Re: Sinusitis Treatment Gets Fast Track Status from FDA (Amphotericin B)

[Guest guest]

I do believe this confirms 's stance even further Penny. I know

you're not a fan of the fungi = sinusitis camp but In my personaly

expeirence at least this is very much the case. I am taking oral

Amphotericin B along with Lamisil and I can recommend them highly.

My own situation continues to improve and I am now enjoying working 6-7

hours hard physical labour each day with an almost 'normal' day.

bleu

On 30 Apr 2006, at 02:17, penny wrote:

> New Sinusitis Treatment Gets Fast Track Status from FDA

> SinuNase, an intranasal Amphotericin B formulation by Accentia

> Biopharmaceuticals for the treatment of chronic sinusitis, has been

> given Fast Track status by the U.S. Food and Drug Administration.

> According to Accentia, SinuNase is the first and only drug candidate

> for chronic sinusitis to receive Fast Track status from the FDA...

> Click here to read the entire article.

> Direct URL:

> http://www.newsdial.com/sinusitis/sinusitis-treatment-fda.html

>

> penny

>

>

>

>

>

>

[Guest guest]

Bleu

What action are you going to take if your anti infectives stop

working???You where swearing black and blue that you had some form

of crisis which a few people where following you on several months

ago.Something that needed supplementation to the max of some sort.

I believe strongly in antifungals and feel you are so fortunate to

have 2 agents going at once cause the amphotecerin B ain't going to

do it on it's own IMO- I also believe that you can still use an

agent that kills bacteria- cause you just need the numbers going

down by the billions...

Cheers agent bleu

>

> > New Sinusitis Treatment Gets Fast Track Status from FDA

> > SinuNase, an intranasal Amphotericin B formulation by Accentia

> > Biopharmaceuticals for the treatment of chronic sinusitis, has

been

> > given Fast Track status by the U.S. Food and Drug Administration.

> > According to Accentia, SinuNase is the first and only drug

candidate

> > for chronic sinusitis to receive Fast Track status from the

FDA...

> > Click here to read the entire article.

> > Direct URL:

> > http://www.newsdial.com/sinusitis/sinusitis-treatment-fda.html

> >

> > penny

> >

> >

> >

> >

> >

> >

[Guest guest]

Im planing to do amp b and lamasil for at least a year, im about at the

5-6 months mark now. The improvements on this regime have been the most

profound. I have limped ever since getting ill in about 98 and even

though did kill the bulk of the bacteria with abx from about 2001-2003

as you probably know I was still taking courses of abx until about

2005.

Since the crisis, 14 months ago, (benicar induced) I have really been

messed up. but as soon as I started the antifungals things started to

improve and to my delight they continue.

If the shit hits the fan again I guess my preferred agent would be more

of the same or maybe other antifungals, nystatin and if and are needed

i would go to prestinamycine as I swear that is both anti-fungal and

antibacterial.

But so far so good with the 2 im on now..

For my money I think is right on the mark with antifungals, but I

air caution with benicar to anyone before they have got on top of their

main issues as I think beniar can hide the problems for a few months

all the while they progress until danger erupts.

For myself at least I can say that I did have the fungi problem (though

not in this manifestation) before the bacteria infection, where

sinusitis was one of the major problems.

This I all suspect started after problems with h.Pylori that I had in

about 95-96.

given my current experience and ups and downs i can say 100% that if I

was treated promptly and sufficiently at the necessary times I would

have had a very different last 7-8 years.

I think one of the main challenges facing us in general is the inherent

problem that lies (i think) at the heart of this collection of

problems.

This is of who can one trust and who is an authority on these subjects

and what are the legal ramifications of being an authority.

Currently the status quo would have it that practicing doctors are

subject to malpractice claims only if they do not follow the status

quo. They have no responsibility beyond this and seemingly can avoid

any problems even if they fail to treat when they should if they can

argue insufficient / ignorance.

Thus, when the scientific community is distorted like it currently

seems to be with science funded and controlled via the current

authorities whose impartiality is in question IMO, and such a void

between what we have all found in practice and what is claimed as fact

by the status quo.

The most significant question would appear to me, to be, who are the

real authorities!

bleu

On 1 May 2006, at 01:07, dumbaussie2000 wrote:

> Bleu

> What action are you going to take if your anti infectives stop

> working???You where swearing black and blue that you had some form

> of crisis which a few people where following you on several months

> ago.Something that needed supplementation to the max of some sort.

> I believe strongly in antifungals and feel you are so fortunate to

> have 2 agents going at once cause the amphotecerin B ain't going to

> do it on it's own IMO- I also believe that you can still use an

> agent that kills bacteria- cause you just need the numbers going

> down by the billions...

