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» LymeNet Flash » Questions and Discussion » Medical Questions » Hot off of the Press Mystery Bug revealed and Treatment plan (Page 1)

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Author Topic: Hot off of the Press Mystery Bug revealed and Treatment plan
feelfit
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I have information that I was asked to share with all of you...here it is.

There is a new test for the mystery bug but DR F may be using it on his own patients first and then others.

Source does not know when the announcement will be publically made.


The bug is a protozoa. It's DNA is very simulair to toxoplasmosis....a very close match, But is NOT Toxoplasmosis.

The drugs being used to treat include: Leucovin and Pyrimethamine which are anti-protozoans. Additionally a sulfadiazine drug and folic acid med.

Thats the end of my news flash. I was told nothing more.

Feelfit

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Keebler
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-

Who is doing this research? Any links to his/her previous works?

Any other countries already treating this?


-

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feelfit
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All I know is that this is the research out of the lab in Arizona who was finding something on red blood cells that they were previously calling hemobartonella/mycoplasma.
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METALLlC BLUE
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I'm very excited about this information. This is a new chapter, if I had to guess.

--------------------
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.

E-mail: [email protected]

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METALLlC BLUE
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Look up the information on Toxoplasmosis. It'll make sense if you've been following this.

--------------------
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.

E-mail: [email protected]

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feelfit
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Luecovin is the folic acid treatment. I was confused about this aspect.

so the Tx Combo is:
Pyrimethamine
Sulfadiazine med
Leucovin

This I am told is only one potential combo, there may be others as well.

Yes Mike I looked up toxoplasmosis and it does make sense and is very exciting indeed.

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METALLlC BLUE
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As soon as you find out more, contact me. I'll be doing my homework quickly on this and I suspect it'll be much easier to make sensible combinations simply based on what "hasn't" been used on patients vs what I've seen who had the F-smear.

In another thread earlier -- two days ago or so, I made this comment.

quote:

I also think we're looking at a very persistent pathogen. It probably is a parasite. I've been on IV Vanco, Oral Pen, Oral Bactrim, Oral and IV Levaquin, Tetracycline, Biaxen/Plaquenil, Azithromycin/Amantadine, and it still showed up on Dr. F's slide.

I then mentioned I was on 6 caps of Artemesiae, 4tsp of Mepron, and 500mg Azithromycin, that I was concerned I wouldn't see progress. No Bactrim or other sulfa medication is being used, yet when I talked to the doctor a couple weeks ago she told me "If we can add Bactrim, I'd be so excited for you, that would be the perfect combination in my opinion, for what you're dealing with."

Now, what clicks with me is that it's the combination that is probably the issue and the narrow spectrum of treatment that this parasite responds to. I know very few people who have been on Mepron and Clindamycin or the other medications. I've always heard of people using one or the other. Occasionally Bactrim and Mepron at high dose were mentioned, but it was rare. These patients usually reported strong results but didn't recover fully.

It must be a very narrow spectrum, and this may be why the approaches are fraught with mixed results, but often strong reactions.

[ 04-02-2009, 05:34 AM: Message edited by: METALLlC BLUE ]

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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.

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feelfit
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Look for Kelmos post tomorrow. She has an appt and said she will post info regarding same.

I know nothing else other than what this person told me anonymously.....I am just the messenger.

Feelfit

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seekhelp
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Thanks Feelfit. You're a miracle worker!!! Now, I wish I knew if I had this bug. Never got a Fry blood smear. [Frown]
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cantgiveupyet
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Yup Metallicblue....makes perfect sense about the similarity to the toxoplasmosis.


Thanks so much Feelfit :-)

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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Myco
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I don't understand. Is Clongen and Fry seeing the same bug? Suggesting the same treatment? I have been following both.

Thanks for any help with this!

Chris

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sparkle7
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I just posted in another thread about:

Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor)

What a coincidence...

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Myco
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Here's an interesting link re: Toxoplasmosis treatment:

http://www.innovations-report.com/html/reports/medicine_health/report-23432.html

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feelfit
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I can't speak for Clongen, this info pertains to the F lab in Arizona.

If you have had a F blood smear and were told that Hemobartonella/Mycoplasma was present, this is the same bug, now identified as a protozoa with a similar DNA as toxoplasmosis.

Feelfit

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feelfit
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Good Link Myco, that article was dated 2003, wonder if they made anymore headway?

Feelfit

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cottonbrain
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wow, thanks for the news!

now i wonder:

there are apparently two different pictures people have reported with the F smears:

the first,(and less common, perhaps?) like mine, shows little black 'dots' that appear to be on the inside of the cell, or at least on the surface, not outside the cell walls

the second type of bugs appear to adhere to the outside of the cell walls

my question is, is this new protozoa only the type of bug that appears outside the cell wall? or both types?

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bettyg
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feelfit, thanks for update; i forwarded your post to my lyme list group fyi ... [Smile]
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asus
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Wonder when hes actually gonna publish the data...
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m0joey
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One of my docs prescribed VRM4 for toxoplasmosis. Will ask my doc to test that for me and see if it comes up even though I don't seem to have toxo
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Hoosiers51
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I wonder if it is more important to get rid of the mystery bug first (as in, could this bug be a 'gatekeeper' for Lyme), or Lyme first. Seems like this treatment wouldn't have much of an effect on Lyme, from what I'm reading.

