Omg...i Might Be On To Something

[happygirl]

x

[Rachel--24]

There are various ways...most involve drinking some sort of substance (usually a sugar, often lactulose (not lactose!) or mannitol, or d-xylose) and then they measure either blood or urine afterwards.

Laura, this is the test that I'm familiar with. Its the same one that Great Smokies runs. My mainstream Dr.'s had never even heard of Leaky Gut. You know....I got this face from them

So...I'm pretty surprised they ran the test for you.

I never tested for leaky gut because I felt like it was kind of pointless. I figured I probably have it but the test wont really tell me why I have it.....so I just never bothered with it.

Rachel,

I don't see where it violates any board rules. I'd be happy to sign it--I'll send you my email address

I think I told you that my husband's cousin's daughter has a terrible case of Lyme and was on IV antibiotics. Disrupted her life in a major way. My husband, himself, had it last summer.

What with so many affected, and the unreliable testing that's out there, it's a shame that they now want to limit the treatment options.

Thanks Patti.

You're awesome!

I'll send you the link later when I get off work.

[happygirl]

x

[CarlaB]

My test results STILL were not in the mail!! I went out to get it and there is a police man sitting in his car in front of my house .... he must read celiac.com and knew I'd been threatening the mailman! Actually, we live right downtown, so it's not that weird for him to be sitting there ... just strange because he's about 20 ft. from our front door. It's been three weeks today .... but IGeneX wouldn't have gotten the blood till at least Wed.

[AndreaB]

Bummer Carla.

I jumped right on here when I saw you had posted.

Will keep on waiting right along with you.

[CarlaB]

Bummer Carla.

I jumped right on here when I saw you had posted.

Will keep on waiting right along with you.

Thanks.

This morning I told Adam that this is hard to wake up to everyday. He turned it into a joke, which I WASN'T in the mood for ... so I gave him a list of what I didn't get done last week and told him HE could do it, that it just wasn't funny. I think he got the message ... he said he'd do that stuff tonight.

[Rachel--24]

leaky gut is actually the "common" name for "increased intestinal permeability"

Yeah...I actually used the "correct" terminology when speaking to my Dr.'s.....but still....they had no idea what I was talking about.

My HMO sucked though....I had Kaiser.

[dlp252]

Ya mon!!! Greetings from Montego Bay, Jamaica!!!! Had a fun day rafting on a river on a raft (two person + driver, lol) made of BAMBOO (can you say give me a life vest, lol), tour of a banana plantation in a covered tractor pulled jitney (ask me anything about bananas when I get back, lol), and eating some really good Jamaican barbeque and rice and nice dinner. So far so good with the food, although I do have to be careful. Dinner was a huge steak, a baked potato and some steamed veggie. Luiggi the head waiter has assured me I can speak to him any time and he will take care of my dietary needs. I'm slacking today...only ate 3 times (oh wait, 4).

[jerseyangel]

Well, there ya have it--Donna's fine! And eating quite well by the sound of things

I can't believe I was such a dork

[AndreaB]

Hey Donna!

Glad to hear from you again. You're spoiling us.

Also good to hear that you have been able to eat and haven't gotten sick.

Patti, Don't be so hard on yourself. We love you.

[DingoGirl]

Donna-Donna bo bonna banana fanna fo fonna......blah blah blah....DONNA! Nice to see you!

Carla......your husbnad is the goofiest one.....I see now that he does have only one pose for photos.....excellent! Yes, I called the cops so you wouldn't attack the mailman. but heinous that you are still waiting.

It's so quiet around here lately. The whole forum actually. We need to stir up some excitement. Maybe I"ll make up some big drama and post it, then see what happens. Just kidding. my life is so dull now, I don't think I could even MAKE UP anything. sheesh. maybe the drunken bacchanal I have scheduled for later in the week will revive me. (well not so drunken, it's in the day time for Pete's sake and I am driving myself.)

hi everybody......I got nothin'. just recovering from my cold, must be all better to put on Stepford personality for work tomorrow. that is, if I still have my job. I gave the brother my suggestions on how to attract customers, and it didn't have anything to do with painting the SIGNS he is continually having us paint. Um, kind of had to do with this thing we call customer service and being friendlier to customers. P-SHAW.

Where is Rinne? is she not feeling well?

Laura......hello to our VERY happy girl.

[DingoGirl]

p.s. OH MY GAWD!!! I am a terrible mommy!

I just realized it is Tika's 12th birthday today. whoo-hoo! We've already been in our romp through the orchard and that's, I'm afraid, all she's getting.

