Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Rachel--24 Collaborator
I had a lousy Thanksgiving. The lactose must have hurt me from the condensed milk in the gluten-free pumpkin pies I made. After eating two slices, my stomach promptly tried to throw them up! :(

Awww Jin...sorry to hear the pie got you sick. :(

So.... the only drawback (other than the gross-out factor) of Humaworm is that parasites hold onto mercury? So if you have a high mercury burden... when the parasites die, they release the mercury? So you have to take a binder to cling to the mercury? Then what, to get rid of the mercury? Also, is there any at-home way to tell if you have a high mercury burden?

Unfortunately there is no easy way to determine mercury toxicity. Its always good to take binders when killing *any* bugs....especially yeast (which has the highest ability to absorb metals).

Some binders include:

Activated Charcoal (taken away from food & supplements)

Chlorella

Modifilan

Apple Pectin

Cholestyramine

Fiber (non-psyllium)

Butyrate

Bentonite

You need to have regular bm's to excrete the mercury....also drink lots of water. Constipation is not good when trying to eliminate toxins....they will end up recirculating.

Well, my neck is only getting worse. Now I can't move it at all!! I took another bath, but I couldn't stay in long because it was really uncomfortable with my neck so stiff!!!!

For me stiff neck is always a result of toxins building up. It could be from chemicals, foods, antimicrobials, antifungals, mercury detox, etc...anything that increases the toxic load makes my neck stiff. Since you're on abx...my guess is that you have toxins circulating. Drink LOTS of water, take a binder, be diligent with your diet and get lots of rest. The baths will help....sweating will help.

I dont think you would have problems with caffeine from the ecoffee...I never did and I *do* have major problems with caffeine. If you do try it I would recommend starting at a very small dose of coffee...less than one tablespoon and increase gradually. Thats what my Dr. had me do.

Okay, started my Humaworm today, lol.

OK....are me and Mia the only ones not participating in the Humaworm craze?? :lol:

I seriously doubt my body would want anything to do with that many herbs...I think it might kill me. Oh yeah....this is totally different from saying that my body wants nothing to do with "pink"....I think this could really do me in. :P

I think I will leave it alone for now....I'll see what Amy says about the parasites when I see her.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
Everyone,

This is a fascinating thread. Learning lots! Thank you all so much for sharing your personal experiences and information. Since I'm kind of on hold right now, don't really have a whole lot to contribute. Will probably ghost here for awhile until something gets moving on my end.

Like everyone said...dont feel like you need to contribute scientificness to post...we're a chatty bunch. :)

I never want to see you again. I hate doctors. Lets work on me not having to see you anymore. Okay?!"

:lol::lol:

I LOVE that!! :D

Andrea, Capra Mineral Whey is really good stuff, I wonder if it would be more economical and stretch further with the family.

I second the Mt Capra Minerals. :)

Rachel--24 Collaborator
Good Morning Baltimore!!

Sorry, I have songs stuck in my head from watching Hairspray the last 2 days with my nieces :lol::lol:

:lol::lol:

HEY PEEP!! :D

Good to see you. There was a customer at my work who was wearing a t-shirt which read "My Peeps". Below that it had 3 peeps lined up....little yellow chicks (like easter peeps). They each had gold chains around their necks with sideways baseball caps on. I thought it was the cutest thing...and I told him so. :D

confusedks Enthusiast

Everyone,

So I officially signed out of my school...aww. It was so sad. :( My mom started to cry... Ugh. I guess I am doing the best thing for me. :wacko:

I also had the blood drawn and I think I am getting phlebitis because my arm is really swollen!! UGH! I am going to go put heat on it so i can hopefully prevent a terrible case of phlebitis.

I want to do the Humaworm thing, but I want to finish what I'm doing right now. I will also talk to the LLMD about it. I am hoping I have a turn around soon with my supposed SBBO treatment because I feel awful still. If this doesn't help (which I don't think it will) I can't wait to talk to the dr. and tell her her stupid theory was WRONG!! LOL!

