Re: PWCs idiosyncratic reaction to benadryl & OTC sleeping pills

[Guest guest]

Penny mentioned below that narcotics & sleeping pills have a contrary

affect & keep her awake. I've always had that same reaction. Docs

will say take Benadryl to relax or sleep -- it gives me jumpy legs &

keeps my brain on high alert. Same thing any time I've tried a pain

med like hydrocodone or an over-the-counter sleeping aid.

How many of you have that reaction to such drugs? And how many have

the normal expected reaction to the above drugs?

I've always wondered if this idiosyncratic CNS reaction to such drugs

somehow is part of the mechanism that causes me to have severe chronic

fatigue in response to an infection.

Tempe

(Background: I got lyme from a tick bite in 1990, and was out of

commission from July 1991 - Spring 1992, took only tetracycline and

biaxin (after it became approved) through 1993. At that point I was

symptom-free for 10 years, until bitten by a lonestar tick on June 5

2003. I sent the tick to a lab and " no borrelia spirochetes were

found, " but I gradually developed parathesias, then meningeo-

encephalitis, light & sound sensitivity, brain fog, tremors, etc,

anyway. Dr C in MO concludes it isn't a new infection, but caused a

relapse of the 1990 case.)

> I wonder if there's some similar mechanism to explain why narcotics

> will, 7 times out of 10, wire me up, rather than put me to sleep.

> Actually, they'll often knock me out for an hour or two, then I wake

> up and can't go back sleep. Usually I feel relaxed but can't sleep,

> but sometimes I actually feel wired and very antsy. These are from

> drugs that put other " normal " people right out. Of course, it's

> probably no surprise that we PWC, who, even though we are exhausted

> can't seem to sleep normally, would get wired on sleeping pills. :-)

>

> And of course, I still get to enjoy the next day sleeping pill

> hangover.

>

> I suppose this is why Benicar has been so miraculous for me. No drug

> hangover. Just pain and anxiety relief and better sleep.

>

> penny

[Guest guest]

Im normal with diphenhydramine (Benadryl). Pretty refractory to

zolipidem (Ambien). It stones the hell out of me but didnt improve my

wake-ups at all back when I had 7-15 per night. At that time

diphenhydramine didnt exactly knock me out but it was helpful,

especially if I'd gone a couple days without using it.

Amongst sleepifying ADs, mirtazapine was helpful, but less so after a

couple days. But when I was really super sick it made me sicker so I

couldnt take it. Took a little amitriptyline once in those days, didnt

help, made me insane.

>

> Penny mentioned below that narcotics & sleeping pills have a contrary

> affect & keep her awake. I've always had that same reaction. Docs

> will say take Benadryl to relax or sleep -- it gives me jumpy legs &

> keeps my brain on high alert. Same thing any time I've tried a pain

> med like hydrocodone or an over-the-counter sleeping aid.

>

> How many of you have that reaction to such drugs? And how many have

> the normal expected reaction to the above drugs?

>

> I've always wondered if this idiosyncratic CNS reaction to such drugs

> somehow is part of the mechanism that causes me to have severe chronic

> fatigue in response to an infection.

>

> Tempe

>

> (Background: I got lyme from a tick bite in 1990, and was out of

> commission from July 1991 - Spring 1992, took only tetracycline and

> biaxin (after it became approved) through 1993. At that point I was

> symptom-free for 10 years, until bitten by a lonestar tick on June 5

> 2003. I sent the tick to a lab and " no borrelia spirochetes were

> found, " but I gradually developed parathesias, then meningeo-

> encephalitis, light & sound sensitivity, brain fog, tremors, etc,

> anyway. Dr C in MO concludes it isn't a new infection, but caused a

> relapse of the 1990 case.)

[Guest guest]

Good question. Does this idiosyncratic reaction somehow tie into our

excessive fatigue reaction?

I'm the same way with hydrocodone. Makes me jumpy as hell. Antsy,

jumpy legs, while it mellows others out. Same with benadryl type

drugs. Not every time, but definitely if I take them a couple of

times in a row. I noticed this when I was in my twenties though. If

the cold or allergy medication said " may cause excitability in small

children " , then I knew I was in trouble. :-)

It would be nice to respond normally to things. Doctors wouldn't

automatically assume you're a head case.

Maybe we should run a poll on this question of idiosyncratic

reactions to drugs?

