Jump to content
  • Sign Up
Celiac.com Sponsor:


Celiac.com Sponsor:

Archived

This topic is now archived and is closed to further replies.

Rachel--24

Omg...i Might Be On To Something

Recommended Posts

Lime green car......I can totally see one of those for you.....especially since you talked about it last summer/fall. :)

OM gosh- I saw one yesterday and it was SOOOOOOOOOOO Ugly. dodge daytona- LYME green :ph34r:

Ahhh!!!!!!!!!!

Jin- you would love Salem. Full of history, cool stores lots of Wiccans and few ticks :P I actually just saw Laurie Cabot the other day- i went in her store. She's kind of controversial in the Wiccan community here because she declared herself The Official witch of Salem and i guess there was some controversy amongst her followers.

She has a great book that is Wiccan based, but regardless of religious preference I think it's awesome. It's about celebrating the seasons.

Here's a link to it: Celebrate the Earth

Share this post


Link to post
Share on other sites

Donna....lots of hugs for you today. Sorry about all the bathroom trips....stupid bugs and their "cycles". :angry:

It could also be something you're taking....its just so darn hard to figure this stuff out sometimes. :(

I hope you get to leave early and that you feel alot better tomorrow. :)

and yeah...thats the picture I saw before!! You do look great in that picture. :)

I had the crooked mouth thing going on for awhile too....apparantly it was from all the imflammation and swelling I had while still eating normal food, drinking sodas and everything else that I was doing wrong. :rolleyes:

Its better now....I dont have any pics to prove I was once lopsided...but I really was. ;)

I dont really have any pics from the last few years since my life pretty much stopped. :(

I used to take my camera everywhere...I seriously would not leave home w/out it. I always loved pictures but then when I started scrapbooking I was somewhat obsessed...I needed to take pictures of EVERYTHING....I constantly had ideas for new pages. :lol:

Now I dont go anywhere and I have no reason to take pictures....its kind of sad. :(

I mainly need to get better from my chemical sensitivities to be able to venture out more. It even keeps me from scrapbooking....I would probably need to wear a mask if I wanted to scrapbook since all the supplies will get to me after awhile. :(

Share this post


Link to post
Share on other sites
Ok, I went and read the article. It is interesting. I wonder why they say babs is so rare and that lyme is more common. Don't those two go hand in hand a lot?

Andrea....its not rare...just rarely TESTED for. Its the most common co-infection found with Lyme...I've read that some Dr.'s think its present in more than 75% of Lyme cases.

Its also one of the biggest factors in why some people cant recover from Lyme. Its because they arent treating the Babs...you will not get better from Lyme treatment if you dont take care of the co-infections.

Share this post


Link to post
Share on other sites
Is that coming up next month sometime?

Yeah...sometime in June....no date yet.

Share this post


Link to post
Share on other sites

That picture is funny...I HATED my hair...my hairdresser insisted on cutting it short and then for the wedding the hair person they had insisted on POOFING it up. :lol: I'm not really a poofy hair person. :P And the makeup...I didn't do that either...they had a makeup person...wish she would have put some on my neck. :lol: My face is darker than my neck anyway, but at least it could have been closer in shade. :P

I know what you mean about not doing anything. I love to paint, and had to stop because the chemicals were really getting to me. :( The only time I ever get pictures taken is when there is some event at church or when I go on vacation. I don't even have one of me on my last vacation...hum, okay, maybe there is one of me on the raft floating down the river in Jamaica...I'll see if I can find that.

Otherwise my "usual" avatar (you know Donna = :lol: ) is the most recent one I have...that was from a year ago March.

