dlp252

And part 2:

I know Donna isn't! LOL

So very true.

Also, I am going to start taking charcoal because I think it's important to get the toxic stuff out of my body. I will also experiment with lemon water and the baths. I used to take epsom salt baths all the time when I was little, but they started to make me feel worse, so I stopped taking them. I wonder if they were just too strong for my body...how much do you all put in your baths?

I put in much less than Carla does...I put probably between 1/2 cup and 1 cup of epsom salts and less than that of baking soda. If I put more than that I can't stay in any longer than 10 minutes or so.

I was thinking today about how sick I was last Thanksgiving .... such an improvement. I still didn't know I had Lyme at that point ... I found out Dec. 6th, so I must have taken the IGeneX test and have been waiting on the results.

Me too. I've had a few people now mention how much better I am than last year. I was really sick around this time, but I hadn't even considered the possibility of lyme at this point last year.

You guys are wonderful, and so kind. I just wish I had found this place sooner.

Glad you found us too!

I don't see that it would hurt.....it's only for a month and then you could take a break until some future time. At least you could clear out some of these guys.

I agree.

Quick update from Charlie.

I'd love to have the update.

The abx are making me feel terrible. I am unlike Carla, usually when I'm not online, I am really feeling terrible...no strength to get up and go on the computer.

Me too...I can't sit up at the computer when I feel bad.

Ok so I am thiking alot about the humaworm. I sent the info to my doctor and he thought it looked like a really good product. I know it has alot of ingredients and that makes me alittle nervous but i also know i am very uncomfortable and I know parasites and worms are a big issue for me- it is only for a month and it might just be worth me giving it a shot. I am very curious about your guys opinions.

I wish your Thanksgiving had been better. They can make the humaworm without any of the ingredients you know you'd react to. I had them leave out the sage. I have an environmental allergy to sage, and didn't want to take a chance on cross-reacting by eating it. I think sage came up on the BioSET testing too, so I did have some sort of sensitivity to the dietary side as well.

I just ordered my Humaworm I also ordered some chlorella from Dr. Mercola's site. So we'll see how well I tolerate it.

Mine just came today...I bought extra chlorella this week and also some charcoal. Now I just have to decide if I want to wait to start it until after I do my neurotransmitter testing, lol.

Hellow all! Sorry I've been missing in action...didn't realize how long it'd been since I'd posted. I've been REALLY tired the last couple of days so didn't even turn the computer on. I DID manage to straighten up my livingroom. Next is the spare bedroom so I can sleep in there from time to time if necessary.

Thanksgiving was good. We had cornish game hens, and I even ate a little yam without issue, lol. I also took my own PUMPKIN PIE!!! I found the bigger tarts at Whole Foods so I've bought THREE!! They are nicely frozen in individual pieces in my freezer and I've been having some for breakfast every day this week, and so far no issues. They are by Crave and are Wheat, Gluten, Dairy and Soy free.

We had a small gathering, just my mom and aunt, and my cousin and her husband. The husband was hoping we were having pasta for dinner, lol, so for Christmas that's what we're having. My mom was asking that she could make for me and I told her I'd just bring my own stuff. I've got the Tinkyada pasta so I'l just take a little bit of that.

Had another BioSET appointment today. Today was pesticides and herbicides--all the lovely stuff they put on our produce. As expected I reacted to a BUNCH of them and they were affecting everything...so much in fact, that my brain couldn't handle it all, so she had to find some "good stuff" to add in. I have one more appointment scheduled for next week...I'm hoping that will be the miasms. If I need more appointments I'll schedule them in January...don't think I want to fight with Christmas shoppers for parking, lol.

She wants me to retest neurotransmitters, but it's a different test than the HN doctors want me to do. I'm just trying to decide if I want to do them both. The one from HN is a neuroadrenal test and the one from BioSET is a neurobalance test. I think they'd both be good.

Hello Nyxie, welcom!

Question: how long it taking from order to arrival of the Humaworm? Thinking about when I should try to get some.