But I need to go have a coughing fit now. :-(

penny

>

> Penny mentioned below that narcotics & sleeping pills have a

contrary

> affect & keep her awake. I've always had that same reaction.

Docs

> will say take Benadryl to relax or sleep -- it gives me jumpy legs

&

> keeps my brain on high alert. Same thing any time I've tried a

pain

> med like hydrocodone or an over-the-counter sleeping aid.

>

> How many of you have that reaction to such drugs? And how many

have

> the normal expected reaction to the above drugs?

>

> I've always wondered if this idiosyncratic CNS reaction to such

drugs

> somehow is part of the mechanism that causes me to have severe

chronic

> fatigue in response to an infection.

>

> Tempe

>

> (Background: I got lyme from a tick bite in 1990, and was out of

> commission from July 1991 - Spring 1992, took only tetracycline

and

> biaxin (after it became approved) through 1993. At that point I

was

> symptom-free for 10 years, until bitten by a lonestar tick on June

5

> 2003. I sent the tick to a lab and " no borrelia spirochetes were

> found, " but I gradually developed parathesias, then meningeo-

> encephalitis, light & sound sensitivity, brain fog, tremors, etc,

> anyway. Dr C in MO concludes it isn't a new infection, but caused

a

> relapse of the 1990 case.)

>

>

>

>

> > I wonder if there's some similar mechanism to explain why

narcotics

> > will, 7 times out of 10, wire me up, rather than put me to

sleep.

> > Actually, they'll often knock me out for an hour or two, then I

wake

> > up and can't go back sleep. Usually I feel relaxed but can't

sleep,

> > but sometimes I actually feel wired and very antsy. These are

from

> > drugs that put other " normal " people right out. Of course, it's

> > probably no surprise that we PWC, who, even though we are

exhausted

> > can't seem to sleep normally, would get wired on sleeping

pills. :-)

> >

> > And of course, I still get to enjoy the next day sleeping pill

> > hangover.

> >

> > I suppose this is why Benicar has been so miraculous for me. No

drug

> > hangover. Just pain and anxiety relief and better sleep.

> >

> > penny

[Guest guest]

>

> I've been averaging 3 hours of sleep a night for most of the last

> three years. A friend was so sure Benadryl would help she sent me a

> big box of it. I had the same bad reaction that Marie and others

> have mentioned. I only tried Ambien once, and again my reaction was

> identical to Marie's.

I couldnt' stand benadryl. Trytophan makes me irritable. Melatonin

spikes my hormones. I take temezapem. I've been taking too much on

some nights for months because it helps quiet down my bladder. But it

leaves me groggy and flat and weird unless I am under a certain

amount. I have to be more disciplined, as my LED device does help me

sleep. Last night I fell asleep using the device but woke around

12;30 a.m. and my earplugs had both fallen out. I thought that was

weird so I put in a new pair and went back to sleep with temezapem

which I should not have, probably, and when I woke up again one of

the earplugs had also fallen out. I wondered if I'd taken them out in

my sleep. I need them and white noise because NYC even in my somewhat

bucolic area of the city is so friggin noisy there are sirens and

horns and car alarms at any hour through the night. I am a light

sleeper and these noises will wake me up.

Anyway when I take less of the pill but still some, and only once

after my own sleep of 3-5 hours, I do okay. So I have to scale back

down.

All this is to say however that I have researched and written about

sleep and 3 hours a night is enough toc ause you many immune

problems. By sleep deprivign rats they have been able to induce

mysterious immune disorders that KILL them. Sleep deprived they eat

more and still lose weight, their hair falls out, they get infections

that can't be combatted with antibiotics.

Therefore I recommend you try some other sleeping aids. Temezapem is

older, its in the valium family, all those are fairly tried and true.

They *do* make you groggy if you take too much. And not just groggy,

I feel flat...like my brain isn't sparking with connections the way I

usually like.

Anyway, I think correcting your sleep as best you can and

experimenting with all the drugs lymies use, from amitryptline to

trazodone to temezapem to klonipin (very strong)...whatever is

necessary. I don't see how anybody can get well on that little sleep.

Immune system won't function properly.

Good luck...

Sue's daughter is coming tomorrow and I suppose will report back to

you, though one half-session will not be so telling. I hope she does

a few over the coming week.

[Guest guest]

Jill (is it right to call you Jill? your email says 'Jen') - I am SO

glad you are on the board! and on the ball, may I add!

