Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Okay, Metallic, now I get what you're saying...thanks. 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.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
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).
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.
I may ask his doc to layer in some Bactrim at some point (and remove GSE).
Jen
Posts: 236 | From Illinois | Registered: Feb 2009
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Truthfinder
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posted
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?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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METALLlC BLUE
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posted
I think you're all asking good questions. Everytime we get new data, more questions arise.
One key issue is whether deep tissue penetration vs. treating the blood borne variety. This infection may not reside in the blood alone and may be difficult to deal with from an intracellular point.
Other people have brought this up to me, it's not something I considered.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Also, there have been a number of members here who were very insistent that parasites are critical to resolving some chronic problems that Lyme Disease patients have. I never investigated this -- to be honest. I was only aware of Babesia.
Other members who are more invested in protazoa based infectious diseases may have strong input to add. If anyone knows anyone that follows that, point them to this thread.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
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..
Posts: 593 | From long island ny | Registered: Apr 2006
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Hoosiers51
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posted
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:
posted
Yes, Doxy also makes me herx like crazy. Perhaps it is an altered form of Mycoplasma?
Posts: 770 | From USA | Registered: Jul 2006
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posted
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;
posted
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.
kelmo
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Member # 8797
posted
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.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
WOW, of water variety.....did I just read that....I know i did.
Kelmo- I was also sickened probably within a few hours of swimming in a lake in 2005. I was the only one in my family that swam in the lake that day.
Do you think the infection would hit me that quickly after being in the lake?
edited to add....I was in the lake a few weeks prior too and came down with what the dr thought was bronchitis coming back again...
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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CD57
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posted
Kelmo, great! Your story and your daughter's symptoms seems similar to this recent entry, from LymeMD's blog! Did Dr F say anything about using malarone? Here the LymeMD is conjecturing that his patient never had babesia but had something that went away with malarone! ----------------------------------------- Fibromyalgia remission with Malarone
I have been treating a 46 year old woman with chronic Lyme syndrome for about 18 months. She resides in Montgomery County Maryland and her favorite hobby is(was) gardening. Her presenting complaints were muscle pain, muscle weakness, fatigue, joint pain, neck pain, headaches- with an exacerbation of pre-existing migraines, night sweats, brain fog with forgetfulness- word recall difficulties- short term memory loss- slow cognitive processing and severe depression.
She in fact had no idea that she might be suffering with chronic Lyme disease when I suggested the diagnosis. She had been a regular patient for several years treated only for migraine headaches. She had not shared her other symptoms with me because she was worried that I would think she was a hypochondriac.
The muscle pain it turns out, was a prominent symptom. She had incapacitating pains in her muscles, especially around her neck and upper back area. Her muscles were knotted and stringy and exquisitely tender. She saw a pain management specialist who diagnosed "fibromyalgia," and treated her with trigger point injections as well as a mix of pain meds.
This occurred during the 6 months prior to the Lyme diagnosis. Looking back, it is now clear that she had suffered with fibromyalgia for 20 years. She did not share her symptoms with others in her life. She blamed herself. Somehow, she believed her symptoms represented a personal failing- as she struggled to keep up with other well functioning people around her. Only by sheer will and determination was she able to create the illusion that she was well, when in fact she was getting sicker and sicker.
Finally, almost inadvertently, she shared her story with me.
Her exam had classic Lyme neurological abnormalities. Her labs were fairly unremarkable. Her IgeneX WB for Lyme showed only a positive IgM 31 band with several other IND bands. She wanted a positive test to be convinced she really had Lyme disease. I explained that the 31 band was highly specific. It took some coaxing, but she agreed to start treatment for Lyme.
She took Amoxil and Biaxin for about one year. She was nervous about changing medications so we kept to this one regimen. Most of her symptoms improved. Overall, she was 60% better. Persisting symptoms included sweats- which thought were due to menopause AND there had been no change in the fibromyalgia piece of her syndrome. I convinced her to try Mepron, believing that she had sero-negative Babesia. Her insurance turned down Mepron so I substituted Malarone, perhaps fortuitously. Follow up labs continued to be seronegative for Lyme disease by IgeneX standards and Babesia. I also ordered a blood wet mount performed at Clongen. Extracellular motile organisms were present.
After 3 months on Malarone she noted that the muscle pain was almost completely gone. After five months on Malarone all signs and symptoms of fibromyalgia were 100% gone. Her knotty,lumpy muscles were replaced with smooth, normal tissues. This is one very happy patient! Her "menopausal" sweats were also gone.