I think mine took about a week and a half or two weeks at the most....mine was in my mail box today (but I haven't checked the mailbox since Wednesday).

You mean you would not do e-coffee even if it was pink? Pink coffee no matter where you put it would be cool! If it had dye, I would just break out in a rash. Stupid dyes! You know they put blue food dye in marshmallows? WTH? They are white, not blue!

No not even for pink. I can think of one place to put it that would NOT be cool...that's one reason why I haven't tried it yet.

My LLMD asks in percentages so we have a more objective measure of how I'm doing. I think it gives a better idea even on here .... so if I say I'm feeling good and I'm 75%, it's different than feeling really good and 95%. Bad is relative, too .... sometimes a herx makes me feel as bad as 40% .... but in the beginning 25% was a good day.

Yep, mine too. He was ecstatic last time I saw him and said I was about 50-60%. I'm actually feeling even better than that now, so maybe I'll get to see him dance.

Wow....all of you guys have been a part of my life for so long now. We truelly "know" each other...or at least it feels that way to me.

I am soooooo very thankful for everyone here.

You guys mean so much to me and I just wanna tell everyone (once again) how thankful I am to have all of you as friends.

Ditto!!!!

My Humaworm shipped, my Humaworm shipped, lol! :lol: Yesterday...guess I'll have it in plenty of time to start before Christmas.

I forgot to mention earlier that I had a dream last night that I got layed off at work. Not saying my dreams come true or anything though.

"I wanted to call to give you the test results and so that you don't think that I think you are crazy. I think you should got to BI because they have a world renounce celiac center, and you probably have some IBS/IBD but we can talk about that at your follow-up."

1. WHO THE HELL SAYS SOMETHING LIKE THAT

2. My follow-up is in January, so what am I suppose to do, stew till then?

3. She never mentioned/responded to my call last week about rectal bleeding

I don't think I could hate this woman more, but oh wait, I now do.

I have an appointment with my PC today. It will be a very thankful Thanksgiving if I can get rid of this heart monitor.

Well, hope you get good news about getting rid of the monitor! Yeah, I wouldn't do well waiting until January for a followup, lol, especially with the bleeding! The other stuff...well, at least it's encouraging that she thinks you COULD have celiac and sounds like at least she knows that IBS is caused by SOMETHING, lol.

Happy Thanksgiving to all.

Happy Thanksgiving!!

What is a mail in program?

It's where you mail your prescription in directly to the insurance company's "pharmacy" and by doing so, you get more pills for your money so to speak. It's either a direct savings of cost for the same amount of pills or more pills for the same money. I'm not sure that all insurance companies have this type of thing though. I have Cigna and they have this program.

What I am doing is crushing a clove and then chopping it, and just swallowing it with water like pills, morning and evening. I am not going to chew this!!!!

My doctor had suggested this anyway awhile back, so I figure it won't hurt to try. I was worried my stomach wouldn't take it but so far so good.

Good luck with THAT, lol. Just the idea of it makes my throat burn.

So my mom used some clorox cleaning wipes in the downstairs bathroom, and it is close to the living room...and OMG! I think that stuff is severely toxic for me!! I have a headache, my eyes are burning and I feel yucky! Wow, that's crazy! Does anyone else react to cleaning stuff?

Yes! I'm not sensitive in the same way Rachel is but I can't be around it anymore. While I get some mild immediate reactions like burning eyes and nose, my worst reactiona are almost always delayed.

One of my co-workers was sick and another decided to spray the room with Lysol...I had been out of the room, and when I came back in, I reacted immediately and had to leave again. The wipes aren't as bad for me for some reason.

I was wondering, if allergy shots come from a multi-use vial, is it possible that they are preserved with thimerosal???? Thimerosal is gluten-free, but it is 50% mercury, a known neurotoxin, and if you have any kind of leaky gut condition, it will cause major problems for you....

I know that this is the specific reason I asked about my shots...I was mostly concerned about the thimerosal issue. In my case they said it was only saline, but I don't have a lot of confidence in what they tell me there, lol.