> Cheers agent bleu

>

>

>

>

>

>

> >

> > >  New Sinusitis Treatment Gets Fast Track Status from FDA

> > >  SinuNase, an intranasal Amphotericin B formulation by Accentia

> > > Biopharmaceuticals for the treatment of chronic sinusitis, has

> been

> > > given Fast Track status by the U.S. Food and Drug Administration.

> > >  According to Accentia, SinuNase is the first and only drug

> candidate

> > > for chronic sinusitis to receive Fast Track status from the

> FDA...

> > > Click here to read the entire article.

> > >  Direct URL:

> > > http://www.newsdial.com/sinusitis/sinusitis-treatment-fda.html

> > >

> > >  penny

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]



Bleu, I've been on Lamisil on & off [mostly on] for coming up six years , its about one a week now ..Lamisil remains very effective , I don't think resistance is a problem with the drug ...I don't think the new treatment will work , fungi "root" treating topically is like mowing the grass ,it just grows again .I do believe a systemic is required.

Know what you mean about being treated properly at the onset ..the sad thing is the yeast pipeline is still open full bore . We are comparatively lucky , we have the resources both mentally & Financially that enable us to recognise the cause & self treat, How many more are suffering in complete ignorance of what ails them

, ..

-----Original Message-----From: infections [mailto:infections ]On Behalf Of ColourbleuSent: 01 May 2006 10:33infections Subject: Re: [infections] Re: Sinusitis Treatment Gets Fast Track Status from FDA (Amphotericin

Im planing to do amp b and lamasil for at least a year, im about at the 5-6 months mark now. The improvements on this regime have been the most profound. I have limped ever since getting ill in about 98 and even though did kill the bulk of the bacteria with abx from about 2001-2003 as you probably know I was still taking courses of abx until about 2005. Since the crisis, 14 months ago, (benicar induced) I have really been messed up. but as soon as I started the antifungals things started to improve and to my delight they continue. If the shit hits the fan again I guess my preferred agent would be more of the same or maybe other antifungals, nystatin and if and are needed i would go to prestinamycine as I swear that is both anti-fungal and antibacterial.But so far so good with the 2 im on now..For my money I think is right on the mark with antifungals, but I air caution with benicar to anyone before they have got on top of their main issues as I think beniar can hide the problems for a few months all the while they progress until danger erupts.For myself at least I can say that I did have the fungi problem (though not in this manifestation) before the bacteria infection, where sinusitis was one of the major problems.This I all suspect started after problems with h.Pylori that I had in about 95-96.given my current experience and ups and downs i can say 100% that if I was treated promptly and sufficiently at the necessary times I would have had a very different last 7-8 years.I think one of the main challenges facing us in general is the inherent problem that lies (i think) at the heart of this collection of problems.This is of who can one trust and who is an authority on these subjects and what are the legal ramifications of being an authority.Currently the status quo would have it that practicing doctors are subject to malpractice claims only if they do not follow the status quo. They have no responsibility beyond this and seemingly can avoid any problems even if they fail to treat when they should if they can argue insufficient / ignorance.Thus, when the scientific community is distorted like it currently seems to be with science funded and controlled via the current authorities whose impartiality is in question IMO, and such a void between what we have all found in practice and what is claimed as fact by the status quo. The most significant question would appear to me, to be, who are the real authorities! bleuOn 1 May 2006, at 01:07, dumbaussie2000 wrote:

Bleu What action are you going to take if your anti infectives stop working???You where swearing black and blue that you had some form of crisis which a few people where following you on several months ago.Something that needed supplementation to the max of some sort.I believe strongly in antifungals and feel you are so fortunate to have 2 agents going at once cause the amphotecerin B ain't going to do it on it's own IMO- I also believe that you can still use an agent that kills bacteria- cause you just need the numbers going down by the billions...Cheers agent bleu > > > New Sinusitis Treatment Gets Fast Track Status from FDA> > SinuNase, an intranasal Amphotericin B formulation by Accentia > > Biopharmaceuticals for the treatment of chronic sinusitis, has been > > given Fast Track status by the U.S. Food and Drug Administration.> > According to Accentia, SinuNase is the first and only drug candidate > > for chronic sinusitis to receive Fast Track status from the FDA... > > Click here to read the entire article.> > Direct URL: > > http://www.newsdial.com/sinusitis/sinusitis-treatment-fda.html> >> > penny> >> >> >> >> >> >

[Guest guest]

I am yet to come across someone who has been treated efficiently and

adequately by the so called authorities. For months my GF recently had

an infection from maybe teeth that spread to throat, not sure where it

came from, but after the run around, is now self administering

Pristenamycine and is finally getting on top of the bugger.

the odds are stacked against you thats for certain.

but the moral of the story would appear to be careful of who you trust

as the white coats just don't cut it in my book anymore.

bleu

On 1 May 2006, at 12:12, Jaep wrote:

> Bleu, I've been on Lamisil on & off [mostly on] for coming up six

> years , its about one a week now ..Lamisil remains very effective , I

> don't think resistance is a problem with the drug ...I don't think the

> new treatment will work , fungi " root " treating topically is like

> mowing the grass ,it just grows again .I do believe a systemic is

> required.

