This is topic Hot off of the Press Mystery Bug revealed and Treatment plan in forum Medical Questions at LymeNet Flash.


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Posted by feelfit (Member # 12770) on :
 
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
 
Posted by Keebler (Member # 12673) on :
 
-

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

Any other countries already treating this?


-
 
Posted by feelfit (Member # 12770) on :
 
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.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
I'm very excited about this information. This is a new chapter, if I had to guess.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Look up the information on Toxoplasmosis. It'll make sense if you've been following this.
 
Posted by feelfit (Member # 12770) on :
 
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.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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 ]
 
Posted by feelfit (Member # 12770) on :
 
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
 
Posted by seekhelp (Member # 15067) on :
 
Thanks Feelfit. You're a miracle worker!!! Now, I wish I knew if I had this bug. Never got a Fry blood smear. [Frown]
 
Posted by cantgiveupyet (Member # 8165) on :
 
Yup Metallicblue....makes perfect sense about the similarity to the toxoplasmosis.


Thanks so much Feelfit :-)
 
Posted by Myco (Member # 9536) on :
 
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
 
Posted by sparkle7 (Member # 10397) on :
 
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...
 
Posted by Myco (Member # 9536) on :
 
Here's an interesting link re: Toxoplasmosis treatment:

http://www.innovations-report.com/html/reports/medicine_health/report-23432.html
 
Posted by feelfit (Member # 12770) on :
 
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
 
Posted by feelfit (Member # 12770) on :
 
Good Link Myco, that article was dated 2003, wonder if they made anymore headway?

Feelfit
 
Posted by cottonbrain (Member # 13769) on :
 
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?
 
Posted by bettyg (Member # 6147) on :
 
feelfit, thanks for update; i forwarded your post to my lyme list group fyi ... [Smile]
 
Posted by asus (Member # 13881) on :
 
Wonder when hes actually gonna publish the data...
 
Posted by m0joey (Member # 13494) on :
 
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
 
Posted by Hoosiers51 (Member # 15759) on :
 
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.
 
Posted by kelmo (Member # 8797) on :
 
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.
 
Posted by Michael_Venice (Member # 17254) on :
 
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.
 
Posted by Gabrielle (Member # 5329) on :
 
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
 
Posted by Hoosiers51 (Member # 15759) on :
 
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.
 
Posted by heiwalove (Member # 6467) on :
 
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..)
 
Posted by heiwalove (Member # 6467) on :
 
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..
 
Posted by Gabrielle (Member # 5329) on :
 
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
 
Posted by beths (Member # 18864) on :
 
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).
 
Posted by merrygirl (Member # 12041) on :
 
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
 
Posted by hoot (Member # 19281) on :
 
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
 
Posted by LittleLymie19 (Member # 15610) on :
 
Are there particular symptoms associated with this mystery bug?
 
Posted by disturbedme (Member # 12346) on :
 
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
 
Posted by lymie tony z (Member # 5130) on :
 
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
 
Posted by charlie (Member # 25) on :
 
...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
 
Posted by feelfit (Member # 12770) on :
 
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
 
Posted by feelfit (Member # 12770) on :
 
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
 
Posted by Hoosiers51 (Member # 15759) on :
 
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?
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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 ]
 
Posted by Hoosiers51 (Member # 15759) on :
 
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.
 
Posted by hoot (Member # 19281) on :
 
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 ]
 
Posted by hshbmom (Member # 9478) on :
 
Is this announcement an April Fool's joke?
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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.
 
Posted by Buster (Member # 19472) on :
 
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.
 
Posted by Hoosiers51 (Member # 15759) on :
 
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.
 
Posted by Myco (Member # 9536) on :
 
I have a positive Toxoplasmosis IGG, IGM, had a cat etc... and my LLMD has never specifically treated it.

Hm.....
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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.
 
Posted by tcw (Member # 15698) on :
 
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.
 
Posted by blaze (Member # 16838) on :
 
My Fry test says I have hemobartonella/mycoplasma. Do all LLMDs know about this yet?
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Many do Blaze at least secondhand from other patients. It doesn't mean they're doing anything about it.
 
Posted by Alv (Member # 15192) on :
 
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
 
Posted by Hoosiers51 (Member # 15759) on :
 
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.
 
Posted by hoot (Member # 19281) on :
 
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
 
Posted by Truthfinder (Member # 8512) on :
 
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 ]
 
Posted by hoot (Member # 19281) on :
 
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 ]
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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.
 
Posted by Hoosiers51 (Member # 15759) on :
 
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!
 
Posted by polar blast (Member # 9142) on :
 
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..
 
Posted by Hoosiers51 (Member # 15759) on :
 
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
 
Posted by Myco (Member # 9536) on :
 
Yes, Doxy also makes me herx like crazy. Perhaps it is an altered form of Mycoplasma?
 
Posted by LymeCFIDSMCS (Member # 13573) on :
 
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?
 
Posted by hoot (Member # 19281) on :
 
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 ]
 
Posted by kelmo (Member # 8797) on :
 
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
 
Posted by cantgiveupyet (Member # 8165) on :
 
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...
 
Posted by CD57 (Member # 11749) on :
 
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
 
Posted by Hoosiers51 (Member # 15759) on :
 
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]
 
Posted by Hoosiers51 (Member # 15759) on :
 
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....
 
Posted by galehane (Member # 15437) on :
 
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
 
Posted by bettyg (Member # 6147) on :
 
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]
 
Posted by Hoosiers51 (Member # 15759) on :
 
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.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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?
 
Posted by blaze (Member # 16838) on :
 
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!
 
Posted by lymie tony z (Member # 5130) on :
 
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
 
Posted by aiden424 (Member # 7633) on :
 
[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.
 
Posted by LittleLymie19 (Member # 15610) on :
 
quote:
Originally posted by kelmo:

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

This is very interesting, that Dr. F believes patients could have been infected through water!

Years ago, at the beginning of my health decline, I took a school trip Mississippi, right after the hurricane. Half of the group of us got "water poisoning" and were violently sick for 24 hours. I haven't been the same since.

Hoosiers, you mentioned some symptoms that line up with others that may have this parasite...are there any other symptoms that seem to line up or are similar between patients suspected to have this pathogen?
 
Posted by feelfit (Member # 12770) on :
 
Kelmo,

Thank you for the information. Will look forward to updates in regards to your daughter.

Metallic, I thought the same thing about Groovy2 (Jay) and the succes that he has had with primaquine.

This is all very new and exciting, I hope that some sort of tx plan is revealed sooner than later.

Someone asked what test was done by F in order to get the mystery bug. I had ordered a blood smear for bartonella and babesia and received the Hemobart/mycoplasma report...which is the mystery bug.

Feelfit
 
Posted by tcw (Member # 15698) on :
 
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.

Metallic Blue - I do not think it is likely that the parasite can develop resistance - that would require it to develop a whole metabolic pathway on the fly. It does not seem at this point that the bug breaks down hemoglobin, so the hemozoin disruptors would probably not be much use.

The two most likely drug targets - the tetrahydrofolic acid pathway and the electron transport chain - do not seem to be easily effected. Bactrim is specific for the tetrahydrofolic acid pathway, and atovaquone (mepron) and artemisinin target the electron transport chain. Yet it seems that patients on a Bactrim/Mepron combo are still infected?

The usual treatment for toxo targets the tetrahydrofolic acid pathway also - but at much higher doses that have a increased risk of serious side effects.

I am still not clear on if the two labs are seeing the same thing - the descriptions are very different.

The water borne hypothesis is interesting - does that imply that this is a cyst forming bug along the lines of toxoplasmosis or cryptosporidia (in contrast to zoonotic bugs like babesia or plasmodium).

Whatever this thing is, it is sure physically small - the photos I have seen show a bug that is even smaller than plasmodium, I would guess <1um. It seems a bit odd that it is mentioned as sharing genetic sequences with toxoplasmosis, one of the largest Apicomplexan parasites.
 
Posted by bettyg (Member # 6147) on :
 
02-04-2009 02:45 AM
Profile for bettyg

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, 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]


an easy way to do this so you don't overlook any of your posts on this, is to click on your PROFILE, next to your name.

click VIEW RECENT POSTS

look for the name of this subject and click on every link that appears where you commented on; works great for me since i cant' remember long enough if i was there or NOT [Smile] lol
 
Posted by METALLlC BLUE (Member # 6628) on :
 
More information from someone on Healingwell

quote:

I would have posted about a month ago, but just wanted to wait for the conference. Simply stated...it is a PROTOZOAN. This organism is not a bacteria. It has DNA properties of Toxoplasmosis Gondii and Malaria. It is the "malaria" of North America.

This organism is not seen in the Tropics because it cannot survive at that tempreture. It is a single celled...Apicomplexa. It has a tail and is so small that regular blood sears will not find it. It feeds off arginine and the reproductive cycle is currently unkown.

A DNA match is pending...because this could possibly have already been recognized in the Vetenarian world. It is a destructive pathogen that adheres to RBC's and it believed to be behind the majority of most of our symptoms. Finally, it is thought to live around and in water.



[ 04-02-2009, 09:16 PM: Message edited by: METALLlC BLUE ]
 
Posted by kelmo (Member # 8797) on :
 
Dear God! That's astounding!
 
Posted by CD57 (Member # 11749) on :
 
Oh my goodness! So not necessarily from a tick bite? what on earth are we going to do with it?
 
Posted by hiker53 (Member # 6046) on :
 
Is it the tail that is too small to see in a blood smear or the entire parasite? If it is the entire parasite than what was I seeing in the blood smear from F labs that were attached to the outside of the red cells?

Now I am confused. (not that I wan't confused before)

Hiker53
 
Posted by nomoremuscles (Member # 9560) on :
 
Warning: Don't read if you're really excited about this development.


There must have been many Lyme patients over the years who tested positive and were treated for toxo and others. No? If this were THE answer they would have been shouting, and we likely would have known by now.

How many cures have we seen over the years? In the beginning the problem was that we needed to "treat longer" because Bb was a such slow growing bug. Then when some Lyme patients did not improve, the co-infections took center stage. That was going to be our answer. And after treating the co's, when many still did not get better, flagyl became our next great hope, as it would wipe out the cysts and everyone would be cured. We all know how that turned out. I would like to get excited -- and actually, part of me is -- but part of me says let's just wait and watch and see what happens. We've been down this road before.

Likely this will end up like everything else. It will be miraculous for a subset of patients, pretty good for a bunch more, and worthless for the rest.

I do hope I am wrong, however.

I hope like hell that this will pull each and every one of us out of this mess and return us to our normally scheduled lives. After so many years, I am tired of being disappointed.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Someone else asked me to post this information to help you all further.

quote:

Apicomplexa

http://www.tulane.edu/~wiser/protozoology/notes/api.html

The apicomplexa are an extremely large and diverse group (>5000 named species). Seven species infect humans
* Plasmodium
* Babesia
* Cryptosporidium
* Isospora
* Cyclospora
* Sarcocystis
* Toxoplasma
(much more info at the url)

Apicomplexa is a group. The specific organism has yet to be identified? There is treatment info in there, too. It is from Tulane Univ.


 
Posted by kelmo (Member # 8797) on :
 
We were never bit by ticks. We were eaten by mosquitoes. My daughter had a lice infestation in first grade. Repeated infestation, because her little friend's mother wouldn't buy a kit to get rid of them.

(It's a wonder my daughter has a brain left after seven shampooings with that toxic crap)

Any vector can transmit.

