Omg...i Might Be On To Something

[NoGluGirl]

Oh Claire! How exciting about dairy. I don't miss dairy a whole bunch (other than milk, cheese and butter, lol), but I would LOVE some yogurt for breakfast in the morning! All the corns were a problem for me, even the syrup, but the BioSET lady thinks it's mainly a mold issue since my testing went crazy with the molds/candida.

Dear dlp252,

As far as the mold in your home goes, toxic mold can make you and your whole family terribly sick. If it is bad enough, you may actually have to leave your home. Candida sufferers particularly are vulnerable. I have read things that said toxic mold has even been blamed for lung cancer and ulcers! I sneeze until I nearly pass out while in the shower if I stay in too long because of the mold. It is stuck to the door, and I have tried Brillo pads and everything else to try and get rid of it. Bleach is the best thing to kill it, but if it is too wide spread, some people actually have had to move out of their homes and throw away all of their books, stuffed animals, etc. due to everything being contaminated. You were diagnosed with h. pylori? I underwent the treatment for that before. It is hellacious! All of those antibiotics are so hard on your system! I did not have trouble losing weight until after I did those!

I have some info that could help you. Though I did not end up having it, I did do a lot of research on it.

An outfit called Life Enhancement sells some nice supplements, one of which is Mastic Gum. It has been known to kill h. pylori. Also, broccoli sprouts contain sulfurophane, so if you can eat an ounce of those a day (about 3 broccoli florets) that could destroy it, too. People on here mentioned the nausea with candida. I have that, too. It is awful! I was doing better for a while, but after those antibiotics, I have been almost as sick as before. The reflux is better, but I worry it will get worse. My lower abdomen is so swollen, no matter what I do, I cannot lost much weight. I crave sugar too, but limit my consumption.

Sincerely,

NoGluGirl

[NoGluGirl]

Why were you taking Flagyl??

My tests for Celiac were negative too...I dont have it.....I dont carry either of the celiac genes. Were you ever gene tested to find out if you're susceptible to it??

I have gluten intolerance....probably caused by candida....the candida was probably caused by my immune system being run down by either Lyme, mercury or both.

Dear Rachel--24,

I was on Flagyl because I told the doctor I had trouble "down below" and thought it was a yeast infection. She argued that by the symptoms, it was a bacterial infection. The thing is, I went on the antibiotics, and felt absolutely awful during and after taking them. Then my symptoms "down yonder" got worse. The Monistat 1 day treatment help for a week, which was better than nothing. If it was a bacterial infection, that would not have helped at all! Right? Of course, telling a doctor anything is like banging your head against a brick wall. It is pointless usually.

I was never tested for the Celiac gene or gluten intolerance gene. I do not have insurance, and cannot afford it. I cannot afford testing at all. I live with my parents, and they barely make their bills.

All I know is, I responded to the diet. If it came from anywhere, Mom's side of the family is a possibility. She, my aunt, and uncle all three had to be put on 2% milk instead of formula because they did not tolerate any of them! My brother and I both spit up every formula they tried us on (especially those with iron) so this is a good possibility. My brother refuses to give up doughnuts, Debbie Cakes, or anything else despite the terrible IBS he has.

Mercury poisoning is something that is important to be concerned about. I eat a lot of tuna, so that would not be totally unlikely for me. Lyme disease is another thing, since I used to spend a lot of time outside when I was young. We never did find any tick bites. Mom always checked us when we came inside. My immunity has always been low. Since I was an infant, I had broncchitis twice a year.

Sincerely,

NoGluGirl

[NoGluGirl]

same here!!! hmm...you had pain in your face when it was bloated? Wow...i've only had that in my stomach. I'm sorry to hear that you had that same feeling in your face, that's torture! I hope that doesn't happen to you anymore. I think it's all of my allergies that's causing my face to bloat too...even though my diet is SO strict. It's like you said...we're allergic to EVERYTHING. THe only time I didn't have bloating in my face was when I practically stopped eating, but then I ended up at 80 something pounds and in the hospital, and we can't have that! LoL. But I also have this weird bloating usually right below my bellybutton...ugh. It's so unnatractive with the stick thin arms...

