Nanobacteria

June 28, 2002

My gut feeling when a company offers both a test to detect AND a

treatment is $$$$$$.

So I went to MedLine..

and found only 2 articles on " nanobacterium sanguineum " which

describes them as causing " biomineralization of the culture medium "

and thus implicated in human kidney stones. And only one more on

nanobacterium that describes their pathology as being unknown....

Before testing for a bacteria that has no known association with any

illness except kidney stones, I would first get tested (conventional

and PCR - both) for all of the USUAL SUSPECTS... and make sure that

you are totally clean of them... they are (IMHO):

* Helicobacter pylori

* Chlamydia

* Mycoplasma

* Epstein-Bar Virus

* Varicella zoster virus (chicken pox)

* Q Fever (iella burnetii)

* Lyme Disease

* Mediterranean spotted fever (Rickettsia)

* Mycoplasma

* Legionnaire's Disease

* Cytomegalovirus (Herpes

* Candida

See http://www.lassesen.com/cfids/infections.htm

NOTE: Any one of the above can cause Syndrome (coagulation

disorder) which could account for the Chronic Fatigue and other

problems (The #1 presentation of Syndrome according to Dr.

, is Memory problems)...

OR http://www.immunesupport.com/library/showarticle.cfm?ID=218

> discovered nanobacterium sanguinem from NanoBacLabs?

>

> http://www.nanobaclabs.com/PageDisplay.asp?p1=6578

>

> Their web page implicates nanobacteria in FM - but does not mention

> CFS/ME.

>

> Any USA CFS/ME/FM patients willing to take the test and report back

> to the group?

>

> Jed Gallagher

> England

June 28, 2002

How?? How does one get tested for all the entities you talked about??

where?? How do you get a doctor to cooperate? How do you afford it??

My doc can't even test for live EB virus right now...he can't get the test

approved costwise...how??

Lets face it, most of us don't have the " usual suspects " tested for at all,

the most many of us have had is " titres " which doesn't tell all that much

except that maybe we were infected. My cytomegalovirus titres showed a very

high number and the conclusion is that I had a very bad case of it or have a

chronic form of it..but no followup by any doctor.

All this and I have chronic Zoster to boot!

June 28, 2002

Excellent point ... my main point is IF you want to do testing, test

for likely candidates!

Your issue -- practical patient/clinical management aspects. I would

say the first stage is getting " buy-in " of the MD to a model. Our MD

has been educated into Syndrome and is now comfortable with it

and thus is comfortable with testing for the usual agents. MANY of

her patients are on medicare (or worst) -- our MD is a family

practise MD in a rural environment (20 min to the closest city of

6000 people)... so she makes 'pragmatic decisions' when it is needed.

Some tests, like H. Pylori are relatively simple, cheap and familar

to many general practise MDs. If you are positive, it is a short

course of antibiotics (currently THREE in combination) ... and if you

herx badly... it is a prognestic for having Syndrome (since

all of the Infections appear to have herx reaction!!!).

Our entire family started on long term antibiotics (following Jadin's

protocol -- which targets almost all of the possible infections, see

http://www.lassesen.com/cfids/antibiotics.htm )with the " testing for

infection being a herxheimer effect " - per Jadin's observations.

We were not tested for any specific infection then... This happened

later and found for Laurie only EBV (and candida which is easy to

deduce often) and for our 13 yr old (who had shorter term antibiotics

because of her age: Mycoplasma and Chlaymedia infections that had

survived 6+ months of antibiotics...)

-- the reality is that educating MDs is slow and difficult... we were

fortunate in that we converted our previous family MD into an MD is

becoming more and more CFIDS centric...

----------------------------------------------------

OK... to the practical:

If there is 'difficulty' with your MD, you could go down the non-

prescription path... but you must be prepared for herxheimer

reactions that can last for months.... the items that I would suggest

are:

--- ANTI-INFECTION---

1) Olive Leaf Extract (Protease Inhibitors)

2) Non-denatured Whey

3) Transfer Factor (start with generic, 4Life -- cheapest) and

then go on to 540/560 once the herxing has stopped for a while)

--- Anti-coagulant ----

4) Grape Seed Extract (possibly with 10 days of aspirin with

meals to start)

5) Tumeric (kitchen splice) - we usually make them into

capsules..

