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Rachel--24

Omg...i Might Be On To Something

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All of these threads have me thinking heavy metal toxicity may be a real problem for me :angry:

Thanks to all you who post for helping me be a good detective in trying to resolve my health issues!!! :rolleyes:

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Mia,

Hope you feel better soon!!!

Paula,

I may be almost as anxious as you to see the results of your hair analysis. :P

Everyone,

I started the Tindamax and Amphotericin-B (anti-fungal) last night. So far so good. I think I was more worried about the antibiotic making me sick than the herx caused by it, lol. So now I just have to try to minimize any herxing it may produce.

They shipped the antifungal in a regular ole box...there is a label in huge print that says to keep it refrigerated! :angry: The instruction sheet that came with it said that it COULD be left unrefrigerated if used up within 1 week--I'm supposed to take it for 14 days. <_< I'm hoping that the refrigeration thing is for after it is opened, but since it's not sealed (came in a regular little orange prescription bottle), I can't imagine how that would work. I tried calling the pharmacy in Washington, but they don't work on Fridays, and my doctor (who prescribed it) works Fridays, but only in the morning and I didn't get it until afternoon. Didn't bother to call any local pharmacies since my doctor said that most pharmacies don't carry it.

I also called Dr. S's nurse to see if either medication would interfere with my DMPS challenge on Friday...looks like the challenge is a go! YAY! :) They said the only thing that should interfere is vitamin/mineral supplements, so I just can't take those on the day of the challenge.

So a question for those who've taken Tindamax...did it cause sleeplessness? I could NOT get to sleep last night. That's usually not my problem...I fall asleep okay, but just start waking up around 1:00...and my legs were really active...it's like I couldn't get comfortable and felt like I needed to move and stretch them (I haven't had this symptom in a long time--since I've been taking lots of magnesium I think). I went to bed at 9:00 (my usual time) and finally got up at 10:40 to take an epsom salt bath. That seemed to do the trick...it seemed to calm me down enough to relax and get to sleep.

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Donna,

The Tindamax and leg thing might be a herx? Or it could be a side effect, I'm not sure.

I think I use the same pharmacy in Washington... Clark's Pharmacy? They're really nice. All of their stuff is gluten free, lol. Usually they send their stuff with cold packs. Did yours have an ice pack in the box?

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I took Tindamax but it didnt go over well AT ALL.

It was a really bad experience....not like a herx...but more like my body was REALLY reactive to it. I actually BEGGED Dr. Carrie to switch me to Flagyl....if that tells you anything. :lol:

I only took one or two doses of Tindamax because it was clearly not good for me. The pill was pink....so I figured I was reacting to the dye.

I'm pretty sure thats what it was...so it was most likely putting a burden on the PST/sulfation pathway and making me more toxic.

I still totally avoid anything with dyes...I remember being worried about the Tindamax as soon as I saw that it was pink. <_<

Flagyl wasnt a pleasant experience either...but it wasnt as bad as the Tindamax.

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I think I use the same pharmacy in Washington... Clark's Pharmacy? They're really nice. All of their stuff is gluten free, lol. Usually they send their stuff with cold packs. Did yours have an ice pack in the box?

Mr. Clark is really well informed about gluten intolerance. A long time ago I had a lengthy discussion with him over the phone. I was soooo impressed with him. We were mostly talking about Ketotifen (Clark's pharmacy was the only place to get it), gluten intolerance and leaky gut.

I'm pretty sure I probably posted the whole conversation here because I remember being really excited after talking to him. :lol:

Yeah...Donna see's the same Dr.'s as me and I know the ones at the HN clinic use Clarks Pharmacy. Dr. Amy mostly uses College Pharmacy which is another really good compounding pharmacy.

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Donna,

The Tindamax and leg thing might be a herx? Or it could be a side effect, I'm not sure.

I think I use the same pharmacy in Washington... Clark's Pharmacy? They're really nice. All of their stuff is gluten free, lol. Usually they send their stuff with cold packs. Did yours have an ice pack in the box?

Yep Clark's, nope no cold pack! It was just in a tiny little shipping box with just the prescription bottle...no cold pack. It wouldn't have been so bad if we weren't having 100 degree weather here, lol. :P

I took Tindamax but it didnt go over well AT ALL.