Yes, I know very well, because I now have years of experience, how

sleep deprivation magnifies the problem. Why else have the bugs

evolved in a way that interferes with sleep, unless it helps them to

further compromise the IS? Nerve toxin from the Pentagon is an act

of malice, but nerve toxin from a bug is an act of self/species

preservation.

(That the Pentagon and a bug like this might collaborate hardly

seems surprising - who is using whom would be an interesting

question for a biologist to consider).

Indeed, it might well be that the pain and neuro-excitation are

entirely secondary to their primary purpose, which is to deprive the

host of rest in order to derail his immune response.

Evolution acts in this case, and in many others, as if it were being

guided by the hand of the Marquis De Sade.

Who knows, perhaps it is...but I think it is easy to get paranoid

when the effects are this viciously cruel, and calculated to serve

the biological imperatives of a lowly brood of worms, rather than my

own.

This is the MEANEST, NASTIEST DAMN DISEASE I have ever encountered,

and let me tell you, it pisses Pope scha off royally!

Now - what sleeping meds have I tried? You didn't ask, but

everything you mention is on the list. I feel much worse the next

day when I use diazepams at night. In fact, they foster the one

symptom which I tolerate even less well that mind-rending pain: air

hunger.

I have this anyway - my autonomic nervous system is screwed up when

it comes to respiration. See the previous post from me re:

respective roles of GABA and glutamate, the MAIN inhibitory and

excitory neurotransmitters.

The drugs you mention - diazepams like yours or klonopin - greatly

increase the level of GABA. For a while, this will cancel out the

increased excitory state produced by excess glutamate.

Think of it as a balance problem. What if the excitory effect is

reduced due to some normal fluctuation? The same amount of GABA that

was calming a minute ago will be stupefying now. There is evidence

with me that the most severe neurological agitation occurs at night.

As a result, what is calming by night is coma-inducing by day.

Is that clear? I ask because I get the sense you think I'm

malingering, not trying things to help myself. That is really not

the case, my friend. I work harder at getting well than anyone I

know. I would rather work " smarter " but there are limits to what one

can do when the doctors are not all that swift. When it comes to

diseases like mine, even the brightest of them is pretty well

flummoxed.

I am telling them what to do, and we're talking about very

knowledgable, experienced specialists. I tell them, " hell no, don't

even think about that, you ninny! " or " damn it, how many times do I

have to suggest this before you LISTEN? "

OK, I'm more polite than that, but less so as time goes on. I don't

really have time to make a fetish out of courtesy.

Unfortunately, there is NO neuro drug, not ONE, that successfully

modulates the glial protein needed to take up all that glutamate and

SAFELY dispose of it (think radioactive waste).

That's what makes Matt's Rocephin finding so exciting to me -

Rocephin is actually doing something that no other drug I'm aware of

is able to, without causing horrifying side effects.

The problem with glutamate receptor blockers is that glutamate

receptors are ubiquitous throughout the body and serve a huge range

of very distinct functions, some of which are absolutely necessary

to maintain life.

Neurontin is supposed to partly inhibit glutamate receptors, but

does a very uneven job of it because of the vagueries of how the

drug is metabolized. I took nearly three grams of neurontin a day

for several months. It had absolutely no effect, none, I stopped

cold turkey and felt no immediate or subsequent change.

I might have had to double that 2700mg, or triple it, not because of

the nervous system but because one or another of the metabolic steps

required to utilize the drug doesn't 'take' in me.

Neurontin is 'benign', but if it were more effective, it would

probably be as neurotoxic as the rest.

There's a pill called MK801 that many pain doctors (including mine)

believe could end nerve pain for most patients - but it is so

neurotoxic human use is out of the question.

The only thing I know of that will really help me to sleep is having

EXACTLY the right night-time dose of morphine. It should be higher

than the daytime dose, but not so high that it's inhibitory effect

on respiration becomes a problem.

Probably the maximum dose that does NOT cause respiration problems

in me is best. The most I've ever taken at once is 60mg (my current

total daily dose), and I had no respiration problem. It didn't even

make that big a dent in my pain, though it did help. In general,

morphine at the doses I've tried is not sedating, nor does it foster

any kind of 'buzz', pleasurable or not.

I can take three times my current dose of morphine and not have

respiratory distress, but I get it almost immediately if I take a

benzodiazepam.

Ain't life grand?

Now I have to educate a pain specialist who thinks it would be

brilliant to put me on methadone, a painkiller that is stronger than

morphine and has some weak glutamate receptor blocking effect.

