Omg...i Might Be On To Something

[AndreaB]

Tomorrow I see Anna...I havent seen her in months but I'm gonna have her check my pathways and hopefully a few other things.

Hey stranger!

I'll be looking for an update.

Mitch isn't home yet but I expect him within the hour.....I'm hoping anyway. It's a 7 hour drive under good weather conditions. I know the pass was wet but don't know about the highways in Eastern Washington. I don't know if the storm wasted itself out before crossing over the mountains....somehow I doubt it.

I've got to get the children ready for bed. I've not had a good day and am ready for some peace.

[CarlaB]

Carla,

I wonder if my family would have been happy if I'd been sent away

I'm thinking my mom would have missed me....but she's probably the only one.

Well, it's not that we were happy .... it's that we didn't miss the constant state of turmoil. I'm not exaggerating when I say it's constant .... I suspect Lyme, but no sense in treating if he won't cooperate and be compliant in the program.

It's constant turmoil here .... I've pleaded with him to stop if for nothing else because it's not good for my health, but he doesn't care. He'll have everyone upset within minutes of his return home ...

[CarlaB]

I've got to get the children ready for bed. I've not had a good day and am ready for some peace.

Ha! You understand, LOL.

Get some peace.

Oh, you know how I said I didn't feel as great today as I've been feeling? It just dawned on me that yesterday I got tired of ramping up on the samento and jumped from 17 drops to 20 drops ... maybe it's not my menstrual cycle ... maybe it was the samento!

[AndreaB]

Ha! You understand, LOL.

Get some peace.

Oh, you know how I said I didn't feel as great today as I've been feeling? It just dawned on me that yesterday I got tired of ramping up on the samento and jumped from 17 drops to 20 drops ... maybe it's not my menstrual cycle ... maybe it was the samento!

Yes, I understand completely.

The samento could be causing you the dip today.

[confusedks]

Carla,

I also totally understand the constant turmoil, my brother is the same way. He doesn't care about anyone else at all! He really makes everything so tense.

Andrea,

I hope Mitch gets home safely and I hope you can have a restful night.

Everyone,

Does anybody have any ideas on ways to keep the PICC line dry while I shower? I am going to shower in the morning, but I just was wondering what you all thought. Someone on LN said they use veterinary gynecological exam gloves and then also Glad Press N' Seal. Any other ideas? Also, I have no clue where I would get vet gloves in LA...lol!

Kassandra

[AndreaB]

Does anybody have any ideas on ways to keep the PICC line dry while I shower?

No ideas here.......sorry.

[Nyxie63]

Kassandra, maybe try plastic wrap and medical tape at the ends to keep water out?

Andrea, hope hubby made it home safe last night.

-------------

Sorry to be so whiny and self-absorbed. Just got a whole lot of things hit me all at once and I'm trying to deal with them, more or less, on my own. I'm scared, confused, and frustrated. The last month has really sent me for a loop. Between the thyroid biopsy results, the recently found food intolerances, and the possibility of having gallbladder problems, I'm really feeling overwhelmed.

Saw Dr Doofus (the ENT) yesterday. He really really really REALLY wants me to get this thing taken out. Like yesterday. No surprise there.

I didn't get as angry as I thought I'd be or was planning to be. I enforced my views about trying to heal Herbie (the pet name for my primary nodule), rather than get him removed. While we were talking, something hit me....

I'm more afraid of the surgery than I am about the possibility of this being cancer!

I've had surgery before and it was no big deal, although this is the first time it'd be done in order to actually take something out (the other surgeries were to fix a deviated septum and a tubal ligation). The thought of losing a body part scares the crap outta me! I don't know if its my instincts telling me Herbie is benign. Or is it some psychological need to stay intact?

A gal on another board has given me the name of a good iodine doc to see if Herbie can be treated that way. I've tried getting ahold of him, but his number doesn't work. I'm wondering if this is a sign to just give up or a sign to work harder to reach my goals. I really don't know right now. Even if I manage to get ahold of this guy, he's a 3 hour drive away - each way. I don't even know if he takes insurance. We can't afford a lot of out-of-pocket expenses right now since I'm not working.

More news from the body demolition front.....

