Pain

[Guest guest]

I have been on Ultram (tramadol) for pain - it has helped sooo much - just last

month my regular doctor took me off I think she thinks I am taking for nothing -

anyways searching for a different family doc - it is not considered a narcotic -

please try as many of us are on this and it helps sooooooo much.

Good luck,

Diane

________________________________

From: bridget <blueyes7648@...>

Sent: Fri, December 18, 2009 11:57:37 AM

Subject: [ ] Pain

 

I am in so much pain all the time, jaw, face/head, neck. My LLMD gave me

gabbapenton, and it seems to take the edge off, taking the max amount, has

anyone else found a good pain relief???? Prescription or non? I have an appt.

next week, so any ideas to tell my doc would be great. He is new to late stage

lyme I guess, so he is learning as he goes I think.

Bridget

[Guest guest]

Diane, thank you! I have tried it, didn't work, but maybe it wasn't enough. I

just informed my family doc of having lymes, this last year she has been really

hesitant to give me anything for pain, since we didn't know what was causing it,

she gave me a couple different things to try, but always started on the lowest

dose, and I always felt like I was begging for drugs and didn't want her to

think I was just trying to get narcotics or something. I just couldn't explain

to her how much pain I am in all the time. Maybe now that I have a diagnosis she

will be more willing....

Bridget

>

> I have been on Ultram (tramadol) for pain - it has helped sooo much - just

last month my regular doctor took me off I think she thinks I am taking for

nothing - anyways searching for a different family doc - it is not considered a

narcotic - please try as many of us are on this and it helps sooooooo much.

> Good luck,

> Diane

>

>

>

>

> ________________________________

> From: bridget <blueyes7648@...>

>

> Sent: Fri, December 18, 2009 11:57:37 AM

> Subject: [ ] Pain

>

>  

> I am in so much pain all the time, jaw, face/head, neck. My LLMD gave me

gabbapenton, and it seems to take the edge off, taking the max amount, has

anyone else found a good pain relief???? Prescription or non? I have an appt.

next week, so any ideas to tell my doc would be great. He is new to late stage

lyme I guess, so he is learning as he goes I think.

> Bridget

>

>

>

>

>

>

>

>

[Guest guest]

methadone, 10-20 mg daily is the only med that has made a difference in my

daughters extreme pain. Thankfully it is inexpensive and doesn't make her

feel all drugged and sleepy and she can actually function.

In a message dated 12/19/2009 7:43:55 A.M. Eastern Standard Time,

lhkenkel@... writes:

Bridget,

I was on Percocet for pain for a year. I had the same symptoms as you do.

The neck pain was almost too much to bear and the knee pain was

debilitating to the point that I could not stand up from the toilet. I had to

lower

myself onto the floor and crawl. I was switched from Percocet to Vicodin and

then Oxycontin was added in. So I now take a healthy does of Vicodin and

Oxycontin on a daily basis. I have also introduced Lyrica, Neurontin, soma and

now Cymbalta. I think the Cymbalta might be working but I am not sure

since I take about 20 pills and IV Rocephin daily. It is hard to tell what med

affects what system at this point.

HTH,

Lissa

> >

> > I have been on Ultram (tramadol) for pain - it has helped sooo much -

just last month my regular doctor took me off I think she thinks I am

taking for nothing - anyways searching for a different family doc - it is not

considered a narcotic - please try as many of us are on this and it helps

sooooooo much.

> > Good luck,

> > Diane

> >

> >

> >

> >

> > ____________ ____ ____

> > From: bridget <blueyes7648@>

> > _ @groupLyme-_ (mailto: )

> > Sent: Fri, December 18, 2009 11:57:37 AM

> > Subject: [ ] Pain

> >

> > Â

> > I am in so much pain all the time, jaw, face/head, neck. My LLMD gave

me gabbapenton, and it seems to take the edge off, taking the max amount,

has anyone else found a good pain relief???? Prescription or non? I have an

appt. next week, so any ideas to tell my doc would be great. He is new to

late stage lyme I guess, so he is learning as he goes I think.

