My monster headaches led me to finally get a brain MRI. I had the good luck to have my MRI read by a bright radiologist who noted that my multiple lesions looked like MS but looked more like sequellae of Lyme disease. Which led me to recall the tick bite and the little, innocuous looking red ring that appeared around the tick bite and stayed there for a few weeks. No big deal, huh? No Lyme here in northern California, right?

When I went to see the best neurologist in town, he read the MRI, listened to me relate the tick bite tale, listened to my symptoms (all classic neuro Lyme, by the way), and grudgingly ordered blood work for Lyme. When he ordered it from Quest, I said, 'Ahem, I've read that you really must order that from Igenex or Bowen, they're the only labs that can accurately test for Lyme...' He vehemently disagreed and overruled me. Needless to say, I tested negative on the Quest test.

But, because of the fantastic advice on this Board, and the good steer you guys gave me, I consulted with LLMD Dr. J in Chico, who only accepts like two new patients a month but must've felt sorry for me and let me in the door. He sent my blood off to Igenex and I got my report back yesterday. My Western Blot IgM is not only triple positive but CDC positive for Lyme.

It's hard to believe I'm celebrating having Lyme but after months of being scared of having MS, trust me -- I'm celebrating having Lyme. (I will probably soon eat these words but for now let me have my little 'I don't have MS' party!)

It is pretty scary that supposedly the best neurologist in Redding doesn't even know how to test people for Lyme when they are presenting with brain lesions, headaches, and a known tick bite with a rash, and even telling him (nicely!) how to do it. It REALLY makes you want to educate people.

Sorry this has been long... Thanks for everything you guys do!!!

I hope your treatment goes well and that you get relief from whatever symptoms you have.

Sorry you have Lyme, but it's a treatable illness.
How long do you think you've had LD?

GREAT news!!!!! I am VERY happy for you! I know it is good to finally know what the heck is going on!!!

I know this is corn-eeee.. but I feel so lucky to be here and see posts like this. I know first hand how hard and how lonely... and how awful scarey it is not knowing. To finally have answers is sooooooooo much better. I share in your happiness! You are a "success" story for sure!

And... for you my dear.. I will be putting on my big hat, the one with fruit all over it... and I will dance on the top of the dining table to celebrate your good news!

And someday soon.. when you are feeling better.. maybe together we can help others who were given an MS diagnosis... by some idiot friends of your idiot in Redding... that really have Lyme!

Those folks, bless their hearts, are some of the hardest to convince to check out Lyme as a possibility... so any first hand help you can provide for them through your experience will be VERY helpful!

Wishing you smooth sailing from here on out!

Keep us informed as to how you are doing. We will be glad to help in any way we can.

------------------
If you get the choice to sit it out or dance...

quote:

---

Originally posted by cigi:
What were your symptoms for neuro lyme? Having this, I'm curious to what yours were. Cigi

---

Thanks for the welcome and good wishes, everyone!

The main symptom was unending, crushing migraines, nearly 24/7. I dreaded going to a doctor for just "headaches." I am never sick and hated going for something that isn't obviously bleeding or broken. But when I broke down and first went to my GP a year ago, the headaches were non-stop, waking me up at night, head hurting before my feet hit the floor in the morning, ruining my day, not responding to megadoses of Advil and Excedrin. My periods had ceased at age 45. My GP did bloodwork and determined my thyroid had also virtually ceased. I had become "depressed" for the first time in my life; she put me on an antidepressant. I also confessed to her that I had become inexplicably so snippy and short-tempered that people fled for cover when I came around! :-)

Other symptoms I have: extreme sensitivity to sound (sharp or sudden noises make me jump out of my skin) and exhaustion (after working all day I'm ready to collapse in the evening but can't because I'm a single parent and still have stuff I have to do!).

I have been mercifully spared the body Lyme many of you have and have never had a single problem from my arms down, no arthritis or joint pain (except for some pain in my forearms).

quote:

---

Originally posted by Ruffy:
Do you know if the lesions resolve with Abx? Did your LLMD mention that to you?

---

Some of the lesions may resolve with ABX. Not necessarily all. I have a LOT of them. The main thing is, at least I won't be getting any more of them! When I see him next on June 29, he is going to be talking about IV antibiotics because of the extent of the lesions. I am going to be trying to talk him out of it. It sounds very scary to me. I know, I know, 'Listen to your LLMD already'!!!!

Michelle

quote:

---

Originally posted by cbb:
Michelle, with a story like that, you have reason to party!!
Sounds as if your Guardian Angel was working overtime.

Sorry you have Lyme, but it's a treatable illness.
How long do you think you've had LD?

Has your LLMD considered Co-Infections?
Working with a LLMD, your prognosis should be good.
Keep in touch & let us know how you're doing.

---

Thanks, CBB. I was bitten about three years ago. I think my LLMD has ruled out some co-infections based on symptoms; for example, I have never had night sweats, therefore he does not think I have babesia. When I see him next time he might do more tests. I've only seen him once so far.

I'm so lucky you guys steered me in his direction. It's only an hour and a half from here. They are so nice and knowledgeable and available.

I feel that my Guardian Angel was definitely working overtime and pushing me in the right direction when I "Googled" up this message board!

:-)

quote:

---

Originally posted by cigi:
I understand you being happy about getting a diagnosis. I was thrilled when I found out I had an abnormal brain spect scan. At least you're on the right track now. What were your symptoms for neuro lyme? Having this, I'm curious to what yours were. My MRI was clear,but my spect scan showed hypoperfusion in the brain (circulation slowness) due to encephilitis, vasculitis, lyme or medications can cause. Had mine in Columbia.