Getting the abdominal u/s today to see if my gallbladder's decided to rebel too. Should have the results by Monday (provided the GI decides to call me with the results this time without a poke in the ribs).

Again, sorry. Just need to vent somewhere and maybe get a little support/advice. I'm so overwhelmed!

[NoGluGirl]

Dear Everyone,

I went to the doctor for my shot yesterday afternoon, and spoke to her about IgeniX. It just so happens, she went to a conference on environmental medicine and met a doctor from Missouri that specializes in Babesia! This was back in November. She could not remember his last name, but said his first name was Charles. He uses the IgeniX lab as well.

My doctor is ordering the test kit. They will call me when it comes in. I will then get it, and take it to the lab to see if they can do everything necessary to collect and handle the blood sample. I am nervous and hopeful all at the same time. For the first time in an eternity, I finally have some hope.

I told her how harsh these antibiotics are on me. I can barely make it to the bathroom like when I did the Helidac therapy. Due to the yeast and microflora issues, she recommended a supplement containing Streptomyces organisms. They help push out the yeast, and are not destroyed as Acidophillus is from the antibiotics. It is expensive, but Dad is going to consider it.

I may have to stay on these antibiotics until my tooth is removed, so the Streptomyces may be worth pursuing. My colon is bubbling like a volcano. Dad is having the same gas issue, and I was worried we caught a virus, but Mom does not seem to be having that issue. Plus, Dad and I are both on antibiotics. That is probably not a coincidence.

It turns out, Streptomyces is one of those SBOs, like what Mia recently began taking. I have heard good things about these organisms. They are good to have in your system. Digestive issues particularly are what they are used for. I hope I get to get them. My doctor also said it cannot hurt to get rid of the dairy and soy for a while to see how I do, and since I have already gotten rid of the dairy, that is half done.

I will post my column later. I have been reading along. The reading part is caught up, now all I need to do is reply! Warning: it will be a long one! There are a lot of people to respond to!

Sincerely,

Jin

P.S. I showed the nurse what I want to do to my hair, and she thinks it is really cute! My doctor was glad I grew out my hair, because of the toxic effect it has on the liver. So, maybe this new hairdo would be better for me in more ways than one! Highlighting does not require you to touch the scalp like dying it all one color does. What do you think? Would highlighting be less toxic?

[CarlaB]

Dear Everyone,

I went to the doctor for my shot yesterday afternoon, and spoke to her about IgeniX. It just so happens, she went to a conference on environmental medicine and met a doctor from Missouri that specializes in Babesia! This was back in November. She could not remember his last name, but said his first name was Charles. He uses the IgeniX lab as well.

P.S. I showed the nurse what I want to do to my hair, and she thinks it is really cute! My doctor was glad I grew out my hair, because of the toxic effect it has on the liver. So, maybe this new hairdo would be better for me in more ways than one! Highlighting does not require you to touch the scalp like dying it all one color does. What do you think? Would highlighting be less toxic?

Must be Dr. C, the LLMD in Missouri .... maybe your doctor would be willing to call him for advice in treating you if you do have Lyme. Maybe you can make a "new" LLMD where you are. Maybe your doc will be open to hearing about ILADS .... you might tell you about their website.

I think if it doesn't touch your scalp that it's not as toxic .... but it's not non-toxic either ... just the lesser of two evils.

With your hair being so dark, I would pick a color that's just a little lighter than your natural color for highlights .... don't use bleach! You will risk orange hair if you pick a color that is too light or use bleach.

Kassandra, I don't know about showering with the PICC line ... let us know how it goes. I'm anxious for you to get your iron!

Nyxie, I'm sorry I don't have any advice for you other than to keep looking for what's wrong .... and get a second opinion on the thyroid ....

[melmak5]

Kassandra - I second the plastic wrap and some medical tape to keep the line dry. Good luck. I hope this starts the healing process.

Jin - any hair dye has toxins, but highlights would be less and even better if you avoid the scalp. I think its important to feel attractive and do something fun with the body you currently have to tote around and deal with. My vote is YES!

Carla - Its not the same, but my middle sister was horribly difficult when we were growing up. She was institutionalized a few times and people would say "oh I am so sorry, I bet you cannot wait for her to come back home" and it would take all my being not to say "yeah right!"

