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Rachel--24

Omg...i Might Be On To Something

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I wake up with a very tiny stomach since im underweight...and then by the end of the day it starts looking pretty round!

When I first got sick I was getting bloated like that. I hadnt lost any weight yet but I would look VERY pregnant at the end of the day.

Somehow the bloating stopped a few months ago.....it definately has to do with what I was eating.

I'm thinking alot of the bloating issues comes from Candida or food intolerance....not so much the co-infection.

My symptom list is pretty long and some have come and gone over the past 4 years.

Here are some of the main ones

Headaches

Burning/tingling

Swollen Glands

Numbness

Nightsweats

Chills

Blurred vision

Chemical sensitivity

Bloating

Weight Loss

Depression

Modd swings

Fatigue

Sensitivity to light and smells

Food intolerance

Brainfog

Fluid retention

Stiff neck

Joint/muscle pain

hairloss

"Stupidness" :P

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Speaking of BioSET, do they give you any kind of printout of what they find? I don't know how I'll remember everything.

Yeah...they do give you a print out of everything. I asked her if she works on Saturdays and she does. I'm thinking she probably always does the initial testing as well....so it should be her. :)

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Yeah...they do give you a print out of everything. I asked her if she works on Saturdays and she does. I'm thinking she probably always does the initial testing as well....so it should be her. :)

YAY!!!!!! :lol:

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Miamia,

I tried to find out about the c6 test. It sounds like its specific for Lyme...but not at all sensitive...most people test negative with the c6...but then are positive on other tests including the Western Blots.

It *seems* to me that if you do test positive on the c6....then you have Lyme.

The C6 peptide sequence is highly antigenic, generating an immune response in nearly all human cases soon after infection, and it is specific to Borrelia strains causing Lyme disease. It is not found in other infectious organisms, eliminating cross-reactivity at the source.

The urine test is the MOST specific test because its looking for the actual DNA of the Lyme bacteria. If thats positive then there is absolutely no question....but that one is a hit or miss. Its only like 30% sensitive...its more likely to get a negative....even if you have Lyme.

The most sensitive tests that are "widely accepted" are the Western Blots.

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Hello all and welcome peacenlove :)

we had a great Christmas coz I cooked lol :lol: managed to find some gluten-free stuffing and gluten-free christmas pud and the emal turned out great. Unfortunately.....I woke up on Christmas eve with an infected toe so ended up on antibiotics (it was too painful to walk) and felt totally fogged Christmas day (without alcohol!). The antibs made me feel v sorry for myself and I eneded up eating loads of thins I shouldn't have (not gluten, but chocolate etc) eek! :ph34r: Kind of been justifying it on the basis that I'm due to start my elimination diet in the new year, so this was one final mad binge....

So, as someone facing serious detox over the next few weeks, for those of you who eat very few foods, how do you survive on such a restricted diet? What do you eat for breakfast? My diet is basically going to start with sweet potatoes, parsnips and squash for carbs, turkey, white fish & lamb, and a v few veggies and couple of fruits. Breakfast is a big problem for me as it's first thing in the am that I feel sickest, but also the time when I need most food. So I'm going to have to be prepared else I'll fall at the first hurdle. Any brain waves for brekkie will be v welcome :)

Rachel, do you reckon I could make a pumpkin pie out of just pumpkin, sweet potato and parsnip?! (silly question, I know...).

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Susie...I found a Turkey sausage at Whole Foods (a chain health food store), which only had turkey and spices as ingredients, so I've been eating that for breakfast. I have also reintroduced eggs, which seem to be sitting well, lol, so I have that too. I alternate that with some bars my doctor sells, which is "legal" for the elimination diet, onto which I put some nut butter. They also sell a protein type powder mix which I make up with some water, frozen fruit, nut butter and Stevia.

I've mixed pumpkin with sweetener before and it tastes pretty good, lol. I can't have any sweeteners on the elimination diet except for stevia and fruit juice.

