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Rachel--24

Omg...i Might Be On To Something

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Also, was anyone on the thread where "frisked by a wookie" came up. It had many connotations. If someone looked horrid you could say 'whoa, you look like you just got frisked by a wookie" :lol:

:lol::lol: I was on that thread! Funny!

Someone tell me that feeling this crappy is a good thing, it will pass and it's just the antbiotic doing its job.

Sounds like you're on the right drugs. :rolleyes: After you have your first cyclical herx, you should feel some relief. At least I did.

With the amoxy I've felt pretty constant discomfort, but I haven't built up to the full dose and haven't had my first regular herx on it yet.

You might try the coffee enemas, or if you have access to FIR saunas ... detoxing is about the only thing that can make the herxing go faster ... Lemon water helps a little, at least with the acidic feeling.

Other than that, sleep, sleep, sleep.

Dear Carla,

From what Alison told me, she is afraid of her posts being deleted. I should go check out the thread. I just feel so bad for her. I do not know why people have to pick each other apart like that. I know it cannot be peace and harmony all of the time, but I cannot understand why a group of people have to fuss at someone that way. CAN'T WE ALL JUST GET ALONG?

Here is Scott's post on that thread (I bolded part of it):

Last, whenever there is a community as large as this one there are bound to be disagreements and disputes such as what occurred in this thread. I don't believe anyone should be surprised by this, and I certainly don't believe that anyone should leave the board because of this, however, if anyone makes such a decision please don't try to dramatize it in a post to the board and blame it on specific individuals in order to make them feel guilty--that isn't information that should be put in a public post and is exactly what the PM (personal message feature) is for. Sorry if some people don't know what I'm talking about here, because the post I am referring to is now gone.

Yay! More popcorn! Movie popcorn is the best! It is loaded with junk, though! I heard somewhere that it actually has as much cholesterol as 27 Big Macs! :o Now that is scary! Shrek, George, popcorn, Adam NOT wrecking the BMW, and ice cream all in the same week! It cannot get much better than that!

:lol::lol: Not only that, Adam just got the Beemer back from the shop, so it looks like new ... oh, yeah, it IS new! ;)

Some day I will try one of your mojitos. :P:)

I love mojitos! Cheeseburger in Paradise has great ones.

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U can't have a gluten-free beer? Hmmm it's obviously not the alcohol - [paging Miss Mojito!!! Miss Moe-HEEEEEE-toe!, please pick up the white courtesy phone!]

The fermentation? But didn't u post in a hard cider thread? Hmm maybe none of that for u either.

Lookee here silly, I CAN have gluten-free beer. bought a six-pack at the Stanford conference last summer, and finished it about a month ago. They are like gold...I just have one occasionally. Beer used to make me feel so sick (natch:)) that it's not my favorite. Ugh, imagine drinking beer out of a plastic cup - - - a red plastic cup - - that would make me HURL instantly (college keg parties).

You mean I can have hard cider? what? no I don't think I posted there....mostly a red wine drinker, then moe-heeeeeeeeeeeeeee-tos in summer.

Am just about to make a virgin one. Donna, come over. :) Am making C D's for people. Am askeert to mention other artist I like, Tom might say somethign spooky :ph34r::lol:

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OMG- Nepenthe and Big Sur...I'm going to cry!!!!!!!!!!!!!Kurt and I used to go have lunch on the deck. :wub: :wub: :wub: :wub: :wub:

Tom and Susie- What a strange seredipitious coincidence.

OK- I'm scared. Honestly. I fell asleep for about an hour a nd a half and I woke up terrified. Are herxes really supposed to be this bad? I don't get scared by feeling ill that easy and I'm terrified right now. If this is a herx, I feel completely horrid. :ph34r:

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Lookee here silly, I CAN have gluten-free beer.

Am making C D's for people. Am askeert to mention other artist I like, Tom might say somethign spooky :ph34r::lol:

I distinctly recall a "Harumph" regarding not having beer - unless it was a pizzarumph. Sure looks like a beerumph.

Spooky LOL :lol: Boo!

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OK- I'm scared. Honestly. I fell asleep for about an hour a nd a half and I woke up terrified. Are herxes really supposed to be this bad?

Yeah, they are that bad. :( Wish I could tell you something different.