They told my parents she would NEVER finish high school (her IQ is in the genius level, but she is emotionally about 15). Needless to say there were tears in everyone's eyes when this past summer she got her associates in early childhood ed.

She is amazing with children! She cannot be bothered to figure out how to appropriately act with her family (or most adults) but with kids, its like she's on their level.

Its hard to admit that sometimes you love your family members but whats best for them (and you) might not be the "traditional" setting.

MY STATUS - someone asked me what my "diagnosis status" is.

"Celiac via blood test"

my TtG in June was 58 (normal is 1-20 at the lab)

one of two of the gliadin levels were also elevated

The endoscopy scheduled for the end of the month is to take biopsies and see if

1. there is any damage

2. any signs of abnormal cells, specifically ones indicating a gi allergy

3. biopsies of my innards

I had an endoscopy done in May, but they did not biopsy then because they thought I had a motility problem, ulcer or cancer, not celiac... that came into the picture after. Everyone wishes they had biopsied then, but oh well.

The receptionist mentioned having the nurse give me "a little adavan" to prevent another panic attack before the endoscopy. I am not really a fan of drugs, but I am leaning more towards "yes"

[CarlaB]

She is amazing with children! She cannot be bothered to figure out how to appropriately act with her family (or most adults) but with kids, its like she's on their level.

Its hard to admit that sometimes you love your family members but whats best for them (and you) might not be the "traditional" setting.

Yes, you have a point with this!

My also has a high IQ .... but poor grades ..... and very immature. It's been very energy consuming raising him ....

That's great that your sister got her degree. Thanks for sharing.

If you think you need the drug to avoid a panic attack, then I'd take it. I'm not for unnecessary drugs, but I think that sometimes they are the lesser of two evils.

[Offthegrid]

Morning, everyone. I have a major, MAJOR announcement.

Attention! Attention, everyone!

Are you ready?

Are you sitting down?

Prepare to be shocked...

I had a normal BM this morning for the second day in a row. AND, at the same time as yesterday. Can you believe it? I'm "regular!"

I don't think that's EVER happened in ... well ... as long as I can remember. CELE-BRATE GOOD TIMES, COME ON!

Seriously, I'm really happy. It looks like the potatoes were indeed a major cause of my problems. I'm still eating rice and corn. I want to go back and test a few other foods I thought I couldn't have now that I've ID'd the actual source. Read: dairy-free chocolate.

I thought I'd miss potatoes, but honestly, no big deal. (Of course, it's only been a week.)

This after my hubby went on a long rant about how NOBODY can be allergic to potatoes. And how I'm not eating anything anymore. And he's sick of me being paranoid with my diet. And one day I'm going to crash because I don't eat any foods and I keep eliminating things and torturing myself. Like white potatoes are particularly nutritious to begin with. And what about the 5-7 servings of fruits and veggies I eat a day? Heck, I eat a LOT healthier than he does. Sometimes he can be incredibly supportive (he made me homemade spaghetti sauce when I eliminated soy) and other times he just is very ignorant.

Kassandra, I'm so glad to hear the PICC line went OK. I think it's cute the nurse held your hand. I'm 28, but I'd still like a nurse to hold my hand. Usually they are just mean.

What is IgeniX?

[CarlaB]

Congrats on the normal poo!

IGeneX (www.igenex.com) is a lab that tests for Lyme Disease. If you need to be tested, this is who you want to do the test.

[Offthegrid]

Wait, is there corn in Fruity Pebbles? I may have inadvertently eliminated corn, too, by eating so many unprocessed foods. I'm certain on the potatoes, but I might have to do a corn challenge possibly.

-- start rant --

So it looks like if I just keep eating "real" food, I should stay healthy and happy. I feel a lot better already. And I'm glad that I had this problem in another era. My mom REFUSES to be tested for even gluten intolerance/celiac. She says, "I've been diagnosed with IBS my whole life." Or, "I have problems no matter what I eat." Of course if she's intolerant to gluten, dairy, soy and potatoes she's going to get sick no matter what she eats.

And why, after decades of chronic D, would you not want to try to feel well? I don't get it.

