Omg...i Might Be On To Something

[Rachel--24]

To add to what I said about Lyme being multifactorial...Dr.'s who use ART are never finding just Lyme. Dr. K. finds that viruses are an issue for most Lyme patients...theres a long list of coinfections which commonly accompany Lyme. EBV is definately on that list.

None of my LLMD's rely on conventional testing alone because so many of these things are missed....especially the metals. When the alternative tests are used in conjunction with conventional...the picture becomes more clear. It becomes very obvious that noone just has Lyme and that nearly every Lyme patient has heavy metal issues as well.

[dlp252]

Kassandra,

I'll have to check out that diet, lol. I have my worst trouble at work. Stupid mocha creamers and stupid expresso machine!!!

[CarlaB]

Lyme chat starts in an hour. 8 PM EST .... Open Original Shared Link

[confusedks]

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.

A spice ship? LOL! Do you mean space ship? How much do they cost? I also was talking to my mom about joining the gym again (they have saunas, etc.), and she said she will look into it and decide if she can afford it. If we keep up with this sill Mepron, I'll never go to the gym!

Kassandra,

I'll have to check out that diet, lol. I have my worst trouble at work. Stupid mocha creamers and stupid expresso machine!!!

Yea, that's hard. I used to be the same way at school. I could never manage to stick to any diet there. When everyone was eating whatever they wanted, I would feel terrible and deprived if I was eating cucumbers at lunch instead of chips. LOL!

That's funny though because coffee gives me such a terrible reaction that I don't think I will ever be able to drink it again! It makes me get really hypoglycemic and crash hard! Also, if there is any casein in the creamers, I would be dead! LOL! I CANNOT do dairy of any sorts, or I will have a migraine the next day.

[CarlaB]

No, I meant a spice ship! That's what Rachel calls her portable sauna .... I think it's around $300.

The one at the gym will be a regular sauna, which isn't as good for detox .... you should read about the difference .... but you should still join the gym for the exercise. I used the sauna at the gym once ... it really is different.

[confusedks]

I think it would make me claustrophobic! What's the difference between a sauna and the steam room thing? They have both at the gym I went to and it got all kinds of nasty toxins out of my body (the steam one I mean).

[CarlaB]

Kassandra, your head is not inside the spice ship, so you shouldn't get claustrophobic!

Read up about the difference between steam rooms, regular saunas, and FIR saunas. You remove more toxins with the FIR sauna.

[Rachel--24]

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.

Kassandra,

If you were to go back to my posts from when I first started learning about Lyme and started this whole process....you will see ALOT of denial. I went back and forth for MONTHS as I continued to test and treat additional factors.

I put Lyme in the closet.

The more I learned the more I understood that its a piece of my puzzle and accepted that.

My gut instinct at that time was that even if I DO have Lyme...I dont think its whats making me so sick. That was my main reason for kind of putting it on the back burner and continuing with testing. I felt then as I do now...that going ahead with aggressive treatment for Lyme would have been disastrous for me as it wasnt my main issue.

Thats why I think its important to get a full picture and treat accordingly.

I do think that in your case Lyme is a bigger issue.

As far as detox. I think when we are overwhelmed with toxins it can be very difficult starting out.

Its important to do everything you can to help your body...but at the same time know your limitations. Basically listen to your body....dont push yourself trying to do more than what you can handle.

I had a hard time with that because I tend to want to go full force.

My Dr.'s put most of the focus on detox in the beginning. There was no aggressive treatment until my body could handle it. They were wanting to avoid the herxing and the feeling bad. Even though it does mean that treatment is working as far as killing the bugs...it also means that your body is struggling with the toxins and this creates a huge burden in itself.

Every Dr. does things differently but u will definately benefit from detox stuff as long as you go slow with it and dont overwhelm your system by doing too much.

In the beginning the sauna was too much for me....every little thing was too much and the one thing my Dr.'s drilled into me was GO SLOW. I finally learned after having more than one bad experience with racheling my detox treatments.

Just listen to your body.

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! 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.

I dont think that theres anything wrong with putting your focus on your health. I think I was pretty much obsessed for the past couple years. I actually didnt WANT to do anything else. I wanted to focus on getting better because I didnt enjoy life with so many restrictions and just plain feeling sick all the time.