6) Niacin (regular flushing)

NOTE: ISAC panels are good-- but the above are generally harmless if

taken at recommended dosages...

--- Anti-fibrin ----

(Fibrin is where infection may be encased -- thus the fibrin needed

to be removed to allow the infection to be eliminated)

7) Bromelain

8) Serrapetase

9) Lumbrokinase

WARNING: All of these may cause the herx to worsen..

For more information (i.e. links to medline on each of these) see

http://www.lassesen.com/cfids/supplements.htm

> How?? How does one get tested for all the entities you talked

about??

> where?? How do you get a doctor to cooperate? How do you afford it??

> My doc can't even test for live EB virus right now...he can't get

the test

> approved costwise...how??

> Lets face it, most of us don't have the " usual suspects " tested for

at all,

> the most many of us have had is " titres " which doesn't tell all

that much

> except that maybe we were infected. My cytomegalovirus titres

showed a very

> high number and the conclusion is that I had a very bad case of it

or have a

> chronic form of it..but no followup by any doctor.

> All this and I have chronic Zoster to boot!

>

June 28, 2002

I don't have H Pylori. This has been tested with numerous biopsys via

endoscopy. ly I didn't like being called a liar by the MD who was doing

them who insisted I was taking NSAIDS at the time. (I hadn't taken any

NSAIDS for nearly two years prior to the ulcer which was caused by

mechanical abrasion during an ERCP) She insisted the reason it did not heal

was that I was taking NSAIDS. She said that was the ONLY reason ulcers that

are non H.Pylori do not heal. I think, she has a lot to learn about what she

doesn't yet know!

I'm very tired of trying to educate physicians. I'm just getting plain tired

of fighting. ly, right now, my doctors are my biggest stress..even

moreso than the disease.

June 29, 2002

Unfortunately it takes money to get better. It sucks, but there is no way

around that. In your case since you have viruses, why don't you just focus

on treating them? Transfer factor seems to be the best, and the cost has

come way down.

Doris

June 29, 2002

Doris..who has gotten better with t factor? I ask people..no one I know of

has...

I know that IV gamma works for me...I was in a study that used it and I

nearly got well. But they won't give it to me..no matter what. The other

people in the study apparently didn't get as good a response as I did. I

relapsed badly several months after the last infusion with more symptoms

than I had prior to the infusions. But I'd give an arm to get it again. I

can't afford it though...and I don't see anyone with money willing to help

me out.

As far as treating viruses..I'm on Valtrex. Granted..3 gm a day doesn't seem

to be a large enough dose..it barely keeps the shingles at bay. My doc will

not test for any " live " viruses...he doesn't believe in it..why?? because

the HMO will not pay for such tests.

August 5, 2002

,

I was tested by MDL and it was a PCR test, but it did not show me how bad the

infection is. My Dr. is involved in a study now on the effects of it on

Fibro/CFS. She thinks it plays a big role. She said most people feel begin to

feel better after 2 months of treatment but I have to be treated for 4 months.

What did you mean by everyone shows up positive? I find it strange I was

negative until my teeth were worked on and since then I have felt even worse

than before. Dr. says it stirred up the nano....Anyway...we will see how it

goes.

Take care,

Suzanne

Nanobacteria

In a message dated 8/4/02 10:22:58 PM Eastern Daylight Time,

writes:

> I just found out that I have tested positive for the nanobacteria. I tested

> negative a month ago, but then I had my mercury fillings removed and now I

> am positive. The Dr. thinks that it was hiding in the decay of my teeth.

> I have started treatment and was wondering if any of you have had any

> experience w/this bacteria? It seems like it is very hard to kill because

> it has a hard calcium shell around it that protects it from antibiotics.

> My Dr. seems to think it is playing a big part in my Fibro...I also have

> HHV6, Stealth, Staph infection and now this....Any info is appreciated.

