dlp252

Happiest of Birthdays to you!!!! You deserve it!

Happy Birthday one and all!!!!

Does anyone know of any gluten-free places in Grand Cayman? This is my 1st post!

Hi, welcome! I don't have an answer for you, but I'm glad you asked because I'll be in Grand Cayman in a little over a month! Eagerly awaiting answers, lol.

Not having the strenght to read through nearly 10,000 posts, can you tell me what test you used to diagnose the lyme? I believe I have a lyme issue. My tests came back negative. I think it was missed.

Just wanted to say hello and welcome to our little piece of the world.

Yeah...she DOESNT have Lyme so I'm thinking she should be the one keeping everything straight. Maybe we are all so amazed and stunned at her abilities simply because its so far beyond anything we can comprehend with our moments of diminished thinking and "dingoing" everything that is of importance.

Yep, I dingo what I just read, lol.

Yikes on that quote Rinne! See, one of the reasons why I find it hard to believe I could have Lyme is because I live in California. For six years I lived in Hawaii, and did some camping there...and did the week long hiking thing in Vermont. Once I went camping up north near Napa somewhere. I did spend some time up near Lake Tahoe, but not out in the woods.

Hello and welcome! Dietary response is just as valid as other methods! My GI doctor (mainstream) doesn't agree with the Enterolab testing, but he can't argue with a positive dietary response!

Constantly amazed by Andrea, who seems to be able to do it all!

I think round Rhonda and round mia are walking around somewhere with skinny Donna.

Yay Susan for having fun on the first day! See, I knew they'd love you!

I had a really interersting talk with my department's secretary last night- totally random but she told me she has Fibromyalgia. her symptoms sound JUST LIKE ours (yours, mine, all of us) so I told her that my doctor was pretty sure that my "fibro" was secondary to something else and that I was being tested for Lyme's. She wants me to keep her posted. It was so strabge though, I started crying while talking to her because she's the first person I've talked to face-to-face who knew EXACTLY what my symptpms felt like.

Yep, I have a good friend who has fibromyalgia really bad. As we've talked over the years, her symptoms seem so similar to mine...there are a few differences. I've tried to relay some of the things I've learned over the years, but I think she is one who accepts the diagnosis. She is on pain medication nearly constantly I think now and nothing seems to help. I think one of the reasons we became such good friends is because we had found someone to talk to who understood what it was like and we didn't judge each other for not being able to do something that everyone else thought we should be able to do.

x

X, will be thinking of you and praying that you can have fun at this wedding!

I am still mostly warm although my hands and feet are often cold and like you I don't tolerate heat well which I think also goes with Lyme, it would make sense that if the spirochetes like the cold they would not like the heat.

Did I mention that I can't tolerate heat, lol!!! Really!

Hum, I'm cold sometimes but not all the time, but I DO have a low body temperature, low blood pressure, and probably low adrenals...I DO almost always have cold hands and feet.

Donna,

I think getting the Bioset wouldnt be a bad idea. That way you can get some kind of picture of what might be occurring. If you did have Lyme the HN docs wouldnt be the ones to diagnose or treat this. They have various tests that they use for figuring stuff out. I was sort of dubious about the accuracy of some them. I had a test that checked for antibodies against all kinds of virus's or bacteria. Nothing showed up on the test. One of the bacteria included in the test was the Lyme bacteria. It didnt show anything...but I never took that as a definate "I dont have Lyme". It wasnt proper testing for Lyme. They tested me for mercury in a similar type of bloodtest....looking for antibodies against heavy metals. Again...I was not aware of this type of testing to completely be a reliable way of finding out if there is a metal toxicity.

I am more trusting of the stool tests for parasites, adrenal testing....stuff like that but I wouldnt use their "functional" tests for trying to diagnose something like Lyme or mercury toxicity or anything else that is hard to diagnose and requires very specific testing.

The Bioset lady is good...very *smart* about Lyme, mercury and allergies. If you wanted to see my Dr....you could at any time...you dont need a referal from HN (as Andrea has pointed out).....you could self-refer.

If the Bioset showed Lyme...you could then take that info. and persue Igenix testing or see a qualified Lyme Dr....you could take the info. you get from the test and share it with your doctors and try to go from there. I dont know if Bioset "automatically" tests for Lyme. My Dr. had wrote down "Please test for MCS and Lyme"....and had me give it to her. She almost forgot to test for Lyme...I reminded her and she had to get the Lyme vials from another room....so I'm thinking she doesnt always check for it. So if you do get the test....make sure she checks for Lyme.

Yep, see, this is kind of how I was thinking too...if you wouldn't mind, would you PM me the name of the BioSET lady? I saw a couple in our area, but yours sounds really good, so I feel better about that than just picking one out of a phone listing or internet list.

I bookmarked this for possible referral to doctors, lol.

I have a cruise exactly 1 month from today, so I'm excited. This won't be my first cruise, but it will be the first time cruising since finding out about my gluten/casein intolerance...in fact my last cruise was what led me to get tested. I've heard Princess does well, and I know from my past cruises with them that they really do TRY to prepare your food the way you need it. I'm more nervous about the time away from the ship...like in the ports. We will probably do some shore excursions one of which is 8 hours long, so food would definitely be an issue. Plan to take my own stuff, so we'll see.

a drive-by....here's a quick joke I got this morning.....had to share.....

A woman calls her boss one morning and tells him that she is staying home because she is not feeling well.

"What's the matter?" he asks.

"I have a case of anal glaucoma," she says in a weak voice.

"What the hell is anal glaucoma?"

"I can't see my ass coming into work today."

'bye everybody........

See, those quirky artists will love you! (speaking as one who is quirky and used to paint, lol).