>  

> Know what you mean about being treated properly at the onset ..the sad

> thing is the yeast pipeline is still open full bore . We are

> comparatively lucky , we have the resources both mentally &

> Financially that enable us to recognise the cause & self treat, How

> many more are suffering in complete ignorance of what ails them

>  

> , ..

>  

>  

>  

>

>

>   Re: [infections] Re: Sinusitis Treatment Gets

> Fast Track Status from FDA (Amphotericin

>

>> Im planing to do amp b and lamasil for at least a year, im about at

>> the 5-6 months mark now. The improvements on this regime have been

>> the most profound. I have limped ever since getting ill in about 98

>> and even though did kill the bulk of the bacteria with abx from about

>> 2001-2003 as you probably know I was still taking courses of abx

>> until about 2005.

>>

>> Since the crisis, 14 months ago, (benicar induced) I have really been

>> messed up. but as soon as I started the antifungals things started to

>> improve and to my delight they continue.

>>

>> If the shit hits the fan again I guess my preferred agent would be

>> more of the same or maybe other antifungals, nystatin and if and are

>> needed i would go to prestinamycine as I swear that is both

>> anti-fungal and antibacterial.

>>

>> But so far so good with the 2 im on now..

>>

>> For my money I think is right on the mark with antifungals, but

>> I air caution with benicar to anyone before they have got on top of

>> their main issues as I think beniar can hide the problems for a few

>> months all the while they progress until danger erupts.

>>

>> For myself at least I can say that I did have the fungi problem

>> (though not in this manifestation) before the bacteria infection,

>> where sinusitis was one of the major problems.

>>

>> This I all suspect started after problems with h.Pylori that I had in

>> about 95-96.

>>

>> given my current experience and ups and downs i can say 100% that if

>> I was treated promptly and sufficiently at the necessary times I

>> would have had a very different last 7-8 years.

>>

>> I think one of the main challenges facing us in general is the

>> inherent problem that lies (i think) at the heart of this collection

>> of problems.

>>

>> This is of who can one trust and who is an authority on these

>> subjects and what are the legal ramifications of being an authority.

>>

>> Currently the status quo would have it that practicing doctors are

>> subject to malpractice claims only if they do not follow the status

>> quo. They have no responsibility beyond this and seemingly can avoid

>> any problems even if they fail to treat when they should if they can

>> argue insufficient / ignorance.

>>

>> Thus, when the scientific community is distorted like it currently

>> seems to be with science funded and controlled via the current

>> authorities whose impartiality is in question IMO, and such a void

>> between what we have all found in practice and what is claimed as

>> fact by the status quo.

>>

>> The most significant question would appear to me, to be, who are the

>> real authorities!

>>

>> bleu

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> On 1 May 2006, at 01:07, dumbaussie2000 wrote:

>>

>>> Bleu

>>> What action are you going to take if your anti infectives stop

>>> working???You where swearing black and blue that you had some form

>>> of crisis which a few people where following you on several months

>>> ago.Something that needed supplementation to the max of some sort.

>>> I believe strongly in antifungals and feel you are so fortunate to

>>> have 2 agents going at once cause the amphotecerin B ain't going to

>>> do it on it's own IMO- I also believe that you can still use an

>>> agent that kills bacteria- cause you just need the numbers going

>>> down by the billions...

>>> Cheers agent bleu

>>>

>>>

>>>

>>>

>>>

>>>

>>> >

>>> > >  New Sinusitis Treatment Gets Fast Track Status from FDA

>>> > >  SinuNase, an intranasal Amphotericin B formulation by Accentia

>>> > > Biopharmaceuticals for the treatment of chronic sinusitis, has

>>> been

>>> > > given Fast Track status by the U.S. Food and Drug Administration.

>>> > >  According to Accentia, SinuNase is the first and only drug

>>> candidate

>>> > > for chronic sinusitis to receive Fast Track status from the

>>> FDA...

>>> > > Click here to read the entire article.

