Omg...i Might Be On To Something

[confusedks]

Anyone ever had Quest lose blood work!? We are on a hunt and I don't know what I'm going to do if they "lost" my 7 stinkin' tubes of blood! They are claiming they have NO record of me being there! AHHHH!

[dlp252]

Gosh I hate Quest labs, lol. Maybe they got the name wrong.

I wrote Dr E about whether she thinks gluten would test as a stressor even if it hadn't been eaten for awhile, if the celiac had actually been triggered. Don't really know that she would be able to answer that but I thought I'd try.

Yeah, a couple of my doctors think that NO ONE should eat gluten, lol.

[AndreaB]

I found this article Andrea and I thought it was a really good read, it makes a strong case about staying totally gluten-free:

Open Original Shared Link

Thanks Julie! That was a good article. We'll go back to strict gluten free. There is one cereal I bought (Whole Foods/Wild Oats brand) that doesn't list anything with gluten but doesn't say gluten free either so I'm assuming it would just be a cc issue.

Now I'll need to have soy oil tested when we go up to see Dr E to see if they can have cereals that use soy oil or not.

Kassandra,

I don't know what to tell you.......That's the pits though!

[Green12]

We are on a hunt and I don't know what I'm going to do if they "lost" my 7 stinkin' tubes of blood! They are claiming they have NO record of me being there! AHHHH!

You are kidding?!?!

OMgosh you have not had good luck from the start with this lab

I hope you get it all straightened out.

Yeah, a couple of my doctors think that NO ONE should eat gluten, lol.

My Dr is one of them He thinks gluten causes too many problems in the body, gut issues and neurological, outside of celiac or a gluten intolerance and even in healthy well functioning individuals.

What stood out for me in that article Andrea was the part about gliadin. I was reminded of a conversation we had 2 years ago recently when I went back to read the first 100 pages of this thread, does anyone recall gluten's evil twin gliadin??

[tabasco32]

Anyone ever had Quest lose blood work!? We are on a hunt and I don't know what I'm going to do if they "lost" my 7 stinkin' tubes of blood! They are claiming they have NO record of me being there! AHHHH!

I'm sorry Kassandra. I don't know. My mom draws blood from patients all day and she said that Quest Diagnostics is the worst company. I don't know if they use them anymore. Sorry. I hope they find your blood.

[AndreaB]

What stood out for me in that article Andrea was the part about gliadin. I was reminded of a conversation we had 2 years ago recently when I went back to read the first 100 pages of this thread, does anyone recall gluten's evil twin gliadin??

I remember that. I was wondering how we'd do on the alternative grains. I vary between amaranth, quinoa, garbanzo or garfava for bread mostly. Rice is the prime one and sorghum doesn't do well with hubby so I don't use that unless I warn him not to have any. I noticed that amaranth and quinoa were on that gliadin list. I don't have bread that often and neither does hubby. It's mostly the kids. I suppose I'd better plan on having them tested for the various gliadin foods. They didn't come up on their ELISA though, whereas it was elevated on mine.

I mostly stick to rice and don't usually do well with a lot of cereals unless I have some protein with them or eat very little.

I've been trying to post a blog on MS but it won't let me. Last time I tried was an hour or so ago though.

[ShadowSwallow]

Kassandra,

That stinks!

Donna,

I'm glad you're doing a bit better.

Jin,

Sorry about your experience on LymeChat. It's glad to see you around again, though.

Everyone,

I've had to start using a topical steroid for my skin... and it's helped. I'm glad the rash is gone, but that's very frustrating.

Birdy

[AndreaB]

I've had to start using a topical steroid for my skin... and it's helped. I'm glad the rash is gone, but that's very frustrating.

That is frustrating. I'm sorry.

[confusedks]

Gosh I hate Quest labs, lol. Maybe they got the name wrong.

We have tried different spellings and different everything! They looked up all of the orders Dr H had done, by his account number, and still nothing came up!

You are kidding?!?!

OMgosh you have not had good luck from the start with this lab

I hope you get it all straightened out.

Yea, it has been a bad experience from the beginning

I'm sorry Kassandra. I don't know. My mom draws blood from patients all day and she said that Quest Diagnostics is the worst company. I don't know if they use them anymore. Sorry. I hope they find your blood.

