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Do you all read on Lymenet much? That is where I got my LLMD referral, but find the forum confusing to get around.
What Lyme forum do you recommend for ease in reading a getting around. You would think with all the Lyme brainy people it would be very simple.
But I did bookmark many of the links recommeded here and read a little each day.
Also the secretary told me to bring any pertinant records to the first LLMD appt.
Can you share anything to make the appointment go smoothly. I'm afraid I'm gonna be stuttering and have mental blocks while there and forget something really important.
I am taking my husband with me to be my second set of ears cuz it's like I hear everyother word and then forget all the rest
I don't read lymenet much anymore...I found all the bickering too much for me to handle, but I do go over almost every day just to see if any threads look interesting, and I'll pop into those once in a while. I also generally stick to the medical question section.
Yes, bring copies of any of your recent lab work. I also brought a list of symptoms because I can never remember ALL of them off the top of my head, and I wanted them to see the whole picture. Doctors generally zoom in on the most annoying symptoms, but I think that was one reason why not one of them could help me feel better...it's because they weren't getting the whole picture.
Taking someone with you is an excellent idea. I didn't have anyone available to go, but I definitely took notes.
I dont have too much brainfog these days...but anyone can get overwhelmed with alot of info. at once.Yep, yep, yep!
Plus, take all your testing records there so they don't have to redo a test.Yes, there were several tests my doctor didn't have to do because I had just had lots of testing done. Since I handed him copies of my recent thyroid tests he only needed to test for the antibodies.
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I am disappointed about the testing on the co-infections though. The secretary told me that in NY state they are not allowed to test for all of them. Has anyone run into this problem before and what to you do in a situation like that?
I also wanted to say I'm sorry for not posting on the OMG thread. It's just too busy for me. I can't keep up, I get all disconbobulated sp? and get all messed up in the head. I can read one or two short posts and by the time I get to the third forgot what the first post was talking about. It's all great stuff I wish I could read it. It might be different if I could understand how to use the tools to highlight and stuff but even that is like rocket science to me most days.
Well, I haven't been tested yet for any co-infections, but I don't think it's because it's not allowed. I think my doctor just wanted to get me in a healthier state before we did that. He was also trying to save me money I think so didn't want to order it until after we saw for sure I even HAD lyme, lol. I had some muscle testing done for that...actually had the muscle testing done first, and didn't believe it because he was the only one who said I had lyme...based on that, I went to have the Igenix testing done to prove him wrong, lol. Turns out I DO have it, so I can probably be pretty certain the co-infections he found were correct also.
Don't worry about not posting on OMG...it can be very overwhelming on a good day. I've had to take a few breaks from the board just because my brain isn't able to handle it all, so don't feel bad!
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Okay here are some links:
Open Original Shared Link (doctor referral)
Open Original Shared Link
Open Original Shared Link (the flash discussion is the message board area)
Open Original Shared Link
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But, does anyone know about how much the Igenex tests cost and how to order them? Will they send me the test to take at home or do I have to get the doctor to do it? Also, how do you find an LLMD? I live in Texas. Thanks again.
The Western Blots (there are two) run about $190 (for the both of them). My LLMD had the tests already so I didn't have to order one, but I think Carla ordered hers from Igenix then had one of her doctors draw the blood and sign for it.
I think there are links to Igenix, lymenet and a link to look for doctors on the first page or two of this thread...if not I'll post them later. Lymenet has a section for "seeking doctors" that you can try. I actually found mine because I live in the same area as Rachel, so I just went to hers, lol.
I just want to echo what Carla said...my LLMD didn't automatically assume I had lyme, he looked for a BUNCH of other stuff too. I think he was almost as surprised as I was that I actually had it, lol. But he checked for my essential elements, thyroid, mold toxicity, metals, etc. Currently, we haven't even begun treatment for the lyme yet...we're still trying to get the burden off my body so I can handle it, lol.
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Sorry, I forgot to look for the neurotransmitter info, lol.
We also got into another disagreement about antibiotics and lyme, but at that point I was almost completely out of it. Mom's put her foot down and said that I have to try everything natural before we'll even consider doing abx.All I can think of is what a waste it will be, and how much time I'll lose with college looming up on me in a little over a year and a half. I really don't want to do anything without consulting the LLMD, I'm pretty sure I'm going to put my food down about that. The main nurse there worked with a lot of alternative things, I need to dig up her phone number sometime.
