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Rachel--24

Omg...i Might Be On To Something

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I don't think she can't walk because of Lyme, I think it's from the meningitis (well, actually I don't really know...) which I believe may be a complication of Lyme. Escpecially since she has tested positive for Lyme before.

It seems that many people with Lyme can't walk .... at least there are several on LN. Toward the beginning of treatment I could not walk without help much of the time. That is why Adam would stay home from work .... to help me eat, etc. .... we were worried I'd fall on the stairs. At home everything is so close together it's not a problem, but when I was out I needed a person to hold onto. If I didn't have so many kids I would have needed a cane.

There are people on LN in wheelchairs, or who used to be in wheelchairs.

So, it could be meningitis, it could be Lyme, or it could be meningitis caused by Lyme ... only an LLMD would be able to figure it out. I'm thinking it has to be at least related to Lyme since she's tested positive for it and has never been treated. She probably tests negative now because she's become sicker .... that's what happens ... it becomes harder to find in the blood.

Carla, Thanks for that! I read it too...I will maybe send it to her. How is your cold doing?
It's still pretty bad, but after the coffee enema yesterday I felt significantly better!!! It helped tremendously with the more Lymie symptoms. Now it's just a sore throat and a cough .... and a runny nose ... just like the rest of the family who has it. :)

I just had to share that i slept all night last night, well from 11 to 5, til my husbnad went to work and then called me to open the door becuase he forgot his wallet, but it felt great to sleep that long. How did everyone else sleep.

paula

YAY! I slept four hours with my first half-Ambien, and four hours with my second. :)

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he is making tacos, well taco crunch, i like mine with chips broken up and then all the good stuff on top lol

Yuuummmm!!!! I had my favorite dinner...steak and sauteed green beans.

Thanks! Spending tonight making copies of labwork, finishing up paperwork, and getting everything together. Hopefully, I won't be so overwhelmed tomorrow, I'll actually be able to absorb some of what he's saying.

I'm so excited to hear about the appointment. What time is it and are you on the east or west coast or somewhere in between?! :lol:

My question is, how do I approach her about this? I think she is pretty open, but she is in her 50's and I think at this point, she is really "done" exploring what could be causing her illnesses.

All hope is NOT lost, lol. I'm 52 and am definitely not done...there were points where I was close to being done, but all it took to snap me out of it was a doctor or two who would listen and really try to help me.

I just had to share that i slept all night last night, well from 11 to 5, til my husbnad went to work and then called me to open the door becuase he forgot his wallet, but it felt great to sleep that long. How did everyone else sleep.

I slept better too! For about three nights now. I still wake up a bunch, but I'm falling back asleep. I slept for 4 hours solid, then got up for the bathroom, took my charcoal and went back to bed. Slept again until after 2:30. Then woke up every 40 minutes or so until I finally got up at 4:25, but it actually FEELS like I slept, lol.

YAY! I slept four hours with my first half-Ambien, and four hours with my second. :)

Yay...my dream, lol! :lol:

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Thank you all for your support. Sometimes I just wish I could take a vacation from this body.

The endoscopy went fine yesterday. Everything looked "normal" and I will have the biopsy results in 1-2 weeks.

The drugs completely knocked me out, I slept all day and night and now am dealing with the shakes, headache and lovely D.

I hate narcotics, HATE.

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Nyxie,

I hope your appointment goes well! :D

Rachel,

Your Christmas dinner sounds fantastic!!

Everyone,

Well, I'm back to discouraged here. Two days before Christmas was actually a viral/stomach bug (lots of D :ph34r:), which turned into a ut/bladder infection, then a cold, and now a mild kidney infection. Also, I'm going to now have to eliminate corn. :(

And at this point it feels like we're doing a whole lot of nothing. :( The humaworm we ordered got lost, and we just reordered it. :rolleyes: They're not behind in any of their compounding, so we should have that done soon. Had to go off everything for metal detoxing, except for a salt bath (which doesn't really help, imo) and I think that's part of why I'm having problems with my kidneys. Brilliant Naturopath not suggesting to take any binders with detox, and brilliant mother for not getting any at my insistence. :angry:

Now we have an EAV appointment (maybe) set up with our old allergist on January 2, with actually seeing the Dr there on the 28, and then seeing the LLMD Feb 14. I really feel like we're just spinning our wheels here. Compared to a month ago I'm at the exact same place, except now I have to get rid of all corn. :( And Mom seems fine with the pace we're going at.... :( :(

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I'm so excited to hear about the appointment. What time is it and are you on the east or west coast or somewhere in between?! :lol:

I believe she's on the east coast time, but not 100% sure on that.