There is an "alternative" protocol for toxoplasmosis that uses pyrimethamine, leucovin, and either minocycline or doxycycline (instead of the sulfadiazine). I wonder if that would be an option for some people who think Lyme is still a concern and want to treat both at once.

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kelmo
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We see Dr. F tomorrow at 4pm. I am not going to bring this up, but I'm sure he knows someone who watches the blogs.

I know it will be a patient-specific protocol, so we can't put up a blanket treatment.

My daughter just happens to need a refill on some meds, which is the main reason we are seenig him.

But, I'm going to encourage him to take blood and get this show on the road.

Will let you know what he says.

Thanks for the information.

Oh, by the way, Clongen didn't develop this testing on their own. They are using Fry Lab's model. What they have found is the same bug, but they aren't pursuing it since Fry Lab is already moving forward.

Fry has been pursuing this for the last 10+ years. A passion on his own. We've been keeping up with his work for the last 3.5 years. I'm glad for him.

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Michael_Venice
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I wonder if Alinia will/would help with this.

I've been on it for a month, and have had a huge unpleasant herx-type thing happening.

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Gabrielle
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quote:
Originally posted by Hoosiers51:
There is an "alternative" protocol for toxoplasmosis that uses pyrimethamine, leucovin, and either minocycline or doxycycline (instead of the sulfadiazine).

I really do hope that this alternative treatment would also work. I cannot take Sulpha drugs.

Gabrielle

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Hoosiers51
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Gabrielle,

It may be too early for those of us with the mystery bug to even speculate about treatment though. Maybe the combo feelfit mentioned won't work for everyone, and we'll need to send our blood to Fry Labs to find out which drug combo we need.

I don't know, on second thought, if I will be bringing this up to my LLMD just yet, because what if that combo isn't right for me, and I would just be wasting my time on it, feeling worse?

So I was moreso "thinking out loud".....and it might be too early for those of us on the outside to just kind of guess what's right right now.

That's just my two cents and what I've been pondering in regards to this.

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heiwalove
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does anyone know if the fry lab testing for the mystery bug is 100 percent accurate, or close to it? i doubt it, given what we all know about the reliability of even the most sensitive TBD tests, but thought i'd ask regardless because my fry tests came back totally negative. i wonder if this means definitively that i'm not infected with the mystery/toxo-like organism..? (wishful thinking, perhaps..)

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heiwalove
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also, i wonder what people think about the current fry lab tests (which, i gather, have changed since i had their bart and babs test nearly two years ago) vs. the clongen tests. it seems that clongen can test the specific DNA of a whole series of bart and babs genus PCRs? i admit i haven't been following this as closely as i should..

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Gabrielle
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Hoosiers,

You are right. It's too early to jump into a treatment. In any case we should wait until Dr. F. will officially publish something (I hope he will). Then, we should get tested again. Until then, there will be maybe some experience with some of his patients who started the treatment.

Tosho,

Thanks for the great info. It gives me hope to see that there might be alternatives.

Gabrielle

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beths
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In case this helps-

Treatment of choice (with sulfadiazine and leucovorin) for CNS toxoplasmosis. Fansidar (pyrimethamine/sulfadoxine) is not a first line agent for malaria prophylaxis due to high incidence of rash and the availability of better tolerated alternatives (e.g., atovaquone/proguanil, mefloquine, and doxycycline).

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merrygirl
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I have toxoplasmosis, and one of my llmds said that mepron would treat it FWIW.

havent had a fry smear

doing well on bactrim, bicillin, mepron, biaxin, diflucan famvir

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hoot
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My son's doctor (not a LLMD) put him on leucovorin for low folic acid levels. It caused him to have cracking eczema in the bend of his arms. Over the counter folic acid (Intrinsic B12/folate) does not do this.

I can't wait to hear/read more!

Jen

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LittleLymie19
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Are there particular symptoms associated with this mystery bug?
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disturbedme
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Sooo... I have a question......

If I had a positive "Bartonella spp." smear from F labs, is that the mystery bug or is that really Bartonella? Or does the mystery bug just pertain to the tests that said "Hemobartonella/Mycoplasma"???

This is my smear:
http://mysigpictures.homestead.com/files/bart.jpg

--------------------
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My Lyme Story

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lymie tony z
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Sorry, but I believe this is an "Old" advesary.

Perhaps with just a new name but protozoans are known pathogens associated with the co-infections delivered by vectors!

zman

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I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

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charlie
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...since sulfa and folic acid were mentioned, maybe this is part of the key to why bactrim seems to work for many of us despite no pharmacological evidence why it should??

Charlie

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feelfit
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Disturbedme,

I can';t answer your question other than to say that my hemobart/mycoplasma smear looked exactly like your bartonella smear to my untrained eye.

Little black dots attached to the sides of the cell wall.

Feelfit

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feelfit
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Also, as Hoosiers has said, there are potentially several treatment combinations. The one that I posted above is just one of those that my source knew about.

As I understand it, treatment combinatins may be tailor made to the particulair patient by testing their blood.

Again, I am only the messenger.