> > Bridget

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Bridget,

I was on Percocet for pain for a year. I had the same symptoms as you do. The

neck pain was almost too much to bear and the knee pain was debilitating to the

point that I could not stand up from the toilet. I had to lower myself onto the

floor and crawl. I was switched from Percocet to Vicodin and then Oxycontin was

added in. So I now take a healthy does of Vicodin and Oxycontin on a daily

basis. I have also introduced Lyrica, Neurontin, soma and now Cymbalta. I think

the Cymbalta might be working but I am not sure since I take about 20 pills and

IV Rocephin daily. It is hard to tell what med affects what system at this

point.

HTH,

Lissa

> >

> > I have been on Ultram (tramadol) for pain - it has helped sooo much - just

last month my regular doctor took me off I think she thinks I am taking for

nothing - anyways searching for a different family doc - it is not considered a

narcotic - please try as many of us are on this and it helps sooooooo much.

> > Good luck,

> > Diane

> >

> >

> >

> >

> > ________________________________

> > From: bridget <blueyes7648@>

> >

> > Sent: Fri, December 18, 2009 11:57:37 AM

> > Subject: [ ] Pain

> >

> >  

> > I am in so much pain all the time, jaw, face/head, neck. My LLMD gave me

gabbapenton, and it seems to take the edge off, taking the max amount, has

anyone else found a good pain relief???? Prescription or non? I have an appt.

next week, so any ideas to tell my doc would be great. He is new to late stage

lyme I guess, so he is learning as he goes I think.

> > Bridget

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Bridget,

I hope she will be more understanding - this disease is so painful my wish is

for everyone just to understand that one part of this disease!!  What we have

to endure daily - my 14 year old is so good at hiding pain to her friends and

school and even to her dad that she doesn't live with - so he doesn't truly

believe the she is in pain and truly sick allot.  Oh well - we not only battle

our own pain and hell then we have to be judged daily by others that truly have

NO clue - I am searching for another family doc who will understand this pain

but for now I have been ordering off the Internet - more expensive but I can not

take care of my family or myself without taking the tramadol (ultram) please

give it another try - as 4-6 50mg a day I have to take - I think they might even

have it in slow release now - but not sure............try it again as many

others take it also - I was put on it for my back pain and it helps so much with

my muscle

pain...........good luck and don't ever give up as we deserve to live as a

normal life as we can!!

Diane

________________________________

From: bridget <blueyes7648@...>

Sent: Fri, December 18, 2009 8:53:26 PM

Subject: [ ] Re: Pain

 

Diane, thank you! I have tried it, didn't work, but maybe it wasn't enough. I

just informed my family doc of having lymes, this last year she has been really

hesitant to give me anything for pain, since we didn't know what was causing it,

she gave me a couple different things to try, but always started on the lowest

dose, and I always felt like I was begging for drugs and didn't want her to

think I was just trying to get narcotics or something. I just couldn't explain

to her how much pain I am in all the time. Maybe now that I have a diagnosis she

will be more willing....

Bridget

>

> I have been on Ultram (tramadol) for pain - it has helped sooo much - just

last month my regular doctor took me off I think she thinks I am taking for

nothing - anyways searching for a different family doc - it is not considered a

narcotic - please try as many of us are on this and it helps sooooooo much.

> Good luck,

> Diane

>

>

>

>

> ____________ _________ _________ __

> From: bridget <blueyes7648@ ...>

> @group s.com

> Sent: Fri, December 18, 2009 11:57:37 AM

> Subject: [ ] Pain

>

>  

> I am in so much pain all the time, jaw, face/head, neck. My LLMD gave me

gabbapenton, and it seems to take the edge off, taking the max amount, has

anyone else found a good pain relief???? Prescription or non? I have an appt.

next week, so any ideas to tell my doc would be great. He is new to late stage

lyme I guess, so he is learning as he goes I think.

> Bridget

>

>

>

>

>

>

>

>

[Guest guest]

I have tried to stay away from the narcotics. I was on celebrex for 6 months and

now on Etodolac 600mg ER which I think is really doing a great job. I have such

progressive arthritis in my knees from the lyme that I do get injections every

three months. WIthout the injections, I would not be able to walk at all. We are

unsure if the arthritis will continue to progress or if it will stop or even

resolve once my lyme is erraticated. I take Ultram for pain and percocet if the

pain is unbearable.

