Omg...i Might Be On To Something

[aprilh]

Sherry,

Sorry for the bad luck day. Bad luck comes in 3's so you should be good for a while.

Everyone,

I called that LED referral and the lady that does it is no longer there!!!! Darn! Thought I found someone. I left my name and asked if they knew of anyone who does it to call me.

I too, LOVE the charcoal. I was scared to take it at first, just because I react to so many things - but It is GREAT! I will have it on hand forever.

[aprilh]

I have to admit, I have trouble following the jumbled up paragraph. I just helped one of my co-workers rewrite an important email yesterday because of that very reason. The recipient was having trouble following what it was she actually needed. So, we broke it down into paragraphs and that seemed to help.

[mftnchn]

Thanks, glad to know that I'm not the only one. I have had to skip posts sometimes, and I do really want to follow and understand everyone on this thread so I can contribute where I can.

The other thing that really helps me is typing with normal use of capitalizations. With all lower case, I can't see the beginning and end of sentences (which also helps break things up for me), and I just get lost in the post.

[Green12]

  mftnchn said:

One is called Good N Natural, and it is 260 mg per capsule, and the other is Nature's Way, and it is 280 mg per capsule. So my dose is 3 in the evening, and I can also take extra when I need it for symptoms.

I think this is one supplement that is pretty forgiving, more just absorbs more.

It is so super that it is helping you so much! Now if you can just get at what is making you so toxic.

Sherry

Thanks Sherry

Sorry about your challenging day yesterday, hope today is much better.

I have to agree with Andrea, sounds like your appt was very thorough yesterday, and so many things you had been questioning and struggling with were addressed

Look forward to updates.

  miamia said:

julie what brand do you use

Miamia, I've been using KAL.

How are you doing??

  CarlaB said:

Later, my daughter was looking in my purse and my keys were there! There was a little pocket that was so hidden that I didn't even find it or feel the keys when I had emptied my purse!

  aprilh said:

Everyone,

I called that LED referral and the lady that does it is no longer there!!!! Darn! Thought I found someone. I left my name and asked if they knew of anyone who does it to call me.

Darn is right! Keep looking, something will come up i just know it.

  aprilh said:

I have to admit, I have trouble following the jumbled up paragraph.

I do too, I didn't say anything because I didn't know if that would be rude

rpm, just break up the sentences a little for those of us with brain issues.

[mftnchn]

Carla,

Were you on three months of levaquin without a break? My doc isn't so familiar with it for lyme, and he looked it up and said he could write the prescription for 28 days. I found a little info from Dr. B about it, which said at least a month and three months for really sick patients.

Sherry

[CarlaB]

Sherry, the prescription was able to be renewed for five months! My LLMD kept me on it until my symptoms resolved, then he switched me to Rifampin for another six weeks just to be sure. When I had no reaction at all to the Rifampin, he took me off it, too.

I felt bad every day the first six weeks on it, then saw improvement. If you are like me, 28 days will hardly give you an idea of how you will react to it. My LLMD says it takes 30 days just to see how you will react (for any drug).

[aprilh]

Sherry,

Why does that doc think you are definate celiac?

April

[mftnchn]

  CarlaB said:

Sherry, the prescription was able to be renewed for five months! My LLMD kept me on it until my symptoms resolved, then he switched me to Rifampin for another six weeks just to be sure. When I had no reaction at all to the Rifampin, he took me off it, too.

I felt bad every day the first six weeks on it, then saw improvement. If you are like me, 28 days will hardly give you an idea of how you will react to it. My LLMD says it takes 30 days just to see how you will react (for any drug).

Hmm. So you herxed for 6 weeks? Well, I think he'll renew if he thinks it will/is working.

I'm not anxious to herxing the whole time I am in the USA!

[mftnchn]

April, I asked him about it because I said I was wishing I had a more firm diagnosis. He said it was firm enough. He went on to say that he has had people (lots of kids) that have had biopsies that he suspects as celiac, and he said he has not had even 1 come back with a positive biopsy!! But Enterolab has picked up a lot of them that clinically have then been helped so much with the gluten-free diet. He agrees with Dr. Fine that there has to be a lot of damage for the ttg?? to leak out into the bloodstream and be picked up by tests.

He also said that personally he has been gluten-free for 12 years. Maybe once a year at a special occasion he will get a little gluten, and he doesn't react. But he said he is so convinced that it is an issue he doesn't go back to eating gluten. His mother died from a type of cancer that only celiacs get.

He said that positive Enterolab, symptoms, changes on the diet, and my gene type is evidence enough that I should never eat gluten.

[mftnchn]

Carla, I just looked again at the prescription he wrote, and it is written for 28 days, but refill is "prn" or as needed. So it looks like I can stay on it for awhile. I see him the first part of March but will be in regularly for IV's meantime. My LLMD is only 5 minutes away from where I am living this time!!

[CarlaB]

Sherry, as you know, everyone is different. i wasn't as bad as I was in the beginning, I was still somewhat functional, but needed a lot of rest/sleep (both). I could still make it to the grocery and cook dinner, except for during my monthly flares ... I was already in this bad of shape when I started it ... it was just a slight worsening of symptoms before I saw improvement.