Nomoremuscles--this seems to be a cousin of toxoplasmosis. The DNA isn't coming up completely toxo.
 
Posted by Al (Member # 9420) on :
 
If this is found to be the cause of our problems do we get our money back from the LLMDs?
 
Posted by Hoosiers51 (Member # 15759) on :
 
Toxoplasmosis can even be spread through contaminated meats. Often the culprit is cross-contamination in the kitchen (using the same cutting board for meats and then produce, not washing hands, etc). It isn't true that toxoplasmosis is just a disease people who are changing kitty litter get.

Cryptosporidium is another one that you get from contaminated foods or contaminated water supplies. I studied it in a food safety course I took.(it is on Metallic's list above).

So who knows...if it is water-borne, maybe it doesn't only go directly from the water source to us. So maybe it's not that YOU have to come in contact with the contaminated water, maybe the animals you eat or the food you eat came in contact with it somewhere along the chain of farm to dinner plate.

Again, only about 11% of people have come in contact with toxoplasma (from how I understood what I read), (not sure about cryptosporidium)...so just because you can get something from food or water, don't assume everyone would have had the opportunity to get this, so why aren't we all sick, etc.

It's just another idea.(hope my speculation isn't annoying. I have always been fascinated by biology, and microbiology too now)
 
Posted by seekhelp (Member # 15067) on :
 
Al, yeah, right after the IDSA admits their treatment has been wrong and sends us all checks. [Smile]
 
Posted by Hoosiers51 (Member # 15759) on :
 
Al, those of us who were treated based on clinical symptoms should have realized that this is a clinical diagnosis, and their LLMD's should have been sure to emphasize what "clinical diagnosis" means to the patient, so they are informed of the risks.

Those of us who had very Lyme-specific bands on the Western blot, or CDC positive Western blots, that also had a positive Fry bug could be suffering from both diseases, in the same way that someone can suffer from Lyme and also EBV at the same time.

I hear your frustration though. That is why clinical diagnosises are so frustrating. (and why accurate blood tests are such an ideal thing)
 
Posted by nomoremuscles (Member # 9560) on :
 
I'm going to Europe with my LLMD rebate check. Right after picking up my Lamborghini.
 
Posted by cantgiveupyet (Member # 8165) on :
 
hahaha can I join you nomoremuscles ;-)


On another note would the protozoa cause WBC's to be elevated such as eosinophils. Mine are not elevate but my nuetrophils are so just thinking out loud.
 
Posted by seibertneurolyme (Member # 6416) on :
 
I am going to keep this very short as I am using a hotel computer.

My opinion is that this is a parasite and that it is another coinfection just like babesia or bartonella -- do not think all patients have it.

Hubby talked to someone in the F lab again this morning before our LLMD appointment. I guess he got to the right person because he got more info than I did on Monday -- F lab does have a PCR test for the protozoa but at this time the test is only available for his patients. Could not say when the test would be available to the general public.

I feel that the cryptolepis was working on this protozoa but was not strong enough to kill it even at 15 droppers (1 tablespoon) 3 times daily.

Hubby has been backsliding since decresing his dose of cryptolepis to 5 droppers 3 times daily. Hubby woke up with a mild shaking spell (seizure-like episode Sunday night) -- had not had one of those in about 3 weeks since he got to the higher dose on the cryptolepis. These spells used to happen 2 or 3 times per day.

Hubby and I convinced his LLMD to add plaquenil to his meds. The doc wants to talk to Dr F first before prescribing something stronger. LLMD thinks hubby should know within 10 days if the plaquenil will help. I agree -- hubby had very positive responses to quinine and clindamycin in the past. Also primaquine and chloroquine. But none of those meds killed this protozoa at the doses he took.

Hubby is most likely allergic to Mepron so he can't take Malarone either. Doesn't leave many malaria meds untried.

Note that hubby did have a positive saliva test for toxoplasmosis in February 2008. Diagnostechs lab. Presumably the Bactrim and Alinia he took -- both for 8 months should have killed toxo. But he had the positive bloodslide from Clongen after that. I wonder if that test could have been a cross reaction with this unidentified protozoa?

The 2nd drug in Malarone is a drug specific for toxo -- also a very toxic drug by itself. Alinia is supposedly Flagyl plus a 2nd ingredient.

One comment Dr K at Clongen made has stuck in hubby's mind -- he said that especially since Dr F is using a stain that what you see in the bloodslide pictures is a 2 dimensional image -- not the same as what you see when you look through a scope as in a wet mount as he does -- think this partly explains the difference in their descriptions of this pathogen.

Hubby's current LLMD thinks what Dr F is seeing is BLO -- I don't think so myself. I think that most likely the 2nd pathogen that Clongen has seen which is intracellular is more likely to be BLO. I think this protozoa (seen by both F and Clongen) is something new and different.

I am still uncertain as to whether it actually has a biofilm. I am not sure if LymeMd is correct in assuming that because the pathogen is free floating in the blood and not intracellular that that means it is in the tissues.

Got to go for now.

Bea Seibert

P.S. I think if you are waiting until something is published then it could easily be another year or two until that happens. Hubby is more than willing to be a guinea pig after 8 years and he made sure his doc was aware of this.
 
Posted by bettyg (Member # 6147) on :
 
so many interesting comments; best wishes bea where you are right now.
 
Posted by kelmo (Member # 8797) on :
 
The slides I saw, Dr. F specifically pointed out biofilm surrounding organisms.

If the blood test is offered to Dr. F's patients, we weren't offered it.

The stain used in his testing is patented by Dr. F.

I, too, believe it is in the tissues since my daughter's back pain is mostly in the muscle and connective tissues. It's not nerve, as previously thought.
 
Posted by heiwalove (Member # 6467) on :
 
again, does anyone know how sensitive the F smears are? if one tests negative for the organism via F labs, could one still be infected? i suppose like any other TBI test it's contingent upon what happens to be contained in the particular blood sample drawn that day.
 
Posted by Truthfinder (Member # 8512) on :
 
While searching for a particular alternative treatment for toxo, I ran across an article from March 3, 2008 that states:

quote:
..... a new drug that will soon enter clinical trials for the treatment of malaria also appears to be 10 times more effective than the current gold-standard treatment of toxoplasmosis, a combination of the drugs pyrimethamine and sulfadiazine.

In the March issue of PLoS Neglected Tropical Diseases, a research team based at the University of Chicago Medical Center reports that the drug, known as JPC-2056, is extremely effective against Toxoplasma gondii, both in cell culture and in mice, and apparently without the toxicity associated with the current standard treatment.

The drug works inhibiting the action of the from of the enzyme dihydrofolate reductase (DHFR) that is produced by the family of parasites that includes those that cause toxoplasmosis and malaria, and in cell culture studies, the drug appears actually to kill the parasite, rather than simply preventing its replication.

"JPC-2056 has the potential to replace the standard treatment of pyrimethamine and sulfadiazine. Taken by mouth, is easily absorbed, bioavailable, and relatively nontoxic. In tissue culture and in mice, it was rapidly effective, markedly reducing numbers of parasites within just a few days."

Actually, this is an old drug that has been modified..... full article at:
http://richardgpettymd.blogs.com/my_weblog/2008/03/a-new-treatment.html
 
Posted by jmb (Member # 18338) on :
 
I cannot help to wonder. Babs is said to be self-limiting in immuno-competent people, just like Toxo. What makes the new Toxo-like critter once known as Hemobart/Myco different?

To me it seems that the immuno-competent part is the important part. I am starting to wonder chicken-egg-like on Bb even. Would I even be here now if I had competent immune function before exposure?
 
Posted by adamm (Member # 11910) on :
 
YEah--the fact that F says that this is water-borne is particularly suggestive of it being opportunistic.
 
Posted by lou (Member # 81) on :
 
Yes, another opportunistic infection that some have and some don't have. I tested positive for lyme and saw the ring stage of babesia in blood smear, so there is no question that they were real and not confused with this new bug or bugs. And my more recent blood smear showed small objects apparently adhering to RBCs despite having been on bactrim, mepron, malarone, rifampin, etc. Not combined--separately or with other drugs.

It would not be surprising to learn that there is more than one mystery bug. And that the treatments will not work for everyone. If this is some long drawn out thing again, it will be hard to determine which symptoms belong to persistent lyme or bartonella and which belong to mystery bugs.
 
Posted by sunnymalibu (Member # 9586) on :
 
According to this article toxoplasmosis can live in water, soil and can be transmitted from mother to child.

Newly developed anti-malarial medicine treats toxoplasmosis
March 5, 2008

A new drug that will soon enter clinical trials for treatment of malaria also appears to be 10 times more effective than the key medicine in the current gold-standard treatment for toxoplasmosis, a disease caused by a related parasite that infects nearly one-third of all humans--more than two billion people worldwide.

In the March issue of PLoS Neglected Tropical Diseases, a research team based at the University of Chicago Medical Center shows that the drug, known as JPC-2056, is extremely effective against Toxoplasma gondii, the parasite that causes toxoplasmosis, without toxicity.

"JPC-2056 has the potential to replace the standard treatment of pyrimethamine and sulfadiazine," said infectious disease specialist Rima McLeod, professor of ophthalmology at the University of Chicago and senior author of the study. "The drug, taken by mouth, is easily absorbed, bioavailable, and relatively nontoxic. In tissue culture and in mice, it was rapidly effective, markedly reducing numbers of parasites within just a few days."

Untreated mice injected with the parasite "appeared ill," four days after the injection, the authors note, "with ruffled fur and hunched shoulders." Treated mice remained well.

"Studies in tissue culture found no evidence of the parasite or the plaques they produce 52 days after four days of treatment," said co-author Ernest Mui, a researcher in McLeod's laboratory.

"The absence of growth," the authors write, "indicates that this compound is 'cidal' and not merely 'static' for the active form of T. gondii.

The drug inhibits the action of an enzyme, dihydrofolate reductase (DHFR), produced by the family of parasites that includes those that cause toxoplasmosis and malaria. It is structurally distinct from the human DHFR.

"The drug's effect on the malaria and Toxoplasma enzymes is robust," said McLeod. "It has much less effect on the human enzyme."

The new drug was effective against all malaria parasites, even those with multiple mutations that make them resistant to other anti-folate medicines, suggesting that "this family of parasites, including not just Toxoplasma but also various malaria parasites, will not easily develop resistance," she said.

Toxoplasma infection is "probably the most common parasitic infection in the world, causing very significant disease in those who have immature immune systems or who are immune-compromised," McLeod said. "New medications are urgently needed."

The standard medicines to treat the infection can cause severe side effects and many patients become hypersensitive to them. There are no medicines that can eliminate certain latent stages of the parasite's life cycle. There is no vaccine.

T. gondii infects humans through three principal routes: a newly infected pregnant woman passing the infection to her fetus; consumption of undercooked, infected meat; and ingestion of T. gondii oocysts in food, through accidental contamination from cat litter.

"An infected cat can excrete up to 20 million oocysts over two weeks," McLeod said. "Even a single oocyst is infectious and they can remain infectious in water for up to six months and in warm moist soil for up to a year."

Congenital toxoplasmosis, which occurs in an estimated 1 per 5,000 births a year in the United States, can cause severe vision loss, brain damage and even death. The annual cost of caring for these children may exceed $1 billion.