[jerseyangel]

And, may I say--what a cute picture of the birthday girl! I hope she's not "working" on her birthday--carrying the paper

[AndreaB]

Susan,

Good to see you and happy b-day to Stinker...Tika.

We would have appreciated it if you would have kept your cold to yourself.

Rhonda seemed kindof down recently. Will have to go check if she's been on and reading or not.

[AndreaB]

Ok,

Rhonda was last on Saturday afternoon/evening.

Does anyone know whether she had plans to go see her new granddaughter?

[DingoGirl]

And, may I say--what a cute picture of the birthday girl! I hope she's not "working" on her birthday--carrying the paper

Patti well, she "works" every day, in fact it's a big, exciting morning ritual here....breakfast first, then we "go get the paper," and this causes Annie to do HUGE stallion leaps in the air, spinning and running around and leaping with pure joy, and they GALLOP to the front door (all 25 feet from the kitchen) and Stinky gets the paper, then both get a bone (Annie never does any work but still benefits). It is so cute, I actually think I should videotape it......and BTW there can be no variation of the routine or there would be incessant and tortuous staring

Susan,

Good to see you and happy b-day to Stinker...Tika.

We would have appreciated it if you would have kept your cold to yourself.

Andrea.....did you guys get colds? aw.....so sorry. it is not fun.

And where's Julie? haven't seen much of her either......

[AndreaB]

Julie hasn't been on since Saturday morning.

Why are they not posting? (or at least reading)

[jerseyangel]

Patti well, she "works" every day, in fact it's a big, exciting morning ritual here....breakfast first, then we "go get the paper," and this causes Annie to do HUGE stallion leaps in the air, spinning and running around and leaping with pure joy, and they GALLOP to the front door (all 25 feet from the kitchen) and Stinky gets the paper, then both get a bone (Annie never does any work but still benefits). It is so cute, I actually think I should videotape it......and BTW there can be no variation of the routine or there would be incessant and tortuous staring

I love it!

[CarlaB]

OMGosh, Susan, are we REALLY supposed to remember pet's birthdays, too???!!! OMGosh, I don't even know how old my bird is, let alone when his birthday is .... with all these kids, he's lucky to get fed!!! Of course, he can talk if he wants something. Today he was saying "c'mere, step-up" I guess he wanted out.

I do have a goofy husband, but he did vacuum and mop our bedroom tonight!!! It's the finished attic of our house, so it's HUGE! Quite a job!

[jerseyangel]

Julie hasn't been on since Saturday morning.

Why are they not posting? (or at least reading)

I know Hope they're ok

[Rachel--24]

Well, there ya have it--Donna's fine! And eating quite well by the sound of things

I can't believe I was such a dork

Nooo Patti....You are NOT a dork!!

I wouldve reacted the same way if I thought one of you guys might be in trouble!

It shows that you care and were concerned for Donna. She will appreciate it.

DONNA!! I love reading your updates....OMG...the food sounds great!! I'm glad you've been eating without incident! Wonder what that must be like.

I gave the brother my suggestions on how to attract customers, and it didn't have anything to do with painting the SIGNS he is continually having us paint. Um, kind of had to do with this thing we call customer service and being friendlier to customers. P-SHAW.

Yeah...P-SHAW ...when will these guys learn??

And yeah...where the heck is Rinne?? I'm missing my Lymie buddy.

Hope she is ok.

I just realized it is Tika's 12th birthday today. whoo-hoo! We've already been in our romp through the orchard and that's, I'm afraid, all she's getting.

Happy Birthday to Tika!!!

I think she will be staring at you....wanting more than just the orchard romp!!

Carla....BUMMER....When the heck are these results ever gonna show up!!

and BTW there can be no variation of the routine or there would be incessant and tortuous staring

Staring dingos.....that has always cracked me up!!

Carla, I never knew the b-days of any of my pets either.

I do know their ages......thats the extent of it though.

[CarlaB]

I can figure out their ages, but it takes me a little while ... birds live for a LONG time. I think mine is about 6, which I think makes him a teenager, at least he acts like one.

[Rachel--24]

Ok...I'm done with my Dr. appt. It went pretty well.

My mom got the whole lesson about chemical sensitivities and what it does to my brain and how none of this is my fault.

Oh.....how funny is this....I actually met the Better Health Guy (Scott) in the waiting room! Thats the guy I've been emailing recently. I thought that was pretty cool....my first real meeting with someone I met online....and totally random that we're both in the same Dr. office at the same time.

Maybe one day I'll meet Donna the same way! Only I dont know if I'd recognize her unless she was laughing and looking as joyful as she does in her avatar. Thats the only way I "picture" Donna.