Momtomonsters

>

> Bridget,

> I was on Percocet for pain for a year. I had the same symptoms as you do. The

neck pain was almost too much to bear and the knee pain was debilitating to the

point that I could not stand up from the toilet. I had to lower myself onto the

floor and crawl. I was switched from Percocet to Vicodin and then Oxycontin was

added in. So I now take a healthy does of Vicodin and Oxycontin on a daily

basis. I have also introduced Lyrica, Neurontin, soma and now Cymbalta. I think

the Cymbalta might be working but I am not sure since I take about 20 pills and

IV Rocephin daily. It is hard to tell what med affects what system at this

point.

> HTH,

> Lissa

>

[Guest guest]

Hi Bridget.

How much is " maximum " for your doctor regarding gabapentin? Some folks with

peripheral neuropathy, etc take much more than I could tolerate. (e.g. I'm on

900mg/day, my father is on over 1800mg/day) If you look at the Rx'ing info, they

mention etremely high doses. If it takes the edge off, and you can tolerate it

well, maybe looking into a higher dose would be an option. My neuro doc recently

told me that Lyrica is " like concentrated gabapentin, but without the sedation

for most people " . It's expensive, but maybe you could try that? (It didn't work

for me: my nerve pain got worse, so I quit it.)

I tried tramadol myself, once a doctor was convinced that I was really in pain.

It seemed to take the edge off, but really didn't do much. Stayed on it for

years, until my kids didn't need me driving them all over the place. Through a

doctor change and him acknowledging my pain as real, I've eventually ended up

on: the gabapentin, ms contin, vicodin, and an NSAID. Even with all of that I've

ended up getting epidural injections twice, which don't work well enough for me

to be worth what they cost us. My pain is reduced to about 6 or 7 (on a scale of

10) with these drugs.

Long story short it's taken 12 years but I was finally diagnosed with a movement

disorder that seems to be at the root of much of my pain (this disorder kicked

in prior to what we now know were Lyme symptoms). Like you, I have pain in the

face, jaw, head and have the entire time, as well as the neck (which is the

worst of it for me), upper back, shoulders... on and on.

I'd long suspected that all of my pain couldn't possibly be from Lyme and,

unlike many on this group, I've had the problem of getting my docs to accept

that new or worsening issues aren't " the status quo since Lyme " and actually

investigate.

I'm not saying that I believe you have another issue. It could just be that Lyme

damamged your nerves and that's what you have to deal with. In my case though,

dystonia was causing twisting of my spine and the arthritis and disc problems

that come with it have caused further nerve damage. I think it's prudent to

occasionally step back from Lyme and review yourself as a whole. Lyme may still

factor in, but some things won't be recognized from a limited perspective.

Not sure I got my point across, but I do know how rotten you must be feeling!

Keep pushing the docs until they help! It took 12 years for me, but I'm finally

getting somewhere.

All best,

> >

> > I have been on Ultram (tramadol) for pain - it has helped sooo much - just

last month my regular doctor took me off I think she thinks I am taking for

nothing - anyways searching for a different family doc - it is not considered a

narcotic - please try as many of us are on this and it helps sooooooo much.

> > Good luck,

> > Diane

> >

> >

> >

> >

> > ________________________________

> > From: bridget <blueyes7648@>

> >

> > Sent: Fri, December 18, 2009 11:57:37 AM

> > Subject: [ ] Pain

> >

> >  

> > I am in so much pain all the time, jaw, face/head, neck. My LLMD gave me

gabbapenton, and it seems to take the edge off, taking the max amount, has

anyone else found a good pain relief???? Prescription or non? I have an appt.

next week, so any ideas to tell my doc would be great. He is new to late stage

lyme I guess, so he is learning as he goes I think.

> > Bridget

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi All:

I have had chronic pain for about 20 years and Lyme for about 40. My worst

symptoms (that sent me to a doc first) were the chronic pain - originating in

spine, then neuropathy, joint pain, the headaches, of course - had those since a

child but never went for treatment. Anyway, I have seen a pain specialist for

about 16 years - even before discovering I had Lyme.