It was a really bad experience....not like a herx...but more like my body was REALLY reactive to it. I actually BEGGED Dr. Carrie to switch me to Flagyl....if that tells you anything. :lol:

I only took one or two doses of Tindamax because it was clearly not good for me. The pill was pink....so I figured I was reacting to the dye.

I'm pretty sure thats what it was...so it was most likely putting a burden on the PST/sulfation pathway and making me more toxic.

I still totally avoid anything with dyes...I remember being worried about the Tindamax as soon as I saw that it was pink. <_<

Flagyl wasnt a pleasant experience either...but it wasnt as bad as the Tindamax.

Wow :lol: Okay, requesting Flagyl over Tindamax is definitely saying something :P They have another internist there now, Dr. Geneveive...she's the one helping me with the neurotransmitter stuff and the one who I see mostly now. She's nice too, but my only issue is that she only works on Wednesdays and Fridays in the mornings. I didn't think of calling Dr. Carrie...if I can't reach the pharmacy on Monday I'll call Dr. Carrie. I guess it's probably too late...I've already started taking it, but if it's not effective I may have to increase the time in Tindamax since they're supposed to be taken together.

Mr. Clark is really well informed about gluten intolerance. A long time ago I had a lengthy discussion with him over the phone. I was soooo impressed with him. We were mostly talking about Ketotifen (Clark's pharmacy was the only place to get it), gluten intolerance and leaky gut.

I'm pretty sure I probably posted the whole conversation here because I remember being really excited after talking to him. :lol:

Yeah...Donna see's the same Dr.'s as me and I know the ones at the HN clinic use Clarks Pharmacy. Dr. Amy mostly uses College Pharmacy which is another really good compounding pharmacy.

:)

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All of these threads have me thinking heavy metal toxicity may be a real problem for me :angry:

Thanks to all you who post for helping me be a good detective in trying to resolve my health issues!!! :rolleyes:

Welcome Susie. :)

I responded to your post in the "celiac antibiotic cure" thread.....but just wanted to welcome you here. :)

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It was a really bad experience....not like a herx...but more like my body was REALLY reactive to it. I actually BEGGED Dr. Carrie to switch me to Flagyl....if that tells you anything. :lol:

LOL! I'm on flagyl, and it's not as bad as I thought it would be. Just really bad fatigue. Like, the only thing that sounds interesting is being in bed. But I have to babysit today, almost all day. <_< Thankfully the kids are under the weather, so they'll just watch movies all night long.

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Donna,

I hope things work out meds-wise. :)

Kassandra,

I hope the kids are good for you! :wub:

Everyone,

I think I'm allergic to the Carafate. <_< I haven't started the dorxy yet, probably will do that Monday.

Birdy

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I also called Dr. S's nurse to see if either medication would interfere with my DMPS challenge on Friday...looks like the challenge is a go! YAY! :) They said the only thing that should interfere is vitamin/mineral supplements, so I just can't take those on the day of the challenge.

I can't wait to hear about your challenge. :)

Hope you don't have a problem with either of your meds. Can't believe they didn't send a cold pack if it was supposed to be refrigerated.

I think I'm allergic to the Carafate. <_< I haven't started the dorxy yet, probably will do that Monday.

I'm sorry Birdy. :( I don't remember what that was for, but is there anything to take that is similar to that?

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Does anyone know...Dr H ordered some food intolerance testing, and I know they aren't very accurate, BUT does anyone have any idea, if I take the foods out of my diet, how long will they show up in my blood?

Kinda like...for celiac blood work, if someone cut gluten out and waited 4 days...would it make a difference?

I am on a total roll with the sulfur free diet, so I don't want to stop midstream, but I do want the blood work for food done, but I wonder if there is any point?

Kassandra, this is what I understand from my allergist: It depends on your level of reactivity to the food. A food stays in your system normally for about 4 days. Some foods the intolerance is managed or non-reactive if you only eat it every 4 days. But a food can take any length of time longer than that.

So my thought would be that if you are off the food and still react to it, that would be a sign that it is a more serious intolerance for you. If you don't react but haven't been eating it, you won't be sure about it but probably could rotate the food at least the length of time that you haven't been eating the food. (2 weeks since you ate it, could rotate every 2 weeks)

Blood work for food isn't that accurate, unless there is a change in recent years.