I'm sorry about the disagreement. Just wanted to say that even if you only get to go the herbal route first, it isn't necessarily a bad thing. I haven't done antibiotics yet at all, just herbal stuff, and I DO actually feel better than I did last year. Of course, I'm also doing other things to support my body functions and systems, so maybe that's what's helping.
Now, I also should say that my situation may be slightly different than most because I was so sick starting in about 2002...I was on continuous rounds of antibiotics for sinus infections (didn't have any idea about lyme back then). Even though that antibiotic is not usually used for lyme treatment, I do think it may have knocked it back a bit.
Does anyone have any ideas on how to get rid of this terrible neck pain?! I am dying over here....I have done epsome salt baths, pain killers, hot packs, cold packs...to no avail.
Oh those doctors!!!! Sheesh! You really need ONE doctor who can coordinate the whole thing! It's so very nice to have doctors that actually talk or communicate in some way with each other.
About the neck...I've not found ANYTHING that takes the pain away completely. On a scale of 0-10, on my best day the pain is around a 3 or 4. The thing that has helped the most is seeing my chiropractor in conjunction with physical therapy. They are having me do stretches and range of motion exercises daily, and that helps keep things loose. I also put heat on it before I do the stretches. I'm also doing a kind of home traction.
Did anyone see the thread on LN about "bucky" the pillow thing you can microwave? I made one today out of rice...it's my new best friend!I can even talk to it...and it will love me unconditionally!
I haven't seen that thread yet, but I LOVE my microwavable bags. I have several and I use them all, lol.
Do know when you will get the results for your saliva and urine tests? They seem to take at least two weeks. That is a long time! I will be anxious to hear if your melotonin is better. I think if one of those is messed up, they all probably are. When one is out of whack, the rest follow suit.Yeah, probably about two weeks, although the last ones from this lab came in a lot sooner than that I think, but with all the holiday backlog, I'm trying not to expect it, lol. Yeah, my melatonin was off on both of the tests I've taken so far. I'm pretty sure I'll have to take supplementation forever, lol.
I am still laughing about the Splenda packet! I do things similar to that. Are you ever in middle of something, and then you are like "What am I doing?" That reminds me of that new car commercial.You know, the one where they are singing Duh in the tune of "Carol of the Bells?" For some reason, when I see it, I think of doctors.
OMGosh, I love that commercial, lol. Yeah, I've that that "what am I doing" moment many times.
What am I doing, where am I, what the heck, who am I.... the list goes on and on.
Were the parasite pics on the site for Humaworm or the Natura? Regardless, I doubt I would want to see that! The whole idea is icky. I am not a fan of parasite pics. Now, I am into microbiology, but there are some places I do not want to venture.The Natura site...and I think it was just gunk, not even worms. REally scarey stuff, lol. Did I mention YUK!
MSM is a form of sulfur which will help your body to remove the mercury. The initial dose is one capsule twice a day. Increase by one capsule a day until you are at three capsules twice a day. If you have root canals and are chronically sick you may want to increase to five capsules three times a day.Thanks for the info Mia! I have root canals...my old (retired) allergist wanted me to take msm. I may still have some somewhere, lol. I never really took it for long because I had the powder form and it tasted bad.
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well, it's not bad, lol. I just had some...made quickly in the microwave. I took a heaping spoonful of the cocoa powder, added a little water (just a little) to make a rue (sp??), added some agave nectar, then boiled some water and coconut milk in the microwave...when that was done mixed it in slowly to the cocoa powder rue. Still gonna take some experimenting to get the ratios right. This wasn't bad, but still needs work. May also try it on the stove...when I have some energy, lol.
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I'm currently experimenting with coconut milk. I buy pure unsweetened cocoa powder and add a little bit of agave nectar and some coconut milk. I haven't quite got it perfected yet though, but it's promising. If you can do sugar, that might make it easier to get right, lol. I shouldn't even be using agave.
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Maybe I'm just a hypochondriac and everything is all in my head. What do you guys think?
