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Rachel--24

Omg...i Might Be On To Something

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Everyone,

Thank you for the suggestions. I think I may call the PT office I used to go to (after my hospitalization in June for my back) and see if they can help me. I am worried about chiropractors because I went to one for about 6 months for my back (before we knew about the spinal curve, etc.) and he just wanted to keep adjusting my instead of taking x-rays to see if my spine was all right. Then my MD told me a horror story about a patient dying after seeing a chiropractor. :(:o

Sherry,

Thank you for the idea!! I will try that! My mom is going to put a letter together today actually telling the doctor some basic info about ferritin and iron deficiency and how it affects a patient's well-being (or lack thereof in my case). Then she will say that we are unwilling to wait a week in between the IV's and the abx. Also, that the hematologist only released me into her care because he thought she was going to be taking blood every week...and she has "forgotten" to do that.

I hope a letter helps her move her butt.

It's great to hear you are doing so much better....there is hope! One day I will look back at all of this and just laugh because of their stupidity. <_<

Carla,

I know...it is funny (kind of) just because their lack of promptness. The GI seems just so unconcerned. She is literally the best IBD Dr. in all of Southern CA and she doesn't know what ferritin does. I wonder how many possibly malabsorbing patients she sends away because their hemoglobin is fine? UGH!

I am jealous of your lattes! ;)

Jin,

I'm kinda of the mindset that the less allergenic foods I have in my diet...the better off my immune system is. For me, I am dairy, gluten and soy free and still am not better. So you may find some relief with a completely dairy free and/or soy free diet. Also, people who have intolerances to dairy tend to have problems with soy...my "regualr" western Allergist told me that...that's when I decided to go soy free. And, honestly it's not that big of a deal. Just say good bye to convenience. Lol!

As far as chocolate...most dark chocolate (organic..not Hershey's, etc.) is dairy free. It may be harder to find ones that are free of soy lecithin...not everybody reacts. I can have a piece of gum like once a month and be fine, but anymore than that...I can't do. You can experiment with that one though. Trader Joe's and Whole Foods brand dark chocolate are both dairy free and soy free. That's only the dark though, I don't know about milk, etc.

Signing out of school was really hard...especially when the teachers were like "are you doing better?" I was like NO!! Why would I leave school if I was better? UGH! Oh well. And, I was the "perfect" student, so I have to let go of that...the entire 11th grade teaching team knew me...and loved me. sigh

I hope any appt's you have go well.

April,

I would love to try a sauna, but I don't know where I would do that. I no longer have a gym membership...hmm. We were going to try to sign up again...but it's expensive. Stuid LA gyms...overpriced.

Kassandra

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Kassandra,

I don't know if this would apply to you but YMCA has a special membership option for people who can't afford the "regular" dues. Due to illness or whatever the case may be. This is what i did. I applied and got approved for a familly discounted rate.

You fill out some paperwork and you would probably need to list some of your health issues and all the money that goes into that and they will let you know what your rate will be.

When I was a teenager I paid like $18 per month! I was sorry that I let that membership expire!

Now I pay $55.00 when the regular rate is $84.

Just a thought!

But if not, anyway you can get some sweat going is helpful. Its just harder to do in the bath.

MY ND did tell me about another way though. You get in a hot bath and soak for as long as you can. Get nice and toasty. Then when you get out, wrap up in a sheet, put socks on, and hop in the bed and cover up real good. Make sure you are staying toasty. Go to sleep and when you wake in the morning you might see some some dark colors on the sheet. She recommends this for detoxing from cigarettes. She says you can see the nicotine stains on the sheets that came through the pores of the skin. Even if you didn't smoke, I am sure it has the same affect with toxins.

I used to smoke so I am sure I am filled up with "junk"!

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April,

The problem with the local YMCA's is that they're pretty gross. Also, my mom makes good money, but with all the medical bills...her money goes too all the doctors...lol. ;) So, the bracket we fall into is not "needy" but they don't realize the cost of living. It may work though...if you tell them how much money goes to medical...ALL OF IT! LOL!

We do have a great gym about 2 major blocks away, but I guess I just need to sign up for it again. I used to go, but we let the membership go because I was too sick to ever go. Not that I feel any better, but everyone with Lyme seems to emphasize the importance of weight lifting.

I will also try the sheet thing and see if that helps. Thanks for the ideas. :)

Kassandra

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She says you can see the nicotine stains on the sheets that came through the pores of the skin. Even if you didn't smoke, I am sure it has the same affect with toxins.

