Thanks for the Welcome

February 21, 2000

Hi EJ,

Wow, lucky girl to be on IV all these months, since April 1999, you must

have wonderful insurance. Many of us with the managed care type plans are lucky

to get a month. I recently was finally approved for iV and start tomorrow or

Tuesday. I plan to fight like a tiger to stay on as long as I need to. I know

what you mean feeling so much older than your actual age. I am 50, my Mom is 72

and she is in so much better shape than I, and runs rings around me with all she

can do. I am glad for her though. You are lucky to have such a wonderful

friend who hooked you up with the computer and the internet, I don't know how I

survived before I had it. It is the world at your fingertips. I am glad you

have enjoyed the group, and hope you post more often.

Hugs,

Marta

-

From: " emma jean cook " <ejcook@...>

Thanks folks for your kind welcome. I will certainly tell you my story

perhaps a little at a time as it is a long one. I have been getting better

gradually over a long period of time. I have been on IV antibiotics since April

of 99. I certainly understand your fears as some of you just begin. I agree

with the letter from Happy, I have been charting my days everyday, I feel that

is important to be able to have documentation. (Besides that I can't remember)

I take a rectal temp twice a day, a.m. and p.m., that helps me to understand my

cycle and those horrible things called HERX reactions. I have been extremely

fortunate to have a doctor that is very knowledgeable about LD and follows Dr.

Burrascano's protocol. As I said I was extremely ill before I was finally

diagnosed and had been treated for protocol infections and various other

symptoms. I reached a point where I was no longer able to work and had to give

up my job. I have a wonderful supporting husband and a very good family. My

children are grown and married and I am a grandmother. I am 52 years old,

sometimes feel like a hundred and two, on bad days, twenty two on good days

(just a little LD humor there). My recovery has been a slow, gradual

improvement. I go to physical therapy twice a week, again my program is very

low keyed, mostly stretching and strengthening exercises. It was very difficult

at first but with perseverance I was able to celebrate each small improvement.

I received a wonderful gift for my birthday from a very dear friend, she came by

with a computer for me. It has opened up a whole new world and I have actually

been getting Lyme-aid for a couple of months. You are a very caring and

supportive group. I appreciate your openness and your encouragement. Thank you

again, EJ

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February 23, 2000

marta,

50????? my dear u don't look a day over 29.....(grin).....

Reid

January 11, 2005

-HI Annette are you wearing the soft neck collar ??? YUCK I wore mine

for almost 2 months but I finally got used to it. When I finally took

it off my neck felt weird but it really did help. Welcome to the group

I hope you get to feeling better soon. Sharon Group owner

-- In neck pain , annette3225@s... wrote:

>

> Hi all,

>

> I'm Annette (aj_mystical_me),from Missouri. I have just went thru

> surgery on my neck last Monday( jan3)

>

> I had C4-C7 disks protruding and pressing on my spinal column. So

> they removed them and fused and plated my neck. The surgery lasted 5

> 1/2 hrs.

>

> So now I am trying to get used to wearing the brace, which is real

> annoying and getting used to the aching in the neck.

> Thanks for allowing me to join the group:)

>

> Annette

August 28, 2005

Let me say welcome to you also ..........sorry

I have not posted much lately but still try to read

them all.............we are glad to have you here and

I know you will find this the most informative place

and warm and compassionate individuals that you could

not find anywhere else..........we all care and

understand because we have been there............

Look forward to hearing more about you.

Gentle hugs from Pat in So Ore.

--- <yooperz@...> wrote:

> Just wanted to say thank you for the welcome to the

> group and for the

> advice. I will see a rheumatologist soon, will see

> what happens this

> week with the immunology blood work. I believe what

> I learn here in

> this group will help me to get doctors to take me

> more seriously. I

> am changing my primary care physician no matter what

> - I get

> occassional excruciating, debilitating headaches and

> have mentioned

> that the muscle relaxants and naprosyn the doctors

> tell me to take do

> not work. I can't believe that they have never had

> me try anything

> else. It is inhumane ot allow someone to feel such

> pain, either from

> the headaches or the other episodes I've had, unless

> there is a

> medical reason they can't take stronger pain meds.

> I also told one of

> the doctors at this clinic that my allergy

> medication, Allegra, wasn't

> working so well and Zirtec used to work better for

> me. He refused to

> give me a script for Zirtec and gave no reason. I

> was confused and

> dumbfounded and didn't ask him why he was reacting

> as he was.