I think this sounds familiar! I don't even live in tick country, so never thought it could really be a possibility, but I sure enough have it. Your story is also familiar to many of ours because we weren't getting better after eliminating so many things. I think with your history should you should definitely look into it. Make sure you do your testing through Igenix and if possible see a doctor literate in lyme (LLMD).
You can also drop by the OMG thread (the one that's over 1600 pages long, lol), in the leaky gut section. A lot of us there have lyme and we discuss it along with the many other things that many of us have going on, including leaky gut.
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Who knows...maybe someday I'll try the Humaworm but I've sort of had my eye on Dr. Natura for awhile now.
Okay, can I just say YUK!!!
I went over the the website and they've got PHOTOS. I mean it, YUK!
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Aw Ami, I'm so sorry!!! I know the feeling of just wanting it to be all over with.
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Donna....not even if it were sparkly pink e-coffee???
Not EVEN!!!
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Adam felt like he had a hangover.
Okay, so maybe a little bit of this too, lol. I was going to have a little bit of decaf coffee this morning and I picked up a splenda (I know, I know) packet, which I intended to open and put in about half...what I did instead was throw the whole packet in the cup...WITHOUT OPENING IT...just threw the paper packet right in the coffee.
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Okay, I'm now certain that the achiness and runny nose were from the humaworm. I feel absolutely fine this morning so far. The achiness is gone and so far no runny nose. BUT, one GOOD symptom I have today. Sense of smell! When I went gluten free, I did notice I started to get whiffs of stuff, but this is different!
When I get to work every day, I make 4 pots of coffee. I mostly don't drink the stuff, but I try to help out our receptionist who has to make the coffee in 5 kitchens...so I make the coffee in the one by me. Anyway, I grind the beans and make the coffee, no big deal. Today for the FIRST TIME EVER, I actually SMELLED the coffee as it was grinding! AND, smelled it while it was brewing. How weird is that. It must be all in my head.
Today's weird symptom is a "burn" on my elbow. It looks and feels exactly like a burn. It's round and about the size of a nickel and it burns like heck. It's red mostly, but when I look at it with a magnifying mirror, it's actually lighter in the middle. Sounds a little like a bullseye rash doesn't it?! I know the bullseye rash doesn't hurt, so I'm sure this isn't one but weird huh!? Anyway, I've had this once before I think a long time ago, but I don't remember there being a mark, and of course I have that sunburn feeling that happens, but that is all over my skin and there is no mark with that either. I'd say this was a "rug burn" but it couldn't be really.
This is an interesting quote from one of those Lyme articles i just posted from Mercola. Have any of you found this to be true?Can't help with that. I don't have THAT issue anymore.
I thought I was getting a head cold .... I had the aches and the runny nose. Adam felt like he had a hangover.It sounds like your symptoms are almost like mine. I still have a cough .... so maybe it is a cold ... but maybe I'm just "detoxing" from the stirred up toxins ... who knows. I was a wiped out, too. I spent most of the day lying around in bed.
We had also just returned from Florida, so some of the wiped out feeling could have just been Lyme fatigue. I'm kind of wiped out today from the weekend. Not lying in bed wiped out, just tired.
The achiness sounds just like how I feel from the Lyme .... I try to do a back/chest workout day when my back hurts like that ... I figure the bugs are causing the ache, so I may as well really get them mad!
Yeah, it does sound like the same symptoms. I'd already done my weight workout, so didn't think of frying the little buggers with more, lol.
Could you do another one now? Do you have any vacation left?I can't believe she's going again already!
Well, no. Technically yes, lol, but no. I do have money saved to cover it, but that money is going towards the carpet. My friend would let me pay her a little at a time, but I HATE, absolutely HATE owing money to friends. I can keep a credit card company waiting for YEARS, but not a friend, lol. I do have vacation left surprisingly. I accrue almost 2.5 days a month of time off, so as long as I don't take too much time off it adds up quickly. She's going in March, so I'd have enough time to go by then and still have 8 days left.
Yeah...and dont forget binders and lots of water to flush it out!Will do captain!
I'm taking extra chlorella and my pectasol, plus drank a lot of extra water yesterday.
I got that stiff neck when I started adding fresh garlic and pineapple to my juicing regimen. who knows!! Wonder why it seems the toxins seem to go there for most of us?Weird huh. My neck and shoulders are always stiff and sore. What I felt yesterday was a little different though.
