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Rachel--24

Omg...i Might Be On To Something

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The holisic doc I saw on Friday ordered a bunch of test work. Now I'm wondering if I should really get it done or if I should hold off since the appt with the llmd is so soon. I'm pretty sure the llmd is going to be ordering some testing as well (probably more specific too).

Also just sat down and figured out my daily caloric intake for the last few weeks since the pain started. It's been around 1000 a day or lower. No wonder I've been losing weight! I'm down to 161 now.

I look good, but would rather be eating again.

I'd wait until after you see the LLMD. You still may benefit from some of the tests though.

You don't want to starve yourself if you can eat. Maybe you could try a more soft/liquid diet. Losing weight too fast can also be harmful.......unless there is no way to prevent it (like food not settling well with you).

Within a minute or so of removing the bandaid, the darned thing started to itch! It's been driving me crazy with the itchiness for about an hour and a half now! There is absolutely NO redness at all, and I can barely see the spot where the shot was...not bruised, not raised, nothing. What the heck could cause the itching and why only AFTER I removed the bandaid and with no redness? Weird, strange, typical. :lol:

Could it be the adhesive to the bandaid?

Birdy,

It is important and I wouldn't feel bad calling the nurse at home. She gave you her number after all.

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I'd wait until after you see the LLMD. You still may benefit from some of the tests though.

You don't want to starve yourself if you can eat. Maybe you could try a more soft/liquid diet. Losing weight too fast can also be harmful.......unless there is no way to prevent it (like food not settling well with you).

She ordered ferritin and D, which haven't been tested since July. She also ordered DHEAs and Total and Free Testosterone, since my old doc kinda "forgot" those when he ordered the other hormone testing in October. She's re-doing the LH and FSH, along with serum cortisol. And she decided to test my B12.

Kinda miffed about that last one. When I asked the other doc about getting my Bs tested, he gave me this runaround about already being on supplements and said I had to do "this" test. $204 out of my pocket later, I still don't know what my levels are, other than they're low. You're right. Think I'll wait on these and see what the llmd has to say.

I can hardly eat at all without the enzymes. Even with the enzymes, I'm afraid to eat because of the pain. My body seems to be craving sour now. The hot lemon water is tasting really good and I want sauerkraut, of all things! :huh: Think you're right (again!) and will break out the blender. Have to hit the health food store tomorrow anyway to replenish my supplement supply. Will pick up some smoothie additives. Told my family I want a juicer for xmas. Hope they were listening. :)

Nyxie,

I don't know how I missed congratulating you on your appointment! That's fantastic!!! :D :D

Thank you! :)

Within a minute or so of removing the bandaid, the darned thing started to itch! It's been driving me crazy with the itchiness for about an hour and a half now! There is absolutely NO redness at all, and I can barely see the spot where the shot was...not bruised, not raised, nothing. What the heck could cause the itching and why only AFTER I removed the bandaid and with no redness? Weird, strange, typical. :lol:

Maybe put the bandaid back on? :huh:

Yeah, most "conventional" thinking doctors run the elisa test...they only run the western blots (and usually NOT from Igenix) if the elisa comes back positive...even then sometimes they won't! :angry:

I don't know, some of the holistic stuff might be worth it. They actually probably use better labs (although not necessarily a given) than more conventional doctors would.

For the most part (except the above-mentioned test) I've been pretty happy with the testing the holistic docs have done. Of course, it doesn't help that my old doc was losing it and didn't order complete panels of anything. But the results were good. :)

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Well apparently all I had to do was post about the itching! After over an hour and a half of solid itching, within a couple of minutes of posting here, the itching went away completely! :lol: Sheesh, had I known that I would have posted about it sooner. :lol: From now on you guys are hearing ALL my petty little grievances! :lol: :lol:

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*channeling my inner cynic* Yeah, that makes sense.

Yeah, I restrained myself, too.

The hot lemon water is tasting really good and I want sauerkraut, of all things! :huh:
Well, lemon water is alkalinizing and sauerkraut has lots of good stuff (enzymes), so you're probably craving them for a reason. I wish I liked sauerkraut .... it's supposed to be good for you.