This is conjecture: She never had Babesia. The motile parasites seen in blood wet mounts may have been responsible for her muscle disorder. We known that these parasites do not live in blood or blood cells- they are extracellular. This means they primarily reside in other tissues. Their numbers must be so numerous that they egress into the blood. A likely place for parasites to live is muscle tissue. One must wonder: could fibromyalgia be caused by muscle parasites, at least in some patients?
This case shows remission of longstanding fibromyalgia with Malarone- used in conjucntion with Biaxin and Amoxicillin. Posted by Lyme report: Montgomery County, MD at 5:26 PM 0
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Hoosiers51
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posted
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. Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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posted
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....
Posts: 4590 | From Midwest | Registered: Jun 2008
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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
Posts: 268 | From europe | Registered: May 2008
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bettyg
Unregistered
posted
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.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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!
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
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METALLlC BLUE
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Member # 6628
posted
Groovy2 mentioned in another thread that a lot of progress is being made using "Primaquine" -- now look up at the list I provided in bold. Notice Primaquine listed?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Not sure if this was brought up in this thread somewhere or not as I cannot read it all as I am a little sick at present....
However....
There is another bacteria that is cross referenced with Bb.
It is what gives everyone heartburn or ulcers and is located in the gut...
This bug is H-Pylori which is effectivelty irradicated by a combination of Bactrim and Metronidazole,
with an ant-acid, I belive to be, a tablet form of pepto-bismol.
It might be noted that while Bb has been known to "ride on the backs",
of parasites in our bodies, or one of our bugs(or many)have bugs themselves.
This was the reasoning behind initial importance of ridding the body of babesia first,
even though the patient may not have tested positive for this common co-infection.
H-Pylori may be a carrier of other bacteria which leads to the cross referrence in blood tests.
Personally, I irradicated this bug(helixical in shape as well as spirochetes,
way back before I even knew I had Bb, yet I consistently test positive for H-Pylori.
I'm confident that I erradicated H-pylori with the 14 day antibiotic regimen years before my
discovery of Bb because I no longer have to take heartburn medicine/antacids like malox or
tagamet/prilosec, of any kind because I no longer have heartburn/regurge.
Prior to the 14 day regimen I needed some form of antacid constantly, even if all I ingested was water!
I feel there is some as yet undiscovered link with H-Pylori and Bb. There just has to be.
It would be nice if H-Pylori was a "natural enemy", of Bb,
or any one of the co-infections that come along with the TBI's we all suffer from.
My only clue is that, prior to my decline in health.
I was definitely infected with Bb, but perhaps the H-pylori and my own immune system were
battleing the TBD's adequately and when I irradicated the H-Pylori from my system...
a possible "KEY" factor was removed from my own personal equasion!
Thus, leading to exacerbation of TBD symptoms and or further dissemination.
Of course the misdiagnosis and subsequent prescriptions for anti-inflams steroidal and non-steroidal anti-inflams or NSAIDS,
also lowered my immune system aiding and abedding any TBD I was infected with or any
co-infection as well.
I hope this is a link to something that will aid us in irradicating all of out TBD's and I
think should be investigated and studied further. Of course testing for any of these diseases has got to become more precise and decisive then just
"experimental in nature",
and not proving anything one way or another. This is why funding is paramount for the
scientific detectives to uncover the "mystery illnesses"
that plague us all! For even the western blot for Bb is still experimental!
IMHO zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
[QUOTE]Originally posted by aiden424: [QB] Dr. F says this protozoa is primarily a water variety.
Well unless it was in my drinking water there is no way I was any where near water in April when I got sick. We still get snow here in April. So I may not have it.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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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?
Posts: 710 | From West Coast | Registered: May 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
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
Posts: 3975 | From usa | Registered: Aug 2007
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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.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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bettyg
Unregistered
posted
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 lol
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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 ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Dear God! That's astounding!
Posts: 2903 | From AZ | Registered: Feb 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Oh my goodness! So not necessarily from a tick bite? what on earth are we going to do with it?
Posts: 3528 | From US | Registered: Apr 2007
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posted
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
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10175 | From Illinois | Registered: Aug 2004
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posted
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.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Someone else asked me to post this information to help you all further.
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
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.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
If this is found to be the cause of our problems do we get our money back from the LLMDs?
Posts: 789 | From CT, | Registered: Jun 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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)
Posts: 4590 | From Midwest | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Al, yeah, right after the IDSA admits their treatment has been wrong and sends us all checks. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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)
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I'm going to Europe with my LLMD rebate check. Right after picking up my Lamborghini.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
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.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
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.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
so many interesting comments; best wishes bea where you are right now.
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
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.
Posts: 2903 | From AZ | Registered: Feb 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
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.
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
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."
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
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?
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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adamm
Unregistered
posted
YEah--the fact that F says that this is water-borne is particularly suggestive of it being opportunistic.
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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