Unfortunately, anything that blocks glutamate uptake increases the

deposits of extracellular glutamate surrounding the nerve roots,

causing more cognitive slowing and fatigue. Morphine improves my

energy and alertness, by reducing pain. Methadone is likely to

reduce pain at the expense of what energy and alertness I have.

This pain doctor has a resume that would sweep you off your feet,

but does he understand what I'm saying here? No.

That is why I have to run myself ragged trying to anticipate and

correct harebrained MD attitudes. Not to insure I get better, just

to make sure I don't get made much worse through some horrendous

error or omission.

Does this need for hyper-vigilance help one to relax, to emphasize

the calming aspects of the voluntary nervous system? No mam, it does

not.

I sometimes think that a doctor killing spree might buy me a week or

so of good sleep, but instead I take Gabitril, which rather than

increasing the total amount of GABA in my brain slows the rate at

which it is taken up by a very specific GABA receptor, GAT1.

GAT1 is the receptor which causes nerve cells to carry an eccentric

(and pain/fear-inducing) charge in people who are going through

opiate withdrawls.

And hey, guess what? It turns out that opiate withdrawl is almost a

perfect model for nerve pain! So when I first reported this pain to

physicians, explaining it had kept me up for nights, and told them

to prescribe me opioid medication, I was actually telling them

exactly the right thing to do.

My nervous system was jonesing. Gabitril helps address that. The

fact that I still have pain, despite taking Gabitril and time-

release morphine sulfate, is due to how much I started with, and how

low the treatment dosages I've been given were kept.

This drug should probably be increased. It's dangerous beyond a

certain point, not intrinsically but because they don't have studies

to predict the effect in a patient as severely f'd up as I am.

I tolerate Gabitril very well though - so apparent side effects at

all. My LLMD refused to increase the dose on three different

occasions when I requested it. My pain doctor suggested it without

me having to say anything, a big kudo for that, but getting him to

write the order will be something else. Perhaps if I can talk the

poor confused man out of methadone, he'll have more mental space to

consider sane alternatives.

OK, I know, more information than anyone asked for, but there you

have it.

Da Pope is pooped.

Scha

> >

> > I've been averaging 3 hours of sleep a night for most of the

last

> > three years. A friend was so sure Benadryl would help she sent

me a

> > big box of it. I had the same bad reaction that Marie and others

> > have mentioned. I only tried Ambien once, and again my reaction

was

> > identical to Marie's.

>

> I couldnt' stand benadryl. Trytophan makes me irritable. Melatonin

> spikes my hormones. I take temezapem. I've been taking too much on

> some nights for months because it helps quiet down my bladder. But

it

> leaves me groggy and flat and weird unless I am under a certain

> amount. I have to be more disciplined, as my LED device does help

me

> sleep. Last night I fell asleep using the device but woke around

> 12;30 a.m. and my earplugs had both fallen out. I thought that was

> weird so I put in a new pair and went back to sleep with temezapem

> which I should not have, probably, and when I woke up again one of

> the earplugs had also fallen out. I wondered if I'd taken them out

in

> my sleep. I need them and white noise because NYC even in my

somewhat

> bucolic area of the city is so friggin noisy there are sirens and

> horns and car alarms at any hour through the night. I am a light

> sleeper and these noises will wake me up.

>

> Anyway when I take less of the pill but still some, and only once

> after my own sleep of 3-5 hours, I do okay. So I have to scale

back

> down.

>

> All this is to say however that I have researched and written

about

> sleep and 3 hours a night is enough toc ause you many immune

> problems. By sleep deprivign rats they have been able to induce

> mysterious immune disorders that KILL them. Sleep deprived they

eat

> more and still lose weight, their hair falls out, they get

infections

> that can't be combatted with antibiotics.

>

> Therefore I recommend you try some other sleeping aids. Temezapem

is

> older, its in the valium family, all those are fairly tried and

true.

> They *do* make you groggy if you take too much. And not just

groggy,

> I feel flat...like my brain isn't sparking with connections the

way I

> usually like.

>

> Anyway, I think correcting your sleep as best you can and

> experimenting with all the drugs lymies use, from amitryptline to

> trazodone to temezapem to klonipin (very strong)...whatever is

> necessary. I don't see how anybody can get well on that little

sleep.

> Immune system won't function properly.

>

> Good luck...