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Compared to a month ago I'm at the exact same place, except now I have to get rid of all corn. :( And Mom seems fine with the pace we're going at.... :( :(

Sorry about the corn Birdy. I'm hoping your mother will come around more after your appointment like Kassandra's did. I can just imagine how difficult things are for you. :(

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Ok...so I'm pretty much totally eating normal food now. :blink:

Yeah...I know I said It was a one-time thing but I guess it turned into a daily thing. :rolleyes:

I was already eating pumpkin before Xmas...now its pretty much everything...I'm still eating leftovers from Xmas dinner....yes...LEFTOVERS. :blink:

I think the biggest reason is that one side-effect of the antihistimine (Ketotifen) is increased appetite (also wieght gain :D ). I've taken racheling to the extreme! :ph34r:

I'm still eating the beef and peas...this should be enough because its not a small amount. But NO...in addition I'm eating platefuls of Xmas leftovers + pumpkin pie + a yummy apple crumbcake I bought. Oh yeah...also lots of spoonfuls of whipped topping! :o

I found an all natural whipped topping...like cool whip w/out all the chemicals. I'm in HEAVEN. :)

I havent really gained any weight though....I just get bloated and then its gone and I'm still the same size. :(

I've been kind of sulking because I'm not gaining weight but everyones telling me that the tapeworm is getting it all...and its gonna get bigger if I keep feeding it so much. :P

Even with the parasites...its still hard for me to imagine where all my food goes...its like it just disappears. :unsure: I would understand if I had D...but I dont.

I figured that I'd stop eating all this stuff once the symptoms hit me...cause that usually sets me straight right away! I usually get very symptomatic almost immediately or maybe a day later....but so far that hasnt happened. :huh:

I've had some minor stuff but nothing really bad...no brainfog yet. Brainfog always scares me enough that I dont cheat.

Sooo...I dont know if my tolerance has increased because of the chelation?? Maybe I'm not quite so severely toxic anymore??

The other thing is that usually after one infraction...especially involving baked goods or high carbs...I will wake up with numbness in my hands. I actually expect it.

Today was the first day I woke up with very slight numbness...and this is after several gluten filled meals as well as baked goodies. I've been eating banana bread, cornbread, pumpkin pie and the apple crumbcake. None of its gluten-free except the banana bread...which I was eating before Xmas.

I'm definately going to stop now that I've pretty much eaten all the leftovers. :ph34r:

I want my treatments to go as smoothly as possible so its back to the beef and peas but its really hard taking the Ketotifen and having an even BIGGER appetite! :blink:

I literally dont stop eating for hours!

The other common side effect is drowsiness that usually goes away after the first few days. I had that one...it was pretty much knocking me out. I was taking it only before dinner because thats what both Dr. Amy and Dr. Carrie reccommended....until the drowsiness isnt a problem anymore.

One day I took it before my lunch and then I was too tired at work...dragging around....just wanting to sleep.

That side effect has worn off now and I'm taking it before all meals and even doubled the dose without feeling tired. :)

I came to the conclusion that the numbness in my hands is most likely from hypercoagulation. The more toxins circulating in my blood the less freely my blood is flowing...hence poor circulation. Thats what makes the most sense to me.

As long as the food I'm eating is feeding beasties there will be an increase of toxins from all the waste they produce. Not to mention that most of what I've eaten is not organic.

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I really feel like we're just spinning our wheels here. Compared to a month ago I'm at the exact same place, except now I have to get rid of all corn. :( And Mom seems fine with the pace we're going at.... :( :(

Awww Birdy...Its sooo frusterating having to wait and when things arent moving along the way we want. There were plenty of times I felt the same way...this thread got me through it. I know Kassandra went through alot of rough times waiting to get to the point where things were actually moving in the right direction. You'll get there too....hang in there! :)

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The drugs completely knocked me out, I slept all day and night and now am dealing with the shakes, headache and lovely D.