I researched, researched a little more...and then did even more research.

It made me feel better to really feel like I had an understanding of all this craziness...and that made me feel more in control...like I knew what direction I needed to go.

So yeah...I let it take over my life completely. I lived on the computer and on this thread and I know that it was the BEST way for me to deal with this. I always knew the fun stuff would come back into my life but first I had to deal with my health.

I finally feel like I'm more and more getting a little bit of my life back.....hence my disappearing acts.

I still have alot of work to do but I'm no longer spending ALL of my time on this...I actually think about other things now!

Eventually, when you start feeling better and are comfortable with your treatments, etc...you will partipate more in the regular life activities.

Some people prefer to not let it take over their lives....but if you're alot like me I think thats ok too. Whatever feels "right" to you....whatever makes you feel better about things. Theres no right or wrong way to handle something like this.

[CarlaB]

Rachel denial? Lyme in the closet? Really??? Is that true??? :lol: :lol:

[Rachel--24]

No, I meant a spice ship! That's what Rachel calls her portable sauna .... I think it's around $300.

Yeah...my spice ship was $300 and I can take it back and forth between my house and my moms if I want to...it folds up.

LOL...I guess spice ship looks like a typo for those who werent around when we had the spice names.

I agree with Carla...FIR sauna is much better...much more effective at removing toxins.

I used to go to the gym sauna...sweating is good in general but the FIR sauna actually pulls toxins from the tissue...there is a much greater amount of mercury and other toxins coming out when using a FIR sauna. The other sauna will produce just as much sweat....but it'll be almost all water with a very small amount of toxins.

Since it draws out metals and other toxins it can cause problems if done too aggresively....especially if mercury is an issue.

[Rachel--24]

Rachel denial? Lyme in the closet? Really??? Is that true??? :lol: :lol:

I think I was the queen of changing my mind and conveniently "forgetting" certain factors...seemed like everyday I had a new theory.

[aprilh]

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

Thanks! That's Aiden, my little one.

Neti pot and Xlear has solved all of my sinus problems!

[aprilh]

Questions!!!

Kassandra,

What kind of stool test did you do and what lab was it? That sounds very informative and I am thinking about getting something like that done since I never have.

People don't understand my need for research and learning either. Sometimes they say that its my focus on research that makes me "sick" when its actually the other way around. In general most people just don't understand at all. I just decided that I was going to do what I know is right and good for me and I try not to worry about their opinions.

I am like Rachel - I like to research and research and learn and learn. Its all very complicated and every doc seems to have their own way or opinion on how to get better. One way doesn't always work for everyone.

Rachel,

What other testing did you have besides ART that found all the other issues other than lyme going on? I am a little concerned this new doc will not be as thorough. I would like to be prepared before I start any treatments.

FIR Sauna question. I have been just going to the regular sauna at the gym and I notice that it does help me although the FIR sounds more productive. When you started were you able to deal with the toxins it pulled? How often did you do it when you started and how often do you do it now?

That's all I can think of for now

April

[Rachel--24]

Theres alot more stuff I want to reply to and hopefully will have time this weekend.

Heres my update.

Another sucky IV experience last night.

Well...this time I stayed awake....I wasnt drugged by pizza prior to my appt....so that was good.

There was a problem with the IV...she got into the vein but the line wasnt clearing and there was no drip. She couldnt figure out why so adjusted the needle and gave the IV more gravity...then it started to work. Unfortunately , even though it was working I was hurting...it wasnt feeling right at all.

There was a couple other times it felt uncomfortable at first but then was fine...this time it wasnt getting better. I told her it hurt and asked her to make sure the needle was in ok...cause last time it came out and got into my tissue. She said it was in the vein and put a heating pad over my arm to help ease the discomfort.

It hurt the entire time.

Also, I spaced out yesterday and totally forgot what time I needed to leave work for my appt...so I was late. They close at 5 so I have to be there at least 3 hours before that since its a slow IV...but I was late.

So around 4:30 she sped up the drip a tiny bit and this made the pain WAY worse. Plus the magnesium going in at a faster rate caused reaction...so I got the numbness/tingling in my mouth and on my lips. Yeah...it was alot of fun...let me tell you.