As everyone experiences almost the identical issues w/primary care docs - we are

drug seekers when we want help w/our chronic pain, because they can't find

anything wrong w/us. I was near suicidal until I started seeing my pain

treatment specialist. I recommend anyone to find a pain specialist if your

doctor is allowing you to live in pain. Just as you all finally seek out a Lyme

specialist once you find that an infectious disease doc or your family doc won't

properly treat your Lyme, you should look into finding a pain treatment doc.

It saved my life and they even sent me on to specialists to try to find out what

was the root cause of the pain when they were unable to figure it out. I live

in San Francisco Bay Area and if anyone wants a reference to my pain specialist

feel free to contact me privately.

[Guest guest]

Deronda,

I know only too well what it's like to be up in the middle of the night with pain or insomnia. I will keep you in my thoughts and prayers in the hopes that this appointment will be a success for you. Hang in there!

Jeanne

[ ] Pain

Hi group, Its 3:00 a.m. I woke up in severe pain just took my pain meds which usually only help a little. Hoping I can get a few more hours sleep before leaving for St. Louis this morning. I am not looking forward to riding in the car for 6 1/2 hours. I'm hoping the doctor can help me for the time being get the pain under control. I know something has to be done.Please keep me in your prayers today as I travel and tomorrow as I see the doctor. Thanks to all Deronda

[Guest guest]

I am taking vicodin 5/325 every 6 hours

From: Andy Stanton <andystanton@...>Subject: [ ] Re:Pain Date: Sunday, December 20, 2009, 8:18 PM

Deronda,

What pain medication are you taking?

Andy

[Guest guest]

I am now in St. Louis and did better than expected riding in the car, we made it in 6 hours.

I am looking forward to my appointment tomorrow morning. Thank you all for your support and prayers.

Deronda

From: Dorcas Cecil <dcecil@...>Subject: RE: [ ] Pain Date: Sunday, December 20, 2009, 4:14 PM

Deronda,Maybe you'll check in this evening & see this. I, too am keeping you in my thoughts & praying for you during your long drive & hoping you get some answers tomorrow that will start you on the road to some relief.

Dorcas

St. Louis

[ ] Pain

Hi group, Its 3:00 a.m. I woke up in severe pain just took my pain meds which usually only help a little. Hoping I can get a few more hours sleep before leaving for St. Louis this morning. I am not looking forward to riding in the car for 6 1/2 hours. I'm hoping the doctor can help me for the time being get the pain under control. I know something has to be done.Please keep me in your prayers today as I travel and tomorrow as I see the doctor. Thanks to all Deronda

[Guest guest]

Hi ,

I've tried to email you privately but it doesn't show up in my sent box so I'm not sure you received it. Please contact me privately I would really like to chat more, maybe even by phone if you feel comfortable. Its great to hear about the group that helps in Michigan I really would like to know more. I talked to many people in the waiting room but didn't think anyone would possibly be in the group. I too wish we could of met for real. I'm looking forward to hearing from you.

Deronda

From: coyk76 <mlcoykendall@...>Subject: [ ] Re: Pain Date: Monday, December 28, 2009, 3:47 AM

Deronda :)We talked in the waiting room at Bridwell's office last Monday (21st) but I didn't realize until later that it was you. I am so sorry. I had this feeling when you spoke to me that I should know you but I just couldn't place it. I kept looking at you and trying to figure it all out. Then I overheard you say that you were from the St. ph area and it still didn't quite click. We (my husband and I) got in the car to drive home and it hit me like a ton of bricks as to who you were. UGHH I wish I would have realized it sooner so we could have chatted more. I had my surgery in October and am doing AWESOME. I have absolutely NO pain (after almost 20 yrs of it) and am standing 5 inches taller now. It's CRAZY! What did you find out at your appointment? Will you have surgery? Did they get the pain controlled? Let's keep in touch! Again, I am so sorry I didn't put it together sooner- I would have loved to have met you for real. If you