This may sound extreme but have you thought of dropping the allergy therapy for a time? I had standard allergy testing by an MD right before diagnosis. I showed up allergic to almost 100 substances, everything tested for except beech trees caused a reaction. Within 6 months gluten free those allergies were gone, they were caused according to my doctor by my immune system being in overdrive due to the celiac. He would NOT give me anything for them, no allergy therapy of any kind because he felt the tests were a 'false positive' because of the immune system issues from celiac. I am wondering if your allergies have the same root cause. The surest way to know for sure that the sublinguals are a problems is to stop them for a month or two and then if needed restart the therapy, that will make it clear if the sublingual therapy is causing problems. Many doctors are not at all familiar with the autoimmune response that comes with celiac and falsely think that a small amount of casien, soy or gluten will not harm us. I became severely ill when a naturopathic doctor prescribed stuff with this mindset.

Yes, after 3 years of allergy shots and not seeing improvement until after I went gluten free (but continuing the shots for 2 more years) I am testing this now. My doctor finally agreed that a trial period without the shots would be a good idea. It was coming down to where I was only reacting when I got the shots, so it appears that my "allergies" were caused by one of my other conditions and now that those conditions are being addressed my body is able to do what it is supposed to.

And, you might check into whether or not your insurance has a mail in program. Mine does...I don't use it, but my co-worker (who has more medical issues than I do, lol) uses it all the time for all her various meds. Anyway, the mail in program usually gives you a longer supply...I'm not sure about the cost, but I think it might be for the same amount of money...I'll have to double check though.

Make sure you all read the captions and whatnot...makes it even more cute.

Donna - why did you have to tell me about that website.......holy cow - TONS of cute kitties etc. on there - another vortex

Just doing my job ma'am...it's my job to get people sucked into vortexes of various kinds.

I can't say specifically about the kind you are receiving, but I asked my allergy nurse what was in the allergy shots I was receiving and she said it was in a saline only solution...but I'd take that with a grain of salt, lol.

One of my favorite websites (away from here, lol) is www.cuteoverload.com

They have tons of videos and pictures like these.

My 3-day stool test was with Doctor's Data (the last one at least...the one last year I think might have been the same place...not sure).

Happy Thanksgiving Julie, and to everyone else who may not be on much in the next day or two.

I am so glad this forum is here...otherwise I;d be pretty lonely these days...lol! I am glad you all believe in me!

Now, if only I could get my mom on board.

I'm glad you're finding some comfort here. I think your mom will come around...I seem to remember Rachel saying that her mom (hi Cheryl, lol) did not always "believe" in the less mainstream stuff, but now sees the improvement and is fully on board.

Am I wrong, but LLMDs treat more than just lyme, right?? If you end up getting a negative result all would not be lost if it's someone who will help you.

No you are not wrong. An LLMD is a medical doctor whose specialty is lyme. However, I think that most of the people who have seen an LLMD on this thread have had their LLMDs test for a BUNCH of other stuff as well as lyme. They seem to be really interested in finding out the cause of your symptoms whether or not it is lyme. My doctor was almost shocked that I DID have lyme, lol...I think he was truly expecting it to be something else.

Happy Thanksgiving everyone! I get to not slave over a hot stove because I have a lady who cooks for me, who is so very very sharp she has learned all of my holiday cooking recipes. She had never cooked anything western before working for me, but has picked it up really fast. She has now taken all the gluten-free cooking in stride as well and makes everything for me. So I do the planning but am very very blessed to have her help. I am inviting a young person here from the USA who is celiac, just met her recently.

Can you say JEALOUS, lol!

For the past 2 weeks I have not gotten the glutathione. And there is a huge improvement in how i feel after chelation. My doctor said it is alright that i am not getting it right now.

Ok that is a short update i know there is more but i just wanted to check in I miss you guys and felt weird that i haden't posted in so long.

Don't worry about posting...just glad to hear from you when you can! I'm glad you are feeling better without the glutathione!

Kassandra - great news on the friends...it really helps to have people support you in whatever way they can.

