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Omg...i Might Be On To Something


Rachel--24

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miamia Rookie

Hey everyone-

donna so happy your trip went well

susan-

so happy your stools are solid and dingos are good

Rachel-

so happy you got to see a good movie and I second everything you said- I love everyone here!

Ok so I have been crazy overwhelmed thats why I ahve not been posting. I was waiting for results and got them I had a doctors appt. this week and we wetn over everything. My results were inconclusive- how frustrating. Basically if I had had one more plus by band 38 on both the igg and igm test I would have been positive by all standards- so my doc feels like I need more testing which I am glad about . So I had a bunch more blood work done (I will post the tests I had done later) .I also am going to start taking this new mediciene - which makes me nnervous becasue I don't ussually do well with mediciene but its for my motility and gastro issues . The good thinkg is I am having it compounded so it will just be the mediciene and no added junk.

I also am going to redo the stool test that tests for the yeasts to see what affect the diflucan had on the candida issues but I am waiting til next week to do it.

My doctor also has this acupuncturist he works with who deals sepcifically with motility issues and he thinks I could really benefit from this. I am gonna call him on moday and feel it out. I have done acupuncture before and for a while found it helpful.

Ok so thats my summary I think I hit on most things but I am sure there is more.

I hope everyone is doing well

Miamia


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Judyin Philly Enthusiast
I also am going to redo the stool test that tests for the yeasts to see what affect the diflucan had on the candida issues but I am waiting til next week to do it.

Miamia

HI

I did a post earlier yesterday on this subject.

can you share more or direct me to s sight on the ways you can test for yeasts = candidia..they are the same..tho yeasts can be different so need different treatment, right/

went on some web site but still don't seem to get it.

have dr apt where i want to address this a seeing him for yeast overgrowth.

Carla recommended the 'the yeast defence' book. did you find it helpful too?

judy in philly

AndreaB Contributor

Miamia,

I'm glad you checked in with us. I've been wondering how you were doing but wasn't real concerned as at least you had logged in to read.

I wonder if you could do the salt/vit c or take a short course of antibiotics to try to wake up the lyme (assuming you have it). I know antibiotics are terrible for the candida though. Have you looked into doing the bioset? What about checking in with the LLMD in your area and taking your tests to him?

CarlaB Enthusiast
Carla recommended the 'the yeast defence' book. did you find it helpful too?

judy in philly

The Yeast Connection.

Gayle, I'm seeing an LLMD Jan. 19th, if nothing is helping by then, I'm sure I'll be on antibiotics. I think it might be past what my own immune system can handle, but I have another month before my appt. to see.

Judyin Philly Enthusiast
The Yeast Connection.

Gayle, I'm seeing an LLMD Jan. 19th, if nothing is helping by then, I'm sure I'll be on antibiotics. I think it might be past what my own immune system can handle, but I have another month before my appt. to see.

SORRY CARLA...I KNEW BETTER.

YEAST DEFENCE IS WHAT I'M TAKING AS A SUPPLEMENT.

JUDY

dlp252 Apprentice
Donna,

know you posted what cruise line you went on but i forget. can you tell me again.

thanks

judy

It was Princess, and the ship we were on this time was the Coral Princess. I did have to remind them a couple of times of what "gluten" was, lol, but they got it when I said no wheat, oats, rye or barley.

Judyin Philly Enthusiast
It was Princess, and the ship we were on this time was the Coral Princess. I did have to remind them a couple of times of what "gluten" was, lol, but they got it when I said no wheat, oats, rye or barley.

THANKS SO MUCH DONNA.

GOOD TO HAVE YOU BACK.

JUDY


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Rachel--24 Collaborator
Rachel, I lie awake at night trying to figure out what's going on with you!

You mentioned the heat going on. THis is such a long shot and so simple, it's ridiculous, so it's probably way off base, but do you have an air filter on your heater? I think they are 11" x 16", and have cardboard edges, they slide out--and they need to be replaced. Often.

Alison, I've done that too!! Lying awake at night, thinking about everyone here. My mind never rests. :ph34r:

Last night I had a good night and I almost forgot I'm still sick...I love it when that happens. :)

My mom changed the air filter at her house when I started getting bothered by the heater. They also sealed the vent to the room I sleep in. It doesnt bother me anymore and I'm happy with my electric blanket.

