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
That's why Rachel is having to address different things than me. She has more of a metal/candida problem with Lyme, I'm the opposite -- mine is Lyme with some metals and no candida (yet). I'll be treated for metals later, in the same manner that Rachel will deal with the Lyme later (if she needs to). We're taking a proactive stand on the candida ... I'm on Nystatin and TONS of probiotics to avoid it. I also don't eat any sugar or alcohol.

Yeah...I'm backwards...with metals and fungus being a bigger issue than Lyme.

Carla....I bet alot of people get tested for Lyme...are positive...and then they treat the Lyme but struggle alot and dont really recover. I bet they could be backwards too. Lyme cant be the biggest stressor for everyone. I think people have to get the full picture and go from there.

I think I would get nowhere fast if I agressively tried to treat Lyme. I'm sure I'd get alot worse because of candida and also because I'd be releasing a whole lot of metals with no way to pull them out.

I remember reading Dr. Klinghardts words on LymeNET posts. For heavy metals he says "The only way out...is the way through."

I've pondered that many times. :huh:

I know I've got some serious brainfog but sheeesh....it that like a puzzle or something?? :wacko:

I'm wondering if he's saying the metals have to be able to go through everything.....like the kidneys, gut, liver?? If it cant get through there is no way out.

Thats what I'm thinking. I think Dr. D. (or Dr. Amy as she calls herself) put me on these things so that the metals can get through...she wants them pulled toward my gut.

Yup...we are opposite. You are taking a proactive stand on the candida and I'm taking a proactive stand on Lyme/Babs by taking my cats claw and noni. :)


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
I'm surprised they don't have you taking Artemisia for the babs.

Dr. Amy tested all of the treatment options to see what works best for me. She can tell which treatment is gonna work best on the infection in my body. Thats how she decides what to use.

I think its something like this.....when shes testing me obviously the Babesia is "blocking" me. She knows its there and that its affecting me....in this case she says its affecting my nervous system. She can tell where the Babesia is causing stress in my body.

Then she takes a treatment option and tests it to see if there is any change. If it has a very positive change and "unblocks" my system...then it will work well against the Babs. Some things have no impact whatsoever and some things make a big difference. So she decides whats best.

Not everyone is the same obviously and not everyone has the same strain of Babs, Lyme ,etc.

I *think* this is the way it works....I'm sure I could get a better explanation from Scott though.

dlp252 Apprentice
Hope the 7th works out. Now I'm excited to hear how it goes for you. :)

It looks good for the 7th...he emailed me back and as of now, I'm slotted in for the morning. May have time to do a bit of shopping, then I'll have BioSET at 1:00. :)

AndreaB Contributor
It looks good for the 7th...he emailed me back and as of now, I'm slotted in for the morning. May have time to do a bit of shopping, then I'll have BioSET at 1:00. :)

I'll be looking forward to the 7th for both appointments now. :)

Rachel--24 Collaborator
Yay! I got an email already from Scott who may be able to schedule me for ART on Saturday April 7. He emailed me some times and I've responded back with what I think would work, so we'll see.

YAY Donna!!! :D

I'll be so excited when you go!! Heck...I'm already excited! :D

Scott is really learning alot each time he works with Dr. Amy so I'm sure he's even better at the testing now. For someone battling Lyme and 3 co-infections...I dont know how he stays organized and on top of everything but he does!

Last week he was herxing and not feeling the greatest but you'd never guess at all. He's very positive about everything.

CarlaB Enthusiast

Can you imagine how much worse I'd be if I had candida! :o I am so glad that the first thing I did when I went off the doxy a few years back was the anti-candida diet. I ate tons of coconut oil, I took anti-candida supplements and I ate only protein and veggies with no cheating - for SIX MONTHS. I even got half-n-half in my lattes to reduce the sugar! I would eat oatmeal (pre-gluten-free days) twice per week, but just a small bowl. My body seemed to need a little bit of carbs.

I'm sure that taking care of the mercury years ago has helped, too.

So, maybe I am backwards, too, but just let it get a foothold this time. I KNEW the stress was getting to me really bad, so we took our old house off the market ... THEN someone wanted it!! LOL We ignored his offers for six weeks before he made one we couldn't refuse! He said he was going to live there for five years ... I was thinking, "Well, you'd better list the house now, it'll take that long to sell it!!"

My take on "the only way out ... is the way through" is that your organs of elimination have to eliminate the metals after you chelate them from where they're hiding. They have to go "through" the organs of elimination -- skin, lungs, liver and kidneys.

