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Omg...i Might Be On To Something


Rachel--24

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dlp252 Apprentice
just nerdily (can that be a word?)

Doesn't matter if it in the real world but in Rachelville it now exists, lol. :lol:


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miamia Rookie

Laura-

so sorry to hear you are not feeling well. But it does sound like you are finding some things out which is really good!!

Rachel-

It sounds like your doctor and mine are on the same page about alot of things thats why I went on the diflucan. I hope the nyastatin helps you!! I have so much other stuff to reply to all you have been posting but have just been crazy.

Andrea-

Thats so funny you give your kids pear juice. I kow I shoulden't have nay juice becasue of the candida but I drink pear juice. I only drink one brand ceres- its just the pure juice and it is like the only thing I don't react to besides water.

Today is my 4th antibiotic shot I sent out my urine test on monday so hpefully igenix got it yesturday and now again I ma waiting !!I hate watiing.

Ok I have to run to get my shot but I will pst more later

Miamia

dlp252 Apprentice
Hi Everyone. I wish I felt good enough to read everything I missed and to catch up. What's new with everyone, any new discoveries or happenings?

I hope everyone is feeling and doing well. How are all of you? Have you stopped herxing Carla?

I've been herxing for about 4 days now and feel horrible. Does anyone ever vomit when they are herxing? Icky questions, I know. But sometimes I feel like it's going to happen. I also have this weird thing where I get these headaches and my eye twitches REALLY bad. It's more like an eye spasm. LoL. It's the weirdest thing ever. Anyone ever get that?

Sorry you're still feeling bad. I get the eye thing...they don't really twitch so much when I'm herxing (they do at other times though), but they hurt in their sockets. I also often feel nauseated, which is why I thought I've been herxing for the last 2 days or so.

dlp252 Apprentice
Even as devoted as I was/am in the gym, I still had some ... not a lot, but enough to bother me.

See, me too. NO matter how thin I've gotten, and at my thinnest I was doing hour long intense cardio sessions and lots of weight lifting, I always had some cellulite! :angry: I have this fat layer that just won't go away...now this all has me thinking, lol.

dlp252 Apprentice
Donna....yikes about the mold in your bathroom. :blink:

I'm so terrified of mold right now I keep worrying about stuff like that. :ph34r:

Not good.....the Dr. said FEAR is not good. :(

Yes, but I had a leak inside the walls of my bathroom for years which the homeowner's association couldn't seem to find and fix...they finally did, but I'm sure there must be mold in there. I probably should have had the association check for it when all this happened, but it's been too long ago now.

dlp252 Apprentice
What is herxing? Makes me think of hexing. LOL.

It's short for Herxeimer(sp??)...it's basically experiencing symptoms of "die-off". For example, killing off some bad bacteria would cause them to emit toxins, which in turn would make you feel worse for a short time. Some die off symptoms that I've had is a general achiness in joints and muscles, sore eye sockets, headaches, feeling of nausea, diarrhea...among many others.

dlp252 Apprentice
Today is my 4th antibiotic shot I sent out my urine test on monday so hpefully igenix got it yesturday and now again I ma waiting !!I hate watiing.

Ok I have to run to get my shot but I will pst more later

Miamia

Mia! It sounds like maybe you are tolerating teh shots well! That's great!


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dlp252 Apprentice

Okay, I came into work today and there was a huge gorilla sitting at my workstation typing away, lol. :lol:

Yes a gorilla. Fortunately it is stuffed. :lol:

Not sure who put it there, and whether or not it was a personal statement for me :lol: but I've now moved him so that he is perched at our pass through window...he can stare at the rest of the office for a while. :lol: Tomorrow if he's still here, he might just hang off the cubicle divider. :lol:

dlp252 Apprentice

:wub:

Oh, and I just wanted to say thank you to everyone who takes the time to do masses of research and then post it here. I feel badly sometimes not contributing in that way, so I just wanted to make sure that EVERYONE knows how much I appreciate it.