Feelfit

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Hoosiers51
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Has anyone here taken Mepron and Bactrim together for more than 4-5 months and still tested positive for the mystery bug?

(I'm wondering if maybe Bea's husband did....)

I agree with charlie that I wonder if this is why people respond to Bactrim.

If you look at the regimens lined out for toxoplasmosis encephalitis in AIDS patients, you'll see there are quite a few options, but they are specific and usually invovle at least two drugs.

I've speculated in my own mind if a toxoplasmosis-like organism is at play in tick borne disease patients for awhile. It started with an article I read about toxoplasmosisis' link to psych disorders, and then when I started reading about what Mepron does it began to make me go "hmmm" (and maybe others here have too) just because of the drugs that seem to help TBI patients (clindamycin, Bactrim), and the fact that that parasite is so easy to pick up anyways, I'm sure it has cousins that would be easy to get too.

But there are still other questions, like why wasn't this seen before (and then someone wondered what it is) if it is also in the blood of ALS, MS, etc patients? That's one of my main questions....I'm sure Dr. Fry couldn't have been the first person to see this bug in a smear, but why was he one of the first to wonder what it was? Does it look a lot like something else, so that other scientists just readily dismissed it?

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METALLlC BLUE
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Here is the thing though. The BLO that Dr. Burrascano noted and this pathogen that Dr. F is talking about may not be the same.

Regardless, it doesn't matter to me since if you had the Smeart done, and the DNA testing has been finalized, it's quite an easy conclusion to draw that we have clear visibility and a go-ahead to begin attacking with the help of an LLMD who has been following this circumstance with Dr. F.

[ 04-02-2009, 05:30 AM: Message edited by: METALLlC BLUE ]

--------------------
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.

E-mail: [email protected]

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Hoosiers51
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I agree with Metallic Blue.

I think the mystery bug and BLO have always been separate.

BLO was very clearly described by Dr. Burrascano as a bug that responds to Levaquin in his practice. Then it seems like people started jumping to all sorts of conclusions about "BLO", taking it farther than it should have been taken. (in my opinion)

The whole original point of BLO, (again, in my opinion, because it seems like it began to mean different things to different people), is that some patients who test negative for Bartonella (before all these Fry and Clongen tests became available) respond to Levaquin and/or Rifampin.
One of Clongen's bugs might still be the BLO though.

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hoot
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The reason the mystery bug has not been seen before is that the F smear is a new test with a new stain that is "research only" for now.

Interesting that my son has this bug and has autism. I pray the researchers figure out what it is and what can be used to eliminate it.

Jen

[ 04-02-2009, 09:12 AM: Message edited by: hoot ]

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hshbmom
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Is this announcement an April Fool's joke?
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METALLlC BLUE
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Ok, here is another consideration. If BLO responds strongly in some cases to Levaquin, and patients with BLO also happen to respond well to Bactrim, but often Levaquin and Mepron or anti-parasitic treatments aren't given together, what is the connection, if -- BLO is connected in someway through the Levaquin inhibitory effect on whatever it's killing.

Levofloxacin is a broad-spectrum antibiotic that is active against both Gram-positive and Gram-negative bacteria. It functions by inhibiting DNA gyrase, a type II topoisomerase, and topoisomerase iv[23], which is an enzyme necessary to separate replicated DNA, thereby inhibiting cell division.

The fluoroquinolones interfere with DNA replication by inhibiting an enzyme complex called DNA gyrase. This can also affect mammalian cell replication. In particular, some congeners of this drug family display high activity not only against bacterial topoisomerases, but also against eukaryotic topoisomerases and are toxic to cultured mammalian cells and in vivo tumor models. Although the quinolone is highly toxic to mammalian cells in culture, its mechanism of cytotoxic action is not known. Quinolone induced DNA damage was first reported in 1986 (Hussy et al.)[24].

Bactrim

Co-trimoxazole exhibits a theoretical, although perhaps not a clinical,[1] synergistic antibacterial effect when compared to each of its components administered singly. This is because trimethoprim and sulfamethoxazole inhibit successive steps in the folate synthesis pathway (see diagram below). They did not exhibit synergistic effects, due to the requirement of a 1 in 5 ratio, which was observed in the laboratory. However, in clinical situations the ratio in the tissue was observed to be 1 in 20, resulting in no synergy.
Tetrahydrofolate synthesis pathway

Sulfamethoxazole acts as a false-substrate inhibitor of dihydropteroate synthetase. Sulfonamides such as sulfamethoxazole are analogues of p-aminobenzoic acid (PABA) and are competitive inhibitors of the enzyme; inhibiting the production of dihydropteroic acid.

Trimethoprim acts by interfering with the action of bacterial dihydrofolate reductase, inhibiting synthesis of tetrahydrofolic acid.

Folic acid is an essential precursor in the de novo synthesis of the DNA nucleosides thymidine and uridine. Bacteria are unable to take up folic acid from the environment (i.e. the infection host) thus are dependent on their own de novo synthesis - inhibition of the enzyme starves the bacteria of two bases necessary for DNA replication and transcription.

Now look at the first main grouping on this image belong:

Scroll down to the bottom and look at this chart. On the far left side of the chart, you'll see it's broken down into three categories. The first being: Bikont: Chromalveolate: Apicomplexa

Now these break down further, but notice all the treatments and medications that are listed as you break down the groups.