I agree, Donna is a little too strongly rejecting the ecoffee .... sounds a lot like you and the pink! When someone says "never", it eventually happens.

Ah, but I didn't say NEVER, lol! I just said it's not likely any time soon.

Have you moved into your spare bedroom yet? Try some meds for you carpet or get it replaced?

You sound like you have pretty good massages most of the time. How nice. How'd the bath go? I thought those knocked you out after 10 minutes or so?

Any news on miasms with BioSET?

Nothing. Done absolutely nothing. I am lazy even when it comes to my health. Honestly the thought of cleaning my spare room of all the junk is almost as daunting as thinking about ridding my whole house of it.

The bath knocked me out, but at least it wasn't too bad this time. I didn't get shakey, lol. I followed it with a cool shower, so maybe that helped.

Nothing on the miasms yet. I reminded Anna and she just said "yeah". So maybe next time.

Hello everyone! Had another BioSET appointment yesterday...we did contactants and household allergens. Once again I had a full glass, lol. Not much to report about all that though.

I had a 1 hour massage after that and had a new girl. She was GOOD! She really spent a lot of time on my neck and shoulders...a lot of time. Everyone else just says, "wow, your neck is really tight", and they work on it, but this girl really worked on it. I came home and took a really long epsom salt and baking soda bath.

Rachel - Thanks for the update and the info. Can I just say on the info you posted!! Wow! No wonder my lymphocytes were so low on my physical last year. It will be interesting to see if that comes up and maybe if my C.D57 score comes up too.

Kassandra - I take melatonin and 5-HTP for my insomnia. Since I had my neurotransmitters tested, and know exactly what's out of kilter, I'm taking more melatonin. I also do take magnesium in the evening. Since I've been doing the supplement treatment for the neurotransmitters I've been sleeping a bit better. The melatonin/5-HTP combo seemed to help the most before though.

Nancy - hello and welcome!

Well, I am never going to be able to look at rice the same way again, now! I am suprised that you broke down and ordered the Humaworm! This is interesting. Who would have thought? The next thing you know, you will be doing e-coffee! It is like Rachel and pink!

Glad to have helped out with THAT picture, lol. Um, nope I don't think you'll be seeing e-coffee in this household anytime soon. e-coffee pink, pink e-coffee...just doesn't have the same umpf to it.

I have always been a well-done sort of girl! I never would eat meat that is pink inside. I am much too afraid of E. Coli, Salmonella, and other scary things. You guys live on the edge! My uncle likes his steaks practically raw, but my father is preferred medium rare at least.

You'll be happy to know that I had my steak barely noticably pink yesterday, lol.

Donna, my lyme results aren't Igenex, they were from Bowen, so won't be the same. I can try to find the last one if you want.

It would be interesting to see the bands they test for, but yeah, won't be the same I think.

YUCK !!!!!!!!!!!!!!!!!!

Morgan, I was wondering if you want me to buy you some, too.

this just all struck me funny, lol.

I will keep everyone updated about the GI appt. and the IV's. Hope everyone has had a great weekend!!

Have a great appointment! Can't wait to hear about it!

Thanks! I was feelng the best I felt for years until I had to take the Tindamax .... now I feel like garbage again. I take it for a week, then I'm off it for a couple weeks. I know it's a part of what I have to do, but I don't have to like it.

Yeah, I'm almost certain I have some sort of parasite. My bowels are always really noisy, and it's especially appearant when I get my massages...as soon as I lay flat on my back the noise really gets loud. Doesn't matter if I'm hungry or not. And, that's another thing...you mentioned that you're eating normal for your size...see, I'm hoping that will happen for me too.

I can eat a huge steak and tons of veggies and still feel hungry! I am hungry all the time! My friends joke about my eating...I'm about 12 pounds overweight right now (thanks to those stupid cookies in August and my vacation), but before the cookies, I could eat a ton of food (not sweets, that'll make me gain) and not gain. I've never been underweight like some of you though.

A quick question here about Lyme expenses.