What are they going to do to help with this?They desensitized me to it, but other than supporting all my body functions with supplements, nothing else.
Now, for the amusement of all, here is a poem about pink e-coffee:OMGOSH!!!
:lol:
When are you going to do the neuro/adrenal test? It is a urine test? I had no idea they do those for adrenals. I know mine are likely messed up. My doctor wrote that down as a possible issue upon our first meeting a year-and-a-half ago.Did it Sunday. It was urine and saliva. This was sort of a retest even though it was a different test.
Rachel-sorry to abandon you but I ordered the humaworm!!!!!
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How did the saliva test go? You'd think it'd be easy spitting into a tube, but that much saliva on demand takes effort. Smelling dried apricots worked for me, although most folks get good results with sniffing lemons or pickles. Which lab are you using for the salva testing? I've found that DiagnosTech's labs are the most comprehensive and cost-effective. Had mine done by Aeron labs and wasn't exactly thrilled with their ranges (too wide) and that they don't test DHEA along with the cortisol.Would you mind explaining more about the neuro/adrenal test you're doing?
Oh, you're not kidding. It takes me 30 minutes to an hour to fill ONE of those stupid vials with saliva. I had FOUR, lol. I never thought about smelling something...on the adrenal test I did last year they allowed sugar free chewing gum which helped, but this lab doesn't allow that. They give you this parafin film thing to chew, which does absolutely NOTHING to help produce saliva, lol.
This was sort of a retest. I had my adrenals tested last year, and I think it may have been DiagnosTech's at that time. As expected my adrenals were totally wiped out, lol. They gave me some supplements to support that and some changes in my daily routine, and the adrenals seemed to come back a bit. But the one thing that's never changed is sleep. I can't sleep.
So about a month and a half ago they did a neurotransmitter test. Because my problem is waking up several times a night, they had me do the test in the middle of the night, lol. I had to pee into a cup and spit into a vial in the middle of the night. Many of my neurotransmitters were out of range. I'm taking some of their (NeuroSciences) specifically targetted supplements and they seem to be helping. My doctor wanted to retest me in 4-6 weeks, so here I am.
Since this is a neuro/adrenal test...they're still measuring the neurotransmitters, but the emphasis is more on adrenal function so they're testing me during the day like I did in the original adrenal testing.
The lab is NeuroSciences/Pharmalab (I think...I have all my paperwork at home, so I'll have to double check later). My doctor seemed to like this lab better than the lab we used last time, especially for the neurotransmitters.
I'll check my paperwork when I get home and post about specifically what they tested for. I know norepinephrin, epinephrin, etc., but off hand can't remember exactly what all.
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Okay, so my first day of Humaworm is now done, lol.
I felt really pretty good all day...just the one "have to hustle" trip to the bathroom after the first dose, and the whatever it was that was in the stool. I also noticed my nose was runny today.
So now after the second dose, I've noticed that my shoulders and neck are achy...I almost thought it was from the weight workout I did, but I used light weights because of my PT/Chiropractic restrictions, and I've done this workout several times recently so it isn't that I'm using muscles I'm not used to using, so now I'm thinking it's from the humaworm. So, I know that this together with the runny nose thing sounds like I'm getting sick, but I don't feel sick at all and I"m not wiped out like I should be if I were getting sick.
Carla, I can't remember what your humaworm symptoms were...I'll look tomorrow when I get to work, but I know you and Adam both felt bad on the first day, did that include achiness?
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Already...another cruise?? And without YOU??
I cant believe it either...the nerve!!
I know!!! Just tragic!
There is a SMALL possibility that I could still get to go though. My friend HATES to fly, but her mom HATES it 10 times more. Last year my friend booked a cruise with her mom and her mom backed out. I was too sick to go then, so she had to cancel, but I'm not sick THIS year, lol. I do think that my friend almost has her convinced...it's only an hour flight, so I'm hoping she'll do. Her mom needs a vacation.
Well today (after 3 days of pineapple, etc.), I woke up to my left palm, actually almost the whole hand, hot, red and very very itchy. This is the worst I have ever seen it. I can hardly tolerate wearing my wedding ring even.So I am now wondering, what triggered this??? If anything I am having candida die-off not growth.