I hate narcotics, HATE.

Yeah, the same thing happens to me. I get nauseated too.

Birdy,

I'm so sorry! Hoping things will turn around soon!

Ok...so I'm pretty much totally eating normal food now. :blink:

Amazing!! Really amazing!

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Just a quick background on this friend/coworker:

She's 40-45

7 months ago she had melanoma pop up on her leg/knee area.

She had it surgically removed

The melanoma had spread to her lymph and traveled up her leg into her lymph nodes in the upper thigh. -had those removed as well

Had a pet scan that showed no other cancer cells

Dr's wanted her to take this trial drug, Interferon, which is supposed to bring out your immune system in full attack and possibly (2 - 5% chance) kill any remaining undetected cancer cells. The drug is very toxic.

She lasted 6 out of the 12 months. Some of the symptoms that she incurred:

floaters in the eyes

headaches

teeth and gums sore and receeding

thryoid issues

hair loss (which made her quit just recently- large amount of hair loss)

naseau

Tired

Among many other side effects

Here is my theory: The Interferon pulled Mercury out of her cells and teeth (mouth full of amalgams) causing the floaters, thyroid issues, and hair loss. I think it has mostly affected her head area.

Now that she has quit the Interferon, I am trying to figure out a way to prevent further hair loss and I was thinking of getting her to take Chlorella and activated charcoal to help absorb some of the mercury. She is now taking Synthroid in the morning and I want to be sure she does not absorb that medicine. So, I was thinking night time since the body detoxes a lot during sleep.

What do you guys thinK?

Also, I have convinced her to follow up with treatment by an ND to prevent cancer in a more natural way. She has a nodule on her adrenal and like I said - mouth full of fillings - old ones. She smokes too, and is trying to quit, so lots of cadmium and all that other crap in the cigs.

Prior to interferon -

Fatty Liver

Nodule on Adrenal Glands

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April,

I saw your post about feeling like your head was big. I've had that problem since taking rounds of antibiotics and also having radioactive iodine treatment for Graves. I was already really sick and not able to work and the more insults to my body...the worse things got. I didnt know what was going on at the time.

I had ALOT of insults in a short period of time....it was all right after my amalgams got removed unsafely and I became symptomatic.

I'm pretty sure the head pressure and swelling is a direct result of whats going on in my gut. Its from my body being in a constant reactive state. My head actually does get bigger...there is some swelling but its not obvious to anyone unless I show pictures...then you can sort of see the difference.

It will worsen with exposure to chemicals, foods high in carbs, foods which contain chemicals, etc. It never completely resolves (no matter how clean my diet is) and I think its because the infections themselves cause my body to react. Even with candida totally under control I will still get reactions from no obvious source...so I'm thinking its coming from the tapeworm and other parasites. Most likely my immune system is just in a chronic state of "alarm" with a constant release of histamine.

I think the swelling/inflammation is caused by my immune systems response to things passing through leaky gut as well as the infections and their waste.

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Ok...so I'm pretty much totally eating normal food now. :blink:

Wow!!! :o

Whens your next chelation?

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Today is the first day I've had where I can actually RELAX. :)

I do have chelation but not until later today.

Going back to meeting Donna....cuz I didnt have alot of time for posting but I was reading all along....trying to go by memory now. :P

Yeah..I AM shy when I first meet people but I felt pretty comfortable talking to Donna! :)

I dont know how I might have been if she pressed her face against my window though! :lol:

I might have been scared. :ph34r:

But later I would have thought it was hysterical. :lol:

I might have been more nervous or shy if I'd *knew* we were going to meet...but I didnt really have time to think about it. :P

I knew Donna had an appt. so when I walked in I wondered for a split second if the woman sitting on the couch was Donna....but I wasnt sure. I think I may have smiled at her but I didnt say anything.

The earliest I ever get to my appt's is a few minutes...so I wasnt sure if she would be that early for her appt. I figured it probably wasnt her.