>>> > >  Direct URL:

>>> > > http://www.newsdial.com/sinusitis/sinusitis-treatment-fda.html

>>> > >

>>> > >  penny

>>> > >

>>> > >

>>> > >

>>> > >

>>> > >

>>> > >

[Guest guest]

Bleu

The only suggestion I vcan make is that dead bugs don't mutate, so

if you are able to keep the bugs going down in numbers put into

practise your pristinamycin(tetracycline) as a third agent.I think

that the lamisil is the missing link as far as success goes cause I

think it really has some penetratability as it cures 'nail rot'

which is something you'd think an agent would have difficulty

penetrating as it's supposedly a dead body part.

The benicar in my opinion is not the right drug if it's decreasing

your blood pressure- if you slowed blood down when the body is

trying hard to push it into problem area's you get complicationsIMO.

tony

> > >

> > > >  New Sinusitis Treatment Gets Fast Track Status from FDA

> > > >  SinuNase, an intranasal Amphotericin B formulation by

Accentia

> > > > Biopharmaceuticals for the treatment of chronic sinusitis,

has

> > been

> > > > given Fast Track status by the U.S. Food and Drug

Administration.

> > > >  According to Accentia, SinuNase is the first and only drug

> > candidate

> > > > for chronic sinusitis to receive Fast Track status from the

> > FDA...

> > > > Click here to read the entire article.

> > > >  Direct URL:

> > > > http://www.newsdial.com/sinusitis/sinusitis-treatment-

fda.html

> > > >

> > > >  penny

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Tony, you may be right, although remember, ARBs (angiotensin II

receptor blockers like Benicar) don't really reduce bp by much but

they DO impact inflammation a lot. Studies are showing that ARBS and

Ace Inhibitors are effective in preventing cancer and extending

life. We all seem to be stuck in a loop of out of control

inflammation which apparently leads to cancer and blocked arteries,

so maybe it's worth the trade off?

penny

Moskowitz MD, MA(Oxon.), FACP at June 4, 2005 09:42

AM

In the fall of 2002, we began publishing a series of papers showing

that angiotensin I-converting enzyme (ACE) is a major aging gene. The

papers can be downloaded from our company website at:

http://www.genomed.com/index.cfm?action=investor & drill=publications

We've already been able to show that it's possible to achieve

regression of atherosclerosis by aggressive use of ACE inhibitors.

For example, we published patient outcomes showing regression of

diabetic and hypertensive kidney failure. Since 2/3 of people die

from atherosclerosis, this is not a bad first step.

What's even more interesting is that overactivity of ACE seems to be

behind most cancers. One-third of people in the First World die of

cancer. ACE inhibitors, which are normally used for high blood

pressure, may actually help treat as well as prevent cancers.

Angiotensin II, the product of ACE, is a key angiogenesis factor, and

operates upstream of VEGF. So ACE inhibitors are anti-angiogenesis

factors.

Finally, aging involves neurodegenerative diseases like Alzheimer's

and Parkinson's. We and others are seeing good effects of ACE

inhibition on these diseases.

Before states rush to spend billions of dollars on stem cell

research, they could spend a few hundred thousand dollars on clinical

research using ACE inhibitors. I'm confident we can save at least 30%

of health care costs, and lengthen life by 5-10 years with better

quality of life, if we just put the adult population on the right

dose of the right ACE inhibitor (for which GenoMed owns the patent-

pending).

[Posted by: Moskowitz MD, MA(Oxon.), FACP at June 4, 2005 09:42

AM]

http://www.fightaging.org/archives/000412.php

>

> Bleu

> The only suggestion I vcan make is that dead bugs don't mutate, so

> if you are able to keep the bugs going down in numbers put into

> practise your pristinamycin(tetracycline) as a third agent.I think

> that the lamisil is the missing link as far as success goes cause

I

> think it really has some penetratability as it cures 'nail rot'

> which is something you'd think an agent would have difficulty

> penetrating as it's supposedly a dead body part.

>

> The benicar in my opinion is not the right drug if it's decreasing

> your blood pressure- if you slowed blood down when the body is

> trying hard to push it into problem area's you get

complicationsIMO.

> tony

[Guest guest]

>The only suggestion I vcan make is that dead bugs don't mutate, so >if you are able to keep the bugs going down in numbers put into >practise your pristinamycin(tetracycline) as a third agent.

Tony,

Pristinamycine is not a tetracycline it's a peptolide (close to the macrolides) and synergistine, I think it's only sold in France, Belgium (brand name Pyostacine) and in Holland and Germany (brand name Stapyocine).

I used it in combo with Tinidazole and I thought I was cured...for a week then the shit hit the fan!! I got the very worst headache from Hell.