Rachel, yeah, you're probably right. Some people on Lymenet just don't seem to get better. I think a competent LLMD is critical in getting better. They seem to be trained on all angles and know what you need first.

I can't imagine you or Miamia taking the heavy antibiotics I'm on because of the candida. Can you imagine how much worse it would get? I can't imagine you would feel any better. Lyme and candida overgrowth have very similar symptoms, so you'd just switch from one thing being the cause to the other leaving you feeling the same.

I didn't last too long at the gym ... only 20 minutes. It's got to be better than nothing, right?

Rachel--24 Collaborator
Okay, I'll give you a 10 second head start only because I love my fellow OMG peeps and you haven't been able to eat for so long. :lol: But, only 10 seconds!

I'm cool with that...I think I could grab the whole pie and be long gone in 10 seconds time. I'll take off running....pie on one hand....cool whip in the other. :lol:

I stared almost as long at the empty pumpkin pie shelf as I did the empty Bumble Bar shelf. :lol:

Oh yeah. <_<

My mom regularly tells me that she was getting really worried about me for a while there because I just looked sick. She tells me I look much more alert and alive now.

Yeah...my mom tells me this too. She tells me how theres a big diference since I've been seeing these Dr.'s...how I used to be so sick and crying all the time back when I was going to Kaiser and the Dr.s wouldnt help me.

She believes these Dr.'s are helping me but she wont tell other people who are questioning her about it because...."they dont understand this stuff" and for some reason its embarassing to her or something. :rolleyes:


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Rachel, that makes sense about the noni for the babs rather than the artemisia.

With Scott treating his Lyme for a couple years now, he obviously has more energy/brain power :) than some of us! I've also heard that the herxing gets better each time, unless you change medicine, then you might have a stronger one (I think he wrote on Lymenet that he just changed something).

For me, right now herxing and not herxing is almost the same ... just more pain during a herx ... the exhaustion is the same though. Hopefully, it won't be long before I feel better between herxes ... that's how it's supposed to work! He's probably doing pretty well compared to you and I. It's what we have to look forward to! :rolleyes:

Donna, that's exciting! Can't wait to hear how it goes.

Rachel--24 Collaborator
I always read here, I just usually don't have anything meaningful to add.

Patti.....Everything you say has meaning and is important. :)

Rachel--24 Collaborator
Apparently, you are WAY more interested in food than I am! ;):lol:

:lol::lol:

Carla....I'm thinking about FOOD. :ph34r:

CarlaB Enthusiast

You'll notice, I'm conspicuously absent in the mom talk ... when I was really getting sick and losing a pound per week, I visited her and my sisters in Texas. I got ridicule. They also tried to ruin my relationship with my dad with lies/twists of the truth. Morgan was starting to notice their constant abuse of me (yeah, it's THAT bad) and asked about it. She was ANGRY they were treating me this way (Morgan does not easily anger). I cut things off completely ... it wasn't good for my health, and I certainly did not want to set the example to my daughters that you stick around no matter what abuse someone dishes out.

My mom and sister were in Florida for a couple days the same time Morgan was there. They didn't even ask about me ... I don't even know whether they know I'm sick ... they didn't believe me two years ago when I was down there. They talk to my dad and grandma who both know ... they have to know ... they just don't care. Trust me, it's their loss, I've got great kids they're missing out on. ;):P

I don't recommend to any of you to cut it off, unless it's abusive ... :) It just needed to be done in my case. :(

CarlaB Enthusiast
:lol::lol:

Carla....I'm thinking about FOOD. :ph34r:

:lol::lol::lol:

Not me, I'm sure you've never met anyone who hates eating as much as I do!!! LOL Food doesn't make me feel good ... ;):lol::lol:

rinne Apprentice
Sounds like fun. :)

I'm so glad you're back to posting more often again. You've been missed. :)

:wub:

Thanks Andrea. :wub:

I overdid it on the weekend and am paying for it this week. I baked all sorts of gluten free goodies and had some women friends over for a tea party, got the china out, cleaned the house.....I am glad that I did it but I over indulged in sweets. Seriously though, how could I serve what I had not tasted? :lol:

Now I have to go back and catch up on the past couple of days.

I looked up the NDF and see it is recommended over the cholerella as a detox, have you discussed this?

AndreaB Contributor
Seriously though, how could I serve what I had not tasted? :lol:

I looked up the NDF and see it is recommended over the cholerella as a detox, have you discussed this?