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Hello all and welcome peacenlove :)

So, as someone facing serious detox over the next few weeks, for those of you who eat very few foods, how do you survive on such a restricted diet? What do you eat for breakfast? My diet is basically going to start with sweet potatoes, parsnips and squash for carbs, turkey, white fish & lamb, and a v few veggies and couple of fruits. Breakfast is a big problem for me as it's first thing in the am that I feel sickest, but also the time when I need most food. So I'm going to have to be prepared else I'll fall at the first hurdle. Any brain waves for brekkie will be v welcome :)

Miamia- yay, someone who knows how I feel! I eat about every two hours and im NEVER hungry...it does become painful when I can't get it all out. How often do you eat, is your diet restricted?

Rachel- I think you're right, the bloating is probably food and cadida related. I'm on Grapefruit Seed Extract (GSE) right now for the candida but that's about it...later on I go on Oil or Oregano, I dont think if that will help too...and perhaps the catnip will? im not sure. But do you have any candida advice?

cozsooze, thanks for the welcome :) Gosh, you are speaking to the QUEEN of restricted diet. Haha, there's only about a handful of foods that I can eat, which is torture when you're on a 2500 weight gain diet. It's awfully hard to figure out. BUT I got SOOOOO excited when you mentioned sweet potatoes because that's a HUGGGGGGGGGEEE part of my diet! Plain baked sweet potatoes are my favorite food in the entire world. haha. My advice though is to look for JAPANESE sweet potatoes, they have an absolutely delicious flavor and texture. You can find them at whole foods. Breakfast used to be a struggle for me too because nearly every breakfast item out there has some kind of grain in it...but now I'm eating this hot rice cereal called "Rice and Shine" made by Arrowhead Mills I think...Lundberg also makes one but I don't like it as much. I eat it with a ton of fruit.

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Miamia- yay, someone who knows how I feel! I eat about every two hours and im NEVER hungry...it does become painful when I can't get it all out. How often do you eat, is your diet restricted?

Rachel- I think you're right, the bloating is probably food and cadida related. I'm on Grapefruit Seed Extract (GSE) right now for the candida but that's about it...later on I go on Oil or Oregano, I dont think if that will help too...and perhaps the catnip will? im not sure. But do you have any candida advice?

cozsooze, thanks for the welcome :) Gosh, you are speaking to the QUEEN of restricted diet. Haha, there's only about a handful of foods that I can eat, which is torture when you're on a 2500 weight gain diet. It's awfully hard to figure out. BUT I got SOOOOO excited when you mentioned sweet potatoes because that's a HUGGGGGGGGGEEE part of my diet! Plain baked sweet potatoes are my favorite food in the entire world. haha. My advice though is to look for JAPANESE sweet potatoes, they have an absolutely delicious flavor and texture. You can find them at whole foods. Breakfast used to be a struggle for me too because nearly every breakfast item out there has some kind of grain in it...but now I'm eating this hot rice cereal called "Rice and Shine" made by Arrowhead Mills I think...Lundberg also makes one but I don't like it as much. I eat it with a ton of fruit.

Yes I am on a very restricted diet but at this point it does not resemble anything like what most people recommend. After a zillion elimination and so on I have found what sits best(not great) but best and figured out meals around those things. It is definitly unique to me. I can't do brown rice really and I can't do fruit- especially with the candida issue- I can't do sweet potato- all the foods they say are least allergen causing I can't do so I have the miamia safe foods instead.

I feel often like I eat all day- and am never hungry- eating is very painful for me most of the time. I have actually been "hungry" like 2 times in te past three months. Its awful becasue I love food. I don't care that I am not hungry I still make sure I enjoy my food as much as I can and take time preparing it so at least it tastes good. I haev always loved food so the loss of appetite is horrible for me. I feel often like my days just revolve around eating - I am on a very strict schedule with food and it makes it so having a real life is nearly impossible the horrible thing is I don't even gain weight but at least I have not lost recently abn==nd I think it is what has kept all my prgans and general health in tact without being reliant on supplements.