Could this be related to mercury, parasites, the pineapple?
I tried google but there just isn
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Here are some links which at some point explain the difference between a wheat allergy and celiac or gluten intolerance. They are not the same:
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
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Hello ! Just found out i have allergies to milk, eggs, soy and cain sugar. Not to wheat though ! My allergist said there's no need to do celiacs testing if i have no allergy to wheat. Does that sound right ? I am back to eliminating wheat as well as the other foods, just in case and plan to bring it back if i feel better in a couple of weeks. My dr.says i have leaky gut syndrome. Anyone know what kind of diet works well for them ?? Thanks and hi Raven !
No it is not right. An allergy to wheat is different than Celiac. A person can have both, but NOT being allergic to wheat does NOT mean you don't have Celiac!
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Sorry about the arm Kassandra! Hope the swelling goes down!
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Guess, the humaworm is really good for cleaning one out.
:lol: Just needed to make a dash for the restroom.
Ugg, my friend is going on a cruise WITHOUT me! The nerve of it! She had the audacity to ask her MOM to go. I mean really.
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Judging by how ill I got the first day on it, and how bad Adam felt the first day, I'd say it could work right away. But to "see" something? I don't know .... maybe things move through you fast!
Well, I wouldn't be surprised if things move quickly, lol. I have D so much that it seems like nothing stays in long (and oddly can't figure out why I'm getting so fat if that's the case, lol).
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Can the humaworm work in ONE DOSE, lol??? I just saw some kind of tissuey looking thing. I've seen this once or twice before, just not in a while. I've only taken TWO CAPSULES, lol. Seems impossible, so I'm leaning towards coincidence, but sure was weird, lol.
Yeah Carla...^ probably works much better.
This is a fascinating thread. Learning lots! Thank you all so much for sharing your personal experiences and information. Since I'm kind of on hold right now, don't really have a whole lot to contribute. Will probably ghost here for awhile until something gets moving on my end.Join in whenever you feel like it. Many of us are only just beginning to find out all the pieces and to actually treat them, so don't feel like you need to wait to join in though.
I have been reading and am almost caught up, but here is my news...Good for you for putting your foot down and good for you for telling them how inappropriate it was for them to NOT call about the bleeding, that amazes me! I'm glad you got rid of the monitor, lol!
Can you take any kind of pectin. I'm taking pectasol (rather expensive and hard to get though), but it's good fiber. They have different kinds of pectin. I see apple the most I think.
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Ha, my attempt at an up arrow didn't work very well.
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Aw Jin, sorry you had a crummy Thanksgiving.
Okay, started my Humaworm today, lol. Also started taking a bit of extra chlorella. I normally take nine 200mg tablets a day, so I'm going to try to take an extra 200mg pill when I take the humaworm pills. I'm waiting a few days before starting the charcoal because I want to know if anyone thing bothers me.
Andrea...there has been a tragedy. My cell phone broke!!!So...I'm totally without until Tuesday.
Holy moly...what will you do?
E. Coli!! I found out today....yikes!!! I thought that was interesting.Egads! No wonder you don't feel well.
<------ new kitchen. I was cooking Thanksgiving dinner.Edit, LOL, how do I do an arrow pointing up?
Kitchen looks great!!!
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One day I'm gonna get this right so that I can truelly determine the extent of oxalate problems.....eventually it will happen!I don't know, sounds like you're getting it right a lot of the time to me...at least you're learning from your escapades.
Then what, to get rid of the mercury? Also, is there any at-home way to tell if you have a high mercury burden?Then it gets excreted hopefully. I'm taking two kinds of binders...chlorella and something called pectasol which is a pectin. The pectasol binds with the stuff in the intestines, so hopefully anything that ends up there will get excreted. I don't know off hand of any at home way to tell about the mercury.
Well, I am off to hopefully get a good night's sleep. Tomorrow morning I have my appt. to have blood drawn for my Western Blot. Actually I have a question...will my being on abx affect the test at all? If anything wouldn't it help make the test positive?I thought I read somewhere that, yes, the abx can help a test be positive, but I also think I've read that one should be off them for a period of time...couple of weeks or more before testing. I can't remember why though.
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Sherry, have a great trip!
