Omg...i Might Be On To Something

[aprilh]

i was so livid. Hubby kept trying to calm me down and it was not working. My reaction was so bad, I was even scaring myself. My body was freaking out from the mold and from being mad.

I am feeling a little better today. I only have two more places in my house to deep clean and im hoping for no surprises. It seems everytime i think I am past the mold in my house, i find more of it.

I was mostly mad at the fact that the kids had made stuff in school and i had to throw it all away. I can replace the trees and ornaments but i cant replace the stuff the kids made. My girls were like its ok mom, we can make u double of everything this year.

Im really thinking of living in a bubble for a few months lol

paula

Paula,

So sorry you found mold again! How frustrating! I would be sad too to have to throw out my kids things. It was really sweet of them to offer to make extra stuff this year.

Are you taking any toxin binders? I wonder if you took a binder that would help reduce the load that circulates through your body? There was a time that everything bothered me for instance going to Home Depot would bother me because of all the chemicals in the products. Acupuncture has REALLY helped me move beyond this. I had to go every week for a while, but now I go less. Now I can go to stores like that and totally don't have a problem.

Dont be afraid to have kids. If it wasnt for them, i would stay in bed all my life lol

The thing with him that is the hardest is he also diagnosed bi-polar. it is hard to really get him to listen to me about anything.

I agree with Rachel, get as much testing done as you can and present the facts to him. If you can find a good doctor who will do it that would even be better.

His Bi-Polar-ness might get better once his GI issues are resolved. Maybe you could do a "challenge" with him. Like challenge him to try it for 2 months and see how he feels.

When my kids and I went gluten free....I tried so hard to make sure they had all the "normal" foods but in a gluten free form (corn free too which made it extra hard). Now its not as hard anymore.

I've been thinking the past couple weeks about getting a new Dr. (yeah...cuz I dont have enough for a whole softball team yet ).

Rachel,

I totally think that you need to try this new doc. And I don't think the other doc will be hurt....because you aren't really dealing primarily with the issues that he treats. And not to sound harsh, but you are the one dealing with the issues and he'll just have to get over it!! It doesn't sound like he's an ego-maniac so it should be fine.

The posts dont seem CLEARLY seperated anymore!!

Carla...I think this is causing me to become OCD.

Maybe its because the OMG thread is SO LARGE that they had to reduce the spacing to make it all fit!!!

[aprilh]

I'm really frustrated. I realized today that I'm really ready to move on in my life, and NOT be sick anymore! I want to get a job, I want to go off to college, I want to do all the "normal" teenage stuff, and it's not going to happen the "normal" way...AT ALL!

Totally understand! I am sorry this is all happening! I really hope some of these issues get resolved SOON so you can go do most of that....you'll obviously be delayed but hopefully you'll be able to accomplish your goals one of these days.

[AndreaB]

Kassandra,

Hugs. I'm sorry about not being able to go through graduation. If you asked my daughter right now, she'd so not understand, lol I'm hoping for a better school year with her since we changed curriculums. We start back up on the 11th of August. Going to her evaluation test in 1/2 hour.

Your plans may be delayed but they will be realized, minus the high school graduation walk. College is still highly attainable.

I hope you find a doctor that can help with other issues your dealing with. The LLGYN sounds like a good possibility. Hang in there......you'll get through this.

[CarlaB]

The posts dont seem CLEARLY seperated anymore!!

Carla...I think this is causing me to become OCD.

Whenever you see a new picture, there's a new post.

Both my parents are OCD. I've consciously fought becoming that way since I was a kid. Six kids has pretty much cured me of it, though the first thing I do when I start to feel good is clean .... Adam or the kids will say, "Oh, you're cleaning, you must be feeling better!

You could tell when I was really sick ... I never made my bed.

I recently decided to drop out of High School and take my GED and when I'm up to it, go to community college and then transfer to a UC school (like UCLA, etc.)

This is a good decision. I didn't participate in my college graduation .... neither did Adam ..... so, since you've never been through the ceremony, you'll probably participate in that one.

Someone else just posted about their trip to Germany on LN. Why don't you go with us Kassandra? There are currently four of us planning on going in Sept .... just waiting to hear more ... some of us are still cautiously skeptical. I know you're sick to travel, but if you can get here, I'll help you the rest of the time (or we could meet in NY, or whatever place we fly to Germany from). I bet your uncles would cover the cost for you if it were something that would make you feel better.