have any questions or there is anything I can do- please let me know. And if you ARE having surgery- let me know. There is a group here in Michigan that supports families that have to travel for medical care. They gave us a laptop with webcams to use, a hospital bed, a DVD player, care packages, financial support to pay for housing, etc. They were great! Also, we stayed at the Haven House there in St. Louis and they were soooo awesome. Only $50 a night and they feed you two meals a day and will transport you to appointments if needed. They are VERY nice. We are already booked to stay there again in March (3/1) for my next follow up appointment. Email me sometime. > > > From: Dorcas Cecil <dcecil@...>> Subject: RE: [ ] Pain> > Date: Sunday, December 20, 2009, 4:14 PM> > >  > > > > > Deronda,Maybe you'll check in this evening & see this. I, too am keeping you in my thoughts & praying for you during your long drive &

hoping you get some answers tomorrow that will start you on the road to some relief.> Â > Dorcas> St. Louis> > [ ] Pain> > Â > > Hi group, > Its 3:00 a.m. I woke up in severe pain just took my pain meds which usually only help a little. Hoping I can get a few more hours sleep before leaving for St. Louis this morning. I am not looking forward to riding in the car for 6 1/2 hours. I'm hoping the doctor can help me for the time being get the pain under control. I know something has to be done.> Please keep me in your prayers today as I travel and tomorrow as I see the doctor. Thanks to all >

> Deronda>

[Guest guest]

Has anyone here *not* had this problem? ; )

Just joking, but seriously: what you're going through is utterly typical of

Lyme. And a recent CALDA study found out that it takes the average Lyme patient

an average of two years to get an accurate diagnosis.

It probably doesn't ease the pain to know you're so not alone. But it might at

least ease your peace of mind to know that no, you're not crazy; and yes, there

are a lot of people out here going through pretty much the exact same thing.

Sara

On Jan 26, 2010, at 4:00 31AM, jmescal12.com50@... wrote:

> I have stage 3 nero the pain in my body is unreal memory loss vision problems.

Was not detected for two years and then found out I dad stage 3 lymes and now

R/A most of my life is filled with pain. Has anyone ever had this problem?

>

>

>

> ------------------------------------

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

Dear

Severe pain was my primary issue for more than 20 years. It was only in the

last 10-12 years that my docs finally gave me adequate pain relief, but no

Lyme dx until 2006 (was bit in 1986 w/classic Lyme rash). I've had to take

time release morphine and/or hydrocodone for many years.

However, after doing 30+ sessions of HBOT and raising my Vit D level from 20

to 30+ my pain has decreased by about 2/3. I'm not sure exactly what cut

the pain but those were the 2 treatments I was doing when my pain

decreased. My pain has stayed at the new lower level for over a year now.

I hope that gives someone hope that reduction in pain is possible.

Of note, 2-3 years of rotating oral abx did not seem to influence my pain.

Kendra

On Tue, Jan 26, 2010 at 6:00 AM, jmescal12.com50@... <

jmescal12.com50@...> wrote:

> I have stage 3 nero the pain in my body is unreal memory loss vision

> problems. Was not detected for two years and then found out I dad stage 3

> lymes and now R/A most of my life is filled with pain. Has anyone ever had

> this problem?

>

[Guest guest]

Dear Kendra,

Severe pain is also one of my very disabling symptoms along with the low Vit D.

I've started HBOT. How long and how frequent were your 30 HBOT sessions? Also,

what were your medication dosages and frequency for the morphine, hydrocodone

and Vit D? Do you still have to take those medications? Thank you so much for

sharing this info and if you'd like you can email me

@specialtyhitches@.... Thanks..................Kerry

________________________________

From: Kendra <KCuyler@...>

; jmescal12.com50@...

Sent: Wed, January 27, 2010 3:33:54 AM

Subject: Re: [ ] Pain

 

Dear

Severe pain was my primary issue for more than 20 years. It was only in the

last 10-12 years that my docs finally gave me adequate pain relief, but no

Lyme dx until 2006 (was bit in 1986 w/classic Lyme rash). I've had to take

time release morphine and/or hydrocodone for many years.