Also at increased risk are people with compromised immune systems, such as those with cancer, autoimmune disease, AIDS or transplant recipients. Even people with normal immune systems can suffer major organ damage from chronic infections. Eye disease leading to loss of sight is caused both during the primary infection and as a result of infection transmitted from mother to child. Recent epidemics in Surinam and French Guiana have been lethal even for young healthy victims. Studies have also found an association between chronic brain infection with Toxoplasma and diseases such as schizophrenia and epilepsy, although cause-and-effect relationships have not been proven.

JPC-2056 was developed in the late 1980s by teams led by Wilbur Milhous and Dennis Kyle of the Walter Reed Army Institute for Research in Silver Spring Maryland (both now at the University of South Florida), and David Jacobus of Jacobus Pharmaceutical Company. The original version was quite toxic, but the researchers found ways to reduce the toxicity and developed an oral version of the drug. Clinical trials using JPC-2056 to treat malaria are scheduled to begin later this year.

This new class of medicine holds "considerable promise for significant advances in the treatment of toxoplasmosis, which damages the eye and the brain," said McLeod, "as well as malaria, which kills one million children each year."

The National Institutes of Health, Research to Prevent Blindness Foundation and donations from several private family foundations supported this research. Additional authors include Michael Kirisits and Susan Liu of the University of Chicago; Guy Schiehser, Honghue Hsu and David Jacobus of Jacobus Pharmaceutical Company; Wilbur Milhous of USF; Craig Roberts of the University of Strathclyde, Scotland; Stephen Meunch and David Rice of the University of Sheffield, England; J.P. Dubey the US Department of Agriculture; and Joseph Fowble, Pradipsinh Rathod of The University of Washington in Seattle and Sherry Queener of Indiana University.
 
Posted by bears1985 (Member # 17271) on :
 
It is amazing the "speculation" about this bug. Clongen and F Labs are seeing the same bug. F Labs has the patent on the stain...and Clongen has to find a different way stain it.

BLO? What is BLO? Bartonella Like Organism...which is what? Bartonella spp. have tails...wouldnt this mean this organsim is probably what has been the buzz for so long? F Labs has a live video of it running around in the blood and with a "tail". It is also a single celled organism...isn't Bartonella also?

It is already known that this organism feeds off Arginine...it has also been cloned.

I am not saying that Lyme isnt an issue. Lyme has been studied for years and so have co-infections. There have been studies in vivo and in vitro and many years of trial and error. All these infections create different symptoms in each individual. Why do some people get stretch marks and some dont? Why do some have foot pain, drenching sweats, fevers and so on...while others dont. One thing is for sure....we all have massive fatigue and pain. When someone is on 10 different antibiotics for 2-3 years and is not better...there has to be something else going on.

For all the pessimists...thinking negatively will not help your chances of getting well.

For all those who have hope...we have science on our side and people who are really trying to find a cure for us. If the CDC has recognized this as a Pathogen...and a DNA match will soon be made...how much more serious can it be?
 
Posted by tcw (Member # 15698) on :
 
A couple of thoughts - regarding the flagella, if the bug has one that would be unusual, Apicomplexans usually only have flagella during one part of the life cycle, and some have none at all. They can get around just fine without it, they are usually very motile.

Re: biofilms - that would be highly unusual also, what would the function of a biofilm be for a motile, intracellular parasite? Apicomplexans already have a very durable external structure unlike bacteria that use biofilms to protect themselves and adhere to surfaces.

I think that many people may be assuming two things - that the bug is tick borne, and that it is the root cause of some symptoms. I do not think that we know either one right now.

What I do wonder is where the rest of the bugs are located - Apicomplexans are pretty much all intracellular parasites. If one part of the life cycle is found in the blood, where are the other stages?
 
Posted by FunkOdyssey (Member # 15855) on :
 
quote:
One thing is for sure....we all have massive fatigue and pain.
That's actually not true. I am IgM and IgG positive for Lyme and have a CD-57 of 36, and while I have fatigue, CNS symptoms, and heart issues, I have zero pain.
 
Posted by cantgiveupyet (Member # 8165) on :
 
I dont have massive fatigue either. My illness started as neuro (tingling around eyes ,weightloss , severe head pressure, dizziness..sensitivity to light...very vivid vision(things were sharp and crisp)...right side of body numbness..right wrist pain..neck pain. chest pressure...trouble breathing..then moved to the bladder and lower extremities...where the majority of my symptoms are now. Most days my body is more revved up then fatigued.
I didnt have a whole lot of muscle pain and stiffness until about 1- 1 1.5 years into illness.

[ 04-03-2009, 09:52 PM: Message edited by: cantgiveupyet ]
 
Posted by kelmo (Member # 8797) on :
 
SUCH a difference in each person! My daughter has had everything affected but her heart. She is in tremendous pain most of the time.

My son has a friend, who is CDC+ for Lyme, who just moved here from Pennsylvania. She works full time, attends school full time, but she has lost vision in one eye and occasionally has an achey feeling.

My daughter said she would give anything to just be "achey"
 
Posted by blaze (Member # 16838) on :
 
How long before LLMDs will be able to treat us for this bug?

Also, is this new bug accepted by the IDSA and CDC, or are we going to have to continue to see doctors outside the state to receive any treatment? I guess what I'm asking is - did this new mystery bug give what we've been calling 'chronic Lyme' some credence within the medical community?

I have this bug, and when you find yourself gargling with bleach, that's pretty desperate - but I'm not sure what else to do.
 
Posted by Myco (Member # 9536) on :
 
Altered Mycoplasma strain.
 
Posted by LittleLymie19 (Member # 15610) on :
 
That's interesting...my symptoms are similar to cantgiveupyet's.

60 lb weight loss, dangerously underweight, neuro symptoms (mini seizure-like episodes, dizziness, blood pressure regulation issues, visual distortion, etc.), neck pain, upper back pain, left arm pain, chest pain, heart palpitations, issues with regulating the heart beat, shortness of breath/breathing issues, bladder issues, major intestinal issues, paralysis of the gut etc...

Sounds like some of FunkOdyssey's symptoms are similar, with the heart and CNS issues...

I'd like to hear more about everyone's symptoms that they may or may not associate with this bug.
 
Posted by cantgiveupyet (Member # 8165) on :
 
wow littlelymie we do have very similar symptoms.

Do you have all of those symptoms currently? I forgot to add I had sensitivity to light and vivid vision also a month after onset of illness.
 
Posted by aiden424 (Member # 7633) on :
 
I'm confused. First it was thought to be Bart, then mycoplasma and now a protozoa. Do they all look the same under a microscope? Has any studies been done to see if healthy people have this too?

I'm very hopeful that this all works out. But there have been so many twists and turns just in the last four years when I found out I have Lyme that until it's been proven I'm not going to get to excited.
 
Posted by Leelee (Member # 19112) on :
 
I am new to this thread as I have spent the last couple of months trying to get a handle on Lyme and co-infections.

So, is this mystery bug something thought to be prevalent in those of us with Lyme or is it like other cos. and affects some and not others.

Also, I read through this whole thread, but I probably missed this part....are there specific symptoms for the mystery bug? Am I right in understanding one catches it from water? Does it have a name other than mystery bug?

Sorry to be so confused and thank you for helping me.
 
Posted by LittleLymie19 (Member # 15610) on :
 
Cantgiveupyet, those are all things that I'm experiencing now. I've also had other weird symptoms here and there. My hearing is painfully heightened and I've had sensitivity to light as well.

Do you have the GI issues too?

I'm so sorry that you're suffering from this awful set of symptoms as well.

I'm wondering if everyone who has this organism has some level of GI disfunction? Those of you who have tested positive...do you have intestinal issues?

My GI issues became severely worse after I got water poisoning on a trip in Mississippi 3 years ago after the hurricane. I'm wondering if it could have possibly been infected with this parasite.

I just recently had a stool test done by metagenics and they identified a bunch of parasites, but at the end of the list on my test they noted that there was a parasite present that they "were not able to identify". Could this be it?
 
Posted by cantgiveupyet (Member # 8165) on :
 
Littlelymie- I dont have all those symptoms now...most have gone away. Im left with bladder/pelvic, weight loss, some sweating off and on,very very stiff muscles...yes I have GI symptoms , some knee pain on and off.

that is interesting about the stool test.
 
Posted by Robin123 (Member # 9197) on :
 
I wouldn't say I have massive pain and fatigue either. I think we're all presenting differently.
 
Posted by Parisa (Member # 10526) on :
 
The water connection is very interesting as I have always blamed my husband's illnesss on a houseboating trip he took to Lake Mead. He became seriously ill about five weeks later.

He has muscle pain and wasting (some of that has resolved with IVIG treatment which I know is not an option for most), weakness, fatigue, pulmonary fibrosis, etc.

He also tested positive for toxoplasmosis.
 
Posted by Casey Burns (Member # 14611) on :
 
I see no reason to hide this - so here is what my LLND said about this. She attended the conference where this was presented.

For those with the Fry Labs findings of "Suggestive of Mycoplasma/Haemobartonella" in their blood smears - here is some new information that was presented at a recent Lyme conference in Kansas (March 2009) that I just learned from my LLND. Apparently this coinfection is common enough that they decided to isolate it and look at its genome.

It turns out it is not related to Bartonella at all - nor is it even a gram negative bacteria, thus antibiotics would have no effect on it. Instead, it is a protozoan parasite in the Apicomplexa phyla, which include Babesia and Malaria. They have this bug identified down to family, but not genus yet. But it appears closely related to Theileria, which is in the same family. A species of this, disseminated by ticks, causes Theileriosis in cattle, which is widespread in Africa. For now the working name for this bug (until they know more) is "Little Babesia". They should have it down to genus or maybe even species in about a year.

My case of "Lyme" is characterized by recurring fatigue episodes that are unpredictably timed. My Lyme diagnosis was based on a clinical diagnosis but the Igenex results were borderline (only 3 bands well expressed). One of the characteristics of the Apicomplexa is an asynchronous life cycle. If my case was just Lyme my episodes would be predictable. 10 months of increasingly powerful antibiotics with naturopathic support had little effect. Thus I am suspecting that this Apicomplexan is the primary source of my symptoms and who knows - I may not even have Lyme.

With this new information we've made some changes to my therapy. I just started Arteminisin, which is a powerful anti-malarial. If this works broad spectrum against all Apicomplexa then this may be the silver bullet I've been searching for - now 3 years into this! Am also taking a whole host of other things to boost Artiminisin's effectiveness. The other side of my therapy is boosting the immune system (this is working - my CD-57/HNK1 numbers are all very good).

Casey Burns
 
Posted by kelmo (Member # 8797) on :
 
Casey. Thank you for that report. I just looked at my daughter's blood smear to confirm. Two years ago she had it done (before it went public), and her report said Babesia, Bartonella and Theileria.

I had no idea what theileria was, but when I looked it up it said it was found in cattle in Texas.

We made trips to that region every summer, but the summer I'm thinking we were infected happened on the OK/TX border.

We just saw Dr. F and he wasn't ready to do a blood smear yet to DNA her particular protozoa.

I think adding Art is a good idea. I hate to start it because it makes me weepy.

I believe Lymetoo found art to be helpful, and she was from TX. Is that correct, Lymetoo?

Kelmo
 
Posted by lymie tony z (Member # 5130) on :
 
I have to agree with nomoremuscles....

unfortunately....this thread seems to go on and on and on with no clear picture....

I suspect something, and am sorry I wasted my time...as ill as I am.

Partly because of who the contributors are on this thread....

Mostly because of who is NOT!

zman
 
Posted by Truthfinder (Member # 8512) on :
 
Well, it appears that a form of the Cytauxzoonosis protozoa may still be in the running here..... Cytauxzoonosis is caused by the Theileria-like parasites of the genus Cytauxzoon of the family Theileriidae....