> Sue's daughter is coming tomorrow and I suppose will report back

to

> you, though one half-session will not be so telling. I hope she

does

> a few over the coming week.

[Guest guest]

Hi .

I don't think you're not working hard, so please don't ever think

that. I know that feeling--of despair--one is trying so hard and

others don't see it. I was talking to the guy from whom I got my

chamber, Lance, who built his own chamber in 1994 when he was

practically dying of lyme, out of a butane tank and a submarine hatch

etc. Yeah, that was how hard he tried and how much he wanted to live.

We all do. Anyway, he now uses a portable. He pretty much recovered

using his home built chamber and saunas. But anyway, people ask him

and his wife, where are the kids. He said, 'I tell them I'm basically

grateful to be alive.' I said, 'Yeah, you get so sick you're going to

die and then you do everything possible to save yourself and you

manage to do it, and they don't believe you were ever sick enough to

die, they just look at you and say, 'So where are the kids?' " We

laughed about it.

I also know multisystemic infection can be hard for doctors to treat

as they don't get it.

I think your system badly needs support rather than drugs. For now.

That's why I kept emphasizing the portable chambers. Everything has

gone kaflooey in your system. It needs help and support. That means,

rest. The portable chamber will shift you back into a parasympathetic

state. It will allow your body to rest while getting pressure and

oxygen. It will give your cells more fuel. IIt will reduce pain.

YOu'd need to start slow/low (the first session, maybe only 30minutes

and maybe just 1.1 or 1.2 pressure to see how you do). It can be

powerful and you dont wnat a major killoff and herx.

If you can't take benzos, how about something like trazodone--I've

heard other lymies say it works. I am not good with this stuff, I use

my little old fashioned drug and in fact as I said I'm using too much

now, but I don't know a lot about sleeping potions. I just know you

cannot get well on 3 hours sleep, you can only get sicker. Even a

healthy person with no infections would get sick. When is the body

supposed to repair itself?

I think you should make sleep a priority. Start complaining loudly to

your doctor/s and insist they work with you medicinally until you are

getting 6-8 hours a night of sleep.

Now, you didn't know, but I have taken you under my wing. I don't

like the hell you're in. I like your photos (artistic ability) and

your own spiritual thinking so I am not going to let the dark forces

keep you where you are. See? You can relax because I'm going to bug

you until we find whatever makes you feel better.

Another thing that really helps me, and I'm not sure what diagnoses

you've been given, but insuranc emight cover it, is IVIG. But we can

talk about that a little later.

ALso--what about magnesium? What amount of that is in your diet? It's

a good pain quencher in lyme. I need it IV, I find that most helpful.

[Guest guest]

, I'm about to go to sleep but doing a little thinking, here is

what I recommend:

1) IV magnesium, and a prescription (per Cheney's rec) for at home

magnesium/taurine you can self inject into your butt or thigh. YOu

can do it with magnesium sulfate alone but that can hurt a bit.

Here's what I get in my IV; 6 cc's of VItamin C, 2.5 cc of magnesium

sulfate (but I'd recommend 3 for you), 1 cc of calcium (just to

balance the magnesium a little, but I don't want much), 1 of b5 and 1

of b6. Then I add in a glutathione chaser at the end.

The home IM injections are cheap but you need some IV first.

See if that affects your pain over time, and it should also improve

your sleep

2) Hyperbaric oxygen in a portable chamber twice a week.

3) Get off the ARB. Unless your bp is going to kill you let's figure

out another way to lower it. Maybe there are herbs etc. YOu may be

right its affecting your ability to process drugs. You may also be a

fast metabolizer and need more of any drug to wokr

4) Rocephin is NOT nontoxic, it can ruin your gallbladder. There has

to be a better way to get rid of your pain than rocephin. And it

makes lyme go into cyst form and relapse worse when off it

5) Some kind of other med to help you sleep as I said before. Maybe

trazodone. I don't know for sure what that is but I think its a

sedating antidepressant and is not at all in the GABA family that

gives you air hunger.

6) I think a lymie who had bad neuropathic pain was using an

ayurvedic remedy from Dr Gerson, I think it was lemon balm essential

oil? Try experimenting with essential oils from nature's gift (google

her). FOr pain and sleeplessness, try buying german chamomile (blue

chamomile), a good lavender, and maybe she has lemon balm. The former

two, mix together, put some on the skin under your nose (so it goes

to the brain), breathe it in, put some on painful areas.