However, after doing 30+ sessions of HBOT and raising my Vit D level from 20

to 30+ my pain has decreased by about 2/3. I'm not sure exactly what cut

the pain but those were the 2 treatments I was doing when my pain

decreased. My pain has stayed at the new lower level for over a year now.

I hope that gives someone hope that reduction in pain is possible.

Of note, 2-3 years of rotating oral abx did not seem to influence my pain.

Kendra

On Tue, Jan 26, 2010 at 6:00 AM, jmescal12.com50@ ymail.com <

jmescal12.com50@ ymail.com> wrote:

> I have stage 3 nero the pain in my body is unreal memory loss vision

> problems. Was not detected for two years and then found out I dad stage 3

> lymes and now R/A most of my life is filled with pain. Has anyone ever had

> this problem?

>

[Guest guest]

Dear ,

What Dr helped diagnose your lymes. I am in excruciating pain and I hope I

remember sending this email. I have no family support. They think i'm mentally

ill and need a physchiatrist. I spend day after day in bed with no one to help

me. I don't know how much longer I can stand the pain and isolation. I haven't

found a Dr to help me. Thanks.....KD

________________________________

From: " jmescal12.com50@... " <jmescal12.com50@...>

Sent: Tue, January 26, 2010 6:00:31 AM

Subject: [ ] Pain

 

I have stage 3 nero the pain in my body is unreal memory loss vision problems.

Was not detected for two years and then found out I dad stage 3 lymes and now

R/A most of my life is filled with pain. Has anyone ever had this problem?

[Guest guest]

Kendra; I too suffer from the most horrific pain as well as a huge list of

neurological symptoms; when I moved from Cal to CT and went to my new PCP he was

furious that I was on time relase oxy (40mg); said that Absolutely nobody with

LD could require narcotics for pain treatment and basically called me a drug

addict; told me I needed to check into a rehab center and get off it or would

end up like ; he had me in tears. I have to tell you, without

the oxy I am totally bedridden; needless to say I fired that dr and found an

LLMD who is refilling my oxy but i think he too wants me off it and has

requested i go to pain management? I am not sure what that entails but i think

it too is an effort to minimize the pain meds; the pain is so severe, even with

the meds I cry every day and struggle to do the most menial of tasks; are there

others that rely on strong pain meds? you are the first i have heard that is on

morophine; is that better than the oxy? are you worried about the addiction

factor? i am to a point but realize i have to do whatever it takes to get

through the day. appreciate any input, thanks, robin

>

> > I have stage 3 nero the pain in my body is unreal memory loss vision

> > problems. Was not detected for two years and then found out I dad stage 3

> > lymes and now R/A most of my life is filled with pain. Has anyone ever had

> > this problem?

> >

>

>

[Guest guest]

Dear Kerry

When I started HBOT I was told that I had to go 6 days a week for the first

30 sessions, so I went every day except Sunday for the 1st month. Then

I did another couple weeks just going during the week. Just getting there

every day was really hard and wore me out. I basically got out of bed and

went there and came back home and went back to bed. Unfortunately, except

for the pain relief I didn't feel much better from the HBOT.

Several years ago I took a type of time release morphine called Kadian that

was just once a day. I also took Norco 10/325 for inbetween pain. After a

few years I swtiched to methadone (10 mg - up to 6 per day) just because of

the cost (methdaone is much cheaper. I also continued to take Norco 10/325,

2-4 per day.

Pain management is another hot button issue with docs. It was really hard

to get adequate pain relief, especially in the beginning. At first I was

sent to a ridiculuous pain mgmt program where we sang songs about our pain

and studied the 4 basic food groups, among other nonsense at outrageous

prices.

There are support groups for finding good pain docs, you just have to keep

looking. I finally found a doctor in northern IL who believes in treating

w/long term RX for chronic pain. If anybody wants his name, please email me

privately: KCuyler@...