Kristina,

I love what you said to the doctor!!! I wish my mom had the courage to do that...it's probably a good thing I don't talk to them...they would HATE me!! :lol:

Kassandra

dlp252 Apprentice

Sorry about the arm Kassandra! Hope the swelling goes down!

~~~

Guess, the humaworm is really good for cleaning one out. :lol: :lol: Just needed to make a dash for the restroom. :lol:

Ugg, my friend is going on a cruise WITHOUT me! The nerve of it! She had the audacity to ask her MOM to go. I mean really. :lol::lol:

melmak5 Contributor

Kassandra - it is your body, speak up if you feel like it

Its scary but refreshing to know that doctors are humans, nearly all of us are PROOF that they make mistakes and don't know it all.

Rachel--24 Collaborator
Ugg, my friend is going on a cruise WITHOUT me! The nerve of it! She had the audacity to ask her MOM to go. I mean really. :lol::lol:

Already...another cruise?? And without YOU?? :o

I cant believe it either...the nerve!! :P


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mftnchn Explorer

I am wondering why not psyllium for a binder for mercury?

Okay I have a problem, any suggestions on this?

I have a condition called palmar faciitis [dupuytrans] and plantar faciitis (one is in the palms and the other on the soles of the feet). It started in 2000. Not much is known about it, but it is associated with northern European ancestry, diabetes and alcoholism. I don

CarlaB Enthusiast

Gosh, Sherry, I don't .... could it in any way be related to the die-off? Could it be a Herxheimer Reaction where it's actually getting better not worse? (We can hope!)

confusedks Enthusiast

Sherry,

I have no idea. I hope it gets better soon for you though. :(

Everyone/anyone,

How on earth do you find anything on Mercola's website? I typed in Lyme and I couldn't figure out how to get from the topic to the actual info. Any ideas?

Kassandra

mftnchn Explorer
Gosh, Sherry, I don't .... could it in any way be related to the die-off? Could it be a Herxheimer Reaction where it's actually getting better not worse? (We can hope!)

I haven't really noticed it before associated with a herx, but I am all for improvement. I don't know. Its the good hand right now.

ShadowSwallow Newbie

Hello Everyone,

I spent 6hrs out on Saturday and 3hrs out on Sunday, and I am completely wiped out. :( So just a flyby post for now.

Rachel,

I've been tested for the metals and parasites using TBM (kinesthesiology). The only things I can come up with are either my body doesn't want to deal with them now, or I could have a toxic burden of pesticides/chemicals. We live around a lot of farms and drank our (filtered) well water for years, until we discovered it killed off potted plants. :ph34r: We still shower in it, though, and are starting to stray from our organic diet. Not something I'm very happy about that. :(

Rachel--24 Collaborator
Rachel,

I've been tested for the metals and parasites using TBM (kinesthesiology). The only things I can come up with are either my body doesn't want to deal with them now, or I could have a toxic burden of pesticides/chemicals.

With this type of testing the body will reveal things in layers...according to what needs to be addressed at that moment in time. If metals are at the root of the problem and other things have piled on top of that as a result of impaired detoxification...the metals may be hidden behind other layers.

Our bodies wont reveal every problem at once with muscle testing...its a process. This is also true with conventional tests. For example a person has Lyme and a few coinfections. Those coinfections may not show up in bloodwork at all. After the person has done some detoxing as well as treatment for Lyme...its not uncommon for coinfections to begin testing positive. You treat one thing and then another one comes to the surface.

These things hide behind each other in chronic illness...its multi-factorial. When the immune system is overwhelmed by so many things it cant effectively fight everything at once...so some things will not show up until the immune system is less burdened.

Also, if you have blocked regulation during kinesiology....you will not get accurate results. Regulation can be blocked by many factors and the tester should check to be sure its "open" throughout testing.

Having said that...when it comes to heavy metals I would not rule out the possibility without having been tested in other ways in addition to kinesiology. In my first ART session (ART is claimed to be the most accurate form of muscle testing) Lyme was not showing up at all. The person testing me checked, rechecked and then checked again...in every way he knew how to check. It was not showing up clearly at all.

In my next session my Dr. was able to locate Lyme....it was not easily picked up and it was only present in my head...the same area that is highly toxic with mercury, fungus and other toxins.