(Google cytauxzoonosis Theileria and see how much pops up....)

I don't get the `water' connection, though..... unless perhaps they think bugs like mosquitoes could be carriers?
 
Posted by kelmo (Member # 8797) on :
 
It's always been believed that we were infected by mosquitoes, not ticks. We have never had a tick bite.
 
Posted by feelfit (Member # 12770) on :
 
sorry you're so sick Tony. obviously everyone here is...thus the search for answers. SOB the next time so you don't get so sick and tired of looking at this and the contributors that you don't think much of.

Be well,
feelfit
 
Posted by Alv (Member # 15192) on :
 
This will show why this protozoa bug behaves as T.GONDI!

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=88943&rendertype=figure&id=F2


The article below in treatment section will mention all the treatment that have been mentioned in this thread.BUT artemisin has not been mentioned .It is only about the Drugs.Now I see why Groovy2 is having results with his treatment.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=10885987#id659190
 
Posted by seibertneurolyme (Member # 6416) on :
 
LeeLee and other NEWBIES,

Sorry if you are confused. A very brief history. In the Dr B guidelines you may see some references to BLO or bartonella like organisms. This supposed bacteria has no test and is diagnosed based on clinical symptoms. Primarily G.I. symptoms and neurological symptoms which seem more severe than with just Lyme. In the past treatment was Levaquin or Cipro or Rifampin plus doxycycline. In other words patients were basically treated with bartonella meds.

2 or 3 years ago the F lab in Arizona started offering a blood smear. Based on visual exam (not on antibody or DNA sequencing or PCR) the lab started telling patients they had bartonella or mycoplasma -- both bacteria look alike on a blood smear.

Then about a year ago the lab changed the description to Haemobartonella or mycoplasma.

Within the last few months the rumor was that the F lab had decided it was a parasite/protozoa and not a bacteria that was being seen on the bloodslides.

Also starting last fall a new lab (Clongen) in Maryland also started doing blood smears. The new lab also found what they originally thought was an unidentified bacteria in the blood of many tickborne illness patients. The lab was unable to do 16S DNA sequencing or to culture what they had thought was a bacteria. Now they also believe it is a parasite/protozoa although they have not identified which one yet. Not sure if the lab is still doing any research at this point or not.

Hubby has positive tests from both F lab and Clongen. He has treated for Lyme, Bartonella/BLO/mycoplasma and Babesia. Many symptoms have improved but after 6 years of treatment he is still disabled (sick 8 years). There are many other patients like hubby who have been on many antibiotics and many different antiparasitc meds as well.

I personally think this new protozoa is hubby's biggest issue -- just not sure how to treat it as obviously there is something unique about the pathogen which makes it very difficult to erradicate.

Hope this overview helps.

Bea Seibert
 
Posted by Hoosiers51 (Member # 15759) on :
 
Ouch Tony! If you can't say anything nice about the members on this thread, don't say anything. Thanks.

Also, if one is knowledgeable about taxonomy, they will realize this thread is not jumping around, and that all the organisms we are talking about have many similarities. I think it's a productive thread, and we have lots of fantastic members contributing here.

Yes, artemisinin does make sense. So does Thieleria. So does Toxoplasma. It all makes sense.
 
Posted by Leelee (Member # 19112) on :
 
seibertneurolyme,

Thank you so much for explaining the mystery bug to me. I couldn't have asked for an easier to understand explanation.

I hope that your husband improves. Hopefully with this new understanding of the new protozoa they will also find a successful way to treat it.

Last week I went to a community meeting and a LLMD was the guest speaker. He said there are still so many things to discover about Lyme and co-infections.

Best to you and your husband. Thanks again for the explanation.
 
Posted by Hoosiers51 (Member # 15759) on :
 
To anyone who thinks this thread is off-topic, read this:

http://en.wikipedia.org/wiki/Theileria_microti

Not sure how many are aware of the fact that babesia microti, according to who you ask, doesn't even exist anymore. It's now called Theileria microti. They have changed it's classification. It is more similar to cattle disease than the babesia we have come to know and love.

That means those of us who have babesia duncani actually have more in common with those who have babesia canis (humans and dogs get it) then those who have what USED to be called babesia microti.

BUT, the interesting thing is that in blood tests, t. microti and b. duncani can cross-react.

That should give you an idea of how similar the organisms are that we are talking about.
 
Posted by cantgiveupyet (Member # 8165) on :
 
Thanks hoosiers! I have a positive Babesia FISH....but test negative for WA-1 and Microti IGM and IGG. The LLMD said it was because my body wasnt fighting it, but now I wonder.

Does anyone know if this protozoa could look similar to babesia when they look at it under the microscope?

Im going to post my smear in a little bit.

My gut has been telling me for awhile that I should start malarone again.
 
Posted by Hoosiers51 (Member # 15759) on :
 
I have this theory in my own mind that these parasitic diseases like babesia, theileria maybe....that they are way more common than Lyme in the general population. A lot of people with exposure to babesia are asymptomatic though.

Since not all people with Lyme have babesia, some people jump to the assumption that the babesia genus is rare. Probably not the case.

Those of us who have Lyme (or some other kind of Lyme-like organism, if such a thing exists. Or maybe it's really bb in every case)...it's understandable why we're as sick as we are.

Even those of us who may not have Lyme (or, those who question if their Lyme is gone and they are now fighting something else) can understandibly be sick from these parasitic diseases on their own, but maybe there is still some kind of "pathogen soup" at work, even when Lyme is out of the picture.

Babesia-like organism + Bart or BLO + damaged immunity from Lyme or whatever other stealth virus set this in motion = a very sick person

I just wish there was a better way to know what's what.

cantgiveupyet-- of course don't rule out that it really could be babesia though. (or both babesia AND a separate babesia-like organism)


EDIT: I want to correct what I said about in my above post about the tests cross-reacting. That isn't PROVEN. All I know is that multiple LLMD's have told me that babesia microti (now theileria microti) and babesia duncani probably cross-react in blood tests. One said, "they may" and another told me, "they do cross-react."

This is just a theory though. Lots of things are possible then....like how many other organisms cross-react with these tests? But then, how many don't? Did any of us really have b. microti (now t. microti)? etc etc.
 
Posted by Hoosiers51 (Member # 15759) on :
 
Here's one problem with the Theileria thing: On a smear, you see them INSIDE the red blood cells.

"A definitive diagnosis of theileriosis can be made in the field by demonstrating Theileria sp. parasites within erythrocytes on the Romanowsky-stained blood smear."

(there was also a picture in the article I was reading. They look exactly like what we have on our cells, but they were inside. So they didn't look like the "ring" you see with babesia. Is that just a different stage of the life cycle?)
 
Posted by feelfit (Member # 12770) on :
 
Hoosiers good work!
 
Posted by Hoosiers51 (Member # 15759) on :
 
Thanks feelfit! I hope no one takes me *too* seriously. [Smile]

But I just find this really fascinating, probably because in my heart, for awhile I have known there is more to this, and that it seemed to be related to this artemisinin/Mepron/malarone thing....the fevers, the fatigue, etc.

Here is the article I drew that quote from, about theileria being inside the cells.

The picture I was talking about is the 4th one down, where you can see how the Theileria cervi (found in a white tailed deer!!!!) looks like what we have, but it's inside the cells. So maybe we have something similar, but probably not the exact same thing.
 
Posted by nomoremuscles (Member # 9560) on :
 
quote:
Originally posted by Hoosiers51:
Even those of us who may not have Lyme (or, those who question if their Lyme is gone and they are now fighting something else) can understandibly be sick from these parasitic diseases on their own, but maybe there is still some kind of "pathogen soup" at work, even when Lyme is out of the picture.

Babesia-like organism + Bart or BLO + damaged immunity from Lyme or whatever other stealth virus set this in motion = a very sick person

I just wish there was a better way to know what's what.

I think Hoosiers is exactly right, this is the crux of the problem.
 
Posted by seibertneurolyme (Member # 6416) on :
 
Hoosiers -- you forgot to post the link.

Bea Seibert
 
Posted by Myco (Member # 9536) on :
 
Anyone taking Enula and finding it effective for this parasite?
 
Posted by Hoosiers51 (Member # 15759) on :
 
Yup, I forgot to post the link, silly me.

Okay, I will preface this by saying I don't know much about microbiology, besides what I learned in college (a few science classes including bio), and what I read on Wikipedia, which is mostly the classifications of organisms (taxonomy) and drugs that treat everything.

So I don't know what this stuff is supposed to look like on a slide because I am not a microbiologist. So please forgive my ignorance. Maybe closer they all look all lot different, I dunno.

Here's the link:

http://www.vet.uga.edu/VPP/clerk/siegel/index.php

The 4th picture down is the Theileria cervi which was found in a white-tailed deer.


EDIT to add: The picture I was talking about may be a moot point. Now that I look at it again, with caffeine in my system (thus, more awake), it looks like they do look a little bigger than what we see on the outside of our cells....some of them.

But in one cell they look small like ours (the cell with the long arrow pointed towards it), but in a few of the others (particularly on the left side of the smear) they seem larger.

If you look closely at one of the cells on the bottom right, it appears that the ring-like structure seen in malaria is actually on the OUTSIDE of the cell. Hmm, wonder if that happens with babs or malaria too.

[ 04-05-2009, 06:00 PM: Message edited by: Hoosiers51 ]
 
Posted by hiker53 (Member # 6046) on :
 
Soemtimes it is hard to tell if the pathogen is inside or outside the cell. The cells are 3D, but you can't tell that in a photograph.

Hiker53
 
Posted by blaze (Member # 16838) on :
 
Spirochetes are helical? H-pylori are helical?

Guess what else is helical?...

http://tinyurl.com/cxfklg

Of course, I'm sure this is purely coincidental though...
 
Posted by Alv (Member # 15192) on :
 
http://books.google.com/books?id=yd61229NHUgC

In this book if you click under the PREVIEW THIS BOOK ( I hope the link below will work) ..you will see how the single cells PROTOZOAS are efected by the light.And I just wandered why this protozoas are not beeing seen much in SUMMER by Dr F but mostly in winter.THEY HATE the LIGHT!

In page 39 you will be able to read " ESSENTIAL CONCEPT" and you see how they react toward the light , EMF, nutrition , sugars etc.

http://books.google.com/books?id=yd61229NHUgC&pg=PA10&lpg=PA10&dq=helical+protozoa&source=bl&ots=zBNJztI8rk&sig=JWNLyXc57Uc6JI4ihdc-VLiRAzQ&hl=en&ei=vzPdSfrrOurqlQfsz8n_DQ&sa=X&oi= book_result&ct=result&resnum=4#PPA37,M1
 
Posted by LittleLymie19 (Member # 15610) on :
 
I'm sorry if this has already been answered, but how much does the blood smear cost? Does a doctor have to order it or can a patient?

And does anyone know if Dr. H is still taking new patients?
 
Posted by sunnymalibu (Member # 9586) on :
 
Is anyone taking Pyrimethamine (one of the meds prescribed for toxopoasmosis)?

Littlelymie - is Dr. H.- Holtorf? As far as I know he isn't taking new patients because he's been concentrating on research. Thanks.

[ 04-08-2009, 09:56 PM: Message edited by: sunnymalibu ]
 
Posted by feelfit (Member # 12770) on :
 
Little,

I think it was 295 and it was called a babesia/bartonella blood smear when I ordered it. You have to get the kit from Fry and then have a doctor order the blood draw.