They are horrible! I have been on the phone with them all day. They are all telling me different stories and I want to kill them! Oh, yea, not to mention they ran the $1500 bill through insurance!!!! :angry:

[confusedks]

Update on my Quest (haha, get it? ):

They are filing a "problem sheet" and they will investigate what happened to my results. I should hear back from them tomorrow...I hope! I literally spent all day on the phone with them and Dr H's office, except for my acupuncture appointment.

SO, when I do finally get the results, I will post them here because I would love all of your opinions!

[mftnchn]

We probably have to stick with gas as well for now.

Jin and April,

What I did for my trial period was in the summer when I didn't need the furnace turned on, I got a little electric hot plate, used microwave and crock pot, and made do.

The water heater would be harder, but maybe you could ventilate the area, and do a little research about how much that gas is an issue. I think the gas oven and stove is a much bigger issue from what I remember in my research because the others are often in areas where you are not breathing in the fumes so directly.

Sherry

[mftnchn]

Sherry,

Didn't you say you take 80mg of Nattokinase? My bottle only lists FU, Fibrin Units. I don't know how that compares. I take 1000 FU's at night.

April

I am not sure what mine is because I am away from home and didn't bring my bottle with me; if you remind me I'll check when I get home at the end of the month. I'll be away until about the 27th or so.

Sherry

[mftnchn]

Thanks Jin for your kind words. I appreciate what everyone here contributes. I don't do as well at responding to everyone, but read along and follow with how everyone is doing and try to pipe in when I can.

Right now I am busy on one of my trips, in meetings the last two days, a guest teacher arriving tomorrow. I haven't felt well since I got here. Maybe because I couldn't bring my RO filter??? We don't have a car, otherwise we could bring it. I have to carry everything on the bus, train, or plane.

I took my allergy shot that has the tree mixture again today, and STILL reacted. It is down 7 doses from when I first started reacting and is the lowest possible dose with what I currently have for serums. I'll write my allergist again.

Donna, I keep hoping things will improve. I think Julie asked a good question about the changes in treatment. I was thinking that your flu symptoms sounded like you had pneumonia, maybe walking pneumonia?? Seems like that is mycoplasma pneumonia...

Sherry

[mftnchn]

Kassandra, that is really horrible--if they lose your results they better refund plus some extra for your trouble, gas, etc.!

[CarlaB]

Hi all! I've been reading.

Kassandra, sorry about the ongoing quest for answers from Quest.

I'm feeling a little better after my herx. I had a deep tissue massage yesterday .... it stirred up stuff, so I was tired after that. But I wouldn't say it caused a herx, so that's improvement.

I'm not on Humaworm, but have seen weird things lately, if you know what I mean. I have no idea why I'm eliminating "stuff" again. I guess it's my body doing it on it's own this time? Is that a good sign?

[dlp252]

Morning all...another old symptom has returned. GOOPY EYE feeling, lol. My left eye is still irritated and the right one is now also feeling goopy, lol. Stupid body!

Donna, I keep hoping things will improve. I think Julie asked a good question about the changes in treatment. I was thinking that your flu symptoms sounded like you had pneumonia, maybe walking pneumonia?? Seems like that is mycoplasma pneumonia...

Hum, okay, must go google mycoplasma pneumonia. My doctor said my lungs sounded clear so she said I didn't have pneumonia or bronchitis at that time, but I definitely had a fever when I went to see her.

Is that a good sign?

Well, it's a sign, lol...

[NoGluGirl]

Dear Donna,

You are more than welcome for the compliments! It is such wonderful news to hear your bills are paid off! That must be a great feeling! One day, I hope to know what that is like. Julie is right, you really must pace yourself while redoing your condo. Overdoing it is detrimental to your health.

Work being busy likely does not help any. I have difficulty concentrating more than I used to. Taking breaks every so often helps. You can refocus more. A study done recently actually reported that reading information in small sections assists remembering what you read as well as concentration.

I am glad you did not have pneumonia. It is miserable! The flu is no better, though. Most people who got that bug had it for two weeks. I hope your shoulder gets better soon. Coughs can really mess up your whole body!

Those new supplements may have aggravated the situation. You never know. When your system is already sensitive, any small thing can make it go into overdrive. I am not sure about the goopy eyes, though. I get those all the time. If you have allergies, it could be a protein from that. This builds up on my contacts, and makes them milky looking, and they burn.

Dear Patti,

You are so welcome for the word hug! I especially needed the support after today. Last night, I got online to read an e-mail from that person I spoke of earlier who told me to kill my dog. It was very hurtful, and know someone from this thread must have told them about it. I never mentioned the name of the person, or even their sex. How could they have found out my feelings unless they are someone from the Lyme chat and here?