Well, you know what? If I had seen a gastro again (saw one, he was a jerk and I didn't go back) and said I keep getting sick despite eating gluten-free, I bet I would have gotten the IBS label, too. And given some pills. And sent on my merry way still having D and abdominal pain and bloating. I would have never known to try eliminating other foods. And I certainly wouldn't have thought someone could be intolerant to potatoes.

It's just shocking to me, I guess, that gluten intolerance is finally getting some press, but none of these other intolerances are.

-- end rant --

In other news, I saw Amy's now makes a non-dairy, gluten-free pizza. I'm baking some Amy's for my gluten intolerant brother and aunt on Saturday because they are helping us move into our first house. The pizza has soy, though.

[CarlaB]

Wait, is there corn in Fruity Pebbles? I may have inadvertently eliminated corn, too, by eating so many unprocessed foods. I'm certain on the potatoes, but I might have to do a corn challenge possibly.

Why don't you wait until you're regular for a little longer before you challenge it. Plus, it might end up just being the processed food if you add that back in for the challenge ... when you do challenge, try to use a pure form of the food.

[dlp252]

Kassandra,

Glad the PICC went okay! I'm with Carla...can't wait for you to get some iron, lol.

Well, the hope I had to work out a plan for my mother and I to follow for dealing with lyme, etc, blew up.

I'm so sorry!

Kassandra, I'm glad your finished with it ... your description REALLY makes me hope I don't have to go with the IV meds, LOL.

I REALLY hoped I wouldn't have to have one BEFORE I read the description, but am terrified now, lol.

Oh, you know how I said I didn't feel as great today as I've been feeling? It just dawned on me that yesterday I got tired of ramping up on the samento and jumped from 17 drops to 20 drops ... maybe it's not my menstrual cycle ... maybe it was the samento!

I have to go back and see what you said about parsley...I know you take it with burbur because the burbur helps with something. Sheesh...a bunch of lymies trying to remember stuff is just funny sometimes. Anyway, I've had terrible percolation in my gut ... I think some of that has to do with the Humaworm, but it's been REALLY bad in the last couple of days and I'm thinking it might be the parsley. Could also be the stupid adaptocrine Anna wanted me to take. I didn't take the adaptocrine today, and used like half the drops of parsley this morning, and so far not so much percolation. I'll try upping it slowly this time, lol.

Does anybody have any ideas on ways to keep the PICC line dry while I shower? I am going to shower in the morning, but I just was wondering what you all thought. Someone on LN said they use veterinary gynecological exam gloves and then also Glad Press N' Seal. Any other ideas? Also, I have no clue where I would get vet gloves in LA...lol!

Well, I've not had a PICC line yet, but a few years ago I had to have surgery, and had to go in on the Friday before (surgery was on a Monday), for some bloodwork and they INSISTED on putting on my hospital ID bracelet that day. I don't know why they wouldn't let me do it myself Monday morning, but no, I had to figure out how to shower all weekend without getting the stupid thing wet. I think I tried the glove thing, but that didn't work well for some reason...maybe I didn't use the right tape. I think I ended up using the plastic wrap idea, which worked okay, I just had to make sure not to stick my hand in the water stream--still water got in there, just not as much.

Again, sorry. Just need to vent somewhere and maybe get a little support/advice. I'm so overwhelmed!

No need to apologize!!! We've all been overwhelmed at some point during this thread journey. I'm so sorry you have to go through it though.

My doctor is ordering the test kit. They will call me when it comes in. I will then get it, and take it to the lab to see if they can do everything necessary to collect and handle the blood sample. I am nervous and hopeful all at the same time. For the first time in an eternity, I finally have some hope.

Yay!!! Hope is good! Sounds like you had a good appointment! Um, about the highlighting...maybe I have a sloppy hairstylist, but she gets the highlight dye on my scalp. Of course, I usually have the rest of my hair dyed too, so she might have to do that.

The receptionist mentioned having the nurse give me "a little adavan" to prevent another panic attack before the endoscopy. I am not really a fan of drugs, but I am leaning more towards "yes"

If it helps you relax I say go for it.

I don't think that's EVER happened in ... well ... as long as I can remember. CELE-BRATE GOOD TIMES, COME ON!

LOL! Congratulations! We get excited about stuff like this around these parts, lol.