If you feel too bad, you might want to call your LLMD's emergency number.

I get weepy during a herx ... and I never get weepy. I also get obssesive thoughts worse than normal. I don't get terrified ... but I do get mental symptoms.

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OMG- Nepenthe and Big Sur...I'm going to cry!!!!!!!!!!!!!Kurt and I used to go have lunch on the deck. :wub: :wub: :wub: :wub: :wub:

:( I know....me too. But you'd better head to Ventana next time - - - about one million times better than Nepenthe...and less publicized.

Bev - - - I know everyone is so anti-drug here :ph34r: but I DO take a tranq. if I get glutened.....that is, if I have to be at work or something. It is the only thing that will shut my brain down.

I am sorry you're feeling so badly.....

I distinctly recall a "Harumph" regarding not having beer - unless it was a pizzarumph. Sure looks like a beerumph.

Spooky LOL :lol: Boo!

REAL pizza and REAL beer Harrumph. yes, correct! Boo!

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I know everyone is so anti-drug here :ph34r:

:lol::lol: Do you have any idea how many drugs I'm on!?

I'm anti-unnecessary drugs ... I think they're WAY overused ... but sometimes they are necessary.

Some people take Benadryl for herxes. I never have ... I don't like the effects of Benadryl ... I ONLY take it when I have sinus problems to avoid a sinus infection.

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OMG- Nepenthe and Big Sur...I'm going to cry!!!!!!!!!!!!!Kurt and I used to go have lunch on the deck. :wub: :wub: :wub: :wub: :wub:

OK- I'm scared. Honestly. I fell asleep for about an hour a nd a half and I woke up terrified. Are herxes really supposed to be this bad? I don't get scared by feeling ill that easy and I'm terrified right now. If this is a herx, I feel completely horrid. :ph34r:

Another Nepenther!! [Edit: Or Ventanite? Hey any patio will do - oh wait, one's on the wrong side of Hwy 1? The patio right on the cliffs is the one for me.] Maybe someday we get a live OMG meeting there! BYO-R?

Try to refrain from feeling terrified. It really is supposed to be horrid. The worse it is, the greater the critter-cide. In fact, they've sent an envoy to United Bacterium to deliver a communique requesting immediate intervention.

But seriously, I don't know where a line could be drawn between "expected horrid" and "is this more than a herx?".

Someone w/ a more recent herx might/should be more helpful.

I still had haunting memories of pre-gluten-free symptoms and the herx, tho rightly called horrid, wasn't near the same league as those. No diminishing a solid herx - I think they're often worse than the worse flu someone ever had. And thoughts of the "omg just kill me already" variety might be common.

Hang in there - you'll feel horrid temporarily. The critters are dead forever.

Oops - who guessed the R in BYOR?

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Part 1

Ok...so the movie was good...it was gonna have to be a really good movie to get my mind off scientificness. I totally didnt think I could sit through a movie...but I did...and scientificness left the building. :P

Donna....yeah...LED. I had posted alot about it a couple months back. Scott said he has just posted an article on his site about it...with more detail than what was previously available. Its probably what you saw on LymeNet.

On the way to my appt. my mom was wondering if the testing will show alot of improvement for me. I told her that I suspect I will have all the same issues...and in the same order of significance. I did not feel that anything has drastically changed so all should be the same but I was worried about new stuff showing up.

My results were the same...with my primary organs of stress being the brain and liver. Last time the kidneys were also under stress but that was from all the NDF I had taken. I'm not having that problem now and I've been completely off NDF for a few weeks now by choice.

The main issue is metals...and of course yeast which is being held in my body by the metals.

These two things are really the main things significantly impacting my health.

Lyme and Babesia were very weak....they were not showing up strongly at all. My results were pretty much identical to what Scott was picking up in the first session...which was almost nothing. Dr. Amy said that Lyme isnt a major concern for me right now.

Both the babs and Lyme again are showing up only in my head area. She said the rest of my body is totally clear of the infections....same as last time.

I really dont have many symptoms outside the the head/shoulder region unless I eat poorly. Any chemicals or molds can spread the pain to other areas but it generally stay in my upper body.

So the report says Babesia and Borrelia (resonance in the brain only).

I asked if she felt it this was because of my amalgams....that this would have been where mercury was originating from. She agreed that the head region is my most toxic area and this is where the "bugs" will hang out.

