Omg...i Might Be On To Something

[CarlaB]

Carla...no...I cant tolerate most processed foods....organic or not. I most likely wouldnt do well with Starbucks or anything like that. I dont know why I can have this ice cream (and sooo much of it)....but its only this one brand that I can tolerate...and only 2 flavors.

I LOVE starbucks though. When I start tolerating more things....Starbucks is one of the first things on my list! There is one right next door to BioSET and I am *always* tempted to go in...it smells soooo good when I walk by.

Me too Carla....thats a very cute pic of you and hubby.

When you said coffee ice cream, it seemed that it may work, but I forgot it was only one kind of ice cream. If I were you, I'd get a latte from Whole Foods first, not Starbucks ... I'm sure WF would use organic espresso, and I'm sure you would need that, too. Starbucks does have organic milk and organic soy.

Thanks

Rinne, I think Rachel has a good idea about making an appt. for down the line. I'm very against antibiotics, but I think most of that opinion has been formed by how badly my body handles them ... if it's Lyme, that would be the reason I handle them so badly, so if I can get rid of it with them, I'm all for it! Keeping in mind that I need to be rebuilding my immune system as the same time so that it can take over once I'm off them.

[CarlaB]

Nothing in the mail today ...

[AndreaB]

Carla,

This week is getting really long.

Rachel,

Can't wait to see what bioset #1 says/does today.

Thanks for trusting me with your picture.

[miamia]

So one of the most important things I learned today is that a higher body temp. means that everything in the body is working BETTER. This is my goal for the month....to see if I can really raise my temp. and reduce sensitivities and FEEL BETTER!

Rachel-

wow thats alot if info thank you so much for posting all of it!! The body temp thing for me is really previlant - the cold makes my symptoms so much worse!! The problem is being indoors all day makes me feel sick too- kind of a no win situation- just short walks and lots of baths.

i hate the way i look lately...so thats why i took mine down. my face is so gaunt...i just don't look like "me"....some of the wedding pictures (from the wedding i was in a few weeks ago)...where they are "full body shots"...i look borderline disgusting (and no, i'm seriously not being dramatic....my body is just not built to be 96 lbs)

Laura-

I completly realte to this that is why I never change my photo becasue I don't allow anyone to take pictures of me anymore. The last few times someone did I cried looking at them- it is scary to see how thin I ahve become and for some reason it really shows in phottos - I think I walk around with a false image of how I really look and I am happier that way

[Green12]

Hi all!

Rinne, I am so sorry you are not feeling well from the herxing. Please hang in there with all of that.

Laura, I haven't experienced the wasting weight loss like you have, and most of the others. When I am at my sickest I am massively swollen and it looks like I have gained enormous amounts of weight in a short time period, so maybe it is different circumstances, but I can wholeheartedly relate to the not recognizing myself in the mirror and looking at pictures that feature me in that way and I am disgusted, and I grieve. I grieve because I know that I am sick in those pictures and am reminded how much my body doesn't work. But I try to think about the fact that it is just my body, and it isn't "me", I am still "me" no matter what is on the outside. And we love you for "you" . Feel better

Rachel, I have a thought. I have a stainless steel tea kettle that I warm up my filtered drinking water on the stove burner, and I drink warm water throughout the day (I can't stand drinking cold water, I have a huge aversion to it) Maybe this would be good for you to, to drink warm liquids, especially water? When you are at work I am wondering if you could use an insulated thermous to keep it warm (of course some of those thermouses make me sick, the plastic they are made of), not sure on your drinking habits/preferences ....just an idea I got.

Andrea, how is your head feeling today? I hope better.

Susie, whew! I am glad that coffee mate states that it is gluten-free. Hope you had a great day at work

Hugs and love to everyone

[Rachel--24]

Rachel, I have a thought. I have a stainless steel tea kettle that I warm up my filtered drinking water on the stove burner, and I drink warm water throughout the day (I can't stand drinking cold water, I have a huge aversion to it) Maybe this would be good for you to, to drink warm liquids, especially water?

Yeah...I'm drinking hot water. I just microwave my regular bottled water and drink it hot.

The Dr. wants me to drink my water this way too. I NEVER drink refridgerated water anymore....not since I got sick. I have a major aversion to it too....my water is always room temp.

Prior to getting sick I drank everything COLD....I used to use those cups that you keep in the freezer to chill your drinks. I would have never even considered drinking something that was room temp.

The temp. thing is a big part of my problem. When I first started getting sick I was "abnormally" cold...at that time I had an overactive thyroid....which would noramlly raise my body temp. I guess the mercury and Lyme were "overriding" the hyperthyroid symptoms and making me cold.