I used to smoke so I am sure I am filled up with "junk"!

April,

totally wierd that you mention this because yesterday morning I woke up and I could *swear* I smelled like cigarettes. :huh:

I sometimes sweat at night but I had lots of layers on...plus the heater....so probably was more toasty then normal. Anyways I smelled it!! I smelled it on my hands and all around me...but I havent had a cigarette in like 2 years. :unsure:

I'm not sure if I detoxed some...or if I was just hallucinating the smell of cigarettes. :unsure:

Anyway...it was totally grossing me out. YUCKY cigarettes!!

I smoked around a pack a day for about 14 years. :ph34r:

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I have to go in tomorrow for a D&C. What they did yesterday didn't work. I really, really wanted to avoid this. I did everything to avoid it, but looks like it's necessary. I'm a little scared. I hope they don't do any damage. There's always that possibility. I'm trying to be as positive as I can. I'm still amazed that this is all happening.

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Not that I feel any better, but everyone with Lyme seems to emphasize the importance of weight lifting.

Or some kind of strength training .... you could even get a Yoga DVD .... I did that for a while .... I learned about some simple stretching moves that I still do. There is a lot of strength in Yoga and it's not as tiring, rather it's relaxing.

I still prefer weights though. ;) Dr. B says strength training in his guidelines, I believe .... but that can go beyond weights and the gym if it needs to.

Does anyone have a good lotion that they use that isn't too strong scent wise? Also, gluten free? My hands and legs have been realllllly dry lately.

Thanks! Kassandra

Can you use coconut oil?

I use Burt's Beeswax lotion when I'm really dry.

I have to go in tomorrow for a D&C. What they did yesterday didn't work. I really, really wanted to avoid this. I did everything to avoid it, but looks like it's necessary. I'm a little scared. I hope they don't do any damage. There's always that possibility. I'm trying to be as positive as I can. I'm still amazed that this is all happening.

I'm sorry .... this is a tough time for you.

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Ami, you've been through so much, you are in my thoughts and I hope tomorrow goes well. My mom had a D&C years ago, she came through it fine. I think they used to do these more in the past then they do now, but I'm not sure? Take some deep breaths, keep focusing on those positive thoughts and it will be over soon.

Carla, I do lots of yoga. Not only is it great exercise, but it works all the muscles, increases oxygen flow throughout the body, improves flexibility, AND releases TOXINS!! You can't lose with yoga :D If I didn't have all this edema and inflammation I would be all toned muscle, sigh....

Kass, I have the urge to call you little Kass :ph34r: (me and my nicknames :lol: ) I use Alba Botanica Very Emolient Body Lotion. I get it at the health food store in a HUGE bottle. It goes on sale frequently too so I try to stock up when it does. They have different formulas, unscented, extra moisturizing, etc.

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Julie,

Hehe. That's cute...I don't usually go by nick names, but I don't mind. I think I will try that lotion, I have their facial moisturizer...it's amazing!

Everyone,

I have some good news to report. I'm going to start the iron IV's on Monday. Well, it's not for sure, but we are waiting to hear back from the case worker to see if the insurance will for sure cover the PICC line (my mom doesn't think they'll cover it, so she wants to make sure). If they do, hopefully I will get it in on Friday, and then start IV's on Monday.

Once we find out if we can do the IV's (as far as getting appts with the Hematologists' office), we will make the appt. with the LLMD. PRAY ALL GOES THE WAY WE WANT!!! My mom is so close to calling the LLMD's office, if one thing goes wrong, I'm worried she won't call!!!

The GI Dr. wouldn't even talk to my mom, the nurse called and literally said "just have her have the IV's." LOL! I think they are fed up! LOL! My mom is pissed, I don't care at all!!!!

The abx aren't helping at all...still bloating, D, nausea....

Kassandra

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Hello!

I need help from anyone who might have had experience with this.

My daughter seems to be going through "precocious puberty" or early puberty. She is only 7 and I have discovered some hair growing "down below". She has also had some smelly underarms. I am now putting 2 and 2 together and discovering she must have some kind of hormonal imbalance.

This is really freaking me out! I think its just too early. I am looking into taking her to a pediatric endocrinologist to have some testing done.

Does anyone have any experience with this?

Thanks!

