Re: Severe Headaches? Wack LLMD? hmmm

[Guest guest]

She seems to be test happy

> though. Always wants blood always wants people to go for SPECT scans it's

> almost like everytime you walk through the door she wants to do another

test.

> Doesn't that seem strange?

> Anyways, my friend has severe headaches but like I said he's also on

BP

> meds. Well the other day she prescribed that new migrane med for him,

> Emetrex. The end result was he wound up in the ER and almost died from the

> reaction because it affected his heart.

My LLMD takes blood every 4 weeks to test the liver and other things. A

SPECT is good as it show actually bloodflow damage. If ins pays for it, go

for it.

I get severe headaches, the kind where a migraine would feel like heaven,

and I have heart probs caused by the Lyme. Since I have heart probs I am

alot further behind my tx, than someone without. I have to do tx very slow,

I dang sure dont need a 'cardio herx'. Different people react differently

with meds, maybe Imetrex only has a rare side effect of heart probs. Do you

have the insert info on it? I did Imetrex before, but it never did the

first thing to help. Take care, Pepi

[Guest guest]

The last time I saw a doctor was in February 1990. (when I got 14

> day treatment with rocepin) I don't go to doctors about this disease I

HATE

> that look they give ~ You know that " its all in your head look " OR " She's

> from Michigan she can't have lymes. "

Dawn, you have absolutely, possitively GOT to se an LLMD!!! You will NOT

get better, you will only get worse. Then who will care for your children?

Holler at lpurdy1040@... she is in MI and I bet she can get you

help. Lyme isnt just a horizontal illness, it will drag you down and can be

fatal. No, I am not being melodramatic, I am being 'deadly' honest. Get

Thee To an LLMD! *-)

[Guest guest]

In a message dated 7/3/01 5:25:04 AM, LymeDizzy@... writes:

<< Does anyone else have these severe headaches and what do

you do for them? Thanks so much

Robyn >>

Robyn-

We all used to get the killer headaches!!!!

Here are some suggestions....... oxygen is #1. If you can get access to an

oxygen tank, local fire/first aid dept. or if you can get a script for one OR

you can buy them from Canada, I believe, I have to check my source. IT HELPS

GREATLY!!!!

We also use a Rx 'Butalbital', or Ferrocet (sp?) but you cannot take it after

4pm or so, caffeine.

Silly as it sounds, massage also helps a bit at times.

I will tell you also that after LONG-TERM treatment, I do not have them

anymore AT ALL!!!!

sue in nj

sue massie

[Guest guest]

I have had extremely bad headaches, (and stabbing pains that will make me

lose control of the position my head is in ~ some pains last seconds some

longer. These pains have been getting fewer each year.) since my spinal tap

in early 80's. I have no idea if the tap had anything to do with the

headaches. The last time I saw a doctor was in February 1990. (when I got 14

day treatment with rocepin) I don't go to doctors about this disease I HATE

that look they give ~ You know that " its all in your head look " OR " She's

from Michigan she can't have lymes. "

Yes, IM sick of being in pain but I've lived with it for so long that IM used

to just complaining about it then going on with my day. (I'm a mommy of 4 and

I own a group daycare.)

I seem to have gotten of track (happens all the time) so I'll stop rambling

for now.

Dawn~

[Guest guest]

It doesn't sound silly, massage is an incredible

healing thing. Im in school for Therapeutic Massage

right now and I can't even tell you how many people I

have worked on in clinics that came in with a headache

and left without one. You can also do self massage on

your head and scalp, pressing on different pressure

points and doing some nice deep breathing. You will

know when you get the right pressure point, because

while you are pressing it, your headache will

diminish. Keep pressing for 1-2 minutes.

Also, when I was going through the worst of my

symptoms, the ONLY thing that helped my severe

headaches was acupuncture. Better than prescription

drugs, better than chiropractic, better than anything

else. I was headache free after 6 treatments, and now

go once a month to keep it up.

Hope that helps

Hillary

__________________________________________________

[Guest guest]

Many LLMDs today have gone " test-crazy " . That is because they need to

document your need for more antibiotics. So many are fearful of being

investigated that they are trying to take as many precautions as possible,

like testing everyone silly.

Robyn, you should just ask your LLMD why she wants so many tests. Ask what

difference the test makes, would she treat you any different if the test was

positive or negative. Ask her if she is being investigated or if the state

medical board, or any insurance company, has been doing any sniffing around.

An open form of communication with your doctor is so important in a variety

of ways.