I dont really drink anything when I'm at work. I used to drink soda all day but now I just dont drink anything. I could always bring a mug to work and microwave my water there...it would be helpful when I'm feeling REALLY cold. Otherwise I dont really see myself taking the time to go and heat up some water.

[linds]

ugh i hate waiting! Because i live in a small town they have to send all of my blood samples out of town to be tested. they said it would be at least a week and a half before they knew anything which is driving me nuts and it hasn't even been a week!!!!

[Rachel--24]

WOOHOO!!

You guys wont believe this but OMG...melted HOT ice cream is soooooo good!

I had some on my lunch and I think it was the BEST hot chocolate I've ever had.

The other day I found some organic egg nog at WF that so far I've actually been ok with. I only drink a small glass at a time but its great that I can have some....I totally love egg nog.

So right now I mixed my ice cream and the egg nog together in a big mug.....all I can say is....OMG....I am so glad I decided to drink my ice cream!

Yup Mango...you said it...I've got some serious ice cream determination.

[jerseyangel]

You know what they say Rachel--"Where there's a will, there's a way" You were eating that ice cream, no matter what.

[AndreaB]

Linds,

We'll be bitting our fingernails along with you.

Rachel,

What are we going to do with you?

[rinne]

Thank you all for your support.

A friend I was talking to yesterday mentioned a LLMD in Sante Fe that does alternative treatments so that may be a possiblity at some point but for the time being I am going to study this and see if I can continue to make improvements on my own.

Rachel, I am glad the hot ice cream is good, it sounds a little like drinking warm creme anglaise, I've done that and it is so good.

[Rachel--24]

Rachel, I am glad the hot ice cream is good, it sounds a little like drinking warm creme anglaise,

Creme anglaise??

It sounds fancy and sophisticated.

I'm not sure what that is but the hot ice cream wasn't anything like the hot chocolate that you make with chocolate powder in a packet and some water (with some tiny marshmallows as a bonus) .

Nope...THIS hot cocoa was thicker and creamier and DELICIOUS! It didnt even need marshmallows for flavor.

[AndreaB]

Nope...THIS hot cocoa was thicker and creamier and DELICIOUS! It didnt even need marshmallows for flavor.

That sounds really good Rachel.

Have you had your appointment yet?

[rinne]

Creme anglaise??

It sounds fancy and sophisticated.

In my secret life I am fabulously fancy and sophisticated.

It is a custard made with light cream, egg yolks, sugar and vanilla that is cooked on a stovetop until it thickens. One recipe I have for cinnamon creme anglaise says chill and add heavy cream to turn it into ice cream, so it seems it is ice cream before the ice part.

[diamondheart]

Quick drive by for me as well. My Chinese medicine doctor has told me not to eat anything cold, but my body temps are ok. My other acupuncturist just wanted to know if I go below 97 degrees, but I don't.

Carla, I use a digital basal body temperature thermometer so I don't have to worry about mercury. They probably aren't as acurrate, but a lot faster in taking your temperature.

I have started the BioSet treatment to try to clear my food allergies, at least most of them. My acupuncturist explained to me that it's about 60% effective but that I would be a good candidate as my digestive enzymes are good and I don't have that much intestinal inflammation. Also, he tells me that sometimes, one food allergy is causing the others, so there might be one core food allergy that he won't be able to clear. I'd be so happy if I "just" had to cut out gluten!! So far, I've just gotten treatment for clearing phenols, which I guess are really hard to avoid in foods and are in everything. My acu doesn't really attempt to explain everything to me. I ask him what are in the little vials he is testing, and when it's too complicated to explain, he just says "stuff". I want to speed up this process though and start going twice a week instead of once a week.

I'm getting a little worried though as some of the same feelings of cramping and nausea are coming back after going the bathroom. I am eating out a little more than usual since my hubby is travelling, so god knows what I'm really eating, even though I'm avoiding all the foods I can't have. Can't wait till he gets back home!

When I know more about how the Bioset treatment goes, I'll report back.

Claire

[AndreaB]

Thanks for the update Claire. We'll be looking for more in the near future.

Rinne,

That creme anglais sounds really good too.

[Rachel--24]

Andrea...I FORGOT to mention that my BioSET was canceled for tonight!

They called me today.....told me she had some kind of dental emergency....so no treatment today.

I was suppossed to get the Samento from her.

When I know more about how the Bioset treatment goes, I'll report back.

Claire

Claire....good luck with your BioSET treatments!

Yes....we would love to hear how things are going.....looking forward to hearing more.

It is a custard made with light cream, egg yolks, sugar and vanilla that is cooked on a stovetop until it thickens. One recipe I have for cinnamon creme anglaise says chill and add heavy cream to turn it into ice cream, so it seems it is ice cream before the ice part.

