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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

mftnchn Explorer

Another quick drive by...I'm in Portland, and able to "piggyback" on a wireless in the area, so hopefully I'll get to catch up over the next two days.

So cool today!!!! I got to meet Andrea, and the adorable kids! How fun! Wish you were all there.

I have my update almost ready to send by email...

The herx is better today and steady rather than pulsing with the meds. I am hoping to stick in there, and push it enough for that hard hitting attack on the lyme like you have talked about, Carla. But I'll check that with my LLMD before I do that. I am supposed to go up to 30 drops a day of the andrographis and herxed on 3 drops a day! Or it could be the stephania that I am herxing to.

OUr free house is really nice! Needs a few things, but there wasn't much food so it will be easy to clean out the gluten stuff. Yey!

Thanks for your thoughts and will be back soon with more update.

Sherry


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
GliadinX
Food for Life



Celiac.com Sponsor (A8-M):
NutHouse! Granola Co.


  • Replies 33.4k
  • Created
  • Last Reply
truthsearcher Rookie

Nice picture April. So nice to see you and your blondie how adorable!

hugs,

Laurie

confusedks Enthusiast

I have no good news about the insurance unfortunately. Sigh. They didn't even call us today like they were supposed to. No shock there. <_< So we paid $600 for 21 days of stupid Mepron! I started it tonight and am already herxing! Ahhh! I have a busy day tomorrow, but it's a b12 day, so hopefully that will help.

So I got back my stool sample tests and apparently I have a lot going on.

First of all, I am STILL off the charts for gluten! Ugh! What does that mean? I wonder if I do have Celiac?! Hmm! You would think after 10 months (I think....can't do math :lol:) I shouldn't still be reacting.

I have:

-a parasite. No surprise there. I will talk to Dr. H in February about going on Humaworm for that.

-opportunistic bacteria...well, it was very high. Does anyone know what this means?

-weak positive yeast issue

-high percentage of propionate

-high percentage of valerate

-WBC's are "few" and it should be negative

-Mucus is positive

-pH is very low

-many vegetable fibers :lol: :lol: I think that's so funny! They actually LOOK for vegetable fibers!

-high cholesterol- don't know how though...I never eat anything with cholesterol! :wacko:

-resistant to: amoxicilin, cefuroxime, ciprofloxacin, clindamycin, penicillin, potassium clacula, sulfa, berberin, and caprylic acid. I don't know what being "resistant to" means, but whatever

Now, the blood tests that came back are for Viruses. I am positive for Epstein Barr Virus (both kinds :() and Mycoplasma. Ugh, I have no idea what is going on with me. I am now starting to wonder if Lyme is my issue. I think this is just denial...but I don't know!

Well, there is more I wanted to say, but I need to get some sleep.

mftnchn Explorer

Wow, I think I am finally caught up reading. We have a "friendly neighbor" here with an open connection, so are able to get online even though this house has no internet access.

The herx has settled into a more mild ongoing one, so I am hanging in there on the starting dosage.

I'll email my update in the morning to the several who want it...once I have time to add the list of meds Dr. E is suggesting I take.

Oh, boy have I ever wondered in the past if I had lyme!!! Especially in the first few months of treatment. After a lot of improvement, I am convinced but find it quite hard when I go to explain it to other people. Perhaps because of the controversy, because a lot of people don't know much about lyme, and because my treatments sound strange. Long term abx is not acceptable to most people, let alone alternative treatments. That's why it has been so great to connect up with everyone here.

Sherry

mftnchn Explorer

Kassandra, that is such good news about the talk with your brother. Very meaningful.

mftnchn Explorer
Sherry, they say one day per hour of time change .... it's pretty much right on the money for me and jet lag ... you probably already knew that. Just try to get as much rest as you can!

LOL that's 16 days....

mftnchn Explorer
You and me both!! :lol: I HATE the phone, lol.

Add me to the list of folk who dislike the phone, I don't mind receiving but often avoid calling out except for certain people or some business calls. I avoid calls where I am not really confident of what to say.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
GliadinX
Daura Damm



Celiac.com Sponsor (A8-M):
Tierra Farm


mftnchn Explorer

April, that sounds interesting. Japanese and Chinese can have both similarities and differences.