I didn't think I reacted to corn either until I cut it out for several weeks this year...when I tried eating it again, I most definitely reacted, but in my case I think it has more to do with the mold issue than the actual corn itself.

[melmak5]

Offthegrid - WOOOO HOOOO for Poo!

Carla - I mostly shared because she has far exceeded anyone's expectations and is fully functioning. She does not have to live with my parents, and is slowly starting to make better connections. She is also no longer violent, which is amazing. Hopefully this will have a positive result for your family as well.

Jin - I would say that your bowels are probably a mess from the antibiotics. Lots of water, probiotics and trying to eat solid food when you take the antibiotics should help. When does the tooth come out?

[CarlaB]

Donna, I'm thinking it's the other stuff ... parsley is pretty benign ... I think ... I take it with the burbur for detox. It almost immediately takes away that "Lymie" feeling ... you know, the feeling that you have a constant hangover? Now that I don't have it continually, the parsley and burbur take it away .... of course, they could be the reason I don't have it continually!

The hospital bracelet wasn't waterproof? Seems like I showered like normal when I was in the hospital after having babies ....

[AndreaB]

Andrea, hope hubby made it home safe last night.

He got home about 9 pm last night.

I hope the U/S goes well today and that your gallbladder is ok.

I'd get a second and maybe even a third opinion on the thyroid.

My doctor is ordering the test kit. They will call me when it comes in. I will then get it, and take it to the lab to see if they can do everything necessary to collect and handle the blood sample. I am nervous and hopeful all at the same time. For the first time in an eternity, I finally have some hope.

Great news!

MY STATUS - someone asked me what my "diagnosis status" is.

"Celiac via blood test"

my TtG in June was 58 (normal is 1-20 at the lab)

one of two of the gliadin levels were also elevated

The endoscopy scheduled for the end of the month is to take biopsies and see if

1. there is any damage

2. any signs of abnormal cells, specifically ones indicating a gi allergy

3. biopsies of my innards

I had an endoscopy done in May, but they did not biopsy then because they thought I had a motility problem, ulcer or cancer, not celiac... that came into the picture after. Everyone wishes they had biopsied then, but oh well.

The receptionist mentioned having the nurse give me "a little adavan" to prevent another panic attack before the endoscopy. I am not really a fan of drugs, but I am leaning more towards "yes"

I don't remember if you were the one considering going back on gluten (questioning whether it was a real problem) or if that was someone else. If you had positive levels it's celiac. I'm not sure what the conclusive test is though.....they usually test 5 things.

I'd do what you need to do to prevent a panic attack.

I had a normal BM this morning for the second day in a row. AND, at the same time as yesterday. Can you believe it? I'm "regular!"

Wooo Hooo!

Sorry about the potatoes. At least you have found the culprit and can eventually work on challenging some of the other foods.

So it looks like if I just keep eating "real" food, I should stay healthy and happy. I feel a lot better already. And I'm glad that I had this problem in another era. My mom REFUSES to be tested for even gluten intolerance/celiac. She says, "I've been diagnosed with IBS my whole life." Or, "I have problems no matter what I eat." Of course if she's intolerant to gluten, dairy, soy and potatoes she's going to get sick no matter what she eats.

A lot of times people just don't want to give up their beloved food items. I don't know that my mom would either unless she had a definate diagnosis of celiac.

The hospital bracelet wasn't waterproof? Seems like I showered like normal when I was in the hospital after having babies ....

Yeah, I had my last bracelet put on on a Friday or Saturday to be prepared for admittance on Monday. I showered with it and it did get a little wet but was still readable.

[dlp252]

Yeah, my mom won't go get tested for celiac either. It was funny because a couple of weeks ago at lunch, we were talking, and she said: "Yeah, I can't eat oatmeal or barley anymore...it gives me digestive issues." I just gave her the look, and she said "I know what you're thinking." She still won't get tested. She has MANY of the same issues I do.

The hospital bracelet wasn't waterproof? Seems like I showered like normal when I was in the hospital after having babies ....

Yeah, I'm thiking it's the other stuff too. I really didn't want to start it again anyway, lol.