I hope your treatment goes well and that you get relief from whatever symptoms you have.

Good luck
Cigi

---

Sorry, Cigi, let me further add: loss of short-term memory, and general brain "fog." In fact, so much so that I forgot to add these in to my previous post and they're BIG time symptoms! I will forget what people told me 15 minutes ago. I am mortified by it! I cannot remember what messages were on my machine when I pushed "play" after I got home from work. What's really awful about this is that people think you're just being inattentive or lazy-minded. My own boyfriend will give me an annoyed look and say, "I just TOLD you that." I will feel horrified and guilty.

I work in a criminal defense law firm. People call in with various tales of woe. Sometimes at the end of one of these calls I will look blankly at the telephone and have absolutely no idea of the thread of their story. I simply will not have "gotten" it.

Sometimes I will come to the same freeway exchange I drive to every single day and suddenly not know which one to take. I have to coach myself carefully, "OK, stay in the center lane when it splits, YOU IDIOT."

Maybe this kind of thing is familiar???

I call it "swiss cheese brain."

:-)

Had a Hotline call for Lyme Disease Network of South Carolina & didn't remember that I had posted my reply.

Another call coming in now.
Will check back later.

Glad you took our advice & got a GOOD dx lab to correctly dx you! I hope you sent that duck a copy of your POSITIVE LYME CDC dx!

See that you are working still, I'm giving you a bunch of info below on various things including filing for SSDI benefits IF you reach that point where you no longer can work. Best wishes! We're here for you as you are for all of us Michele.

Here's TREEPATROL's and tincup's combination newbie links.
[URL=http://flash.lymenet.org/ubb/Forum1/
HTML/029917.html]http://flash.lymenet.org/ubb/Forum1/HTML/
029917.html[/URL]

Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! [URL=http://www.lymeinfo.net/lymedisease
treatment.html]http://www.lymeinfo.net/lymediseasetreat
ment.html[/URL]

==========================================================
You'll see from this site that there are between 40-50+ posts/replies here daily.

So to help us all, please be as specific as possible for the TOPIC line, example, "is it ticks only transmitting?" You will get many more replies as we try to help you, help us out.

Also, you can EDIT your text anytime. You can NOT edit a subject line so that's why it's important to get it specific the 1st time since we all have limited time here..ok.

You can just reply back to others; you don't need to quote them. If you do use the quote box, please be sure to remove the BOLD [B] at the beginning and ending of the quote. The bold is really hard on us late-stage lymies whose vision is so supersensitive.

Also, please try to limit paragraphs to 6-8 lines of text only and double space between paragraphs...again helping the many late-stage lymies on board. Thanks so much for your helping us, help you.... You'll learn a lot here by all!

==========================================================
I came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...Alzheimer's/dementia, Parkinson's, Bell's Palsy, MS, FMS, CFS, IBS, etc. and was posted on www.lymenet.
org.

300 OTHER medical condtions mimicking lyme disease w/citations and author's
name, Art Dougherty, Calif., 2001, is at bottom of site page! [URL=http://www.geocities.com/HotSprings/
Oasis/6455/misdiag-links.html]http://www.geocities.com/HotSprings/
Oasis/6455/misdiag-links.html[/URL]

Hope you each find some good info there. Saw it's from Art Dougherty, Calif. in 2001. [URL=http://www.geocities.com/lymeart3/
misdiag-links.html#disease]http://www.geocities.com/lymeart3/
misdiag-links.html#disease[/URL]
=============================================

IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS
=========================================================
This message is sent upon subscription, and again monthly.
Please let the moderators know if any of the links have changed.

There are several links found by clicking on 'Links' on the
website or by going directly to [URL=http://groups.yahoo.com/group/
Disinissues/links]http://groups.yahoo.com/group/
Disinissues/links[/URL]

There are many more links, as well as advice, in the "useful" messages
in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues
and click on Files.

BETTY NOTE: Look at the female MD's DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future!
http://www.cfids-me.org/socsec.html

These links are a compilation of several areas of interest which are
commonly requested and mentioned. They reflect the collected wisdom
of this group. Check them out - you just might find the information
you were looking for! Take a look at Files that are not specific to
your situation, because they might be helpful anyway - what works for
Social Security may work for LTD claims, what applies to CFS may apply
to your medical condition.

The Welcome Message and Group Guidelines are also in Files, if you
need a refresher on how this group works.

You must register with Yahoo to use the website, but note:
Be careful not to permit your address to be put into the directory
when you register. Put as little as possible into your public profile.
You do not need a Yahoo address to use the website. Your email address
is what Yahoo calls your "alternate address."

Contact the moderators at
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or for AOL subscribers:
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An online friend of mine from disinissues web site posted this info today, so I have copied it over here.

Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?

Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.

There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet. I too plan on including this info when I send my FINAL packet of info to chief alj before my June 16, 05 hearing...my last chance!
=======================================

Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....

Also after this article are the following articles:

WHAT COULD BE CAUSING DELAYED-PHASE FLARES?

BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..

TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.

MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS

DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY

I printed this out in larger print for my eyes....9 pages! Will read it thoroughly and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also....

bettyg, Iowa

I hope your healthy days come soon and there is a quick ending to your nasty headaches!

No MS does = happy dance. I have a friend with MS.

I know it DOES seem crazy to celebrate the news of diagnosis of a terrible disease, but we here all know that it IS new to celebrate!!!

Could you slip me the names of the good and the bad docs in that area? I am moving to Turlock in the upper valley in a month and need a doc to take over my treatment there.
Much appreciated!
[email protected]