Sherry

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A quick note, sorry to hear some of you are feeling really bad, and hope there is relief soon. Donna, sure hope you do okay on the new meds. Carla, glad you have a break from the herx. Glad to NOT be in the heat!! LOL!

Carla, yes, you have raised issues that I have been wrestling with. I am probably going to go down to the site, maybe for a short time only. So that I can better help from a distance.

At least I have stablized very recently, and I suspect that the R/O water has made a huge difference. I noticed symptoms again as soon as I switched to bottled water when I left on my current trip.

So for a short term trip I want to make sure I cover my bases for simple food, perhaps take my R/O unit, and make sure I take my meds. I would also monitor things and come home as soon as there was an indication I was not handling things. We've talked about the expense of more trips being better, for example, my going in and out versus staying there.

I'd love to be at a better place to just go in and stay for a couple of months to help. That can't happen for sure. My main goal is to facilitate some of the people I have trained to go in, but I haven't trained them yet in disaster relief. My goal is to train them and get materials in their hands so they can train others, and then be a support to them as they get started doing the caregiving.

Anyway, that's my current thoughts.

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Gosh Birdy, hope you aren't allergic!!

Sherry, it's a wonderful thing you are doing!

Everyone,

I just got back from a tea party. It was really fun. The one of the ladies in the ensemble I sing with hosted at her house. She has the most beautiful house and garden, so we sat outside in her garden and had (well I didn't have much, lol) the most scrumptous looking food--I just watched that part, lol. Her husbamd dressed up in tux (minus the jacket cuz it's darned hot here, lol) and he and her kids served us. I didn't eat (just a little fruit) and I didn't have tea, lol. :lol: I brought my own dessert, which was a Think Green bar and drank water, but it was still fun to exeperience it through everyone else.

Tomorrow is a pool party at another one of the ladies' homes...I'm probably going to skip that one because it starts kind of late for me on a Sunday.

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Uggghhh... today's been a bad day. :( Terrible D all day (liquid and yellow, and my hemorrhoids are acting up :ph34r: :ph34r:). I'm still not sure what caused it. I had a couple gluten-free oats a few days ago... and a small amount of dairy two days in a row. On the other hand it could be the sucralfate.

I'm pretty certain I'm allergic to the sucralfate. :( This last time I took it I noticed my tongue and the back of my mouth swelled a little for about 5-10min. Not a big deal in itself, but I thought I noticed something similar the last 2-3 times I took it. So it would be getting worse.

I wonder if it's the alluminum in it? :blink:

I am really not looking forward to telling Dr. S about this. :(

Sherry,

I hope you're able figure out a way to help without regressing. :wub: :wub:

Donna,

Sounds like an amazing tea party! :lol:

Birdy

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Guest LittleMissAllergy

Does anyone know how to interpret a CBC, or how lyme affects people's CBC?

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Donna,

That sounds like a nice tea party. Glad you enjoyed yourself. :D

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A quick note, sorry to hear some of you are feeling really bad, and hope there is relief soon. Donna, sure hope you do okay on the new meds. Carla, glad you have a break from the herx. Glad to NOT be in the heat!! LOL!

Carla, yes, you have raised issues that I have been wrestling with. I am probably going to go down to the site, maybe for a short time only. So that I can better help from a distance.

At least I have stablized very recently, and I suspect that the R/O water has made a huge difference. I noticed symptoms again as soon as I switched to bottled water when I left on my current trip.

So for a short term trip I want to make sure I cover my bases for simple food, perhaps take my R/O unit, and make sure I take my meds. I would also monitor things and come home as soon as there was an indication I was not handling things. We've talked about the expense of more trips being better, for example, my going in and out versus staying there.

I'd love to be at a better place to just go in and stay for a couple of months to help. That can't happen for sure. My main goal is to facilitate some of the people I have trained to go in, but I haven't trained them yet in disaster relief. My goal is to train them and get materials in their hands so they can train others, and then be a support to them as they get started doing the caregiving.

Anyway, that's my current thoughts.

