Omg...i Might Be On To Something

[AndreaB]

Hubby's coming home via the eastern side of the mountains. I told him now was the best time because snow is supposed to hit the main pass tonight, right now there is just water in spots. He still won't be home before 7 and probably later but at least he'll be home. I was looking at some video of the floods, it's awful. I did call one person I was concerned about. Her house is surrounded but they are ok. No water in the house. Her hubby works for search and rescue and they have had a hard time. He almost got stranded too.

Haven't got a thing done as I was waiting for hubby's phone call. If I stray too far from the phone I can't hear it.

[Offthegrid]

Something systemic is definitely going on with you. Your digestion issues, rashes, bacterial vaginosis all point to an overload of the beasties, toxins, deficient/hyper immunity, etc.

I'm discovering this thread and doing lots more research now that it's clear to me I have multiple food intolerances. And, ahem, have had some other issues mentioned here. *blush blush*

I'm questioning what's causing all these food intolerances in my case. I initially did come back negative for parasites from a stool sample somewhere around August 2006 months before "gluten intolerant" dx via blood test.

Beasties I'm guessing you mean overgrowth of bacteria. I was curious what you meant by "deficient/hyper immunity"?

[tabasco32]

Hey everyone,

So i went yesterday to see Dr. M in Palo Alto. Yeah It was intense, long and tiring.

I go for LED treatment on Monday with Acupuncture first.

He has me on Amantilla and Schizandra. I think that's how you spell it. Anyways I don't have much money for it so he says I can make payment arrangments or something.

Lots of stuff going on with me. I feel yucky. I told him about how I was eating 3 pints of ice cream a day. He said no more sugar for you. I knew he was going to

tell me that.

Then my mom asked him what would happen if I was losing weight again. I weigh 118 pounds now. He Said no to stop the ice cream just yet.

OKay hope everthing is well with all you

Rachel glad you were able to enjoy the movie, you deserve it!

take care

Lisa

[AndreaB]

Hey everyone,

So i went yesterday to see Dr. M in Palo Alto. Yeah It was intense, long and tiring.

I go for LED treatment on Monday with Acupuncture first.

That is great news Lisa! I'm glad you got in to see him.

Keep us posted as you are able please.

[confusedks]

Hello everyone,

I am at my grandparent's house inbetween the blood and PICC line. The blood draw was okay, actually pretty painless. I took off my sweater and the phlebotomist started laughing because I am so pale and pretty veinless...lol. Then he took my blood and said, "you have REALLY low blood pressure." It was okay, now I am waiting until 2 pm to get the PICC line in. I am really worried that won't go well, but we'll see.

I will check back in later.

Kassandra

[Green12]

Lisa, I'm glad you got in to see the Dr. That's great he is working with you on payments

I'm discovering this thread and doing lots more research now that it's clear to me I have multiple food intolerances. And, ahem, have had some other issues mentioned here. *blush blush*

I'm questioning what's causing all these food intolerances in my case. I initially did come back negative for parasites from a stool sample somewhere around August 2006 months before "gluten intolerant" dx via blood test.

Beasties I'm guessing you mean overgrowth of bacteria. I was curious what you meant by "deficient/hyper immunity"?

Hi Offthegrid,

I have quite a lot of brainfog and my word recall isn't so great beasties and deficient/hyper immunity is all I could come up with at the time

"Beasties" is code for pathogenic organisms like bacteria, viruses, parasites, fungis, yeasts, molds, etc.

When I say deficient/hyper immunity I am referring to the immune spectrum. At one end is a deficient immune system and one that cannot produce an immune response in order to fight off the foreign invaders (i.e. infection).

At the other end of the spectrum you have autoimmunity, or an over active (hyper if you will) immune response where your immune system is functioning but it is not functioning properly and attacking the body's own tissues.