First, I will tell you what occurred. In chat the other night, someone suggested I go to therapy to deal with the parental issues. I told them I would not go, because it was like putting salt on old wounds. Also, I hated therapy because it seemed they always blamed you for whatever it was, and I felt it was a waste of time. Right then, this person blurted out if I hated therapists, that I hate this other chat member, because they are a therapist.

What kind of person says something like that? They are bound to know they are going to start a fire. I explained that all of the experiences I had previously were negative, and preferred to not experience those again. This is when the person who is a therapist begins telling me I am a selfish, lazy brat that thinks they are entitle to things. Another member joined in the bashing, although since has apologized.

I thought I was on good terms with this person here, as we had a religious conversation earlier that evening. People misconstrued what I said, and I worried this person thought I was patronizing them and their faith, which I would never intentionally do. I asked the person before they left the chat if they were angry with me and if I had offended them. They said no, and so I thought we were alright. Later, the person contacted me and apologized saying they were just in a bad mood. We all appeared okay with each other.

Now, I get this e-mail from the person who says they do not have a reputation for animal cruelty. During the chat, this individual told how they tossed a dozen hamsters out the window into the bushes because they bit them. That is animal cruelty! Plus, this person told me to kill our dog! He does mess on everything, but it is still animal cruelty!

The e-mail calls me a liar, and many other hurtful things are said. I was in tears reading it. I am now sick with a sore throat and headache, which I do believe have to do with my wisdom teeth. They also are likely because my father has a cold, and I could be catching this. The whole thing makes me feel sick. I am heartbroken and feel I can no longer trust anyone. I am not even safe here anymore.

I am very careful how I word things. Anyone knows I avoid confrontation whenever possible. No one on here could ever say I instigate or ever even got into a fight with anyone on here. Arguments are something I avoid, because I physically cannot take them. When I get in an argument, I will be depressed for days afterward.

So now, I think I may not even be able to come on here anymore. Nothing I say is safe. You all are my confidantes. A lot of people tend to simplify the situation I am in, and do not understand how difficult it is to get assistance in our state. I have made efforts to improve the situation, and do not just sit around and whine. I just do not know what to do.

Meanwhile, I am glad to hear your sensitivities have gotten better. Scented anything is terrible for me.

Gas may be an issue for us. Dad's smoking is not helpful, either. How he stands those cancer sticks, I will never know!

Dear Birdy,

I really missed you guys. Lyme chat is awful. I will never go back! It is such a painful experience.

I can hardly describe it, but would not recommend others go there.

Sorry you had to use steroid cream to get rid of that rash. Rashes are really difficult to deal with.

My eczema is bad, but do not know what to do about it. There have been some articles on tea tree oil. It might be worth a shot.

Dear Kassandra,

Those idiots at the lab lost your blood work?! How the heck do you lose seven vials of blood? Did a vampire rob them or something? Quest does seem to have a lot of strikes against it. Remind me not to go with them.

Dear Julie,

Thank you for the gluten-free diet article! That was good to have. All the more reason not to eat gluten. It is bad stuff, no matter how you slice it. Even if I ever was able to go back to eating it, I am not sure I would do it often. Gluten is supposed to be taxing on the nervous system in everyone.

Lyme chat is something that is best avoided for anyone who does not need disharmony in their life.

You are very deserving of the kind words. So many here have been true friends of mine for quite a while.

They know me here. I wish the people on Lyme chat understood me the way you all do.

Do not worry. I am off the peanut butter! I need to get some almond butter at the health food store. It is expensive, but making it might be more so. Nuts are pricey here. I hope it will keep my blood sugar as steady as the peanut butter.

Dart was alright after I rocky-byed him. He likes that. When he has a seizure, it calms him down some if I hold him under one arm and support him with the other, and sway back and forth. Mom and Dad are convinced it was damage from the flea and tick stuff. However, there is still a possibility it is his liver, gluten, or Lyme. The thing is, they are so microfocused, they refuse to acknowledge and explore these other possible causes.

Dear Lisa,

You are awesome! I just love how you put a positive spin on things. The kind words certainly convey how I feel. I appreciate it more than you could know, especially now. Everything is crashing down.

Hershey bars could be causing the C. I did not have trouble with them that I know of. However, they do have additives like vanillin. I noticed that Rachel had posted that as one of the phenol/salicylate

problem foods. Maybe there is a connection?