I'm glad you're feeling good! Yea I'm going through the die-off right now too...not all that much fun...but at least you'll be able to complain to people that actually know how you feel!

Good, now that's two people that have said that they have weird eye things going on too...im NOT going crazy, yay! LoL. Yea it actually does hurt me too...it feels kind of like...a heavy pressure?

Aww I hope you stop herxing soon then

Thank you And congrats on the dairy. I've been cleared multiple times for dairy because my allergy keeps coming back (due to the parasites, says my BioSET lady). So the only "safe" dairy product that I seem to be able to eat is this nonfat fruit juice sweetened organic yogurt that I found at whole foods. I would look for it if you're looking for something to start off with. I've found that I can only eat it occasionally though.

I noticed someone mentioned flagyl...ugh. When I started taking it, I ended up so sick that I couldn't finish it and I had to stay in the hospital for 10 days So whoever is taking it...my heart goes out to you.

Dear peacenlove_girl17,

Thank you for the good thoughts. I took it back in I think early November, and I have been sicker again since. Wow, it made you very ill too! I had to dope myself up on promethazine just to finish the course of those pills. I could hardly stand it. Now it has set off a whole other set of things. I was doing so much better up until that point! Flagyl is a very brutal drug on your body. The bloating in the lower abdomen is a major frustration, too. I get it right below my bellybutton too! It just never goes away!

Sincerely,

NoGluGirl

[NoGluGirl]

What I've heard is that the bacteria in our bodies has a function. If we don't have the bacteria, then the function it's supposed to accomplish doesn't get done.

I know if we use anti-bacterial handsoap in our house, then several, but not all, of my kids will get this really bad skin on the backs of their hands. If we just use regular soap, it doesn't happen. Obviously, there is some bacteria on their hands that needs to be there. I am guessing it's some kind of fungal/yeast infection they must get with the anti-bacterial soap.

Same thing with the way produce used to be grown. There was bacteria in the soil ... but now we deplete our soil of everything and add the nutrition back into it with artificial fertilizers. Not only do the fertilizers not necessarily give all the nutrients to the plants/our food, but also the bacteria that was in the soil never makes it into our bodies.

I don't know if the immune system malfunctions when it's a sterile environment ... I just haven't read about it ... it could very well be true. I think that the bacteria in our bodies, the bacteria that should be there, is almost part of our immune system's function ... like the bacteria keeping down the candida overgrowth.

There's a new Grey's Anatomy on tonight ... it was good. I loved the bank scene ... I'll say no more! Good night all! Adam's already called once to be sure I was in bed (I'm not). I told him that I don't really see why it matters ... I've been sleeping 12-14 hours per day (or more). Something's gotta be working, right????

Dear CarlaB,

I have had that rash for years, too! Antibacterial soap can cause that, but mine is from dyes too. I am allergic to a few of them. No matter what soap I use, this rash is there during the winter and fall. It really sucks and it can be painful. If the Crocodile Hunter was still alive (I miss him!) he would be bagging my head and sticking me in the zoo! I have scales! No matter what I do, the rash does not go away. It also feels hot to the touch sometimes and blotches of bright red appear. Another thing you need to be careful using antibacterial soaps for is if you have thyroid problems. The antibacterial ingredient triclosan impairs thyroid function.

Grey's Anatomy is one of my favorite shows too! Cristina is my favorite. The scary part is if I were a doctor, I would be Cristina! (Either that or a female version of Becker or House). That is a scary thought, huh? Now they put the Sopranos on A&E, which makes me ecstatic! Bada-bing!

Sincerely,

NoGluGirl

[Rachel--24]

So some of you Lyme experts...what's your opinion on tetracycline to treat it? I read that Lyme encompasses a few different bacteria so will Tetracycline work on every one of them?