Since candida is very much associated with mercury toxicity...as is leaky gut, food intolerance and environmental sensitivities....I think it would be worth it to look deeper into that. If you have Lyme along with the candida/leaky gut...you can be fairly certain heavy metals are a problem to some degree. Its part of the chronic lyme picture.

Parasites have not really shown up yet in Kinesiology or ART...but my Dr.'s are certain they are there. I have significant gut problems as well as a heavy burden of mercury/yeast in the gut. I have not started treatment specifically for parasites yet. I take Cowden herbs which have antimicrobial, antiparasitic, antiviral and antifungal properties. They are multipurpose herbs. :)

Sorry you got wiped out but hopefully you had an enjoyable time. :)

I was out for hours at the mall Friday and Sat. .....I cant believe I ventured out on Black Friday!! :blink:

Luckily, I dont get wiped out too easily but the perfumes and all that smelly stuff everywhere does get to me after awhile. I start getting burning on my face and brainfog if I stay around it too long. :(

ShadowSwallow Newbie

Thank you so much for that explination, Rachel! It makes much more sense now. :)

The weekend was very fun, I spent it all with friends, and I'm almost certain it was worth it. :D

I know what you mean about the perfume. :blink: Macy's is the worst store since its perfume section is right there at the front! I always seem to get caught behind a stroller when sprinting through there holding my breath. :rolleyes: I hope your trip was a successful one. :D

dlp252 Apprentice
Already...another cruise?? And without YOU?? :o

I cant believe it either...the nerve!! :P

I know!!! Just tragic! :(:lol: There is a SMALL possibility that I could still get to go though. My friend HATES to fly, but her mom HATES it 10 times more. Last year my friend booked a cruise with her mom and her mom backed out. I was too sick to go then, so she had to cancel, but I'm not sick THIS year, lol. I do think that my friend almost has her convinced...it's only an hour flight, so I'm hoping she'll do. Her mom needs a vacation. :P

Well today (after 3 days of pineapple, etc.), I woke up to my left palm, actually almost the whole hand, hot, red and very very itchy. This is the worst I have ever seen it. I can hardly tolerate wearing my wedding ring even.

So I am now wondering, what triggered this??? If anything I am having candida die-off not growth.

Could this be related to mercury, parasites, the pineapple?

I tried google but there just isn

dlp252 Apprentice

Okay, so my first day of Humaworm is now done, lol.

I felt really pretty good all day...just the one "have to hustle" trip to the bathroom after the first dose, and the whatever it was that was in the stool. I also noticed my nose was runny today.

So now after the second dose, I've noticed that my shoulders and neck are achy...I almost thought it was from the weight workout I did, but I used light weights because of my PT/Chiropractic restrictions, and I've done this workout several times recently so it isn't that I'm using muscles I'm not used to using, so now I'm thinking it's from the humaworm. So, I know that this together with the runny nose thing sounds like I'm getting sick, but I don't feel sick at all and I"m not wiped out like I should be if I were getting sick.

Carla, I can't remember what your humaworm symptoms were...I'll look tomorrow when I get to work, but I know you and Adam both felt bad on the first day, did that include achiness?

aprilh Apprentice
How on earth do you find anything on Mercola's website? I typed in Lyme and I couldn't figure out how to get from the topic to the actual info. Any ideas?

Kassandra

When you type in lyme and click search. There is an option to search mercola.com or google.com. Then all of these webpages come up - looks sort of like when you do a google search. Then just click on each link and that will take you to an article. If its not the one you want go Back and go to the next one.

Here's a few....

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Hope this helps! :)

aprilh Apprentice
For women, Dr. Barkley has found that testing around the time of menses increases the probability of discovering the presence of Bb. "Women with Lyme have an exacerbation of their symptoms around menses," she explains.

"The decline of both estrogen and progesterone at the end of the menstrual cycle is associated with the worsening of the patient's Lyme symptoms."

This is an interesting quote from one of those Lyme articles i just posted from Mercola. Have any of you found this to be true?

CarlaB Enthusiast

I thought I was getting a head cold .... I had the aches and the runny nose. Adam felt like he had a hangover.

It sounds like your symptoms are almost like mine. I still have a cough .... so maybe it is a cold ... but maybe I'm just "detoxing" from the stirred up toxins ... who knows. I was a wiped out, too. I spent most of the day lying around in bed. :)