My main point was, stay on it if it's doing something. Bart can be an easy coinfection if you treat it long enough and hard enough the first time. Better to stay on a strong drug like Levaquin a little longer then you're comfortable with than to get on it, get off it too early, and start over.

[mftnchn]

Yes that makes absolute sense. It's good to know that you were just a bit worse, that I can handle--I am dealing with that anyway off and on, and already am dealing with it on the new drops. I'm quite foggy this morning.

[aprilh]

Does anyone else feel this way? I am 34 years young but I feel and look like I am much much older! I wake up with my eyes all red and puffy. My skin is looking more wrinkly in my face. I have a few grey hairs that I need to cover up but don't know how.

I know this is a symptom of what's going on inside. I don't want to look this way!!!

[Rpm999]

haha i'm only 17 but look terrible myself, my skin looks off color and sickly, eyes always puffy....obviously never had grey hair, but my hair got very thin and dull looking

oh and sorry about the paragraphs, i know exactly what you mean, i struggle to read things like that but wasn't even realizing i was doing it

[CarlaB]

  aprilh said:

Does anyone else feel this way? I am 34 years young but I feel and look like I am much much older! I wake up with my eyes all red and puffy. My skin is looking more wrinkly in my face. I have a few grey hairs that I need to cover up but don't know how.

I know this is a symptom of what's going on inside. I don't want to look this way!!!

If it makes you feel any better, people are amazed at how I look now ... these are people who saw me when I was sick, but not so often that they don't notice the subtle changes.

When you get healthier, you will look healthier.

No one ever thought I looked "sick", but now they certainly notice I look better .... even my hair is different (texture, thick again). I'm 44, btw.

[confusedks]

Sherry,

I'm sorry you had a rough day, but it does sound like you had a great appt. It's interesting about the Celiac thing. My LLMD agrees with me about NOT going on a gluten challenge. Also, it will be an interesting conversation when we talk about the results that I had about me still getting gluten. It was off the charts high, like as high as someone who reacts to gluten, but hasn't taken it out of their diet yet!

And, my grandma has it, but doesn't follow a gluten-free diet (LONG story, lol). And I highly suspect my dad has it too, but won't get tested.

Also, I was going to say something about RPM's post too! LOL! I can't read people's posts on this board in other parts because they aren't paragraphed well a lot of times.

[mftnchn]

Thanks RPM that helps so much!

Yep, me too. I am hoping to look a little younger...but hey, what can you expect when you're in your 5th decade? LOL

Sherry

[CarlaB]

Umm, fifth decade? I'd rather say in my 40's! Yikes!

[tabasco32]

Hi everyone,

Yeah sometimes I look sickly and sometimes I don't. Especially when I can't wear makeup. Does anyone know of a good non toxic makeup to wear that doesn't irritate the eyes.

Hey Rachel I hear you wear makeup now. Is it good to wear?

Today I feel blah. Ryan, my mom's husband is smoking pot again in the house. I mean he smokes it in my moms bathroom with the door shut the window opened and the fan on, but STILL, come on now, I can still smell it, even taste it, GROSS.

Will I ever get better with that nasty smell. So I decided to get up and come to the library and see what is going on here.

I need to move out.

lisa

[Green12]

  aprilh said:

Does anyone else feel this way?

Yes, very much so April.

More so in the last 5-7 years from me, when my health has really declined rapidly.

I have often thought if I feel like this in my younger years, what is it going to be like when the natural aging processes really kick in in the 50s, 60s, and 70s?!?!

[Green12]

  tabasco32 said:

Today I feel blah. Ryan, my mom's husband is smoking pot again in the house.

Can you tell him not to smoke it in the house or around you, that it isn't good for you when you are trying to heal??

Some of us on the forum have had really good luck with Everyday Minerals, I don't react to it like I did Bare Minerals.

[Green12]

  Rpm999 said:

oh and sorry about the paragraphs, i know exactly what you mean, i struggle to read things like that but wasn't even realizing i was doing it

Thanks Rpm, this is so much better and very helpful

[tabasco32]

  Rachel--24 said:

Sheeesh Donna....what were you thinking??

Luckily I got self restraint and would NEVER think of doing such a thing!

ditto.

[AndreaB]

Ugh, wasn't getting email notifications again.

I caught up though.

April,

Hope you are able to be referred to someone else.

[confusedks]

  tabasco32 said:

Hi everyone,

Yeah sometimes I look sickly and sometimes I don't. Especially when I can't wear makeup. Does anyone know of a good non toxic makeup to wear that doesn't irritate the eyes.

Today I feel blah. Ryan, my mom's husband is smoking pot again in the house. I mean he smokes it in my moms bathroom with the door shut the window opened and the fan on, but STILL, come on now, I can still smell it, even taste it, GROSS.

About the make-up, I agree with the Everyday Minerals. It's GREAT stuff! It's really funny because my stempmom works for Loreal Paris, she runs the whole salon division in New Zealand and I told her that I like mineral make-up and she was really offended! LOL! It was very funny!!!

About the pot thing, I TOTALLY GET IT! My brother is now in rehab because it was such a problem for him, BUT the smell is just awful! I would suggest talking to him or your mom about it and see what they say.