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» LymeNet Flash » Questions and Discussion » Medical Questions » Lymes???

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Author Topic: Lymes???
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
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
You very well could have Lyme. You definitely have many of the symptoms. The testing is poor .... in fact, if you only had the screening test, it's about 50% accurate.

Please keep researching. This is a good place to start, so is .... specifically the treatment guidelines written by Dr B.

You can beat this if it is Lyme, but it takes a long time. I am back to being 100% functional after being totally disabled.

Also check out

And, yes, for sure pursue a specialist. Post in seeking doctors and someone will send you names.


Posts: 13449 | From Ohio | Registered: Feb 2007  |  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 
I agree with six.

Get to a LLMD to help in diagnosis.

I was almost in that wheelchair riddled with pain.

Testing, ha, be sure to get copies of all testing.

Many have found out they had positive bands and somewhat positive tests that doc

did not know that specific bands could mean Lyme. Very important.

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
LymeNet Contributor
Member # 11182

Icon 1 posted      Profile for DeniseNM     Send New Private Message       Edit/Delete Post   Reply With Quote 
You need to see a proper LLMD for diagnosis. I don't remember getting bit either, but looking back, I'd say I've had Lyme for over 20 years, and am just now starting to treat. The sooner you get into treatment, the sooner you'll be done with it.

GOod luck!

dx: MS in 1998
2007 - Lyme suspected
2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS
gall bladder out 7/09
Ceftin, Zith, Septra
Monolaurin, DHEA, Pregnonelon, Curcumin

Posts: 243 | From New Mexico | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator

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I personally think it is probably lyme, and that you should get to an LLMD. Don't settle for any other doctor, because even WITH a positive test for lyme, some mainstream docs Still don't think that's necessariliy accurate.

Plus, they wouldn't know where to begin as far as treatment, and they would most likely send you on your way after a few weeks of treatment.

Don't settle for the pain you have been dealing with. Get to the bottom of it and get to an LLMD.

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LymeNet Contributor
Member # 21483

Icon 1 posted      Profile for LizaLu     Send New Private Message       Edit/Delete Post   Reply With Quote 
It may be helpful to get re-tested for Lyme. I had an Equivocal Western Blot, but positive ELISA after 5 years of wondering what the heck someone slipped in my coffee...i have felt poisoned for the last 2 years.

There are many people here with your exact symptoms...Lyme affects soo many people differently.

I was told i was negative when i had bands, because my regular MD didnt know any better. Than i had a IgeneX that came back positive. I pursued that despite the cost out of pocket. Desperate times = desperate measures. Find an LLMD and you will find out the truth, either way.

Posts: 123 | From Minneapolis, MN | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
Consider getting tested for other pathogens too...HHV-6, EBV, Cpn, Enterovirus.

Do a search at lymenet using my member number and "viral testing" and you'll get more info.

Test for lots of things...treat what looks most obviously wrong.

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Welcome!! [Smile]

Opinions, not medical advice!

Posts: 94069 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator

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