[confusedks]

I called the office who was supposed to give me the Lyme results on Friday...she said she totally forgot to send them. She sent them to my house, but I'm at my grandparents. My mom is home and she said that she did just send them. Hopefully I can get ahold of them before my PICC line, but if not, I will post the results later. Also, what forum is the Lyme Disease thread under? Isn't it undre other food intolerances/leaky gut?

Kassandra

[AndreaB]

Hello everyone, The blood draw was okay, actually pretty painless. I took off my sweater and the phlebotomist started laughing because I am so pale and pretty veinless...lol. Then he took my blood and said, "you have REALLY low blood pressure." It was okay, now I am waiting until 2 pm to get the PICC line in. I am really worried that won't go well, but we'll see.

Glad that part went well. Hoping the PICC line will be smooth and seamless for you.

I called the office who was supposed to give me the Lyme results on Friday...she said she totally forgot to send them. She sent them to my house, but I'm at my grandparents. My mom is home and she said that she did just send them. Hopefully I can get ahold of them before my PICC line, but if not, I will post the results later. Also, what forum is the Lyme Disease thread under? Isn't it undre other food intolerances/leaky gut?

Can't wait to hear about them.

Post them here too.

The lyme thread is in the gab/chat section.

[jerseyangel]

Also, what forum is the Lyme Disease thread under? Isn't it undre other food intolerances/leaky gut?

Kassandra

Yes--it's in that forum now. It's been bounced around a few times....

Open Original Shared Link

[Offthegrid]

What is a PICC line? doesn't sound fun -- hope all goes well, though.

[CarlaB]

LOTS OF PERSONAL SHARING WARNING

(yes, the squeemsih should avert their eyes)

The doctor's office called. Its bacterial vaginosis, not a yeast infection (so it makes sense now why nothing was really working).

The only reason I am adding this here is because I find it really odd that my whole body seems to be a circus.

I have rashes all up and down my legs, my digestion is a joke, the skin is peeling off my scalp - again, plus the downstairs nonsense.

I am beginning to wonder if some if not all of this is connected and what if it isn't celiac at all.

I'm sure it is all tied together in some way ... eventually you will unravel the mystery.

Hi Julie...I'm feeling like I'm really behind right now!!

I was just wondering today where you've been.

I'm discovering this thread

Welcome!

Hey everyone,

So i went yesterday to see Dr. M in Palo Alto. Yeah It was intense, long and tiring.

I go for LED treatment on Monday with Acupuncture first.

This sounds very promising, thanks for the update!

I'm still feeling pretty good. It's that time of the month and this is the first time my symptoms have flared because of it .... but I'm still feeling good and am functional ... about 85% ... minor symptoms. I'm thinking symptoms may be flaring a bit this time because I'm feeling so good ... perhaps they did before but I felt so bad anyway I didn't notice.

Well, gotta feed the kids .... dinner's ready, just have to serve it .... anyone want a 17 year old boy, no charge? LOL

[dlp252]

What is up with this pain in my leg? Do worms live in your leg muscles? (day 2 on humaworm). It's like a stabbing pain in the inside of my thigh area then it goes away. When I press on it, its sore, but its only stabbing pain for a second. UGH! I hate wierd things....makes me crazy!

I've been having random pains too...mostly in the abdominal and chest region though.

LOTS OF PERSONAL SHARING WARNING

(yes, the squeemsih should avert their eyes)

Nah, you can say just about anything here...just don't mention pink glittery ecoffee when I'm around.

I'm getting behind in the thread because I've been distracted by other non-health related stuff. I'll get it together soon.

Something FUN I hope!!! I am so happy the DMPS is going so well.

Haven't got a thing done as I was waiting for hubby's phone call. If I stray too far from the phone I can't hear it.

I'm very glad he's coming home tonight!

I'm discovering this thread

Hello and welcome!!!

So i went yesterday to see Dr. M in Palo Alto. Yeah It was intense, long and tiring.

I go for LED treatment on Monday with Acupuncture first.

Thanks for the update!! It's so nice to read your posts now as compared to a few months ago...there's a lot of hope there!