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Everyone,

I just got back from a tea party. It was really fun. The one of the ladies in the ensemble I sing with hosted at her house. She has the most beautiful house and garden, so we sat outside in her garden and had (well I didn't have much, lol) the most scrumptous looking food--I just watched that part, lol. Her husbamd dressed up in tux (minus the jacket cuz it's darned hot here, lol) and he and her kids served us. I didn't eat (just a little fruit) and I didn't have tea, lol. :lol: I brought my own dessert, which was a Think Green bar and drank water, but it was still fun to exeperience it through everyone else.

Tomorrow is a pool party at another one of the ladies' homes...I'm probably going to skip that one because it starts kind of late for me on a Sunday.

Donna, Sounds like an great time, Im so jealous. I had a great day at soccer games at the park tho lol. my boys were scoring machines lol

Everyone,

Im going to be very busy the next three days. I have 3 graduations, birthday party at the kids school and an field and track day. We also start demolotion on the porch tuesday. I really hope i continue having days like I have had the last few days, to get everything done that i need done lol.

I will come in and post when i get my hair test. I cant wait.

I forgot to post that i took my ring in and it was the whole head that needs to be replaced. Founr hundred bucks to fix it to. I am not happy about that lol

paula

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Uggghhh... today's been a bad day. :( Terrible D all day (liquid and yellow, and my hemorrhoids are acting up :ph34r: :ph34r:). I'm still not sure what caused it. I had a couple gluten-free oats a few days ago... and a small amount of dairy two days in a row. On the other hand it could be the sucralfate.

I'm pretty certain I'm allergic to the sucralfate. :( This last time I took it I noticed my tongue and the back of my mouth swelled a little for about 5-10min. Not a big deal in itself, but I thought I noticed something similar the last 2-3 times I took it. So it would be getting worse.

Hope you feel better soon! I have a couple of things I'm not looking forward to telling my LLMD, lol.

Does anyone know how to interpret a CBC, or how lyme affects people's CBC?

Is CBC the standard blood panel that most doctor's run? :unsure: Um, I think I just had one. Yep, it's a CBC that I had as part of my annual physical. For the most part my levels seem to be within range, but my lymphocytes have been really, really low for the last two years, and this year my neutrophil was way high. Last year I looked up lymphocytes on the internet and it seemed like it was related to infection in my case. Since I have chronic infections in my body, I'm sure that's what it is. That seems like it could be either directly or indirectly related to lyme. In my case though, I actually have infections in my digestive and intestinal tracts, so it could be that too. I haven't gotten around to looking up neutrophil yet. :P

I've also read (I think I'm remembering correctly) on LN that lyme can affect cholesterol, but I haven't read any studies on that. My creatinine was really, really, low, but not sure what that means...that's one of the things I have to ask my LLMD when I see him...my regular doctor wasn't much help with that.

Donna, Sounds like an great time, Im so jealous. I had a great day at soccer games at the park tho lol. my boys were scoring machines lol

Yeah, definitely pop in when you can especially if you get your results back. Yay on the scoring machines! :lol:

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Okay, that's two nights in a row now that I haven't been able to get to sleep. Last night wasn't quite as bad as the night before and once I finally got to sleep I slept pretty well. The legs weren't as restless, so that's good. I've been having a little bit of pain in the intestinal area, but I think that's probably normal for both the antibiotic and the anti-fungal. So far so good still....still no signs of serious herxing. Yay!

Rachel, can you remember how you felt after your DMPS challenge? The nurses said that sometimes people feel kind of bad afterwards so suggested I do it on a Friday so I have a weekend to recover if necessary.

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Anyway, that's my current thoughts.

Makes good sense Sherry. :)

Does anyone know how to interpret a CBC, or how lyme affects people's CBC?

Mine has always been very normal, that is one of the reasons no one ever believed I was sick.

Well, this new drug combo is GREAT! I'm doing SO much better. The PA was right, we were treating the wrong thing. I didn't get the day 4 herx. I know I'll feel bad during my regular flare, but that's always to be expected. I'm starting to feel more normal again, I'd say up to 85% now. :D It's amazing how a good, well-trained person knows what to look for. The PA noticed some symptoms I had been discounting, also noticed my only good reaction to meds recently was to Malarone, so put me back on Mepron. It's great.