Hopefully it doesnt mean theres alot of mercury in my brain though. :unsure:

She was very pleased with my CD57 and its another indication of Lyme not being a major player right now. She did say that the CD57 could go down if we dont get these metals out. Its extremely important to clear these out of my body as soon as possible.

This was my feeling as well...I would bet on the fact that my CD57 would have been higher a year ago. I feel very certain that if given more time Lyme will continue to gain ground.

I think this is how someone eventually becomes overcome with the infection....enough stressors put on the immune system will allow that CD57 to fall.

I feel my immune system is still very strong at this point.

We discussed everything I'm doing and I mentioned the coffee enemas, my sauna is being shipped (should arrive this week), castor oil packs...I forgot to mention the epsom salt baths though. I talked to her alot about the charcoal too.

When we were going through my supplements she asked about the NDF. I told her I'd decided to stop taking it and focus on detox...the saunas, enemas, etc. She was VERY pleased with this and felt that it was the right thing for me to do. :)

Scott commented to her that he should have had me write his article on detoxification because I'm doing all the right things. To me that was a HUGE compliment and definately makes me feel as if all my "homework" is paying off. I feel more confidant than ever about the things I'm doing right now.

Its a HUGE learning process that is totally on-going but I dont feel "lost" at all. I cant imagine how I would have understood these appointments without having done some research...it would be way over my head. :huh:

We talked alot about the coffee enemas. I told her about my reactions to the release of toxins. She said there is alot of toxins being released with the enema but she suspects that it may have more to do with the amount of coffee I'm using (3 tablespoons). She said 15 minutes is a good length of time to be holding it but with that amount of coffee and with the level of sensitivity I have...it could easily be triggering those reactions.

She wants me to start out at 2 teaspoons (a very small amount :unsure: ) and gradually work my way up to the 3 tablespoons...which she said is pretty much the max for coffee enemas. So I started out too high. I racheled the coffee enemas. :ph34r:

She said using a small amount is just as stimulating to the liver. She also asked what kind of coffee I was using. She said there is a "green" coffee that she has been having patients use that seems to be working even better for detox. She's gonna give me the name of the website where they are ordering it from.

I asked the normal questions regarding enemas. Can they interfere with normal bm's if taken too long? Do they really work as far as removing toxins?? She said yes....they are very effective for detox....no they are not harmful. Cancer patients have used them daily for months or longer and then still return to normal bm's.

We talked alot about charcoal. I asked her if it could be causing constipation?? She asked how many I'm taking? I told her about 4 a day. She said YES...this could really constipate me. :ph34r:

Charcoal binds with everything and too much can cause constipation. I told her I just felt like I *need* to have some in my system at all times. She said that its true...and definately good to have some there to absorb the toxins but there are alternatives which can do the same and not cause constipation.

She wanted me to reduce the charcoal. Later on during testing she said "OMG...you're body just loves charcoal!! :blink: She said she tried every alternative and they are all "no-goes". My body hates chlorella...no need to even try it a 3rd time she said. My body doesnt want anything to do with any other binders.

Anything that has "color" or comes from a plant and my body just totally rejects it! :huh:

See.....this is what I've been saying for months...my body hates the "healthy" stuff. I cant do any enzymes or plant related stuff...heck I cant even eat veggies. :blink:

She said she has another girl who is about the same age...same presentation as me and she cant tolerate these things either.

Since my body responded so well to the charcoal she doesnt want me to reduce the dose afterall. Instead she is putting me on OxyPowder to counteract the constipation. I guess Scott takes this and it works well for him. She tested me for it and it tested fine.

She tested my Vitamin C and sure enough...my body hates it. Thats the one I suspected had given me mouth blisters. <_< It was the absolute "cleanest" form of Vitamin C that I have ever found in any store. No corn residues or anything. She was surprised that my body was responding so poorly to it....I've tried Vitamin C several times and its never been a good thing. :(

My supplements to avoid are:

Glutathione......this is the one I posted all that scientificness about!! :blink:

I dont currently have this supplement but it was something she wanted to put me on and my body totally rejected it. :(

However, the N.A.C....which I bought and started taking last week (as a precurser to glutathione) tested very well for eliminating the metals. :)

She wants me to increase my dose on this one. Eventually my body will be ready for glutathione itself but right now its saying NO.

