Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Rachel--24

Omg...i Might Be On To Something

Rate this topic

Recommended Posts

Elisabet,

I'm not Jin or Rachel, but I say your English is fine! :)

Good luck at your appointment! I am sure you will do fine. Just take a deep breath. Shots are not that bad. They hurt more when you look, though.

Unfortunately I HAVE to look, lol...I'll be giving it to myself and it might be kind of hard if I don't look. :lol:

Share this post


Link to post
Share on other sites

I sitll havent heard from her and im off to go shop, i cant beleive how good im feeling today. But once i get back and i talk to her, i will post. Im kinda figuring no news is good news, right lol.

Jin,

I will help ya, ill send u the link and everything this evening when i have more time. Well when i get back from my sons basketball game. Maybe i should say son since we dont go to court til tuesday lol

paula

Share this post


Link to post
Share on other sites
I wish you could have seen Bev while you were in NYC. That would have been neat to meet up with her. I can see why you would want to get an early flight, though. There is no place like home! Did you get to do anything else while in The Big Apple?

It was actually more because of her schedule than mine .... I would have hung around longer to be able to see her, especially since I might not have to go back up there .... but I'm not going to update you on HER appt., LOL.

Maybe that is why I have felt so rough. Could I be relapsing after the abx? That would make sense. I felt better as far as the nausea went while on them. My colon went crazy, like my body was trying to flush something out.
If you have Lyme and were on an abx that hits Lyme, it would make sense that you would feel worse again when you get off it.

That's what we're watching for with me this month. If I decline at all, we'll have to get back to heavier abx.

Carla, probably a good idea to clean your diet up as you approach the home stretch!!!
It's really not bad, but I used to be an absolute health nut -- juicing, 50% raw food, etc. When I get my braces off Feb. 7th, I can go back to more salads, etc. In the meantime, I can switch my latte to a veggie juice since I can't have dairy on Cowden. I've always thought dairy was a source of toxins and a burden on the body, but I needed the calories. I can clean it up in bit in that area ....

you both should excuse my English.

Your English is fine! I was just hoping that Lisa's second language was English because I couldn't fathom the idea of acupuncture in the private place!! :lol: It seems that Lisa has mentioned being Hispanic ...

Share this post


Link to post
Share on other sites
Have you heard of health being like a bathtub?

Hey Lisa :)

Yeah I've heard this analogy and also the bucket analogy. I use the bucket analogy to explain to people why I'm so freakin reactive to everything. My bucket is overflowing!! :o

Sounds like you're learning some things from Dee...I really like her...she always takes the time to explain things. I hope you're asking lots of questions. :)

Your mind should be clearer now that you're off the ice cream. ;)

I don't have time to post in this thread tonight but I should be back posting soon, at least to an extent... just replied to a couple other posts on this forum so figured I'd leave a quick reply here...

Hi Charlie!! :)

Also, does anyone know if you have blood drawn on a Friday for Igenex, can it just be refrigerated over the weekend until they can ship it? Or does it actually have to be drawn on a Monday, Tuesday or Wednesday?

No...it cant be drawn on Thurs. or Fri...has to be early in the week. My Dr.'s office is 5 minutes from Igenex...it goes straight to the lab after pick-up and it still cannot be done on a Friday.

So now with these changes, I need to see if I am or can move mercury better, see what else my body needs to get balanced, recheck the malabsorption to see if there is any improvement. Also I want to check all the foods, meds, parasites, detox pathways, etc. with Dr. E, and try LED to see if it helps. Also figure out what will support my liver enough. I want to see if I need to check for or try treating bart, and maybe check my CD57 levels.

Sherry

Sounds like a good plan Sherry. :)

I had a high malabsorption index last spring, and I know that I saw a piece of tapeworm awhile back. Now you would think....I would be thin, right?

I think it has alot to do with the parasites...also the fact they are causing leaky gut and that leads to even greater inflammation.

The first couple years of my illness I was gaining weight...it was highly unusual for me and the weight did not seem like normal healthy weight. It seemed like I was full of fluid (edema) and had inflammation all over. It kind of bulked me up and people assumed I was very well nourished because I appeared to be a healthy weight.

I kept saying that I felt something wasnt right..that if I were to lose all this water weight and swelling I would probably be skin and bones.

When I drastically changed my diet thats exactly what happened. I dropped down to 94 lbs. but I felt WAY better. This is when people started to be concerned about my health...2 years later. :rolleyes:

I think it very much has to do with immune reactions, inflammation and everything that contributes to that...parasites, yeast, foods, etc.