Interestingly my strong color and bruising from the last gua sha has been clearing up quite rapidly the past two days. I wonder if the chlorella is helping that?

AndreaB Contributor
OUr free house is really nice! Needs a few things, but there wasn't much food so it will be easy to clean out the gluten stuff. Yey!

I'm glad the house is going to be easy to get into shape. :D

Now, the blood tests that came back are for Viruses. I am positive for Epstein Barr Virus (both kinds :() and Mycoplasma. Ugh, I have no idea what is going on with me. I am now starting to wonder if Lyme is my issue. I think this is just denial...but I don't know!

Yes, you have lyme.

EPV.....I think happygirl had that but I'm not sure......hopefully she'll chime in.

covsooze Enthusiast

Donna, you really should try a neti pot. I still have my sinus problem, but the neti pot has been the only thing to give me relief.

April, your piccie is adorable :D

Kass, epstein barr is a nasty critter lol. Dr P feels that it was the start of my problems (which I agree totally with). He is of the opinion that it holes up in the adrenals and can wreak havoc there months or years later. With all that stuff going on, it's little wonder you've been feeling so rough.

Nyxie, I understand just how you feel about being in denial. I've been on the same roller coaster. I get to see Dr P at the beginning of March, and am having some tests in the meantime, so me and you can encourage each other to hang on in there until March, when hopefully we'll start getting answers and be back on the road to health :)

S x

miamia Rookie

kassandra-

what stool test did you have done? was it genovas or a different one? it sounds really in depth.

Miamia

when i am gonna get to meet a fellow rachiellvillian?

miamia Rookie

i think i need to clean under my bed because i have been sleeping really bad- maybe thats thekey. It seems like all of a sudden at night i get really nervous it doesn't seem normal- more chemical its really weird.

Where has Rachel been? Its been awhile

Donna-

i don't have anything exciting to say to you but i just haven't said hi to you in a while- I hope you are doing well and slept better last night.

confusedks Enthusiast
kassandra-

what stool test did you have done? was it genovas or a different one? it sounds really in depth.

Miamia

when i am gonna get to meet a fellow rachiellvillian?

It was Metametrix. It was really thorough!

Everyone,

I woke up at 7.30 this morning because I have to go see my brother....ugh! Thank god for b12 shots....it's like my coffee! :D

mftnchn Explorer

Hey all, what a difference to be in another part of the world! Usually I check in the morning to find 3 pages of posts!!!

I sent the update about my visit with Dr. E by email. If you didn't get it and want it, send me a PM.

Sherry

CarlaB Enthusiast
I am now starting to wonder if Lyme is my issue. I think this is just denial...but I don't know!
You have Lyme. It has weakened your immune system so much that these other things have taken the opportunity to reside in you.

Dr. B said in a talk I watched online that before they used to just treat borrelia for years and years .... all the other infections would eventually go away, too. That's because the Lyme makes it possible for you to have the other infections. Now they treat coinfections and that has cut down on total treatment time.

I'm glad the Mepron is working, LOL. How much are you taking? I was on 2 tsp. twice daily. Tastes yummy, huh?

LOL that's 16 days....

Or if you subtract the other way it's only 8 days. ;)

mftnchn Explorer

Regarding the jet lag, it usually takes me 10 days, but if I stay up in the daytime and take ambien at night I usually function pretty well without much late afternoon dragging around.

Sherry

confusedks Enthusiast

Carla,

I'm taking 1 tsp. 2x daily. I feel better today...but I think it's the b12.

dlp252 Apprentice

Short update of my own. I had a BioSET appointment today...I'm at the point where I don't need to go that often, and we're done checking what they had me scheduled for, so now when I go in, they basically ask me what's going on healthwise, any complaints, issues, etc. So I told her (Denise) about my sinus infection.