April

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Carla,

Thanks for the reminder about patience. A strong point of mine it is... not! :rolleyes::)

Kassandra,

That is simply beyond ridiculous what your doctors are doing. :angry: Don't they see that a seriously ill patient of there is suffering because of their pettiness! Good for you and your Mom for writing to them!

My Mom got a book out of the library today about making your own scented soaps, bath salts, and bath oils! As a person whose never been able to tolerate many chemicals I got so excited! Guess what people are getting for Christmas from me? :P I'll post the name of the book when I hunt it up again.

Praying for you for your appointment!

Jin,

Sparkling pink e-coffee! :lol: :lol: :lol: That poem's so funny! :D

Ami,

:wub: I'm so sorry. I was born after my mother had three miscarriages, and needed a D&C after the third one. You should come out find from it.

Andrea,

Thanks for the info! I'm not sure how much the LLMD uses alternative medicines, but the nurse there did BioSet for years, so I'm pretty sure she knows a fair bit about herbal things.

Julie,

Thanks for posting that info on the lotion. My skin hates winter, and it's difficult finding something with coconut oil, which my skin hates even more!

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Ami you are very much in my thoughts.

April, that is awful. There was some posting on this forum and maybe this thread about hormones in milk and meats being a big cause of this problem.

Here in China it is a problem too. Our landlord's twelve year old son just had to have surgery in the private area, and it was related to this same issue of additives in food. He is so angry about it, he says he can't wait until his son is old enough that he can send him out of China!!

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April,

I can ask my friend. She is now almost 18 and when she was really young (although I don't think she was quite that young) she starting to develop breasts, etc. and they sent her to a specialist to fix the problem. I will ask her more about it tomorrow because I don't remember exactly what she had done. I won't be able to talk to her until about 3.30 my time (I'm in CA). I will post what she tells me.

Sherry,

I know this is kinda off topic, but do you like living in China? I learned Mandarin for a while and I loved it!!!! :D I was going to go to China for 6 weeks over summer break to do a volunteer/study abroad thing with NYU, but my health won't allow.

Birdy,

I used to be really into making natural soaps. I actually was really good at them for a while. That's actually a good idea for the holidays. I don't know if I ever saw natural lotion "recipes" though. Let me know what you find out.

Kassandra

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Kassandra and Birdy,

There should be recipes out there, maybe on the net...

I have a body moisturizer that I love, that is homemade. I bought it at the local farmer's market from a woman who makes organic moisturizers, bath powders, and candles. It's wonderful!!! It has oil, sea salt, organic fragrance oils, and I don't remember what all. But it's the best thing I've ever used.

I don't remember what type of oil is in it, but I have her email address around here somewhere. I will dig it up tomorrow!

Edit-- Also, Susie/DingoGirl found a moisturizer that she LOVES from bodymoose.com They aren't scent-free, but some are gluten-free. And she said that the customer service is really above and beyond- so if you were interested in a product you could email or call and find out exactly what's in it. Some of it has oatmeal, but I don't think it all does???

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Rachel,

How did you quit smoking? Did you use any particular method? I've been a smoker for about 12 years, and I really want to quit come the new year. I've tried many times before- it's hard!!! The closest I came was during my pregnancies, when I was down to 1 or 2 cigarettes a day. But the past month or two, I've been having mild asthma attacks, which I haven't had since I was a kid... Having them almost every day now. :(

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I have to go in tomorrow for a D&C. What they did yesterday didn't work. I really, really wanted to avoid this. I did everything to avoid it, but looks like it's necessary. I'm a little scared. I hope they don't do any damage. There's always that possibility. I'm trying to be as positive as I can. I'm still amazed that this is all happening.

I'm sorry Ami. :( I'll be thinking of you. Everything will be fine.

I have some good news to report. I'm going to start the iron IV's on Monday. Well, it's not for sure, but we are waiting to hear back from the case worker to see if the insurance will for sure cover the PICC line (my mom doesn't think they'll cover it, so she wants to make sure). If they do, hopefully I will get it in on Friday, and then start IV's on Monday.

Once we find out if we can do the IV's (as far as getting appts with the Hematologists' office), we will make the appt. with the LLMD. PRAY ALL GOES THE WAY WE WANT!!! My mom is so close to calling the LLMD's office, if one thing goes wrong, I'm worried she won't call!!!

That is great news! Hope everything goes well and your mom doesn't change her mind.

My daughter seems to be going through "precocious puberty" or early puberty. She is only 7 and I have discovered some hair growing "down below". She has also had some smelly underarms. I am now putting 2 and 2 together and discovering she must have some kind of hormonal imbalance.

