dlp252

can lyme's disease cause joint pain? I have struggled with joint pain for two years. No test shows why that is. My old lyme test was negative. Do you know if lyme can cause joint pain? I have ordered the ignex kit.

Yes I definitely think joint pain is one of the major symptoms if I'm not mistaken! I've had unexplained joint pain for a long time too. I've even had xrays and MRIs of my knees, but they didn't show anything, not even arthritis. A lot of that cleared up when I went gluten free and casein free, but I still have some--it's just not as bad as it was.

Rinne- what you said about steroids scared me, lol. I took them really regularly for the last 4 years up until this last year...everytime I had a sinus infection (which was about every 6 weeks), they gave me huge doses of antibiotics and prednisone!

Sounds like a great appointment Rachel...I can't wait to see this lady. Now, if I could just get a free day somewhere, lol. I think I saw that they have Saturday appointments...hum. Can I handle SIX days of appointments, lol?

Bev - wow, the black flies definitely sound suspect!

Julie - I've sure missed your regular posts...hope you feel better soon.

Wish I could remember the genes I have, lol. I'm pretty sure I have 1 celiac and 1 intolerance gene...but alas, the explanation is dingoed.

The HN doctor is having me take a supplement called Pectosol. It's pectin taken from citrus and it's supposed to bind with the mercury that is turned loose in the system by the amalgam removal. I didn't do a lot of research on it, but did find a couple of websites that mention it. Anyway, it was a special order and it came in yesterday, so I took some as soon as I got home from PT/chiro yesterday, and have taken some this morning. She wants me to take it for the 5 days or so surrounding each amalgam removal. I haven't been able to take much Vit. C because of the stupid stool test I'm trying to get through, which limits the Vit C to only 500mg per day. I still have 3 days to go on that, assuming everything comes out okay and on time, lol, but since I've started the elimination diet I've had a problem with C instead of my usual D.

Soooo anxious to hear how Rachel's appointment went today!!

Wow, you all are fast! I feel like I've been gone for weeks and I really have only been away from the computer for a few hours

Ha, yep, it can move kind of fast here at times, lol. Still, this is nothing compared to how it was about 300 pages ago, lol.

I have seen people with just one ...

And this statement coming right after a post about breast feeding...

x

You are surrounded by the nicest people (with the exception of a couple of doctors, lol). That dinner sounds WONDERFUL!!!!! Wow!

Also worried about Evie!

Does anyone remember if HLA DQ2 is the one that is associated with the nerological symptoms? I remember reading that somewhere--I think.

I can hardly remember what genes I have, lol. Had to put it in my signature so that it would be handy if someone talked about it. So, sorry, I can't answer the question about neurological symptoms...but I bet I HAVE that gene.

Hello, can I come in?

....

If I live long enough, I may find time to read the rest of this thread and learn something LOL

Amy

Hi Amy, welcome! We eventually come back around to every topic since it seems that so many things factor into our health with this group, lol. You are a brave woman to attempt to go back in this thread, lol. We don't venture back very often, lol. We do have lovely dingo dogs who will come looking for you if you go back and don't return!

I don't have a specific problem with MSG, but try to aviod obvious sources and overload. I know that early on Rachel and several of the girls did some research, which I bet they've got book marked or perhaps can answer your questions a little better than I can.

So all this talk about dates made me have a dream last night about someone I haven't seen in over 21 years! We went on a date, lol. I was walking along and I bumped into him on the street, and then we were on a date. I think there was a cabin involved in my dream, lol.

Donna, Wow....hectic day....I was exhausted just reading about it. HN called me tonight....they wanna see me again....I guess I have test results there they never went over with me. I told her I got diagnosed with Lyme Disease.

Ha, yes, while I was waiting for my PT/Chiro appointment yesterday I heard Nancy that that a whole bunch of labs had come in so they were calling people.

I asked if her treatments worked.....what was his opinion?? He said as far as treating chemical sensitivities she is the best in this country....basically one of a kind. Well....I dont think I can ask for more than that now can I??

Yay, making ME feel better too, lol.

I asked him about mercury...how much of a role does it play if any??

