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Cap67
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Member # 21923

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--------------------------------------------------------------------------------


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 anckles, 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 timem, 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 death....lol...Cap

I would appreciate any input

[ 09-27-2009, 01:49 PM: Message edited by: Cap67 ]

Posts: 25 | From Tennessee | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
just don
Frequent Contributor (1K+ posts)
Member # 1129

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welcome cap

your story sounds oh so famaliar.

Your GOING to get a request to break up your text like I have

using a double space between lines

some neuro lymies cant read it otherwise.

Its NOT hard to do once your used to it!!

"YOU" need the services of the BEST LLMD your money can buy!!!

Do you live in east or west tenn.??

reason I ask is its a long state and others can help direct you to best LLMD on your end of the state.

Stick around,,,its a GREAT place to be!!IB--just don--

--------------------
just don

Posts: 4548 | From Middle of midwest | Registered: May 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

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Welcome Cap!

Like Just Don said, your's is a familiar story here.

I would post in Seeking a Doctor Forum something like, 'Need LLMD in Tennesee' to get the ball rolling.

Going to an LLMD will start you on the right road.

[hi]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4625 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
kam
Honored Contributor (10K+ posts)
Member # 3410

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CAP...breaking this up so others like me might have a better chance of reading it...still no guarantees. HA!

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 anckles, 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 timem, 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 death....lol...Cap

I would appreciate any input

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
kam
Honored Contributor (10K+ posts)
Member # 3410

Icon 1 posted      Profile for kam     Send New Private Message       Edit/Delete Post   Reply With Quote 
CAP..if you scroll on down you will see a box to the left to check in order to receive an email when you get a reply on your thread.

If you are like me and forget to check your thread this is a good reminder.

I'd say your next step is to see a LLMD and have lyme and company ruled out or confirmed.

When I first came down sick and was finally dx, I went to a doctor several hours away who said he was a lyme specialist.

When I got there, I had to tell him how to read the Igenex Western Blot and he was concerned about me taking more than a few days of antibiotics.

But, he was from an ivy league school back east so he knew all about lyme and company. WRONG!

People on this board can direct you to a LLMD. NOt all states have LLMD's so you may need to travel.

And most LLMD's do not take insurance.

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

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Hi and welcome - you said you have been tested. As you heard on the Discovery show, the results can be all over the map.

When you connect with an LLMD, they will have you tested through the best labs and the best tests to do. So many labs and tests are inadequate.

Even with the best testing, 60-70% test positive who actually have Lyme/coinfections.

Thus, these diseases are treated clinically, based on history and symptoms.

You will feel better once you start treatment.

In my case. for instance, I had fibromyalgia for 25 years, and when I started clindamycin abx (I did 150mg 4x/day for the first month, then droppped down to 2-3x/day), by the end of a week I had zero fibro pain!

That's my story - we're all different - we all respond variously - the secret is to find the treatment that's going to work for each of us.

Posts: 12869 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Cap67
Member
Member # 21923

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thanks for your replies!

kam, I do not see the box you are refering to... is it on this page or somewhere else??

I do aplogize for my ignorance..

I see you say these docs do not take insurance huh?? well,

I have none anyways but will these docs work with you on payment or do you have to have it all up front or???

I can barely afford to see part of my docs here and get meds. Is there any kind of fund to help??

Posts: 25 | From Tennessee | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Hey caaaaaappppppppppp...

Hope you feel better soon.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20273 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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quote:
Originally posted by Cap67:

thanks for your replies!

kam, I do not see the box you are refering to... is it on this page or somewhere else??

I do aplogize for my ignorance..

I see you say these docs do not take insurance huh?? well,

I have none anyways but will these docs work with you on payment or do you have to have it all up front or???

I can barely afford to see part of my docs here and get meds. Is there any kind of fund to help??

cap, what kam is suggesting is for you to go back up to your 1st post and click on PENCIL/PAPER. this is the edit to subject line and body text.

at this point, go down to the LOWER LEFT HAND corner and mark box to receive all replies.


COPY KAM'S BROKEN UP VERSION OF YOUR POST, and while you are editing, post her version there. thanks!

delete your long post all as ONE LONG PARAGRAPH, which we can't comprehend or read ok.

to my knowledge, the llmds i've dealt with want the money up-front; others may have different stories; i don't know!


Welcome; I'm so glad you found us!! You've come to the right place for education and support!


lyme disease and CO-INFECTION symptoms lists .... check it out..
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386


Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" .
http://www.ilads.org/lyme_disease/treatment_guidelines.html


PAGES 17-19 discuss ADULT & KIDS MED TREATMENTS!
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/80440?#000006

Dr. B's Supplement List
http://www.lymepa.org/Nutritional_Supplements.pdf


this link, making the most of your LLMD visit, may help you also.
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=020605#000005

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77378

***************

TREEPATROL'S NEWBIE LEARNING LINKS ... over 1000 links of good info and guidelines galore!! MUST SKIM & READ !!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917
************************************************************************


Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.

please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.

now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.

then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND

we thank you for helping us; [Wink] otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
----------------------------------------------------

I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.

http://turnthecorner.org/lyme-disease-quick-facts.htm

I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on.
By member Aimee, 7.11.09
------------------------------------------------------

People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.

To find your state group, go to
http://health.groups.yahoo.com/group/statenamelyme

Type your state name and lyme as one word, like this -
http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename
and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
*******************************************

This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/


TESTING

You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:

www.igenex.com IGENEX

-----
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know.
========================

VERY important to read - even BEFORE testing:

Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.

But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
===========

TREATMENT *** www.ilads.org

ILADS
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.


UNDER OUR SKIN dvd LYME DISEASE documentary,
www.lymediseasefilm.com
go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!

HERXING REACTIONS ... understanding them!
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041517


please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.

IGENEX , CALIF. BLOOD TESTINGS ...check current $$!

OCT. 2008 PRICE LIST ... info only!! Showing what tests they do. PRICES HAVE GONE UP ON SOME!

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/78648?#000003


* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be!
* Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.

* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes

* The below tests were done for ME; you MAY NOT NEED them all ok! :

* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still.
*
* *******************************************************
* OPTIONAL ONES ARE:

* co-infection panel for YOUR AREA OF COUNTRY;
* PCR WHOLE BLOOD...this is what my LLMD ordered!

It's PREPAY! unless you are on medicare; IGX will file the
paperwork & it's FREE to you.

go to www.igenex.com and read over their info.
Prices go up twice a year: MAY and NOVEMBER!!

*
* have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!

* Also, call 1-800.832.3200 for CURRENT PRICES!
* They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!

* You need to DOWNLOAD IGENEX's required form.******************************************************
*
* MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.

Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg 
*
* When you get your results, please post them in MEDICAL;
* Post ONLY the POSITIVE & IND ones ....
not the negative ones!

GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!

OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=063751


* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

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Cap67
Member
Member # 21923

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Thanks everyone for your input!! I figured it out thanks!!
Posts: 25 | From Tennessee | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
   

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