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Omg...i Might Be On To Something

Rachel--24

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confusedks Enthusiast
confusedks
Posted

Carla,

Yea, sleep has been horrible for me lately. The problem is that I have been waking up around 12 noon, but I'm supposed to be at my uncles house by 12! LOL! :o:lol:

I wish I could have milkshakes for dinner! :P I am on day 3 of no sugar! I am actually shocked at how little die-off I have been feeling. I tried this about a week ago, and I thought I was going to die.

Andrea,

I hope you feel better soon!!

Rachel,

Insomnia has never been a problem for me, except when I'm not busy. It's not a Lyme symptom of mine like it is for Carla. When I was in school, I NEVER had a problem falling asleep. I think it's mainly because I sit around and don't do much, so I can't fall asleep. I don't have enough energy to get tired, if that makes sense? :P:lol:

Anyone/Everyone,

I got the sulfite test strips...and I don't know what they mean! All I know is it was at the highest level possible. "Over 1600". Does anyone know what that means? I think that is the measurement of my pH, but I really don't know.

Dr H wanted me to get them so I could see if I had a sulfur/sulfate detox problem.

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AndreaB Contributor
AndreaB
Posted
I got the sulfite test strips...and I don't know what they mean! All I know is it was at the highest level possible. "Over 1600". Does anyone know what that means? I think that is the measurement of my pH, but I really don't know.

Dr H wanted me to get them so I could see if I had a sulfur/sulfate detox problem.

I don't know what the numbers mean but I'll be very curious to find out when you do.

dlp252 Apprentice
dlp252
Posted

Okay, where does one get the test strips?

AndreaB Contributor
AndreaB
Posted

Hubby and my 10 year anniversary is coming up next week. We haven't celebrated our anniversary, aside from me making cake, all the years we've been married. I'm pretty sure mom is available to watch the kids so we are going to try and figure out what we want to do, safe restaurants to eat at, etc.

Those of you on MyS will have a clue as to why we haven't celebrated in the past. Those not on MyS who want to know some of what we've gone through, I can email it to you.

I am feeling a little bit better today.....course I haven't had anything to eat, which I think has helped too.

AndreaB Contributor
AndreaB
Posted
Okay, where does one get the test strips?

Yes, that is a good question. :)

Called my doctor today to see if they had any recommendations for a doctor in this area for us to go to if needed. His wife needs to ask him. She said they'd be willing to see us on long holiday weekends and such so hubby wouldn't need to take time off work. We really only need to have the children seen once a year so that shouldn't be a problem. It's just if we need someone if an illness or something comes up.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Anyone/Everyone,

I got the sulfite test strips...and I don't know what they mean! All I know is it was at the highest level possible. "Over 1600". Does anyone know what that means? I think that is the measurement of my pH, but I really don't know.

Dr H wanted me to get them so I could see if I had a sulfur/sulfate detox problem.

Yeah...I posted alot of scientificness about this several pages back.

It most likely means that your body is having difficulty converting sulfur/sulfite to sulfate....which would result in significantly impaired detoxification of heavy metals and other toxins. It means that your sulfation pathway (major detox pathway) is impaired.

I havent taken this test myself...but I believe that a high level of sulfites in the urine does indicate a problem with that pathway.

Have you had your RBC copper levels checked...because elevated copper is one cause for the body to lose its ability to convert sulfur to sulfate.

Another reason is mercury......it can affect sulfur metabolism directly because of its strong attraction for all sulfur compounds...and it can have an indirect effect by disrupting copper metabolism as well as blocking critical enzyme systems.

I posted alot about sulfite issues when I was posting about molybdenum....so if you're interested you can do a search for those posts.

Basically a deficiency of molybdenum can impair 3 important enzymes which rely on it as a cofactor. One of those enzymes (and the most important for good health) is the sulfur oxidase enzyme.

Too much copper in the body can "bump out" the molybdenum...causing a deficiency. If the molybdenum is not available the sulfur oxidase enzyme does not function. This would cause sulfite to build up and thus show up in high levels in urine tests.