Share this post


Link to post
Share on other sites
Rachel,

Are you at home today or just real late to work? :)

Andrea...I'm on lunch. Its my normal lunchtime. :)

I was late this morning because I could be. I usually have orders which need to go out by 6 am...this morning I didnt have any going out till 7....so I lagged a little. :P

I havent even felt like calling in sick for the last 3 or 4 weeks now. :)

I'm on a roll....hopefully Dr. S. will be convinced when I see him next month. :D

Share this post


Link to post
Share on other sites
Andrea...I'm on lunch. Its my normal lunchtime. :)

I knew it was your normal lunch time. :) Just saw a late post for you this morning on the other thread. Course if you were at your mom's by then then it wouldn't have been so late. I was thinking of the commute time. :P

I'm so glad you've been feeling better and am waiting along with you to see what Dr. S has to say. Do you see him late June or into July?

Edit.....if I wouldn't have deleted everything I would have seen that you said next month. :ph34r::lol:

Carla,

Thinking about you and Chloe today. Hope the appointment went/is going well. Can't wait for your update either.

Share this post


Link to post
Share on other sites

Donna- sorry about the uggy day. Hope it calms down for you.

We must compile a Rachelville Dictionary and phrase book!

In-bare-assed: to be caught in a sauna with very little clothing on and brain too foggy to remember how to open the door.

Spinached: to be in so much much pain that one is willing to take a frozen bag of spinach to bed even though it may melt and explode causing serious linen and potential sleeping partner problems.

To rachel (verb) : eat way too much of even though you know you shouldn't (as in Donna would love to rachel a Bumble bar.)

F. babs: Babesiosis

HARUMPH: An expression of frustration

What am I missing?

Share this post


Link to post
Share on other sites

Dear Donna,

I love both of your pics! You look so pretty in both! I hope you get to go home early to rest some. That would help. There are times I get a lot of rest, and other times very little.

Dear Bev,

Thank you for the info! I think I would enjoy Salem a lot! I am not sure I could handle the psychic energy, though. All of those poor innocent souls murdered like that! I think Laurie Cabot is great for being so brave about Wicca. Most of us have to hide. It would be nice to not have to be so secretive. You are supposed to be able to be proud of your faith, but Wicca is something most people do not understand, nor do they care to. I could not get the link to go anywhere. I will Google it.

I think your dictionary descriptions are perfect! :lol: I love them! Let me see...I am trying to think of anything you could have missed. Oh, I know! Scientificness, and nerdily. We cannot forget those!

Sincerely,

Jin

Share this post


Link to post
Share on other sites
To rachel (verb) : eat way too much of even though you know you shouldn't (as in Donna would love to rachel a Bumble bar.)

Also refers to medical treatments, etc., etc. :P

I don't know if I still have the "old" rachelville words or not. :unsure:

Share this post


Link to post
Share on other sites
.....

Jin- you would love Salem. Full of history, cool stores lots of Wiccans and few ticks :P I actually just saw Laurie Cabot the other day- i went in her store. She's kind of controversial in the Wiccan community here because she declared herself The Official witch of Salem and i guess there was some controversy amongst her followers.

She has a great book that is Wiccan based, but regardless of religious preference I think it's awesome. It's about celebrating the seasons.

.....

That reminds me of a workshop I did with Starhawk, it was a country setting and outhouses were available and a request not to use the indoor plumbing made. Starhawk did not want to use the outhouses as she was afraid of ticks, I asked her whether she had a spell for them. :ph34r::lol::lol:

Peanut butter, if peanuts are okay for you the best ones are the Valencia, they are grown in New Mexico and are not subject to the same kind of problems with mold.

............

I havent even felt like calling in sick for the last 3 or 4 weeks now. :)

I'm on a roll....hopefully Dr. S. will be convinced when I see him next month. :D

That is such great news.

Sorry I forgot about the floater question, mental-pause brain, :lol: I was having a real problem with them last year. I kept seeing birds flying at the corners of my eyes but after I did the salt/C they went away and haven't been back since. I was also having blurriness that would come and go, as if I was seeing through glasses that had vaseline smeared on them.

Share this post


Link to post
Share on other sites
Donna- sorry about the uggy day. Hope it calms down for you.

