Lyme and sleep

April 5, 2003

Hi folks it is me again.

I sleep very well at night and usually do not sleep during the day unless I

have overdone it.

When I was still functioning in the world, I did have times when I had a

great deal of trouble sleeping from 1984 until I came down with this in

October 2001.

Now, I am usually fine unless I have a doctors appointment. Then I have

trouble sleeping, but it is from anxiety. I have grown to dislike having to

go see a doc I do not know because of the way the think so little of what I

am going through.

I also use to get migraines and haven't seen this hit. I found a cure! Don't

know what it is yet. HA!

Just checking to see if others are sleeping fine too.

April 5, 2003

,

I learn something new everyday. HA!

April 5, 2003

Got a kick out of your post at the end of HA! It means headache in medical

short hand.

Re: [ ] Lyme and Sleep

> Hi folks it is me again.

>

> I sleep very well at night and usually do not sleep during the day unless

I

> have overdone it.

>

> When I was still functioning in the world, I did have times when I had a

> great deal of trouble sleeping from 1984 until I came down with this in

> October 2001.

>

> Now, I am usually fine unless I have a doctors appointment. Then I have

> trouble sleeping, but it is from anxiety. I have grown to dislike having

to

> go see a doc I do not know because of the way the think so little of what

I

> am going through.

>

> I also use to get migraines and haven't seen this hit. I found a cure!

Don't

> know what it is yet. HA!

>

> Just checking to see if others are sleeping fine too.

>

June 25, 2004

Glad to hear you are doing so well, and that you can take ceftin. I am one of

the unlucky one that is allergic to rocphine, ceftin, penicillin. I have bad

MS/neuro lyme problems, I can't take the best meds that work on the brain, so my

progress has not been as good as others.

I just finished the HBOT protocol in hopes it will do so good for my brain. It

was not a easy treatment (40 dives together) It was very intense.

eric_s11050 <eric_s11050@...> wrote:

lyme disease appears to start with sleep problems, I think that over

the years,sleeping was the most effected part of lyme, I do believe

now that lyme spreads while you sleep and it makes sense because your

brain shuts down. also the lyme is centered around the brain and it

takes years to erradicate it from the brain , also the inflamation

takes years to go away and for repair of the brain and nervous system

to start. anybody on this forum that thinks they can get rid of lyme

without antibiotics is and I mean very high dose for long term is

kidding themselves.it takes years to remove the lyme on high dose

antibiotics. dont be a fool!! its in your nervous tissue and not the

blood, it takes time.

I here alot of things about alternative meds and there all bullshit!!

rife=quackery hbot=quackery silver=quackery all homeopathic=quackery

the key here is we need antibiotics and the one that works for me is

ceftin at a high dose. I hope that all of you continue and get better

with a good llmd at your side.

ps im am fortunate to be dr burrascano's last patient and he is the

best there is. thanks to him im getting better!

eric

Questions and/or comments can be directed to the list owner at

-Owner

June 25, 2004

eric states:

<<I here alot of things about alternative meds and there all bullshit!! <<

<<<<the key here is we need antibiotics and the one that works for me is

ceftin at a high dose.>>>>>>

You are lucky you found an antibiotic that worked for you.

I was lucky I found one to work for me too......and it wasn't

ceftin.......and I beat lyme twice.

Just as certain abx work for certain people and kills certain strains of

this bacteria....the same goes for alternative medicine.........what works

for one may not work for someone else. Don't be so narrow

minded..........There will come a time in your life, when traditional

medicine doesn't work for you........and let me tell you.......YOU will be

out looking for anything that will help you!! Do a little research, it's

out there.......everything from hydrogen peroxide drips, chelation

therapy........to acupuncture.........to herbs........etc. The list is

endless.

I have a sleep disorder (caused by the lyme) I no longer have

lyme........and it has been years now since getting rid of it.

I have been on every drug thinkable to help with this disorder.

Nothing works for any length of time. I have tried just about every

alternative treatment as well.........nothing works for any length of

time.....the best results were from acupuncture..... I have had CHRONIC

sleep deprivation since 1995. We are not talking about a bad night of

sleep........I can't stand it when someone starts complaining about how they

can't function, because they didn't sleep well............TRY YEARS of not

sleeping well.

I am now trying Neurofeedback........there is research.....that has proven

how effective it is for ADD, seizures, and some other problems. There

aren't any current studies that I am aware of where it has helped with

sleep. But, when thinking about my sleep disorder, it makes sense, that

there is brainwave dysfunction........and perhaps training some brainwaves

to change their pattern.......may in fact help me sleep.

Many look at this as alternative therapy.........it really isn't.........and

eventually it will be approved and covered by insurances.......in fact some

types of neurofeedback is covered now. Perhaps everything that hasn't been

FDA approved, was once considered alternative.........maybe as we see more

studies done that can prove the efficacy of some of these

treatments......they won't be called alternative any more.......but a

standard treatment for a specific problem. Look at what chelation has

done for many people.......