7) Address fungal issues. YOu had a horrible dieoff headache from

diflucan. Consider starting with nystatin, then, in very tiny doses,

like just a smidge at first. See how you do.

I'm going to get back on nystatin shortly myself.

Of the above, I feel hyperbaric and magnesium, IV & IM are the most

improtant. The essential oils may seem silly to you but they are very

potent and a rather cheap experiment.

ANd the second most important is using any means necessary to get

yourself some sleep.

Okay, I'll wait till you respond to this post.

[Guest guest]

Jill, I'm honored by your desire to see me well!

Yes, I am familiar with all the possibilities you lay out here. Yes,

I am doing all I can to act on those items which I believe could be

helpful.

Is there more I can say, to put your mind at rest?

Your friend,

>

> , I'm about to go to sleep but doing a little thinking, here

is

> what I recommend:

>

> 1) IV magnesium, and a prescription (per Cheney's rec) for at home

> magnesium/taurine you can self inject into your butt or thigh. YOu

> can do it with magnesium sulfate alone but that can hurt a bit.

>

> Here's what I get in my IV; 6 cc's of VItamin C, 2.5 cc of

magnesium

> sulfate (but I'd recommend 3 for you), 1 cc of calcium (just to

> balance the magnesium a little, but I don't want much), 1 of b5

and 1

> of b6. Then I add in a glutathione chaser at the end.

>

> The home IM injections are cheap but you need some IV first.

>

> See if that affects your pain over time, and it should also

improve

> your sleep

>

> 2) Hyperbaric oxygen in a portable chamber twice a week.

>

> 3) Get off the ARB. Unless your bp is going to kill you let's

figure

> out another way to lower it. Maybe there are herbs etc. YOu may be

> right its affecting your ability to process drugs. You may also be

a

> fast metabolizer and need more of any drug to wokr

>

> 4) Rocephin is NOT nontoxic, it can ruin your gallbladder. There

has

> to be a better way to get rid of your pain than rocephin. And it

> makes lyme go into cyst form and relapse worse when off it

>

> 5) Some kind of other med to help you sleep as I said before.

Maybe

> trazodone. I don't know for sure what that is but I think its a

> sedating antidepressant and is not at all in the GABA family that

> gives you air hunger.

>

> 6) I think a lymie who had bad neuropathic pain was using an

> ayurvedic remedy from Dr Gerson, I think it was lemon balm

essential

> oil? Try experimenting with essential oils from nature's gift

(google

> her). FOr pain and sleeplessness, try buying german chamomile

(blue

> chamomile), a good lavender, and maybe she has lemon balm. The

former

> two, mix together, put some on the skin under your nose (so it

goes

> to the brain), breathe it in, put some on painful areas.

>

> 7) Address fungal issues. YOu had a horrible dieoff headache from

> diflucan. Consider starting with nystatin, then, in very tiny

doses,

> like just a smidge at first. See how you do.

>

> I'm going to get back on nystatin shortly myself.

>

> Of the above, I feel hyperbaric and magnesium, IV & IM are the most

> improtant. The essential oils may seem silly to you but they are

very

> potent and a rather cheap experiment.

>

> ANd the second most important is using any means necessary to get

> yourself some sleep.

>

> Okay, I'll wait till you respond to this post.

[Guest guest]

It's not that my mind is ill at ease about you it's that I think

you are not necessarily doing the right things. As you said, " the

things you believe will help. " But I want you to try a few other

things as I'm convinced they will help much more...

>

> Jill, I'm honored by your desire to see me well!

>

> Yes, I am familiar with all the possibilities you lay out here. Yes,

> I am doing all I can to act on those items which I believe could be

> helpful.

>

> Is there more I can say, to put your mind at rest?

>

> Your friend,

>

>

>

>

[Guest guest]

Well, then, I owe you a warning. Others have tried to make a

believer out of me. In return I tried to make them skeptics. I

remain unconvinced, they are having doubts.

The Unnameable Protocol's evangelical hordes have ceased to natter

at me, for their own peace of mind. The RIFE promoters met a similar

fate.

This is I & I, my home planet, and here the powers of my skepticism

are at their peak. Urgings, passionate endorsements, these things

wither in the air of I & I without ever reaching me.

I am impervious to everything but reasoned argument from a set of

accepted facts.

So if you are going to beat your head on that wall, get a helmet.

But better yet, get your facts and arguments in order. They are the

only thing that might win some hearing for your suggestions.

None of this is personal, dear Jill, it is simply how things are.