[Guest tamedandfoxed]

Have you been tested for candida...or is it an obvious "female" type infection?? I forget from your earlier posts. There is a link between oxalates and yeast...and some yeast/molds also produce oxalates. It seems to me that high oxalate foods can worsen the yeast situation for some people.

I'm not sure which comes first but if oxalates are a problem then yeast tends to go along with it. Some people have improvement with the yeasty symptoms when they go low-oxalate.

Unfortunately, until the drug is available there's no way to get oxalobactor formigenes. Its not available yet.

I think when it does become available its probabaly not going to be a "cure".....I think it will just help to reduce symptoms for those who are having problems with the oxalates. If this particular bacteria is wiped out....its also very likely that other beneficial bacteria are wiped out as well.....which means that there is a situation of dysbiosis and unwellness that will take some time to correct.

aint that the truth!

Yeah....let me just whip out my crystal ball and find out exactly when all this nightmare is gonna end.

The infection is beta strep B, which alot of pregnant women get, apparently... antibiotics can usually clear it up but it hasn't worked for me. of course... so they aren't treating it as an "infection" anymore.. more like a "condition" which is just depressing to me..

I'm really needing someone who has experience with the gut issues. I think thats probably the area that needs the most attention and so far it hasnt really been addressed.

Rachel, This is the main point you need to listen to. In my experience, Drs rarely get offended by multiple opinions, in fact it makes their jobs easier in most cases..cuz they have less work to do. especially in instances where there is a bit of mystery involved! and in this case, you aren't even looking for a SECOND opinion, you're looking for help on a different issue than has not been addressed so far. go for it. maybe tell the dr you're seeing first..

I agree with Rachel, get as much testing done as you can and present the facts to him. If you can find a good doctor who will do it that would even be better.

His Bi-Polar-ness might get better once his GI issues are resolved. Maybe you could do a "challenge" with him. Like challenge him to try it for 2 months and see how he feels.

bi-polar definitely has strong links to gluten. they did a test-study here in kalamazoo with like 20 people diagnosed BP and they went gluten free and were able to go off their meds and felt completely normal pretty amazing..

[dlp252]

I know you can be mischievious (I'm thinking about the picture of you with the birdcage) so hopefully you're not causing your mom too much trouble.

Not too much. I mentioned today again about getting my own mail and she nearly had a breakdown. She's afraid I'm going to fall.

Quick question. Looks like I'm going to try the Humaworm product that you all have spoken so glowingly of. I know that Carla and I think Donna at the least have tried it but don't remember who else has. Anyone had any adverse reactions or lost weight or anything from it?

I only had some mild issues in the very beginning. I hardly remember what they were now, so they weren't bad. I think I had a little reflux issues, but those went away. Other than that I had no adverse reactions and definitely no weight loss, lol.

Talking about my mold. I was so pissed off yesterday.

Aw Paula...it just keeps coming...I'm so sorry! Sorry about your step-son too!

Do any of you feel normal at times like your not sick but you are really toxic?

Oh yeah. I've felt toxic all this week from all the meds they gave me last week.

Well, it's not stressing me .... or hard to read .... it's just different .... I notice because of my ocd tendencies.

I hardly noticed...maybe not being around for a while before the change helped, lol.

Only problem is that he's in the same office as Dr. S.

I figure being a Gemini (twins) and all....one of my personalities can see Dr. S.....and the other (more dominant twin) will be seeing Dr. P.

Thats how I'm looking at it....but I was just worried about hurt feelings or something. I would hate for it to be taken in a bad way because I really do like the Dr.

Let me know how you like Dr. P if you decide to see him. I've actually been thinking about the same thing since my last appointment with Dr. S. He basically turned me loose anyway, so I've been thinking of finding someone who will be more involved as well. I need someone to do that for me...I can hardly remember anything these days, so I'm needing someone to take that interest. I still love Dr S, but think I need something a little more. In my case though I'm not sure I would continue with Dr. S if I could get what I need from someone else.

I'm really frustrated. I realized today that I'm really ready to move on in my life, and NOT be sick anymore! I want to get a job, I want to go off to college, I want to do all the "normal" teenage stuff, and it's not going to happen the "normal" way...AT ALL!

Perfectly normal and natural to be frustrated! Heck I feel that way NOW and I've had all my teenage years. I still feel like I'm missing out on life sometimes and it frustrates me because there is so much I want to do.

April,

Hope you get some clear answers re your daughter soon!

