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Rachel--24

Omg...i Might Be On To Something

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Yes, it is scary. I've been sick for a long time, too, and also have children.

I can tell you that this overall has had a good effect on my family. I would not have chosen it, but it has made my kids learn how to be independent because they have to be. They have to get themselves off to school because I can't get up in the morning. They have to keep track of their own schedules because my mind won't do it.

They also have learned how to clean the house together and do the laundry together.

But, these things are nothing compared to the compassion they have learned.

You know how when a family loses a parent to cancer after a long time of suffering how they seem to have a really strong bond because of what they have been through together? Well, my family has that .... and they didn't have to lose a parent for it.

Your kids will learn a lot from your tenacity. So far, you haven't sat back and let this disease take you over .... you will continue to fight and the kids will learn from it.

Maybe it's not the way you would have chosen, and yeah, you miss out on a lot, but there is good, too, if you look for it.

So, be brave, you have a fight ahead of you. We're here for support.

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Yes, it is scary. I've been sick for a long time, too, and also have children.

I can tell you that this overall has had a good effect on my family. I would not have chosen it, but it has made my kids learn how to be independent because they have to be. They have to get themselves off to school because I can't get up in the morning. They have to keep track of their own schedules because my mind won't do it.

They also have learned how to clean the house together and do the laundry together.

But, these things are nothing compared to the compassion they have learned.

You know how when a family loses a parent to cancer after a long time of suffering how they seem to have a really strong bond because of what they have been through together? Well, my family has that .... and they didn't have to lose a parent for it.

Your kids will learn a lot from your tenacity. So far, you haven't sat back and let this disease take you over .... you will continue to fight and the kids will learn from it.

Maybe it's not the way you would have chosen, and yeah, you miss out on a lot, but there is good, too, if you look for it.

So, be brave, you have a fight ahead of you. We're here for support.

Well said Carla and worth repeating. :)

And Truthsearcher I am glad you have found some answers. :)

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Ha, Rinne, Rachel has decided that there MAY be more to pink than meets the eye, lol. :lol:

......

Okay, wow, I had a TON of sensitivities there. It was interesting because what came up today really jives with what I think I have problems with. A lot of paint things came up...I afew years ago I used to oil paint, but had to stop because the chemicals were getting to me...no wonder, lol. Can't even use acylics though anymore.

The stupid chemicals are affecting EVERYTHING! Stupid chemicals. I can't remember all of them, but lots of common ingredients in cosmetics came up. :( I basically only wear makeup on Sundays or special ocassions now, but my eyes always burn when I do...also, some of this stuff is in the cleansers and lotions I use.

Stupid chemicals.

.....

Another mysterious reference to Rache and pink. :lol: So I am thinking that Rachel has learned that pink is a healing color, my question is how the pink is being delivered. :lol:

Chemicals are a problem for me too, can't stand the laundry aisle at the grocery store and I did do a fair bit of painting, house with latex mostly but I know some of it was toxic and I was never all that careful about not getting it on me.

I agree.

Stupid chemicals. :angry:

...

I used to get very faint after about 30 seconds in a store. I still avoid exposures where I can. A big one to avoid--cooking on a gas stove. Gas heat can be a problem, but the stove/oven is a major issue.

...

Good information, thanks, it also makes me feel better about my electric stove and as a cook I always liked cooking on gas. :(

I'm in the process as well, but am on HRT for now. Natural progesterone and estrogen patches, small doses. The doc put me on this due to bad insomnia. My gyn says she isn't too worried for this small dosage and once I am fully into menopause we'll back it off.

I am finding the hot flashes not too bad but recently am concerned that it might be babs instead of hormone related.

That's me except that I am waking up soaking wet. Actually hot flashes are occuring more and more throughout the day. Does anyone know what the nutracetical for babs is?

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Rinne, Artemisia works for babs.

Rachel could wear jeans to work if she wore a breast cancer shirt .... I think it lasted for a month. She felt her best during that month .... she also had many comments about what a hottie she is .... so she learned, pink is her friend. :)

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Beautifully said Carla. My kids are 4, 6 and 8 and I'm concerned for their health. I don't want them to suffer as much as I have. Through my illness, as little as they are, they have shown to be strong and increasingly independent with my absenteeism. I am truly thankful.

And thank you Rinne for the welcome.

TS

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TS, I'm concerned for my kids' health, too. I already have one being treated for Lyme, and she's doing GREAT! The good thing is, you already know the symptoms ... if they show any of them, you can have them tested and treated before they get sick like you are. It won't be like it was for you because you already know they have the possibility that they were exposed.