We had also just returned from Florida, so some of the wiped out feeling could have just been Lyme fatigue. I'm kind of wiped out today from the weekend. Not lying in bed wiped out, just tired.

The achiness sounds just like how I feel from the Lyme .... I try to do a back/chest workout day when my back hurts like that ... I figure the bugs are causing the ache, so I may as well really get them mad!

CarlaB Enthusiast
This is an interesting quote from one of those Lyme articles i just posted from Mercola. Have any of you found this to be true?

My LLMD has found this to be true ... he was surprised that my herx cycle did not coincide with my menstrual cycle. My herx cycle is 21-24 days .... so it has no correlation whatsoever. I guess it normally does.

aprilh Apprentice

So good timing for testing might be around the menstrual cycle?

CarlaB Enthusiast
So good timing for testing might be around the menstrual cycle?

I think that is the case .... I KNOW they say something in relation to the menstrual cycle and testing, but I can't remember if it's before, during, or after ....

AndreaB Contributor
Andrea, Capra Mineral Whey is really good stuff, I wonder if it would be more economical and stretch further with the family.

I haven't heard of that but if it's whey (as in from cow or goats), Dr E doesn't want us on anything like that at this time.

I also had the blood drawn and I think I am getting phlebitis because my arm is really swollen!! UGH! I am going to go put heat on it so i can hopefully prevent a terrible case of phlebitis.

Hope your arm is better now. :( I would be surprised if this round of abx cleared up everything.......I still think you have lyme.

Ugg, my friend is going on a cruise WITHOUT me! The nerve of it! She had the audacity to ask her MOM to go. I mean really. :lol::lol:

Could you do another one now? Do you have any vacation left?

I can't believe she's going again already! :o

Okay I have a problem, any suggestions on this?

Sorry Sherry, :( I don't have any ideas.

How on earth do you find anything on Mercola's website? I typed in Lyme and I couldn't figure out how to get from the topic to the actual info. Any ideas?

April already answered this......thanks April. :D

I was out for hours at the mall Friday and Sat. .....I cant believe I ventured out on Black Friday!! :blink:

I can't believe it either.....but I hate shopping and definately don't stray from the house unless I have to. We did stray from the house on Friday but it was to go grocery shopping.

So, I know that this together with the runny nose thing sounds like I'm getting sick, but I don't feel sick at all and I"m not wiped out like I should be if I were getting sick.

Hope it doesn't get too bad before turning around and getting better again. Just remember you're killing bugs/parasites.

Rachel--24 Collaborator
This is an interesting quote from one of those Lyme articles i just posted from Mercola. Have any of you found this to be true?

April,

It is true according to Dr. Harris at IgeneX. He mentioned it to me and said if I decide to retest he would recommend testing at the time of menses.

He also gave me a paper with a couple different abx protocols that can be used prior to testing...to hopefully increase antibody production. It was also written on that paper that testing is more accurate at the time of menses.

I have never done a repeat of my Western Blots though.

Rachel--24 Collaborator
I think that is the case .... I KNOW they say something in relation to the menstrual cycle and testing, but I can't remember if it's before, during, or after ....

I'm pretty sure its during menses but I'd have to look back on my paper to be sure. It seems like I recall him saying that...except for if I was to do the urine test which he gave me the kit for. I think for the urine test you cant be bleeding so it would be as close to menses as possible and the abx protocol is highly recommended for that test since the bacteria is usually "hiding".

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - DayaInTheSun replied to DayaInTheSun's topic in Coping with Celiac Disease
      5

      Being a burden to family/friends

    2. - Kiwifruit replied to Kiwifruit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Years of testing - no real answers

    3. - trents replied to Gill.brittany8's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    4. - Gill.brittany8 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    5. - Mnofsinger replied to Mnofsinger's topic in Related Issues & Disorders
      7

      Food Tasting Salty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,832
    • Most Online (within 30 mins)
      7,748

    Beth Drury
    Newest Member
    Beth Drury
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
    • Mnofsinger
      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.   1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
×
×
  • Create New...