Kendra

On Wed, Jan 27, 2010 at 11:48 PM, Kerry Dye <specialtyhitches@...>wrote:

> Dear Kendra,

> Severe pain is also one of my very disabling symptoms along with the low

> Vit D. I've started HBOT. How long and how frequent were your 30

> HBOT sessions? Also, what were your medication dosages and frequency for the

> morphine, hydrocodone and Vit D? Do you still have to take those

> medications? Thank you so much for sharing this info and if you'd like you

> can email me @specialtyhitches@.... Thanks..................Kerry

>

[Guest guest]

Robin, I too am in excruciating pain, I currently have vicoden, which doesn't

touch the pain, and the doctors are very stingy and bitchy about even that! My

LLMD wants me to also go to a pain management group, pretty much I think that

they know it's going to be a long haul and don't want to deal with the narcotic

stuff. Hope you get some relief and feel better soon! I am trying to get some

long acting morphine as well, a doctor that has lyme herself recommended it, she

is no longer in practice, so she can't help me out there...

Bridget

> >

> > > I have stage 3 nero the pain in my body is unreal memory loss vision

> > > problems. Was not detected for two years and then found out I dad stage 3

> > > lymes and now R/A most of my life is filled with pain. Has anyone ever had

> > > this problem?

> > >

> >

> >

[Guest guest]

KD, Where do you live and maybe someone can suggest a doctor - you have to start

treatment. You will get better with treatment, but you are going to have to be

consistent with it and you may feel worse before you get better - but you can do

it!!!!

>

> > I have stage 3 nero the pain in my body is unreal memory loss vision

> > problems. Was not detected for two years and then found out I dad stage 3

> > lymes and now R/A most of my life is filled with pain. Has anyone ever had

> > this problem?

> >

>

>

[Guest guest]

Your LLMD probably wants you to go to a pain professional because a) pain

management is its own speciality, and that's not what his office does, and

prescribing serious pain meds to long-term patients brings down a lot of

official scrutiny on doctors, and that's the last thing an LLMD needs or wants.

They're already walking too many close lines in their use of abx. Prescribing

pain meds will invite all kinds of nasty inquiries into their business that they

really need to avoid.

American MDs across the board are really squirrely about prescribing pain meds

because the " war on drugs " means that the DEA is looking over their shoulders

with every pill they hand out. That's why they hand their patients over to pain

management specialists, who have more leeway in prescribing hard painkillers.

Though they're also watched like hawks, it's assumed that by the time you get to

see them, you really need their help; and they're specially trained to spot and

manage addiction as part of their work.

It's different here in my corner of Canada, where we have good computer medical

records that flag doctor-shoppers and drug-seekers. Since all your drug data is

one file that any doctor can get into, doctors feel considerably more

comfortable that they're not handing out hard drugs to someone they shouldn't

be. Also: to the extent that we have a " war on drugs, " it's mostly aimed at

gangsters trying to smuggle out BC bud to parts south. All in all, there's just

not the official panic about this that you see in the US. The upshot is night

and day when it comes to handing out serious pain meds. Here, you need them, you

get them, NOW. The doctors really don't want people to suffer unnecessarily.

Robin, hydromorphone (synthetic morphine, brand name Dilaudid) is a MUCH better

drug than oxy. It's still addictive, but not nearly so much so. It can be taken

for a lifetime without too much in the way of side effects. If you're in pain,

it doesn't space you out. If your LLMD is going to send you to a pain

specialist, GO!!!

Your new PCP is right to be concerned about oxy. It's bad stuff. But your

comeback is: Fine, I'll get off the oxy -- but I still need to manage the pain.

So, what are you going to do about that? If the doctor won't be responsive to

your pain, that's a clear sign that this doc is not the one for you.

Sara

On Jan 28, 2010, at 8:13 05AM, bridget wrote:

> Robin, I too am in excruciating pain, I currently have vicoden, which doesn't

touch the pain, and the doctors are very stingy and bitchy about even that! My

LLMD wants me to also go to a pain management group, pretty much I think that

they know it's going to be a long haul and don't want to deal with the narcotic

stuff. Hope you get some relief and feel better soon! I am trying to get some

long acting morphine as well, a doctor that has lyme herself recommended it, she

is no longer in practice, so she can't help me out there...

> Bridget

>

>

>>>

>>>> I have stage 3 nero the pain in my body is unreal memory loss vision

>>>> problems. Was not detected for two years and then found out I dad stage 3

>>>> lymes and now R/A most of my life is filled with pain. Has anyone ever had

>>>> this problem?

