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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » New Member

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Author Topic: New Member
Member # 21923

Icon 1 posted      Profile for Cap67     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello, my name is Cap- it's a nickname, lol
I have just joined this group and thought I would explain what got me here.

I have been having chronic pain for over 5 years. I have told mostly it was all in my head.

I have been dx with fibromyalgia, undetermined swelling problems, facet arthropathy,

sacroilitis, scoliosis, Rheumatoid Arthritis, Migraines, GERD, and some issues with depression, anxiety etc..

I used to go camping all the time, have found ticks on me-none that burrowed but did break the skin.

I do not remember having the "bullseye rash" but I am lucky I can remember yesterday, my mind is like swiss cheese now. I have problems with short term memory & concentration.

I am starting to have problems opening or holding things, like magazines, books without pain.

The RA meds they started me on helped at first but now aren't as much,

When all this started in 2004- I had worked in nursing for almost 17 years, I worked my way up from a cna to an rn.

At the end there I could not push a med or treatment cart, I could not stand for any leangth of time,

I tried to pass meds and I was in so much pain I could not stand 1/2 way through. I had pain that shot through my buttocks to me legs,

one or another, sometimes both. I also had a constant leg pain that was so intense,

it was such an intense ache, like it was in the bones and it alternated with the sharp pain.

I went from being totally independent to needing help with dressing, bathing, turning in the bed, walking, etc...

The pain was so intense I could not funtion. I went like this for almost 2 years,

being told the whole time because they could not find out what was wrong, it had to be all in my head.

Of course they only did limited tests and if they showed neg, that was it, they NEVER was proactive and tried to keep searching for a cause.

I went from doctor to doctor trying to get answers. I ended up at a neurologist, he put me on different pain meds until we found one that worked,

I have been on morphine for a few years now. it is the only thing that worked. Please do not think I am a druggie or that I am all out of it,

I am able to function, would not be on it if I was. However I am losing my insurance

and am tapering off and am going to see if I can manage without it. It is over 400 dollars a month just for it,

cannot go there. ok...did not mean to get off on a tangent, you do not want to hear about my ins. issues.

This neuro doc is the one who told me I had the sacroilitis, faucet arthopathy, he did patches, injections, physical therapy, and pain meds.

I tried to take antiinflammarories but they ALL made me sick. anyhow, the only thing that worked was the kadian.

The physical therapy only mae me worse. a Chiropractor did also, there was one day i could not walk, my legs were like jello, they would not hold me

and I ended up going from there in an ambulance to the er. I have had random pains that shoot through my body

, sharp, intense pains. It could be my wrist or hands one min. then my ankles, my knee or my legs, shoulder...

you get the gist..they can last a few seconds to minutes. The sharp pains in my sacrum & down my legs,

it can come at any time, I can be fine, walking and all of a sudden it hits and it takes my breath its so intense.

then it can last anywhere from minutes to days to weeks.

I have back spasms, I get lumps under my skin, like real knotted up muscles ( my hubby calls them fibro knots)

, I read the other day, with RA you get that, Soooo thats an overview of my problems.

I have related to the stories od many people who ended up being treated for lymes.

There is a girl here I read and it sounded like me, so I have decided to try and find out more

and see if I am wrong about my suspiscion or nor, I have been tested and it was negative.

I accepted that for quite some time and then I saw a medical show about lymes,

or rather it was mystery dx ( anyone watch that )?

They have had numerous cases that ended up being lymes and they said on there that like 50% have false negatives/even some have false positives.

I just want to know if I am maing to much of nothing

and some of you feel I should pursue finding a specialist to be tested further,,,,

TY for your time and I hope I have not bored ya to
I would appreciate any input

Posts: 25 | From Tennessee | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 18936

Icon 1 posted      Profile for Abxnomore     Send New Private Message       Edit/Delete Post   Reply With Quote 
This really a question for the Medical Section. Please post it there where you can get the benefit of many different opinions.

It does sound very possible that you may have lyme disease and co infections.

If you want help with a doctor referral, let me know.

Posts: 5186 | From Lyme Zone | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
If you did not test with Igenex it is very possible to get a false neg. It certainly sounds like Lyme to me.

Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 15920

Icon 1 posted      Profile for Siciliano     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello Cap67, you can edit, copy, paste to the "medical questions" forum.

Would you please remove your post in "seeking a dr" to do this, go to 3rd box to right of name, click on pencil and delete post.

Thank you and we are happy to have you. [hi]

I'm sorry but I am no longer accepting any private messages due to my own battle with lyme.

Posts: 3897 | From New Hampshire | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator

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hi cap,

and THANKS FOR BREAKING THIS UP for severely neuro lyme folks like me who can't read or comprehend what you originally wrote.

i have a solution here .... go to your top post and CHANGE SUBJECT LINE TO:

TENN. or show other states you'd go too...MISSOURI?? llmd needed

none in kentucky & some other small states near you.

1 llmd in all of tenn!!

then copy your entire post and start a new post in MEDICAL and show a SPECIFIC MEDICAL QUESTION YOU WANT ANSWERS TOO so you get readers attention who will reply to help you ok!!

go to bottom left side and mark box to receive all replies to your post here and the one you are starting as NEW POST IN MEDICAL ok.

also, i read something else you haven't been approved for SSDI; go to top of suppoort here and read over the VALUABLE INFO especially the RESIDUAL FUNCTION CAPACITY info from a SUPPORTIVE DR. ok!!

it can help you WIN your app. do you still qualify to fight to get this? you must have worked 20 quarters/ 5 years in last 10 years i believe!! good luck. hugs/kisses

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Member # 5220

Icon 1 posted      Profile for mbroderick     Send New Private Message       Edit/Delete Post   Reply With Quote 

The pain you describe is almost identical to what I used to feel in my arms and legs before I was treated for Bartonella....In my case, an extended course of Rifampin (along with many other combined antibiotices and herbs) is what finally cleared things up.

Do your feet also hurt? I recall it feeling like I was walking on rocks barefooted most of the time!

Posts: 2097 | From PA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
Member # 21923

Icon 1 posted      Profile for Cap67     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks to everyone who replied here, I will make

sure to move this to the medical questions

section, sorry for the inconvinence..

I am not able to see any doctor now as I have no

insurance, the state terminated it. My feet do

hurt but it is like it's an electrical kind of

pain that comes from my legs to my feet, it that

makes any sense. However when I do go barefoot,

my feet are very sensitive!! The only test I had

done was a

blood test, not sure what it is called. I tried

to get SSDI, my husband makes to much on SSD, I

do not qualify, I cannot get any kind of help.

Posts: 25 | From Tennessee | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 18239

Icon 1 posted      Profile for Dekrator48     Send New Private Message       Edit/Delete Post   Reply With Quote 

Most LLMD's do not accept insurance anyway.

It is not cheap to pay for treatment but it is worth it.

LLMD's are the only ones who really understand lyme and coinfections and know how to treat us properly.

Good luck and welcome!

The fibromyalgia I've had for 29 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

Posts: 6075 | From Pennsylvania, USA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator

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