Other supplments to avoid:

Vitamin C

Chlorella

Modifilan <--------this is the one that is from seaweed which I had very bad reaction to (similar to my experience with chlorella). She said they are both from algae and my body doesnt do well with these things right now.

She really wants me on milk thistle (another one I reacted to) and the glutathione so she wants Anna to check me for those in 2 months and if there are problems to have her try desensitizing me to those items.

I had bought Alpha Lipoic Acid but didnt take it because I'd read that it formed a weak bond with mercury. She doesnt want me taking this one at all and said it could redistribute to my brain.....which was my main concern with that one after what I'd read.

The Transfer Factor (LymPlus) I'd been reluctant to take because it contains yeast. Anna wanted me taking it once a day. Dr. Amy said due to the yeast (even though its a small amount) she only wants me taking it twice a week.

She does not want me taking the Kyolic garlic extract I'd just bought. :( It wasnt testing poorly but wasnt showing up as a great treatment for the yeast either. It really wasnt having much affect on my body right now...positive or negative. She said because of its high sulfur content she'd rather leave it out for now. She wants me to continue with Nystatin throughout entire treatment.

Everything else is still working for me....no change in my lyme/babesia treatment. I'll still be taking Samento and Noni for those.

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Part 2

She said chelation is actually not going to be useful for me right now. A chelator is not what my body needs the most in order to deal with these metals. The issues are with my pathways. Its essential that I get on B12 to try to open up my methylation pathway. Later on chelation will be more useful.

We discussed this at my last appt. and now she's ready to have me on B-12 shots. She gets B12 from a compounding pharmacy...the best qualtity she knows of. She said some of the other patients have improved tremdously since getting on the B12. Scott is also on B12 shots but he didnt seem to have drastic improvement from it....although his issues are alot different from mine.

By the way...he said he's hovering at about 85% now. He said this last phase seems to the hardest for him...although he's no longer testing positive for the infections anymore and his CD57 has gone up quite a bit. He still has to get over this last hump.

The autistic kids shes treating really start improving with B-12...the B12 is necessary for the metylation pathway and the pathways (being open) are essential for mercury detox. I have the same problems as the autistic kids with not being able to detox the metals through the pathways.

Yeah...how many times have I heard this already. :lol:

I dont know if I told you guys but I had to go through the ADD/Autism panel at BioSET. I had problems with most of the panel. Surprisingly gluten wasnt in the panel. :huh: Casein was though....and yeah...I did not do well with it. :(

The therapies she recommended were:

Coffee enemas = 3 x weekly

Castor oil packs = work up to daily

Sauna = daily

exercise

Basically I'm already doing those things....but definately need to figure out how to get some exercise in. <_<

She'd rather me spend less time on the computer due to added stress from the computer reacting with the metals in my body. It does happen sometimes but not consistently and apparantly not bad enough to keep me away. :P

So thats the results for today. :)

I talked to her about the food/mold thing absolutely driving me crazy!! :angry::angry:

She said because of all the metals in my body...and not really having anywhere to go....any molds or yeast entering my body will be binding with those metals. The molds and yeast cant leave my body while these metals are here.

So yeah...my body can handle the metals alot easier when the yeasts and molds are binding with them. The problem cant be corrected without getting rid of the metals...which is what we're going to do. :D

So there is a plan...and I'll be starting new things very soon.

I have to surrender the computer for awhile....but the rest...which is mainly new treatment and other things we discussed I'll send in email later. :)

I'm kinda scared of having to give myself daily B12 shots :o ...... but her and Scott both said its no big deal. He said the shots from this pharmacy are really small and easy.

Oh...she also said that even though the Lyme and Babs are basically stuck in my head right now...as my body starts detoxing from the mercury and yeast...those infections will eventually come out of this region. She said to not be surprised if later on I start to feel strange sensations in other areas of my body that havent really been giving me problems so far.

She said that as the infections come out and my body starts getting rid of them...there will be symptoms in other areas...away from my head.

Scott metioned that with his genetic testing he falls into the worst category "multi-susceptible".....meaning he's susceptible to the Lyme toxins, mold toxins. metals, etc. I told him that I'd probably fall into the same category but he said I most likely would not be "multi-susceptible".... that I dont appear to be susceptible to Lyme toxins very much at all.