Rinne....yeah it sounds yummy!

It sounds alot like my unsophisticated HOT ice cream...

I posted these on another thread but thought I'd put them here too since we've been talking about the body temp. thing.

Lyme disease can lower body temperature and create poor blood circulation. A person is also likely to feel cysts, lumps, and swellings in different areas of their body that often change and move. The bacteria walls itself off, and creates an environment in which it can grow and thrive and the person with the disease ends up in severe pain, with horribly low energy, and neurological problems. The disease thrives in a low temperature, low oxygen environment, and that is the environment it creates within the body.

Heat can be helpful for treating Lyme Disease because the bacteria appears to prefer a low body temperature and is vulnerable to high heat. There are many different sources of heat that can be used to treat this condition. Heat can also be helpful for people with fibromyalgia and CFS who may actually have undiagnosed cases of Lyme Disease.

YUP.....my DR. is right. I NEED heat.

I need another heatwave like what we had over the summer.....that was GREAT.

[AndreaB]

That's a bummer about your appointment Rachel.

I look forward to hearing about everyone's baby steps to better health.

I'm going to have to steal myself to not go out and get some ice cream. Avoiding dairy and chocolate. Seems I'm the only one who can tolerate it......so out it goes.

[CarlaB]

Claire, I tried using a digital thermometer, but as you said it wasn't as accurate. I need to detect the four tenths of a degree change in temp., and I couldn't do it with a basal since my temps were so irregular. In the people I taught NFP to there wasn't this problem, but for my own crazy temps, I needed the more accurate thermometer.

Rachel, glad you liked your "hot cream"!!

As far as water goes, I've always drank mine room temperature. It's just too cold with ice!! I like ice in ice tea, but I seldom drink it and it has to be really hot out for me to. I even prefer room temperature red wine to cold white wine ... not that I drink much of either anymore.

[georgie]

Hypothyroid can make you have low temps. You had your Thyroid nuked and then have replaced it with 1/3 of what a healthy thyroid produces. That won't be helping you get well. You need a healthy thyroid to fight infections.

[Rachel--24]

Hypothyroid can make you have low temps. You had your Thyroid nuked and then have replaced it with 1/3 of what a healthy thyroid produces. That won't be helping you get well. You need a healthy thyroid to fight infections.

Georgie....I know I've told you this several times already but I had HYPERTHYROID. Hyperthyroid is an overactive thyroid.....in this case a person gets OVERHEATED. I was always warm and I'm sure this was due to my overactive thyroid gland.

All of a sudden....even though I had HYPERTHYROID...I was FREEZING....I had CHILLS. I was NOT able to get warm and I was SICK. How many people do you know with HYPERTHYROID walk around with chills and are freezing??

The point I'm trying to make....once again...is that I was sick BEFORE I nuked my thyroid and became HYPO. I was cold BEFORE I became Hypo. I nuked my thyroid out of desperation because I was ALREADY sick and I thought it *might* make me better. My thyroid was NOT the reason I was sick though...so the RAI did nothing to improve my symptoms. There was NO change. My thyroid was NOT the cause of my illness....period.

I think I know what my CORRECT dose of medication is.....especially after 2 years of experimentation and having labs done every 4 weeks.

Once again I will tell you that I'm not gonna ignore my body, my labs and my experience with med adjustments because you *think* I should be on a higher dose. I KNOW how much thyroid replacement I need to be on....I told you I've went HYPER on meds more than once....the labs PROVED it.

The advice you give is dangerous....you cant possibly know what dose is correct for anyone but yourself.

Also....did it ever occur to you that some of my thyroid may have survived RAI treatment??? This is not uncommon and part of my thyroid could still be producing hormones....which *may* be why I dont need to take the HUGE amounts of Armour that you *think* I should be taking.

I think you should familiarize yourself with Graves Disease and RAI before you start *telling* people how much meds they should be on...or advising people to take 3 or 4 times the amount of meds they are currently on...especially when they have NORMAL labs.

I'm telling you....if I took those doses....I would be VERY hyper....which would NOT be good for my heart. You dont know my body and you dont know what dose of thyroid is correct for me.

Please stop handing out potentially harmful advice.

[Fiddle-Faddle]

Yeah...I'm drinking hot water. I just microwave my regular bottled water and drink it hot.

Hi, Rachel, quick drive-by!! Just wanted to make sure you are not popping the plastic bottle in the microwave--you're not, are you? Plastic IS supposed to be "microwav-safe," but that just means you won't destroy the bottle or the microwave. The plastic decomposes slightly, and chemicals leach into your food or liquid, so ALWAYS use china!