Nope, the bracelet was like a plastic sleeve, there was a paper insert with my info on it. There was a seam on the back side of the bracelet, but I don't that that was completely sealed...I think it was just folded over a few times. The ends of the bracelet had the "buckle" hardware, but I could see the end of the plastic/insert and the end wasn't sealed, lol. The nurse told me not to get it wet. The few drops of water that got in, actually smeared the ink on some of the info. I think they've got better bracelets now. That surgery was in 2001, and I had another surgery at the same hospital in 2006, and the bracelet was all plastic (I think, no insert anyway) for that second one.

[CarlaB]

I had my last baby in '98 ... maybe I just didn't care if I messed up the bracelet, LOL.

[tom]

Morning, everyone. I have a major, MAJOR announcement.

Attention! Attention, everyone!

Are you ready?

Are you sitting down?

Prepare to be shocked...

I had a normal BM this morning for the second day in a row. AND, at the same time as yesterday. Can you believe it? I'm "regular!"

I don't think that's EVER happened in ... well ... as long as I can remember. CELE-BRATE GOOD TIMES, COME ON!

:)

I remember perfectly in June when I let out a "woohoo!" at a normal bm. Couldn't help it, it had to be out loud.

Great news, Offthegrid!!

[tabasco32]

Hi everyone again!

Carla it's good to hear you are feel good most time. That gives us all hope.

Rachel I will call you this weekened for sure. Yeah It shocked me to about the dairy with the yeast and all. I am allergic to honey, eggs, cow milk, and sulfur. So I might have to find a ice cream with no eggs and goats milk. I know whole foods has some.

I know if I cut out ice cream I will be constipated again and I am not looking foward to that.

Jin hope you do o.k with the anties and stuff.

The doc said the mercury is affecting me in a strange way, very strong. I have toxins gas coming out of me. Yeah cool right!

He says after I get better god willing that I will have a special gift. I don't think I call this a gift?

Asperguillis big one for me too! I want to stick with Dr. M. He seems to know what he is doing with this. The trip of 3 hours to and fro are tiresome though.

I feel ill today like the flu or something. I wonder if it's the supplements or cutting down on ice cream.

Take care

everyone

lisa

[confusedks]

Donna,

When I was hospitalized, my bracelet was totally waterproof. It may have been because I was on the pediatric floor...they didn't trust me!

My mom won't get tested either for Celiac...which is so annoying because she is still on gluten and has so many symptoms.

I don't blame you for not wanting a PICC line...I didn't think it would hurt this much.

Jin,

That sounds like a great appt. you had...I hope you can get some help from your Dr.

I don't know if this is right, but I think highlights DO touch the scalp, because my parents are in the hair industry (well, my stepmom) and I think I remember when my dad would do her hair (he used to be in the hair industry), she would always have hair color on her scalp. You may want to look into natural hair color.

Carla,

I am excited to get me my iron too! LOL! I think I am going to have to go to the store to get some medical tape because I don't think we have any. I'll let you know how that goes....lol.

Offthegrid,

It was really sweet that the nurse held my hand...and one point I asked her if I could squeeze it and she said it was okay...so I did! LOL!!!

As far as the multiple food intolerances, it's really hard to deal with. I am able to eat more now than I was a while ago, but it is still really hard. That is the reason I am doing more and more raw foods because they are less allergenic for me. I can actually eat almost everything they talk about in a raw foods un-cook book, and it feels great. I feel semi-normal.

Everyone,

I actually fell asleep at 11 last night which was amazing. But then I woke up at 1 wide awake and STARVING! I went and got something to eat and took more tylenol for my arm. The pain was pretty bad last night, and that's what woke me up. I am making sure to take tylenol as often as I can because the pain gets too uncomfortable. The only way I was able to fall asleep was with an ice pack on my arm because it helps with the pain.

I did end up waking up at about 10 this morning so I slept a lot which I needed, but my arm is killing me. Also, the way they had my laying down on the operating table really screwed my neck up again...sigh. And, I can't really take an epsom salt bath.

Kassandra

[Green12]

Andrea, glad Mitch got home safely.

Jin, great news on getting the test kit ordered, I hope it gives you some answers.

Offthegrid, yay on the "movement"

Kass, glad everything went well.

You asked where I got my lyme test through and it was Labcorp

Everyone, lately, well really about the last year, I wake up with my hands numb and they've fallen asleep. What could that be from?