Nelly

[infections] Re: Sinusitis Treatment Gets Fast Track Status from FDA (Amphotericin

BleuThe only suggestion I vcan make is that dead bugs don't mutate, so if you are able to keep the bugs going down in numbers put into practise your pristinamycin(tetracycline) as a third agent.I think that the lamisil is the missing link as far as success goes cause I think it really has some penetratability as it cures 'nail rot' which is something you'd think an agent would have difficulty penetrating as it's supposedly a dead body part.The benicar in my opinion is not the right drug if it's decreasing your blood pressure- if you slowed blood down when the body is trying hard to push it into problem area's you get complicationsIMO.tony> > >> > > >Â New Sinusitis Treatment Gets Fast Track Status from FDA> > > >Â SinuNase, an intranasal Amphotericin B formulation by Accentia> > > > Biopharmaceuticals for the treatment of chronic sinusitis, has> > been> > > > given Fast Track status by the U.S. Food and Drug Administration.> > > >Â According to Accentia, SinuNase is the first and only drug> > candidate> > > > for chronic sinusitis to receive Fast Track status from the> > FDA...> > > > Click here to read the entire article.> > > >Â Direct URL:> > > > http://www.newsdial.com/sinusitis/sinusitis-treatment-fda.html> > > >> > > >Â penny> > > >> > > >> > > >> > > >> > > >> > > >

[Guest guest]

Nelly, I can't recall. Have you been tested for Intercranial

Hypertension (aka pseudotumor cerebri). Or perhaps chronic

intercranial hypotension? Both involve csf leaks and severe

headache, neuro problems, light sensitivity, etc.

Here's one group on IH .

http://groups.msn.com/pseudotumorcerebri/ptcdefined.msnw

I vaguely remember you commenting on this before. I'd just like to

hear if you've been tested for it and what you know.

Minocycline can induce Pseudotumor cerebri, which is what I think

happened to me, why I reacted so violently to it. I also think the

reason some people respond so well to anti-inflammatories is because

it reduces this swelling/pressure on the brain. What sorts of anti-

inflammatories have you tried?

You know good old aspirin/ibuprofen antiinflammatories seem to

benefit many of us. I started having real problems once I could no

tolerate aspirin type products. Benicar has been a life saver for me

in that regard.

penny

> I used it in combo with Tinidazole and I thought I was cured...for

a week then the shit hit the fan!! I got the very worst headache

from Hell.

>

> Nelly

>

[Guest guest]

Penny,

Thanks for your concern. All the abx that work (ie: that help me with all symptoms incl brain fog, fatigue, feeling fluey etc) seem to also give me a really bad headache after a few days on them. I am forever trying to juggle the treatments so that I can treat and yet not get the absolutely horrific headaches that seem to be the result of treatment working.

I don't know exactly what causes them, they sure feel like Intercranial Hypertension but as I don't go to doctors no more, I don't have tests for anything! I see my ID specialist every 3 months and that's it. I don't think he believes in what most other doctors do any more than I do, this is why I can bear to see him 4 times a year!

My headaches don't respond to ANYTHING, antiinflammatories (ibuprofen), aspirin, paracetamol, don't even touch them, not one tiny bit, nothing. Codeine, tramadol and clonazepam help if I take a lot and knock myself out. Frozen peas on the head helps a bit. I have awful light sensitivity as well.

Nelly

[infections] Re: Sinusitis Treatment Gets Fast Track Status from FDA (Amphotericin

Nelly, I can't recall. Have you been tested for Intercranial Hypertension (aka pseudotumor cerebri). Or perhaps chronic intercranial hypotension? Both involve csf leaks and severe headache, neuro problems, light sensitivity, etc.Here's one group on IH .http://groups.msn.com/pseudotumorcerebri/ptcdefined.msnwI vaguely remember you commenting on this before. I'd just like to hear if you've been tested for it and what you know.Minocycline can induce Pseudotumor cerebri, which is what I think happened to me, why I reacted so violently to it. I also think the reason some people respond so well to anti-inflammatories is because it reduces this swelling/pressure on the brain. What sorts of anti-inflammatories have you tried? You know good old aspirin/ibuprofen antiinflammatories seem to benefit many of us. I started having real problems once I could no tolerate aspirin type products. Benicar has been a life saver for me in that regard.penny> I used it in combo with Tinidazole and I thought I was cured...for a week then the shit hit the fan!! I got the very worst headache from Hell. > > Nelly>

[Guest guest]

Nelly

Sounds like a little similar to some of the symptoms I had during my

crashes.

I found that alprazolam worked well and b vits for the sensitivity to

light.