>

Suzanne. I am getting my doc to look into it myself. It is my understanding

that the Nano lab is concentrating on cardio benefits b/c that is where they

have the most science to support the benefit of treatment. That does not

mean, of course, that nano's don't contribute to our FMS or CFS in some way

or another. That is why I am going to have the test. In talking to a lab

technician, virtually everyone shows up positive but their test is PCR I

think, and tells you to what degree you are positive so you can see if there

is a lot or just a little. I presume you have a lot and are warranted going

under treatment? Well, I guess we will know if it benefits you in any way

maybe 4 months from now. Let us know how it comes. Make sure you supplement

with plenty of pro-biotics while under treatment. Good luck.

January 29, 2003

Doris, rumor has it many people may test positive in nanobacteria,

probably especially sick folks like us. I already know I am positive

so here's my game plan. One can get tested either with MDL via PCR

or Nanobac Labs via antibody (I did the latter). I have scripts for

three abx for trial in case I have lyme or just want to try them

period, doxy the main one and coupled with either Biaxin or Zithromax

and if I ever use them I will plan on taking an oral EDTA chelator

such as Kelate Max or Detox Max (both the same I think) so I can at

least kill off some nano's at same time as abx treatment and have

another reason to use abx (other than to kill lyme that showed up on

my Bowen test). Nanobac Labs uses EDTA suppositories and oral

tetracycline so tetracycline similar abx may work best. For abx

experts here (too bad a is not here right now), isn't doxy a type

of tetracycline or is it just similar? Just sent off for IGeneX WB's

btw so I should hope to add this to my collection of lyme testing

(first lyme testing was done by Labcorp which Klinghardt nurse said

was 80% false negative, but hey, insurance paid for it and it was

first step in lyme testing).

> Just an FYI, I read a magazine today called Alternative Medicine

and was

> surprised at the number of relevant articles. There was one on the

> inadaquecy of most thyroid testing, and said we should go back to

the old

> method of TRH stimulation. There was an article on CoQ10. Another

on

> healthy fats. And most surprisingly, one on Nanobacteria.

>

> Nanobacteria has discussed here before and some people have said

that they

> tested positive, but I wondered if anyone has been treated and

thinks they

> got better from it.

> Thanks,

> Doris

January 29, 2003

This broad spectrum approach worries me. I've been taking clindamycin

and tetracycline for a couple weeks now. It's helping clear the brain

fog, and must be working on the staph a bit, but when I got my test

results, I have strep that's resistant to clindamycin and teracyline.

So while I may be knocking down some bugs, I may be increasing

others. And strep, although not the worst bacteria, is known to lead

to heart problems. So it's much better to get your organisms

identified with the sensitivites, and treat effectively, than blindly.

I also had great results with cipro, but my staph is now showing

moderate resistance to it. Unfortunately, if I'd been given really

high doses in the beginning, it could have really helped, but the way

I took it, it allowed my organisms to get the upper hand. So I've now

got 3 abx that I've become resistant to in the last few months. This

is why options like high dosages, I.V., inhalation, and/or combining

several abx is so important.

penny

> > Just an FYI, I read a magazine today called Alternative Medicine

> and was

> > surprised at the number of relevant articles. There was one on

the

> > inadaquecy of most thyroid testing, and said we should go back to

> the old

> > method of TRH stimulation. There was an article on CoQ10.

Another

> on

> > healthy fats. And most surprisingly, one on Nanobacteria.

> >

> > Nanobacteria has discussed here before and some people have said

> that they

> > tested positive, but I wondered if anyone has been treated and

> thinks they

> > got better from it.

> > Thanks,

> > Doris

January 31, 2003

Doxycycline is indeed a variation of tetracycline. But it works poorly to

not at all for nanobacteria.

The big problem with tetracycline is that it binds to calcium, and so you

have to be very careful about not consuming any food containing calcium

within 3 hours of taking it. Doxy doesn't bind to calcium, so it doesn't

have this restriction.

But the calcium binding is exactly what makes it effective against

nanobacteria.

++PLS

Re: Nanobacteria