I am at my grandparent's house inbetween the blood and PICC line. The blood draw was okay, actually pretty painless. I took off my sweater and the phlebotomist started laughing because I am so pale and pretty veinless...lol. Then he took my blood and said, "you have REALLY low blood pressure." It was okay, now I am waiting until 2 pm to get the PICC line in. I am really worried that won't go well, but we'll see.

Yay, glad it wasn't too painful.

What is a PICC line? doesn't sound fun -- hope all goes well, though.

It's sort of like a permanent IV portal. They usually put it in the forearm area. They leave it in so that you can have IV medicines instead of having to have TONS of injections, and some people have to have IV meds a few times a week, so it makes it a little easier. At least that's what I remember, but I'm sure our resident expert will elaborate when she gets home.

[ShadowSwallow]

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

Mom refuses to work with me to write out a plan because there's so much in flux with my health. So I'm allowed to write out what I want by myself. I understand her point, but can't we at least have something we can work towards?

Also, when she ordered the Humaworm today (finally) she talked to the person she was ordering it from about my "lyme with the Celiac complication." And this lady recommended doing nothing while on Humaworm, and then just taking Pau d'Arco. So now we're taking medical advice from the receptionist at a herbal company? This is getting better and better. So any sort of addressing lyme is a completely "moot point" since we're definitely not doing anything until mid-January.

I've completely lost patience with her again, and because of that I'm being "adversarial" (her words). Which is the last thing I need now. It's just so frustrating that, while she acknowledges that we're doing nothing now she'll tell me that "your Dad and I need to gather information to decide what is best for you." And the best thing about that is that Dad could care less about alternative stuff, and is of the opinion that Mom's a hypochondriac and turning us into ones, but he is willing to pay for it. Oh, yes, she won't listen to any of the information I try to tell her.

Also, she won't even look at the Cowden Protocol information I printed out. But she did seem concerned when I explained to her how far, far, far behind I am in my schoolwork, and I think she finally understands why I don't help around the house like I used to and sit in front of the computer so much.

Kassandra,

Hoping everything went well!

Rachel,

Great to see you around again.

Andrea,

Wonderful that your husband's heading back.

Kristina,

Definitely something bacterial going on in your system. You'll figure it out, don't worry, you will be better some day.

[AndreaB]

... about 85% ... minor symptoms.

That sounds great! You've really made alot of progress this year.

Hey Carla, my daughter wants a new mom but I don't know if I'm up to a challenging 17 year old. I'm having enough trouble with an almost 8 year old. Her idea of me helping her with things she doesn't understand is to give her the answers. She's getting behind (about 1/2 week) because she insists she doesn't know what to do, but won't listen either. We have a three week break coming up the around Christmas so I'm not too worried about it right now. I'll probably shelve some of this til the weekend and then work with her while Mitch keeps the other two out of our hair.

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.

You and Kassandra are in a tough spot.

[CarlaB]

Andrea, my son is the first kid in recorded history who was expelled from HOME SCHOOL!!!! We didn't know what to do with him and ended up sending him to boarding school for one semester. About two months into it, a friend said to Morgan and I, "Boy, you sure must miss him!" She and I looked at each other like and said NOTHING! LOL

It's so hard handling a difficult child ... and everyone thinks YOU are just overreacting and too close to the situation ... btw, he FLUNKED self-control and got "the talk" at boarding school, the talk that starts out, "We've never had to expel someone before and we don't want you to be the first ..."

Anyway, I home schooled the rest for ten years, but he came back from boarding school and went to public school the year after that. I lasted with him till he was in 6th grade.

Birdy, I'm sorry it's so hard with your mom. Perhaps you should print out the Burrascano guidelines for your DAD! Then it will be medically real to him.

And, ummm, I'm glad I didn't ask any questions when I ordered Humaworm.