My youngest is nine .... so things on the home front are a bit easier for me. :) My oldest is 19 and away at college.

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TS,

I can understand the mixed emotions you have. Lyme sounds really scary, but the good news is you know what you are dealing with finally, all the puzzle pieces have come into place, and you can now start working on getting better!

Carla, that was well said.

(When did you get back?! How was it?!)

rinne, October was breat cancer month here and Rachel had to wear pink to work. She gave pink a try and ended up enjoying it...imagine that!!! :lol:

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Could you post it here too. Just do a copy. We've a running list here and I don't always get the update notices for posts on the lyme thread. :)

Thanks.

IGENEX IGM Result-Positive

CDC/NYS Negative

18kDa. -

22kDa. -

**23-25 kDa. IND

28kDa. -

30kDa. -

**31kDa. ++

**34kDa. -

**39kDa. IND

**41kDa. ++

45kDa. -

58kDa. -

66kDa. +

73 kDa. -

**83-93 +

IGENEX-IGG-Result NEGATIVE

CDC/NYS-RESULT NEGATIVE

18 kDa -

22 kDa. -

**23-25 kDa. -

28 kDa. -

30 kDa. -

**31 kDa. IND

**34 kDa. IND

**39 kDa. -

**41 kDa. ++

45 kDa. -

58 kDa. +

66 kDa -

73 kDa. -

**83-93 kDa. -

I anxiously await any feedback on this test. I also need to review this thread as I forgot just about everything.

And of coarse I will have a million questions later.

Thanks,

TS

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Thanks.

I got back yesterday. We had beautiful weather! It was in the 70's and sunny every day.

The hotel was very posh ... the Ritz Carlton ... had better cars than a car show! It was always interesting to see what was pulling up out front. One was a 1.7 million dollar Bugatti .... I mean, what does someone like that do?

I went to the spa two days ... I bought a three treatment package, and they split it up. One day I got a mustard/euchalyptus bath, then afterward they rub oils on you that have essential oils in them.

The next day I got a red algae body wrap and a deep tissue massage.

We were there for two full days (three nights), plus the afternoon we arrived. The first day the spouses had an outing to downtown Naples for shopping and we ate lunch at the original Tommy Bahamas. The next day I spent at the spa. :)

They had an outdoor mineral pool that was 98 degrees. :) It had special minerals in it, so it was like a fancy epsom salt bath outside in Florida! They had music playing under water so you could hear it when you put your head under, but you couldn't hear it if you didn't.

We wined and dined customers and got wined and dined by the vendor.

I ordered room service one morning. :)

Definately not out usual way of traveling! :P:lol: I felt good most of the time, but had a terrible pain in my neck that I took Vicodin for .... also needed it for the plane ride. I have one more pill left ... I hope that either the pain stops or my LLMD will prescribe me something because when I get it, Tylenol doesn't touch it.

Today it's all caught up with me .... I've been in bed all day with a fever.

We heard that Newt Gingrich was there ... at our hotel .... for something to do with the health care initiative ... let's just say, it's a good thing for him that I didn't see him! :lol:

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Hello All.

Today I went to the hematologist and we talked about what we are going to do. They took 4 vials of blood!!!! :o I don't know that that was a good thing since I am so low anyway...lol. We told him the last results when my ferritin was 4 and he was very surprised because it was so low again. We will call back on Thursday and he will call us on Friday with the results of the labs. I am getting more and more pale, so I wouldn't doubt I am more anemic than I was a few weeks ago.

We did talk about Iron IV's and he said that I will need them. I also asked about a PICC line because of my terrible veins and he said that is fine. (He went into the whole "there is risk for infection" thing)

It looks bad in the way of my numbers, but I just am not as freaked out about everything as I was the first time. I left his office laughing instead of the last time I could barely talk I was so worried.

On a positive note...I have been very busy with the whole raw thing and I LOVE IT!!!! It's only been today I have been 100% raw, but I really am enjoying all the "cooking". It's so fun!!! :P

TS,

Congrats on your diagnosis. It's not fun to have Lyme, but it's better to at least know what's going on. B)

Carla,

Are you back? Was it fun??

Kassandra

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Kassandra, I must have been posting when you were .... I just gave the details of my trip. :)

If you venture into nut butters ... my fudge is a raw food ... really! I think one of the sites I found it on was a raw food website!!

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Well said Carla and worth repeating. :)

And Truthsearcher I am glad you have found some answers. :)

Ditto & Double Ditto! :)

P.S. And another chimed-in "Stupid chemicals" :(

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So, be brave, you have a fight ahead of you. We're here for support.