Under normal circumstances (when this enzyme is not impaired) the sulfite gets converted to sulfate....which is much needed for the sulfation pathway to function and it is also needed to keep the gut healthy. A deficiency of sulfate leads to problems with detoxification and it can also lead to additional issues such as leaky gut.

the enzyme catalyzing the reaction from sulfite to sulfate is a molybdenum dependant enzyme. If you suspect your patient has sulfite sensitivity, a simple sulfite urine test (sulfite dipsticks are available from Meridian Valley Labs) will allow you to confirm this.

If positive, consider supplementing the patient with the necessary co-factor molybdenum. Monitor the patient

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Okay, where does one get the test strips?

Here's one link. I think there is where Kassandra got hers. (they also strips to measure sulfate in the urine)

Open Original Shared Link

I have another link to a different lab...I have to go find it though. :)

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CarlaB Enthusiast
CarlaB
Posted

I have had a 99.2-99.6 degree fever every day for about five days now ..... do you think my immune system has finally figured out I have a bacterial infection? Do you think this is a good thing? It sure is making it difficult to get anything done .... it's really dragging me down.

You will be happy to know I did wash my hair today though ... and if I'm going to eat dinner, I will go to Whole Foods .... but I'd certainly rather go back to bed. Ugh.

Andrea, I posted a comment on MyS.

AndreaB Contributor
AndreaB
Posted
I have had a 99.2-99.6 degree fever every day for about five days now ..... do you think my immune system has finally figured out I have a bacterial infection? Do you think this is a good thing? It sure is making it difficult to get anything done .... it's really dragging me down.

Could be. You've been sick a couple times this year, so I would take that as your immune system coming back.

Is Whole Foods close by? I don't blame you for not wanting to go out. The bed or couch are awfully comfortable when you're not feeling well.

I read your comment, thanks. :)

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

Ok...heres the other link.

Open Original Shared Link

They have a 24 hour sulfate test (under urine tests) and they have the sulfite strips in the misc. section of the order form.

I had wanted to order the strips but didnt want to pay the $55 shipping. :o

I'm not sure what this lab charges but the first link I put up has a $55 shipping charge....and I was kinda put off by that. <_<

Anyways, I'm pretty sure the test wont tell me anything I dont already know. I react to sulfur/sulfites, I have problems with phenols and the sulfation pathway, I've had a test for uric acid which was low and now I've had the RBC test confirming high copper.

It all pretty much fits together. I might as well just assume my test results would be similar to Kassandra's at this point.

CarlaB Enthusiast
CarlaB
Posted
I read your comment, thanks. :)

I've been in a similar place. :) Though not as extreme.

Thanks for your comments. Whole Foods is about 10 min. away. I also have to take two kids to softball practice .... in my long sleeve t-shirt, long jeans, and wide brimmed hat, LOL. Stupid doxycycline! It's 81 degrees. It's breezy so I have the windows open. :D

I took a Vicodin I had left over to help me at least not be in pain so I could get out of the house. I don't normally like to take pain killers .....

Green12 Enthusiast
Green12
Posted
I wish I could have milkshakes for dinner! :P I am on day 3 of no sugar! I am actually shocked at how little die-off I have been feeling. I tried this about a week ago, and I thought I was going to die.

I got the sulfite test strips...and I don't know what they mean! All I know is it was at the highest level possible. "Over 1600". Does anyone know what that means? I think that is the measurement of my pH, but I really don't know.

Congrats on the 3 days off sugar Kassandra!! We must have started on the same day because I am on day 3 too :lol:

Hubby and my 10 year anniversary is coming up next week. We haven't celebrated our anniversary, aside from me making cake, all the years we've been married. I'm pretty sure mom is available to watch the kids so we are going to try and figure out what we want to do, safe restaurants to eat at, etc.

Called my doctor today to see if they had any recommendations for a doctor in this area for us to go to if needed. His wife needs to ask him. She said they'd be willing to see us on long holiday weekends and such so hubby wouldn't need to take time off work. We really only need to have the children seen once a year so that shouldn't be a problem. It's just if we need someone if an illness or something comes up.

How exciting Andrea, glad you are going to celebrate :D

It would be nice to find someone close to go to when needed, hope they get back to you with a referral.

Yeah...I posted alot of scientificness about this several pages back.

Most of the stuff that I posted is at least 4 weeks back.....when I was talking about the PST enzyme and sulfation pathway. I think it was too confusing for most people to follow but hopefully this gives you a better understanding.

You mean those links with the heavy duty scientificness that my eyes just glazed over on?!?! :lol::lol:

Green12 Enthusiast
Green12
Posted
I have had a 99.2-99.6 degree fever every day for about five days now ..... do you think my immune system has finally figured out I have a bacterial infection? Do you think this is a good thing? It sure is making it difficult to get anything done .... it's really dragging me down.

I don't know Carla, have you checked in with your Dr about this? I would tend not to wait, just to see if they would change anything up or offer you some suggestions.

Sorry I can't be of more help :rolleyes:

AndreaB Contributor
AndreaB
Posted
I also have to take two kids to softball practice .... in my long sleeve t-shirt, long jeans, and wide brimmed hat, LOL. Stupid doxycycline! It's 81 degrees.

That certainly doesn't sound as comfortable as staying home.

It's cool here today....55.

AndreaB Contributor
AndreaB
Posted
Congrats on the 3 days off sugar Kassandra!! We must have started on the same day because I am on day 3 too :lol:

You mean those links with the heavy duty scientificness that my eyes just glazed over on?!?! :lol::lol:

I really need to cut back on the sugar again......course it's mainly the weekend that I indulge.

My brain didn't feel like reading all of that either. :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
You mean those links with the heavy duty scientificness that my eyes just glazed over on?!?! :lol::lol:

:lol: Yeah....but Julie....I think everyone's eyes glazed over it!! :lol:

I'm not even sure if brainfog is entirely necessary for the the glazed over look to take over when it comes to that stuff. :P

I think its really important info.....probably for alot of us....but its hard to understand and I havent really found an easy way to explain it either. :unsure:

confusedks Enthusiast
confusedks
Posted

Ugh...so this is bad news?! AHHHHH! So basically I need to think about what I want to do if Dr H doesn't know exactly what to do with this. I am really bummed out! <_<:angry: I might be thinking about a visit to Dr Amy after all.

Yeah, I know you posted a bit about this a while ago Rachel, but my Lyme brain could NOT handle it! LOL! :lol:;)

So, in theory I need to look into metals and having a RBC mineral thing done. Is that the exact name if it?

We paid $38 for the strips and $55 for shipping! :o It was overnighted from Germany and had to be kept cold...

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
My brain didn't feel like reading all of that either. :lol:

Seeeee. :lol:

tabasco32 Apprentice
tabasco32
Posted

Hey everyone!

How are you today? Well I went to National Prayer Day in Selma California. There is about 22,000 people that live their. I live in a smaller town. So the prayers were wonderful and my pastors were their, so Praise God. What a nice day to.

Anyways just writing to tell you all high. Oh and no more constipation. :)

AndreaB Contributor
AndreaB
Posted
Anyways just writing to tell you all high. Oh and no more constipation. :)

Great news! :D

Kassandra,

If you guys can swing it I'd highly recommend a visit to Amy. Believe me, we'd see Dr. E more than once a year if we could afford it. They prefer 2x a year anyway.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Yeah, I know you posted a bit about this a while ago Rachel, but my Lyme brain could NOT handle it! LOL! :lol:;)

I know....I saw alot of posts back then that were kinda clueing me in that the scientificness was too much. ;)

So, in theory I need to look into metals and having a RBC mineral thing done. Is that the exact name if it?

It was a red blood cell test from Dr.'s Data. Heres the link.

Open Original Shared Link

I'd be interested to see what Dr. H.'s recommendations are. I havent really had any of my Dr.'s focus in on this issue....not until now anyways. Its just something I started to piece together on my own and then I've been discussing it all with my Dr.'s the past couple months....and getting the right tests done to confirm what I was thinking.

Of the two Dr.'s I'm seeing right now Dr. Amy probably has a better understanding of all this but I've still had to figure out what tests to get done on my own. I dont get to see her again until June and my visits with her are more productive when I have some things figured out in the meantime.

Besides the RBC test you might want to ask Dr. H. about a porphyrin test (to see if heavy metal toxicity might be an an issue) and a hair analysis (if you havent had one yet).

My LLMD ordered the porphyrin test for me but I cant take it until I get over my cold. You dont have to take a chelator for the porphyrin test....its a totally different way of looking for toxicity. Its not looking for metals in the urine...its looking for specific porphyrins that metals would cause to be elevated in the urine.

I'm still in the process of figuring all this out myself so I'd be really curious to see how Dr. H. proceeds...what additional tests or supplements he might recommend for you.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Ugh...so this is bad news?! AHHHHH! So basically I need to think about what I want to do if Dr H doesn't know exactly what to do with this. I am really bummed out! <_<:angry: I might be thinking about a visit to Dr Amy after all.

I know that you dont wanna have additional things to worry about/focus on....BUT....the brightside (yes, there is one ;) ) is that you're getting these things figured out early on.

The more you KNOW...the better chance of recovering....and in less time than it would take if you were unaware of these things.

You definately have an advantage when you have a Dr. who is running different tests to see what types of things might be going on. Its not all about killing bugs...it never is...theres always the other things to think about as well.

For me its always an exciting thing to find out one more piece that was missing....because with each discovery you are that much closer to recovery. Just try not to get overwhelmed and address each thing as it comes....and know that in doing that you're "fixing" all of the little things that got "broken" and you're making it harder for the Lyme to survive in your body. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Oh and no more constipation. :)

Good news Lisa! :D

CarlaB Enthusiast
CarlaB
Posted
I don't know Carla, have you checked in with your Dr about this? I would tend not to wait, just to see if they would change anything up or offer you some suggestions.

No, I haven't called. This is normal for a herx reaction. At your first appt. they give you a sheet with info about meds and general info about herxes, etc. At this point, I know what they'd tell me .... a normal reaction to the bugs dying off. :) My doc is one to be heavy with treatment. Kind of a different philosophy than most of the docs on this thread.

I mean, he wouldn't let things get bad enough to put me in danger, but discomfort is bound to happen with a new medication. :)

Hey everyone!

How are you today? Well I went to National Prayer Day in Selma California. There is about 22,000 people that live their. I live in a smaller town. So the prayers were wonderful and my pastors were their, so Praise God. What a nice day to.

Anyways just writing to tell you all high. Oh and no more constipation. :)

Sounds nice. Now we know the cure for constipation! Next time someone asks, the answer is prayer. :D
Ken70 Apprentice
Ken70
Posted

Chlorine Dioxide - I wrote about this earlier this week. It's also called MMS or Miracle Mineral Supplement. I really want someone else to try this stuff. Someone who suffers from Lyme preferably and or serious brain fog from candida. I need to know if my results are pschosymatic. I am having a more than positive experience with what it has done for my mental state. One of the theories about what it does is that it binds with the toxins that cause the brain fog and the herxing effect. My honest opinion is that I think it does. It's a real leap of faith to drink this stuff when it smells just like chlorox but I've been doing it for a week now without any even slight negative reaction other than a bit of quisyness (sp?) once.

Detox Foot Pads - I have used them for several nights now and each morning the pads look the same if not worse. I thought I would start to see them lighten up a bit but I haven't. I will continue to use them for a while to see if this happens. If it does than there might be something to it. The pads could also be contributing to my clarity of mind.

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