It seems Patti doesn't have a problem with this, but I certainly would have to taste. :P

Rachel talked about the properties of NDF.....couldn't tell you what page it was on though. Sounds like pretty good stuff. My doctor likes something more natural than that I think but whatever problem I may have with metals it obviously isn't as bad as you two. I won't pursue anything like that for a few years.

jerseyangel Proficient
It seems Patti doesn't have a problem with this, but I certainly would have to taste. :P

I don't get it :huh:

AndreaB Contributor
I don't get it :huh:

:lol::lol:

I'm refering to your holiday baking......stuff you couldn't eat that you made for the family. :)

Rachel--24 Collaborator
Rachel talked about the properties of NDF.....couldn't tell you what page it was on though. Sounds like pretty good stuff. My doctor likes something more natural than that I think but whatever problem I may have with metals it obviously isn't as bad as you two.

Andrea....more natural??

NDF is just chlorrella, cilantro and probiotics. Those are all natural ingredients.

The difference with NDF is that the ingredients are "nanonized" They are broken down and the ingredients can pass through the gut and reach tissue and intracellular areas they would normally not be able to reach if they were not "nanonized".

This is what makes it more effective. I dont know why your Dr. doesnt think its natural?? :unsure:

NDF is a natural chelator.....which is why I'm on it. I'm not able to do anything synthetic at this time.

rinne Apprentice

Patti, I wish I had your self control. :)

Yes, antibiotics definately present a whole new set of problems. I think sometimes you do get to the point that they are necessary ... but the other three times I've had this, I've been able to take care of it without them. This time none of that worked, so I'm on the meds. -- a LOT of them.

That last stretch I had I think is as good as anyone can expect -- over 10 years! If we hadn't had so much stress in our lives during the past 6 years, I don't think it would have come back now.

I agree that antibiotics may be the best route but if taken there needs to be a lot of support so candida just doesn't take over. I think this is part of what goes wrong with Lyme through conventional treatments with doctors who don't pay attention to candida or mercury issues. I'm glad that you are so on top of this.

HI EVERYBODY! I have no idea what's going on here any more......but,

skimming this page, did I just read something about purple glittery bats? :P

:lol:

Susie! :D

I love how just the mere mention of the glittery bats brought you back here! Do you have glittery bat antenna? :lol:

Maybe we all do. :lol:

I may perhaps just add tiny bits of humour, here and there, like a dusting of bat glitter.... ;) (but hopefully not bat guano :huh: )

Definitively, NOT.

My glands swell in other areas too but those are the ones in my neck area.

I've got the swelling glands thing too but they seem to have gone down some. I've been bouncing on my exercise ball as a way of massaging my lymphatic system. Apparently you can also have a kind of massage that is specific to lymphatic drainage. Rebounders are supposed to be good for this also.

Carla....this is the stuff I'm gonna be starting on. Most of its prep for chelation.

Solidago......its for kidney support during detox. She said this ones important and she wants me taking a whole 20 drops per day. :o

She said everyone tolerates it well....even the kids. Its a tincture so its got alcohol...she said shes gonna make me some without the alcohol. Shes gonna be sending it me.

She said for all my other stuff I can just let it sit in warm water for like an hour before I take it...the alcohol will dissapate.

Charcoal....I already had this at home but never tried it...too scared. :ph34r:

She wants me taking 1 a day and then work up the dose with Anna.

She said charcoal works well....especially for candida die-off....she says thats when charcoal has its "shining moment". ...when your brain is all foggy and stuff....charcoal will help alot.

I took my first one today. :)

Noni.....this is for Babesia and for my brain. She wants me to start with 1 drop and work up to 10 drops. If I have problems with anything she wants Anna to desenitize me....especially for the important stuff.

She says to take the Noni at least 30 minutes from the Cats Claw. They must interefere with each other or something.

Comprehensive Minerals.....this is to build up the minerals that are often depleted during chelation.

From what I know....NDF doesnt chelate minerals but DMPS does. She must be getting my body ready for all the chelation thats coming my way. :unsure:

Modifilan....This binds metals in the gut. She wants me to work up to 4 a day. Shes gotta order that one and send it to me.

Thats it for new stuff.

Out of what I have already these are my most important items that I need to continue taking.

Armour thyroid

Magnesium

Colloidal silver....I havent been taking this but I do have it. She wants me taking 1/2 teaspoon for Lyme and fungus.

Radiation detox

Liver terrain...she says my body really likes this and and its helping me. I've been on it the whole time I've been seeing Anna.

Prima Una De Gato.....for Lyme

Nystatin.....for Candida

She also wants me to start on B12 if possible.