He said that once a person has Lyme they become toxic. He said Lyme spits out toxins all over the body and depending on how well a person detoxes the burden can be worse for some than for others. A person with Lyme will accumulate heavy metals because they get backed up....they dont get detoxed.....they build up in the body and eventually the heavy metals reach toxic levels as well. Also the co-infections....parasites such as Babesia create their own toxins. In my case everything has backed up inside me....nothing toxic gets out very easily at all. The rise in toxicity results in chemical sensitivities.

He said mercury and Lyme are both intacellular and mainly cause the same kind of disruptions of cells and other stuff that is undetectable in any kind of test....even though they are causing plenty of damage. He said mercury and Lyme are basically buddies...they are connected at the hip. He said for a person dealing with both it gets extremely difficult. Lyme is harder to get rid of when there is mercury and mercury is harder to get rid of when there is Lyme.

Again...not very promising.

He said someone who has mercury toxicity is more sucseptible to Lyme....meaning the Lyme will have a greater advantage than it would in someone who doesnt have mercury toxicity. Also a person with Lyme is more suscepible to mercury toxicity because of the body being in a toxic state....the mercury and other heavy metals wont be going anywhere.

Again I say !!!

Even worse....he said that just last week they have made it law...that no Dr. shall treat a Lyme patient for more than 3 weeks with antibiotics.

This cannot be good for the future of those who have Lyme.

I know that this is something that has been going on for quite some time now....the controversy of Lyme Disease. I've noticed that on the Lyme boards they DO NOT post the names of their Dr.'s....to protect them...because these Dr.'s are treating Lyme Disease as a chronic illness and can suffer the scrutiny of the medical profession if they are "found out".

How scary is that??

Unreal!!! Unbelievable really.

Donna, how are you doing?

Not bad...still a bit light-headed here and there...ask me on Thursday though, lol...tomorrow I have my second quandrant done on the amalgam removal.

The people on both cruises I have been on were very helpful-, if it assigned seating it is especially nice because the waiters know you after the first day. I avoided buffets, for obvious reasons, and did have a lot of steak and potatoes. Sometimes that seems to be my life in a restaurant- but if there was anything they could do for you they would. Let the cruise line know in advance- even though they might not communicate that to the ship. When we got on the ship we went to check and make sure that they knew I had Celiac . I was really impressed with NCL they made me a special pizza, waffles , and tried to accomodate me as much as possible. Maybe I have to low standards , but I enjoyed the way they tried to make me feel at home. If you have a chance to have flourless chocolate cake go for it!

This is encouraging! The Princess cruises I've been on previously were also very accomodating, so have high hopes for this one. We couldn't get assigned seating...it was waiting list only, but fortunately I like me some steak and potatoes, lol.

x....

I couldn't remember if you had already started, but it seemed like I remembered it was right after the wedding...praying it really won't be bad at all! I say do whatever you can to pamper and take care of yourself...do nothing, sleep, watch favorite movies, whatever makes you relaxed and calm and feel better.

Changing subjects....kind of .... but because of my issues and my weight loss (97 and dropping), my monthly friend has now stopped. Sniffle. (And yes, I tested to make sure it was not for other reasons). I was shocked, but my mom said she was just waiting for it to happen, basically. I am losing my curves, have no fat, no boobs, and now, no period.......

Wow! That must be a little scarey! I'll be so happy when your testing is done! Thinking of you!!!

I voted that I react to both dairy and oats.

As you know, I am intolerant to many other foods, but those are for a different poll

Ditto, except that I don't know what they all are yet, lol.

When I was in my early 20's - I had allergy testing done. I was put on an elimination diet to rule out food intolerances. I was given a very specific list of foods I could eat. The list was very short, and included rice krispies (which I would not eat now!), nondairy creamer, grape juice, italian bread, a certain brand of potato chips, and handful of other things.... none of which seemed very healthy.

How does one successfully go about a *healthful* elimination diet?? I do not seem to have any food allergies (at least, according to RAST testing), but I do have numerous environmental offenders. I'm gluten-free now...and I'm still getting sick, constantly.

Would an elimination diet be a good place to start? My fear is I'll keep all the "wrong" foods and eliminate the good stuff, and never get anywhere in my search for better health. How do you know what stays, what goes, and for how long???