Well apparently all I had to do was post about the itching! After over an hour and a half of solid itching, within a couple of minutes of posting here, the itching went away completely! :lol: Sheesh, had I known that I would have posted about it sooner. :lol: From now on you guys are hearing ALL my petty little grievances! :lol: :lol:
Okay, I will, too.

Today I've had a stomach ache for most of the day. Some D, too, but not of the urgent/frequent kind. Mucousy stool. So, what's causing this???? Pain in the left side. Gassy. Maybe the Rifampin? Could finishing the Humaworm contribute? The only thing that has changed are those two things.

I have been nauseous off and on with the Rifampin. Oh, just remembered, I also ran out of Prilosec ... duh, that really could be it .... sending Morgan to the store now. :)

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I had my last iron IV today and it went well, other than feeling really weak because I haven't been able to eat. We put in a call to the LLMD's office to see what they suggest we do so I can actually eat. All I have been able to get down today is some green smoothie and a little bit of fudge.

Meanwhile my mom is angry at me (again...of course) because apparently I didn't tell her that I wasn't feeling well. I told her that if I told her every time, she'd be REALLY sick of me...lol. She is now hiding away from me.

I am just really not doing well lately...I'm so sad about all of this. Every effort I make is a failed attempt. I can't start to take anything the LLMD gave me because I need to do the stool test first and since I am not eating much, I can't seem to go to the bathroom. Sorry for the vent...just had to get it out.

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And... I'm not allowed to call tonight. :angry: (And she didn't pick up the phone when I did call :ph34r:.)

Sorry, but...... :lol::lol::lol:

Told my family I want a juicer for xmas. Hope they were listening. :)

I hope they were too. :)

Hope the smoothie addin's work. Hard to keep what little energy you have if you can't eat.

:lol: From now on you guys are hearing ALL my petty little grievances! :lol: :lol:

:lol::lol:

Glad that episode is over!

I have been nauseous off and on with the Rifampin. Oh, just remembered, I also ran out of Prilosec ... duh, that really could be it .... sending Morgan to the store now. :)

Hope the prilosec is the answer. Say HI to Morgan! :D

I am just really not doing well lately...I'm so sad about all of this. Every effort I make is a failed attempt. I can't start to take anything the LLMD gave me because I need to do the stool test first and since I am not eating much, I can't seem to go to the bathroom. Sorry for the vent...just had to get it out.

That makes things real tough. :(

Sorry about your mom......double hard if you both are dealing with lyme. :(

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I have been taking humaworm I haven't noticed much I think it has started causing some bad bloating the past few days but it it hard to tell because i often experience bad bloating. I am gonna try to just stick it out though its been like 2 weeks so far.

Yesturday I had chelation and I did a provoked test so I will get to see whats going on with the metals. My doctor and i have decided its time to address the lyme issues. He wants me to try levaquin on half the nornal dose. I am alittle hesitant though. HEaring how much it helped Carla is a little inspiring though.

Miamia

Mia, good to hear from you and it sounds like you are making progress, that is great. Be sure you have your binders like charcoal or whatever when you start the levaquin.

I'm happy to hear that your flare/herx is over. Do you think the massage thing you did was just too much?

Yes, I think it stirred things up. She had used more strength that time. My lower back was tender but actually felt better after she was working on it. I think it stirred up either lyme and/or mercury. Given that I improved after starting the abx again, I think it was lyme.

When I go back at the end of the month, I'll go again and ask her to keep it more gentle in that area. Also I won't go that often (I did two days in a row last time). I'll do the gua sha scraping again too, and see what happens.

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I have been nauseous off and on with the Rifampin. Oh, just remembered, I also ran out of Prilosec ... duh, that really could be it .... sending Morgan to the store now. :)

Carla, I just read yesterday in Buhner's book that the acid blocker inhibit samento from working. It works better to take it with a glass of water with a teaspoon of lemon or apple cider vinegar, the books says.

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Nyoxie, great news about the appointment. I think if it were me I'd wait until the LLMD appointment, then proceed with the testing after that. You'll want to coordinate the treatments anyway, why not the testing when the wait isn't very long?