Donna, yeah....the girl at the desk (Nicole) usually does greet me by name when I'm there for my treatments or an appt. with Dr. S.....but never when I'm showing up unannounced with boxed up urine in my hands. :rolleyes:

I think they know whos on the schedule and will greet by name when you have an appt. Its professional and makes for a friendly environment...but I doubt they really know everyones name.

I actually met Scott the first time because when he walked in Nicole said "Hi Scott"....I recognized him from the pic on his website. He was really friendly and he hugged me when I introduced myself.

I dont mind hugs at all! :)

Donna and I exchanged #'s and I figure when I get farther along and can actually go out to eat...maybe we can go have lunch. :)

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Today is the first day I've had where I can actually RELAX. :)

It's about time. Sounds like you need some time after last week! :)

That's so neat about you and Donna meeting up. I'd like to meet you guys and many others on here......

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April,

I saw your post about feeling like your head was big. I've had that problem since taking rounds of antibiotics and also having radioactive iodine treatment for Graves. I was already really sick and not able to work and the more insults to my body...the worse things got. I didnt know what was going on at the time.

I had ALOT of insults in a short period of time....it was all right after my amalgams got removed unsafely and I became symptomatic.

I'm pretty sure the head pressure and swelling is a direct result of whats going on in my gut. Its from my body being in a constant reactive state. My head actually does get bigger...there is some swelling but its not obvious to anyone unless I show pictures...then you can sort of see the difference.

It will worsen with exposure to chemicals, foods high in carbs, foods which contain chemicals, etc. It never completely resolves (no matter how clean my diet is) and I think its because the infections themselves cause my body to react. Even with candida totally under control I will still get reactions from no obvious source...so I'm thinking its coming from the tapeworm and other parasites. Most likely my immune system is just in a chronic state of "alarm" with a constant release of histamine.

I think the swelling/inflammation is caused by my immune systems response to things passing through leaky gut as well as the infections and their waste.

Thanks Rachel. I started having this about 2 weeks after I started Humaworm. So, I finally quit. After e-coffee and 2 detox baths, it finally went away. I am sure the toxins will build back up and it will happen again.

I also have this constant ringing in my ears - which bug the crap out of me!!!

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Hi Gang! Thanks for the well wishes on the appt today. :)

Well.....

I'm still mulling the whole thing over. Feel kinda like I got hit by a south-bound bus. Would have preferred several bicycles and a wheelbarrow, but whatcha gonna do? Of course, today I have a fever and aches and my glands are swollen. Probably coming down with something.

Anyway, had the appt with the LLMD. His bedside manner lacks a little something. He also works within the parameters of what the insurance companies will pay for, which doesn't thrill me. I actually broke into tears during the appt because I'm so frustrated. He just sat there. Didn't even offer a paper towel, let alone a tissue.

I handed him the wad of paperwork that reflects the past year of my life. He flipped through the test results. He said he doubts that I have iron, b12 or folate deficincies because they don't reflect on my CBC. That kinda got my dander up. He ran testing for these just to make sure.

He also rubbed me the wrong way when he said something about getting older and these things happen. Can't remember the exact phrase he used but it was something like shooting oneself when getting past the age of 30 or somesuch BS.

On the bright side (there's gotta be a bright side), he tested my cognitive skills. Ummm... yeah. I kinda knew I had problems in that area but, until the testing, had no idea they were really THAT bad. I had trouble doing most of the basic things he asked me to do. At least I know it's not just my perceptions.

He also ran tests for Lyme and co-infections. I didn't get the name of the lab they use. Apparently they do DNA testing to check for the critters. Should get the results back in about 2-1/2 weeks. Have an appt on Jan 18th to get my test results.

There was probably more, but I'm pretty fried right now.

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Paula,

Sorry to make your head swim with all this info! :wacko:

Most of us here have found that its a bunch of different things...which are not seperate issues but all interrelated....sort of a cascade of events which lead to chronic symptoms.

Since your #'s are still elevated you are obviously not healing like you should. If its not gluten you might want to consider investigating parasites along with the candida.

Two years ago I was seeing a Dr. who specialized in gluten intolerance and leaky gut. He talked alot about parasites....saying that he finds them in *every* person who does not heal on the gluten-free diet. If not parasites then some other infection...such as bacteria overgrowth. When there is damage to the intestinal lining parasites can make themselves at home in the "pockets" which are caused by damage.