:wub:

dlp252 Apprentice

OH, and Hi Laura, I'm so sorry you're feeling bad again! I was so hoping you were past that!

CarlaB Enthusiast
What is a refridgerator reading?? :unsure:

It's a paper that's supposed to hang on the refrigerator all week and parents are supposed to sign it after they read for 20 minutes. We never saw one ALL YEAR! He started forging from the beginning, so the teacher never knew what our initials looked like. The ones he forged looked very juvenile and he would write that he read about 200-300 minutes per night!! The teacher is a first year teacher and admitted that in hindsight he should have suspected something .... :unsure::lol:

The prinicipal had a talk with him first thing this morning and tried to put some fear in him ... I was glad to see it was the assistant principal (a man) instead of the principal (a woman). Call me old-fashioned, but I think a man would be scarier to a 10 year old boy! He's in suspension in a cubicle outside the principal's office all day. :P

I actually saw the first spark of honesty in him last night when I had my "discussion" with him. I think he's realizing now how hard it is to carry on with lying all the time.

CarlaB Enthusiast
EDIT:

Oh yeah....I never posted on LymeNet but if I do you'll know its me....my name is Rachel--24. :P

I haven't either. I'll probably use my yahoo name -- sixgoofykids. :P I haven't even registered yet.

CarlaB Enthusiast
The Lyme arent gonna continue having their way.....and neither is Jack!!! :P

:lol::lol::lol: I'm too tough for either one of them to have their way!!! Now I've got to keep saying "Die, suckers, die" enough to build up the energy to crawl out of bed and get to the gym!!

CarlaB Enthusiast
See, me too. NO matter how thin I've gotten, and at my thinnest I was doing hour long intense cardio sessions and lots of weight lifting, I always had some cellulite! :angry: I have this fat layer that just won't go away...now this all has me thinking, lol.

That was what happened with me, so I started reading about it. I know I was getting my body fat % pretty low, but the cellulite wasn't budging and with the muscle it was becoming more noticeable. That's when I read about the toxins ... the thing that didn't make sense was that I had always eaten a detox type diet. Now it makes sense though ... my diet kept me from getting sick from the Lyme, but my body still had too many toxins to deal with. Fat is an easy place to store them.

I've read that dancers get "hard" cellulite instead of "soft" cellulite that overweight people get. It's apparently in the fat that naturally surrounds the muscle ... that's the stuff I'm talking about. But when I was on the Fit for Life diet very strictly, I didn't have any of it ... or maybe I just wasn't in good enough shape to see it.

CarlaB Enthusiast
Then, once I went gluten free, I felt much better. Only after doing a course of Flagyl did the misery return. There is no way that is a coincidence.

Why do you think this was? Because of gluten in the Flagyl or because of candida?

diamondheart Newbie

Hi Everyone! I had to skip a few pages of everyones posts, but I think I got the gist of what's going on. Donna, Peace, and Laura, I hope you are all feeling better!

In my last episode of "The BioSET Files", Dr. F cleared me for gluten (again) and dairy (1st time). Last night's BioSET episode found that I did not clear for the gluten and I did clear for the dairy :o ! So, it appears that gluten is my core allergy, which is what I suspected. Gluten was the first thing my chiropractor told me I reacted to 7 years ago, and he tested all the other stuff that I developed intolerences to over the years. Dr. F thought dairy was going to be my core allergy. I had a fantasy of being a graduate from this board, but you're not going to be getting rid of me anytime soon, it appears :lol: . I also had fantasies of drinking microbrews again, but I guess I'm just going to have to learn to enjoy wine more :rolleyes: .