I'm sorry you can realte to this but I am also happy I am not alone especially with the no appetite issue

Miamia

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I'm sorry you can realte to this but I am also happy I am not alone especially with the no appetite issue

Miamia

Thanks for your reply Miamia. The thing that I'm so scared of with the elimination diet is my 'relationship' with food. I think I'm addicted to various foods that I'm probably intolerant too and I used to love eating, but like you have to eat almost constantly. It's the mental part that I struggle with - thinking about food all day long. And I haven't even started the elimination diet yet lol! But I'm just hanging on to the hope that it makes a big difference. And that's what I hope for everyone else here too :) That and the fact that I can't wait to tell my GI in Feb how much better I feel without chocolate etc (she doesn't believe coeliacs have any more chance of food intolerance than the general population :rolleyes: )

peacenlove: thanks for the tip about sweet potatoes. Don't know if anywhere here (UK) sells Japanese ones. I'll look next time I'm in Tesco :)

Donna: thanks for the idea about turkey sausages. I guess with the items in my diet I could make some of my own and freeze them. Uh oh, I'm going to have to get organized! ;):rolleyes:

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I too want to wish all my Rachelvillians the happiest of holidays, and the best of new year's. May we all come out of the various celebrations unscathed.

At least we can regroup in our cult farm and share horror stories :P

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Ryan!!

Good to see you!

How have you been. Have you started you assignment on Greenland (was that it)? When is that assignment over?

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Yes I am on a very restricted diet but at this point it does not resemble anything like what most people recommend. After a zillion elimination and so on I have found what sits best(not great) but best and figured out meals around those things. It is definitly unique to me. I can't do brown rice really and I can't do fruit- especially with the candida issue- I can't do sweet potato- all the foods they say are least allergen causing I can't do so I have the miamia safe foods instead.

I feel often like I eat all day- and am never hungry- eating is very painful for me most of the time. I have actually been "hungry" like 2 times in te past three months. Its awful becasue I love food. I don't care that I am not hungry I still make sure I enjoy my food as much as I can and take time preparing it so at least it tastes good. I haev always loved food so the loss of appetite is horrible for me. I feel often like my days just revolve around eating - I am on a very strict schedule with food and it makes it so having a real life is nearly impossible the horrible thing is I don't even gain weight but at least I have not lost recently abn==nd I think it is what has kept all my prgans and general health in tact without being reliant on supplements.

I'm sorry you can realte to this but I am also happy I am not alone especially with the no appetite issue

Miamia

Miamia, I wanted to cry when I read this...because It makes me both really happy and really really sad. On one hand, I now know that im not the ONLY weirdo in the world who has to eat like this and live life like this (and I meant that in the best way! haha) but on the other hand, I feel really sad that you have to go through what I do everyday. You explained it perfectly. My life is consumed by eating. I'm on a strict schedule and diet too. And since everything is cooked or can't really be taken with me, I don't get out much and i NEVER eat out. I also have a strange diet! For example, I have uncommon sensitivities to beef and to ALL oils...so since I can't eat oils, everything I eat is under 1 gram of fat...which I don't think is too good for my organs. My heart especially. It sounds like your eating patterns and strategies are a lot like mine. What's your schedule, what do you usually eat? My schedule saves me, but at the same time drives me crazy. Some days I wish I could throw it out the window and let myself get hungry, but I know if I did that I'd end up panicking and practically binging later on to make up for it.

Anyone else want to share their diets/schedules? haha...

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Hi yall - I think you set a world record for the number of pages in this one topic. LOL

I've been reading the latest pages about Lyme and yall have really blown me away.

My 14 year old son has so many of these same Lyme symptoms, and he is also gluten intolerant.

In a week when our doctor comes back from vacation we are going to do a Lyme test on my son. My sister and my brother both are VERY sick with Lyme Disease, and I am sure a few more undiagnosed relatives.

We just went to a new doc today who wanted to do a CAT scan. What the heck for? How is that going to help with gluten problems? Is it just to rule out other problems? We dont have any insurance and it will be $1000. GASP! We absolutely cant afford it, and I guess I was just sitting there in shock because I should have asked him WHY. He did take some blood to check iron and gliadin levels. He sent us home with a kit to test stools for blood.

The main thing that worries me is the intense stomach pain my son deals with almost constantly. I learned yesterday that Lyme Disease can cause stomach pain and nausea... did yall know that?

ARK

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Welcome ARK!

I don't know if you know this (you may). But since you have a week you may want to make sure that your doctor uses Igenix for the Western Blot test.

I don't have lyme so I can't answer you questions about stomach pain. If it's not lyme related then I'd say offhand soy or dairy. Many here have gone through an extensive elimination diet in order to try and stay on top of things before diagnosis.