[confusedks]

Hello all,

Well, that was an experience I could have done without. LOL! It wasn't HORRIBLE, but it wasn't any fun either. They did it in an Operating Room...sterile environment (my grandma had to leave...I guess she wasn't sterile enough... ). There were 3 people, the Dr./surgeon, a nurse and another nurse. One nurse stood there and basically held my hand the entire time because I am 17, I'm still considered pediatric...lol. She talked to me about the most random things ever...lol!

They gave me a shot of a numbing medication, that hurt, but not terribly. Then they started putting the tube in, and I could feel it...gross!!! I could literally feel the tube going by my neck and up my arm...eww! Then took about 100 x-rays to make sure it was placed properly. The whole thing took about 1.5 hours...ugh. Then they gave me stitches because they couldn't get the bleeding to stop...lol. Just what I needed, to lose more blood. They ALSO gave me a butterfly thing which they usually use instead of stitches so you can't see a scar, but the bleeding wouldn't stop, so they needed to use both.

It is really hurting now, but I will go take some Tylenol...the only pain med I'm allowed to take because all the others thin blood, which can cause a clot. It's painful, but I have been told to expect tenderness for about a week.

The iron IV's are going to start on Thursday because they have to get everything cleared, etc.

The blood tests for Lyme of course aren't legible because the way the were faxed, so I will call tomorrow to ask to have them fax them again so I can actually READ them. UGH!

Kassandra

[confusedks]

Birdy,

I totally get what you're going through. It is really difficult when you think you have the answer because you're doing the research but your parents (or your mom) don't think you know what you're doing. I get it...if you ever want to talk...feel free to PM me.

Carla,

LOL about missing your son. LOL! That's how it was when my brother was at boarding school for 3.5 years..everyone asked me if I missed him and I would laugh. LOL!

Donna and offthegrid,

Yea, that's a perfect explanation of a PICC line. It stands for Peripherally Inserted Central Catheter. As they explained it, it's a glorified permanent IV.

Kassandra

[AndreaB]

Kassandra,

I'm glad you got through ok. Doesn't sound like a fun procedure for sure.

Hang in there!

[CarlaB]

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 feel bad for feeling this way about my own son .... I think he and I will get along much better when he's out on his own and has learned how hard it is to make it on your own. Sometimes I think hubby and I make it look too easy or something, LOL. He's a good person, just impossible to live with.

The funny thing about him ... he LOVES little kids! He teaches swim lessons and gets all kinds of compliments and requests to be a private swim instructor (still at the local pool). He also frequently will volunteer a weekend to help out with a retreat for younger kids. I guess this is why he's going to work with these priests for a year .... he will be doing youth work, most likely in Europe. He's really a natural working with little kids ... you would think a boy like that would get along with his own mother, LOL.

[confusedks]

I am going to go attempt to put something cold on my arm because it really hurts. Also, there is some blood on the dressing...not sure if that's supposed to be there or not. Hmm. Shoot, I was supposed to go to the Dr tomorrow to have them make sure everything was okay, but now I'm not....we'll have to work on that.

Carla,

LOL! I don't blame you for not wanting IV meds. LOL!

That's funny your son gets along well with kids...I do too! I actually used to babysit a family of 4 kids just about every weekend and on some weekdays. They are like my second family. I was the go to babysitter for a long time, until I got sick. I love kids and want about 1000. LOL!

It really sounds like a great idea to send him away...maybe it will be a good wake up call for him.

Kassandra

[ShadowSwallow]

Carla,

I'm going to do that. I printed it out for my Mom to read as well. If she's so set on calling the shots with my treatment she might as well understand what she's dealing with. There's a fairly good chance she'll read it. The only problem with Dad is that he needs the positive lab results to "prove" that I have this. Having nearly half of the symptoms isn't good enough! But we should (hopefully!) get those tomorrow, and at least the Frey labs one should be fairly accurate, then he'll listen.