First, you're not a "dumbass"...ok.

I can only comment on this right now cuz I'm running late for work.

Tetracycline isnt standard treatment for Lyme. It might be something that can be tried later on if other antibiotics fail but typically its not used for starting out on Lyme treatment....as far as I know. Doxy is used for Lyme treatment and some others.

Be back later.

[dlp252]

What did you think about the fructose stuff? Didn't you say you had a problem with fructose? How did you know? I don't have a problem with fruit, as far as I know, but thought the corn syrup response was interesting.

Claire

I've suspected for a long time that my body doesn't process any type of sugar well, but I've just ignored it for the last year or so. (I know, duh Donna, lol) Fructose came up on the BioSET testing as a problem...all the sugars did no matter what form they were in.

What surprised me the most about my testing was the fats...I eat so much fat because that's the only thing that seems to keep me full and I always thought my body did well with them, but according to the BioSET thing, my body can't handle any of them, even the good stuff like olive oil. All the stuff that had fats, like avocados and nuts came up as problems for me.

[dlp252]

There's a new Grey's Anatomy on tonight ... it was good. I loved the bank scene ... I'll say no more!

Dang....forgot to set my recorder!!!!

[dlp252]

When I was really bad my mom was begging them to put me in the hospital cuz I was losing alot of weight and I couldnt keep food down. I was weak and could barely hold my head up. The doctors wouldnt put me in the hospital because they said I was fine....since I could still drink water.

I think they just never took me serious and thought it was all psychological.

!!!!!

[dlp252]

Question 1: Have any of you heard of this mangosteen juice which I cannot name here for some reason and what do you make of it? Snake oil yes or no?

Sorry, haven't heard of it...I'll try to look it up in a bit though.

Question 2: I had to take my oldest daughter to see the dr. today and he said that he was going through some of his journals looking for some possible answers for me and he came across something called Whipple (sp.?) Disease. I haven't looked it up yet myself but he thought it may be a possibility as well. Have any of you heard of it?

I've heard of Whipple disease, but can't quite remember the details. I came across it a lot when I was looking up the Whipple Procedure which is what I thought I might have to have if they had to removed a growth on my pancreatic/bile duct opening.

Question 3: My dr. told me that he got my package on Lyme Disease and was well aware that it is not very accurately diagnosed because of the poor lab testing methods. He thought that it was something that we should consider. He said that the treatment of both Lyme and Whipple Disease were both similar in that an antibiotic would have to be prescribed to try and kill the bacteria. He said it would most likely be tetracycline (to add to the candida issue-after he said that I realized in horror that I was on tetracycline for years for bad teenage acne!!!UUUGGGHHH I had totally forgotten about that). So some of you Lyme experts...what's your opinion on tetracycline to treat it? I read that Lyme encompasses a few different bacteria so will Tetracycline work on every one of them?

I'll let the lyme girls answer this one, lol.

[CarlaB]

Carla, sounds like you are sleeping a lot too, yes? Have you started taking the artemisinin? Spelling?

Well, I rest a lot with my eyes closed! I don't always sleep ... but I'm tired a lot. Most days I have trouble getting out of bed and it ends up being 10-12 before I get up. Sometimes I eat and then go back to bed. I'm too fatigued to do anything even when I'm not resting.

I'm taking artemisia annua. I was doing pretty well for a few days before I started taking it, and I've been herxing ever since I started.

I'm also going to work out 3-4 times per week. Lately I've been feeling a little better after I leave the gym.

[dlp252]

Dear dlp252,

As far as the mold in your home goes, toxic mold can make you and your whole family terribly sick. If it is bad enough, you may actually have to leave your home. Candida sufferers particularly are vulnerable. I have read things that said toxic mold has even been blamed for lung cancer and ulcers! I sneeze until I nearly pass out while in the shower if I stay in too long because of the mold. It is stuck to the door, and I have tried Brillo pads and everything else to try and get rid of it. Bleach is the best thing to kill it, but if it is too wide spread, some people actually have had to move out of their homes and throw away all of their books, stuffed animals, etc. due to everything being contaminated. You were diagnosed with h. pylori? I underwent the treatment for that before. It is hellacious! All of those antibiotics are so hard on your system! I did not have trouble losing weight until after I did those!