She asked if I was having any other fungal symptoms, and I said I thought so because I've been having horrible itching, bloated belly, sinus issues and some other things, so she did the candida panel from the computer. TONS of stuff came up and sure enough my sinuses came up. TMJ came up and she asked if my jaw hurt...it has, but I told her it seemed connected to my ears...my ears hurt too...kind of like an ear infection. Sure enough, ears came up, lol.

So, I need to recommit myself to really sticking to the diet... I haven't been. :ph34r::ph34r:

I made my next appointment for next month.

I also checked to see if I'm on the list to see Dr. Amy when she comes. They said she is going to try to come every MONTH!!!! That'd be cool!

-resistant to: amoxicilin, cefuroxime, ciprofloxacin, clindamycin, penicillin, potassium clacula, sulfa, berberin, and caprylic acid. I don't know what being "resistant to" means, but whatever

It was Metametrix. It was really thorough!

I was going to say it sounded like my Dr.'s Data test. What they did for that was to test various agents, both prescription and over the counter, against the particular bacterial issues and see what worked best. For me and my particular bacteria Oregano Oil and Caprylic Acid was VERY effective against ALL of the bacteria. There were a couple of things that worked okay for one or another, but these two worked on all of them. So it sounds like the test you did tested your stuff against the various supplements and meds.

Donna, you really should try a neti pot. I still have my sinus problem, but the neti pot has been the only thing to give me relief.

No, no :lol: It's giving me e-coffee nightmares, lol. :lol:

i don't have anything exciting to say to you but i just haven't said hi to you in a while- I hope you are doing well and slept better last night.

Hi sweet Mia!!!! It's always good to see and hear from you! I slept a little better, but apparently not good enough....my mom told me today that my dark circles are back. <_< They'd been getting better.

Rachel--24 Collaborator

Kassandra,

People with Lyme have mulitple issues....I've never heard of anyone *just* having Lyme. I dont think that there's a specific order as to what leads to what...in the end its a bunch of factors all contributing to unwellness.

There are MANY people who have Lyme and are not sick...they havent reached that point where the immune system has become overwhelmed...and they may never reach that point...everyone is different.

Personally, I dont believe that Lyme is *the* main factor in every case....but for you it very likely is. You will most likely need to address many things in order to overcome it. Your immune system has to be strong enough to keep the Lyme in check (after treatment)...the more things that you have going on the more challenged your immune system will be.

Most of these infections are opportunistic...including the Lyme. They work together..(with the help of metals and other toxins)...and they create an environment which is favorable for them. All of these things together can severely weaken the immune system....leaving you even more vulnerable.

Its almost impossible to say which symptoms are caused by Lyme, which by parasites, which by candida, which by an overwhelmed liver, etc. etc. Basically most of us just have alot going on and when you address each issue you take a burden off of your immune system. Ultimately, you want to remove as many burdens as you can identify so that you can regain your health.

Often people are just treating the Lyme...but then relapse after treatment is a strong possibility because all of these other factors are still present....and still weakening the immune system. Lyme will come back just like candida will come back if conditions in the body are still favorable for the bugs.

Dont think that because you have so much going on you do not also have Lyme. Just know that by identifying these things and treating them with the Lyme...you have a much better chance of fully regaining your health without having to stay on abx for years and years.

You are doing the right thing in testing for all of these contributers. Some of them may be causing more of your symptoms than the Lyme itself....everyone is different. For many people coinfections are more of an issue than the Lyme...and without those coinfections and other factors (such as metals) the Lyme itself would not be causing chronic illness. The more infections you have the weaker your immune system will be...and the weaker your immune system is the sicker you become.

Also, all of these issues have an impact on how well your body is able to detox...once these organs become overwhelmed by the toxins from all of these infections youi will feel the symptoms. The symptoms are mainly coming from toxins which the body is unable to clear. Lyme produces neurotoxins...its a huge burden.

Rachel--24 Collaborator
I also checked to see if I'm on the list to see Dr. Amy when she comes. They said she is going to try to come every MONTH!!!! That'd be cool!

That would work out GREAT if she's able to do this. That would pretty much resolve the problem of having so many patients waiting to see her.

I'm sure follow up appts. would still be every 3 months...but by coming every month she can see ALOT more patients without having to extend her visits.