Ask any questions you have and we look forward to seeing you here more. :)

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Just popping in...Have to bake a gluten-free choc cake for guests tomorrow...

I heard from a friend over Xmas. She was bitten by a tick and has the rash and Dr thinks she has Lymes. What can I tell her to make sure she gets the right treatment. What lab is best/ What antibiotic is best. How long does she need the antibiotics if she was only bitten 3 days ago?

Happy New Year to everyone !!

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The main thing that worries me is the intense stomach pain my son deals with almost constantly. I learned yesterday that Lyme Disease can cause stomach pain and nausea... did yall know that?

ARK

Hi Ark. :)

Sorry to hear about your son. :(

What Andrea said is correct....Igenix is the best lab to use for Lyme testing. Lyme testing isnt reliable to begin with which is why Lyme is a "clinical" diagnosis. Many times the tests come back false negative.....for various reasons.....but Igenix has the most sensitive test. The best test would be the Western Blot.

Yeah...Lyme can cause stomach pain....it can affect any organ or body system so symptoms can mimick almost *any* disease. Lyme is known as the "Great Imitator".

I would call and find out why they want the CT scan. I actually had a few of those, an MRI, X-rays, a gazillion blood tests and saw just about every specialist. None of them figured anything out and all the tests were normal.

Its good to get things ruled out but if cost is an issue and you feel *strongly* that you know what could be making him sick.....you should follow your instinct. I thought I might have Lyme but none of the Dr.'s listened to me....then 4 years later I ended up in the *right* Dr.'s office. He recognized that I could have Lyme right away and ordered the tests. He used Igenix.

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Just popping in...Have to bake a gluten-free choc cake for guests tomorrow...

I heard from a friend over Xmas. She was bitten by a tick and has the rash and Dr thinks she has Lymes. What can I tell her to make sure she gets the right treatment. What lab is best/ What antibiotic is best. How long does she need the antibiotics if she was only bitten 3 days ago?

Happy New Year to everyone !!

Georgie....hope the cake comes out good. :)

The best advice I can give is for her to see a Dr. who specializes in Lyme. The main reason I'm saying this is because they are the ones who truelly understand that 21 days of antibiotics isnt always enough when it comes to Lyme.

Fortunately, she caught it early and the Dr. isnt dismissing it. She has a VERY good chance of getting rid of it. Sometimes after the course of antibiotics a person will continue to experience symtpoms and progression of the disease. ALOT of Dr.'s at this point will say that its NOT Lyme....they will then say that the person has CFS or Fibro and that theres nothing else they can do.

This is where the "politics" of Lyme comes in. Its basically all about the insurance companies not wanting to pay for the antibioics required to effectively treat Lyme.

So she needs to be aware of that if she has symptoms that dont go away or if she gets symptoms at some point down the road. Its never been proven that the bacteria can be completely erradicated from the body but those who treat right away have the best luck.

Also, suppose her immune system is in good shape right now and she doesnt have any symtpoms because her immune system has the "bug" in check. This is common...its alot like Celiac in that the problem can be there but you wont be aware of it until something *triggers* it....like an illness or stress....something like that. If the antibiotics dont do the job then she *could* potentially suffer symptoms later on when her immune system is compromised by something else and the Lyme is able to go unchecked.

These are the reasons I would sugest she see a good Lyme Dr.....*just in case*. I dont think we can ever be too catious when it comes to stuff like this. After all the horror stories I've read about how regular Dr.'s are handling this disease...I wouldnt trust one of them to handle a Lyme case....even one which is caught early on.

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Miamia, I wanted to cry when I read this...because It makes me both really happy and really really sad. On one hand, I now know that im not the ONLY weirdo in the world who has to eat like this and live life like this (and I meant that in the best way! haha) but on the other hand, I feel really sad that you have to go through what I do everyday. You explained it perfectly. My life is consumed by eating. I'm on a strict schedule and diet too. And since everything is cooked or can't really be taken with me, I don't get out much and i NEVER eat out. I also have a strange diet! For example, I have uncommon sensitivities to beef and to ALL oils...so since I can't eat oils, everything I eat is under 1 gram of fat...which I don't think is too good for my organs. My heart especially. It sounds like your eating patterns and strategies are a lot like mine. What's your schedule, what do you usually eat? My schedule saves me, but at the same time drives me crazy. Some days I wish I could throw it out the window and let myself get hungry, but I know if I did that I'd end up panicking and practically binging later on to make up for it.