Georgie, nice to see you! You are fairly recent here, so you may have missed that Rachel has been doing very thorough research on her condition(s) for years now, and knows more about celiac, Lyme, mercury, and thyroid than any person I know! I know you want to get the word about about hypothyroidism, but on this thread, you're preaching to the choir!

some of my thyroid may have survived RAI treatment??? This is not uncommon and part of my thyroid could still be producing

My mother had a thyroidectomy 40 years ago. They were supposed to take out the whole thing, but apparently, they left a tiny corner. At least, that's what they assumed, because her TSH and T4 were NORMAL for the next 35 years.

[miamia]

Rachel-

Ok yesturday I was out of it but I wanted to say It sounds to me like your appt. went really well. I know this is not your faviorite doctor but I really liked how he didn;t dismiss lyme or coinfections and seems to be treating you as you and not just a patient- and working with your sensitivities. I think its good your mom went with you - it seems like sometimes no matter how much you explain to someone that certain things are because of the illness and not becuase of you they don't get it until a doc says it. (Idon't know if this is the case with your mom) I know my mom gets it and that helps me alot but the other day I was with my sister and she didn';t know how to react to me - I was having a weird mood fluctuation she first just kind of ignored me - which I know was just her trying to give me space but when I told her to stop it was upsetting me she started laughing and it hurt me really bad - she laughed at me like I was crazy- I know she didn't mean to make me feeel bad I am just so super sensitive right now. I already feel crazy I don't need anyone confirming it.

Julie-

I am glad you have been posting more- I missed you. I hope you are feeling alright- how are you feeling? What is the status of your testing?

Andrea-

no dairy for me either- so No "Hot" or "ice" cream. I have soy allergies but not nearly as bad as dairy and everyonce in a while I cheat with this soy ice cream. Its weird I have tried all of them and finally found one that does not seem to cause a reaction. I think becasue most of them have xanthium gum and all this other cr*p and it dosen't have any of that.

Carla-

you are patient my dear- I would be ripping my hair out if I didn't have my results back yet. I am ripping my hair out actually waiting for my results and I had my testing done after you. If you have acsess to a fax machine sometimes they will fax you the results and this saves a few days. (I know I'm crazy)

Susan-

It has been quieter on the site I think becasue we are all waiting for results or something maybe the holidays will bring lots of crazy posts and weird stories.

Laura-

By the way I posted yesturday about how I understand your feeling about the posting our pictures but I forgot to say that you look beautiful in all your pictures and I know I don't know what you looked like before and that is more of the issue than anything else- not looking like your self but you do look beautiful.

Miamia

[AndreaB]

Morning all!

Miamia,

Glad you are feeling better today. Sorry yesterday wasn't good for you. I must say, I don't know how my mom would be if I were really ill. If she understood everything she'd more than likely be fine, otherwise she'd be more like Rachel's mom.

We are waiting for your results as well....

[Rachel--24]

My mother had a thyroidectomy 40 years ago. They were supposed to take out the whole thing, but apparently, they left a tiny corner. At least, that's what they assumed, because her TSH and T4 were NORMAL for the next 35 years.

Alison...it sounds strange but it actually happens.

I guess your mom's thyroid just said "You arent taking ME down!"

Whatever was left of it must have just kept pumping out the hormones.

Lots of people with Graves have had to actually repeat the RAI 2 or 3 times because it didnt get the job done and they were still hyper. They gave me a big dose the first time and it worked....I went Hypo about a month later.

I've often thought that my thyroid may still be functioning but not enough to keep me at normal levels on its own.

I had asked my Endocrinologist about this a long time ago. He said it didnt matter if part of my thyroid was still functioning. The important thing was that it wasnt making me hyper anymore and that my levels were normal.

I was VERY upset after going through all of this and having no improvement in my health or my symptoms.

At that time my Endo. swore to me that my problem was not my thyroid. He said after 30 years of treating people with thyroid disease he was certain my symptoms were caused by something else. He said "Whatever it is.....none of your Dr.'s have been smart enough to figure it out yet."

I didnt want to believe him at the time and I drove him crazy for 2 years. He let me play with my meds and my doses because I just wouldnt give up...kept badgering him...thinking that if I found the *perfect* dose I'd get better. In the end he was right....and I was wrong.

About the bottled water. I pour it into a mug and microwave it in the mug. I think if I microwaved the water while it was still in the plastic bottle the chemicals in the plastic would leach out and the water would make me sick. It happens when I leave bottled water in my car and it gets hot from the sun....the chemicals get into the water and I'll get a reaction.

I always thought that the plastic bottle would melt if it went into the microwave?? Wouldnt it??

My mom would KILL me if I got melted plastic all over her microwave.