Kassandra, you sound a bit depressed, hang in there. You have really come a long way. I don't know what to suggest to help with elimination as you are pretty sensitive, and your current tolerance is for food that is low in bulk. The flax seed would help if you can add it to your smoothies.

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Carla, I just read yesterday in Buhner's book that the acid blocker inhibit samento from working. It works better to take it with a glass of water with a teaspoon of lemon or apple cider vinegar, the books says.

At this point, the Rifampin is going to have to take precedence over the Samento. Thank you for the information. I had been taking Prilosec for a while, and have had nausea lately, and now stomach pains .... I think I need to see if it takes this away. If not, then I know it's the Rifampin causing the trouble.

I ran out of Prilosec, then when I was stopping Levaquin anyway, I just didn't buy more. The Prilosec helps the Levaquin to work better according to Dr. B.

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I am doing a little bit better now. I got the stool test done and I think that was weighing heavily on my mind...lol! It was possibly the grossest thing I have *EVER* had to do...lol. I'm sure you all can empathize! Yuckkk...good riddance! I will go tomorrow and do the LabCorp...does anyone think I should wait until after the blood test to start things...or can I start them tonite? I really am anxious to start something!

Kassandra

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Okay, so took my first AmbienCR last night. I was a little scared to take it for the first time on a work night (since I didn't know how it would affect me), but really felt like last night was a good candidate for it. I normally go to bed at 9:00, but had a rehearsal from 7:15 to 8:00 and got home about 8:25, so decided to take it about 8:40 and just go to bed. I still woke up lots throughout the night, and even once got up to go to the restroom, but fell back asleep each time until about 3:15. Was pretty much wide awake at that point, lol. So, now I know that it doesn't stay in my system more than about 7 hours. I plan to take one tonight as well since I'll be out late for our performance. I took tomorrow off of work so really don't NEED to take it, but still plan to take one just so I can see what happens two nights in a row. I didn't see any signs of sleep-walking, sleep-eating, sleep-driving, or any of the other things it warns of, lol. Course not sure I would since I live alone...but I guess not having the cops at my door in the morning was a good sign. :P:lol:

Oh, and woke up with that stupid itchy shot site, lol. Phew, posted and now it's gone again! :lol:

I have been nauseous off and on with the Rifampin. Oh, just remembered, I also ran out of Prilosec ... duh, that really could be it .... sending Morgan to the store now. :)

I hope that was the answer!

Rachel, Donna, so cool that you met! Yes, I think hugs are in order! I am quick to hug when I feel connected, but pretty shy when I am not.

Yeah, I'm not a huge hugger, and I DID remember that Rachel said she is kind of shy, but I just couldn't help myself in this case, lol!

I am doing a little bit better now. I got the stool test done and I think that was weighing heavily on my mind...lol! It was possibly the grossest thing I have *EVER* had to do...lol. I'm sure you all can empathize! Yuckkk...good riddance! I will go tomorrow and do the LabCorp...does anyone think I should wait until after the blood test to start things...or can I start them tonite? I really am anxious to start something!

I'm SOOO glad the stool test is done. I absolutely hate those (and I've had to do about 5 or 6 of them, lol), because I can have D for years and as soon as I have to do a stool test I can't go. :P

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Okay, so took my first AmbienCR last night...... So, now I know that it doesn't stay in my system more than about 7 hours. I plan to take one tonight as well since I'll be out late for our performance. I took tomorrow off of work so really don't NEED to take it, but still plan to take one just so I can see what happens two nights in a row.

Sounds promising. If you can sleep that long it sound slike more than you were sleeping.

Stool testing.......sounds like par for the course.

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I started some Probiotics last night to see if it may help my stomach and since I just woke I up, I don't know if I'll be nauseous today with food or not. But, the good news is that I also took some Olive Leaf Extract and that didn't bother me at all! :D

The probiotics are the ones that say they have soy and dairy in them...but I didn't feel that in any way, so it must be just traces of it because I am really sensitive usually.

My mom took 1 Olive Leaf a few days ago and she definitely had a reaction...it made her really sleepy and just feel not well...I took 2 and no reaction...yay!