I've actually been threatened to be kicked out of homeschool, too. But that was in the beginning transition highschool, while dealing with some major hormonal/emotional/etc issues, and both Mother and I have problems with being passive-aggressive with one another and trying to be in control of things (never would've guessed, right? ). We still have so much conflict between us. Not pleasant for the rest of the family at all. I've never had problems with any of my teachers other than her, though.

Kassandra,

Wow, definitely not pleasant, but it's great that it's over with! No repeated jabbing for days for IVs! Darn fax machine! It shouldn't be this difficult to get lab results!

[AndreaB]

He's a good person, just impossible to live with.

I guess this is why he's going to work with these priests for a year .... he will be doing youth work, most likely in Europe. He's really a natural working with little kids ... you would think a boy like that would get along with his own mother, LOL.

Sounds like this will be a really good thing for him. When does he leave? Is he finishing out the school year and then going?

Birdy,

If I was still at home and your age my mom and I would be going round and round too. The only thing is, she has the utmost trust in the western medical profession.

I'm really wondering if I'm going to be able to teach Talitha. She does good when she understands something, but she's being impossible right now. Last year in November we shelved school for 4 months. Can't do that anymore.

[CarlaB]

It really sounds like a great idea to send him away...maybe it will be a good wake up call for him.

This actually was his own choice. He is putting off college for a year.

I think my son wants like a 1000 kids, too, LOL. He used to say he wanted about 20 kids ... I told him he'd never get a date talking like that.

Carla,

I'm going to do that. I printed it out for my Mom to read as well. If she's so set on calling the shots with my treatment she might as well understand what she's dealing with. There's a fairly good chance she'll read it. The only problem with Dad is that he needs the positive lab results to "prove" that I have this. Having nearly half of the symptoms isn't good enough! But we should (hopefully!) get those tomorrow, and at least the Frey labs one should be fairly accurate, then he'll listen.

Maybe you'll get lucky and get a positive test. If not, the guidelines make it clear that it's a clinical diagnosis.

I've never had problems with any of my teachers other than her, though.

He definitely cannot say the same thing.

Sounds like this will be a really good thing for him. When does he leave? Is he finishing out the school year and then going?

Oh, yeah! He'll have graduated by then! I think it will be a good thing for him. It's the experience of a lifetime, too!

[CarlaB]

I'm really wondering if I'm going to be able to teach Talitha. She does good when she understands something, but she's being impossible right now. Last year in November we shelved school for 4 months. Can't do that anymore.

Andrea, I took homeschooling one year at a time .... that way when I stopped, it was just the decision on what we chose to do that year and in no way was saying the homeschooling was a failure.

I'm very supportive of homeschooling, but I can now also say, there is life after homeschooling and the kids end up just fine. I still homeschool my kids in religious education, but the schools do the rest.

Just take it one year at a time, do what's right this year .... if something different is right next year, so be it.

[Rachel--24]

I dont think I can remember everything I read but I'm gonna try.

Andrea....Is everything ok with Mitch...is he safe at home now?? Sorry Talitha wants a new mom right now...but I'm pretty sure she that some day she will let you know that you're the best mom in the world and that she wouldnt trade you for anyone.

Lisa,

Awesome news about your appt. with Dr. M. If you read this give me a call over the weekend and tell me all the details.

I'm shocked he's saying you can stay on the ice cream!

He's very anti-dairy...he did NOT tell me that I could continue eating ice cream. No fair!!

Offthegrid,

Welcome!!

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.

I got kicked out of school too. It was Catholic school...my mom was pretty upset after having paid tuition from 1st grade on...only to have me kicked out junior year. I wasnt the least bit upset because I finally got to go to public school and wear whatever I wanted!!

Kassandra,

I'm glad the whole PICC thing is behind you know. You're getting things taken care of...one step at a time. Before you know it you'll be seeing the LLMD and things will be moving along alot quicker.

Birdy,

I'm sorry things are so difficult with your parents right now. Hopefully at some point you will all be on the same page.

Everyone,

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.

I'm sure I've missed some people here.