You MAY find out that she's not so weird after all.

As for the Imitrex, did she prescribe the shot, pill or nasal spray? The

shot is definitely NOT to be used in anyone with heart or blood pressure

problems. However, the company says you can use the nasal spray and the

pill SOMETIMES in these patients. The first dose should always be

administer in the doctor's office though. The reaction to this med is VERY

scary even when you don't end up in the ER, that's just the way the med

works.

Again, have your friend talk to the doc about this. Feel out whether or not

she had any idea that this med is to be taken so seriously. If she is truly

clueless, it is probably time to find another doctor. But this decision

needs to be made by the patient after taking in as much information as

possible. And please talk with her first. Maybe you're just missing

something, or maybe she'll give you the perfect reason to leave.

Robynn

PS You can read the Imitrex insert from this page in PDF format:

http://www.glaxowellcome.com/pi/imitrex.pdf

[ ] Severe Headaches? Wack LLMD? hmmm

> Hi Everyone,

> Looking for a lil information here if possible. Throughout my ordeal

> with this illness the one thing I haven't had to deal with is the severe

> headaches. And trust me I " m grateful for that much. I do however have a

> friend who is male in his 30's and has been sick for a few yrs with Lyme

an

> co infection. He also has high BP and is on meds for that too. Problem is

> this. He see's the same doc I do and we both feel she's weird and her

> practices are weird allthough she does seem to know what she's doing and

is

> very involved in Lyme disease and co infection. She seems to be test happy

> though. Always wants blood always wants people to go for SPECT scans it's

> almost like everytime you walk through the door she wants to do another

test.

> Doesn't that seem strange?

> Anyways, my friend has severe headaches but like I said he's also on

BP

> meds. Well the other day she prescribed that new migrane med for him,

> Emetrex. The end result was he wound up in the ER and almost died from the

> reaction because it affected his heart. In my head any doctor no matter

who

> it is should know with his history of high BP NOT to prescribe meds like

that

> or am I wrong here? Does anyone else have these severe headaches and what

do

> you do for them? Thanks so much

> Robyn

[Guest guest]

I had Lyme headaches for 5 years that presented like migraine --for

years they were misdiagnosed as --duh!!-- migraine, but no migraine

medicine ever worked for me. What DID work was 28 days of HIGH DOSE

amoxycillin, about 6 grams. For the first week I felt like my body

was imploding, but thereafter I started to feel better, and by the

end of week four the migraines and associated nausea were gone, and

they have not returned.

Of course, I don't know if that will work for your friend, but in my

experience migraine due to Lyme responds to Lyme disease medicine,

ie, antibiotics, and NOT migraine medication.

Pam

> Many LLMDs today have gone " test-crazy " . That is because they need

to

> document your need for more antibiotics. So many are fearful of

being

> investigated that they are trying to take as many precautions as

possible,

> like testing everyone silly.

>

> Robyn, you should just ask your LLMD why she wants so many tests.

Ask what

> difference the test makes, would she treat you any different if the

test was

> positive or negative. Ask her if she is being investigated or if

the state

> medical board, or any insurance company, has been doing any

sniffing around.

> An open form of communication with your doctor is so important in a

variety

> of ways.

>

> You MAY find out that she's not so weird after all.

>

> As for the Imitrex, did she prescribe the shot, pill or nasal

spray? The

> shot is definitely NOT to be used in anyone with heart or blood

pressure

> problems. However, the company says you can use the nasal spray

and the

> pill SOMETIMES in these patients. The first dose should always be

> administer in the doctor's office though. The reaction to this med

is VERY

> scary even when you don't end up in the ER, that's just the way the

med

> works.

>

> Again, have your friend talk to the doc about this. Feel out

whether or not

> she had any idea that this med is to be taken so seriously. If she

is truly

> clueless, it is probably time to find another doctor. But this

decision

> needs to be made by the patient after taking in as much information

as

> possible. And please talk with her first. Maybe you're just

missing

> something, or maybe she'll give you the perfect reason to leave.

>

> Robynn

>

> PS You can read the Imitrex insert from this page in PDF format:

> http://www.glaxowellcome.com/pi/imitrex.pdf

>

>

> [ ] Severe Headaches? Wack LLMD? hmmm

>

>

> > Hi Everyone,

> > Looking for a lil information here if possible. Throughout

my ordeal

> > with this illness the one thing I haven't had to deal with is the

severe

> > headaches. And trust me I " m grateful for that much. I do however

have a

> > friend who is male in his 30's and has been sick for a few yrs

with Lyme

> an

> > co infection. He also has high BP and is on meds for that too.