--------------------
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.

E-mail: [email protected]

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METALLlC BLUE
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What we're seeing is a pattern connecting Babesia, Malaria, Toxoplasmosis, then we're seeing a combination of drugs that are both common and uncommonly given. Often these are given because of antibacterial effects, yet -- we're dealing with a Parasite.

Could the issue simply be a lack of appropriate "narrow" spectrum treatment? We've been taking "buck-shots" aiming with a shot gun at a bacterium when it just happened that those antibiotics also concidentally hit this parasite when we now ought to be aiming with a sniper rifle.

It appears to be a species that has a cross biological pattern between Malaria and Toxoplasmosis, this would mean, the guns you aim have to be specific, antifolates -- Dihydrofolate reductase inhibitor, and Dihydropteroate synthetase inhibitor

These drug combinations of: Pyrimethamine, Sulfadiazine, with supporting potential treatments being: diaminopyridines (Pyrimethamine #), biguanides (Proguanil #, Cycloguanil), Sulfadoxine seem most appropriate for most people, and then altering the treatment slightly for different strains, which would require

Cha Ching:

quote:

Hemozoin inhibitors

Qs: Aminoquinolines
4-Aminoquinoline (Amodiaquine #, Chloroquine #, Hydroxychloroquine) * 8-Aminoquinoline (Primaquine #, Pamaquine)

Qs: Methanolquinolines
Mefloquine # * Quinine # * Quinidine

Others
Halofantrine * amyl alcohol (Lumefantrine #)

PfATP6 inhibitor
Artemisinin (Artemether #, Artesunate #, Artenimol, Arteether/Artemotil)

Other
aminoacridine (Quinacrine) * ubiquinone analogue (Atovaquone) * tetracycline (Doxycycline #)
Combinations Coartem * Lapdap * CDA

Babesiosis:
Clindamycin

Because of the likely rapid rate of resistence, I'll hypothesize that patients who used only a dihydrofolate reductase inhibitor without the other inhibitor, built resistence. Improved quickly, then failed quickly, unless on another drug that accidentally was interfereing with the parasite, like (drum roll), Mepron, Clindamycin, Bactrim etc.

You need: dihydrofolate reductase inhibitor and dihydropteroate synthetase inhibitor plus an additional supporting drug like "Artemesiae, Mepron, -- different drugs that inhibit proazoans along the same genetic hallmark.

--------------------
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.

E-mail: [email protected]

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Buster
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My lyme friend met Dr. Fry the weekend of his lyme conference. Dr. Fry is doing some interesting stuff. I don't know details but it is what I was told.

I look back, there has been A LOT of progress made in the treatment of lyme/co's in the last 3 years.

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Hoosiers51
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hoot,

Thanks, that is what i was wondering and that makes a lot of sense.

Metallic,

Could you restate what you are saying two posts above this one about Levaquin in that first paragraph? I'm confused as to what you're saying.

Are you saying Levaquin and the anti-toxoplasmosis drugs need to be given in combo to beat this TBD syndrome we're struggling with?

I am starting to loose my focus/reading abilities, but I scanned what you said under "Cha-ching" and saw artememisinin there.

I have been thinking artemisinin plays some kind of huge role in this TBD thing for awhile.........I herx like "h-e-double hockey sticks" under Bactrim and artemisinin. Mepron just stirs things up, but provides no relief for me. I have tested positive for lyme/bart hen/babs dun/myco pneu.....but I know there is more to this illness.

I'm glad others are as interested in this discovery as I am.

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Myco
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I have a positive Toxoplasmosis IGG, IGM, had a cat etc... and my LLMD has never specifically treated it.

Hm.....

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METALLlC BLUE
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Hoosier, what I'm saying is Levaquin seems to have no effect on this particular infection. Those who respond strongly to Levaquin are responding to something else, a bacterium, not a parasite.

I'm saying that

quote:

Because of the likely rapid rate of resistence, I'll hypothesize that patients who used only a dihydrofolate reductase inhibitor without the other inhibitor, built resistence. Improved quickly, then failed quickly, unless on another drug that accidentally was interfereing with the parasite, like (drum roll), Mepron, Clindamycin, Bactrim etc.

You need: dihydrofolate reductase inhibitor and dihydropteroate synthetase inhibitor plus an additional supporting drug like "Artemesiae, Mepron, -- different drugs that inhibit proazoans along the same genetic hallmark.

If you try only one or two, and one is in a supporting group rather than the dihydrofolate (reductase or synthetase), it's going to resist treatment quickly. You may note improvement and then failure in the majority.

If the patient is given both folate inhibitors, plus a supportive inhibitor outside the folate family, the next broad spectrum inhibitor would be Artemesiae with Hemozoin inhibitors, or Mepron or a cycline, like Doxy, Mino, Tetra.

It appears that alone, these are mostly worthless, just like with Babesia. So take Babesia treatment, cross it with Malaria's "Folate Inhibitor", and you'll be attacking Toxoplasmosis, if you slightly alter the particular Sulfa drug you use. The Sulfa drug can't just be random, it needs to be as closely related to Sulfadoxine as possible, which explains why Bactrim "helps" but isn't the holy grail.