So when I only had a few minutes left I couldnt handle the pain anymore...it was intolerable so I asked her to pull the IV. When she lifted the heating pad we both saw that my arm was totally red and swollen. She said "Oh God".

So yeah...the needle had come out again...she said probably in the last 15 minutes...otherwise if the whole bottle had gone in that way there would be a massive lump.

It was worse than last time though...but I didnt feel the itching and swelling because of the heating pad being on it. I felt it as soon as she lifted the pad.

I think what might have caused all of this is that I've gained over 10 lbs. since Xmas (Yay!) and I wear 3 or 4 layers of shirts and turtleneck to work because...well... its cold in the dairy dept!

Its always tight when I bunch up my sleeves for the IV....they always joke that I dont need a tournequet (sp?). We usually smooth out the material so its not too tight. I think the weight gain makes it even tighter...so yesterday it felt super tight and I couldnt get it to loosen up.

I think it may have been cutting off circulation a little. I know that towards the end of my IV I tried to adjust the sleeves a little and at that point the needle hurt even more so I stopped trying to mess around with it. I think the pressure from that might have caused the needle to come out.

By the time I asked her to pull the IV and we saw the swelling....all of my arm was feeling swollen from where the sleeves were bunched all the way down to my hand. So I think my sleeves were too tight! My hand felt really fat and I couldnt make a fist....reminded me of how I'd feel when I still ate processed foods and woke up every morning with fat numb hands.

My arm is still very sore.

From now on I'm gonna have to wear looser clothes on Fridays!

Next time I get my mineral IV we will be increasing. She said there are steps...and I am only on step one. I think she said it goes up to step 5....each step increases the amount of minerals in the IV. So next time I go to step 2.

Also...I started taking Alinia today.

Its an expensive drug!! Good thing my insurance covers alot of it. I only have 6 pills...2 a day for 3 days. In 3 weeks I do it again.

Its only been a couple hours since my first pill....the only thing I'm noticing is some rumbling in my tummy....oh and bright yellow pee.

I read alot about Alinia. I guess it kills the parasites by shutting down enzymes that allow for the parasites to live. It makes it so that they cannot survive...their environment becomes totally toxic.

Its probably like taking away oxygen for us...we wouldnt be able to live without it.

So hopefully I notice some improvement after this treatment.

My tummy is getting louder....my friend said Cobra is screaming. We actually feel bad for him!!

[Rachel--24]

Sorry...duplicate post.

I'll take this opportunity to say what a cute pic of your boy April!

[aprilh]

Theres alot more stuff I want to reply to and hopefully will have time this weekend.

Heres my update.

Another sucky IV experience last night.

That sounds a bit scary to me!! You'll have to scale it down to one shirt before your appt!

Did the swelling go down? Does that basically make the chelation useless since it didn't go in your vein?

[confusedks]

April,

I had a full GI panel stool test done through Metametrix. I think you can google them and get more info on the lab itself.

Rachel,

Ouch! I am sorry your IV went the what it did. I have had awful IV experiences, hence the PICC line.

[AndreaB]

Rachel,

Sorry for the awful IV experience.

Hope the alinia goes well for you.

[aprilh]

Sorry...duplicate post.

I'll take this opportunity to say what a cute pic of your boy April!

We must have been posting at the same time.

Thank you!!

[Rachel--24]

Rachel,

What other testing did you have besides ART that found all the other issues other than lyme going on? I am a little concerned this new doc will not be as thorough. I would like to be prepared before I start any treatments.

FIR Sauna question. I have been just going to the regular sauna at the gym and I notice that it does help me although the FIR sounds more productive. When you started were you able to deal with the toxins it pulled? How often did you do it when you started and how often do you do it now?

I had several tests which identified fungal issues as a major burden. That was BioSET, ART, kinesiology and a blood antibody test from immunosciences lab. I was only positive for yeast in one stool test....out of 4.

I had a stool test which came back positive for C. Diff a couple years back.

The traditional kinesiology picked up a few issues that didnt show up in ART...viruses and bacteria.

Provoked urine test confirmed metals.

I've had blood tests for things like EBV, Herpes viruses, CMV, etc. None of those were issues and havent shown up in any alternative tests yet either.

I had a bloodtest for Aspergillus...which was neg. but positive in BioSET, ART and kinesiology.