Very interestingly all these symptoms are being dealt with by the

antifungals.

bleu

On 1 May 2006, at 19:51, Nelly Pointis wrote:

> Penny,

>  

> Thanks for your concern. All the abx that work (ie: that help me with

> all symptoms incl brain fog, fatigue, feeling fluey etc) seem to also

> give me a really bad headache after a few days on them. I am forever

> trying to juggle the treatments so that I can treat and yet not get

> the absolutely horrific headaches that seem to be the result of

> treatment working.

>  

> I don't know exactly what causes them, they sure feel like

> Intercranial Hypertension but as I don't go to doctors no more, I

> don't have tests for anything! I see my ID specialist every 3 months

> and that's it. I don't think he believes in what most other doctors do

> any more than I do, this is why I can bear to see him 4 times a year!

>  

> My headaches don't respond to ANYTHING, antiinflammatories

> (ibuprofen), aspirin, paracetamol, don't even touch them, not one tiny

> bit, nothing. Codeine, tramadol and clonazepam help if I take a lot

> and knock myself out. Frozen peas on the head helps a bit. I have

> awful light sensitivity as well.

>  

> Nelly

>  

>  

>  

>  

>> [infections] Re: Sinusitis Treatment Gets

>> Fast Track Status from FDA (Amphotericin

>>

>> Nelly, I can't recall. Have you been tested for Intercranial

>> Hypertension (aka pseudotumor cerebri).  Or perhaps chronic

>> intercranial hypotension? Both involve csf leaks and severe

>> headache, neuro problems, light sensitivity, etc.

>>

>> Here's one group on IH .

>>

>> http://groups.msn.com/pseudotumorcerebri/ptcdefined.msnw

>>

>> I vaguely remember you commenting on this before. I'd just like to

>> hear if you've been tested for it and what you know.

>>

>> Minocycline can induce Pseudotumor cerebri, which is what I think

>> happened to me, why I reacted so violently to it. I also think the

>> reason some people respond so well to anti-inflammatories is because

>> it reduces this swelling/pressure on the brain. What sorts of anti-

>> inflammatories have you tried?

>>

>> You know good old aspirin/ibuprofen antiinflammatories seem to

>> benefit many of us. I started having real problems once I could no

>> tolerate aspirin type products. Benicar has been a life saver for me

>> in that regard.

>>

>> penny

>>

>>

>> > I used it in combo with Tinidazole and I thought I was cured...for

>> a week then the shit hit the fan!! I got the very worst headache

>> from Hell.

>> >

>> > Nelly

>> >

>>

>>

>>

>>

>>

>>

[Guest guest]

Nelly, seriously, you should ask your i.d. doc about pseudotumor

cerebri (or intercranial hypertension). You sound like a classic

case. I think there may be many more of us in this category than we

realize.

One of our I & I friends was dx'd with IH (back during the TM

brouhaha). I haven't heard from her for a while, but her docs were

telling her it's fatal. Unfortunately it is if you let it go too

long. You need a spinal fluid sample to test, and she didn't want to

have the tap after so many bad experiences in the past. But I fear

what might happen if you let it go.

Kind of ironic, because Tony's been claiming for ages that many of

us are suffering from encephalitis and CSF leaks. I actually now

think there may be something to this. Any sinus fistulas in the head

(due to infection/necrosis) can potentially be responsible for tiny

cfs leaks.

I do belive the reason Benicar has helped me so much and so many of

my neuro/headache symptoms, is because it has reduced inflammation

on my brain. I remember from day one that I felt that a huge

pressure had been removed from the back of my head. My teeth

chattering/jaw clenching stopped and my brain fog lifted. Now, I've

had spheonoid surgery (back of the head), and my shoulder and neck

pain have been all but eliminated. So many of my problems have been

coming from my head, and I don't mean mental.

penny

>

> Penny,

>

> Thanks for your concern. All the abx that work (ie: that help me

with all symptoms incl brain fog, fatigue, feeling fluey etc) seem

to also give me a really bad headache after a few days on them. I am

forever trying to juggle the treatments so that I can treat and yet

not get the absolutely horrific headaches that seem to be the result

of treatment working.

>

> I don't know exactly what causes them, they sure feel like

Intercranial Hypertension but as I don't go to doctors no more, I

don't have tests for anything! I see my ID specialist every 3 months

and that's it. I don't think he believes in what most other doctors

do any more than I do, this is why I can bear to see him 4 times a

year!

>

> My headaches don't respond to ANYTHING, antiinflammatories

(ibuprofen), aspirin, paracetamol, don't even touch them, not one

tiny bit, nothing. Codeine, tramadol and clonazepam help if I take a

lot and knock myself out. Frozen peas on the head helps a bit. I

have awful light sensitivity as well.