--------------------
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.

E-mail: [email protected]

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tcw
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While it is good to have some more information about the bug, this is pretty discouraging news with regards to treatment. Presumably the bug is intracellular but not intra-erythrocytic (lives in tissue but not inside RBCs like malaria or babesia). I wonder if Drs. will push the doses of tmp-smz (Bactrim) before trying pyrimethamine/sulfadiazine. That combo carries a relatively high risk of serious (sometimes fatal) complications. Treatment for some of the intracellular parasites like toxo can be a lifetime affair as well. Hopefully that will not be the case here as the lifecycle of this bug is worked out.
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blaze
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My Fry test says I have hemobartonella/mycoplasma. Do all LLMDs know about this yet?
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METALLlC BLUE
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Many do Blaze at least secondhand from other patients. It doesn't mean they're doing anything about it.

--------------------
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.

E-mail: [email protected]

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Alv
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It seems that the treatment has been used on horses but there are some warnings for using in humans.

http://www.wedgewoodpharmacy.com/monographs/pyrimethamine.asp

the article below had another option

http://www.ncbi.nlm.nih.gov/pubmed/8838183

there are ineresting combination for the ones that they can not take Sulfa...( this is in studies for toxaplasma)

http://www.thebody.com/content/art12614.html

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Hoosiers51
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Okay, Metallic, now I get what you're saying...thanks. [Smile] It all sounds logical to me.

tcw, yup, that is what scares me too....long, drawn out treatment that may or may not work.

I guess we just need to know more about the life cycle of this bug. I read a little bit about the bradyzoites (which are like what we call cysts I guess) that form in latent toxoplasmosis. My guess is that we don't need to strive to eliminate everything from our systems, because at a certain point it will go "latent" and no longer appear on our slides.

Obviously what I (and most of us) have are not all in the latent or bradyzoite form, or else they wouldn't have shown up on our smear from Fry Labs.

But maybe the point is treating this infection to get rid of the acute form, and then it will go into a latent form and all will be well. (like in toxoplasmosis....seems like if all you have are the bradyzoites (as 10% of the population does) you are in good shape, just as long as you don't get HIV later in life). (and no, I'm not gonna compare Lyme's effects on the immune system to HIV, because I am under the impression our immunity is much better).

I obviously really don't know that much about all this.....the above is just what I'm guessing from reading on Wikipedia, etc, and a little background knowledge from Biology classes in college.

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hoot
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So before jumping onto the antibiotic merry-go-round I am thinking about trying some natural antiparasitic/protozoan combination for my son.

Has anyone ever tried Artemesia and Clove or Silver and Clove by Bioray? These are multi-herb mixtures (same except the Silver and Clove contains silver and the other product does not).

http://bioray2000.com

Ingredient of the mix:
green walnut hulls
grapefruit seed extract
olive leaf extract
art (annua and absynthium)
clove
silver for the Silver and Clove product

My son can not use these products because he is allergic to nuts (contains green walnut hulls) so I am thinking of making my own mixture with:

grapefruit seed extract
artemesia
clove bud oil
garlic
Sovereign Silver

I wonder if enzymes on an empty stomach might help digest these buggers so the herbs can get in an kick BUTT. [dizzy]

I may ask his doc to layer in some Bactrim at some point (and remove GSE).

Jen

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Truthfinder
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So, does this mean that a new `human' form of cytauxzoonosis (cytauzoon felis - tick-borne protozoan parasite affecting wild and domestic cats) has been ruled out as F's mystery bug?

[ 04-02-2009, 07:32 AM: Message edited by: Truthfinder ]

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

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hoot
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I would ask that question to THE Lab.

According to the article I read, the bug is species-specific. I wonder if this would be true for immunocompromised people, though.

Jen

[ 04-02-2009, 09:11 AM: Message edited by: hoot ]

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METALLlC BLUE
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I think you're all asking good questions. Everytime we get new data, more questions arise.

One key issue is whether deep tissue penetration vs. treating the blood borne variety. This infection may not reside in the blood alone and may be difficult to deal with from an intracellular point.

Other people have brought this up to me, it's not something I considered.

--------------------
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.

E-mail: [email protected]

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METALLlC BLUE
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Also, there have been a number of members here who were very insistent that parasites are critical to resolving some chronic problems that Lyme Disease patients have. I never investigated this -- to be honest. I was only aware of Babesia.

Other members who are more invested in protazoa based infectious diseases may have strong input to add. If anyone knows anyone that follows that, point them to this thread.

--------------------
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.

E-mail: [email protected]

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Hoosiers51
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Speaking of single-celled vector-borne protozoa ("parasites") that can cause symptoms we experience....

I HATE to bring this up, because I don't want to create paranoia, but think about Trypanosoma brucei, which causes Human African Trypanosomiasis (aka African sleeping sickness). This is a VECTOR BORNE (meaning something like a tick, flea, fly transmits it) protozoa that is transmitted by the tietse fly. It can get into the Central Nervous System (into the brain), like all these other infections we are looking into.