Yes, Carla--I totally agree! And we also model for our children how to persevere under hardship.

Thanks also for the info on acid/alkaline. I copied and will check it over later.

Today I am off on my next trip, feeling better but not fully myself. Today I did repeat liver enzymes, pick up the results on my way out of town. Also I just took 2 days off meds this week, and do flagyl starting at lunch today. Last week it really hit me hard, hoping this week will be better and that I can handle my schedule while away.

TS, congratulations on the answer (or part of it!). I know there will be an adjustment and then a journey, we're here for you!

Sherry

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You don't know how appreciative I am to have this place to have put some more pieces of the puzzle together. I have used every ounce of energy to get to this point. I pray God gives me strength and resolve to now continue the fight for good health.

God will give you the strength. You have an answer now and can find a good LLMD and start treatment.

Beautifully said Carla. My kids are 4, 6 and 8 and I'm concerned for their health. I don't want them to suffer as much as I have. Through my illness, as little as they are, they have shown to be strong and increasingly independent with my absenteeism. I am truly thankful.

Sound like a good group of children. :)

IGENEX IGM Result-Positive

I'm glad you've got some answers.

Today I went to the hematologist and we talked about what we are going to do. They took 4 vials of blood!!!! :o I don't know that that was a good thing since I am so low anyway...lol. We told him the last results when my ferritin was 4 and he was very surprised because it was so low again. We will call back on Thursday and he will call us on Friday with the results of the labs. I am getting more and more pale, so I wouldn't doubt I am more anemic than I was a few weeks ago.

Does this mean you won't be starting IV's til next week? I'm starting to get worried about you.

Are you going to go up to the LLMD on Friday?

Yay on the raw foods diet going well for you. :D

Carla,

Glad you had a good time, but sorry you're not feeling well now. :(

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Carla,

Glad you had a good time, but sorry you're not feeling well now. :(

Thanks. It's not the Lyme .... I woke up in the middle of the night with an unproductive, dry cough. When I got up this morning I had it any time I stood up or walked, then I'd get nauseous if I wasn't lying down.

I have had a low-grade fever all day. I think I must have caught a bug while I was gone. Usually I have a Lyme flare after an illness, so that might be next .... couldn't take a sauna today .... I didn't realize I had a fever and got in, it made the nausea much worse, I lasted two minutes.

I was about 85% the whole time on the trip, except for the pain ... I took a Vicodin for each plane ride (the sitting in a crowded spot seemed to make it worse), then one other time ... took Tylenol once, too .... but other than that, no symptoms.

It's encouraging that I'm seeing such improvement, but it's hard to remember that on days like today.

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I have had a low-grade fever all day. I think I must have caught a bug while I was gone. Usually I have a Lyme flare after an illness, so that might be next .... couldn't take a sauna today .... I didn't realize I had a fever and got in, it made the nausea much worse, I lasted two minutes.

It's encouraging that I'm seeing such improvement, but it's hard to remember that on days like today.

I hope you don't have a flare after this. :(

Just got off the phone with Rachel a bit ago.

She had the appointment this afternoon to go over her challenge results. She had had a baby dose for the challenge and it did pull a lot of different metals. Mercury was the second highest. It was in the reference range but with the small dose, her and her doctor were happy that she showed some results...........to her and me that means she's at least excreting. :D

She has her first chelation on Thursday......another baby dose. They will gradually increase those after it's determined whether she can handle it.

She'll be trying to get on the computer, but if not we should hear from her on Thursday. Her mom got a new computer and she's got to learn the new system.

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Kassandra, what are you making on your raw food diet? Sounds interesting.

Carla, sorry you aren't feeling so well after your trip. I'm glad you had a great time away. Take good care of yourself, like I know you will, and you'll be back to feeling good like you were before :)

Sherry, can I ask how high your liver enzymes were elevated?

Andrea, thanks for the update on Rachel. I was wondering how she was doing, she hasn't posted in a long time it seems.

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Rachel-

I have problems with corn. Corn is hard to digest. Anything that is hard to digest, stay away from for a while. I ate only chicken soup and baby food for about 6 weeks. i am now able to eat raw vegetables and some other things like rice bread, rice products. I have only been gluten free for 2 months... It seems that if I eat anything that I didn't cook, meaning anything packaged- even if I know it is gluten free, I have a reaction. I know I can't eat soy, dairy, sugar, and probably potato flour.

Also, I would stay away from Carrageenan which is an emulsifier in many things including almond and rice milk that may give you a reaction.