So, we are taking a break on the clearings and just dealing with the healing of my gut for now. I felt horrible two mornings ago - flashbacks of how badly I felt this past summer. I'm now back on the Huang Lian Su herbs, probably because the bacterial dysbiosis is back. One step forward, two steps back...but I think it's really more like two steps forward, one back for me :D . AND, I'm now taking double the probiotics AND I have the prebiotics (FOS)/immunoglobins. Laura, I suspect I may be IgA deficient too, as my secretory IgA as tested through stool tests were really low. This Probioplex from Metagenics has immunoglobins, and I think that really helps my gut.

Now that I can have dairy again, I think I'm going to try making homemade yogurt via the SCD method. I don't plan on going nuts on dairy, cuz I think processed dairy is generally bad for you AND I don't need any extra estrogen or progesterone that dairy has (no, they never list this in the ingredients, but it's there). However, I do think that I'll be sampling cheese as a treat on occassion :D.

Dr. F and I also discussed what foods I have been adding back that may have contributed to my problems the other morning. When I mentioned corn chips, he tested me for corn syrup. Corn syrup is a loser, but the other corn products are not. Dr. F said that the highly concentrated fructose in corn syrup is the problem for some people. He said he doesn't usually test people for it as it's rare, so I guess I'm just special :P . I said, but what about fruit? He said that the fructose in fruit is usually not a problem. He said the fructose in corn syrup is different than the fructose in fruit :huh: , but that he didn't understand it all. I said my DH is a chemist, so I'll ask him.

So I got home and asked Dr. DH (yeah, he has a Ph.D. in chemistry) about the fructose thing, and he said that fructose is fructose, so that's not the problem. This is the theory that we came up with, and it sounds pretty good to me ;) . Corn has starches, which are monosaccarides, or long chains of sugars. When they make corn syrup, they end up fragmenting these monosaccarides into shorter chains of sugars called oligosaccarides. Fructose is a simple sugar, and not a chain of sugar molecules. Anyways, we hypothesize that the oligosaccarides are manufactured fragments of larger longer chains of sugars, and therefore are not in a naturally occuring form, hence the reason why some people do not tolerate them.

Dr. F gave me this book to read called "The Self-Help Way to Treat Colitis and other IBS Conditions" by De Lamar Gibbons, M.D. He said that not everything is accurrate in the book, and I agree, but that he thinks Dr. Gibbons is right on about the problems with corn syrup. I tested ok to cornstarch and corn kernals. Corn syrup, of course, is in everything - soda, ice cream, breakfast cereals, and all sorts of other processed foods. It's even in M&Ms :angry: . No more M&Ms for me.

Dr. F also told me to be careful with corn. He said it's AC/DC with people who don't tolerate gluten. I kept asking him what that meant, but we got distracted by the whole corn syrup thing. Anyways, I think I'll stay away from processed corn for now, and maybe just see how I do with fresh corn. I really don't miss corn products anyways.

Until the next episode of the BioSET Files...

Claire

CarlaB Enthusiast

-

dlp252 Apprentice

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.

AndreaB Contributor
Okay, I came into work today and there was a huge gorilla sitting at my workstation typing away, lol. :lol:

Yes a gorilla. Fortunately it is stuffed. :lol:

:lol::lol:

Sounds like someone having fun or giving you a different gift. :)

:wub:

Oh, and I just wanted to say thank you to everyone who takes the time to do masses of research and then post it here. I feel badly sometimes not contributing in that way, so I just wanted to make sure that EVERYONE knows how much I appreciate it.

:wub:

And I want to thank you for always responding to everyone. I'm cutting back my time on here again and appreciate your thoughtfulness. :):wub:

The prinicipal had a talk with him first thing this morning and tried to put some fear in him ... I was glad to see it was the assistant principal (a man) instead of the principal (a woman). Call me old-fashioned, but I think a man would be scarier to a 10 year old boy! He's in suspension in a cubicle outside the principal's office all day. :P

I actually saw the first spark of honesty in him last night when I had my "discussion" with him. I think he's realizing now how hard it is to carry on with lying all the time.

I would think that a teacher would suspect 200-300 minutes. I don't know any children that will sit down for that long on a school night and read (although there may be some).