Anyone else want to share their diets/schedules? haha...

I am able to handle certain fats I try to make it a point of getting these ones in where ever I can- olive oil, salmon, some seeds( pumpkin, sunflower) With the seeds I roast them myself to clean bacteria and then make them with vegees and oil into a paste (If there not pureed though they are to hard to digest- same with alot of vegees) . I can;t do beef either and most meats if not all I can;t do. Certain fishes I can handle and certain amounts of chicken( which is good becasue for a while I coulden't do this) I eat 3 main meals and 2- 3 small meals. Everything needs to be cooked prety much- especially veggees raw for me is a big no no. Even though I have candida issues I eat some carbs becasue I am so under weight and me and my doc both agree that anything I can get in me that does not cause a really obvious reaction I have to eat. Most of my foods I cannot take with me so yes I eat mostly inside. I never eat out either. I totally get what you mean about your schedule saving you but also drives you crazy. I hate that eating runs my life but at least by having this schedule I am controlling something.

What do you eat?

What is your schedule like?

Miamia

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Just popping in...Have to bake a gluten-free choc cake for guests tomorrow...

I heard from a friend over Xmas. She was bitten by a tick and has the rash and Dr thinks she has Lymes. What can I tell her to make sure she gets the right treatment. What lab is best/ What antibiotic is best. How long does she need the antibiotics if she was only bitten 3 days ago?

Happy New Year to everyone !!

She needs to get on the right antibiotics IMMEDIATELY and stay on the for --- hmmm, I'm pretty sure it's 3 weeks. This is her ONE and ONLY chance to get rid of it completely. Do NOT rely on alternatives, this is the time to try conventional medicine first. It's my understanding that the rash means she should start on antibiotics BEFORE the lab results come back. Time is of the essence. Igenex is the best lab.

Edit -- Rachel posted at the same time as I did. It's true that if the 21 day round of antibiotics doesn't take care of it, it can still be Lyme. But if started right away, I think it's something like 70% of the time it will take care of the infection. The problem with all of us is that the treatment was delayed.

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Miamia,

I tried to find out about the c6 test. It sounds like its specific for Lyme...but not at all sensitive...most people test negative with the c6...but then are positive on other tests including the Western Blots.

It *seems* to me that if you do test positive on the c6....then you have Lyme.

The urine test is the MOST specific test because its looking for the actual DNA of the Lyme bacteria. If thats positive then there is absolutely no question....but that one is a hit or miss. Its only like 30% sensitive...its more likely to get a negative....even if you have Lyme.

The most sensitive tests that are "widely accepted" are the Western Blots.

Thanks for the info rachel I had done some research too and it just kind of left me confused. I canno believe how hard it is just to find a definite diagnosis. It is so frustrating!!!

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Rachel, do you reckon I could make a pumpkin pie out of just pumpkin, sweet potato and parsnip?! (silly question, I know...).

I'm probably the last person here you would ever want to ask about baking stuff. :lol:

I dont see why it wouldnt work....if you know how to make pies from scratch you could probably do it! I'm gonna have to stick to my gluten-free *store bought* pumpkin pie. :P

Well actually I might not get one until next year cuz they didnt have anymore at Whole Foods. I may have to scope out all the other Whole Foods in my area. <_<

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Rachel-

When is your next bio set appt?

I go on Tues and Thursdays every week....except this week cuz they are closed. :(

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It's my understanding that the rash means she should start on antibiotics BEFORE the lab results come back. Time is of the essence.

Yup....the rash means she has been infected with Lyme and treatment with ANTIBIOTICS should not be delayed. The Dr. should never wait for a positive test result when there is a rash present and the person is in the intial stage of infection.

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Thanks for the info rachel I had done some research too and it just kind of left me confused. I canno believe how hard it is just to find a definite diagnosis. It is so frustrating!!!

It *is* frusterating......VERY frusterating.

I think you *DO* have a definate diagnosis though. I could understand why your Dr. is wanting to get more tests for insurance reasons but I think as far as wanting to know for *yourself*.....you already have the answer. :)

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