At my own house I've been really lazy about going to the store to get the filter....it hasnt been changed in 2 years. I cant have the heater on here at all....its worse than it was at my moms house....plus I have pets. I *need* to get this taken care of today. Its really cold in my house but I dont turn the heater on....just wrapping myself up in my electric blanket. :rolleyes:

I dont have any humidifiers but I've been using those air purifiers in my room for a couple years now. I looked at those filters last weekend and they were FULL of dust. :o I've had to turn those off too...another thing I need to get taken care of today. I'm soooooo lazy though. :ph34r:

dlp252 Apprentice
I cant wait to see if you had gluten free pancakes shaped like mickey mouse ears!! This is what I had heard about....hopefully I'll find out myself someday soon. :D

Definitely had gluten free pancakes!!! But not shaped like mickey mouse head, lol, although my friend kept trying to get me to ask for them so she could have the mouse head shaped container they serve them in. :lol: I saw several kiddies get them though...and believe me, I am not above asking for mouse shaped pancakes, but for some reason just didn't, lol.

I bought Christmas Minnie Mouse ears (the kind you wear, not eat). :lol: Also bought kiddie socks to wear that have the individual toes knitted into them...they have Tinkerbell on them and surprisingly, they fit me (and I have big feet). Also bought MIckey head hair clips. :lol: Back in February when we went to Disneyland, I bought Minnie Mouse Sunglasses (made for little kids)...the sunglass part opens up to just clear, lol. I am a huge kid at heart and don't mind if people know it. :lol:

We went on Expidition Everest (a really fun roller coaster) three times in a row, then the next day on the Aerosmith Rockin Roller Coaster...very fun and very fast.

dlp252 Apprentice
The Yeast Connection.

I did this one too...it did help a lot when I did. It was one of the two times in the past few years that I felt really good and had no major health issues.

Rachel--24 Collaborator
It is too early in the morning to feel this bad, I'd like to say it is herxing but I think it is just me getting stressed. We are supposed to travel today and do an overnight visit with friends but the idea of dealing with two meals away from home and an evening party with wine and beer I can't enjoy just doesn't seem like a whole lot of fun at the moment. On the other hand last night we went out and got a Christmas tree and a whole day at home to decorate does. MMMmmmmm.

Rinne,

I hope you ended up enjoying the day decorating the tree. That sounds alot more relaxing. B)

I never got the tests you had done for mercury or other metals. Was this a recent test from when you went to the seminar?? I only had hair analysis which showed high cadmium and something else... I think bismuth?? :unsure:

I did have some kind of blood antibody test for mercury. It came back normal but I'm not convinced about that kind of testing. <_<

Judy, I worry about you. I have read that the bull's eye rash is a positive for Lyme disease, if I am remembering correctly you have had that rash four times. Lyme could be at the root of your health problems, the basic Igenex test for the IgG and IgM antibodies is about $350.00 U.S. and that is the test I had. Are you taking antibiotics for anything now?

Judy...me too...I worry about you also.

My Igenix test was 50% covered by insurance. I'm thinking it was less than $200 for both tests and insurance paid half of it. I think I paid around $100.

Rachel--24 Collaborator
I have been kicked off for awhile and just got a password from Scott that works!! Got on for 1 or 2 days a week ago but soon gone. I am lots better but will take some time to get more energy and more pills and DR. visits. Went shopping Wed and Friday, wore me out but sure was fun. :D evie

Evie,

So good to hear from you! Bummer that you're password wasnt working. We missed you.

YAY for shopping...I'm gald you had some fun! :D At this time of year shopping would wear anyone out!!! :lol:

Rachel--24 Collaborator
For dinner that day I had a real hamburger on a gluten-free bun, lol. AND FRENCH FRIES!!!

Rachel -- going way back, I'm sure you'll make it one day to Disneyland and I'm sure you'll be able to eat there!

OMG....I cant believe you had all that GREAT food!!!! :o:o

I am SOOOOOO going there!!! I wanna go on a cruise too...it sounds like you had such a good time. I'm glad you were able to have all that food and fun and not get sick!!! How great is that!!!