Problem is

> > this. He see's the same doc I do and we both feel she's weird and

her

> > practices are weird allthough she does seem to know what she's

doing and

> is

> > very involved in Lyme disease and co infection. She seems to be

test happy

> > though. Always wants blood always wants people to go for SPECT

scans it's

> > almost like everytime you walk through the door she wants to do

another

> test.

> > Doesn't that seem strange?

> > Anyways, my friend has severe headaches but like I said

he's also on

> BP

> > meds. Well the other day she prescribed that new migrane med for

him,

> > Emetrex. The end result was he wound up in the ER and almost died

from the

> > reaction because it affected his heart. In my head any doctor no

matter

> who

> > it is should know with his history of high BP NOT to prescribe

meds like

> that

> > or am I wrong here? Does anyone else have these severe headaches

and what

> do

> > you do for them? Thanks so much

> > Robyn

[Guest guest]

> I couldn't agree more - My daughter with lyme gets theraputic massage

> and it is a tremendous benefit! I started taking my son for

> treatment of his tourette's as a last ditch effort before more

> medication - and it is working for him also. I really like this as

> an alternative to adding more med's. The problem is that it is

> expensive and not covered by insurance, so I am sure this type of

> treatment would be not affordable for many lymies.

Can you learn to do this yourself on your son and daughter? I can

give hubby a massage and help his headache, but of course, he cant/wont help

me LOL His attention span on anything that doesnt have 2 wheels is about

9.6 seconds *-) hmmmm .. wonder if I can make really good motorcycle

sounds .........

[Guest guest]

I couldn't agree more - My daughter with lyme gets theraputic massage

and it is a tremendous benefit! I started taking my son for

treatment of his tourette's as a last ditch effort before more

medication - and it is working for him also. I really like this as

an alternative to adding more med's. The problem is that it is

expensive and not covered by insurance, so I am sure this type of

treatment would be not affordable for many lymies.

> It doesn't sound silly, massage is an incredible

> healing thing. Im in school for Therapeutic Massage

> right now and I can't even tell you how many people I

> have worked on in clinics that came in with a headache

> and left without one. You can also do self massage on

> your head and scalp, pressing on different pressure

> points and doing some nice deep breathing. You will

> know when you get the right pressure point, because

> while you are pressing it, your headache will

> diminish. Keep pressing for 1-2 minutes.

> Also, when I was going through the worst of my

> symptoms, the ONLY thing that helped my severe

> headaches was acupuncture. Better than prescription

> drugs, better than chiropractic, better than anything

> else. I was headache free after 6 treatments, and now

> go once a month to keep it up.

> Hope that helps

> Hillary

>

> __________________________________________________

>

[Guest guest]

Thats very true, but more and more insurance companies

are offering coverage, and it changes all the time. So

you can just call the toll free number on the back of

your insurance card and ask if you have massage

coverage. Many cover massage if done in a course of

physical therapy. Also, lots of people have medical

reimbursment accounts set up through their companies,

massage bills can be submitted to those as well.

Massage is such a wonderful and healing thing, I wish

everyone had the opportunity to benefit from it

Hillary

__________________________________________________

[Guest guest]

In a message dated 7/3/2001 12:37:25 PM Eastern Daylight Time, rod@...

writes:

> maybe Imetrex only has a rare side effect of heart probs. Do you

> have the insert info on it? I did Imetrex before, but it never did the

> first thing to help. Take care, Pepi

Hi Everyone,

I get Lyme-migraines.

I used to take Imitrex for them.

The pills (tablets) worked fairly well, but sometime I needed 2. I took the

100 mg strength. I also tried the Imitrex Nasal Spray form, thinking it

would get rid of the migraine faster, but it didn't help at all.

The self-injection, intramuscularly, of Imitrex, worked best of all for my

migraines.

Since then, I've taken Zomig (zolmatriptan (sp?) ) tablets, which worked ok

at first, but stopped working.

Now I take Maxalt- MLT (MLT as in " melt " ).

They are migraine tablets resembling white, circular lozenges that dissolve

under the tongue. They dissolve incredibly fast. They leave a mild,

pleasant minty taste, very mild. No water is needed to swallow, so they can

be taken anywhere & at any stage of the migraine. Sometimes, if the migraine

doesn't go away within an hour, I have to take a 2nd dose. Maxalt-MLT has

been the best migraine med for me ever.

Hope this helps,

Hugs, a