I'm also glad it was the assistant principal. Men have a certain authority and that was right in this situation.

Claire,

Thanks for the update on your Bioset treatments.

Mia,

So good to hear from you! :)

Looking forward to more updates but it's nice to "see" you.

dlp252 Apprentice
Sounds like someone having fun or giving you a different gift. :)

Still don't know who put it here, lol. My co-worker comes in at 1:00 so maybe she can shed some light. One of the attorneys who works late said it wasn't here last night though... :lol:

Rachel--24 Collaborator
I would think that a teacher would suspect 200-300 minutes. I don't know any children that will sit down for that long on a school night and read (although there may be some).

Andrea...I was "nerdily" like that. :lol:

It was the most exciting thing when I got to order books from the book club. My mom always let me get whatever books I wanted...I would have read 300 minutes easy. :D

I guess I'm still nerdily...hence all the scientificness. :P

Rachel--24 Collaborator
Why do you think this was? Because of gluten in the Flagyl or because of candida?

Theres no gluten in Flagyl.....I think she was saying that it caused her candida problem.

Rachel--24 Collaborator
Only after doing a course of Flagyl did the misery return.

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. <_<

Rachel--24 Collaborator
Rachel-

It sounds like your doctor and mine are on the same page about alot of things thats why I went on the diflucan. I hope the nyastatin helps you!!

Thanks Miamia...when will you get your urine test results?? Waiting sucks. :(

Are you taking anything for candida now?? The candida will be there until we get better from the Lyme.....or whatever else is contributing to weakening our immune systems and making us toxic. You gotta keep treating it or it will come right back. I'm going to be on the nystatin indefinately....plus other natural anti-fungals. I dont want any extra stress on my liver so I'm not gonna take diflucin. I never got a good response from taking it in the past.

If you wanna get back on antifungals....nystatin is very safe and can be taken long-term.

Heres some info on both....

Nystatin

Nystatin comes from a soil-based organism that is concentrated and works by directly killing the yeast. It is safe and effective and can be used with pregnant mothers and infants. 1 pill (500,000 units) taken three times a day is usually the recommended dosage for an adult. If the powder, Nilstat, is used a 1/8th tsp. is taken 3 times a day orally either directly on the tongue or mixed with a little water. Work up to three times daily to manage die-off symtpoms. The difference with the powder is that it does not contain any dye and kills yeast living in the mouth and esophagus as well in the gastrointestinal tract.

Nystatin is not well absorbed into the bloodstream but with prolonged use it can get into the blood, helping those with autoimmune diseases. The problem is that most doctors prescribe Nystatin for less than 6 weeks. Better results show with a usage of three months or longer. In my case of MS I took Nystatin for two years. If you have a mild case of Candidiasis 3 or 4 months of Nystatin is usually sufficient.

Diflucan

Diflucan (fluconazole), an antifungal synthetic drug, is found to be effective against systemic (in the blood) Candida overgrowth. It is ten times stronger than Nystatin, but it also more toxic to the liver. If Diflucan is used longer than a couple of weeks have your doctor test and monitor your liver enzymes. When you have symptoms of depression or any mental imbalance, Diflucan can give you a jump-start on eradicating the fungus. I recommend taking one Diflucan pill (4 pills total), every other day for the first week and then switching to Nystatin because it is safer and can be monitored better. Unlike Diflucan, Nystatin permeates the areas of the GI tract where yeast overgrowth usually originates and it is essential to tackle both the blood and the gut in a chronic or severe case.

AndreaB Contributor
Andrea...I was "nerdily" like that. :lol:

It was the most exciting thing when I got to order books from the book club. My mom always let me get whatever books I wanted...I would have read 300 minutes easy. :D

I guess I'm still nerdily...hence all the scientificness. :P

I loved to read to. I just figured children today were more into games/tv.

I don't remember if I read that much at 10 though. I know I'd read for a couple hours easily, just don't know about 4 hours.

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      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
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