Thats it for now with the treatment plan.....I'm at phase 1. :)

Wow Rachel, I am so glad that you feel connected to this doctor and that a treatment plan is appearing with an estimation of the healing time needed. :)

That's another reason why I like my new doctor. I can run things by him, call and talk to him. He's an md so my mom has no grounds to complain, it's just that he's also a holistic practitioner now as well. Not that I'd stop seeing him if my mom didn't approve. I just don't need any other contentions. I love my mom dearly but we don't see eye to eye on many things. :)

Andrea, I am glad you have a doctor that you feel good about too.

Apparently, you are WAY more interested in food than I am! ;):lol:

:lol:

Can you imagine how much worse I'd be if I had candida! :o I am so glad that the first thing I did when I went off the doxy a few years back was the anti-candida diet. I ate tons of coconut oil, I took anti-candida supplements and I ate only protein and veggies with no cheating - for SIX MONTHS. I even got half-n-half in my lattes to reduce the sugar! I would eat oatmeal (pre-gluten-free days) twice per week, but just a small bowl. My body seemed to need a little bit of carbs.

How did you consume the coconut oil?

I think for me it is mercury and candida with Lyme as a background chorus, not too sure about the babesia.

Rachel--24 Collaborator
I looked up the NDF and see it is recommended over the cholerella as a detox, have you discussed this?

Yeah...I posted alot of scientificness about NDF awhile back. :)

Heres some links that I have...

This site is from the maker of NDF...a ton of info here.... Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

CarlaB Enthusiast
How did you consume the coconut oil?

On everything!! I use it like I'd use butter -- on veggies, toast, etc. It's great on popcorn.

My doc has me on VSL#3 ... google it, you might like it for candida. It's a probiotic with 450 billion bacteria! Miamia's doc has her taking it, too.

If I hadn't dealt with candida before, I probably wouldn't be so on top of it now! I'm really hoping I don't get it. I think you're right, many people with Lyme have candida problems that give them symptoms ... especially those who've been on antibiotics.

Rachel--24 Collaborator
Wow Rachel, I am so glad that you feel connected to this doctor and that a treatment plan is appearing with an estimation of the healing time needed. :)

Thanks Rinne. :)

I'm actually scared of chelation but I've read all of Dr. Klinghardts stuff on heavy metal detoxification. I do think he knows what he's doing and is pretty much the expert on this stuff.

I really need to trust whos treating me...I wouldnt hesitate if he were my Dr.

He's not....but I think Dr. Amy would be the next best thing. I trust her already. :)

She has extensive training with him and she said she's got alot of experience with this.

I felt like she knew exactly what she wanted to do and exactly how to get my body where it needs to be. She wasnt hesitant about how to proceed. To me thats a good sign. :)

AndreaB Contributor
Andrea....more natural??

NDF is just chlorrella, cilantro and probiotics. Those are all natural ingredients.

He didn't tell me what he liked. Maybe the word was gentler, slower. I don't know. :unsure: But if I had metal toxicity, I'm sure I would need something like NDF. Who knows, that may be in our future sometime.

Rachel--24 Collaborator

Does anyone know about B12 nasal sprays?? :huh:

The Dr. wants me on B12...she said the nasal spray is sufficient...or shots I can administer to myself....or sublingual. I could never find any sublingual that doesnt have other crap in it. The one I have has cherry flavoring and other bad stuff. :(

I wanna try the nasal spray I think. I forgot to ask her where to get it. :unsure:

CarlaB Enthusiast
Does anyone know about B12 nasal sprays?? :huh:

The Dr. wants me on B12...she said the nasal spray is sufficient...or shots I can administer to myself....or sublingual. I could never find any sublingual that doesnt have other crap in it. The one I have has cherry flavoring and other bad stuff. :(

I wanna try the nasal spray I think. I forgot to ask her where to get it. :unsure:

You might post on the general forum, I'm sure someone will know. I've never heard of it.

dlp252 Apprentice
I've got the swelling glands thing too but they seem to have gone down some. I've been bouncing on my exercise ball as a way of massaging my lymphatic system. Apparently you can also have a kind of massage that is specific to lymphatic drainage. Rebounders are supposed to be good for this also.

I have both a rebounder and an exercise ball, and I bounce on one or the other of them once in while...I think I really need to do it more often. The HN doctors I go do also do a lymphatic drainage massage.

Does anyone know about B12 nasal sprays?? :huh:

The Dr. wants me on B12...she said the nasal spray is sufficient...or shots I can administer to myself....or sublingual. I could never find any sublingual that doesnt have other crap in it. The one I have has cherry flavoring and other bad stuff. :(

I wanna try the nasal spray I think. I forgot to ask her where to get it. :unsure:

Uh, yah, I can't imagine giving myself a shot, lol. Stupid alcohol! I wonder if Whole Foods would have it...I don't think I've ever heard of the nasal spray though, but that doesn't mean they don't have it, lol. I get overwhelmed looking at their supplement shelves. :lol:

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. - TerryinCO replied to TerryinCO's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      New Guy Here...