Dr. Amy agreed that I am detoxing from the Lyme much easier. She said that its a different method of detoxification for the Lyme toxins and I'm coping with that quite well. :D

YAY for that!! :D

I know I've always said from the start that I dont feel Lyme is affecting me very much...if at all...but I definately dont mind hearing it from the Dr. :)

I dont think I'll ever tire of hearing those words!! :P

I only have 3 new supplements getting added in....something called Burbur Detox (to support detox), OxyPowder (to keep bowels moving) and B12 shots (essential for detox).

This is a monster post but I'm really happy with how well everything went today!! The stuff about LED sounded really great too. It was just so exciting to me to have her come up with this for me and to say that I'm a perfect candidate because its exactly how I felt the first time I read about the treatment! I just felt very strongly that it would be really good for my situation.

I'll write more about that stuff in my email.

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REAL pizza and REAL beer Harrumph. yes, correct! Boo!

D'oh! I thought it was still about Whole Foods Los Altos pizza & beer night!

You sure can jump track quickly w/ little notice to the passengers.

[non-sequiter]

At least it wasn't one sentence like Falstaff & Sangria w/ Crisco! :lol:

[/non-sequiter]

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Rachel, sounds great!

I wouldn't worry about the B12 shots ... the bicillin injections I had trouble with was only because they were HUGE shots. It wasn't a problem with the needle at all ... it was a problem absorbing the thick liquid.

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Wow Rachel, great couple of posts.

And with the "Scott commented to her that he should have had me write his article on detoxification", how can u NOT be Scientific Spice????? :)

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D'oh! I thought it was still about Whole Foods Los Altos pizza & beer night!

You sure can jump track quickly w/ little notice to the passengers.

[non-sequiter]

At least it wasn't one sentence like Falstaff & Sangria w/ Crisco! :lol:

[/non-sequiter]

:rolleyes::lol: he said non-sequiter

Wow Rachel, great couple of posts.

And with the "Scott commented to her that he should have had me write his article on detoxification", how can u NOT be Scientific Spice????? :)

indeed!

RAchel - great info, geat appointment! - - - must read again to fully digest - lots going on......

too bad we didn't live closer, I have given lots of people shots, and even my dog. Loved it......

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And with the "Scott commented to her that he should have had me write his article on detoxification", how can u NOT be Scientific Spice?????

:lol: Today I'm feeling a bit like "Scientific Spice".....but who knows what I'll be like tomorrow. :P

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Whew! I think I've been reading for an hour. That'll teach me not to go shopping.. :P ....we were only almost completely out of food.

Rachel,

Sounds like a super productive appointment. Can't wait for the email. :D

Susan,

Glad you are back on and posting. :D

Any appointments this week for anyone?

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Great appointment Rachel!!! Very exciting!

I am just amazed by all of it really. What's more amazing to me is that lyme ISN'T a big problem for you and it DOES seem to be for me. I am just astonished about that. :unsure: I think I will definitely call tomorrow to see if I can get on the list to see her next time.

I've never given myself shots, but have given two of my dogs LOTS of insulin shots. So where to you give yourself the shot? I thought it was in the cheek (not the ones on your face :lol: ) . Seems like it would be hard to give it to yourself there so you must be able to give it elsewhere.

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Any appointments this week for anyone?

Nothing special for me...Wednesday is my regular ole PT/chiropractic appointment, which I NOW only have to go every other week for. :)

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... and you wiped the silly dingo smile right off my face!

I would like it if you told us more about your brothers, if you feel like it. :)

The Coast Gallery....if I am thinking correctly, it's the super-modern absolutely gorgeous structure almost directly across the street from Nepenthe? It is owned by Greg Hawthorne - - is that the name?

[edit - I am speaking of Hawthorn Gallery - extremely wondrous -

http://www.hawthornegallery.com/ ]

:o really astonished here!

and The Cotton Club? HOw old are you? Where did you come from? Who even knows about that any more?

We need a photo!

Well, what's it gonna take to re-smile the dingodame? :)

The Coast Gallery is about the last thing u see heading south until a turn-off to Hearst Castle. (Ok I know that's not true - isn't there some other little town b4 San Simeon?) Left side of the road, tucked up against the cliff - last thing in that stretch around the "town"/P.O..