I've been tested for geopathic stress and EMF stress with both ART and regular muscle testing.

Thyroid testing, Vit/min deficiencies, CDSA....and lots of other stool tests.

I have a list of essential tests that one of my Dr.'s recommends. I posted it on YC before...its somewhere in this thread too. I'll have to find it and I'll post it again.

When I first started I wasnt able to deal with *any* kind of detox...every little bit caused my head to swell and I felt bad.

My Dr. only wanted me to do the sauna for like 5 minutes...he wanted me to increase slowly and I think he only wanted me doing it a couple times a week. Now I can do it much longer...last time was like 45 minutes. I can do it more often but not on the days close to when I have chelation.

It also depends on how many other things you're doing because each thing which causes any mobilization of toxins contributes...so they can be cumulative. If you're doing a bunch of things all at once...you can easily overwhelm your system. Also supplements which are for detox contribute to what is getting moved around.

I went very slow and couldnt tolerate doing more than one thing in the same day.

I still dont do as many saunas as I probably could....I just do it if I feel really toxic. I'm mainly just letting the DMPS treatments take a load off first...then later I can be more aggressive with the other stuff. I think right now the DMPS is pretty big for me....and I also want to add in the TD-DMPS...so with that and a few supplements I think my body is handling things ok.

I also think getting rid of parasites will take a big load off...hopefully my body will detox more efficiently after that...then if I feel good about it...I can probably do more saunas and things.

I dont do coffee enemas at all anymore. I havent done any enemas but I probably will do warm water while I'm on the Alinia...and after.

[Rpm999]

how is bioset different from art? there's a bioset practitioner near me and i'm wondering if maybe they do art there as well, but how did the bioset turn out for you, was it a great help?

[moldlady]

Theres alot more stuff I want to reply to and hopefully will have time this weekend.

Heres my update.

Another sucky IV experience last night.

Well...this time I stayed awake....I wasnt drugged by pizza prior to my appt....so that was good.

There was a problem with the IV...she got into the vein but the line wasnt clearing and there was no drip. She couldnt figure out why so adjusted the needle and gave the IV more gravity...then it started to work. Unfortunately , even though it was working I was hurting...it wasnt feeling right at all.

There was a couple other times it felt uncomfortable at first but then was fine...this time it wasnt getting better. I told her it hurt and asked her to make sure the needle was in ok...cause last time it came out and got into my tissue. She said it was in the vein and put a heating pad over my arm to help ease the discomfort.

It hurt the entire time.

Also, I spaced out yesterday and totally forgot what time I needed to leave work for my appt...so I was late. They close at 5 so I have to be there at least 3 hours before that since its a slow IV...but I was late.

So around 4:30 she sped up the drip a tiny bit and this made the pain WAY worse. Plus the magnesium going in at a faster rate caused reaction...so I got the numbness/tingling in my mouth and on my lips. Yeah...it was alot of fun...let me tell you.

So when I only had a few minutes left I couldnt handle the pain anymore...it was intolerable so I asked her to pull the IV. When she lifted the heating pad we both saw that my arm was totally red and swollen. She said "Oh God".

So yeah...the needle had come out again...she said probably in the last 15 minutes...otherwise if the whole bottle had gone in that way there would be a massive lump.

It was worse than last time though...but I didnt feel the itching and swelling because of the heating pad being on it. I felt it as soon as she lifted the pad.

I think what might have caused all of this is that I've gained over 10 lbs. since Xmas (Yay!) and I wear 3 or 4 layers of shirts and turtleneck to work because...well... its cold in the dairy dept!

Its always tight when I bunch up my sleeves for the IV....they always joke that I dont need a tournequet (sp?). We usually smooth out the material so its not too tight. I think the weight gain makes it even tighter...so yesterday it felt super tight and I couldnt get it to loosen up.

I think it may have been cutting off circulation a little. I know that towards the end of my IV I tried to adjust the sleeves a little and at that point the needle hurt even more so I stopped trying to mess around with it. I think the pressure from that might have caused the needle to come out.

By the time I asked her to pull the IV and we saw the swelling....all of my arm was feeling swollen from where the sleeves were bunched all the way down to my hand. So I think my sleeves were too tight! My hand felt really fat and I couldnt make a fist....reminded me of how I'd feel when I still ate processed foods and woke up every morning with fat numb hands.