I know that I still have malabsorption (hello...tapeworm! :P ) and Its not easy to put on weight w/out also eating things that cause inflammation and fluid retention.

I lost a lot of weight after going gluten-free, SY, CF, and DF. I lost about 20 pounds in 2 months. I think for me i had a lot of inflammation and the food sensitivities were making it worse. This could be the case with the tapeworm - causing inflammation along with some of the other issues.

Yeah...I agree!

Share this post


Link to post
Share on other sites

Carla,

FANTASTIC NEWS!!!!! I am so entirely thrilled for you and Chloe!!

April,

Sounds like you've found yourself a great doctor! :)

Kassandra,

I hope your appointment goes well today.

Paula,

Did you have an appointment today?

Everyone,

Yesterday I went to get blood drawn for my LLMD appointment in 1 month! I can't wait. We also asked LabCorp to send the results of the bloodtests I had two months ago to the doctor again, because he hadn't received it. While we were doing this Mom had an awful cough. I can just see her walking into the fedex place with a package marked with a huge "BIOHAZARD" sticker and coughing all over the employee. :lol: :lol: :lol:

We went to the dentist today, just to have our teeth cleaned, and now I feel awful! TMJ's acting up, neck and shoulder (and armpit :blink:) pain. There was a lot of blood (no cavities, but that doesn't mean that the highlight of my day is brushing my teeth :P) so I'm thinking that my lymph system is rather upset at the sudden dump of bacteria. :unsure: The parsley helped a very little. Lots of water for me.

Share this post


Link to post
Share on other sites
Dear Rachel

In one of your posts you mentioned a skin problem that you had,is it gone now?

Elisabet,

I dont recall mentioning a skin problem? I never really had any significant skin problems although my skin has been affected by all the toxicity in my body. My skin used to burn and tingle alot...especially my upper body and face. My skin also gets puffy (edema) and sometimes pale.

Sometimes my skin looks really unhealthy to me (blotchy/pale) and other times it looks very healthy. It can literally change in a matter of minutes and if its bad one day...the next day it might be better. :huh:

It really seems to depend on how overloaded my system is with toxins.

Share this post


Link to post
Share on other sites

Donna,

You'll do great! Just think, I had no instruction, and I can do it! :lol::P

Carla,

Yay! I'm glad you'll hang around. :) We'd miss you too much!

Sherry,

That's great you've lost weight! I have in the past couple weeks, but I think that's mainly because I have really been so nauseated that I don't eat a lot. ;) It is the first holiday season I haven't gained any weight! :lol: I didn't think it was possible. :rolleyes:

Everyone,

I had the appt and everything went great. Dr. Chang (the hematologist) wants to leave the PICC line in for another couple of months so we can do more iron iv's in a few months. Also, apparently the insurance company is going to reimburse us for the iron IV's! :o :o He said that we should bill them for all the time his office spent on the phone with them, and most importantly "his" time! He told my mom, "I'll split it with ya!" :lol: :lol: It was SO funny!

He is going to get blood work back on Wednesday. We did tell him about Dr. H and he said "you have to be careful, they're great salesmen!" <_< But then he said, "Wait, should I be on his side?" And my mom said that he was great, and he didn't try to sell us ANYTHING! We told him about the babs and he said he doesn't really know anything about it, so he trusts that we're doing the right thing. :)

I am very happy with how the appt. went. I have a phone consult with Dr. H (himself, not the PA) today at 2.15. Then on Feb. 9th I am going to see him again at his Malibu office.

Another thing, Dr. Chang said he asked the surgeon if he should just "yank out the PICC and if it doesn't come out, should I pull harder?" LOL! :lol: Then the surgeon just laughed apparently. It was SO funny...we were laughing. :P:D

Yay!!! Great day so far for appt's...AND they didn't have to poke me to have my blood drawn, we used my PICC! :)

Share this post


Link to post
Share on other sites
I am very happy with how the appt. went. I have a phone consult with Dr. H (himself, not the PA) today at 2.15. Then on Feb. 9th I am going to see him again at his Malibu office.

Glad your appointment went well and also that your mom is on board with the treatment and diagnosis. I'm sure that helped. :D

:lol::P:lol: Discussions at your appt.

Share this post


Link to post
Share on other sites

Carla.........JUST THRILLED WITH YOUR NEWS AND THAT OF THE KIDS. SO NICE TO SEE A SUCCESS STORY.

HOPE BEV HAS GOOD NEWS TO REPORT TOO. SORRY YOU 2 COULDN'T MEET.