I have plenty of photos of friends and family so I suppose they have plenty of me. But I don't have a regular one of me. Did find something I'll put up tho. But it'll only lead to more questions!! :lol:

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I've never given myself shots, but have given two of my dogs LOTS of insulin shots. So where to you give yourself the shot? I thought it was in the cheek (not the ones on your face :lol: ) . Seems like it would be hard to give it to yourself there so you must be able to give it elsewhere.

You give the b12 in the upper arm or the thigh. :)

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Susan,

Glad you are back on and posting. :D

Any appointments this week for anyone?

:o:lol: um, are you SURE about that?? :)

forgot to tell you guys, had my bone density scan (per GI's request) two weeks ago....just got results. Shows medium risk in LEFT hip and upper thigh....that is so strange, bc my RIGHT hip and upper thigh are always killing me......maybe the girl at doctor's ofc. was reading wrong?

so I have to start Actinel, I belive they said? I was relieved that this was all that was wrong....I do think that 20 years of VERY harsh weight-lifting may have helped...dunno.

Appointments this week, Mama Spice, I am meeting with my fourth Celiac from my GI's office! I love helping the newbies. Also have consulted with two others by phone.

Well, what's it gonna take to re-smile the dingodame? :)

The Coast Gallery is about the last thing u see heading south until a turn-off to Hearst Castle. (Ok I know that's not true - isn't there some other little town b4 San Simeon?)

I have plenty of photos of friends and family so I suppose they have plenty of me. But I don't have a regular one of me. Did find something I'll put up tho. But it'll only lead to more questions!! :lol:

:lol: the dingodame

I do know Coast Gallery. Did like the room w/ ARthur Miller's paintings - tho he is quite a demented writer and I do NOT endorse his writings....

Our man Tom is a hoot, we'd better keep him.

more questions? are you dressed as a woman? :o:lol:

*****

confession - - I have padded the OMG thread with nothing but goofiness. So sorry for the pages and pages you have all had to read......will compress. ;)

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Just a drive by for me. Yeah, I know I've been MIA, but I've got other things on my mind!

Rachel, your appointment sounded really good. Are you doing castor oil packs everyday? Which reminds me, I promised to give my easy version of castor oil packs. So, here it is:

What you'll need:

Castor oil

wash cloth

hot water bottle (what a great invention!)

hot water

towels

plastic bag or wrap

1st, get everything you need by your bed. Put a towel under where you will be laying down in case any oil spills. Have your castor oil, wash cloth, plastic bag (I use clear), and extra towel ready. In the meanwhile, get your water hot. It doesn't have to be boiling. Once it's hot, put it in your water bottle and take it to bed. Take your clothes off and lay down.

Next, pour the castor oil directly on your belly. I mostly do mine for my reproductive organs, so I put the oil between my public bone and navel. Spread the castor oil over your belly. Wipe your hands with the wash cloth. Put the plastic bag over the castor oil. Put a towel over that, and then put the hot water bottle down. The towel is to keep the hot water bottle from burning you. Cook for 15 minutes or longer.

When you are finished, just take the bag off, and turn it inside out. Then, use the wash cloth to wipe off all the castor oil. I normally do this right before bed, so I'm all relaxed and don't have to get up once I'm done. I just toss out the plastic bag, throw the towels on the floor and pass out.

If you don't feel comfortable having plastic directly next to the castor oil, rather than doing the traditional flannel soaked with castor oil, I guess you'll have to do it the old fashioned way. For me, convenience is better. I never got the flannel cloth thing down and otherwise, I'd never do them. But it's hard to get excited about castor oil packs when it's hot out :rolleyes: .

And what's this about shots? I'm going to be doing a lot of those soon!

Claire

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um, hallloooooooooooo (raising hand),

wanting to know the purpose of Castor oil packs.

Would they help my brain, in any way? because I will soak my head in Castor oil if it will improve thinking.

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......maybe the girl at doctor's ofc. was reading wrong?

confession - - I have padded the OMG thread with nothing but goofiness. So sorry for the pages and pages you have all had to read......will compress. ;)

Don't u dare!!

And I bet someone reversed something on the bone scan. ["What? We're supposed to get *all* of them perfect?"]

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