[Rachel--24]

Rachel-

Every time I have seen a new doctor, I have never regretted it...even if I don't continue with him or her, I have always gleaned information that has helped me continue to put the puzzle together...even if it is by virtue of the doctor recommending a therapy that DIDN'T help (or hurt like glutathione for instance), that in in itself was information.

This has been my experience exactly....I learn something from everyone I've seen.

Well...except for the conventional Dr.'s...all I really learned through that heinous experience is that they SUCK!!

[CarlaB]

Rachel, okay, no one else is saying it .... we've all gone to one hair dresser, then another in the same salon ... it NEVER works! ROFL. I would hope doctors would not look at it the same way as hair stylists.

[Rachel--24]

I'm really frustrated. I realized today that I'm really ready to move on in my life, and NOT be sick anymore! I want to get a job, I want to go off to college, I want to do all the "normal" teenage stuff, and it's not going to happen the "normal" way...AT ALL!

I didnt do things the "normal" way and I was a healthy teenager and yet I dont feel like I missed out on anything.

Now that I'm sick I do feel like I'm missing out on alot of things. I think its because we dont have the freedom to make choices. We're kind of held back from doing alot of the things we imagine ourselves doing.

Dont worry that you're missing out....you'll have plenty of time to make up for it later.

[CarlaB]

you'll have plenty of time to make up for it later.

Oh my, we'll have a totally wild Kassandra in medical school in just a few short years!!!! Watch out!

[Rachel--24]

I don't think I'd see Dr H if Lyme wasn't my main focus. He's a great Dr, but a great Lyme Dr. I don't think he does a lot of heavy metal type stuff. I could see going to him if I had lots of fatigue for example and didn't have Lyme, because he'd figure it out, but I don't think I'd go to him for the type of stuff you're trying to get answers to.

Again, he's an amazing Dr, but pretty specific to Lyme/co-infections and all the lovely complications that come with it.

Thanks Kassandra,

Thats pretty much what I was thinking too....just wanted to make sure I wasnt missing something.

I'm really wanting someone more like Amy....who's been working with autistic kids. Also, if this new Dr. does a little bit of muscle testing it'll work out better for me than my current Dr. He doesnt have that ability so he's kind of "stuck" when dealing with sensitive/reactive patients.

Ok....and as I was typing this I totally made up my mind and scheduled to see him next Wed.

I talked to one of the girls and she said that he does see alot of autistic kids and yes, he does do muscle testing. YAY!

I have to see him like I'm just brand new there....so its gonna be expensive for the first couple visits. I think its close to what I paid when I first saw Dr. S.....maybe a little bit more. At least this time I have alot of the most important tests out of the way (IgeneX, heavy metals and all of that).

[Rachel--24]

Oh my, we'll have a totally wild Kassandra in medical school in just a few short years!!!! Watch out!

I dont doubt it at all.

I think I'm gonna be pretty wild myself. Thats what I always say "Watch out cuz I gotta lot of making up to do pretty soon".

I dont think I'll be in medical school though.

I'll be signing up for Klinghardt's ART class or something.

[Rachel--24]

Rachel, okay, no one else is saying it .... we've all gone to one hair dresser, then another in the same salon ... it NEVER works! ROFL. I would hope doctors would not look at it the same way as hair stylists.

LOL...Carla...I guess I dont care about the hairdresser's feelings because I just go to "whoever".

I'll see every stylist in the place...I never gave it a second thought.

Same with the doctors at my HMO. By the time I was through with them they ALL knew who I was. I was not afraid to hurt anyone's feelings there....and I wasnt afraid to tell them that they sucked!

I just like Dr. S.....he definately has the knowledge about everything we've discussed here....whether its Lyme, yeast, metals, etc. He just doesnt have the ability to test me the way that Anna, Amy and Dr. M. were able to.....so I think he just leaves it all up to them because he doesnt want to guess at what will work for me.

Since he knew I was seeing them it was easy for him to kind of just go with whatever they think is best. Its not a bad thing....but since I cant see Amy all the time I need someone here who can test me and take a more active role.

[CarlaB]

LOL...Carla...I guess I dont care about the hairdresser's feelings because I just go to "whoever".

I'll see every stylist in the place...I never gave it a second thought.

I guess you're the same with doctors!!

Actually, my comment only makes sense if you always go to the same one, LOL. Since I highlight, I don't just take the luck of the draw.

[aprilh]

What is everyone's opinion on Enterolab's Gene testing?