We must compile a Rachelville Dictionary and phrase book!

In-bare-assed: to be caught in a sauna with very little clothing on and brain too foggy to remember how to open the door.

Spinached: to be in so much much pain that one is willing to take a frozen bag of spinach to bed even though it may melt and explode causing serious linen and potential sleeping partner problems.

To rachel (verb) : eat way too much of even though you know you shouldn't (as in Donna would love to rachel a Bumble bar.)

F. babs: Babesiosis

HARUMPH: An expression of frustration

What am I missing?

Donna, hope you feel better too.

Bev, :lol: forgetting:

Heinous: we need Susan for a full description

Share this post


Link to post
Share on other sites

Hi Rachel,

It might be wrong but, I noticed that you are consuming a lot of processed foods. Have you ever thought about cooking with plain things? such as green vegetables, turkey/fish/meat, eggs..consuming nuts instead of popcorns..I love ice cream, but since my husband has gluten intolerance, I dont eat ice cream as much as I used to...for snakcs, now I eat nuts, they much healthier, and you know what, I dont even gain wait.. people always say, oh they are high in calories - so what, they are not simple carbs, more dangerous! My husband quit eating fruits ans sugar/honey (simple carbs) and this helped him so much!

Share this post


Link to post
Share on other sites
How about the Rachelville classic--scientificness! :D

Yes, we can't forget that one. :)

Share this post


Link to post
Share on other sites

Hello Moonlight, welcome to our epic thread!

Thank you one and all for the comiseration :P I didn't go home early afterall...a big project came in and that kept me busy enough so that I didn't think about how I felt. :lol: Glad it happened late in the day though...the same project early on would have finished me off completely. :P

Rachelville dictionary :lol:

Oh, and I HAVE racheled a chocolate bumble bar...three in fact, in three days--1 a day...not all at the same time, but 1 whole one throughout the day. :ph34r:

Gosh, wonder why I feel yucky!? :ph34r:

Share this post


Link to post
Share on other sites
Gosh, wonder why I feel yucky!? :ph34r:

Now the truth comes out. :P Course it could have been something you're taking but I would suspect those bumble bars since they are made with things that don't like you. ;)

Share this post


Link to post
Share on other sites
Now the truth comes out. :P Course it could have been something you're taking but I would suspect those bumble bars since they are made with things that don't like you. ;)

Oh racheling Bumble bars :ph34r:

Hi Moonlight! Welcome!!!!!!!!!!!!

Share this post


Link to post
Share on other sites

Hi all....

Been reading and trying to keep up. We were out of town for the weekend, so I am just now finally having the chance to sit down and share about my last appt with my LLMD.

So, the sad news (for me) is that my biopsy samples that were sent out (from Sept 06) to MDL were negative for Lyme/co-infections. Its similar to Celiac biopsies...negative doesn't mean its not there. But, still, frustrating for m, because I really just want an "official answer." She was actually very surprised, too.

Good news is that I tested negative for HHV6 (both the a and b variant)....the hhv6a is potentially linked to chronic fatigue syndrome. I was happy that I was negative for that, considering I'm highly positive for CMV and EBV, and are in the same family.

She said I am progressing much better than she thought I would, so that is wonderful news. She does a mini physical each time we are there, and she said it was much better than last time.

She started talking about something and I was confused....she said, for the babesia (no, she did not say "f. babs") I said, what are you talking about. She said that she is pretty sure that I have either babesia or bartonella, but is leaning towards babs. She said she's thought this for some time, as thats why they put me on the zithromax. I apparently looked like a deer in the headlights and she apologized that this hadn't been properly conveyed to me. She said my clinical presentation is pretty consistent with it, esp with the severe pain in my neck. We talked a lot about that, because its been so bad, for about 5 days....just so horrible. She said that although my "gut" is doing better, I am obviously still having trouble with it because of my neck pain. (which, is true...it all comes together in a flare). She described two things that are going on. 1. the gut and neck are related/connected nerve-wise, which explains why I get pain in both. and 2. she thinks as a result of all of this, my lymph nodes are swollen (not draining)...which is apparently common with babs, also. She pinpointed the places where I have such tender points, and they are all lymph nodes. The good news is that she said the lymph nodes on my front (chest) were considerably better than last time.