I have some info that could help you. Though I did not end up having it, I did do a lot of research on it.

An outfit called Life Enhancement sells some nice supplements, one of which is Mastic Gum. It has been known to kill h. pylori. Also, broccoli sprouts contain sulfurophane, so if you can eat an ounce of those a day (about 3 broccoli florets) that could destroy it, too. People on here mentioned the nausea with candida. I have that, too. It is awful! I was doing better for a while, but after those antibiotics, I have been almost as sick as before. The reflux is better, but I worry it will get worse. My lower abdomen is so swollen, no matter what I do, I cannot lost much weight. I crave sugar too, but limit my consumption.

Yep, I really should have the walls checked for mold.

Yep, I just finished the PrevPac/Pepto Bismol treatment for h.pylori...heinous, lol. I haven't heard of Mastic Gum, but I have heard the broccoli sprout thing before so I think I'll get some tomorrow if Whole Foods has them. Funny you mentioned not being able to lose weight afterwards...cuz I should be losing lots of weight now that I've cut the carbs way way down, but I'm not, and in fact this morning gained slightly. Right now the doc has me on Prilosec OTC and double doses of probiotics for 30 days. I'm hoping the PrevPac/Pepto thing killed any of those little pylori dudes that were hanging around, cuz I really don't want to take that again, lol.

[CarlaB]

Dear CarlaB,

I called the manufacturer before even taking the Flagyl. It is gluten free. So the candida is the more likely suspect. I cannot say I am totally discounting the possibility of Lyme disease after I saw something on t.v. tonight. The extreme fatigue and feeling strange all over is problematic.

Sincerely,

NoGluGirl

Flagyl is sometimes used for Lyme, so it may have even been causing a herx. I get SICK anytime I disturb the bacteria.

[CarlaB]

Okay so now I have a few more questions...

Question 1: Have any of you heard of this mangosteen juice which I cannot name here for some reason and what do you make of it? Snake oil yes or no?

Sorry, haven't heard of it.

Question 2: I had to take my oldest daughter to see the dr. today and he said that he was going through some of his journals looking for some possible answers for me and he came across something called Whipple (sp.?) Disease. I haven't looked it up yet myself but he thought it may be a possibility as well. Have any of you heard of it?

Yes, I've heard of it. I was chatting with someone in Starbucks one day. He ended up being an infectious disease doctor. I mentioned that I was being tested for Lyme and he mentioned that Lyme is overdiagnosed, that I should Google Whipple's Disease. My symptoms weren't a match for it at all.

Question 3: My dr. told me that he got my package on Lyme Disease and was well aware that it is not very accurately diagnosed because of the poor lab testing methods. He thought that it was something that we should consider. He said that the treatment of both Lyme and Whipple Disease were both similar in that an antibiotic would have to be prescribed to try and kill the bacteria. He said it would most likely be tetracycline (to add to the candida issue-after he said that I realized in horror that I was on tetracycline for years for bad teenage acne!!!UUUGGGHHH I had totally forgotten about that). So some of you Lyme experts...what's your opinion on tetracycline to treat it? I read that Lyme encompasses a few different bacteria so will Tetracycline work on every one of them?