My mom wants me to wait until she is home for me to start taking the abx in case I have a reaction, since my bro is useless...lol. :rolleyes:

I am going today to have the LabCorp test done and then hopefully I will be able to start the abx tomorrow.

Donna,

That's so funny about the stool test and not having D when you have to do it...I had the same experience! LOL!!!! :P

Kassandra

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Kassandra,

Yay for not feeling utterly horrible when you woke up! :P (Or at least I assume so...)

Everyone,

We just got ahold of the nurse at the LLMD, and she said that it was fine for me to take the Flovent for now. Also, the bloodwork from Fry Labs came back negative for all Lyme coinfections. :blink: My other bloodwork (from Lab Corp) hasn't come back yet.

This is kind of confusing, and discouraging. Because if I don't have Lyme, what's wrong? :( Heavy metals could explain some, but not the on-and-off symptoms, and the baker's cysts (now I'm really worried about the RA panel), and the wild allergies (I reacted to the goat's milk with nausea, never a symptom of dairy before I went off). Also, I woke up with a very mild fever this morning, and my shoulders were very sore. The ortho-bionomist was able to help that a lot, though.

Not quite sure what to do here. :(

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We just got ahold of the nurse at the LLMD, and she said that it was fine for me to take the Flovent for now. Also, the bloodwork from Fry Labs came back negative for all Lyme coinfections. :blink: My other bloodwork (from Lab Corp) hasn't come back yet.

If it wasn't Igenex it's not very reliable. Also, lyme is largely a clinical diagnosis. If they don't use Igenex and your mother is willing, I'd contact Igenex for the paperwork and get the blood draw done for the Western Blots.....needs an MD to sign.

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We just got ahold of the nurse at the LLMD, and she said that it was fine for me to take the Flovent for now. Also, the bloodwork from Fry Labs came back negative for all Lyme coinfections. :blink: My other bloodwork (from Lab Corp) hasn't come back yet.

This is kind of confusing, and discouraging. Because if I don't have Lyme, what's wrong? :( Heavy metals could explain some, but not the on-and-off symptoms, and the baker's cysts (now I'm really worried about the RA panel), and the wild allergies (I reacted to the goat's milk with nausea, never a symptom of dairy before I went off). Also, I woke up with a very mild fever this morning, and my shoulders were very sore. The ortho-bionomist was able to help that a lot, though.

I'm sorry! It is confusing and discouraging. Did you get a copy of the Fry labs? I'd get a copy if you don't. Not that I distrust labs or doctors or peope who intrepret the labs, lol, but I'd just be interested to see what bands they tested for and how it looked. So the Fry labs was just co-infections right? Did they test for Borrelia (did I spell that right--it looks wrong, lol). While usually co-infections go hand in hand with lyme, I also thought (maybe wrongly) they are harder to test for and don't always show up in testing.

Yeah, something is causing all your wild symptoms...I'm sorry this is so hard for you!

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It was possibly the grossest thing I have *EVER* had to do...lol. I'm sure you all can empathize!
Yes, I spilled one of the vials and had to scoop it up off the bathroom floor ... as if the testing wasn't already gross enough.

Okay, so took my first AmbienCR last night. I still woke up lots throughout the night, and even once got up to go to the restroom, but fell back asleep each time
This is how it works for me. Generally, I wake up once though and go to the bathroom .... that's when I take the other half of the regular Ambien.

It sounds like it's working for you. It's good to get some sleep isn't it?

Also, the bloodwork from Fry Labs came back negative for all Lyme coinfections.

All my coinfection testing has always come back negative. They only test for a couple strains of each coinfection, and there are lots more than just a couple. It's obvious I have babesia and bartonella but both tests came back negative.

Fry is a specialty tick borne disease testing lab.
Yep, it's a good one. :) I think it's generally used for coinfections and IGeneX for the Western Blot, but I'm not sure.

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I stand corrected. My main point which I didn't state was that it didn't look like the WB's had been tested for. Have they been tested before Birdy?

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To my knowledge, there isn't one "best" for really any of them. A negative test result doesn't rule something out, as we all know. There are some better than the standard run of the mill labs, but after that, each of them have some good/some not as good.

Andreas right----definitely need the WB run by a specialty lab. MDL is often taken by insurance, FYI.

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