He said they often go undetected in testing until the person is gluten-free and the gut begins to heal itself...forcing them out of their "homes". However, the parasites still remain in the gut and continue to cause problems which would prevent someone from healing as they should.

Unfortunately, parsites are extremely difficult to detect in testing since there are so many different species and they may not always be seen in stool. No parasites ever showed up for me but he did find and treat a bacteria overgrowth (c.diff).

Now with alternative testing parasites show up as a major factor for my ongoing gut issues.

I had posted alot about my discussions with that Dr. and I recall posting links to a radioshow which discussed this stuff in great detail. I'm not sure if that info. is in the early days of this thread or in another thread....if you are interested I can try to dig it up.

There was also alot of info. about the test Kassandra did for Candida... "D Arabinitol". This was discussed in the radio show as well..if I'm remembering correctly.

I never had the D Arabinitol test. The best test I had for candida was a blood test which looked for antibodies against yeast, bacteria and dietary proteins...all causes for leaky gut. It was an intestinal barrier function test. My antibodies were all elevated....yeast was the worst by far...it was extremely elevated.

Interestingly, one of my older topics was recently brought back up as the Dr. who was on the radioshow and who runs "BioHealth" (lab that does the D Arabinitol test) found it in a search and posted in it.

The radioshow was pretty interesting...I'll try to find it and post a link for anyone wanting to listen.

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He also ran tests for Lyme and co-infections. I didn't get the name of the lab they use. Apparently they do DNA testing to check for the critters. Should get the results back in about 2-1/2 weeks. Have an appt on Jan 18th to get my test results.

Unfortunately the DNA testing is not very sensitive...meaning that the DNA actually has to be IN the sample to get a positive result. Usually Lyme is "hiding"....its an intracellular bacteria so its not usually easily picked up in blood or urine. BUT....if it DOES show up...there is no question as to whether or not Lyme is an issue. If the DNA is present...then there is no doubt. This makes the test 100% specific....its just not very sensitive.

Igenex runs this test but usually Dr.'s only order it if they are unable to get positive Western Blots (even after trying an abx challenge)....and they still suspect Lyme.

Just wanted to let you know a neg. DNA test means nothing.

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Boy Nyxie.....doesn't sound like a great doctor. :(

Is there anyone else within a 3 or so hour drive from you that you could see?

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What do you guys thinK?

Also, I have convinced her to follow up with treatment by an ND to prevent cancer in a more natural way. She has a nodule on her adrenal and like I said - mouth full of fillings - old ones. She smokes too, and is trying to quit, so lots of cadmium and all that other crap in the cigs.

I'm so sorry about your friend! I really don't know what to say about it! The fillings and smoking are definitely not good. Even if they aren't causing direct problems they are probably affecting her body's ability to bounce back.

Yeah..I AM shy when I first meet people but I felt pretty comfortable talking to Donna! :)

I dont know how I might have been if she pressed her face against my window though! :lol

...

I think they know whos on the schedule and will greet by name when you have an appt. Its professional and makes for a friendly environment...but I doubt they really know everyones name.

...

Donna and I exchanged #'s and I figure when I get farther along and can actually go out to eat...maybe we can go have lunch. :)

I think I was actually the shyer one, but look out next time. :lol:

Um, I think they must know YOUR name though, lol. They definitely don't know mine, but I heard the nurses saying something about they thought you were there for whateveritwasIcan'tnowremember. :P:lol:

Definitely lunch!!!

That's so neat about you and Donna meeting up. I'd like to meet you guys and many others on here......

I have no doubt that it will happen one day!

Thanks Rachel. I started having this about 2 weeks after I started Humaworm. So, I finally quit. After e-coffee and 2 detox baths, it finally went away. I am sure the toxins will build back up and it will happen again.

I also have this constant ringing in my ears - which bug the crap out of me!!!

I get ringing a lot in my ears. It's not constant for me though...that WOULD drive me crazy.

I think the Humaworm was causing me some problems too, although it was subtle enough that I didn't have to stop, but now that I'm off of it, I feel SOOO much better, lol. I'm sleeping better already, and definitely have a bit more energy.