So...ALL of my test results were negative. All co-infections and all viruses. There is no EBV or anything else. We talked about the fact that there probably are co-infections...but at this time....they are not showing up in the tests.

This is the first time that the Dr. really taked to me about treatment and what he believes I have going on. Its the first time he was actually saying I have Lyme Disease. I felt VERY relieved that he did not dismiss Lyme because of the co-infections coming back negative. HUGE relief...I had been really concerned about this.

So since he was talking about Lyme and Lyme treatment I asked if he was convinced I have Lyme?? He said in his mind everything is pointing to Lyme. He brought up the BioSET results clearly showing Lyme...although I did have negative Western Blots. I asked him how reliable the BioSet testing is.....he said he finds the results to be VERY helpful in getting answers. The results hold alot of weight as far as he's concerned. This is the same feedback I had got from Scott the "Better Health Guy" about BioSet testing.

I then asked him about the positive IFA results I had from Igenix...and how much they are specific to Lyme. He said those results are also very useful in putting everything together.....along with my clinical symptoms. He said the whole picture points to Lyme.

He said I have MANY things going on. Heavy metals, mold, infections, Lyme, etc. He told my mom "You're daughter is a severe case....you will have to hang in there with her and help her as much as you can."

I told you guys...my Dr. is quite serious. I sometimes feel like the worst case EVER....but I know it cant be true.

So he asked me how things were going with my treatments with BioSET lady #1. I said I wasnt improving. He kind of looked down and shook his head.....he does that alot....makes me feel kind of like I'm a hopeless case.

He said that I need to tell her that I'm not improving. He said she is an expert....the BEST in the entire country and that if she cant do anything for me....then we're in really big trouble.

This was a little disconcerting.

Maybe its true that I'm the first one that hasnt showed signs of improvement.

I told him that she knows whats going on but shes been away in Canada....that I'll see her tomorrow and she's going to do more testing. He said that she NEEDS to be able to get me through the first steps or I'm not gonna get anywhere.

The reason is that the Lyme is creating so many toxins but they cant treat it or any possible co-infections or the heavy metals or ANYTHING because my body is not detoxing and I'm still highly reactive. Then he said they cant give me the supplements or anything else to HELP my body to detox because I will react to them. So....he said we are STUCK....until BioSET lady #1 can get me at a better place.

He said because my Western Blots and Co-infections were negative he cant use prescription meds at this time. He said it doesnt matter anyway because with the shape I'm in right now antibiotics would do alot of damage as far as worsening yeast and other things. He said antibiotics would do more harm than good at this point.

He said when things get under control and I'm eliminating some of these issues....he will use antibiotics. He said they are necessary. He agreed that my Western Blots would likely come back positive after antibiotics but he just cant give them to me at this time.

He said he wants to start me on natural treatment for Lyme. Samento...its one of the things Rinne has been taking. I asked him if taking the Samento would also treat any co-infections. He said that no...it wont treat co-infections.....just Lyme. He said there are other things specific for co-infections but he only wants me taking one thing at a time because of my sensitivities.

I asked him if we're ignoring co-infections right now...will the Samento even have any affect on the Lyme?? He said it would have a *little* affect....not alot.....but we need to start somewhere. He didnt want me to buy the Samento if I'm gonna end up reacting to it. He said that BioSET lady #1 has Samento and to have her test it tomorrow to see if I can take it....if I'm ok to take it I can get it from her and she'll tell me how much to take.

He said its just very important that she is able to "clear" things and get me detoxing and able to take supplements. He said when I'm ready for antibiotics he is going to really need to use lots of supplementation to keep yeast and other things in check during that time.

Probably the thing we spent MOST time discussing was my body temperature. This whole conversation made ALOT of sense to me. He was saying that my body temp is VERY low. I told him I'm ALWAYS cold now. I need to take hot baths and I'm feeling alot worse in the winter.

I told him how I feel MUCH better in the summer....especially when its REALLY hot....like during the heatwave...I hated it when my mom used the air-conditioner and tried to freeze me right out of the house.

I asked him if the Lyme was keeping my body cold.

He said that my body temp is low because this is what happens with ANY of the conditions I have going on. He said that bacteria, parasites, yeasts, heavy metals, molds....all of these things by themselves will bring the body temp down. He said that my temp. is really low right now and its CRUCIAL to get WARM.

Then he said THIS.....he said that when my body temp is low.....I am going to react to more things. That my allergies are going to be worse....*everything* is going to be WORSE when I'm COLD!!