I had my daughter tested in 2006 and it came back with HLA-DQ 3,1 (subtype 7,6).

Apparently this means that she doesn't have the celiac sprue gene but does have genes that predisposes to gluten sensitivity (from both parents). Since she has both genes for gluten sensitivity, then the immunologic senstivity may be more severe.

I'm not sure how accurate the Enterolab's means of testing is and haven't looked into it lately.

For those of you that were genetically tested, what lab testing did you use?

[dlp252]

For those of you that were genetically tested, what lab testing did you use?

I just used Enterolab. I think with the gene testing it's probably pretty accurate as far as what genes...I think the main question is how he applies that to what they mean. Does that make sense, lol. According to him, I have one of the main genes associated with Celiac and one gluten sensitivity gene.

[CarlaB]

but does have genes that predisposes to gluten sensitivity (from both parents). Since she has both genes for gluten sensitivity, then the immunologic senstivity may be more severe.

I think their gene test is pretty accurate ... BUT ..... they say that EVERYONE except DQ4 is gluten intolerant. DQ4 is ONLY found in Asia. So, what do they mean by "more severe"? More severe than who?

What they're saying is, some have celiac genes, the rest are gluten intolerant except for Asian .... more severe than Asians I guess?

[confused]

April,

Im taking charcoal for an binder. I took 3 this morning tho and i think it was too many for my body to handle lol

I also think the gene test is accutate with saying what genes we have.

Everyone,

I got a copy of my sons bloodwork. It has me a little confused. There are many numbers that are very close to the cut-off point. I also compared it to his cbc from last year and the numbers are nothing close to the same. I use to push so hard that it was celiac and now i dread it is something worse.

Donna,

It was nice to see you post. You better listen to your mom and do what she says lol

paula

[tabasco32]

I'm really frustrated. I realized today that I'm really ready to move on in my life, and NOT be sick anymore! I want to get a job, I want to go off to college, I want to do all the "normal" teenage stuff, and it's not going to happen the "normal" way...AT ALL!

Yup feeling the same. Move on with life, get a job and not be sick anymore. Want to go to college? Hum don't know about that one. I want my own family though and kids, maybe six like Carla.

Naahh maybe just adopting a few. I don't know if I want to labor any childs from myself into such a toxic world.

[tabasco32]

There was a time that everything bothered me for instance going to Home Depot would bother me because of all the chemicals in the products.

I use to work at Home Depot. In the outside chemical garden area. I bet that got me a little toxic too.

[CarlaB]

maybe six like Carla.

WooHoo!

[mftnchn]

I'm really frustrated. I realized today that I'm really ready to move on in my life, and NOT be sick anymore! I want to get a job, I want to go off to college, I want to do all the "normal" teenage stuff, and it's not going to happen the "normal" way...AT ALL!

I recently decided to drop out of High School and take my GED and when I'm up to it, go to community college and then transfer to a UC school (like UCLA, etc.) This is a huge realization because I was planning all along, whether in online school or not, to go to college and "go away" because I just assumed it would be fine. But as the time is getting closer (I'd have to apply in December) I realized that there is really just no way that this plan would work. I am too behind in 11th grade to be able to do all of that college stuff.

So I'm happy to have a plan that will work for me, but I'm really sad about all of it...missing out on graduating High School and getting my HS diploma....all that normal stuff that teens totally take for granted.

I know eventually I will get well, blah blah blah. I'm just sad and feel like a huge part of my life is gone and it's like "that ship has sailed" kind of thing (in terms of high school/college transitioning stuff.)

Kassandra, this is all very hard. Its not okay, in the sense that you should be out there doing all the normal things with all the other kids. Being frustrated, angry, and depressed about this loss is all pretty normal.

At the same time, you have shown a great strength of spirit while going through things most people are never called upon to do. So I think you are going to weather all of this, and turn the trial into treasure--in terms of character building.

We'll all be celebrating with you when you reach your milestones, even if it is on a different schedule than you thought it would be!

Sherry

[tabasco32]

WooHoo!

I know, you can't help it your such a sex godess.

Hey I can't find the log out button and it's driving me batty.

[CarlaB]

LOL!

The log out button is on the left side of the page, right after where it says "Logged in as:"

[confused]

Does anyone know anything about the EOSIN in the cbc. I just looked at my sons was at an 1 last year and now its at 6.8 and the cut off point is 7. That just seems to close to me. I found something talking about parasites.

paula