We are having to choose new insurance. My question is how much should I expect to pay out of pocket for treatment? per year?

Would treatment be covered with a indemnity plan where I have like a 2500 dollar deductable before they cover in full? not sure if this question makes sense?

I guess what I'm asking is will it cost more than 2500 the first year?

Does a LLMD have the ability to diagnose?

So confused with all this.

FYI, I will most likely be seeing Dr. P in NY does anyone here use him/her?

Thanks,

Laurie

Most LLMDs are considered "out of network". They do that on purpose so that they are not controlled by the insurance companies. My insurance plan at work pays for 70% of out of network charges. So 70% of my costs for the doctor's appointments are covered. I pay the 30%. That's after I satisfy whatever deductible I have. Last year my deductibles were $500 for in network and $1,000 for out of network, so I'd have to pay all of that out of my pocket. Most insurances cover at least a portion of any prescribed meds. What is probably almost never covered would be any supplements the doctor would put you on. Those can add up. My supplements are my single most costly item I think.

Some of the labwork is covered 100%, some not. All of my Igenix western blot tests were covered.

Because the doctor is out of network, I have to pay him up front, then submit the claim to my insurance company for reimbursement.

Your LLMD will be able to diagnose...they are medical doctors and are able to prescribe and diagnose just about anything any other MD would.

I know Carla's doctor is in NY but not sure if that is him. I'm in California so can't help you with that.

Happy Birthday Sherry!!!

Wow, new colors...not saying I don't like them...just WOW, my eyes need to adjust, lol.

This just struck me as funny.

Yeah, every time I type the stupid thing it comes out humanworm first.

Seriously, though, I am feeling less bloated ... I'm wondering if that's a side effect .... of course it could be a side effect of other parasites, too.

I'm hoping this will clear up. The bloating seems to always be there no matter what I do.

Is anyone going to cheat and eat pumpkin pie, or a roll, or mash potatoes with gravy? If you do cheat for me too o.k.?

Whole Foods has a gluten-free pie, and you'd better believe that if I can find it I'm going to buy and eat it.

(And then I'll be taking extra yeast killers, lol).

Jin is a maybe for Lyme as well.

Yes, I think the number will rise once everyone is tested or diagnosed. I'm tending to think MANY more here actually have it than just those who have been tested.

I just find it so amazing that there are so many of us here. Dumbfounded, awestruck and befuddled in San Jose, lol. I'd never really thought about how many there were in actual numbers before.

I've never liked meat rare. I always liked it medium-well done. My parents always cooked flank steak to a medium-rare though I think. Still pink inside.

Mine is sometimes RED in the middle!

Does anyone have a count of how many positives, on this thread, there are now?

I have positive test for 9 people who have posted on this thread. 10 if one includes Chloe. That's Rachel, Laura, Charlie, Bev, Mia, Carla, Truthsearcher, you and me. Oh yes, and Sherry...I don't have Sherry's tests on my sheet, so that's 11.

I ordered the Humaworm. I emailed them as well because I want to see if they can leave the sage out. I have an environmental allergy, but not sure ingesting it is a problem, but if they can leave it out so much the better.

I always eat my steaks rare...sometimes really rare. My friends always joke with our waiters that they just need to wave it over the grill, lol. Guess I'll have to make some adjustments. Living in Hawaii for 6 years I ate a TON of sushi and sashimi and that continued for quite a few years after I moved back here. And, of course, I've traveled quite a bit, so there's that little thing.

Chocolate in the office......that would be hard except that I avoid soy lecithin too.

Well, yeah...I'm supposed to be avoiding dairy too, but it's not stopping me.

Oh Ami, I'm so very sorry!!! Of course it's okay to share here! I wish I could give you an in person hug though!

Donna, it is REALLY freaking me out! I mean, people joke about me having a tapeworm because I can eat so much and am so thin, but to really have one? I've seen over 3 feet of it .... and who knows how much was more hidden? Or is still to be seen?

White things that look like rice can also be a tapeworm of a different variety than I'm seeing.