Feelfit
 
Posted by hoot (Member # 19281) on :
 
I was looking at the requisition form today. It is $295 for the smear.
 
Posted by Hoosiers51 (Member # 15759) on :
 
Alv,

Really good find. Very interesting about protozoa being sensitive to light.

Did you read my posts towards the end of Azure's recent thread talking about babesia symptoms?

MariaA and I began discussing about how we both feel our babesia flares in the middle of the night, and then I sort of went off and started talking about how I think other protozoa are active at night too. (makes sense...babesia night sweats, the theory about parasites being more active during a full moon, the insomnia you see with some protozoal infections).

Also, in terms of the EMF thing, it looked like the book said that it was bacteria that respond to EMF's. It seemed to be mentioning light for protozoa. Correct me if I'm wrong though, but that is how I read it. I'll do some more research, because this is interesting.

I believe my EMF sensitivity is caused by some type of bug...not sure yet if it's viral, bacterial, etc. When my chiropractor muscle tested me for things to help my EMF sensitivity, one thing that helped were some homeopathic Virus drops from Desert Biologicals. But maybe those drops had an effect on something else besides just viruses. Not sure.
 
Posted by Hoosiers51 (Member # 15759) on :
 
To those considering getting the smear done from F Labs, if you want to save money, you might want to wait until they offer the testing that will show what drugs help your strain of the bug.

Just my two cents. Might as well wait a little longer and pay for testing that will give you better answers as to treatment.
 
Posted by hoot (Member # 19281) on :
 
Do you have any idea about how long it will be before this enhansed testing is available?

Jen
 
Posted by Hoosiers51 (Member # 15759) on :
 
Jen,

I don't know. I'm not a patient of theirs, so I'm not really in the loop.
 
Posted by TadichGrill (Member # 19679) on :
 
heiwalove you can have this mystery bug and not test positive for it in a Fry Smear. It was explained to me more then one that when testing with a smear your body is like a swimming pool and they can draw from the wrong end of the pool where the bugs are not hanging out.

Hoosiers I also heard it first hand from Igenex that the two kinds of babesia cross test.

Robin and (I only mean this respectfully) with all the coffee you drink how would you really know if you have any fatigue?
 
Posted by tmmort (Member # 14013) on :
 
I have always wondered where/when I was infected.

I did test positive for Lyme and Babesia thru Igenix. I recall LLMD mentioning WA-1.....can someone tell me what this means? I've been treating both for about 4 years...I'm still ill. Never hit babs hard enough as I usually just monotherapy malarone for the babs. I've always felt hitting the babs hard would kill me. I've added in artimisinin pulsing here and there....bad reactions there.

I recall camping in N. California around 1992 and remember swimming in the Russian River. The next day I was severely ill, throwing up the whole ride home, felt like I was gonna die. Remember thinking, this is not right and the two beers I had the night before could never give such a reaction.

This has always been in the back of my mind as to the possible time of infection.

Things that make you go hummmmmmmmmm [Wink]

This is a very interesting thread.

Thanks for posting!
 
Posted by Hoosiers51 (Member # 15759) on :
 
It would be great too if you could let us know how they're doing on it in a month or so.

Hope it helps them!!! [Smile]
 
Posted by louisep (Member # 17272) on :
 
There is more than one mystery bug.

Myself and my partner saw a LLMD in UK who looked at our blood under a microscope. He saw 'strings of pearls' in my partners blood and 'dumbells' and 'triangles' in my blood. He suggested they might be Lyme.

We spoke to the doc at Clongen labs last week and he said he is seeing these exact same things in peoples blood. They are not Lyme and not the Dr. F mystery bug? So what are they? Parasites?

I am very worried about these critters at the moment as they were not hard to spot under a microscope - plenty swimming/floating around.

I also have the Dr. F mystery bug attached to blood cells. I'm not clear on whether I have Lyme or not as my symptoms aren't typical.

Lymemd recently commented on a number of mystery bugs being seen in peoples blood.

http://lymemd.blogspot.com/2009/04/wet-mounts.html
 
Posted by Mo (Member # 2863) on :
 
wtf??

i haven't been able to get online on account of my son's chronic and severe tbd illness(es) of which resolve is not on the horizon, and here's this riveting post with 160+ replies about a new organism.

i cannot possibly sift thru this whole thing, so would someone who has been following the thread be so kind as to give an outline or synopsis of the developments so far?

it may help others just tagging on to the thread as well.

160 posts is allot to read.

which llmd's are responding to it so far, just doc f?

thanks for any clarification,
mo
 
Posted by Alv (Member # 15192) on :
 
Ok ..MO .This BUG is a protozoa that act as Toxaplasma GONDI.

The treatment is still a trial and error to the patient and see what works and what not.So far there is no protocoll established.

So antiparasitics helps.Not eradication treatment knowns so far.
 
Posted by kelmo (Member # 8797) on :
 
Just an update on what my daughter took. We had decided to give Ivermectin a try. Insurance would only allow five pills every 90 days.

So, she took the five pills in one dose early friday morning.

We expected some severe side effects from the drug.

So far, there hasn't been much difference. Yesterday was a fairly good day, today a lot of pain.

It's hard to know without a bloodtest if this is working, but according to symptoms, nothing has impressed us.

So, that was the drug we were experimenting with. Worked wonders for another woman, with my daughter, nada.

This is all so personal.

Staying on mino/plaquinil until Dr. F does a PCR test on her blood.

I will see him on Wednesday for my issues. Will let you know if there is any news.
 
Posted by Tumble weed (Member # 15362) on :
 
Ivermectin is cheap at a farm store it is sold as a wormer
 
Posted by m0joey (Member # 13494) on :
 
Ivermectin is also used to treat cryptostrongylus pulmoni,which was found in 66% of CFS patients:

http://www.anapsid.org/cnd/diffdx/klapow.html

Supposedly, Dr. Klaplow is presenting another bug at the LIA conference in June. If the same treatment hits both the mystery bug and these mutant roundworms, it would seem to me that parasites are at least a huge part of the remaining puzzle
 
Posted by kelmo (Member # 8797) on :
 
Just an afterthought...

My daughter has had unrelenting pain today. It wasn't just in her back, it was all over pain.

That's rare for her.

We also concluded that it is day four after taking the new medication.

Day four is always a herxing day for her.

So, maybe it's hitting something.

I'm sure it's not the entire pathogen infection, but it's another knockdown, bringing us closer to remission.
 
Posted by asus (Member # 13881) on :
 
So... umm... are any of the smears from Fry actually bartonella? IIRC you *can* bart on a slide too right? How is he differentiating here...
 
Posted by kelmo (Member # 8797) on :
 
Good question, I'll ask him.
 
Posted by asus (Member # 13881) on :
 
Thanks Kelmo!
 
Posted by nellypointis (Member # 1719) on :
 
quote:
Originally posted by kelmo:
So, maybe it's hitting something.

The Russian dolls concept of larger bugs sequestering smaller ones? For eg: parasites (like amoebes) infected with bacteria or/and viruses.

So killing the larger ones could actually release the smaller ones into one's bloodstream

Nelly
 
Posted by sizzled (Member # 1357) on :
 
Is this the same thing as EPM in equines?

Equine Protozoal Myelitis?
 
Posted by joysie (Member # 11063) on :
 
I wondered that (about EPM) myself. I have also read somewhere that babesia equi can infect humans. Living with horses makes me think this way....but I may be nuts [Smile]
 
Posted by Alv (Member # 15192) on :
 
No Joysie you are not nuts..read below..

http://www.personalconsult.com/articles/babesia2007update.html
 
Posted by galehane (Member # 15437) on :
 
Many many people are sick and nobody seems to take an initiative to get some qualified labs to determine the pathogene?
Doctors who order smears and get these results should contact their state lab.
gale

[ 04-14-2009, 09:18 AM: Message edited by: galehane ]
 
Posted by lymie tony z (Member # 5130) on :
 
Aw, Come'on Blaze....

Helical Antennae!???

Yeah, Maybe...but we're not talking about antennae here...we're talkin about the whole body of the pathogen being Helixical!

Not it's antennae!

OK...?
I know I know!

zman

[ 04-14-2009, 09:43 PM: Message edited by: lymie tony z ]
 
Posted by lymie tony z (Member # 5130) on :
 
Kelmo,

I get those kinds of pains periodically and most times, whenever I am treating this disease.

It's kind of an all-over-ache like whenever one would get a

"cold in their back" kind of ache!

Except it's all over the body!

As opposed to a "sharp accute type pain", correct?

Am I describing, what it is your daughter is experiencing?

If so, then I might suggest,

from my experiences, it is exactly what you are describing as being a, "J-Herx"

....precisely on the fourth day of medication...

She's kind of lucky that way..."sort of", to be, that consistent, with a medication induced herx!

I seem to have that distinction as well.

So I rather know what's going to work and what isn't, early on, as well.

In Most Cases, that is.

This is why I believe I still have a spirochete load...mainly because,

I've never been on an IV ABX, strong enough or long enough,

to be rid of the dang chetes.

I believe, even one left over chete, can multiply,

given enough time in between IV antibiotics, to cause relapses.

Unfortunately, I do believe that the parasites, either mentioned in this thread or others already known,

may in fact, be responsible for taxi-ing around these smaller pathogens(bacteria),

as "bugs with bugs", which will, I'm confident, someday be, elucidated or expanded on.

We just need the money! Going to the "RIGHT" laboratories!

zman
 
Posted by seibertneurolyme (Member # 6416) on :
 
Kelmo,

I am not surprised the Ivermectin did not help significantly. That is a common livestock worm medicine. Not used to treat blood parasites. It takes a special class of meds (antimalarial meds) to treat something that is bloodborne rather than in the G.I. or tissues. Regular worm medicines do not have the same method of action as malarial drugs.

Many people do also have G.I. parasites -- hubby treated for that years ago but had zero improvements other than with G.I. symptoms. Has actually treated for G.I. parasites more than once during the course of his illness. These type parasites are more opportunisitic -- easier to contact in people with weakened immune systems.

Bea Seibert
 
Posted by eagle (Member # 19278) on :
 
quote:
Originally posted by galehane:
Many many people are sick and nobody seems to take an initiative to get some qualified labs to determine the pathogene?
Doctors who order smears and get these results should contact their state lab.
gale

Gale, can you elaborate? Do you mean Fry lab results too?

I'd think a government lab would merely scoff at a blood smear with some tiny black specks. Or are they required to follow up?

I do agree that it's disappointing that many of us have paid a few hundred $ for the Fry blood smear, only to later find out online through word-of-mouth that we've been misdiagnosed with Bartonella. I've called Fry lab recently and no one will discuss my results with me.

I can understand Fry not sharing the details of what they are finding. However, I do think it is irresponsible that the lab does not send out a notification to those who have gotten the smears that what was previously reported as Bartonella or Hemobartonella has possibly been mislabelled and is currently being researched.

I wonder how many patients may misdiagnosed and are doing needless bart treatment based on their Fry results?
 
Posted by hiker53 (Member # 6046) on :
 
I personally do not understand Fry Labs not reporting their results to the CDC. This is not a game and the CDC has the qualified people and the technology to get the pathogen identified faster than Fry Labs. This should not be about who gets the prestige of identification when it comes to people's health.

Some of the Fry smears that are reported as Bart or Hemobart or mycoplasma may indeed be just that.