I have alot to look forward to. :) Thanks for sharing the highlights of your trip. I enjoyed the mini updates too! :D

Judyin Philly Enthusiast

RINNE & RACHEL-

Rinne, Geeze---think i'll ever spell you name right or at least the same way each post.. :ph34r::ph34r::ph34r:

I so appreciate your caring about me.

I will take my info to dr at 11:00 am tomorrow for the yeast/candidia apt.

I pray he will order Igenex for me...not not poo poo like the new lady dr i went to do.

she really sent me into a tail spin..

j

Fiddle-Faddle Community Regular
At my own house I've been really lazy about going to the store to get the filter....it hasnt been changed in 2 years. I cant have the heater on here at all....its worse than it was at my moms house....plus I have pets. I *need* to get this taken care of today. Its really cold in my house but I dont turn the heater on....just wrapping myself up in my electric blanket. :rolleyes:

I dont have any humidifiers but I've been using those air purifiers in my room for a couple years now. I looked at those filters last weekend and they were FULL of dust. :o I've had to turn those off too...another thing I need to get taken care of today. I'm soooooo lazy though. :ph34r:

Okay, my dear:

Not only do you need to change the filter, but if you don't change it every couple of months, you should vacuum it with the crevice attachment EVERY week!!!!! I'm not kidding, it makes a huge difference. So that means your mom is probably due to change the one she replaced already, or at least vacuum it.

You also need to contact a reputable heating company to come out and clean yor furnace twice a year. I believe that is considered standard maintenance.

You can't afford to be lazy about this, especially if you are expending so much energy running to doctors and Bioset (I am not implying that you shouldn't be, just that you're shooting yourself in the foot if your household air is poisoning you the minute you return home!!).

Sorry if I sound so stern--it's just that I care--very much!

Rachel--24 Collaborator
Rachel

I think I am in constant Herx because of the steroids and antibiotics. Steroids push my immune system down while the antibiotics, salt/C, sugar-free, gluten-free, corn-free is helping me to fight. I had to be on major doses because they thought my sinuses were full of fungus - I am going off them but it has to be a slow taper, or I think it will break my adrenal glands more.

Something happened today! Only on 30mg predinisone instead of 60mg. No gluten for a while. No sugar for a while. No corn recently. No MSG recently. Less Dairy. Hot Baths. Had a good Night Sweat during the morning- which I think means my body is cooking the bacteria. I thought I was going to die yesterday - today I think my immune system is winning!!!! Man, I am balanced on a fine line. Will be off steroids in about 5 days. Maybe no need to go to Mayo after all but I will pursue the Lyme test further if it is negative.

Yeah...you definately have to taper off of the prednisone. I took it for only one week about 3 years ago and I swear it made me worse. I had to taper off it even though I was on it for such a short time. I'm glad you're getting off of them though! YIKES...steroids and Lyme...not a good combo. :(

Thats great that you're feeling better....I remember what it felt like when I first changed my diet...my body temp. went up fast...it was AMAZING how much better I felt. Keeping warm with hot baths has helped me alot. Before I changed my diet when I was constantly feeling chills...I found myself taking up to 4 hot baths a day! I knew it wasnt normal but it was the only thing that made me feel better.

I didnt know you were doing salt/c....I must have missed that?? :huh:

How long have you been doing it and have you noticed changes from it?? Make sure you're taking a good probiotic while you're on the antibiotics. :)

Rachel--24 Collaborator
I'm having good and bad days but pray on Monday I WILL GET SOME ANSWERS OR A LEAST A PLAN OF ATTACK FOR MY WELLNESS...I'M TIRED OF THE ROLLIE COASTER RIDE.

Judy, I'm praying you get some answers tomorrow too. :)

Rachel--24 Collaborator
Yes, I've decided I LOVE cruising and need to do 3 more short ones so I can get free Internet to keep up with this thread, lol.

:lol::lol:

Yeah....free internet...very important! :lol:

Rachel--24 Collaborator
I'm busy Christmas shopping and now wrapping packages. Our "first" Christmas is Tuesday, at our house, with my parents. Then 'regular' Christmas Eve/Christmas-this year we'll be with Eric's family. Go to GA for our other Christmas with all of my family, including parents, siblings, 87 year old grandma, and our sweet nieces :) So there is lots to do, needless to say. I'm an elf today, I think.