> >

> > Jill, I'm honored by your desire to see me well!

> >

> > Yes, I am familiar with all the possibilities you lay out here.

Yes,

> > I am doing all I can to act on those items which I believe could

be

> > helpful.

> >

> > Is there more I can say, to put your mind at rest?

> >

> > Your friend,

> >

> >

> >

> >

[Guest guest]

Well it depends if your reasoning is good or obstinate, whether I

will beat my head against it. I *could* give up on you if I think you

are not listening to reason (mine).

1) Marshal protocol--I never bothered with it and I thought it

sounded bad for lyme. Why? High dose antibiotics have trouble

quenching it, tell me why low dose antibiotics are going to do so?

Then add in an ARB and say that quenching an inflammatory pathway in

this case is okay--why, when cox-2's and TNF inhibitors all show us

that nature made inflammation for a reason, and if you stop the whole

pathway, you can get bad effects. Finally, I initially looked back at

a long ago study Trevor cited and of 9 patients half or so improved

on Vitamin D supplements and half got worse, or something like that.

So I asked hiim about it and he never had a good answer. And I've

always believed the literature on Vitamin D, that it was healthy and

so is the sun. Nature didn't make the sun and we didn't evolve on

this planet to live in caves. Maybe bats did but not us.

So I never wasted my time on that

2) Rife. IT works for some but not for me because of sensitivity to

the EMF's.

3) There is enough literature on hyperbaric that you can find on your

own, so I'm not going to go and find it and cite it all for you. It

is profoundly beneficial and supportive in most chronic illnesses. It

suppresses pathogens and boosts the immune function but as far as I

can tell does not bother fungi as they are facultative anaerobes. It

is not a cure for lyme so you need a home chamber imo. The deep

pressures are not curative either and I believe over the longterm

could lead to oxygen toxicity so the home chamber pressure is fine

and does what it needs to. YOur system is so kaflooey you need

something like this. It also cured my lymegraines, and Sue ('s

mom) mentioned today you have migraines. Two years into lyme I began

to get debilitating lymegraines keeping me in bed in agony for 24

hours at a time about 2x week, they are 98% gone (occasionally will

get one from herxheimer, as with the argentyn23 silver).

4) I'm not wrong about the sleep and you know it. Let me tell you

about one study done in Bern by Jan Born & his associates in 2003. It

was a pilot study where they took, I think 14 or 16 people or maybe

20, anyway, had never had heptatis B, and they vaccinated them all

against it, but they let half sleep and half not. The half who got

the vaccine in the evening and slept after...they tested them a month

later and they had DOUBLE THE AMOUNT OF ANTIBODIES as the nonsleep

group. Your immune system gets totally fu**ked if you donot get your

selep. Thus you definitely need to make that a priority and if drugs

are a necessary part of that, so be it. That should be your #1

priority. Remember, rats get infections that no antibiotics can treat

when they are sleep deprived.

5) Magneisum--it's a thought, its not an expensive experiment, could

even just do IM shots at home. I was trying to find other ways to

calm your pain. I think its worth it and won't interfere with

anything else even morphine

6) I don't like the ARBS. That's my opinion.

[Guest guest]

I believe my reasoning is good, in the sense that I am not

obstinate, only skeptical as one must be to avoid disaster.

I completely endorse the IV suggestions you make, all of them. I

have asked for these things, Jill! For months now, from my LLMD, and

she does not comply, because she fears my family's resources are

limited and must be focused on things that tackle the underlying

problem more effectively, like Rocephin.

I will be getting a picc line very soon. My neurologist is unhappy

this was not done sooner (validating my own view, but I do believe

there was a logic to building up to it, as well).

You can help me, Jill, by helping me to prepare the case for neuro /

LLMD to try these things. Neuro is very game to treat me with

anything that might help, and less concerned than LLMD about

conserving scare resources (she feels that we must try to give me

the same standard of care someone with less financial constraints

would receive, LLMD is more fatalistic).

Pain specialist also very into anything that might help. Jill, help

me by helping me make the case to neuro and pain specialist. You

don't have an obstacle in me, but you do have to join me in facing

the obstacles I face in terms of limited finances and how that

discourages doctors from being proactive.

I am very grateful to you, Jill, for your compassion and desire to

help, I am only trying to help you focus it in a way I can take real

advantage of.

Thank you so much, my friend.