>>>>

>>>

>>>

[Guest guest]

Any LLMD in SYRCACUSE?

Lonera

> Robin, I too am in excruciating pain, I currently have vicoden, which doesn't

touch the pain, and the doctors are very stingy and bitchy about even that! My

LLMD wants me to also go to a pain management group, pretty much I think that

they know it's going to be a long haul and don't want to deal with the narcotic

stuff. Hope you get some relief and feel better soon! I am trying to get some

long acting morphine as well, a doctor that has lyme herself recommended it, she

is no longer in practice, so she can't help me out there...

> Bridget

>

>

>>>

>>>> I have stage 3 nero the pain in my body is unreal memory loss vision

>>>> problems. Was not detected for two years and then found out I dad stage 3

>>>> lymes and now R/A most of my life is filled with pain. Has anyone ever had

>>>> this problem?

>>>>

>>>

>>>

[Guest guest]

Robin,

I am also on 40 mg Oxycodone 2x daily with 7.5 mg Hydrocodone (Vicodin) every

4-6 hours in between. Prior to that I was taking Percocet. I have been on

painkillers for two years, now. I am definitely dependent upon the painkillers

at this point. Physically, I have gone through withdrawal once and it, was

simply put, awful and probably worse than having LD, itself.

I am pretty sure that my body has also developed a tolerance to the meds but at

this point I am am maintaining the levels that I need to avoid withdrawal. I

have spoken with my LLMD about tapering off, but then started IV Levaquin and

went through a really bad herx which put me right back at square one with pain.

Anyone who tells you that they are on narcotic painkillers for any extended

period of time and are not addicted is not being truthful with you or

themselves. Your body develops a physical dependency and I also think that

psychologically you become dependent upon it. I know that for me the painkillers

also help me with my rage and sort of " keep the edge off " as well.

This is a pretty shameful experience for me as I am a person who in the past had

avoided even taking so much as an aspirin for pain, but when it got to the point

where I could not bend down to pick up my toddler or I could not stand up from

sitting on the couch or the toilet, I had to be honest with myself. I am also

honest with myself about the addiction factor, clearly, and when the time is

right, I will work very hard to get it all out of my system, but for right now,

I simply need the meds to help me function like a normal person.

HTH,

Lissa

> >

> > > I have stage 3 nero the pain in my body is unreal memory loss vision

> > > problems. Was not detected for two years and then found out I dad stage 3

> > > lymes and now R/A most of my life is filled with pain. Has anyone ever had

> > > this problem?

> > >

> >

> >

[Guest guest]

Hey Bridget!

I've been out of phone service this week and am lonely for a text message. Sorry

you're having such terrible pain. My doc told me yesterday that a lot of people

get pain relief from doing coffee enema's. I wasn't sure if i'd mentioned them

to you yet, but its something you might try.

Will talk this weekend.

Thane

> > >

> > > > I have stage 3 nero the pain in my body is unreal memory loss vision

> > > > problems. Was not detected for two years and then found out I dad stage

3

> > > > lymes and now R/A most of my life is filled with pain. Has anyone ever

had

> > > > this problem?

> > > >

> > >

> > >

[Guest guest]

thank you for sharing that; very much my experience and shared feelings about it

as well; i was always the " organic " girl who would never even go to a dr-let

alone take a prescription drug...but like you said we do what me must. I am

terrified what withdrawl will be like when it comes time but my family is with

me on this and knows i need to be on them for now. thanks to everyone who

responded to my post; all we can hope for is that someday we will all be

Lyme-free and not need any meds. Don, your post gave me hope that there is an

end in sight and we can feel well again. best to all, robin

ps-my LLMD does not believe in supplementing Vit. D; any comments?

> > >

> > > > I have stage 3 nero the pain in my body is unreal memory loss vision

> > > > problems. Was not detected for two years and then found out I dad stage

3

> > > > lymes and now R/A most of my life is filled with pain. Has anyone ever

had

> > > > this problem?

> > > >

> > >

> > >