Think outside the box ...........

Conniek nwnj

June 25, 2004

Alternative therapies have worked pretty well for me and I had a

pretty bad case of lyme...

Connie, have you tried magnesium for your sleep disorder? By that I

mean IM or IV magnesium...not oral. It is very helpful, I think. For

me, anyway. ALso have you had your neurotransmitters tested (two

companies that do it are neuroresearch and neuroscience.inc, you can

find them on the web, they test you and then suggest amino acid

precursors in specific formulas.). My nt's were fairly normal but

it's something to get checked out as if they're off, and are

corrected, your sleep may normalize. Also, anything that can shift

you from a sympathetic (wired/tired) to a parasympathetic state is

useful for sleep. I use hbot for that but it's not an affordable

choice for many people.

What also might help if you're not overly sensitive to them are high

quality essential oils (YOung Living or better): blue chamomile is

soporofic, so is lavender to some extent.

> eric states:

> <<I here alot of things about alternative meds and there all

bullshit!! <<

> <<<<the key here is we need antibiotics and the one that works for

me is

> ceftin at a high dose.>>>>>>

>

> You are lucky you found an antibiotic that worked for you.

> I was lucky I found one to work for me too......and it wasn't

> ceftin.......and I beat lyme twice.

>

> Just as certain abx work for certain people and kills certain

strains of

> this bacteria....the same goes for alternative

medicine.........what works

> for one may not work for someone else. Don't be so narrow

> minded..........There will come a time in your life, when

traditional

> medicine doesn't work for you........and let me tell you.......YOU

will be

> out looking for anything that will help you!! Do a little

research, it's

> out there.......everything from hydrogen peroxide drips, chelation

> therapy........to acupuncture.........to herbs........etc. The

list is

> endless.

>

> I have a sleep disorder (caused by the lyme) I no longer have

> lyme........and it has been years now since getting rid of it.

> I have been on every drug thinkable to help with this disorder.

> Nothing works for any length of time. I have tried just about

every

> alternative treatment as well.........nothing works for any length

of

> time.....the best results were from acupuncture..... I have had

CHRONIC

> sleep deprivation since 1995. We are not talking about a bad night

of

> sleep........I can't stand it when someone starts complaining about

how they

> can't function, because they didn't sleep well............TRY YEARS

of not

> sleeping well.

>

> I am now trying Neurofeedback........there is research.....that has

proven

> how effective it is for ADD, seizures, and some other problems.

There

> aren't any current studies that I am aware of where it has helped

with

> sleep. But, when thinking about my sleep disorder, it makes

sense, that

> there is brainwave dysfunction........and perhaps training some

brainwaves

> to change their pattern.......may in fact help me sleep.

>

> Many look at this as alternative therapy.........it really

isn't.........and

> eventually it will be approved and covered by insurances.......in

fact some

> types of neurofeedback is covered now. Perhaps everything that

hasn't been

> FDA approved, was once considered alternative.........maybe as we

> studies done that can prove the efficacy of some of these

> treatments......they won't be called alternative any more.......but

a

> standard treatment for a specific problem. Look at what

chelation has

> done for many people.......

>

> Think outside the box ...........

> Conniek nwnj

June 25, 2004

Hi my name is eve. i am using homeopathic medications, but only to help the

symptoms, not kill the disease. I am being refused antibiotics because i can't

afford an llmd. these meds from the natropath got me off neurontin and took away

all its horrific side effects. since i am not on antibiotics to kill the disease

i have to have something to help the pain...I just thought that you should hear

that homeopathics do have a reason..thanx eve

June 25, 2004

i would if the doctors would give it to me. they refuse say I don't need it and

since i can't work I have no income, so therefore cannot get an llmd, can't pay

for it..eve

June 26, 2004

>

> Glad to hear you are doing so well, and that you can take ceftin.

I am one of the unlucky one that is allergic to rocphine, ceftin,

penicillin. I have bad MS/neuro lyme problems, I can't take the best

meds that work on the brain, so my progress has not been as good as

others.

> I just finished the HBOT protocol in hopes it will do so good for

my brain. It was not a easy treatment (40 dives together) It was

very intense.

>

, as an HBOT veteran (one who did 20, then 18 months later, 40

dives--over a period of 2 months--in clinics at 2.4 ata) I can say

that it helps but if you don't keep it up it is not so likely you

will retain the gains. I also am not convinced that higher pressures

are that significant or even necessary and indeed they can be

difficult to go through as a treatment. If it's clinic HBO that you

want to do, I'd recommend going back relatively soon for another 40,

and rather than doing 2 a day (which is kind of an arbitrary

recommendation), do one a day so you can stretch that 40 over 2

months. The longer the time frame the better. I do hbo at home at

mild pressures and by the end of July it will be nearly a year. I do

it about twice a week. It has been very slow steady improvement.