Carla, yay on the reduced metals levels!
Oh yes Rachel, we remember the sweet potato haze, lol.
Sure sounds like it was the oxalates!
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Well, I've decided to do the neuro/adrenal test. I think the urine part of the test is the same as the other test anyway. So, I get to spit into a vial every so many hours today, lol. I'm going to start the Humaworm tomorrow, although am a bit scared to do it on a work day.
Donna, it's good to see you back.Donna, great to see you around.Thanks!
Hello everyone! I have been reading along for a few weeks. Rachel24 turned me on to this thread from Yeastconnection forum.Welcome!! I used to post over at yeast connection, but haven't in a long time.
I've been reading a little about humaworm over on the Curezone website. Still haven't figured out how you know if you need to do this or not. Any pointers? Had worms a lot as a kid, but then we lived in the tropics and it was just a part of life. Everyone in the family took the meds the drs gave us (even if only one family member had worms) and we were good for another 2-3 months. Think its possible to still have some of those nasty little buggers in my system 30 years later?Has anyone looked into Andy Cutler's chelation protocol? If so, what do you think about it? I've been doing some reading on his yahoo group and, if nothing else, its interesting.
I decided to try the Humaworm because of my constant D. No matter what I've tried, it just never goes away for long and I've seen things that look like rice. I eat or have eaten a lot of the "suspect" foods like rare steak, raw fish, etc. I've traveled to suspect countries and so I just figured with all the dysbiosis I have in my gut, it's probably a given. The Humaworm actually works on some of the stuff I have anyway, including candida.
I looked in the Cutler protocol a little over a year ago when I first suspected metals. I had 11 fillings and six of those had gold crowns over them. I don't remember much about the protocol though. Right after I looked into that, I had my amalgams out and then found out abot the lyme, so have put it all on hold for a while.
Everyone who has Lyme...read this...it's REALLY FUNNY!!! You may have already read it, but I just came across it!Loved the list!
I hope everyone is having a great weekend! We're decorating our Christmas tree ... seems early, but Morgan wanted to do it before she went back to school.I did too. I can't wait to tell my LLMD! Last year I didn't even feel like putting stuff up, much less actually drag it down and put it up.
We are going to decorate our tree, but we do it in all white and blue (for Hannukah).Sounds nice. When I was young we always had blue...blue ornaments and blue spotlights on a silver tree (not Jewish, just grew up in the 60s).
Sorry you're not feeling well again! The bath might have really stirred things up.
Omg...i Might Be On To Something
in Food Intolerance & Leaky Gut
Posted
Aw Ami, you'll be in my prayers today! My mom had to have two or three D&Cs...other than needing a little rest afterwards, she came out okay for all of them.
Kassandra, hope all goes according to plan!!!
Sorry, no experience with the "early" puberty. I started my periods at 11, but that was MANY years ago, lol.
Yeah, Jin, how'd it go, lol.
Ooooh, sounds like fun!
You know, mine is FINALLY getting a little better. I still have some nights, like Tuesday night, were I just can't sleep, but overall, it's getting better. It seemed to get better after the neurotransmitters were tested, and they supplemented me for the specific imbalances. I'm fairly certain the imbalances are caused by the lyme or metals, but at least the supplements help get them a bit more balanced.
I am SOOOO much more in the Christmas spirit than I was last year. I think it's because I'm not sick and I'm actually feeling pretty good these days. Still, I'm not eating peas and beef in the middle of the night.
Congratulations on getting your phone...the world is right again!
It's hard enough to worry about our own health, but sheesh, it must be horrible to watch your child go through this stuff!
So what is it about the soaking...is it the heat or is it the combo of heat and moisture. I've seen some heated hand wraps...the fingers are open, so you can still do stuff, but the wrist and palm areas are heated. I wonder if that would work?
Yeah, and that website makes me wonder to...I'm on day 4 of the Humaworm, and other than what I saw on the first day, I haven't seen much of anything else...I'm wondering if I should have done the colon cleanse instead, lol. Although I had a colonoscopy last year and doc said my colon looked squeaky clean.
What a great experience! I wish I had taken advantage of some of the things like this when I was in school, lol.
Good luck with the ultrasound! I had to have two kinds and the second one wasn't much fun (internal), lol.