioning if its lyme. Or if its something else... A co-infection, or something totally different? Is there a need to see a new dr? Or can we just continue to experiment and hope for the best. At what point do you move on.

Sending out warm thoughts and Hugs
Laura

--------------------
10/10 EIA 1.4+, 41 (IGG), 23 (IGM)
Bitten over 20 years ago.
Currently not treating, looking for a Dr who will work with my insurance lol.

More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision.

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hadlyme
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MARK YOUR CALENDAR!
Friday, September 14, 2012

An Evening with Dr.B
Location - Sheraton Crescent Phoenix, AZ
6:30 pm - 8 pm. $10 payable at the door.

AzLDA is proud to sponsorDr. B. for a lecture, a
clinical update of tick borne diseases. It will be pertinent to both the public
and health professionals.

More info will be sent out and highlighted on our website soon.
http://www.azlyme.org/Support%20Groups%20Arizona.htm

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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kelmo
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Oh my gosh, I am so there.

And, for the record. I didn't hear any disrespect spoken here. I think this is a very civil and necessary conversation.

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Razzle
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This is a fantastic thread! Thanks for the great discussion!

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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sparkle7
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I agree with annxyzz.

According to Dr. F - Protomyxzoa rheumatica was genetically sequenced (if that's the correct terminology). It does exist as a new pathogen.

---

Braman: So have you sequenced the DNA of this organism yet?

Fry: Actually weve mapped the genome and filed an IP on that, but weve mapped the genome, yes. And that is how we know where we can place it phylogenetically, and know it is new, and know it is unique.

---

I don't know if we know all that much about it. It might be spread by mosquitoes... not necessarily just ticks according to the interview -

http://www.iadvocatehealth.org/protozoal_infection0.aspx

There might be many reasons why it's not "big news". I believe it took a while before a bacteria was considered a cause of stomach ulcers.

All of this is very frustrating. We really don't know why we are so ill in so many cases. It's hard for people who are well to comprehend what we go through. Thanks to everyone here for all the support.

I know none of us would have chosen to go through this. I wish we would get more support from the world in regards to all we go through. Constant pain & illness is really a kind of torture. I know most of us would do anything we could to get well.

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