Dad loves his pens! The trouble is, he buys books on them all the time and pens. We all have medications and stuff we need, and he is not always practical. This is often to my mother and my detriment. There is stress because of this that is unnecessary. Dad should get to treat himself to something sometimes, but he chews my mother out over a lipstick, or complains about the cost of my doctor or medication and food.

Dear Andrea,

Micah sounds very sensitive to gluten. It is difficult finding the culprit at times. Considering his genes, it is a good possibility a strict gluten-free diet is best. I am trying to find something on a test about whether or not Celiac genes are activated. I must need to be more specific.

Dear Paula,

That flu is everywhere lately! I hope I am not getting it. It is hard to say. Yesterday, I woke up with a sore throat that progressively got worse. Then, I developed a headache. My wisdom teeth could be what it is, though. I took some Amoxillin so maybe it will help if that is the trouble.

Concentration is an issue for me as well. It is like ADHD. One second, you are with it, the next you are thinking about something totally different. You just cannot sit still. I have always been like that, but it just seems worse than it used to be. Being sick definitely does not help.

We had a neti pot, but we never used it. Mom has no idea where it went. She got it at a party one night. Those things should actually help you avoid the flu, because they actually rinse out the germs from your nose. When it is in the air, it is so easy to breathe it in. Hopefully, you will feel better soon!

Dear Sherry,

You are so helpful and gracious! Your input always is terrific. Do not sell yourself short! You contribute quite a bit, even if you post a short note. I am not near as good at summing things up as you are!

Walking pneumonia is awful! My grandparents had it some years back, and the emergency room doctors just ignored them. They could have died, and there were no other patients in there! Thank goodness they were alright. I have had pneumonia a couple of times, and it was not fun!

I have no idea about our hot water heater. It could be gas, I am not sure. The oven is, so that is an issue. Remember I share a kitchen, and Mom and Dad probably will not change. All I know is, I tend to get dizzy when standing over the burner. Sometimes if food spills and burns in the oven, that smell also makes me queasy and dizzy.

It is terrible you have not felt well, lately. Not being able to bring your RO water filter is a possible cause. Keep us posted! Are you still taking charcoal? That might help bind some toxins you are taking in.

I would like to know about the Nattokinase you take, too. Does soy sauce have natto in it? It does not seem to bother me. Vinegar gives me terrible reflux, though. These food reactions get so confusing and perplexing.

Dear Carla,

Your massage sounded nice! What great news that it did not cause a herx! That is improvement!

Usually, you would have reacted. A road to health is being paved!

Seeing things in your stool is odd. Since you are not taking the Humaworm, maybe you are releasing those things on your own. It is possible. Have you changed supplements recently? One of those might be an anti-parasitic on top of Lyme, Bart, or Babs killer. Speaking of, I wonder if tom ever got his Humaworm and how he is doing with it?

Sincerely,

Jin

[jerseyangel]

Gosh Jin,

I feel very badly for what happened. It sounds very hurtful, and I'm so sorry that it happened.

I'm not familiar with LN or their chat room, I know that here, anyone can read this or any other thread. Nothing we say here is "just among friends"

If you get any more disturbing PM's, let me or Scott know--the board rules apply to PM's, too.

Hope you get over your cold quickly--get lots of rest and liquids It's hard to not let what others say bother us, but try not to give them that power--you know what's in your heart

[CarlaB]

I'm not familiar with LN or their chat room, I know that here, anyone can read this or any other thread. Nothing we say here is "just among friends"

The chat is not affiliated with LN, though many of its members go there.

Jin, something else to remember is that you have mentioned this thread on chat .... it might not have been someone here who talked about you .... the offending person may have read it for themselves.

[Guest tamedandfoxed]

Man I am way behind!!

Jin,

Glad to see you back here! Sorry the Lyme people were so cruel! That is unnecessary and upsetting..It sounds like a frickin AOL chat or something! absurd.

and GOD! I scanned what you said about ADHD and just thought... yeah.. I started on drugs for it when i was in 5th grade. Ritalin, Adderall, all this crazy stuff. I too Stratterra for the past 4 years but i even stopped taking that about 4 months ago because I wanted to limit that stuff in my system that was unnecessary. It's hard though. I struggle with being resentful toward my parents / mostly Doctors for putting me on it. I know my parents were just trying to help me in school But that stuff completely changes your brain chemistry. And for how many years?? I wonder about this alot.