>

> Nelly

>

>

>

>

> [infections] Re: Sinusitis Treatment

Gets Fast Track Status from FDA (Amphotericin

>

>

> Nelly, I can't recall. Have you been tested for Intercranial

> Hypertension (aka pseudotumor cerebri). Or perhaps chronic

> intercranial hypotension? Both involve csf leaks and severe

> headache, neuro problems, light sensitivity, etc.

>

> Here's one group on IH .

>

> http://groups.msn.com/pseudotumorcerebri/ptcdefined.msnw

>

> I vaguely remember you commenting on this before. I'd just like

to

> hear if you've been tested for it and what you know.

>

> Minocycline can induce Pseudotumor cerebri, which is what I

think

> happened to me, why I reacted so violently to it. I also think

the

> reason some people respond so well to anti-inflammatories is

because

> it reduces this swelling/pressure on the brain. What sorts of

anti-

> inflammatories have you tried?

>

> You know good old aspirin/ibuprofen antiinflammatories seem to

> benefit many of us. I started having real problems once I could

no

> tolerate aspirin type products. Benicar has been a life saver

for me

> in that regard.

>

> penny

>

>

> > I used it in combo with Tinidazole and I thought I was

cured...for

> a week then the shit hit the fan!! I got the very worst headache

> from Hell.

> >

> > Nelly

> >

>

>

>

>

>

>

>

[Guest guest]

I suspect I have had something like this. sensations from sinuses felt

very much like this at times

On 1 May 2006, at 22:04, penny wrote:

> Kind of ironic, because Tony's been claiming for ages that many of

> us are suffering from encephalitis and CSF leaks. I actually now

> think there may be something to this. Any sinus fistulas in the head

> (due to infection/necrosis) can potentially be responsible for tiny

> cfs leaks.

[Guest guest]

OK, everybody is telling me my headches are going to kill me if I don't DO SOMETHING, but what? No way I will let anybody perform a spinal tap on me, my ID doc knows I get these monster headaches, I don't know what we would learn from a spinal tap that we don't already suspect. I know I have some form of encephalitis.

Thanks everybody for your concern but now I'm even more freaked out:) In fact I wasn't before, I was just writing about my headaches as a BTW type comment. Can't afford to get freaked out. No good!

Nelly

[infections] Re: Sinusitis Treatment Gets Fast Track Status from FDA (Amphotericin > > > Nelly, I can't recall. Have you been tested for Intercranial > Hypertension (aka pseudotumor cerebri). Or perhaps chronic > intercranial hypotension? Both involve csf leaks and severe > headache, neuro problems, light sensitivity, etc.> > Here's one group on IH .> > http://groups.msn.com/pseudotumorcerebri/ptcdefined.msnw> > I vaguely remember you commenting on this before. I'd just like to > hear if you've been tested for it and what you know.> > Minocycline can induce Pseudotumor cerebri, which is what I think > happened to me, why I reacted so violently to it. I also think the > reason some people respond so well to anti-inflammatories is because > it reduces this swelling/pressure on the brain. What sorts of anti-> inflammatories have you tried? > > You know good old aspirin/ibuprofen antiinflammatories seem to > benefit many of us. I started having real problems once I could no > tolerate aspirin type products. Benicar has been a life saver for me > in that regard.> > penny> > > > I used it in combo with Tinidazole and I thought I was cured...for > a week then the shit hit the fan!! I got the very worst headache > from Hell. > > > > Nelly> >> > > > > > >

[Guest guest]

Penny

That is what I was trying to point to. Some did well on benicar and

it actually increased there BP-remember many cfs patients run the

low BP numbers more often than not.There's also the inflammation

clamp which was lost early and never recovered in my own experiments

with the benicar.

> >

>

> > Bleu

> > The only suggestion I vcan make is that dead bugs don't mutate,

so

> > if you are able to keep the bugs going down in numbers put into

> > practise your pristinamycin(tetracycline) as a third agent.I

think

> > that the lamisil is the missing link as far as success goes

cause

> I

> > think it really has some penetratability as it cures 'nail rot'

> > which is something you'd think an agent would have difficulty

> > penetrating as it's supposedly a dead body part.

> >

> > The benicar in my opinion is not the right drug if it's

decreasing

> > your blood pressure- if you slowed blood down when the body is

> > trying hard to push it into problem area's you get

> complicationsIMO.

> > tony

>

[Guest guest]

Nelly is it also known as synercid. Synercid is basically a french

invention for vancomycin resistant enterococcus. It's a macrolide

cross- I have the testing discs.It's OK but does build resistance

with the sinus bugs.

