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» LymeNet Flash » Questions and Discussion » Medical Questions » Hot off of the Press Mystery Bug revealed and Treatment plan (Page 3)

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Author Topic: Hot off of the Press Mystery Bug revealed and Treatment plan
feelfit
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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

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hoot
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I was looking at the requisition form today. It is $295 for the smear.
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Hoosiers51
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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.

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Hoosiers51
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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.

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hoot
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Do you have any idea about how long it will be before this enhansed testing is available?

Jen

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Hoosiers51
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Jen,

I don't know. I'm not a patient of theirs, so I'm not really in the loop.

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TadichGrill
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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?

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tmmort
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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!

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Hoosiers51
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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]

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louisep
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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

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Mo
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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

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Alv
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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.

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kelmo
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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.

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Tumble weed
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Ivermectin is cheap at a farm store it is sold as a wormer
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m0joey
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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

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kelmo
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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.

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asus
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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...
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kelmo
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Good question, I'll ask him.
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asus
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Thanks Kelmo!
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nellypointis
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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

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sizzled
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Is this the same thing as EPM in equines?

Equine Protozoal Myelitis?

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joysie
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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]
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Alv
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No Joysie you are not nuts..read below..

http://www.personalconsult.com/articles/babesia2007update.html

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galehane
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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 ]

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lymie tony z
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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 ]

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

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lymie tony z
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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

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

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seibertneurolyme
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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

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eagle
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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?

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hiker53
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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

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Hiker53

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darkness." 1John 1:5

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hoot
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The bugs that have a specific name probably are for the patients that have antibodies in the blood.

hoot

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lou
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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.

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Hoosiers51
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....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.
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lymie tony z
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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

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

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hiker53
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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.

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Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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m0joey
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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 ]

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asus
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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

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asus
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bump
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Truthfinder
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VERY interesting, joey.... [Wink] Thanks.

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

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kelmo
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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.

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bears1985
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Kelmo - there are not 3 organisms in the blood...only 2. BLO type organism, which is gram negative rod and a protozoan.
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seibertneurolyme
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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

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MariaA
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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.

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seibertneurolyme
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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

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kelmo
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"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.

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Hoosiers51
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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.

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bears1985
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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.

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blaze
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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.

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hoot
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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!

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Alv
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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).

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kelmo
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"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

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Alv
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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.

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galehane
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[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 ]

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Hoosiers51
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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!

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galehane
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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 ]

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galehane
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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

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Alv
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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.

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galehane
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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

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Hoosiers51
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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.

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Alv
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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.

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galehane
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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

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Cold Feet
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I was wondering if there is a brave, energetic soul out there willing to summarize this topic, and/or the latest on the BLO...

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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Cold Feet
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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]

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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kelmo
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Daughter starting treatment for toxoplasmosis this weekend. Will let you know.
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galehane
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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 ]

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kelmo
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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.

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galehane
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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

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springshowers
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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.?
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springshowers
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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

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seibertneurolyme
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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

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Amy C
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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!

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

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galehane
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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

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kelmo
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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.

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seibertneurolyme
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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

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galehane
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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

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bigdreams87
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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?

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