So as a result of all of this, here is our plan:

continue the omnicef. up the zithromax from 3x to 5x a week. switching from diflucan to nizoral because she said its not working for me anymore (obviously!) add a sequence of drugs that act only in the digestive track (versus being absorbed) to work on clearing everything out of my gut (3 days of Alinia, 5 days of Rifaxamin, X days (can't remember) of vacomycin. When that is done, I start on a month of Asacol, which is an ulcerative colitis drug, to see if any of this helps. I'm being re-tested via Igenex tomorrow, and then we'll retest after all this. I'm also starting to take fiber to help the toxins bind and get rid of them. I'm continuing to take the antiviral (been on it for 1.5 weeks now), and continuing with the Vit C IVs (she said I can drop to 1-2x a week, depending on my schedule, instead of the 2x a week. She wrote me a prescription to see a physical therapist to start working on my neck, back, tender points, etc. to get the lymph nodes to drain and start to relieve the pain. Not sure how I'm going to fit in 1-2 IVs, and 2x weekly PT sessions, plus working, plus my sister's wedding this weekend....helping Eric's parents move the weekend after.....this makes me tired :).

It was a good app't...45 minutes...had lots to talk about, etc. It made me feel good to know that I am doing well... but its hard because I still don't feel like I'm "better" etc.

So...thats my update. Hope all are well...sorry it took me a little bit to respond. I was overwhelmed with the app't, plus the travel.

xoxo

Share this post


Link to post
Share on other sites

Yes, I have to fess up!

Okay, new avatar...this was taken over 20 years ago! I was living in Hawaii and a friend wanted to do a hike. Wasn't too strenuos he said. HA! This is the beginning of the "hike". We're heading down before we can go up...we ended up on top of a mountain overlooking one whole side of the island. It was spectacular, but boy was it hard...the only picture I have of me at the top is me collapsed. :lol: Anyway, that's me in the front, back when I was young and skinny. :P

Share this post


Link to post
Share on other sites
Hi all....

Been reading and trying to keep up. We were out of town for the weekend, so I am just now finally having the chance to sit down and share about my last appt with my LLMD.

Sounds like a pretty productive appointment and YAY on the improvement! :D

Your upcoming schedule sounds tiring just reading it. :)

I'll be looking for updates on the Igenex test as well as how you are doing.

Hope your finger is doing better too.

Share this post


Link to post
Share on other sites
Okay, new avatar...this was taken over 20 years ago! I was living in Hawaii and a friend wanted to do a hike. Wasn't too strenuos he said. HA! This is the beginning of the "hike". We're heading down before we can go up...we ended up on top of a mountain overlooking one whole side of the island. It was spectacular, but boy was it hard...the only picture I have of me at the top is me collapsed. :lol: Anyway, that's me in the front, back when I was young and skinny. :P

And I though Hawaii was on the flater side.....aside from the mountain. I've never been.

Share this post


Link to post
Share on other sites

Hi laura and everyoneelse- Sounds like a productive appointment, but I'm sorry you're still feeling crappy. The plan spounds like a good one.

I was actually thinking today about how little people mention joint pain on this thread- then you mentioned your severe neck pain. There are days when I feel like every CELL in my body is screaming!

Share this post


Link to post
Share on other sites

Bev, my neck/head/shoulder/upper back pain is a classic sign that I'm in a flare. I also have tender spots all over the rest of me that are worse during a flare...inside of my arm (near my elbow), on my butt, my lower back, places on my legs...etc. My hands get super stiff and painful too.

Yeah the muscle/joint pain is one of the worst for me. :(

xoxo

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.

×
×
  • Create New...