Sounds fishy to me. Maybe you can be referred to Rachel's new doc.

Yah, I'm trying to decided WHEN is a good time to ask them, lol. I've only just begun to see them, and I know in Rachel's case they had seen her for a few months and weren't able to help her. They are still in the "I know we can help you" thing, and I'm not sure that they can't, and in fact I think maybe they can, so I'm thinking I should get to the best point they can take me. I don't have the strong reactions to everything like Rachel did, so I'm thinking I should give this all a chance first. On the other hand, if the darned thing is Lyme, I'd want to know that sooner rather than later...that's kind of why I'm thinking BioSET first...that way they can "see" what's wrong and I'd have some idea of where to go from there. I don't know, I can't think straight.

Susan, you'll do fine at your job! The cash registers are all computerized, I'm sure it's mostly automated. AND, I'm assuming you won't be working alone! Praying just the same.

I actually think I might do the BioSet thing just to see what it says. If that indicates Lyme at all, maybe I'd pursue it...I don't know if the HN doctors can test for it since they referred Rachel to someone else...I'm debating (with myself, lol) whether to give the mercury removal and treatments at HN a few more months to work, or just go see what's up now.

About the antibiotic treatment for Lyme...are they specific antibiotics, cuz I've surely had plenty of antibiotics during the last 4 years...an astonishingly mind numbing amount...one course was 4,000mg per day of augmentin for about a month...maybe that kept any symptoms (if it was/is Lyme) from being worse.

About the stress thing...always had a fair amount of stress, but 10 years ago is when everything blew up. We had a huge stressful thing at work...we're a lawfirm in Silicon Valley and deal with a lot of internet .com companies, so our business was growing faster than we could add people to handle it. I was regularly working 12 hour days or more and sometimes 6 days a week or more. Then I lost two really good friends (not death, lol, one moved to a different state and the other became a client from h*ll) who would have been my support base for what was about to come...from 1995-1996 I lost seven members of my family, first my grandmother, then the next month a favorite aunt, then the following month another aunt...then my father, uncle and aunt were killed in a car crash...the stress at that time was unbelievable. My sister and I were named co-excutors of my dads stuff, and having to deal with the legal issues at that time was unbearable...especially on top of having just lost two friendships, and the stressful time at work. Then I found out that another aunt had died, and no one told me. Looking back, it's no wonder my health went down hill after that. Anyway, my hiking trip in Vermont was just before all this happened...I think in 1994 or 1995--we hiked through the woods and I never wore a hat, but did wear long sleeves and long pants/jeans. Not long after that I started getting repeated bouts of bronchitis, but nothing too serious and started getting really tired and worn down feeling. It wasn't until after my hysterectomy in 2001 that my health really took a bad downturn though developing environmental allergies to nearly everything they tested me for--never had a single allergy before also started having chronic sinus infections and the fatigue was extreme....does that make any sense, lol?

Yes, love the new terminology...dingo an idea!

Symptomatic presentations of Lyme disease include:

Fatigue

Low grade fevers, "hot flashes" or chills

Night sweats

Sore throat

Swollen glands

Stiff neck

Migrating arthralgias, stiffness and frank arthritis

Myalgia

Chest pain and palpitations

Abdominal pain, nausea

Diarrhea

Sleep disturbance

Poor concentration and memory loss

Irritability and mood swings

Depression

Back pain

Blurred vision and eye pain

Jaw pain

Testicular/pelvic pain

Tinnitus

Vertigo

Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)

Headaches

Lightheadedness

Dizziness

Ya'all know I have ALL THOSE symptoms...sheesh!

Hmmm....my bite was in the vicinity of my left shoulder. I would say my most affected joint would be my jaw joint (TMJ)....would this be the "closest" joint?? Interestingly all of my problems have been most severe in this region....from my shoulders up. The left side has ALWAYS been much worse. My neck stiffness is probably 80% on the left and only 20% on the right.

This describes me EXACTLY...PT guy pulled my head too quickly to the left yesterday and I nearly jumped off the table. If I was bitten on my hiking trip to Vermont years ago, it would have had to been on my head somewhere, cuz I never saw one on my body...I wouldn't have noticed if it was in my hair, which is usually at least shoulder length.

Completely off topic---sorry to x

I don't know directly, but my old chiropractor used to use them...she gave me some info eons ago, but I never did any testing with them.

Congratulations!!!

The important thing Carla is that you are doing all that you can do right now and everything you are doing is supporting your health. I know waiting is a drag but at least you will be having the right test.

I agree!! Yay for Adam!!!!

Sometimes my tears burn...hasn't happened too often though. I like the new Rachelville law!

Wow, so much wisdom in this group! I am almost speechless with the words of wisdom spoken on these pages!

Laura - so sorry about the flaming jerk doctor...you're at NIH now, so hoping you are having a MUCH better day there today.

Rachel - my reaction to alcohol is so much like yours...I posted that about 4 pages ago, lol...used to be able to handle quite a bit, but 1 will definitely cause all kinds of "hangover" type symptoms and major D.

Wow, okay, I read a lot but can't remember now.

Great posts from so many.

Julie - I had a follow-up appt. yesterday with the nutritionist at the new clinic...she handed me a handout explaining the next part of the elimination diet. I didn't look at the thing until I was almost ready for bed, but it said this... "Other reactions may include gas, bloating, diarrhea, brain fog, headache, muscle or joint pain without due cause, wheezing, mucus production, MOOD SWINGS, irritability, CRYING SPELLS, skin rashes, excema, psoriasis, etc." That was a list of some of the things to look for when adding foods back in...I'm wondering if what you're going through now is a delayed reaction to the food you were eating or maybe even a slight "detox" from not eating it anymore.