This is really freaking me out! I think its just too early. I am looking into taking her to a pediatric endocrinologist to have some testing done.

9 is about the normal age for girls to start through puberty now. :(

I believe African Americans start around 8.

Many things contribute to early puberty. I knew about hormones from meat/eggs and dairy, but have learned that soy and plastics can cause alot of problems too. I would be surprised if most children don't have some sort of problem with plastics.......it's everywhere! Two of my children already tested as having plastics that are causing problems (the ASYRA test). We had Laser Energetic Detox for my daughter before we ran out of money but I think it was too little too late. She was starting to have some breast tenderness but hasn't talked about it for the last couple weeks or so.

My Mom got a book out of the library today about making your own scented soaps, bath salts, and bath oils! As a person whose never been able to tolerate many chemicals I got so excited! Guess what people are getting for Christmas from me? :P I'll post the name of the book when I hunt it up again.

Sounds interesting.

Jin,

How'd the appointment go today? Wasn't that today?

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Well, I ended up taking a nap at about 8.00 and I do NOT recommend that to anyone...lol! I was so tired I couldn't walk upstairs, so I slept on the couch and now...ugh. I have read every thread on LN and I am still wide awake..lol.

Let's hope this seemingly new problem of insomnia will go away eventually. It's killing me. Oh, did I mention I took these stress things that always used to make me sleep for almost 16 hours, and I'm still wide awake. LOL!!!

Also, I don't know if I mentioned this, but we should get my Lyme tests back tomorrow. I am not too excited because they will probably be negative, but I hope they are positive!!!

Sarah,

Thanks for the link. I will look into that.

Ami,

I hope all goes well. I was going to have a D&C a year or two ago, and don't they put you asleep...so you wouldn't be in pain during the procedure. I will be thinking of you!

Kassandra

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Also, I don't know if I mentioned this, but we should get my Lyme tests back tomorrow. I am not too excited because they will probably be negative, but I hope they are positive!!!

No you didn't mention it.

I hope they are positive too, but I'm not holding my breath. Will you still do Igenex if it is negative?

Hope you are able to get some sleep. :(

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Well, I ended up taking a nap at about 8.00 and I do NOT recommend that to anyone...lol! I was so tired I couldn't walk upstairs, so I slept on the couch and now...ugh.

Kassandra

GAH! I did the same thing! It's in the wee hours of the morning here, I actually slept a full 8 hours on the couch! Now I'm doing laundry and making cupcakes at 3:30am. :lol:

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So I guess I'm not alone in staying up late tonight! I didnt take a nap...I'm just not sleepy yet. :huh:

Been sitting here reading and listening to Xmas songs. I think its the music getting me all happy and in the holiday spirit. :)

Now its almost 2 am...and I'm eating beef and peas. :rolleyes:

Sarah...I'd rather be eating cupcakes! :D

I finally got my phone today...I dont have to stare out the window waiting for the Fed Ex guy anymore. :lol:

So I've been busy texting...making up for 3 days without my phone. :P

Ami...I'm really sorry things have been so difficult for you. You've been in my thoughts today.

9 is about the normal age for girls to start through puberty now.

Andrea...I know we've had this discussion before...but I still cant believe it!! :(

April...I was really sad to read that. It doesnt seem right that kids are going through this so early...7 is very young!! I dont have any answers but hopefully the Dr. can help with this.

Kassandra, I'll keep my fingers crossed that you get positive results back tomorrow!

Julie,

My vacation has been relaxing...but very unproductive. I've been lazy. :P

I also kept telling myself that I couldnt do anything cuz I had to wait for my phone to arrive. :lol:

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Sherry,

I know this is kinda off topic, but do you like living in China? I learned Mandarin for a while and I loved it!!!! :D I was going to go to China for 6 weeks over summer break to do a volunteer/study abroad thing with NYU, but my health won't allow.

Kassandra

Yes, actually I do. I am fluent in Mandarin, spoken and written. I type Chinese, but because I don't practice everyday, I blank out when I go to write characters unless I look it up to remind me. Lyme brain doesn't help!

Hey all you insomniacs...too bad I had a full busy day or I could have chatted with you all!

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Ami, you've been through so much, you are in my thoughts and I hope tomorrow goes well. My mom had a D&C years ago, she came through it fine. I think they used to do these more in the past then they do now, but I'm not sure? Take some deep breaths, keep focusing on those positive thoughts and it will be over soon.