If only it were that simple ... I wouldn't go to anyone but an LLMD for treatment of Lyme Disease. You REALLY, REALLY need someone who knows what they're doing. It's a very complicated disease that can have many coinfections and many things that need to be treated at the same time or in a certain order. You also need to be building your own immune system with supplements and herbs at the same time because you can't kill all the Lyme bacteria ... your body needs to be prepared to go off the antibiotics at some point. Sometimes one antibiotic will be given, then the doc will change it to another in case the bacteria becomes resistant. Also, one of the coinfections is more like malaria than bacteria, so needs an anti-malarial drug. The other thing is, it sounds like your doctor is going to tell you that a 21 day course of anti-biotics will be long enough ... if you were just bitten today, it would have a 70% chance of being long enough, but for chronic Lyme, it won't touch it ... if it was enough, I would be healthy today as I was on doxy four years ago for 21 days.

Question 4: Carla, I don't want to pry but how much did the IgeniX blood panel cost? The doctor said that our medical would not pay to have my blood sent to them because of the cost involved and the mentality that the current testing available to Canadians is good enough so I may just have to buy one myself if he really thinks it could be the problem. I would want to know for sure if that is definitely what is wrong.

It was almost $500, I can't remember the cost. Everyone has to pay for it up front ... I don't know if I'll get reimbursed by my insurance or not ... but knowing for sure was the most important thing for me. I'll most likely be paying out of pocket for most of my medical care for Lyme, too. I just don't see my medical insurance covering it ... but maybe they'll surprise me.

[jerseyangel]

Dang....forgot to set my recorder!!!!

Donna,

They repeat it tonight--it's at 8 eastern, don't know about out there.

It was really good--and to be continued next week, so definately see if you can catch it (or record it) tonight

[dlp252]

Donna,

They repeat it tonight--it's at 8 eastern, don't know about out there.

It was really good--and to be continued next week, so definately see if you can catch it (or record it) tonight

Oh good. I know they USED to repeat it on Friday nights here, but they haven't been lately...I'm hoping that was just over the holiday season! I'll definitely look for it. I love my VCR/DVD player recorder in every way except that I have to hit a little button to actually have it record. The thing is all programmed and everything, but if I forget to hit that little button, it won't record.

[CarlaB]

Patti! You're back! How are you feeling?

[jerseyangel]

Patti! You're back! How are you feeling?

Hi Carla--

Yes, I've been popping on--it's just still uncomfortable to sit in a chair

I have been reading along, and see that you have been really feeling badly. I'm so sorry to hear that--I hope that you begin to regain some energy soon, and start to feel better.

Aren't we a sorry bunch!

[CarlaB]

Hi Carla--

Yes, I've been popping on--it's just still uncomfortable to sit in a chair

I have been reading along, and see that you have been really feeling badly. I'm so sorry to hear that--I hope that you begin to regain some energy soon, and start to feel better.

Aren't we a sorry bunch!

If we weren't such a sorry bunch, we wouldn't have met. Thanks for the good thoughts ... I'm looking at the positive side, these Lyme guys aren't happy about being evicted from my body, so they're protesting leaving. This is a good thing! If I feel good, then I'm not killing enough of them!!!

I'm off to pump iron!!

[AndreaB]

Andrea...I'll be around tomorrow cuz my movie plans got cancelled due to work stuff (not safeway).

My friend wants me to come back from Manteca early on Sunday since we cant go tomorrow. I'll have to try to work something out. I'll have to go home maybe tomorrow. This messes up my plans for starting the Nystatin....but I gotta have "somewhat" of a life too.

I'm sorry Rachel.

Do you have any thoughts on when you'll start Nystatin if you come in early Sunday?

I'm going to really be working on being a good girl and severly limiting my time on here. I'll always be popping on to read though. Got a lot of things to try and get done today before Sabbath starts.

How do you do that multiple quote thing from multiple people. Is it time consuming to do?

Claire,

To do multiple quotes hit "quote" instead of reply and then post you're responses in between the various people quotes. If you have a person you want to break up into different quotes then once you are in the reply page you can copy the top line {quote name......} and paste it above the part you want to separate. Then you would need to add a {/quote} at the end of the section on top of that. Use these brackets though [].

That's probably as clear as mud right.