Hiker53
 
Posted by hoot (Member # 19281) on :
 
The bugs that have a specific name probably are for the patients that have antibodies in the blood.

hoot
 
Posted by lou (Member # 81) on :
 
Does anyone here really think that the CDC would act on this information? Or act positively? What has happened in the past is that the CDC/NIH immediately puts out an article denying whatever new has been found. There are many examples of this in tickborne diseases.

So, accusing any small lab of being irresponsible in not reporting to CDC is not useful.

If you want to do something to move this along faster, find someone with a lot of money that will fund a big study.
 
Posted by Hoosiers51 (Member # 15759) on :
 
....Or a university student (probably graduate or PhD level) or professor you know who is interested in doing new research. It would probably have to be at a major university.
 
Posted by lymie tony z (Member # 5130) on :
 
There's just not enough known,

about ANY of these TBD's, to call one common and another "hot off the presses NEW"!

I mean really...come on...all this junk is a "MYSTERY" now, isn't it!

zman
 
Posted by hiker53 (Member # 6046) on :
 
Actually I have tried to find people interested in studying this bug and have sent samples to the University of Illinois. The researchers most interested are in the veterinary or agricultural departments and won't deal with human blood. So, I have tried. Have you?

However, I still think it irresponsible for a doctor who find something he thinks is new and shows up in a lot of blood smears not to report it to the CDC.
 
Posted by m0joey (Member # 13494) on :
 
I know many here don't put much stock in energetic medicine, but for those that do, I think it is worth noting that my energetic practitioner took a vial of my blood to test for bugs, and found a strain of a bug with frequency like babesia that wasn't a match for any of her or my babesia vials, including my babesia mix. This was then treated energetically.

After reading that this "mystery bug" may indeed by a protozoa and is found in blood smears, my practitioner may very well have identified it and treated it energetically without knowing the actual name of it. Last week, I tested negative for treating directly with blood + biophotons because my body wanted to target this no-name bug first. One week after treating the bug, I am testing positive to treat with blood.

[ 04-15-2009, 12:43 AM: Message edited by: m0joey ]
 
Posted by asus (Member # 13881) on :
 
Kelmo,

Did Dr. F comment on how they figure out if the slides actually are bart vs. whether they think its a mystery bug? Thanks

asus
 
Posted by asus (Member # 13881) on :
 
bump
 
Posted by Truthfinder (Member # 8512) on :
 
VERY interesting, joey.... [Wink] Thanks.
 
Posted by kelmo (Member # 8797) on :
 
Dr. F said he and the scientists at ASU are finding hemobartonellosis, a protozoa, and mycoplasma sticking to the red blood cells. So, it's all in there.

No toxoplasmosis.

Based on my daughter's reaction to Ivermectin, we are concluding that the last infection to deal with is a protozoa.

He will see him the first week of May, and we will discuss the next step.
 
Posted by bears1985 (Member # 17271) on :
 
Kelmo - there are not 3 organisms in the blood...only 2. BLO type organism, which is gram negative rod and a protozoan.
 
Posted by seibertneurolyme (Member # 6416) on :
 
Bears,

This is my opinion only. My guess is that some of the patients with a positive F slide have mycoplasma. Some have actual Bartonella. Some have BLO. And some have an unknown protozoa. Visually all these pathogens would look very similar. And then there are probably some patients that have some combo of 2 or 3 of the things listed.

Clongen has found at least 3 different organisms from what I understand.

I really wish the cryptolepis was available. One of the reasons I put hubby on that particular herb was that it treats both gram negative organisms and protozoa such as babesia or the unknown protozoa.

The important thing to remember is that if you have a positive F slide or a positive Clongen slide then you have an active infection. Just wish it was easier to know whether treatment should be with antibiotics or malaria/protozoa meds.

I am pretty sure hubby has mycoplasma. Mainly because of the cold agglutins which show up from time to time in his bloodwork. Also a positive response to Levaquin. I also think he has the unknown protozoa because of the issues with bloodflow to the brain, mild night sweats and seizure-like episodes. Not sure about bart or BLO. BLO seems more likely than actual Bart based on symptoms.

Bea Seibert
 
Posted by MariaA (Member # 9128) on :
 
I just bought 8 oz of cryptolepsis from Bear Creek herbs for $85 including shipping- I think that's a bit higher than Woodlandessence.com but it wasn't THAT expensive compared to my other meds.

They didn't sound like they had a shortage or even knew about it.
 
Posted by seibertneurolyme (Member # 6416) on :
 
Maria,

Hubby has talked to the owner of Bear Creek Herbs. They do have a waiting list for the cryptolepis and as soon as they use up what they have in stock they will be out until they get another shipment in - can't really predict how long that will take as they get it from a friend of a friend.

Hubby was at a very high dose -- 1 1/2 ounces per day. We have gotten a couple of the 8 ounce bottles from Bear Creek, but they are trying to spread their limited supply around among patients.

Woodland Essences is still hoping that their new shipment will be by May 1.

Bea Seibert
 
Posted by kelmo (Member # 8797) on :
 
"Kelmo - there are not 3 organisms in the blood...only 2. BLO type organism, which is gram negative rod and a protozoan."

Thanks for clarifying, I must've misunderstood what he said. It just sounded like three things.

All I wish for is that we could get this show on the road. My daughter would like to get treatment for this thing and get on with her life.
 
Posted by Hoosiers51 (Member # 15759) on :
 
I understand kelmo about wanting to get this show on the road.

I actually have just found out that I'm pregnant (definitely unplanned), so if I keep the baby, which is what I'm leaning towards, I would like to find out what my F smear was showing so that they could let me know what would prevent this from being transmitted. Before I was willing to wait longer and work on my Lyme, but now I feel like I owe it to the baby to prevent whatever I can.

I may call the lab tomorrow, or I may wait until after my regular LLMD recommends my new protocol, so I can then tell Dr. F what I'm already on, and maybe he could tweak my protocol to help with the mystery bug too.

I know on LymeMD's blog he said he thinks that the patients with the unknown protozoa are sicker than the ones without it. Since I respond Malarone and artemisinin, I am thinking that is one of the mystery bugs I have.

If it really does make people that sick (as in, it's more serious than some of the other bugs out there...if there is such a thing as a less serious infection) I would really like Dr. F's recommendations for me as a pregnant woman who is worried about trasmission.


PS--kelmo, maybe you didn't misunderstand. Maybe since some of the smears seem to look different, mycoplasma is in there somewhere, but it just isn't as great of a "mystery" since it is identified.
 
Posted by bears1985 (Member # 17271) on :
 
Kelmo - Didnt mean to come across as rude. Hope all is well and hope your family feels better soon. Dr F will find something soon.

Hiker - For your "future" reference...the lab is already "well" ahead of you. It has already been sent to the CDC. They are involved. Also...there still is a pending DNA match. Probably already found in the Vetrenarian field..somewhere in the world.

Seibertneurolyme - The only 2 organisms that have been seen are protozoans and a gram negative organism.
 
Posted by blaze (Member # 16838) on :
 
quote:
Originally posted by lymie tony z:
Aw, Come'on Blaze....

Helical Antennae!???

Yeah, Maybe...but we're not talking about antennae here...we're talkin about the whole body of the pathogen being Helixical!

Not it's antennae!

OK...?
I know I know!

zman

Zman, I guess I shouldn't tell you that I believe the hair on a person's head act as individual antenna either then, huh? I believe that's why my hair thinned out - too many EMFs from cell phone and wifi towers were entering my brain through these hairs.

I also believe this is why women are more sensitive to EMFs/RFs. They have longer hair than men do (usually). Heck, my hair is growing in wavy now - helical! - and it was always straight before this. One change I kind of like.
 
Posted by hoot (Member # 19281) on :
 
My son most likely has the mystery bug. His only symptoms are autism (neurological) and food allergies. He is not physically sick that I can tell.

Artemisiae seems to have given him more energy, though (maybe he does feel a little "under the weather"...he does not tell me. No other reaction to the full Zhang protocol other than this.

Do docs prescribe malarone for kids?

I think I might try to get my hands on some cryptolepsis first.

hoot!
 
Posted by Alv (Member # 15192) on :
 
Yes the pediatrician Dr J perscribes malarone to kids.
I recall him asking me 2 years ago if I could find it in EUROPE in case My ins did not cover it back than.

Energeticly this bug does not get killed by mepron.Have never tried energeticly to my son.Also he took it for 1 year and 1/2 started almost 2 years ago.Than MY ND would say ARTEMISIN is killing this parasites.( yes my son became like autistic within the year-SO DID I ) .

I know he had other infections before BUT THIS is WORST and made him and me worst.


All I recall my ND used to say -He has a parasite and MEPRON is not killing it artemisin yes.I did not have the drug malarone handy to test it though .But I recall that BACTRIM / Azithromacin were testing HIGHLY .

I am going to find some pills out of curiozity to test !

-BUT ARTEMISIA was number 1 all along.THAN later HH sure for bart ( seems that covers ricketsia as well).
 
Posted by kelmo (Member # 8797) on :
 
"so if I keep the baby". It would make me sad if you didn't 'keep the baby'. You are already calling it a baby, which means it's a human being.

I think this baby will be a gift to you. I feel it in my gut. You will probably also feel better since you will be having 400mg of progesterone coursing through your body.

You will be more fatigued in the beginning, but I am confident it will lift by the 5th month, if not sooner.

After the baby is born, you will have a dramatic drop in progesterone, and a surge in estrogen. At this time, you will probably get very depressed (this disease exacerbates this issue).

You should have some bio-identical progesterone cream handy at that time.

I know several women on this board who carried healthy babies to term. There is a way to treat during your pregnancy.

God Bless you.

Has anyone taken artemesia and had depression from it? I take it for one day and I get extremly fatigued and weepy.

Kelmo
 
Posted by Alv (Member # 15192) on :
 
oh yes me taking artemisia...and feeling out of this dimension when I took it in high dosages .

I have something that is really hitting me lately.

I knew that I have had RICKETSIA ..all along with bart and Ehrlichia.And we already have talked about this protozoa many times.

But I thought I was done with it.Lately I was dealing with parasitic and BABESIA that showed up but the frontal lobe presion came back.

I recall Galehane asking for it all the time.I was very highly having preasure in the frontal lobe that left and ( hurt as hell ) when I was on treatment on levaquin last year.

Since babesia came up strongly ( I knew already that I have had to deal with it ) the last 2 days my symtoms changed while I was dealing with babesia treatment ...and seems similar to what I have had last year.

I found this and again send me to RICKETSIA that might be in there .

I found today this..

http://www.ajtmh.org/cgi/content/abstract/21/6/989


But than this one is a gram negative bacteria and is

http://en.wikipedia.org/wiki/Rickettsia_prowazekii


http://en.wikipedia.org/wiki/Typhoid_fever

and as you see if any have this...that might be as AZITHROMYCIN is the best choice

They are all gram negative bacteria..

http://pathmicro.med.sc.edu/mayer/ricketsia.htm

this article below showes that is A RICKETSIA family .
http://www.kirraweevet.com.au/vetres/fh2.html


Seems that tetra family should be the one to be used.I am afraid that this is the reason some might be in need for very long term.

I know this has to do with energetic test..but once I used the rife my itchenes..that usully feels like somthing is moving as a parasite STOPED.

I tested very very high on treatment of RICKETSIA frequencies ..besides BABESIA that I already knew but I thought I was done with ricketsia since last year...

I am just throwing my thoughts out there...as SO FAR we have thought chasing this protozoa.