He also works within the parameters of what the insurance companies will pay for, which doesn't thrill me.

This really worries me...this is the main reason most LLMDs don't contract or work with insurance companies, so they aren't confined by what the insurance companies say.

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Paula,

Sorry to make your head swim with all this info! :wacko:

Most of us here have found that its a bunch of different things...which are not seperate issues but all interrelated....sort of a cascade of events which lead to chronic symptoms.

Since your #'s are still elevated you are obviously not healing like you should. If its not gluten you might want to consider investigating parasites along with the candida.

Two years ago I was seeing a Dr. who specialized in gluten intolerance and leaky gut. He talked alot about parasites....saying that he finds them in *every* person who does not heal on the gluten-free diet. If not parasites then some other infection...such as bacteria overgrowth. When there is damage to the intestinal lining parasites can make themselves at home in the "pockets" which are caused by damage.

He said they often go undetected in testing until the person is gluten-free and the gut begins to heal itself...forcing them out of their "homes". However, the parasites still remain in the gut and continue to cause problems which would prevent someone from healing as they should.

Unfortunately, parsites are extremely difficult to detect in testing since there are so many different species and they may not always be seen in stool. No parasites ever showed up for me but he did find and treat a bacteria overgrowth (c.diff).

Now with alternative testing parasites show up as a major factor for my ongoing gut issues.

I had posted alot about my discussions with that Dr. and I recall posting links to a radioshow which discussed this stuff in great detail. I'm not sure if that info. is in the early days of this thread or in another thread....if you are interested I can try to dig it up.

There was also alot of info. about the test Kassandra did for Candida... "D Arabinitol". This was discussed in the radio show as well..if I'm remembering correctly.

I never had the D Arabinitol test. The best test I had for candida was a blood test which looked for antibodies against yeast, bacteria and dietary proteins...all causes for leaky gut. It was an intestinal barrier function test. My antibodies were all elevated....yeast was the worst by far...it was extremely elevated.

Interestingly, one of my older topics was recently brought back up as the Dr. who was on the radioshow and who runs "BioHealth" (lab that does the D Arabinitol test) found it in a search and posted in it.

The radioshow was pretty interesting...I'll try to find it and post a link for anyone wanting to listen.

rachel,

I woild love to hear those radio shows. Its ok u made my head spin, but i think it did me some good to hear it outloud what could be doing damage to me still. I think that is why i actually got some good sleep and today i have cleaned the whole house, i havent dont that in months, well not in one day. I try to at least clean the downstairs, but today i cleand the upstairs also. Of course im tired now but its a good tired.

The natualistic dr is going to come up here and see me next week, i talked to her on the phone for a bit today and said how hard it is for me to travel and everything and she said she would come up here. I was so happy to hear that. She asked what i wanted to be tested for and i said candida for sure, she even brought up about parasites and i was like sure, test me for those to. She sounds wonderful. I cant wait to meet her.

She said all the stress that i have been under the last few months is what brought my body into overdrive that is why i am having so many problems now. She wants me to keep my stress low for awhile and see if that helps some. She promised me that we will look at all areas to get me healthy so im excited about that. She also said my insurance should cover some of the stuff, but my parents said whatever it doesnt cover then they will cover, so im not strssing over that and she will give me an good deal on whatever herbs or meds that i might need, since my moms best friend has been seeing her for years and is fond of her. It pays to have friends in high places lol.

paula

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I just had to share that i slept all night last night, well from 11 to 5, til my husbnad went to work and then called me to open the door becuase he forgot his wallet, but it felt great to sleep that long. How did everyone else sleep.

paula

That's great! I wish I could say the same! Ugh.

Everyone,

Well, I'm back to discouraged here.

Yes, don't lost hope! You will get better and you will get in to see the LLMD eventually! I promise! You probably remember the ups and downs I went through, but I finally did see Dr. H and I'm SO GLAD I did, so is my mom!

Paula,

I hope this naturopath can help you! :) I was also going to say that you have been under a lot of stress, and not that that's caused your symptoms, but it really doesn't help. I started getting sick when I moved to New Zealand...thanks to stress!

Carla,

Glad to hear you're doing a little better!

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