It causes daytime excessive sleepiness and night time insomnia. (sounds like quite a few of us....) It also causes confusion, very swollen lymph nodes, and muscle aches. Sometimes it can evade detection in blood smears because it likes to hang out in the CNS as opposed to the blood (sounds familiar, again).

Granted, this disease is fatal without treatment, so I'm sure we aren't suffering from this EXACT disease, but I'm just saying, this is yet another example of a tiny protozoa that we know can be transmitted by insects that can affect the nervous system.

So perhaps the mystery bug could even have similarities to this organism in its taxonomy. Who knows!

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polar blast
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I think that doxy and rifampin cleared my blood parasites but not in the central nervous system..I just took a seven day break from doxy..at the 1 month of 400mg a day..I could not function from the herx and the swollen underarms..it is quite apparent that the doxy is hitting lyme as well as some other microbe...my herx time table is to all over the place to be just lyme..is rifampin close to bactrim? when I talk severe I mean it..so I think that if you test negative in the blood I dont think that it means that it is not in the cns..
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Hoosiers51
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Believe it or not, there was someone on here the other day that posted something scientific saying that rifampin had action against either babesia or malaria.....(or maybe it was just protozoa or parasites).

You might want to do a search and look for that.

Doxy can be used in malaria prevention (prophylaxis) , so it probably has at least some kind of mild action against those types of bugs (though who knows if it is enough to kill them).

Who knows....stranger things have happened.....

I don't know if Rifampin and Bactrim are very close, though they are both used against bartonella.

Bart might cause swollen lymph nodes (if I am remembering properly), so maybe it was instead bartonella acting up for you. (doxy + rifampin treats bart)

EDIT to add: Here is the post about Rifampin and babesia:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/79252#000000

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Myco
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Yes, Doxy also makes me herx like crazy. Perhaps it is an altered form of Mycoplasma?
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LymeMECFSMCS
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How about this Raintree formula? It contains what seem to be some effective anti-protozoals as well as antimalarials, so it seems like it could be good for both babs and the mystery bug;

http://www.rain-tree.com/amazon-antiparasite-support.htm

Seems like that could cover a broader spectrum as Metallic is suggesting, no?

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hoot
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LymeCFIDSMCS--I will check this formula out

Momfromtexas--my son was tested with the full F Ab panel and smear. I think you just need to ask for the smear. My son never had the bart rash but has the mystery bug with no antibodies to any of the co-infections, including bartonella.

I recently asked my brother to have his blood checked by F Lab (and Igenex) because he had the classic red stretch mark rash while we were in high school (over 20 years ago). We are awaiting the results. I will try to remember to report once they come in.

Jen

[ 04-02-2009, 09:09 AM: Message edited by: hoot ]

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kelmo
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We saw Dr. F today. He isn't sure how his information was received by the doctors. But, based on the anonymous source who relayed information from the conference, someone was listening.

At the present, the lab scientists can duplicate the organism (that was a big step). The next step is to get different mediums to grow it (on the way), nest is to test various drugs on those samples.

Based on the story of a person who used to be in our local support group, and has since moved to CO, I suggested an anti-protozoal medication that got rid of their fibro symptoms.

The doc quickly went to his office to research it, came back and said "I'm willing to try it if you are".

It will involve five pills, and will probably lay my daughter out for that time. (I'm thinking the treatment will repeat, but this is what we are trying for now).

I am not going to say the name of the drug because we are using her as a guinea pig. It wouldn't be wise to put it out there and have it bomb, so be patient. If it works well, I'll let you know.

She will choose a weekend this month to take it. Maybe after Easter. We are eager to try it soon, but midterm exams in school are right now, and she can't risk losing any more class time.

After three years of abx, band 41 still shows a strong active infection. It is thought that this protozoa might be the holdout that is resistent to the antibiotics.

I told the doc today that I think I can pinpoint the place where we were infected. We spent a few days in a cabin on a lake in Oklahoma back in 1990.

Three months after that trip, my husband and I came down sick with EBV. That's all they knew what to test for then. We were sick for three years. Got a bit better (although I cycle, and my husband could still sleep a weekend away). But, since then I have had unusual and serious recurring infections.

My daughter was only 1.5 years at the time, but we were all eaten by mosquitoes. I spent time in the lake water skiing, as did my husband. My daughter is the most ill of all of us.

Son was three, at the time, and spent a lot of time outdoors. He has had several bouts of mono.

Dr. F says this protozoa is primarily a water variety.

Will keep you informed.

After

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cantgiveupyet
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WOW, of water variety.....did I just read that....I know i did.

Kelmo- I was also sickened probably within a few hours of swimming in a lake in 2005. I was the only one in my family that swam in the lake that day.

Do you think the infection would hit me that quickly after being in the lake?

edited to add....I was in the lake a few weeks prior too and came down with what the dr thought was bronchitis coming back again...

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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CD57
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Kelmo, great! Your story and your daughter's symptoms seems similar to this recent entry, from LymeMD's blog! Did Dr F say anything about using malarone? Here the LymeMD is conjecturing that his patient never had babesia but had something that went away with malarone!
-----------------------------------------
Fibromyalgia remission with Malarone

I have been treating a 46 year old woman with chronic Lyme syndrome for about 18 months. She resides in Montgomery County Maryland and her favorite hobby is(was) gardening. Her presenting complaints were muscle pain, muscle weakness, fatigue, joint pain, neck pain, headaches- with an exacerbation of pre-existing migraines, night sweats, brain fog with forgetfulness- word recall difficulties- short term memory loss- slow cognitive processing and severe depression.