>

> Bottom line is, I need to be a lot more aggressive

> about my healthcare

> than I have been. I liked seeing this group of

> doctors because they

> are osteopaths and they can do adjustments on my

> neck and back as

> well, but forget it - I can just see a chiropractor

> for the same

> treatments.

>

> Thanks again! Look forward to learning more as I

> lurk a bit here,

> will post questions as I have them. I think God led

> me here as an

> answer to my prayers where I asked Him, " now what?

> Where do I get

> information based on human experience (vs. a medical

> journal)?

>

> Elmblad

> Your Guide to Financial Software

> http://finacialsoft.about.com

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

March 2, 2006

In a message dated 23/02/2006 11:25:08 GMT Standard Time,

bigjkahuna@... writes:

hey everyone , i was beginning to think i forgot my deoderant,lol ,but

thanks for the welcome, ok again with the ?? how long does it take for

mtx to start working, i have been on it for almost 3 months, i am kinda

worried about the long term effects of the idesen, i have heard of

major stomach issues, any help is welcome kahuna

Hi again ,

The MTX never did really work too well for me on its own. When the added

Enbrel, things started to improve. It has worked well with lots of people

though.

Good luck,

August 7, 2006

I called my doctor's office with a similar question recently. I am

going to probably wait until June to have surgery, so I wondered if

I should wait awhile before having the myelogram. His office said I

should go ahead and have it done now, so the doctor can start

planning his strategy for surgery.

I know exactly how you feel about not wanting to have surgery

again! I found out about flatback about 4 or 5 years ago, and was

also quite angry that the horrendous ordeal of the original surgery

was responsible for much more pain than I had before surgery. I am

still not convinced that the original surgery was necessary in the

first place.

At first, I was dead set against revision surgery, but now, I see

that the pain is getting worse instead of better and there is no

chance of improvement without the surgery. My pain management

doctor has helped a lot, but I can't see that going for spinal

injections every three months is really a good long term solution.

It is good that your local doctors know what is wrong with you and

have a plan to fix it! I never would have known without the

internet. My local docs always just said I would have to learn to

live with the pain.

>

> Thank you and for the warm welcome. The last time I

had

> any contact with another " Harrington " person was over 20 years

ago.

> There were 3 of us in my high school (anyone out there from Long

> Island?) and we all were operated on by Hugo Keim. Popular guy.

> Anyway, I am living in North Carolina now (if anyone lives in NC

> could you email me please? I would love to talk to you.) and the

> doctor I went to see last week is Mark Hartman. He wants me to

have

> the myelogram and then go see another doctor who has done more

> revisions than he has. I do not know his name, but he is with the

> clinic. Dr. Hartman also said that great things are

> happening in spinal surgery right now in Charlotte. Whatever. I

am

> too pissed off to be happy about their " great things " but it is

> better than hearing that they don't know squat about what my

problem

> is. Dr Hartman walked in and told me all my problems before he

even

> looked at an xray or made me stand up. I felt like at least I had

a

> starting point. Right now I am trying to decide if I should have

the

> myelogram done now to get an idea of what is going on or if I

should

> wait till I need the surgery. I am more inclined to have the test

> done now to gauge the damage and determine how long I can delay

> surgery or if it needs to be done now. Any opinions?

> I do not think think that my pain is as severe yet as some

members.

> Although I have constant, never ending pain in my right leg, the

> Mobic had reduced it to a tingle instead of stabbing pain. That's

> good right? I can walk for great distances, sit without pain,

bend

> without pain and generally things are better. But I do look like

a

> ski jumper in training and I know that revision is in my future.

I

> cry alot thinking of the feelings of helplessness and pain

following

> surgery. I dread needing help of any kind physically. I am not

> ready to face the Mac truck just yet I guess. Well, thank you

again

> for the welcome. Hope to get to know you all very soon.

> -Joanie

>

August 7, 2006

---

Joannie,

Ski jumper is so funny...I looked the same way before my revision but

never thought of it that way until you pointed it out!!! Ready to

take the jump, slumped over , in position!!! I got a good laugh from

that.... hey if you can;t laugh what do you have left....????