Carla, I do lots of yoga. Not only is it great exercise, but it works all the muscles, increases oxygen flow throughout the body, improves flexibility, AND releases TOXINS!! You can't lose with yoga :D If I didn't have all this edema and inflammation I would be all toned muscle, sigh....

Kass, I have the urge to call you little Kass :ph34r: (me and my nicknames :lol: ) I use Alba Botanica Very Emolient Body Lotion. I get it at the health food store in a HUGE bottle. It goes on sale frequently too so I try to stock up when it does. They have different formulas, unscented, extra moisturizing, etc.

Julie-

This is the lotion I use too!!!!!!!!!! I love it !!! I use the unscented one . I used to use their bubble bath too, also amazing but now i pretty much avoid anything with fragrance. Between this lotion and kiss my face olive oil soap (also really good) that is my beauty regimen.

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9 is about the normal age for girls to start through puberty now. :(

I believe African Americans start around 8.

Many things contribute to early puberty. I knew about hormones from meat/eggs and dairy, but have learned that soy and plastics can cause alot of problems too. I would be surprised if most children don't have some sort of problem with plastics.......it's everywhere! Two of my children already tested as having plastics that are causing problems (the ASYRA test). We had Laser Energetic Detox for my daughter before we ran out of money but I think it was too little too late. She was starting to have some breast tenderness but hasn't talked about it for the last couple weeks or so.

I knew about the plastics and beauty products and food being either laced with hormones or how they block hormone receptors. Also toilet paper containing dioxins

What is ASYRA testing? I have been searching and searching and can't find anyone who does LED treatments here in Charlotte, NC. How old is your daughter?

I am going to have some tests run. I just don't like this at all!!!!!

I also read that metals and environmentals can cause this and she has metals.

We started her on a gentle slow detox this summer, but have stopped for now. Won't start again until the summer.

This is so upsetting! She is too young!!!

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I don't think anyone else here has dupuytrens, I posted once on the board and only had a couple of responses about relatives or whatever.

But I found one site that said no free fats, all vegetarian, then this: soak hands in hot water for 20 min 4 times a day and then work on stretching them. Hmm. If I didn't do anything else maybe. But with my work schedule plus all the other health routines, this is not very practical. Even once a day would be a challenge.

Then keep a low blood sugar. A three to five day fast could help.

http://www.ucheepines.org/dupuytrens_contracture.htm

I think the sugar thing may be valid for me to some degree. But the rest, I just don't know. The no meat seems the opposite of what I need. And with no soy, protein would be a challenge with no meat.

At this point I am just hoping it will not get so bad I have to have surgery. Looks like I won't be able to wear my wedding ring now. This latest irritation marked the popping up of a new large lump at the lower joint of my ring finger, and my ring was too tight to be comfortable. I had a really hard time getting it off.

Also, Donna, your exclamations about the website having those yucky pictures made me curious. So I had to go take a look. I agree! It is hard to believe people's intestines would retain all that! Goodness, no wonder people have symptoms! I think about the long term constipation that I have dealt with, read on that website and really have to wonder.

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So I guess I'm not alone in staying up late tonight! I didnt take a nap...I'm just not sleepy yet. :huh:

Been sitting here reading and listening to Xmas songs. I think its the music getting me all happy and in the holiday spirit. :)

Now its almost 2 am...and I'm eating beef and peas. :rolleyes:

Sarah...I'd rather be eating cupcakes! :D

I finally got my phone today...I dont have to stare out the window waiting for the Fed Ex guy anymore. :lol:

So I've been busy texting...making up for 3 days without my phone. :P

Ami...I'm really sorry things have been so difficult for you. You've been in my thoughts today.

Andrea...I know we've had this discussion before...but I still cant believe it!! :(

April...I was really sad to read that. It doesnt seem right that kids are going through this so early...7 is very young!! I dont have any answers but hopefully the Dr. can help with this.

Kassandra, I'll keep my fingers crossed that you get positive results back tomorrow!

Julie,

My vacation has been relaxing...but very unproductive. I've been lazy. :P

I also kept telling myself that I couldnt do anything cuz I had to wait for my phone to arrive. :lol:

Rachel-

glad you got your phone back-

quick question - now that i have been getting chelation for a hwile i was thinking of getting retested for lyme adn see what happens. Any opininions?

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