She in fact had no idea that she might be suffering with chronic Lyme disease when I suggested the diagnosis. She had been a regular patient for several years treated only for migraine headaches. She had not shared her other symptoms with me because she was worried that I would think she was a hypochondriac.

The muscle pain it turns out, was a prominent symptom. She had incapacitating pains in her muscles, especially around her neck and upper back area. Her muscles were knotted and stringy and exquisitely tender. She saw a pain management specialist who diagnosed "fibromyalgia," and treated her with trigger point injections as well as a mix of pain meds.

This occurred during the 6 months prior to the Lyme diagnosis. Looking back, it is now clear that she had suffered with fibromyalgia for 20 years. She did not share her symptoms with others in her life. She blamed herself. Somehow, she believed her symptoms represented a personal failing- as she struggled to keep up with other well functioning people around her. Only by sheer will and determination was she able to create the illusion that she was well, when in fact she was getting sicker and sicker.

Finally, almost inadvertently, she shared her story with me.

Her exam had classic Lyme neurological abnormalities. Her labs were fairly unremarkable. Her IgeneX WB for Lyme showed only a positive IgM 31 band with several other IND bands. She wanted a positive test to be convinced she really had Lyme disease. I explained that the 31 band was highly specific. It took some coaxing, but she agreed to start treatment for Lyme.

She took Amoxil and Biaxin for about one year. She was nervous about changing medications so we kept to this one regimen. Most of her symptoms improved. Overall, she was 60% better. Persisting symptoms included sweats- which thought were due to menopause AND there had been no change in the fibromyalgia piece of her syndrome. I convinced her to try Mepron, believing that she had sero-negative Babesia. Her insurance turned down Mepron so I substituted Malarone, perhaps fortuitously. Follow up labs continued to be seronegative for Lyme disease by IgeneX standards and Babesia. I also ordered a blood wet mount performed at Clongen. Extracellular motile organisms were present.

After 3 months on Malarone she noted that the muscle pain was almost completely gone. After five months on Malarone all signs and symptoms of fibromyalgia were 100% gone. Her knotty,lumpy muscles were replaced with smooth, normal tissues. This is one very happy patient! Her "menopausal" sweats were also gone.

This is conjecture: She never had Babesia. The motile parasites seen in blood wet mounts may have been responsible for her muscle disorder. We known that these parasites do not live in blood or blood cells- they are extracellular. This means they primarily reside in other tissues. Their numbers must be so numerous that they egress into the blood. A likely place for parasites to live is muscle tissue. One must wonder: could fibromyalgia be caused by muscle parasites, at least in some patients?

This case shows remission of longstanding fibromyalgia with Malarone- used in conjucntion with Biaxin and Amoxicillin.
Posted by Lyme report: Montgomery County, MD at 5:26 PM 0

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Hoosiers51
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Thanks for the update, kelmo.

I really hope this new medicine helps your daughter get through the rest of her treatment.


I completely understand if you can't, or would rather not, answer this question....

...the only reason I'm asking is because it is pertaining to two symptoms that have popped up in me that I know your daughter also shares.

One thing is the spine pain.....The spine pain is a fairly new one for me, but when I first got it about 2 months ago, I took special note of it because I remember you are the first one that described this symptom to me, and your daughter had two other of the more unusual symptoms I share (the profuse daytime sweating and the smell associated with it sometimes....like you mentioned the shoes).

So anyways, I had an LLMD phone appointment today. Based on my daytime sweating increasing, (and also I think because this is the first time I really emphasized the spine pain to them, since it has gotten a lot worse), they decided to retreat me for babesia with Malarone (4 pills per day if tolerated), Plaquenil, and Biaxin.

My question is now, retrospectively, does your daughter still think that her sweating is due to babesia? And more importantly....the spine pain, which is getting VERY persistant in me.... Are you guys attributing that to babesia for her still after these new developments?

Part of me is even questioning if I need more babesia treatment. It is really just these two symptoms I think that made the PA switch me to Malarone today.

I will still obviously go ahead with what my LLMD is recommending, but I was just curious if maybe I should in my own mind think that this could be something different.

Thank you if you can help. If not, I understand, I'm just happy and grateful you're updating us with the things you can let us know. It is really encouraging and exciting, so thanks again. [Smile]

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Hoosiers51
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PS---on second thought, I did test positive for babesia, so maybe they are just covering all their bases.

But I am still curious as to what you think caused the spine pain, or if you ever got any answers to that. It could be something besides the mystery bug or babesia though.

My lymph masseuse felt it and said really it could be any infection that was being sequestered in the spine....

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galehane
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Patience?