Yeah, that's what it looks like, rice. I've seen it from time to time, but haven't in quite a while now, then today WHAM. Lots of it. Okay, I may have to look at the humaworm I guess, lol.

I haven't regurgitated in 5 days!!

The heart monitor is the biggest pain in the butt. I cannot wait to get rid of this stupid thing.

Someone actually came out of their office and asked if a fire alarm was going off, while I was transmitting a recording. "no ma'am, thats just my heart"

I have a few more foods under my belt, literally.

More tired, more dizzy, but oddly more energy from time to time.

Had blood drawn for DNA testing (through promethus) Will have results in 3-4 weeks.

Next dr. appt the day before Thanksgiving at 4:45pm - I am not going home for the holidays now, but perhaps its for the best.

Great news on the regurtitation!

Too funny about the fire alarm thing, lol.!

I had the same thing happen with the dizzy and tired, but also more energy from time to time...that was when I first started to heal I think. Now I have many more good days than bad.

Donna, I don't know how I missed the chocolate thing yesterday I kept going back looking for your post about it and couldn't find it....

I was going to say, Chocolate is a drug! A very naughty addictive drug, that is hard to kick

Ha, I kind of sneaked it in there.

OMGosh! This cough has me sounding like a smoker! I hope I don't cough up a lung ... or a tapeworm! Saw more of it today ....

Ewwwww! This would freak me out I think. I just saw a bunch of white things and I'm not sure what that's all about, but I'm not taking anything that would cause that affect, so not sure exactly what's going on.

We also had a Jane Austen-style ball, and saw the GI specialist today. That appointment was horrid. Within 5 min, Mom and the Dr. were in the middle of a major power struggle, and it was just awful. I told Mom way back when she made an appointment that seeing the Dr would be pointless, and it was doubly so since the GI knew nothing about Celiac, ignored everything we said about allergies (apparently allergies don't effect the GI system at all ), and then Mom had to bring up Lyme! So I have an endoscopy scheduled with a different Dr. in the practice to get a biopsy for celiac (which is pointless, utterly pointless) and (hopefully) for the strictures in my throat (which she said weren't strictures at all, but spasms from acid... which I'm not really buying for many reasons). And the Dr. was very insistent that I go on meds for acid reflux, as well as extremely rude. I'm not sure who fired who first, us or the dr!

I am NOT going to do them without a PICC or central line! I will put my foot down. I already have a huge bruise on my arm from the blood draw 2 days ago!

Ugggg...stupid doctors!

Chocolate is a difficult one to get off of. I haven't been buying it lately.

Yep, and I'm not even buying it, lol. One of the pitfalls of working in a large office...everyone has candy on their desks around holidays like Halloween, Christmas, Valentines day, etc. Can't avoid it, and unfortunately there's something DRIVING the binging...can't figure out if it's mental (I'm always mental anyway ) or if it's deficiencies of some sort. I started taking extra magnesium just in case. I'm supposed to be taking at least 500mg every day anyway and I haven't been, so I was hoping that was it.

The phone consult went well. Dr. E is sending us a mineral taste testing kit for all of us to use. She wasn't too sure about Seth but said we could watch his facial expressions.

I'm to try Micah and Talitha on the chlorella and see how they do. I'm hoping that at least Talitha will be ok with it because that would help us out a lot. Her modifilan only last about 22 days whereas the chlorella would last her 60 and cost about the same. She also wants Mitch and I to stay on it and the adrenal support we are on.....which we had stopped. With canceling our insurance it will give us a little bit of money but I'm hoping to primarily have that to pay down one of our credit cards quickly. Time will tell whether that will pan out or not. With all of us taking chlorella, if it works out that way, it would mean 3 bottles a month.

Oh, really hoping the chlorella works well for all!

So I'm sitting here "writing a paper".... you can tell I'm getting far can't you? lol Anyways, I thought of how long it's been since I stopped by. Umm that amount of time = a long time.

SO HELLO EVERYONE!!!! I hope everyone is doing well

Hi Morgan, nice to see you again!

Happy Birthday!!!!