[Rachel--24]

It was almost $500, I can't remember the cost. Everyone has to pay for it up front ... I don't know if I'll get reimbursed by my insurance or not ... but knowing for sure was the most important thing for me. I'll most likely be paying out of pocket for most of my medical care for Lyme, too. I just don't see my medical insurance covering it ... but maybe they'll surprise me.

Carla....my IgeniX tests were alot cheaper than that.

I had the Western Blots and they were $95 each...my insurance paid half so for both Western Blots I paid only $95. The IFA test was complimentary when you get the WB's...so that was a "bonus".

My co-infections tests were more....around $400....but insurance pays half. I'm still waiting for that check.

[CarlaB]

Carla....my IgeniX tests were alot cheaper than that.

I had the Western Blots and they were $95 each...my insurance paid half so for both Western Blots I paid only $95. The IFA test was complimentary when you get the WB's...so that was a "bonus".

My co-infections tests were more....around $400....but insurance pays half. I'm still waiting for that check.

My co-infections was $650 and I'm almost certain my complete panel was $450. It was definately more than you paid!! I wonder why??? Didn't you physically go to Igenex? Maybe that's the difference.

[Rachel--24]

Do you have any thoughts on when you'll start Nystatin if you come in early Sunday?

I think I'm gonna just go ahead and start taking it tonight. If I get alot of die-off I'll just cancel the plans and stay home till Monday morning. My Dr. only wants me to take half a capsule to start with to hopefully avoidalot of die-off....so maybe I wont even notice anything.

[Rachel--24]

My co-infections was $650 and I'm almost certain my complete panel was $450. It was definately more than you paid!! I wonder why???

What was in your complete panel?? My Dr. just ordered the Western Blots....no other tests to start with.

At first one of the nurses told me the co-infections was $650 but it turned out to be cheaper. I think maybe it was around $460.....cant remember the exact price. I had asked why the nurse originally quoted me $650?? They said she was looking at the wrong panel and the panel that costs $650 has everything...the co-infections + the WB's. They said I didnt need that panel since I already had the WB's. So anyways....I was happy cuz it was cheaper than I'd planned.

[Rachel--24]

Yes, I've been popping on--it's just still uncomfortable to sit in a chair

Hi Patti!!!

I've seen you popping on here and there but not posting. I was hoping you were feeling ok but didnt wanna bother you with questions. Not yet anyway.

Anyways...hope you're getting lots of rest and that hubby is taking good care of you. And remember.....NO vacuuming!

[LL04]

I dont know if its true but I've heard this lots of times.....that its not good to live in too much of a sterile environment w/out allowing your immune system to be exposed to things. Exposure to normal germs keeps the immune system functioning normally. So I guess it could "malfunction" if it goes for long periods w/out having anything to do.

I have heard this many times over the years and of course I don't know that's it's true or not, however, I make sure that any types of soaps etc...that I buy are not antibacterial. One interesting thing I have been able to observe as the mother of four kids is this: my oldest daughter has always put everything in her mouth, pens, pencils, her shirt sleeves, her hair, toys, dirt, you name it, she puts it in her mouth. None of the others did or do this (apart from what would be normal for babies to do). Out of all the them she is the one who is most likely to get a fever, cold, infection or sickness. She's had hand and mouth three times-although that wouldn't be surprising would it??? But that aside, if there is a cold going around, she gets it. (As I speak now she is home with a fever but all the others are fine and at school and I really don't expect they'll get sick either.) Now I know that several factors may contribute to this. I breast fed all of my kids so that's not an issue. She did not get sick as a baby even once, whereas the others all had bouts of one thing or other as babies. My oldest was sick almost his entire first year, he had croup 4 times alone, not to mention Roseola as well and now he is never sick! So maybe she didn't develop the necessary antibodies early in her life to be able to fight them off when they appear now? I don't know, I just thought it was interesting that it would seem logical that she probably ingests more germs than the others because of her habit and she definitely is more sick than the others so perhaps for her antibacterial soaps would be appropriate??!!