Perhaps a good analogy would be someone who goes on IV rocephin for a

month and then goes off, as opposed to someone who takes doxycycline

or some other antibiotic in modest doses for several years. In many

cases, the latter person could see slow steady improvement. Obviously

some don't take this viewpoint, or think very high doses of orals or

IV is the only thing that helps. It is somewhat individual. But in

the case of HBO, I believe longer time frames are more important than

the high pressures or twice a day, and that slow and steady wins the

race.

June 26, 2004

eric_s11050 wrote:

> lyme disease appears to start with sleep problems, I think that over

> the years,sleeping was the most effected part of lyme, I do believe

> now that lyme spreads while you sleep and it makes sense because your

> brain shuts down.

Mine started with severe neuromuscular problems and paralysis. Sleep wasn't

affected until 4 years later. Then again, we're all different....

> I here alot of things about alternative meds and there all bullshit!!

> rife=quackery hbot=quackery silver=quackery all homeopathic=quackery

A very narrow-minded comment. I am treating with alternative meds for the

last 9 months and have had the best results in 28 years with palliative

care. Finally getting somewhere. Over 80% improvement in mobility, energy,

mood... Now my DVM friend who treated her own Lb with Ledum 1M is putting me

on the same protocol. She is Lyme free. Hope I get the same result....

> the key here is we need antibiotics and the one that works for me is

> ceftin at a high dose. I hope that all of you continue and get better

> with a good llmd at your side.

Doxycycline worked well for me for the last 6 months. I stopped 4 days ago

to give my body a break and the horrendous neuralgia returned within 48

hours. Buggered if I'm going to spend the rest of my life on abx. There must

be a better way.

> ps im am fortunate to be dr burrascano's last patient and he is the

> best there is. thanks to him im getting better!

> eric

Good luck....

Kezzi. . .

June 26, 2004

eric schulman wrote:

> get back on orals at high dose. you need to kill the disease.

> eric

> ps oral ceftin worked better then iv rocephin

For you maybe.... How qualified are you to speak for others? We are all

different with co-infection, overlapping disease/syndromes etc... Whilst I

understand your enthusiasm your tone leaves a little to be desired...

Sincerely,

Kezzi. . .

June 26, 2004

<<eric

ps oral ceftin worked better then iv rocephin>>>

For you it worked better...............IV Rocephin killed off the lyme for

me.........

Conniek nwnj

June 26, 2004

Jill,

I have tried Magnesium IV.......and also have had my neurotransmitters

tested by Neuroscience..........they were off.......but they have not

changed after months of IV vitamin and mineral treatment.

I have tried the essential oil......lavender......without any success.

Thanks for the suggestions...........I've tried so many things in my quest

to get a good nights sleep.

I'm hoping the neurofeedback works for me..........if it doesn't I don't

really know what I will do.

Conniek nwnj

June 26, 2004

Hmmm...

Have you tried sleeping pills?

How about branch-chain amino acids? Sometimes they help with sleep.

I think neurofeedback is a *very* useful modality though I don't know

if it's been used for sleep.

If your nt's have been corrected, and magnesium hasn't helped, I'm

stumped. If you live in New Jersey, and neurofeedback doesn't work, I

think there is a portable hyperbaric chamber in NJ that costs around

$50/session. That is very helpful for returning you to a

parasympathetic state, which is necessary for good sleep, I think.

Perhaps your body needs to be retrained. ANother thought is testing

your cortisol levels, to be sure they aren't reversed, keeping you up

at night.

> Jill,

> I have tried Magnesium IV.......and also have had my

neurotransmitters

> tested by Neuroscience..........they were off.......but they have

not

> changed after months of IV vitamin and mineral treatment.

> I have tried the essential oil......lavender......without any

success.

> Thanks for the suggestions...........I've tried so many things in

my quest

> to get a good nights sleep.

> I'm hoping the neurofeedback works for me..........if it doesn't I

don't

> really know what I will do.

> Conniek nwnj

June 26, 2004

Thanks ,

I had a sleep study that showed decreased delta waves, and significant

awakenings directly related to leg movements.

Hence a dx of the sleep disorder " Period Limb Movement Syndrome. " A

neurological based disorder........similar to Restless leg syndrome, but yet

different.

I have been on many meds similar to those taken by people suffering from

Parkinson's disease and seizures. Unfortunately they causes more movements

(including my arms)....or had no effect at all.

Thanks for the info though.

I keep on searching,

Conniek nwnj

June 26, 2004

Thanks for the input, I have already had one maintance dive and will go back

this week for another, I plan on going once a week til ........ I feel like it

got me off of my death bed, and now have some type of foundation to build on.

I have looked into the mild hyperbarics, but this place opened up here in

Houston, and I was their first patient, that's how I will be able to do reg.

maintance dives.

Take care

jill1313 <jenbooks13@...> wrote: