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Omg...i Might Be On To Something

Rachel--24

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jerseyangel Proficient
jerseyangel
Posted

Happy Birthday Carla! :D

This time for real :lol: Hope you have a great day!

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Thanks for the link Kassandra. :)

Yet another expensive thing for me to order. :rolleyes:

I think it will provide useful information so I'm just gonna go ahead and get the strips.

Rachel reminded me in another post about the other things that are given to treat fibrin (Rachel, hope you don't mind me mentioning it here also)

Julie...of course not.

Its good to refresh our memories on this stuff. :)

I thought it was Nattokinase I was going to be put on, but it's Rechts Regulat. I tested really strongly for it through ART. It's a richly fermented product, which my body seems to love.

Rachel, it probably will not be the thing for you

Nope...I'm pretty sure my body's not gonna love the rich fermentedness. :P

Anyways, it is a good product from all that I've read. I almost ordered it last year....till I looked at the ingedients. It scared me. :ph34r:

Its kind of expensive but you dont need to use alot of it so I think one bottle would probably last awhile.

tom Contributor
tom
Posted

HAPPY BIRTHDAY CARLA!!!!!!!

I haven't had one spasm, or anything heartburn or reflux related since I have been on the charcoal, even when eating my main trigger foods, it's a miracle!

:) :) What a welcome development THAT must be!!!!!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I'm starting on transdermal DMPS within the next week. Dr. S. called it into the compounding pharmacy that Amy uses and it should arrive soon.

I saw him yesterday. He had the results of my last urine test and first thing he said was that it looked really good....theres barely anything coming out so we must have got it all. :huh:

Yeah....if only! :lol:

I told him that "NO....it looks really bad...because Amy says mercury is still a huge issue."

Then he said..."OR...it could be very bad if your pathways are blocked and nothings coming out."

I told him that unfortunately it looks like thats the case and I let him know some of the things that we're working on to try to get it figured out.

He asked what Amy thinks about getting me started on transdermal DMPS...this is what she wants to try so he went ahead and ordered the prescription.

Only problem is that it contains glutathione and we just arent too sure how well I'll tolerate it. They were unable to get a sample from the lab so hopefully I dont react badly because its pretty darn expensive.....but still less than the 2 DMPS IV's I was getting each month.

Anyways the transmission into the body is completely different than the IV's so its capable of moving out the metals even if other methods failed. Amy felt that it might have better uptake into the head area.

Dr. S. said that in his experience sometimes when one method isnt working switching to another method does the trick. So its still possible that this could make a difference...so long as the glutathione doesnt kill me. :lol:

He used Dr. Buttar's story as an example. He's the Dr. who created the transdermal DMPS and it was first used on his own autistic son. Open Original Shared Link

Hopefully, I will have good results.

He also mentioned neural therapy as a possibility for moving the metals out. I dont know who does this (besides Dr. K.)....so I'll have to look into that.

He feels that in most cases its something other than the mercury which causes the block in the pathway. I still feel the block could be caused by the mercury's presence and the deficiences it might cause with cofactors of essential enzyme systems. He agreed that that could be the case.

So, I want to check the copper, the molybdenum and whatever else we can check.

He said the red blood cell test is the best for looking at copper. I have to fast for the test so I'm going back Monday and I chose to go ahead and have all the minerals tested as well as toxic metals....although I'm not sure if any of that would show up in blood.

So I think thats the "gist" of it. :)

I'm trying out new things.

TD-DMPS

Serralone (for fibrin)

Detox Foot Pads (keep forgetting to order them!)

Molybdenum (should arrive today)

and then I just need to wait a couple weeks for the results of my bloodtest come back.

Oh...I asked the nurse about my vein. She said most infiltrations clear up within 48 hours. She said my vein feels really hard and it might just stay this way. :huh:

She said the minerals from the IV might have calcified the vein...but she wasnt too sure. She could see that it looked bruised but she said the pigment may have changed and it just might stay that way. :(

I'm gonna ask the head nurse next time I see her...shes got like 30+ years experience so I think she might know for sure what it is.

confused Community Regular
confused
Posted

Rachel,

I just ordered the detox foot pads. I got them from verseo. I got 90 for 76 bucks. They were supposed to be more but i searched online for an discount coupon and found one for 20 percent off.

paula

CarlaB Enthusiast
CarlaB
Posted
Happy Birthday Carla!!!!

I hope you have a really great day :) Do you have any special plans?

Thank you .... Yes, lunch with Morgan, drive home, dinner with Adam and the kids at Cheesecake Factory. :)

Happy Birthday Carla!!!

:D:D Happy Birthday Carla! :D:D

Does that make you older than me now? ;):lol:

<--- quick exit, stage right

Uh, Nyxie, I guess it does .... so when are you going to catch up?

Happy Birthday Carla!!!

Hope you have an enjoyable and relaxing day. :)

Happy Birthday Carla! :D

This time for real :lol: Hope you have a great day!

HAPPY BIRTHDAY CARLA!!!!!!!

Thanks everyone!

confusedks Enthusiast
confusedks
Posted
Thanks for the link Kassandra. :)

Yet another expensive thing for me to order. :rolleyes:

I think it will provide useful information so I'm just gonna go ahead and get the strips.

The actual test strips are not that expensive, but the shipping is $45! :o :o

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confusedks Enthusiast
confusedks
Posted

Happy Birthday Carla!

confusedks Enthusiast
confusedks
Posted

I sent out the email update from my appt today. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
The actual test strips are not that expensive, but the shipping is $45! :o :o

I know...and guess what...I'm not ordering them now! :o

For me it came up as $38 for shipping....thats crazy...I dont need them tomorrow morning! WTH!! :blink:

I'm gonna wait and find out if theres any other way to test. :P

confusedks Enthusiast
confusedks
Posted
I know...and guess what...I'm not ordering them now! :o

For me it came up as $38 for shipping....thats crazy...I dont need them tomorrow morning! WTH!! :blink:

I'm gonna wait and find out if theres any other way to test. :P

LOL! I think they have to be refridgerated, hence the overnight shipping thing. It's so expensive its kinda crazy, but lots of things that need to be cold (B12 shots) cost less than the shipping! :o

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
LOL! I think they have to be refridgerated, hence the overnight shipping thing. It's so expensive its kinda crazy, but lots of things that need to be cold (B12 shots) cost less than the shipping! :o

I dont even remember my M-B12 shots costing that much to be shipped overnight. :huh:

Its very possible that I just wasnt paying attention...everything was done over the phone when the pharmacy called me. The cost wasnt staring me in the face like with these sulfate strips. :blink:

Anyways, I got to the other link and they have test kits. They have a sulfate 24 hr. urine test which might be good for me (I have no idea the cost of the test).

They also have sulfite test strips...100 strips for $100. Now I have to see if they also charge some crazy fee for shipping or what. :lol:

I wonder how many sulfate strips you get for $55 + $45 shipping??

I'm gonna bargain shop for my test strips. :P

I think I need to test though because sulfites in the urine would indicate a need for molybdenum (I just learned how to pronounce this correctly yesterday :D ). If I'm deficient with molybdenum it could be causing alot of my sensitivities to sulfites/sulfur as well as other things.

This is the link to the test kits....I'm thinking a Dr. might have to order them??

Open Original Shared Link

I'll print it out and bring it to them on Monday. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

For anyone that cares....

Molybdemun is NOT pronounced "Molly-bee-denim" :lol:

The correct way to say it is more like..."Mul-ib-da-mun" :)

mftnchn Explorer
mftnchn
Posted
Sherry,

9 hours! Is that one way? Hope everything goes well for your renewal as well.

4.5 hours on the bus one way so return trip was 9, plus 30 minutes from the bus station to home and to office so 2 hours there, plus another couple of hours driving around to two offices to do the last part of the visa process. So I was basically riding in a car or bus almost all of yesterday. Left the house at 7:30 and got home at 11 pm.

Donna, Paula, glad things are looking up.

Sherry

mftnchn Explorer
mftnchn
Posted
April, are you doing any better with the Nattokinase? If I remember correctly you started out ok but now you aren't sure since you are having gall bladder pain? I think Sherry was the one doing fine with it.

Kassandra, did you find out if it is ART she is doing or another form of muscle testing?

Sherry might have some good advice because she was dealing with this not too long ago when she first went to ART, what if all the things she was on tested poorly?? This was just one of the questions she was struggling with.

Yes, I seem to be doing well on the Natto. Weird thing is, it is the only soy related thing that I tested well to in ART, and I also reacted to an IV infusion that had a tiny amount of soy in it. It has got me wondering though....if it is increasing my sensitivity to legumes and might have increased my reaction to lima beans last week. My allergies are a little better today but still active.

Kassandra, I don't know what to tell you about testing poorly for Mepron. Fortunately the only abx that I tested well for was the preferred one, azithromycin. Levaquin tested poorly and I didn't see much benefit or herx in the 1 month I took it. The question I have is if your practitioner is anti abx, will you get an accurate reading on this with her? I don't know enough about muscle testing. The other worry I have is your practitioner really isn't up on lyme treatment. That would make me more reluctant to trust her though her input may be valuable.

Sherry

mftnchn Explorer
mftnchn
Posted

Carla, Happy B-day though you'll get this a day late probably. Thanks for the summary and update, I hope you are not discouraged with going back on the meds for lyme and bart.

Sherry

miamia Rookie
miamia
Posted
April, are you doing any better with the Nattokinase? If I remember correctly you started out ok but now you aren't sure since you are having gall bladder pain? I think Sherry was the one doing fine with it.

Rachel reminded me in another post about the other things that are given to treat fibrin (Rachel, hope you don't mind me mentioning it here also)

I thought it was Nattokinase I was going to be put on, but it's Rechts Regulat. I tested really strongly for it through ART. It's a richly fermented product, which my body seems to love.

Rachel, it probably will not be the thing for you :lol:

Well at least I know I am not crazy, I was going back trying to find your original post to comment on. I thought I had missed it and felt bad.

So it wasn't the flu afterall? I hope you feel better soon :)

Glad you enjoyed Riverdance, it's something I want to see in my lifetime :D

Kassandra, did you find out if it is ART she is doing or another form of muscle testing?

Sherry might have some good advice because she was dealing with this not too long ago when she first went to ART, what if all the things she was on tested poorly?? This was just one of the questions she was struggling with.

I would love to hear how it goes so you can send an email along to me too :)

I took Boulouke for fibrin when I was on Levaquin. I tested very well for it. And I handled it fine. Just one more thing ou guys have as an option.

miamia Rookie
miamia
Posted
:D:D Happy Birthday Carla! :D:D

Does that make you older than me now? ;):lol:

<--- quick exit, stage right

HAPPY BIRTHDAY CARLA!!!

miamia Rookie
miamia
Posted

I have the detox foot pads at my house I have had them for weeks and have not used them I don't know whats wroong with me. Maybe I;m scared of them

confused Community Regular
confused
Posted
I have the detox foot pads at my house I have had them for weeks and have not used them I don't know whats wroong with me. Maybe I;m scared of them

How about when i get mine we start them together, would that make you less scared. I cant wait to try them, I dont think they will cause any side effects.

paula

confused Community Regular
confused
Posted

Ok im really getting mad about this water situation we are in. They had told us at first it was just salmonella that we had to worry about. Well now they had an article in the paper telling us the water also tested for two parasits-giardia and cryptosporidium. I am just so mad i was drinking water that had so many things wrong with it and they never told us. Now im sititng here thinking could these parasites be blamed for my malabsorption being higher, could these parasites be the root of my leaky gut, could i really have an problem with parasties and not candida.

Is there a cleanse i can do that is not as potent as humaworm to make sure all of this stuff is out of my body.

paula

dlp252 Apprentice
dlp252
Posted

Hi everyone...I am sooo busy at work that I don't know if I can ever get caught up! Just wanted to say hi!

CarlaB Enthusiast
CarlaB
Posted
Happy Birthday Carla!

Thank you!

Carla, Happy B-day though you'll get this a day late probably. Thanks for the summary and update, I hope you are not discouraged with going back on the meds for lyme and bart.

Sherry

Thanks, Sherry, I'm not. I knew the Lyme was still there, we were just trying to get it with herbs since it seemed that most of it must be in the cystic form since I only had symptoms if I were on the Tindamax. So, it wasn't like I had been pronounced well. :) I'm thinking the break was probably a good thing. :)

I had read that this is the nature of Bart, too .... to get well with treatment, then to have to redo treatment two or three times.

I am feeling much better on the meds. I was down to about 78% .... now I'd say I've jumped up to 90% again. So, not where I was before, but much better. I'm still waiting for that initial herx .... maybe my load is low enough that I won't have it.

It was funny, after years and years of no one (except Adam) believing me, I was expecting my doctor to question the need for me to go back on drugs. I guess that's just so deeply ingrained in me it's going to be hard to overcome!

HAPPY BIRTHDAY CARLA!!!
Thank you!

I have the detox foot pads at my house I have had them for weeks and have not used them I don't know whats wroong with me. Maybe I;m scared of them
I guess you like your toxins and want to keep them! :huh:
dlp252 Apprentice
dlp252
Posted

Oh, looks like I missed Carla's birthday...her REAL birthday, lol!

Happy Belated Birthday Carla!!

CarlaB Enthusiast
CarlaB
Posted
Oh, looks like I missed Carla's birthday...her REAL birthday, lol!

Happy Belated Birthday Carla!!

LOL, thank you. :lol:

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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