I must report to you all that I went back to my YMCa this

morning....I had not been there in over 2 years. The from desk lasy

who remember me from before thought I had moved.....well I got to do

30 minutes on the lowest speed on the recumbant bike and EFX. I was

so winded..I am so, so out of shape..lets see if I can do it again

tomorrow morning before work!!!!! , PA

In , " myntjulip " <myntjulip@...>

wrote:

>

> Thank you and for the warm welcome. The last time I had

> any contact with another " Harrington " person was over 20 years

ago.

> There were 3 of us in my high school (anyone out there from Long

> Island?) and we all were operated on by Hugo Keim. Popular guy.

> Anyway, I am living in North Carolina now (if anyone lives in NC

> could you email me please? I would love to talk to you.) and the

> doctor I went to see last week is Mark Hartman. He wants me to

have

> the myelogram and then go see another doctor who has done more

> revisions than he has. I do not know his name, but he is with the

> clinic. Dr. Hartman also said that great things are

> happening in spinal surgery right now in Charlotte. Whatever. I

am

> too pissed off to be happy about their " great things " but it is

> better than hearing that they don't know squat about what my

problem

> is. Dr Hartman walked in and told me all my problems before he

even

> looked at an xray or made me stand up. I felt like at least I had

a

> starting point. Right now I am trying to decide if I should have

the

> myelogram done now to get an idea of what is going on or if I

should

> wait till I need the surgery. I am more inclined to have the test

> done now to gauge the damage and determine how long I can delay

> surgery or if it needs to be done now. Any opinions?

> I do not think think that my pain is as severe yet as some

members.

> Although I have constant, never ending pain in my right leg, the

> Mobic had reduced it to a tingle instead of stabbing pain. That's

> good right? I can walk for great distances, sit without pain, bend

> without pain and generally things are better. But I do look like a

> ski jumper in training and I know that revision is in my future. I

> cry alot thinking of the feelings of helplessness and pain

following

> surgery. I dread needing help of any kind physically. I am not

> ready to face the Mac truck just yet I guess. Well, thank you

again

> for the welcome. Hope to get to know you all very soon.

> -Joanie

>

August 8, 2006

When having a mylegram, make sure to have them put a pillow under your tummy. It takes away a lot of the pain you get from lying on your stomach. I think it's pretty much standard to offer you a pillow, but in case they don't, be sure to ask!

Bonnie

[ ] Re: Thanks for the welcome

I called my doctor's office with a similar question recently. I am going to probably wait until June to have surgery, so I wondered if I should wait awhile before having the myelogram. His office said I should go ahead and have it done now, so the doctor can start planning his strategy for surgery.I know exactly how you feel about not wanting to have surgery again! I found out about flatback about 4 or 5 years ago, and was also quite angry that the horrendous ordeal of the original surgery was responsible for much more pain than I had before surgery. I am still not convinced that the original surgery was necessary in the first place.At first, I was dead set against revision surgery, but now, I see that the pain is getting worse instead of better and there is no chance of improvement without the surgery. My pain management doctor has helped a lot, but I can't see that going for spinal injections every three months is really a good long term solution. It is good that your local doctors know what is wrong with you and have a plan to fix it! I never would have known without the internet. My local docs always just said I would have to learn to live with the pain.>> Thank you and for the warm welcome. The last time I had > any contact with another "Harrington" person was over 20 years ago. > There were 3 of us in my high school (anyone out there from Long > Island?) and we all were operated on by Hugo Keim. Popular guy. > Anyway, I am living in North Carolina now (if anyone lives in NC > could you email me please? I would love to talk to you.) and the > doctor I went to see last week is Mark Hartman. He wants me to have > the myelogram and then go see another doctor who has done more > revisions than he has. I do not know his name, but he is with the > clinic. Dr. Hartman also said that great things are > happening in spinal surgery right now in Charlotte. Whatever. I am > too pissed off to be happy about their "great things" but it is > better than hearing that they don't know squat about what my problem > is. Dr Hartman walked in and told me all my problems before he even > looked at an xray or made me stand up. I felt like at least I had a > starting point. Right now I am trying to decide if I should have the > myelogram done now to get an idea of what is going on or if I should > wait till I need the surgery. I am more inclined to have the test > done now to gauge the damage and determine how long I can delay > surgery or if it needs to be done now. Any opinions?> I do not think think that my pain is as severe yet as some members. > Although I have constant, never ending pain in my right leg, the > Mobic had reduced it to a tingle instead of stabbing pain. That's > good right? I can walk for great distances, sit without pain, bend > without pain and generally things are better. But I do look like a > ski jumper in training and I know that revision is in my future. I > cry alot thinking of the feelings of helplessness and pain following > surgery. I dread needing help of any kind physically. I am not > ready to face the Mac truck just yet I guess. Well, thank you again > for the welcome. Hope to get to know you all very soon.> -Joanie>