He wanted to know how I keep warm?? He said everything I eat and drink should be warm....nothing cold...ever. My room should always be heated. We told him about the heater problem and he asked how we are keeping my room warm w/out the heater?? I told him I use lots of blankets. This made him put his head down on the desk.

He said blankets arent good enough....I need an electric heater. My moms gonna get one tomorrow. He didnt seem to think an electric blanket would be good for me.

I told him I still eat ice cream everyday.

THIS made him put his head on the desk and make fists...out of frusteration.

He said NOOOO...more ice cream. I told him I only eat it to keep my weight on....that I need it. I told him I melt it a little in the microwave first or sometimes eat it in the bath (as if that makes it better ). He said NEVER to eat it straight out of the freezer and if I must eat it....it needs to be warm. That actually sounds good to me....I hate eating it now that its winter but I still eat a pint a day. I only eat coffee flavor and chocolate. So now I will melt them and drink them like hot cocoa or hot coffee.

I told him how much worse I'm reacting to everything lately....he says that when my body temp is UP....this will get better. I ALWAYS knew there was something about the heat that truelly helped me and I dont react so horribly in the summer months. Now I know I'm not so crazy for loving those heatwaves!

He was basically telling me this...

Warm body = less reactions

less reactions = more tolerance

more tolerance = able to start treatment with supplements and meds

treatment = reduction of yeasts, bacteria, heavy metals, etc.

reduction of the "bad guys" = a higher body temp *naturally*

A higher body temp = better health and stronger body

He said as each of these bad things starts getting eliminated and detoxed I will feel my body start to warm up.

This is what happened when I first changed my diet to all organic....my body temp dramatically increased within a few days.

He was not so happy that I work in the dairy dept. either....I work in the cold.

At least *now* I know that part of my problems lately are really due to inadequate heat and eating cold ice cream every day and basically freezing the heck out of insides. I can fix this.

I told him I used to go to saunas everyday while I was off work and I loved the heat. He said he really wants me to go back...that saunas are GREAT. He wants me to try to go as much as I can because of the heat factor and also because of the sweating and detoxing....which is mainly why I used to go. I still have my membership so I'm gonna start going again....might as well....since I'm still paying for it.

So the plan for now is to continue working with Bioset lady #1. To get started on Samento and to keep my body HOT. My next appt. is in 4 weeks. Hopefully working with the bioset lady will get me somewhere during that time. I just keep hearing him say that if she cant help me....we are in big trouble. That scares me.

He talked to my mom about how all of this is affecting my brain and how when I get exposed to chemicals these things are going directly to my brain and affecting neurotransmitters and other scientificness that I have mostly dingo'd.

He told her that I really dont have control over my behavior and that she has to remember that this is not me and its not how I want to be. These are chemical reactions that are occurring and they can happen at any moment...from any exposure. He said this chemical imbalance will result in depression, rage, mood swings, brainfog, short term memeory loss, etc....it can happen in an instant.

He said I have lost concentration and memory and that it is HARD for me to pay bills or do other things that a "normal" person can do....that I will need help with these things for awhile. Everything my mom asked him he explained very well.....and its exactly what I feel is occurring inside me....and I DONT have the ability to control it when I'm having a reaction.

I dont know if my mom "got it".....but I'm glad she went with me today.

[Rachel--24]

So one of the most important things I learned today is that a higher body temp. means that everything in the body is working BETTER. This is my goal for the month....to see if I can really raise my temp. and reduce sensitivities and FEEL BETTER!

[Green12]

Hi everyone, sorry if I made anyone worry I've been busy with the holiday season

Lets see, I've missed so much, how fun that Donna is giving us little updates from her cruise Hi Donna, sounds like you are having a great time!!!

Hi to Mango, are you back yet? Great picture of the koala

Speaking of pictures, I love Rachel, Carla, and Susie's new avatars...Happy Birthday to Tika

Patti, I'm sorry about your ovary pain? If I understood that correctly, you think it might be cysts? Good luck with your Drs appointment, I hope you get to the bottom of things.

Yay Laura, I'm so happy that you and Eric have been reunited

Rachel, I read your appointment summary and I actually feel very optimistic for you. Sounds like he has a plan of attack for now, getting your body temp regulated for one, small steps and one thing at a time. I know that you would like to have more results with the bioset treatments but I think you will, just give it time. A lot of things are out of balance in your body, lots of toxicity and systems overburdened and sluggish or not functioning at all, imagine clearing away cobwebs and dusting things off, then cleaning everything out thoroughly and then restarting the engines, many many steps until you can get things moving and functioning properly again.