JUDY

Share this post


Link to post
Share on other sites

Birdy,

:lol: on the biohazard/cough thing. :P

Kassandra...do you mean for the phone consult??? They didn't call? Wow, I wonder if the days got mixed up. The rest of your day sound great though.

Everyone,

Well, I survived the shot training, lol. AND, I got to meet Rachel again, and neither one of us was passed out. Yay. :lol: It was a close call for ME though. :P

I did the injection myself, and it was great...didn't hurt or feel a thing...except just a slight weird feeling, but it wasn't pain or anything, just a weird "gosh there's something in my leg" feeling. :lol: Then as soon as I was done I started feeling sick, and knew if I didn't recline a bit that feeling would turn into a "blackout" feeling. :P So, it was close, but I was able to recline and all is well. Took me a couple of minutes to compose myself, then got to see Rachel again at the reception desk.

I'm hoping my insurance will cover at least part of the B12...it's expensive, lol.

Share this post


Link to post
Share on other sites

Well i am no better off then i was the other day, nothing showed up on any of the test but that my liver enzymes were up some, but she said it was from detoxing and from the candida. Nothing showed in my stool testing.

Maybe candida is just from being celiac, I dont know.

I guess i wait for the lyme test to come back.

I have had an awesome day today and im not going to let no answers get me down.

paula

thanks for not posting too much today, maybe i can catch up before i head out to the game.

Share this post


Link to post
Share on other sites
Everyone,

Well, I survived the shot training, lol. AND, I got to meet Rachel again, and neither one of us was passed out. Yay. :lol: It was a close call for ME though. :P

I did the injection myself, and it was great...didn't hurt or feel a thing...except just a slight weird feeling, but it wasn't pain or anything, just a weird "gosh there's something in my leg" feeling. :lol: Then as soon as I was done I started feeling sick, and knew if I didn't recline a bit that feeling would turn into a "blackout" feeling. :P So, it was close, but I was able to recline and all is well. Took me a couple of minutes to compose myself, then got to see Rachel again at the reception desk.

I'm hoping my insurance will cover at least part of the B12...it's expensive, lol.

Im glad u were able to compose yourself. I probably would of just fainted lol. ANd im glad u got to see rachel again and that neither of u were asleep lol.

Is it cheaper tho to do it yourself then to go in once an week. Im cusious on how expensive they are. My nd did say they might benefit me some, but i told her i had to get back to her, of course i have to research it lol.

paula

Share this post


Link to post
Share on other sites

JULIE,

the specialist you are going to tommorow does she do anything to test for mold toxicity, if so i might have to make an good effort to see her sooner then i thought. Please dont forget to post how it goes tommorow.

paula

Share this post


Link to post
Share on other sites

Well, it turns out the Dr got really behind and then he had to catch a flight to LA, so we didn't get to talk to him; we talked to the PA instead.

We are going to start treating Babs with Mepron and Zith. She wants to see a copy of the newest blood work from the Hematologist for the anemia. She thinks that may be the cause of my anemia, babs. That would be great if it was. She said not to do anything with my periods for now because we don't need to add extra stress to my body. Instead we will start to treat babs and see what happens over time.

Bartonella is another possibility because of my symptoms, but we're going to start with Babs first and see how that goes. She gave me a script for Ambien because of the sleep, but it's the lowest dose and we're hoping that will help with the sleep issues.

Donna,

Insurance should cover the b-12. Heck, if our insurance company covers it, yours definitely should! :lol: I think it's about $36 for 2 months of shots. I think, I could be wrong though.

I hope you don't pass out! That has never happened to me, but then again I think I am so used to getting poked and prodded, lol.

Share this post


Link to post
Share on other sites

The shots, lol. The Methyl B12 vial was $85.00, the B complex (it's a mix of the two) was $39, needles/syringes were $24. That's enough for 30 injections...if I do one a week that'll be 30 weeks worth, if two a week then only 15 weeks. The doctor said I could do either 1 or 2 injections per week.

Maybe next time I'll ask if I really need the BComplex, lol.

I know I read somewhere about prescription vitamins being covered, but not sure if it was my insurance stuff I was reading or my flexible spending account stuff. Either way...I'll submit it to the insurance company first then if they won't pay I'll submit it to the FSA people. They SHOULD pay for the teaching part which was 40. :P

I'll be fine at home with the passing out thing, lol. I think if I'm at home in my comfortable surroundings with a couch handy I'll be fine. :lol:

Share this post


Link to post
Share on other sites

Paula,

Sorry about the results. Hopefully you'll get some answers soon.