    2. - knitty kitty replied to ellyelly's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Biopsy results - second opinion?

    3. - ellyelly replied to ellyelly's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Biopsy results - second opinion?

    4. - knitty kitty replied to ellyelly's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Biopsy results - second opinion?

    5. - ellyelly posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Biopsy results - second opinion?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,233
    • Most Online (within 30 mins)
      7,748

    tkayj
    Newest Member
    tkayj
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TerryinCO
      Thanks, Knitty Kitty. No, I'm just taking B12...also a vitamin D3.  For gerd - Pantoprozole. Trents, thanks for the links. There's a lot to digest there (pun intended), I'll have to read those a few times to grasp.
    • knitty kitty
      Because of your anemia, you may not be making sufficient antibodies.  I hope they did a total IgA as well as the tTg IgA, and DGP IgG.  I hope you will share the results with us.  If your body isn't making a large amount of antibodies, then the intestinal damage would be less as well.  The antibodies attacking our own cells is what causes the damage. Anemia, diabetes, and thiamine deficiency can cause false negatives on antibody tests.  Have you been checked for nutritional deficiencies besides the ferritin?  Several vitamins and minerals are needed to correct iron deficiency.  Have you been taking any vitamin supplements? Positive on the genes, I see.  Increases the likelihood...  Good job on ramping up on gluten for the test!
    • ellyelly
      Thanks so much for the link and for your thoughts! I have been on a gluten - containing diet and ramped up my intake in the couple of weeks leading up to the endoscopy, so I’m hopeful that the biopsy is painting an accurate picture.    I don’t quite understand what else might be causing the lymphocytosis and the inflammatory cells/ clusters of plasma cells and struggled to get clarity from the specialist. Perhaps this is common and nothing to be concerned about?!   In case relevant, my mother sister are both celiac, and I have the genes: HLA-DQA1*05:01 = Heterozygous HLA-DQB1*02:01 = Heterozygous Thanks again! 
    • knitty kitty
      Welcome to the forum, @ellyelly! How much gluten were you eating in the weeks prior to the endoscopy?  Many people with indeterminate results had cut down or eliminated gluten from their diet beforehand.  This can lower the autoimmune response and decrease the symptoms (lower antibody levels,  reduced inflammation and intestinal damage may heal).   If you weren't eating a sufficient amount of gluten per day in a minimum of two weeks prior to the endoscopy, you may want to do another gluten challenge with repeat endoscopy. Here's an article that explains, be sure to read the comments.   
    • ellyelly
      Hi all, Such valuable insights shared here - I am so grateful to be able to read along! Thank you all for sharing your wisdom.  I (37yo female) have recently had an endoscopy to screen for celiac given a strong family history and extremely low Ferritin for the past 7 years (not responsive to oral supplements). I am awaiting celiac blood panel results (completed post-endoscopy to provide another piece of the puzzle, I think was just an accidental oversight not doing earlier).  The endoscopy results are as follows: Gastroscopy:  Stomach: Mild gastritis and one 4mm benign appearing inflammatory polyp in the body.  Duodenum: Largely normal but few shallow erosions seen in the duodenal bulb. Microscopy:  1. Sections show specialised and non-specialised gastric mucosa with increased numbers of chronic inflammatory cells within the lamina propria including occasional clusters of plasma cells amounting to mild chronic inflammation. No active inflammation, intestinal metaplasia, dysplasia or malignancy is seen. Immunostains for Helicobacter organisms are negative. 2. Sections show small bowel mucosa with normal villous architecture. A mild non-specific intra-epithelial lymphocytosis is noted at the villous tips of uncertain clinical significance. The lamina propria contains a normal population of chronic inflammatory cells. No granulomas or parasites are seen. There is no dysplasia or malignancy. Conclusion 1. Gastric: Mild chronic inflammation 2. Duodemum: Mild non-specific intraepithelial lymphocytosis with preserved villous architecture.  The GI specialist, assuming blood tests come back normal, feels it is unlikely that it is celiac given the normal villous architecture. Suggested continuing on as usual and monitoring for symptoms etc, screening with blood test if required in the future.  Worth a second opinion or does this seem accurate? Anything else I should be considering? I feel a little lost as to how to best proceed! Thanks again.  
×
×
  • Create New...