Peanut Butter is my Achilles heal as well... I absolutely love the Marathon with Honey brand. It is so good. I think it's only 6g of sugar but still i shouldn't eat it probably because of the mold. but i do at least once a week. And Nutella. The kid i babysit for had it in his cupboard. I ate a spoonful.. or two.. i don't even know if it's gluten-free, but it looked okay! If you get hooked on Almond Butter, just note that for me, at least, it caused more mucus than PB did. Weird i know. I think it's the texture change. who knows.

I hope Dart is okay now!

Kassandra,

SERIOUSLY??? THey LOST SEVEN TUBES OF BLOOD?? WHO DOES THAT??? that is ridiculous. And they are trying to charge you $1500 for tubes of blood they don't even HAVE?? That's like some sort of ghost fraud... I am so sorry. No excuse for such things happening. I agree, they should refund and retest for FREE.

I'm sorry your colonic was so painful! That sounds Awful! I am considering having one, since the Iron and who knows what else has made me really backed up--plus it'd be nice to just start fresh and get everything out of there. Is it supposed to help with Candida??

Update:

My Naturopathhad a death in the family so my appt for tomorrow has to be reschedule for ANOTHER two weeks out. It's hard because I'm sorry someone died, but my first appt with her was messed up because they told me it was going to be free! Now this? Come on. It's not fair. I want free supplements.

Went to the Dentist today and learned something new, you all might already know this: We did a pre-rinse with Listerine, I asked why and she said that because they clean below the gum-line, lots of bacteria is stirred up and gets into the bloodstream. I was like, "GOOD TO KNOW AND THANKS!" cuz who needs that?? gross. Talked to Tom (dentist), who I've seen all my life, about Heavy Metals in amalgam fillings.. he said, when asked, that no he didn't think it was harmful, but did mention that three countries have banned metal fillings! So at least it's not something that's completely foreign to him.. Getting my fillings (12!) replaced is on the distant horizon, as there are more pressing matters and i don't have the money. But i'm conflicted. I don't know if i want to stick with Tom, who is an impeccable dentist, he's an immense perfectionist so you know things are done right--and i've seen him for as long i can remember...or if i want to find a dentist who knows more about HM and mercury detox and all that. Clearly i have time to think about it, but wanted to hear you guy's thoughts!

PT appt for my torn shoulder this afternoon. I think the work always stirs up toxins but i am happy to say that i think it's actually healing! I've been faithful for the most part to my exercise routine, which helps tremendously. Still unable to walk my puppies on my own though, which is sad and kind of a hassle. It's also hard with Spring here i want to get my bike out and go bike around but leaning on my arm for hours does not (and is no, haha) a good idea.

Random Question

How do i get a cute little picture when i post like some of you have? I have one on my profile but it never shows up.

Hope the sunshine is healing everyone magically!

~Katy

[aprilh]

I took my allergy shot that has the tree mixture again today, and STILL reacted. It is down 7 doses from when I first started reacting and is the lowest possible dose with what I currently have for serums. I'll write my allergist again.

Sherry

Sherry,

I read somewhere that some allergy shots have aluminum as a binder. Just a thought. You might need to check into that.

April

[dlp252]

How do i get a cute little picture when i post like some of you have? I have one on my profile but it never shows up.

There are two places to load pictures. I think where you have yours is on your personal page. Anyone who clicks on your "profile" will see that picture. You would also need to load it in the Signature Section under something called "Avatar Settings" (or something similar).

[AndreaB]

How do i get a cute little picture when i post like some of you have? I have one on my profile but it never shows up.

There are both profile/personal photos and avatars. You want to edit avatar and then load it. If you need specific directions holler.

On the dentist, personally, I'd go to someone who knows how to deal with amalgam removal and then you could continue with your regular dentist after that if you choose. He may be meticulous but that won't help you if he doesn't use a dam for one, plus other helps to not get so much of the vapors.

I'm planning on getting mine done this fall. I have 9-10 to have done, including redoing my crowns which have metal underneath them.

Hope you pt appointment goes well. A torn shoulder sounds very painful.

[jerseyangel]

The chat is not affiliated with LN, though many of its members go there.

Sorry I misspoke--as I told Jin, I'm not familiar with it

[AndreaB]

Sherry,

I read somewhere that some allergy shots have aluminum as a binder. Just a thought. You might need to check into that.

April

I guess I shouldn't be surprised.

Sherry,

Was aluminum in your metal profile?

I'm sorry you're having a rough time with allergies and such. I hope things calm down soon for you.