Sounds like a fun week you have ahead you!! Laura the elf! :lol::lol: Very cute.

You'll be so busy with family and festivities your results will be here before you know it. ;)

Enjoy your week!

Rachel--24 Collaborator
You guys are always welcome at Lymenet!! :D

If I don't see you folks for awhile....MERRY CHRISTMAS!!! I'm headed to Texas Monday....gone several weeks. Send any snow you don't want! :P

gayle

Gayle,

Have a great holiday....I dont have any snow for you....we're "snowless" here in CA....which is a GOOD thing for me! B)

I would LOVE to wake up on Xmas and see snow for once though...that would be REALLY cool...as long as it only lasts for one day...I could totally deal with that. :D

I did register at LymeNET...I've done plenty of reading but havent posted yet.

I'm shy. :ph34r:

Rachel--24 Collaborator
If you have lyme disease, and you have a major episode(s) from late stage neuro-LD which causes you to have all sorts of complications including becoming gluten-intolerant, if you can rid your body of Lyme, Mercury, Candida, Allergans, will everything else resolve? Like celiac disease?

I believe that with proper treatment and immune support the body can recover. Our bodies *want* to heal...the immune system is always fighting to get back to its normal healthy state....its just that things are dragging it down...preventing it from happening.

Once those things are "out of the way" the immune system will bounce back. If you have developed Celiac...then you will have to stay on the diet. Eating gluten will continue to put stress on the immune system. Even after recovery it will still be causing stress...even if for awhile you are able to eat it with no noticeable symptoms.

In my case I dont have Celiac....no celiac genes....I know that I'm gluten intolerant and it *may* get better with healing but I dont want to take chances. Its believed that Lyme can never be 100% erradicated from the body. It can be dealt with and the immune system can once again become strong enough to hold it in check once the Lyme load is much smaller.

It can come back again if the immune system becomes compromised. Any serious stress on the body can allow the Lyme to once again get the upper hand. The bacteria is opportunistic so you wouldnt want to give it any opportunties....you would want to keep your immune system as strong as possible. This is why I'll stay gluten-free.

Since I dont have Celiac I'll probably treat myself occassionally if I'm healthy and dont get symptoms...but I wouldnt risk regualr consumption "in case" its causing stress to my immune system.

If you have Celiac...you need to just stay 100% off gluten.

Rachel--24 Collaborator
Life is good here, though. Work's good, life is fine, and the poops are solid. ;)

:lol::lol::lol:

Yup....life is good when the poops are solid! :D

Life is good here too. :D

Rachel--24 Collaborator
Ok so thats my summary I think I hit on most things but I am sure there is more.

I hope everyone is doing well

Miamia

Hi Miamia :)

Wow...you've had alot going on! I've heard good things about acupuncture...hopefully it can help you with some of the digestive stuff or any other symptoms.

I'm looking forward to seeing your test results if you post them. Right now I'm waiting for one test result that wont be in till after Christmas. I want to possibly take antibiotics briefly and then redo my Lyme tests...or do the urine test for Lyme bacteria. Still thinking about it.

Hope you have great holidays and just believe that you're heading in the right direction...you're gonna turn that corner and start getting some real answers. I just know it....you're gonna get better. :)

Rachel--24 Collaborator
Definitely had gluten free pancakes!!! But not shaped like mickey mouse head, lol, although my friend kept trying to get me to ask for them so she could have the mouse head shaped container they serve them in. :lol: I saw several kiddies get them though...and believe me, I am not above asking for mouse shaped pancakes, but for some reason just didn't, lol.

ROFL... :lol::lol:

I'm not above that either! Trust me if I'm *able* to eat gluten-free pancakes when I go to Disney.....they are NOT gonna be regular round pancakes...they're gonna have MOUSE EARS for sure! :lol:

The whole trips sounds like so much fun Donna...I'm really glad you decided to book it and go. :)

Rachel--24 Collaborator
The Yeast Connection.

Carla, I have this book too. I have a few candida books but my favorite and the one I found to be most helpful was "The Yeast Syndrome". Its a really good book.

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    • catnapt
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    • trents
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    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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