She could probably just come for a couple days each time.

I hope this means you'll become a patient soon. You will LOVE her....she is amazing! :)

dlp252 Apprentice
Its almost impossible to say which symptoms are caused by Lyme, which by parasites, which by candida, which by an overwhelmed liver, etc. etc. Basically most of us just have alot going on and when you address each issue you take a burden off of your immune system. Ultimately, you want to remove as many burdens as you can identify so that you can regain your health.

This is sooo true. Lyme is my main problem, but I don't think it's causing all of my symptoms...it's just allowing all the other stuff to go bonkers.

dlp252 Apprentice
I hope this means you'll become a patient soon.

Me too! :) :)

confusedks Enthusiast

Rachel,

Thanks for that. I know I have Lyme, but there is a part of me that keeps thinking that's not the case. ;) I am really worried about detox. I plan on talking to Dr. H about that when I see him on Feb. 9th.

Everyone,

I think that I'm just frustrated about Lyme, etc. because everyone in my family thinks I am letting this take over my life. I have NEVER been one to be sick, for example I went 30 days with a period before I told my mom! :lol:;) I don't like being sick at all, but for now I need to focus all of my energy on getting better. I am still going out when I am able to but since I'm not in school, they are all freaked out.

On a random side note, I am worried about detox. I know people take chlorella and charcoal, but what else can I do? I just worry that I am not going to detox well and then next thing we know, I'm dealing with high liver enzymes, etc.

confusedks Enthusiast

Donna,

I am actually doing good on my diet so far. It's not an anti-candida diet necessarily, but it's the diet from Dr. B's guidelines, the LLMD just basically copy and pasted it for me. I think it's easier than a strict anti-candida diet. I don't have a huge problem with candida, so they aren't having me be super strict. For example, I can still have vinegar and condiments that don't have sugar.

It feels much more manageable than a strict anti candida diet, for me anyway.

CarlaB Enthusiast

Kassandra, I do the coffee enemas, take saunas, and drink lemon water for detox. I take chlorella if I feel toxic, like during a flare up or herx.

The parsley and burbur of the Cowden protocol is also for detox.

Maybe you can see if your grandparents will buy you a spice ship .... or maybe your dad when he's here. :)

Archived

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


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      129,765
    • Most Online (within 30 mins)
      7,748

    LisaMarie39475
    Newest Member
    LisaMarie39475
    Joined

  • Celiac.com Sponsor (A20):
    Lakefront Brewery


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Authentic Foods



  • Upcoming Events

  • Posts

    • lizzie42
      I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any ideas? 
    • knitty kitty
      Oh, @MagsM, Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.   I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.   If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots.  The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.    Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).   I hope this helps give you some direction to take on your journey!
    • MagsM
      Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started?  My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 
    • Scott Adams
      You are right! The logo the have on their packages got me confused--it looks like they are less than 20ppm, not certified GF. Thanks for catching that! My brain also zeroed in on this "less than 10ppm" but I should have seen the rest...
    • Wheatwacked
      Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus.  Zinc is an antiviral essential mineral. Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease.  It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg.  It has also been connected to gallbladder disease.  Brain fog and high homosystein blood level is an independant indicator of cardiovascular disease. Eggs and red meat are the primary sources.  Three eggs or 10 cups of cooked brocolli a day.  Low vitamin D is a common denominator of autoimmune disease.  Is it a contributing factor or a result? I think that low vitamin D is maybe the main contributing factor.  Low vitamin D allows the immune system to run amuck. I would like to point out the many diagnosed with Celiac Disease went through several misdiagnoses, like gall bladder disease, and were repeatedly tested negative and then one day tested positive. Regardless of your diagnosis, you should avoid gluten, you mention it in your first post : "When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal". It can take six months to several years to heal completely.  How long I believe is directly related to how quickly you identify deficiencies and correct. Essential to my recovery:  Thiamine, 10,000 IU vitamin D3 a day, maintaining 25(OH)D at 80 ng/dl (200 nmole/L), 600 mcg Liquid Iodine, Phosphatidyl Choline.  And of course: Gluten Free.
×
×
  • Create New...