Donna, the tea party and other activities sound fun. I wish our choir got together like that. :) Today was exhausting ... it was First Communion .... the second song was three verses, and after that it was just me and the piano .... after playing FOUR more verses, I couldn't play another note, LOL. There was literally no rest anywhere in the piece .... so I let her play the fifth time through (which if you count the three verses with the choir, it was the 8th time through!) on her own. :) Fortunately I was playing pretty well today because I had never even heard the piece we were playing before Mass today. :lol: Yes, I was sight-reading in front of 1500 people! :o:lol:

Paula, that stinks about the ring. Grrr.

Birdy, I hope you're feeling better soon.

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donna-

the tea party does sound fun. I had a lot of trouble falling asleep last night too which is very unusual for me. Usually I pretty much pass out and than have all my sleeping problems in the morning like waking up at two am and not being able to go back to bed. Not very fun. I hope you continue to not herx!!!!!

HOw is the think green bar I always see it and think to try it. Bars are good for me because I am always trying to get extra calories.

Birdie-

I hope you are feeling better

carla-

glad you found the right meds combo. You chould suggest your choir have a tea party.

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Rachel, can you remember how you felt after your DMPS challenge? The nurses said that sometimes people feel kind of bad afterwards so suggested I do it on a Friday so I have a weekend to recover if necessary.

I've never felt bad after DMPS IV's. I sometimes feel better for a period of time....I actually look forward to my treatments. :) On the contrary I HATED my mineral IV's and sometimes I felt worse after those.

It might be that the DMPS was moving copper out.....and then the mineral IV's were putting it back in. <_<

I wasnt mobilizing alot of mercury....it was mostly copper coming out in all of my tests. I dont know how the treatments will make me feel once I get the copper out of the way.

Dr. S. told me to schedule my first treatment on Friday....so I could recover over the weekend. After that my treatments were always scheduled for Friday's because I just kept them exactly 2 weeks apart. Now that I started again (on a Tuesday)....I guess all my treatments will be on Tuesdays. :rolleyes:

They will spray a small amount on your tongue to make sure you dont have a negative reaction. You'll have to wait 10-15 minutes after that...and then you'll get the IV.

Everyone's different and some people cannot handle it at all...my own experience has been very positive though.

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Yes, I was sight-reading in front of 1500 people! :o:lol:

Wow, BRAVE soul! :lol: Course, at least you can sight read!!! :P My good friend Becky had to do that today too because she practiced the wrong song. :lol: :lol: She has to play keyboard for the first service.

the tea party does sound fun. I had a lot of trouble falling asleep last night too which is very unusual for me. Usually I pretty much pass out and than have all my sleeping problems in the morning like waking up at two am and not being able to go back to bed. Not very fun. I hope you continue to not herx!!!!!

HOw is the think green bar I always see it and think to try it. Bars are good for me because I am always trying to get extra calories.

Yeah, your sleep pattern sounds almost exactly like mine, but I start waking up at 1:00. I probably go to bed a little earlier than you do though. :P

The Think Thin bars are pretty good. They've got lots of good ingredients even spirulina I think (hence the green in the name, lol). They are gluten and dairy free, but I think they are produced in a factory that produces gluten items. Still, if you're eating what you've been eating, I think that would be okay. :lol: I put cashew butter on them. Yummm.

I've never felt bad after DMPS IV's. I sometimes feel better for a period of time....I actually look forward to my treatments. :) On the contrary I HATED my mineral IV's and sometimes I felt worse after those.

...

They will spray a small amount on your tongue to make sure you dont have a negative reaction. You'll have to wait 10-15 minutes after that...and then you'll get the IV.

Everyone's different and some people cannot handle it at all...my own experience has been very positive though.

Yeah, I was pretty sure that the DMPS was good for you, but the minerals weren't, but I couldn't remember for sure. I'm thinking I'm going to feel fine...I'm trying to decide if I want to make an appointment to get new tires on Saturday. :lol:

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carla-

glad you found the right meds combo. You chould suggest your choir have a tea party.

I used to be an organizer .... but I'm not back to that point yet. :)

Wow, BRAVE soul! :lol: Course, at least you can sight read!!! :P

:lol: I've gotten quite good at it because I usually don't practice. :ph34r: I make plenty of mistakes, but I've gotten quite good at hiding them.

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