> > > >

> > > > >Â New Sinusitis Treatment Gets Fast Track Status from

FDA

> > > > >Â SinuNase, an intranasal Amphotericin B formulation by

> Accentia

> > > > > Biopharmaceuticals for the treatment of chronic

sinusitis,

> has

> > > been

> > > > > given Fast Track status by the U.S. Food and Drug

> Administration.

> > > > >Â According to Accentia, SinuNase is the first and only

drug

> > > candidate

> > > > > for chronic sinusitis to receive Fast Track status from

the

> > > FDA...

> > > > > Click here to read the entire article.

> > > > >Â Direct URL:

> > > > > http://www.newsdial.com/sinusitis/sinusitis-treatment-

> fda.html

> > > > >

> > > > >Â penny

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Yes, it belongs to both classes, but not to the tetracyclines.

Nelly

[infections] Re: Sinusitis Treatment Gets Fast Track Status from FDA (Amphotericin

Nelly is it also known as synercid. Synercid is basically a french invention for vancomycin resistant enterococcus. It's a macrolide cross- I have the testing discs.It's OK but does build resistance with the sinus bugs.> > > >> > > > >Â New Sinusitis Treatment Gets Fast Track Status from FDA> > > > >Â SinuNase, an intranasal Amphotericin B formulation by > Accentia> > > > > Biopharmaceuticals for the treatment of chronic sinusitis, > has> > > been> > > > > given Fast Track status by the U.S. Food and Drug > Administration.> > > > >Â According to Accentia, SinuNase is the first and only drug> > > candidate> > > > > for chronic sinusitis to receive Fast Track status from the> > > FDA...> > > > > Click here to read the entire article.> > > > >Â Direct URL:> > > > > http://www.newsdial.com/sinusitis/sinusitis-treatment-> fda.html> > > > >> > > > >Â penny> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >

[Guest guest]

Yes, but then there's me and the anti-inflammatory benefits have

continued to this day. Big benefits. Otherwise, believe me, i

wouldn't be forking over the $200 per month or so I pay for Benicar.

penny

> > >

> >

> > > Bleu

> > > The only suggestion I vcan make is that dead bugs don't

mutate,

> so

> > > if you are able to keep the bugs going down in numbers put

into

> > > practise your pristinamycin(tetracycline) as a third agent.I

> think

> > > that the lamisil is the missing link as far as success goes

> cause

> > I

> > > think it really has some penetratability as it cures 'nail

rot'

> > > which is something you'd think an agent would have difficulty

> > > penetrating as it's supposedly a dead body part.

> > >

> > > The benicar in my opinion is not the right drug if it's

> decreasing

> > > your blood pressure- if you slowed blood down when the body is

> > > trying hard to push it into problem area's you get

> > complicationsIMO.

> > > tony

> >

>

[Guest guest]

Nelly, Nelly, well think of it this way. If it's not your headaches

that kill you, it will be something else. I mean seriously, we're

all going to die. For me, I'm actually not worried about the dying

part at all. It's the quality of life before I die that concerns me.

Here's a couple more links out of many more, I'm sure. It's worth

researching. You've researched everything else.

http://www.bcm.edu/oto/grand/120398.html

http://www.smw.ch/docs/pdf200x/2004/01/smw-10456.PDF

I'm not 100% sure, but I think people dx'd with IH have small shunts

inserted to relieve the excess fluid if the underlying infectious

(or other) cause cannot be treated. That could make a huge

improvement in your quality of life. Read those boards. I'm sure

you'll learn lots.

For me, the Benicar along with this recent sinus surgery have

effectively functioned as a shunt, reducing pressure in my head,

which makes a big difference in my quality of life. It's impacted

every symptom except my fatigue. Will have to give the sinus surgery

more recovery time and see if that's going to lift now too or if

I've still got to deal with remaining infection either in my sinuses

or jaw (or who knows where).

penny

p.s.

>

> OK, everybody is telling me my headches are going to kill me if I

don't DO SOMETHING, but what? No way I will let anybody perform a

spinal tap on me, my ID doc knows I get these monster headaches, I

don't know what we would learn from a spinal tap that we don't

already suspect. I know I have some form of encephalitis.

>

> Thanks everybody for your concern but now I'm even more freaked

out:) In fact I wasn't before, I was just writing about my headaches

as a BTW type comment. Can't afford to get freaked out. No good!

>

[Guest guest]

All this sinus talk is making me really nervous because, although I

never had a sinus problem before, within the last few weeks I

definitely feel something on my left side. Could I be growing fungus

there because of being on antibiotics?

- Kate