I also tested my daughter if she was positive on it and she did felt BIG time chills on RICKETSIA frequencies that came up high on the energetic testing.She was positive from FRY lab for the hemobartonella...BUG ..we know already that we need to clean this protozoa /babs bug as well.

AGAIN I am just sharing my thoughts.
 
Posted by galehane (Member # 15437) on :
 
[QUOTE]Originally posted by bears1985:


"Hiker - For your "future" reference...the lab is already "well" ahead of you. It has already been sent to the CDC. They are involved. Also...there still is a pending DNA match."

Bears
This is extremely good news.Unless, once more, only rumor based.Could you elaborate?
Where does this info come from?How long time ago etc ,sent to the zoonotic dept, or? Who informed the CDC? Frylabs?

Also , according to info above the scientists at ASU are finding haemobartonella, mycoplasma and a protozoa clinging to the red blood-cells.For that to be true there must have been a determination by pcr/cultivation/electron- microscopy/immuno-histo-chemical coulering.Are the scientists at ASU the ones who have reported it to the CDC?If the CDC has received the info what are they doing?Ignoring it?- working on it?

The last we heard from Dr Fry about the protozoa at the Kansas conference was that it was an organism in the vincinity of Babesia, Malaria,toxoplama,etc.Also, there seems to have been treatment attempts with drugs that are difficult to relate to those kinds of pathogenes.

To me the different info does not add up.Some people here seem to believe that the CDC would ignore- supress valid information about a new human pathogene.I dont.Again , what are facts?


Gale

[ 04-25-2009, 08:42 AM: Message edited by: galehane ]
 
Posted by Hoosiers51 (Member # 15759) on :
 
The CDC *WILL* suppress valid information until it has been replicated a many times, some time has gone by (my sarcasm), and things have been *further* proven.

Valid information is suppressed all the time. It's probably standing in line somewhere with the not-so-valid information, waiting for it's moment to bubble up to the top. That is the way the system works.

I guess it depends on your definition of suppress too. I don't believe it is done with truly malicious intent, but unfortunately there is good info out there that is sitting on a shelf. It is the nature of science run by government, which has too much to loose if it doesn't take its time.

There are very few facts right now that we on this site have the privledge of knowing. So please don't expect anything concrete or factual from this thread...that would be unrealistic. [Wink]

Does that mean I am going to stop reading this thread? No!
 
Posted by galehane (Member # 15437) on :
 
Hoosier
Not sure I understand your point correctly.But if you have the "Fry Bug problem" problem- why not try to make somebody do something.

Gale

[ 04-26-2009, 08:09 AM: Message edited by: galehane ]
 
Posted by galehane (Member # 15437) on :
 
Bears

Had hoped that you could help with elaborating on your info about the CDC etc...
Considering the earlier heaps of rumors I fear that this is just another to the pile?

Gale
 
Posted by Alv (Member # 15192) on :
 
Ironicly galehane MY LLMD still ignores it and I was disapointed last apointment .

I will have a conversation with DR J to see what he thinks of the treatment.

If the bug is in the BLOOD (imagine if that is in the tissue and there is not test for it ) -should be treated as long as the person is non symtom free.

Reducing the pathogens at least for the ones that we know and have proof on ,will reduce and eradicate one more infeciton from the body and if any other unknown is left..the body will be able to deal much better with one less.
 
Posted by galehane (Member # 15437) on :
 
alv
Dont get it.
Your LLMd has ordered the test- gets a postive result and ignores it?For what reasons?Why did he order it?
Most test-results from Fry are postive with the "funny bug".(Unfortunately the technique does not allow other more serious findings).
In my book that is not a serious doctor.

No doc anywhere will be able to give you a qualified idea of how to treat this bug without a precise idenfication.Again , that is why the only thing that makes sense is to have some qualified research lab look into the problem.

Gale
 
Posted by Hoosiers51 (Member # 15759) on :
 
My opinion is that a lot of doctors use the Fry bug to build a case for a patient that has a lot of infectious things going on.

Even those of us that have tested CDC positive for Lyme....I'm sure there is the question of, okay, but what is your primary problem right now...sure you're not just depressed? (IDSA mentality)

This builds a case that there is indeed at least one infectious agent seen in real time. This suggests that yes, antimicrobals perhaps ARE appropriate to fight this fatigue/pain/etc.

(well, once there is a proven correlation between this bug(s) and symptoms, that will improve the case for the meds)


Sorry if what I said in that previous post didn't make sense. It really doesn't, I think i was rambling. My point was that there IS information out there, we are just not made privvy to it yet.
 
Posted by Alv (Member # 15192) on :
 
Yes it seems like my llmd wanted to build a case.

My daughter had LYME CDC negative , very low CD ( confirmed ) through energetic testing from my llmd that she has lyme and bart.Than requested FRY ( I wanted her to get it done due to CDC negative igenex) her band 41 was the highest and only.


As my daughter got treatment and put her bart in remission and lyme...her symtoms show as babs right now.I am sure the FRY bug that is a protozoa is acting out.But my llmd decided to answer this way this time THAT IS QUESTIONING my llmd position right now!

I wanted to have an opinion from another DOCTOR about it.It seems that FRY lab will talk only to the LLMD for the treatment type not to patients...

RIGHT now I am on freezing moment with my llmd .I need to find an answer before I aproach my llmd next time.I do not want to fight either ...something is definitly going on..maybe backing off...from being an llmd...is the 3 rd one that is doing that the last 3 years.

others have done so DUE TO POLITICS against treatments..but what concerns me is the fact that the TEST exist and is POSITIVE!!!!

This is totaly diferent from bart henselae that my daughter had positive from a diferent test.My daughters bartonella is reducing tremendously ..and I KNOW THIS BUG is acting up right now.
 
Posted by galehane (Member # 15437) on :
 
alv and hoosier

You may be right bout the motives of some docs in ordering the tests.
To me that is completely beside the point.

It seems that there is a very serious infection that makes a lot of people very sick.
Either it has been reported to the CDC in which case there is a hope tat an ID will be made and people can get better. Or it hasnt.If so, it is incomprehensible and irresponsible.

Gale
 
Posted by Cold Feet (Member # 9882) on :
 
I was wondering if there is a brave, energetic soul out there willing to summarize this topic, and/or the latest on the BLO...
 
Posted by Cold Feet (Member # 9882) on :
 
As a footnote, one of the reasons I asked this question is that I continue to get mixed messages on what may possibly "feed" the BLO and bartonella; some articles have differentiated between "feeding" cultures of the bugs (one must look hard); e.g. see below. This stuff is tough to figure out (duhhh....)

My tentative assumption is that arginine feeds certain BLO bugs; but actually may "hurt" others.
____________________________________

: Proc Natl Acad Sci U S A. 2008 Jul 8;105(27):9427-32. Epub 2008 Jun 30.

Detrimental effects of Bartonella henselae are counteracted by L-arginine and nitric oxide in human endothelial progenitor cells.

Salvatore P, Casamassimi A, Sommese L, Fiorito C, Ciccodicola A, Rossiello R, Avallone B, Grimaldi V, Costa V, Rienzo M, Colicchio R, Williams-Ignarro S, Pagliarulo C, Prudente ME, Abbondanza C, Lamberti F, Baroni A, Buommino E, Farzati B, Tufano MA, Ignarro LJ, Napoli C.
Department of Cellular and Molecular Biology and Pathology Luigi Califano, School of Biotechnological Sciences, Federico II University of Naples, Naples 80131, Italy.

The recruitment of circulating endothelial progenitor cells (EPCs) might have a beneficial effect on the clinical course of several diseases. Endothelial damage and detachment of endothelial cells are known to occur in infection, tissue ischemia, and sepsis.

These detrimental effects in EPCs are unknown. Here we elucidated whether human EPCs internalize Bartonella henselae constituting a circulating niche of the pathogen. B. henselae invades EPCs as shown by gentamicin protection assays and transmission electron microscopy (TEM). Dil-Ac-LDL/lectin double immunostaining and fluorescence-activated cell sorting (FACS) analysis of EPCs revealed EPC bioactivity after infection with B. henselae. Nitric oxide (NO) and its precursor l-arginine (l-arg) exert a plethora of beneficial effects on vascular function and modulation of immune response.

Therefore, we tested also the hypothesis that l-arg (1-30 mM) would affect the infection of B. henselae or tumor necrosis factor (TNF) in EPCs. Our data provide evidence that l-arg counteracts detrimental effects induced by TNF or Bartonella infections via NO (confirmed by DETA-NO and L-NMMA experiments) and by modulation of p38 kinase phosphorylation.

Microarray analysis indicated several genes involved in immune response were differentially expressed in Bartonella-infected EPCs, whereas these genes returned in steady state when cells were exposed to sustained doses of l-arg. This mechanism may have broad therapeutic applications in tissue ischemia, angiogenesis, immune response, and sepsis.

PMID: 18595894 [PubMed - indexed for MEDLINE]
 
Posted by kelmo (Member # 8797) on :
 
Daughter starting treatment for toxoplasmosis this weekend. Will let you know.
 
Posted by galehane (Member # 15437) on :
 
Is it possible to post something about the diagnostics (was here a pcr test)?-would be really helpful.
Gale

[ 06-17-2009, 05:29 AM: Message edited by: galehane ]
 
Posted by kelmo (Member # 8797) on :
 
He took blood for the pcr but said there may not be much showing since she is in active treatment.

He is going clinical based on the stubborn band 41, her symptoms, reaction to drugs like Ivermectin, etc.

After three plus years, he asked if we were willing to try it. My daughter said yes, no hesitation.

We have a cat, it was a stray when we found him. We never owned a cat before him. He is now 14. I believe that toxoplasmosis was just opportunistic with all the other organisms.

But, we are testing for it, just the same.

Gale...he's doing a presentation on the 23rd to a Lyme Autism conference. He will be presenting loads and loads of facts and pictures.

He will be presenting it in the way a scientist would. "Here's the facts, research, and results" Then they can come to their own conclusions.

He is not there to support the work of the other speakers, but only to present his findings. Especially the two cases of autism he has been treating and the dramatic results he's had.

I cannot attend even though it is local. But, I believe that Scott Forsgren will be attending. I hope he gives a report on what is presented.
 
Posted by galehane (Member # 15437) on :
 
Kelmo
thanks- hope forsgren can post something.
Hope you have a chance with the pcr anyway, as the meds dont seem to be that effective? But again it might not always be in the blood?
But positive to know that there is a pcr- athough I presume it is not that specific yet? (has pinpoined the bug exactly??), but obviously something similar??
I suppose it is Toxo proper as many pts are sero-negative for "oldfashioned Toxo"??

Gale
 
Posted by springshowers (Member # 19863) on :
 
The Day that Dr. F does his presentation is a proffessional day only. The other days open for public registration. Not sure if there are any exceptions.?
 
Posted by springshowers (Member # 19863) on :
 
Here is the schedule for anyone interested in going. I may be going to some of the events.

LIA Conference Arizona 6-25-09 through 6-28-09
 
Posted by seibertneurolyme (Member # 6416) on :
 
Gale,

Hubby spoke to the F lab again this morning regarding his recent bloodslide. His doc has the results which we do not know yet. Our LLMD appointment is not until July 1.

Anyway, I think Kelmo is saying that her daughter is having a PCR test from F lab for toxoplasmosis. According to the lab the only tests available to the public which are not listed on the current website/order form are:

PCR test for 3 babesia species (microti, gibsoni, and canis). A positive test would be sent out to another lab to confirm the actual species by 16S DNA sequencing.