Have you read the Gluten Connection? It explains how your immune systems mistakes some foods for gluten because the proteins in them resemble the gluten protein.

Hope this helps-

Nancy

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Kassandra,

Wasn't it well over a week ago, that they first said you needed iron IVs right away? They keep talking about how urgent it is, then they keep doing a bunch of nothing. :( What's up with that??? I hope I'm not making you feel worse about it- but I think somebody needs a flame lit under their butt to get things moving! Sheesh.

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Andrea,

That's right...no IV's until later this week or early next week. The thing is that he won't put the PICC line in until we get the blood work back, so at this point, I am sitting waiting for Friday to come. But then we are supposed to drive up north for the LLMD appt. At this point, I am worried too...what happens if we drive up north and get labwork back over the phone saying I need to get in ASAP. Then the earliest I can go in would be on Monday, but then I have an appt. with the GI Dr. because my hematologist wants to rule out malabsorption.

Carla,

I hope you get well soon! ;) I actually am able to tolerate almonds pretty well (well, it's all relative...if I had my ways, I would have a feeding tube...lol) so I will try your recipe. My only concern is coconut, it gives me bad D and other unpleasant GI symptoms. :unsure:

I also wanted to say to you Carla about the raw foods diet, I am having a hard time for dinner because I am craving protein. I want to make raw almond butter and see if that helps. I agree that being 100% is probably not enough protein for a sick person like me. :(

If I am craving cooked food, I am allowing myself to eat it. The only problem is I get bloated RIGHT away!! It's crazy!

Kassandra

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Sarah,

I know. It is ridiculous. The main reason they aren't TOOOOO worried is because I am not driving or going to school. If I was going to school, they would have probably hospitalized me by now. My hematologist said if the insurance won't cover the PICC line or the IV's (they didn't last time) he will admit me for 10 days. I hope we don't have to do that.

Julie,

I am eating a lot of raw fruits and veggies. I am having a hard time with not using turkey in salads, etc. I used to live on Boar's Head chicken and turkey lunch meats. For example today I had a green smoothie for breakfast (apple, banana, water, raw spinach). Then for lunch I had a "love the chicks pate" which is basically nuts and seeds grounded into a couscous kind of texture then I added tomatoes, onions, and bell peppers which all went on top of a plate of spinach. Then I made a raw apple pie...it was good, but a little weird. I am in the process of making home made raisins!! They are in the dehydrator right now!!! :D It's fun, but hard. You can't just grab a chicken breast and grill it really quickly. It takes preparation unless you just want fruit and salads...lol.

Kassandra

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Sherry, can I ask how high your liver enzymes were elevated?

Sure. Just slightly elevated.

SGPT 48 (Range 0-46 U/L)

SGOT 44 (Range 0-34 U/L)

This was last month's. I had a repeat this morning, and will post after I get the results.

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Carla, I know what you mean. When I feel ill, its like "here we go again." I get discouraged and forget that overall I have had better days than I used to. I chomp at the bit to be better and stable all the time.

I am hoping I won't herx so bad this week, took my first dose of flagyl a little while ago. Last week it hit within two hours.

Your trip and the pampering sounds so nice!!! I am looking forward to my trip the last week of the month--I'm going to do that massage again!!

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Someone here I think mentioned Chinese herbs. There is a doctor in New York (Dr. Chang or Zhang??) who treats lyme with Chinese herbs. Used to have a website.

Generally, the issue with TCM is that the secrets of healing tended to be kept by the practitioner, so there wasn't so much of a shared knowledge base. That is better now than before, however, here in China, you still have to seek out the better practitioners, and those who are especially good with whatever problem you have. That can be a huge challenge.

Then there is the variation of the herbs and potency, and how they are prepared.

I haven't sought it out much even though I am here, because I am concerned about mixing the western and eastern approaches. It is already so complex and so many variables. My LLMD is open to my using Chinese medicine, he just wants a copy of the prescription so he knows what herbs are in it.

I did take Chinese medicine for awhile 3-4 years ago, but not recently. I remember that it really helped me eliminate fully, so I think it could be worth trying.

One thing that is really interesting to me: the several different Chinese medicine doctors I saw here all told me I had intestinal problems. I said, no I didn't. But then two years ago I began having nausea, and then I started to admit that I did have intestinal motility and constipation issues, and bloating which were all very long-term issues. And then last spring discovered the gluten sensitivity and double celiac genes (so am probably celiac.) It is amazing to me that without my having complaints the Chinese medicine doctors picked this up.

I am considering seeing a doctor for abdominal issues that my students want me to see, but I think I'll wait until after my visit to the USA.

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