All the credit deserved to Dr fry for his work and dedication.
This infection,however, affects many people-also a lot not aware of this website and this topic.
The best way to help all these people would be if some major research lab was involved, which would not only speed up research but also spread knowledge about this in a much faster way.This is really not (only) a Lyme issue.
Gale

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bettyg
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as lymetoo, tutu said lately to someone else,

"lyme police here; please delete LAST NAME...:"

use Dr. F only; and F lab !! ".
*******************************

i noticed around 12 people using full last name and MANY were repeat offenders ... hoosiers, hoot, mike, and i think i noticed last name started with

KELMO'S post and majority of them after that ....
so please check every post you made above folks.

i was chewed out royally for using the same thing lately.

so go to EACH post you made showing last name,
click on pencil, 3rd box to right of your name
and DELETE FULL LAST NAME using only initial "F" please.

thanks all; lyme police signing off [Smile]

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Hoosiers51
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Well kelmo isn't a scientist (to my knowledge...aside from the science we've all been forced to learn to deal with this illness), so of course we need to have patience with her!

She is just nice enough to report back (and then of course get hit with a bunch of questions I'm sure).

As far as being patient with F Labs (sorry....what else do I call it?), I think that is in everyone's best interest, because we don't want them to announce something that they aren't sure about, and then have it harm a bunch of people (worst case), or not work, or cause a patient to abandon a possibly helpful treatment (like my babs treatment) in favor of something unproven as of yet.

So it's not really "F" Lab's fault! [Smile]

But in terms of why isn't a major research lab involved....I don't know.

Considering the climate and politics of how infections are treated in this country (it will be labelled anything---autoimmune, a syndrome, psychological, neurological--before they will admit something is infectious), I am not surprised.

"Infection" and "pathogen" seem to be dirty words amongst most doctors (and so perhaps among the scientific community in general?), in more ways than one, no pun intended. In other words, it seems like science doesn't like to admit to infections---they are too paranoid about misdiagnosing or spreading fear and creating "super bugs" by "over-using" antibiotics.

These are all my opinions, but someone can correct me if I'm wrong. That would be my guess on why a major lab doesn't want to touch this research.

Back in the 1940's, or maybe earlier....(I wasn't alive back then so I'm not sure exactly when it was) scientists loved discovering new bugs. But the romanticism is gone. Nowadays, when someone is sick, it's anything but an infection.

So we're lucky for the few doctors/researchers that still pursue this stuff, in my opinion.

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METALLlC BLUE
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Groovy2 mentioned in another thread that a lot of progress is being made using "Primaquine" -- now look up at the list I provided in bold. Notice Primaquine listed?

--------------------
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.

E-mail: [email protected]

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blaze
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quote:
Originally posted by METALLlC BLUE:
Many do Blaze at least secondhand from other patients. It doesn't mean they're doing anything about it.

This is what I have. I know it!

Thanks, Metallic Blue!

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lymie tony z
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Not sure if this was brought up in this thread somewhere or not as I cannot read it all as I am a little sick at present....

However....

There is another bacteria that is cross referenced with Bb.

It is what gives everyone heartburn or ulcers and is located in the gut...

This bug is H-Pylori which is effectivelty irradicated by a combination of Bactrim and Metronidazole,

with an ant-acid, I belive to be, a tablet form of pepto-bismol.

It might be noted that while Bb has been known to "ride on the backs",

of parasites in our bodies, or one of our bugs(or many)have bugs themselves.

This was the reasoning behind initial importance of ridding the body of babesia first,

even though the patient may not have tested positive for this common co-infection.

H-Pylori may be a carrier of other bacteria which leads to the cross referrence in blood tests.

Personally, I irradicated this bug(helixical in shape as well as spirochetes,

way back before I even knew I had Bb, yet I consistently test positive for H-Pylori.

I'm confident that I erradicated H-pylori with the 14 day antibiotic regimen years before my

discovery of Bb because I no longer have to take heartburn medicine/antacids like malox or


tagamet/prilosec, of any kind because I no longer have heartburn/regurge.

Prior to the 14 day regimen I needed some form of antacid constantly, even if all I ingested was water!

I feel there is some as yet undiscovered link with H-Pylori and Bb. There just has to be.

It would be nice if H-Pylori was a "natural enemy", of Bb,

or any one of the co-infections that come along with the TBI's we all suffer from.

My only clue is that, prior to my decline in health.

I was definitely infected with Bb, but perhaps the H-pylori and my own immune system were

battleing the TBD's adequately and when I irradicated the H-Pylori from my system...

a possible "KEY" factor was removed from my own personal equasion!

Thus, leading to exacerbation of TBD symptoms and or further dissemination.

Of course the misdiagnosis and subsequent prescriptions for anti-inflams steroidal and non-steroidal anti-inflams or NSAIDS,

also lowered my immune system aiding and abedding any TBD I was infected with or any

co-infection as well.

I hope this is a link to something that will aid us in irradicating all of out TBD's and I

think should be investigated and studied further.
Of course testing for any of these diseases has got to become more precise and decisive then just

"experimental in nature",

and not proving anything one way or another. This is why funding is paramount for the

scientific detectives to uncover the "mystery illnesses"

that plague us all! For even the western blot for Bb is still experimental!


IMHO
zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

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aiden424
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[QUOTE]Originally posted by aiden424:
[QB] Dr. F says this protozoa is primarily a water variety.


Well unless it was in my drinking water there is no way I was any where near water in April when I got sick. We still get snow here in April. So I may not have it.

--------------------
You never know how strong you are until being strong is the only choice you have.

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