My arm is still very sore.

From now on I'm gonna have to wear looser clothes on Fridays!

Next time I get my mineral IV we will be increasing. She said there are steps...and I am only on step one. I think she said it goes up to step 5....each step increases the amount of minerals in the IV. So next time I go to step 2.

Also...I started taking Alinia today.

Its an expensive drug!! Good thing my insurance covers alot of it. I only have 6 pills...2 a day for 3 days. In 3 weeks I do it again.

Its only been a couple hours since my first pill....the only thing I'm noticing is some rumbling in my tummy....oh and bright yellow pee.

I read alot about Alinia. I guess it kills the parasites by shutting down enzymes that allow for the parasites to live. It makes it so that they cannot survive...their environment becomes totally toxic.

Its probably like taking away oxygen for us...we wouldnt be able to live without it.

So hopefully I notice some improvement after this treatment.

My tummy is getting louder....my friend said Cobra is screaming. We actually feel bad for him!!

Rachel,

This is moldlady from the YC. I'm so sorry to hear about your trials! But on the flip side you have been a wealth of information for so many people that are struggling with health issues. I have not been through all the tests that you have had so you can help so many along those lines. I was tested at Mayos for everything they had back in 1990 and they came up with nothing. I was still not feeling well and my counts were low in some areas and high in others but not bad enough to diagnose anything. Basically they sent me away with nothing and said to come back when I was worse. So, I started on a trek to find out how to do everything natually.... not easy by any means and a long road to wellness.

You are so young to have had all these problems. When I was your age, I thought I was healthy. Now I realize I was an accident waiting to happen....

Take care, and I hope you are feeling better.......

moldlady

[Rachel--24]

Did the swelling go down? Does that basically make the chelation useless since it didn't go in your vein?

It wasnt chelation. Chelation has been really easy. I'm only there for 20 minutes at the most. This was my IV minerals....its a slow IV...2 1/2 hours. Its for replacing minerals that are lost during chelation.

The swelling went down pretty quickly...its just sore now. The minerals still get absorbed. Heat helps with the absorption...so I stayed an extra 15 minutes with the heating pad over it.

[Rachel--24]

Rachel,

This is moldlady from the YC. I'm so sorry to hear about your trials! But on the flip side you have been a wealth of information for so many people that are struggling with health issues. I have not been through all the tests that you have had so you can help so many along those lines. I was tested at Mayos for everything they had back in 1990 and they came up with nothing. I was still not feeling well and my counts were low in some areas and high in others but not bad enough to diagnose anything. Basically they sent me away with nothing and said to come back when I was worse. So, I started on a trek to find out how to do everything natually.... not easy by any means and a long road to wellness.

Hi moldlady...nice to see you here.

I had all the conventional tests too...tons of bloodwork, CT scans, colonoscopy, endoscopy, ultrasounds, MRI...x-rays and all the testing for various diseases...NOTHING ever showed up.

I've had much better luck with my current Dr.'s.

Its definately been a rough road but I'm actually doing much better recently. I've made the most improvement since I started chelation a couple months ago. Lots of good things are happenning!

You are so young to have had all these problems. When I was your age, I thought I was healthy. Now I realize I was an accident waiting to happen....

Take care, and I hope you are feeling better.......

Thanks....I hope you stick around. Lots of really nice people here.

I'm probably older than you think...24 is my favorite number...not my age.

But yeah...I did think I was very healthy at 24...and all through my 20's...little did I know what was in store for my 30"s!!

A real wake-up call for sure.

[confusedks]

So I decided to watch Ina Garten on Food Network and she went on a trip to Paris. Well, stupid me...I was then getting really annoyed that I may not ever be able to go out of town and just eat whatever I want! LOL! I may not have Celiac, but since I am still reacting to gluten and it runs in the family, I am wondering if I do. Ugh, I used to travel all over...when I went to Paris, I had the BEST crepes! Ugh...so much for that! LOL!

Just had to vent! LOL!

Andrea and Julie,

Do you guys make sure your shampoo, conditioner, etc. is all gluten free? I haven't bothered to really deal with that because it seems too daunting, lol. But since I am still off the charts for gluten, I am wondering if I need to get REALLY strict!?