Can anyone help???

There are probably lots of variations on the elimination diet...I just started one last week that I got from my doctor. I'm basically eating what they consider hypoallergenic foods.

So for instance, chicken, turkey, lamb and some cold-water fish (which I'm limiting on my own because of possible mercury toxicity).

I can have any vegetable except corn, and very limited on startchy veggies like potatoes.

A little bit of rice is allowed...very limited though.

I can have all beans except soy.

I can have any fruit except for citrus, strawberries and dried fruits.

For beverages only spring water and herbal teas.

The only sweeteners I can have are stevia and/or a little fruit juice.

I can't have diet or regular sodas, no artificial sweeteners, no corn, soy, beef, pork, etc.

I stay on it for 11 days, then will add 1 food back. I can eat that food for the day I add it back, but not for the next two days afterwards...that's to check for reactions. Then if no reaction, I can add another food with the same pattern. She also suggests adding in things like soy and corn last just because of the gluten issue and the fact that a lot of people that have gluten intolerance also have problem with these two biggies.

I can type up the whole list if you want (but probably not until tomorow). I have to say that I thought I would miss sugar, but haven't really craved it like I thought I would. I'm on day 8 today, and I think my first food added will be BEEF, lol.

I haven't been through what you guys (or should I say gals ) have either, but I still like to try and be there for everyone.

Rachel has been sweet enough to educate me on some things too.....which is nice.

Still learning and bookmarking pages for further reference.....as long as my computer doesn't die.

I sometimes feel the same way...I don't have nearly the problems that many on this thread do, but I do feel like I might be headed there, so this thread is just a life saver for me! I don't know what I'd do without YOUR support!!!

Well girls and ocassional guys, I've tried to read the last 4 pages, but can't remember a single thing...THOUGHTS DINGOED BIG TIME...hopefully work will be slower tomorrow so I can reread. Some of the things posted by Rinne and Rachel were really good. I cut and pasted some of the mercury stuff into my running mercury info document.

I survived my day yesterday and the singing went well, lol It was a long day and there were times when I actually didn't think I would make it--almost asked them to just take me home. Several times I felt really light-headed and almost nauseated. The car was really hot, and I think that just didn't help.

First was church...had to be there by 7:30 to rehearse our small group song, then at 8:00 was rehearsal for choir stuff...service starts at 9:00, lol. Then our church is participating in the Beautiful Day ministries, and my friend and I have been helping them at the information table, so after the service did that for a while. Then it was off to my friend's house (ate in the car on the way over to her house), where we waited for her friends to pick us up...we went to see The King and I at the San Jose Center for Performing Arts...it was fun...very nice show. Then we went to dinner at Outback--they picked that place because they have gluten-free stuff for me!

I didn't get home until 6:30 and was just exhausted. Took my blood pressure cuz I could just tell it was down--91/55. I made sure I drank plenty of water throughout the day, and as hectic as my day sounds, I actually ate well, lol.

Laura, Very important question--what color was your dress for the wedding? I can't tell by the picture. Did the bridesmaids wear the same color?

I like to picture things

Yes, very important!!! Oh, and one of the things I forgot was to say that Laura's new picture is absolutely BEAUTIFUL!!! Wow!

After dinner had started, I went up with my mom to chat with Meg for a little bit. We went to walk away and she and my mom stayed back and then I realized my mom was crying. I just figured they were having a "moment" (Meg is like part of our family). My mom went out into the hallway, and she said, So you didn't see the table with the seating charts/gifts/etc on it then did you? (She is still crying). I hadn't seen it because I had been with the wedding party. Apparently, instead of doing wedding favors, Meghan and Brian made a contribution to the Celiac Disease Foundation in honor of me. They had apparently wanted to do something for me since I have been so sick lately, and so instead of spending money on favors that people don't really remember, they wanted to do something meaningful. So on one of the tables in the front, they had a frame with the announcement of the donation to the Celiac Disease Foundation and had a write-up about what Celiac was.

That is one of the neatest things I've heard in a long time!!!!!