August 8, 2006

,

Gotta stick my 2 cents in here. Great to be back at exercise, I know, but please, go slow. For instance, increase time on the bike by a minute or two or three at a time, and add speed in brief segments, too. Don't jump in and do all new stuff with speed and a lot of time all at once. Don't want you to get hurt! :-)

Bonnie

[ ] Re: Thanks for the welcome

--- Joannie,Ski jumper is so funny...I looked the same way before my revision but never thought of it that way until you pointed it out!!! Ready to take the jump, slumped over , in position!!! I got a good laugh from that.... hey if you can;t laugh what do you have left....????I must report to you all that I went back to my YMCa this morning....I had not been there in over 2 years. The from desk lasy who remember me from before thought I had moved.....well I got to do 30 minutes on the lowest speed on the recumbant bike and EFX. I was so winded..I am so, so out of shape..lets see if I can do it again tomorrow morning before work!!!!! , PAIn , "myntjulip" <myntjulip@...> wrote:>> Thank you and for the warm welcome. The last time I had > any contact with another "Harrington" person was over 20 years ago. > There were 3 of us in my high school (anyone out there from Long > Island?) and we all were operated on by Hugo Keim. Popular guy. > Anyway, I am living in North Carolina now (if anyone lives in NC > could you email me please? I would love to talk to you.) and the > doctor I went to see last week is Mark Hartman. He wants me to have > the myelogram and then go see another doctor who has done more > revisions than he has. I do not know his name, but he is with the > clinic. Dr. Hartman also said that great things are > happening in spinal surgery right now in Charlotte. Whatever. I am > too pissed off to be happy about their "great things" but it is > better than hearing that they don't know squat about what my problem > is. Dr Hartman walked in and told me all my problems before he even > looked at an xray or made me stand up. I felt like at least I had a > starting point. Right now I am trying to decide if I should have the > myelogram done now to get an idea of what is going on or if I should > wait till I need the surgery. I am more inclined to have the test > done now to gauge the damage and determine how long I can delay > surgery or if it needs to be done now. Any opinions?> I do not think think that my pain is as severe yet as some members. > Although I have constant, never ending pain in my right leg, the > Mobic had reduced it to a tingle instead of stabbing pain. That's > good right? I can walk for great distances, sit without pain, bend > without pain and generally things are better. But I do look like a > ski jumper in training and I know that revision is in my future. I > cry alot thinking of the feelings of helplessness and pain following > surgery. I dread needing help of any kind physically. I am not > ready to face the Mac truck just yet I guess. Well, thank you again > for the welcome. Hope to get to know you all very soon.> -Joanie>

September 26, 2007

The doctor just said if there is something I can't do then just don't

do it. Easier said then done. I want my life back.

>

,

Sorry this reply took so long. I have short spurts of time that I

spend on the computer due to pain. And recently with my last 2 monthly

appts with my pain doctor I have had a total of 10 injections in my

cervical spine. I do get them in my lumbar spine also / sciatic region.

I've had injections, epidurals, radio frequency both on my neck and

lower back. What can I say, I only get very minimal relief from these

injections...if at all...plus they don't last for long if they work. I

don't know if they are talking about doing an epidural on you, also

known as a block, or if they are refering to the injections they're

doing in the office being more specific in origin. When I see the

bills turned into the insurance co. (that sometimes wind up here too)

they do say facet joint injections on them. As far as I know it could

be the office injections they're refering to, or maybe it is the

epidurals...which are flouriscopically guided...can't really say for

sure. Sorry not much help but would need to hear more about it. The

injections in the office are generally a cortisone med with an

anestetic in there to help numb it. I don't know very much about what

does what, but have had many. There are some side effects to the meds.

just so you know, I wasn't told first but did have some. It's

different for everyone. All experiences are individual in their

results too.

Best Wishes to you!

Debbie C.

September 26, 2007