>

> Well it depends if your reasoning is good or obstinate, whether I

> will beat my head against it. I *could* give up on you if I think

you

> are not listening to reason (mine).

>

> 1) Marshal protocol--I never bothered with it and I thought it

> sounded bad for lyme. Why? High dose antibiotics have trouble

> quenching it, tell me why low dose antibiotics are going to do so?

> Then add in an ARB and say that quenching an inflammatory pathway

in

> this case is okay--why, when cox-2's and TNF inhibitors all show

us

> that nature made inflammation for a reason, and if you stop the

whole

> pathway, you can get bad effects. Finally, I initially looked back

at

> a long ago study Trevor cited and of 9 patients half or so

improved

> on Vitamin D supplements and half got worse, or something like

that.

> So I asked hiim about it and he never had a good answer. And I've

> always believed the literature on Vitamin D, that it was healthy

and

> so is the sun. Nature didn't make the sun and we didn't evolve on

> this planet to live in caves. Maybe bats did but not us.

>

> So I never wasted my time on that

>

> 2) Rife. IT works for some but not for me because of sensitivity

to

> the EMF's.

>

> 3) There is enough literature on hyperbaric that you can find on

your

> own, so I'm not going to go and find it and cite it all for you.

It

> is profoundly beneficial and supportive in most chronic illnesses.

It

> suppresses pathogens and boosts the immune function but as far as

I

> can tell does not bother fungi as they are facultative anaerobes.

It

> is not a cure for lyme so you need a home chamber imo. The deep

> pressures are not curative either and I believe over the longterm

> could lead to oxygen toxicity so the home chamber pressure is fine

> and does what it needs to. YOur system is so kaflooey you need

> something like this. It also cured my lymegraines, and Sue

('s

> mom) mentioned today you have migraines. Two years into lyme I

began

> to get debilitating lymegraines keeping me in bed in agony for 24

> hours at a time about 2x week, they are 98% gone (occasionally

will

> get one from herxheimer, as with the argentyn23 silver).

>

> 4) I'm not wrong about the sleep and you know it. Let me tell you

> about one study done in Bern by Jan Born & his associates in 2003.

It

> was a pilot study where they took, I think 14 or 16 people or

maybe

> 20, anyway, had never had heptatis B, and they vaccinated them all

> against it, but they let half sleep and half not. The half who got

> the vaccine in the evening and slept after...they tested them a

month

> later and they had DOUBLE THE AMOUNT OF ANTIBODIES as the nonsleep

> group. Your immune system gets totally fu**ked if you donot get

your

> selep. Thus you definitely need to make that a priority and if

drugs

> are a necessary part of that, so be it. That should be your #1

> priority. Remember, rats get infections that no antibiotics can

treat

> when they are sleep deprived.

>

> 5) Magneisum--it's a thought, its not an expensive experiment,

could

> even just do IM shots at home. I was trying to find other ways to

> calm your pain. I think its worth it and won't interfere with

> anything else even morphine

>

> 6) I don't like the ARBS. That's my opinion.

[Guest guest]

and

> she does not comply, because she fears my family's resources are

> limited and must be focused on things that tackle the underlying

> problem more effectively, like Rocephin.

REmember in Gone with the WInd on the way home to Tara in the war,

she's beating the horse with a whip and it collapses?

How can a body that's only sleeping 3 hours a night, having seizures,

having horrible pain necessitating morphine every day, repair itself

when you add in another potent toxic drug like rocephin?

Not.

The horse needs to stop, the whip needs to stop, and rest and food

are necessary.

You need someone to get your sleep in order which will probably

require more meds. You also could benefit a lot from portable

hyperbaric oxygen, IM/IV magnesium (how costly is IM? VERY CHEAP),

maybe IVIG since you have obvious neuro problems the right person

should be able to get that covered on insurance. I do all these

things and I would probably be, otherwise, like Sue 's daughter

whom I met today and I sure hope the chamber helps her, I pray it

does.

I was headed in that direction. Now, I still suffer, but I am writing

books, articles, and can do some travel, socialize, etc. I have a

long way to go imo but I am not on disability and not bedridden and I

would be by now without all these things. The *one* drug I gave into

was temezapem, for the precise reason of #1 above, I was not getting

enough sleep since I got lyme.

Most doctors have specialties. If your LLMD is into antibiotics, then

that's what she's useful for. If your neuro is more open, then press

him for other stuff in that regard. Go onto lymenet and print out

that IVIG thread--he may be receptive to that.