Now, I know Meghan...and she is the sweetest and dearest person I know. I've met Brian a few times (since I moved away, I'm not home as much), but I just "feel" like I know him, because Meghan and I are so close. I love him just for loving Meghan (which I told him in my toast!)...but for him to be so concerned about me, his bride's best friend---that says a lot about him. They had told his family (and her family already knew, of course), but all wedding long, I had people coming up to me and telling me that they had heard what I had been going through and wanted to let me know that they were hoping I was finding answers and that I was being kept in their prayers. To hear that from people that I had never met (but felt like I had known them forever, because I've heard about them from Meghan)----made me cry some more too.

Okay, that might be the second neatest thing I've heard in a long time!

Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

Oh Evie!!!! Praying hard!

Shoot, it's too dang busy here today, so I only got to page 572...have to work. Try to catch up later.

I have been busy booking flight/hotel/car for going down to see dad Thanksgiving weekend. We will all be going down....leaving the evening of the 23rd and coming back in the wee hours of the 28th. Talked to dad for a few minutes this morning and he agrees with us coming down over that weekend and Mitch will only have to take one extra day off w/o pay.

Wow, great that you'll see him for Thanksgiving!

I find I really have to work at getting small tasks done, chores are like mountains and I have to work myself up to climbing them, somedays even the smallest task seems like it will take too much energy and I let it slide.

Yes!!! My house hasn't been cleaned in months, lol. It's overwhelming to even think about it!

hI,

hAVE COME IN THREE QUARTERS WAY THROUGH THIS THREAD. DONT HAVE ACLUE IF YOU MEAN ME BUT MY NAME´S DEBBIE. SO WHeRE DO WE GO FROM HERE??

No problem...most of us came in at some point other than the beginning...just ask any questions you'd like.

Donna....it actually sounds fun and relaxing. I LOVE singing....although I dont exactly have a "made for choir" voice.

Is it church choir? When I was a kid I loved singing the church songs. I went to St. Martins...its that Catholic School right next to Camino Medical. My favorite part about going to church was singing....and I was LOUD. We used to actually get a grade for singing and I always got a "C" or worse.

I didnt think that was very fair cuz obviously I showed great enthusiasm for it.

Yep, church choir, and it is fun and I really like it, but not really so relaxing anymore, lol. The rehearsals would be more fun if I didn't have to wake up so early in the morning.

Okay finally caught up....wasn't easy either...lost my computer connection twice, lol. Anyway, now I gotta go, lol. Need to learn a choir song before tomorrow...haven't listened to it until about 20 minutes ago. The small group I'm in is singing tomorrow too, but fortunately I KNOW that song. I do have Mission Impossible 3 to watch...my mom loaned it to me, so that's my afternoon/evening...watching MI3 and learning a completely foreign choir song, lol.

This is the stuff that worries my mom....because I dont take care of anything in timely fashion anymore. It seems like it would be easy....to just get out the bills and pay them. But its not easy anymore. I cant explain it but some things just arent so easy anymore.

Wish I didn't understand this statement so well.

you should be optimistic- whether or not you feel the effects today you felt some yesturday - so thats a great sign. You just have to hope that with each session the relief lasts for longer periods of time.

I think it sounds like good news donna

Yep, this is exactly why I choose to be optimistic.

I'm 43 ... I was just judging by the fact that your youngest is younger than my youngest ... of course, if it weren't for my health problems, that wouldn't be the case!!!

Ha, I'm 51, but never been a mother except to two little dogs, lol...wouldn't know how to be the mom here.

I don't really have a point ... it's just more scientificness that might not be related to anyone here!!! I think I'd really like working at Starbucks .... I don't know many people here yet, it'd be a great way to meet them!!

No point needed here, lol...I just like reading your posts (along with everyone else's)! Interesting conversation you had with that doc!

Hi Ryan, good to see you again!

Morning everyone!

Thanks the the links...I've bookmarked them, but may have to wait until Monday when I have a faster connection to the internet, lol.

Nothing new from me. Had another PT/chiro session yesterday and my neck actually had a little better range of motion afterwards...course it's all gone now, lol. Doc wants me to put heat on the muscles on that side of my neck for 10-15 minutes and THEN do my stretches/exercises, so we'll see how that works. I'm going to choose to be optimistic about this, lol.