And PCR test for toxoplasmosis.

According to the lab the toxo test may show a positive which could be a cross-reaction with the new protozoa.

Bea Seibert
 
Posted by Amy C (Member # 19297) on :
 
Ok I didn't get to read all these replies yet but have a question!

Both my boys got the Fry lab test results of "hemobartonella/mycoplasma" which I assume you are saying could be "Toxoplasmosis"?

Well then they both tested at Lab Corp highly positive for active Mycoplasma. Sooo my question is could their Fry Lab really be showing Mycoplasma and not this Toxoplasmosis?

Any thoughts??
Thanks!
 
Posted by galehane (Member # 15437) on :
 
Seibert

thank you for the info.
I think i understand.

Just for clarification.i was under the impression that the pts with Dr F could have a spcial PCR.If I understand correctly that it is a pcr for Toxo that might be cross-reactive to our x-bug?Thank you.
BTW
How is Hubby doing on the meds?
Gale
 
Posted by kelmo (Member # 8797) on :
 
The issue is money. He has two organisms he needs mapped. He has two microbiologists working with him. As my daughter was getting her blood drawn, I saw one of the men comparing slide images on two different computer monitors.

I didn't feel I could go in and look over his shoulder.

He was thrilled that they actually saw a spirochete, but it wasn't borrelia, it was leptospira. That might show that we are carrying things in our bodies we hadn't thought of.

He is using the heck out of his PCR, Gale.

Look, I don't know if my daughter will benefit from this new treatment. But, we are willing to try it so the rest of you can benefit.
 
Posted by seibertneurolyme (Member # 6416) on :
 
Amy,

First rule of treatment is to treat what you know. You have a confirming test that your sons have mycoplasma. Treat that and then if issues remain be open minded to other possible infections.

The F lab is investigating 2 organisms --

1) a mystery blood protozoa -- said to have some genetic sequences of toxoplasmosis and some genetic sequences of malaria -- First line of treatment would be babesia meds or toxoplasmosis meds

2) a gram negative bacteria -- get the impression that this is much more common than the protozoa -- may be a strain of bart or BLO or mycoplasma or other unknown proteobacteria -- first line of treatment would be bart meds (generally the same meds used for mycoplasma also) --

but many (including hubby) who have previously treated for bart still have this bacteria -- no one knows the optimum treatment -- hubby's LLMD says that many of his patients do recover or go into remission but even in those patients this bacteria still continues to show in their slides but at reduced levels.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert
 
Posted by galehane (Member # 15437) on :
 
Bea and Kelmo
Thanks for the info.
Guess we have have no more chances of establihing exactly what it is ,and to me it is clear (as I have written before) that it is such a shame a resourceful lab has not been involved.Sequencing the organims would have been a matter of weeks not months and years.So I shall stop asking questions that nobody can answer yet.
All the best with the treatment attempts.

Gale
 
Posted by bigdreams87 (Member # 20493) on :
 
I have this bug in the ring form. I've sent it off to Dr. K at Clongen to see what he thinks. My infectious disease Dr. thinks it is artifact. I am also a patient of Dr. F's. He had me on azithromycin and said it was ok for me to try Zhang's artemisiae. At the same time I started some meds for gastritis and had a bad reaction. I cannot take the PPI, or H2 blockers, I don't know why, it just gives my body this crushing feeling that's just not normal. I stopped all meds at this point. Since then I have started up on azithromycin and alinia and am finally able to eat again (although still losing weight) - and I have a bit more energy after 1 week.

My question is do any of you who have this experience weakness to where you can't walk 100 feet without feeling like you are about to have a heart attack and die? Some days I can't even just "stand," it is so taxing on my body. Is this the bug in the nerves, or ? I also think my body is eliminating protein so I wonder if my kidneys are involved.

I see some have tried alinia, in fact many have tried these medicines with no avail, so it's kind of discouraging. It's also hard because I want to know if all my problems are coming form this ONE bug. I would assume so. It seems that Dr's don't know anything about anything.

I would pay $100,000 for a cure at this point. What do we need to do to speed up the process?
 
Posted by timaca (Member # 6911) on :
 
If you have gastritis, have you been checked for enterovirus? See: www.enterovirusfoundation.org for more info.

Best, Timaca
 
Posted by springshowers (Member # 19863) on :
 
Big Dreams
How do you know you have the ring forms?
What test was done to give you that information?
 
Posted by bigdreams87 (Member # 20493) on :
 
I had the blood smear.
 
Posted by springshowers (Member # 19863) on :
 
Have they determined that the blood "smear" is showing the protozoan?

I had thought that the blood smear only showed the bacteria just like always. And that the protozoan was seen on another test.
 
Posted by TO LIFE (Member # 12371) on :
 
Hi,

I ditto what springs has mentioned
 
Posted by TO LIFE (Member # 12371) on :
 
Isn't an protozoan a parasite.
 
Posted by springshowers (Member # 19863) on :
 
TL
Yes Protozoan is a name for the actual bug that causes the parasitic disease such as there examples:

Babesiosis is a malaria-like parasitic disease caused by Babesia, a genus of protozoal piroplasms.

Toxoplasmosis is a parasitic disease caused by the protozoan Toxoplasma gondii.[

Malaria is a vector-borne infectious disease caused by protozoan parasites of the genus Plasmodium.
 
Posted by UnexpectedIlls (Member # 15144) on :
 
so HOW do we treat this?? With Artemesia? Mepron? something antiprotazoal??
 
Posted by springshowers (Member # 19863) on :
 
That is the million dollar question!!
 
Posted by galehane (Member # 15437) on :
 
Personally i have had enough of this speculation which can go on for more years and years,and is meaningless for us amateurs(So I promise I shall probably stop posting here)
Obviously Frylabs works hard to make an ID and has done so for years
But any lab/doctor that finds patogenes that affect the health of very many people should contact the proper institutions (state labs etc)
If there is substance to the hypothesis of a new kind a toxoplasmoses I am not so paranoid that I believe they would not be very interested.Or??
The fact that some LLMDs dont want to might be because they fear to get into the limelight-What a shame.

Gale
 
Posted by springshowers (Member # 19863) on :
 
I know you keep posting here that you do not want to participate any more.

Maybe in the coming up year there will be some more information but waiting month by month I agree with you that you may just find yourself more frustrated than ever.

I am sure you will be watching and will notice what is going on .

Why have you not called them yourself and ask these questions to the doctor or lab itself and find out that way. I know he talks to a varied and wide variety of people.

The questions you ask and want answers to have not and most likely will not come out through the patients and if it does it is tidbits of information and it has shown that that information is sometimes interpreted or understood totally differently than it is or differently from person to person.

Patients are not scientists and even though some are more well versed or educated you will not get far trying to pick through what is said if you looking for detailed scientific explanations.

Not only that there is always A Why or another question that comes from the answer that you might get.

Again.. as you seem so frustrated .... so have I been watching the same old questions posted here instead of trying to go to the source.

Take care
 
Posted by galehane (Member # 15437) on :
 
Springshowers
Just to make it clear
Of course I have contacted them numerous times.And done the things as a patient that I have suggested to others.
Edited:
Within infection medecine the detection of and reserach in human pathogens nowadays is almost exclusively made in government funded institutions.That is so all over the world.
Gale

[ 06-21-2009, 01:22 PM: Message edited by: galehane ]
 
Posted by kelmo (Member # 8797) on :
 
I'm with ya, Spring. It gets old.

Gale, maybe there is someone in Europe who is working on this that you could "encourage" to do more. Maybe things work differently there.

If you are doing research for medical science in the USA, you are either sponsored by the government or a pharmaceutical company. In those instances, you have an obligation to do it the way the people with the $$ tell you to do.

As Dr. F is independent, the money has been coming from the profits of his practice. There have been no donations until recently when he was approved to accept outside donations.

There is timing, resources, research, and concrete evidence that all must come together before you risk it all and go public. He has been making presentations before peers. But, as a lab guy, this is not his favorite thing to do.

This is how free enterprise works. Henry Ford, Thomas Edison all used their own money to create the marvelous inventions we enjoy today. The only time government had a hand in invention was by accident in preparing to go to the moon. (Velcro, microchip computers, satellite transmission)

You keep saying this needs to get into government hands. That's not always the best way. Government could actually be a hinderance.
Government is already a hinderance when it comes to the Lyme treatment we have now. So, why go there?

There isn't anyone in your region where the government is working to help people who are chronically ill?

I'm sure this is frustrating for you. It's frustrating for me, too. It's MOST frustrating for my daughter, who's life has been pain and pills for the last decade.

But, it's hope that keeps us getting up day by day.


Kelmo
 
Posted by feelfit (Member # 12770) on :
 
Amen Kelmo. Well put. With that explanation, perhaps the complaining will stop.

Feelfit
 
Posted by springshowers (Member # 19863) on :
 
Well put Kelmo Ditto

Everyone who knows things trys to share and it is never good enough. So I hope that people appreciate what is shared and learn from what is said.

We all want more. Believe me. I know as well as anyone.

BUT> I am glad for a man who is trying hard to find answers. I do not know anyone else like him.

I so admire and appreciate his efforts and his passion on trying to help suffering people.

I think we should turn our attention toward that. I

There are so many others in the field that can do this without him asking them to. Why arent they? There is enough information out there for anyone to grab ahold of and do something.

To keep posting how it is a shame and point fingers like the doctor is the one who has halted progress by not asking for others to get involved is ridiculous.

Its a free world. I think you should ask the rest of the people why they are not getting involved and trying to figure this out.

Maybe they do not care to.
 
Posted by bigdreams87 (Member # 20493) on :
 
bump
 
Posted by MarsyNY (Member # 7766) on :
 
Casey,

Just wondering if you're around could report back on your progess, Thanks, Mar
 
Posted by R62 (Member # 18531) on :
 
Any updates on this?

Thanks
 
Posted by galehane (Member # 15437) on :
 
R62
You might want to read the (critical) thread about this subject on LNE.

Gale
 
Posted by kelmo (Member # 8797) on :
 
I have the DNA slide of my daughter's most recent blood test. Biofilm community is very clear. Don't know how to post it to this site. I have it in my profile on Lymefriends.
 
Posted by R62 (Member # 18531) on :
 
Is this a Fry smear? or clongen?

Thanks, Gale.
 
Posted by R62 (Member # 18531) on :
 
Several searches and no critical thread showing up...
 
Posted by MarsyNY (Member # 7766) on :
 
R62,

Is this the critical thread?

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/67269
 
Posted by kelmo (Member # 8797) on :
 
It's a Fry lab test. I have it posted at Lymefriends, can't get it posted here, that I can tell.
 
Posted by springshowers (Member # 19863) on :
 
I am not sure how you can post a photo here either that is not already on a website that is viewable. I know Lymefriends needs passwords and registration to view.

Beyond that Have you seen this?

http://www.publichealthalert.org/Articles/tinagarcia/new%20treatment%20dramatic%20results.htm

And also did you know Dr. Fry is speaking at the Arizona Lyme Support Group. It was scheduled in July and then moved to September.

Anyone know about this Lyme Disease Support Group in Arizona and how it is? Is it something that anyone in Arizona has gone to? If so. Recommended?

Thanks Much.

I heard you can post photos up on something called Photo Bucket?

http://photobucket.com/

Its free and I have seen others post their photos that way and then just provide the link.

An idea.

Thanks much
 
Posted by galehane (Member # 15437) on :
 
R62

It is on Lymeneteurope.org.

Gale
 


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