Donna,

Glad you didn't pass out!

Kassandra,

Glad you're able to get some Ambien. Hopefully it will work for you. Off to finish dinner. :)

Share this post


Link to post
Share on other sites

Donna,

Ouch! That seems expensive to me! Mine came pre-filled. Do you have to fill yours? Can you get them through the Pharmacy I got mine at...Lee Silsby Pharmacy. They were great about everything. I think it's a compounding pharmacy.

So, are you getting 2 kinds of b-12 in one shot then? I think I only get methyl b-12, but I'm not sure.

Everyone,

So, interestingly enough, I don't have a yeast overgrowth! :o I am shocked! My tests came back totally normal!!! Yay!! But, they are going to have me go on a starch, sugar free diet. :( I am bummed, so tonight I am going to make my last batch of flourless almond cookies (which are to DIE for! LOL!).

Share this post


Link to post
Share on other sites

Hi. I get my Methyl B12 in pre-filled shots at a compound pharm. One months worth for 80 bucks and B12 is not covered in my insuance cuz it is a vitamin. It's very expensive. Comes out to 20bucks to give myself a shot.

Hey and I was able to do the math.LOL:o

I can't tell if it's helping me anymore. It use to give me a little energy but now it's not. I may discontinue after seeing the llmd.

Share this post


Link to post
Share on other sites

My experience with gua sha has been quite positive overall. It is really amazing how much improvement there is in my skin's response. It shows me that while one time is beneficial, several once a week or so treatments could be better if there is evidence of problems.

Here's a couple of sites about Chinese gua sha. Notice that this technique may impact the fibrin issues we've talked about. Also it is usually done by folks here at home on themselves, so it can't be that hard to learn. There's a book on it, mentioned on these sites.

It is supposed to really help stagnant lymph systems. Since it is non-invasive, and not a supplement, it seems like it could help some of you who are very sensitive. As I read about it, it reminds me of skin brushing, but is more intensive of course.

http://discoveringwellness.hdmenterprises.com/gua_sha.htm

http://www.guasha.com/

As I read this, I thought of several of you.

Sherry

Share this post


Link to post
Share on other sites
Levaquin took away my remaining GI and cognitive symptoms. It was truly a miracle drug for me!

You've been on abx for 7 years and relapse when you get off them, right? I really think my LLMD would put you on Cowden .... that's what he's using to successfully get people off abx. It's a 6 month protocol, then, if needed, another few months of a limited version. It's about $2000 for the six months .... which he pointed out is significantly less expensive than most end up paying for Lyme treatment (he said about $70k for Lyme treatment for most).

Cowden is big on detox issues, including metals .... it seems that it would be beneficial for you. It even has you take enough magnesium to have three bowel movements per day. :) It also has adrenal support. I'm impressed.

I can't speak for my LLMD, of course, but I know he's been using this for people who are doing well and relapse after abx. I know you don't always feel well, but you seem to be doing great .... still working, etc.

I'm thinking it's inflammation issues ..... parasites might play a big role in causing inflammation. I think health is the goal to strive for, then when you reach it your weight will stabilize. I wouldn't keep the parasites because you're worried about gaining weight.

Carla,

That is all helpful info, thanks. My relapses seem to be a combination of the immediate and longer term relapses. I don't always have the immediate relapse but sometimes I do. Last winter/spring was my longest time without relapse (4 mo), but I wasn't on anything to maintain other than transfer factor and samento, plus general support things.

So I think it is important to eliminate bart as the cause of relapse. And then, I think the Cowden looks good if my LLMD agrees. I am concerned about the adrenal support as when I have done that it has made me jittery and worsened insomnia. Maybe the protocol can be adjusted.

Yes, overall, I do quite well, but I really want to get rid of these unpredictable dips--and try to determine the cause. The last one of 3 weeks last month was extremely frustrating.

Nope, I don't want to keep the parasites, and also want to be wise about how to get rid of them. If the tapeworm has survived my pineapple diet/pumpkin seeds, plus 2 weeks on the humaworm, its a hardy animal indeed! I can't find any information about whether they always pass somewhat intact or if it can get broken up into unrecognizable bits.

Sherry

Share this post


Link to post
Share on other sites

Sherry,

Thanks for posting that info! I am going to find someone here. I think I would benefit from that.

That lady's neck in the video - looked like it hurt! She said it didn't. I bet I'll be RED all over I am so toxic.

April

Share this post


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

×
×
  • Create New...