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Rachel--24

Omg...i Might Be On To Something

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I'm anticipating the call from my Dr. on my IgeneX test any day now, and praying it's accurate so I can deal with it or move on.

Are you going to post your results for us to see? We've been keeping track of people's results on the Western Blots. I think Donna has the list that breaks IgG and IgM down. I combined them and took the highest value.

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Birdy, that sounds like a great appt!! Very thorough.

It's fine to tell all about the appt., like Andrea said, we just don't tell all about the meds. I also don't post much at all about my daughter's treatment. On the one hand, we like to keep it public so it helps, on the other, we protect our doctors by not getting their names out there along with what they're prescribing.

I'm quite a bit more free with protocol information on Lymenet where my name is more anonymous, but I still keep my doctor's name private.

Your doctor should be willing to prescribe meds based on your test results, so you most likely won't have to wait for your next appt. for treatment ... if you get positive results on any of them. Ethically, they have to promptly treat in the face of a positive test result ... that is why they won't test you unless they see you first.

TS, looking forward to hearing your results!!!!

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Andrea,

Thank you for you explanation! I'm going to be waiting 3 months before I get any more treatment, but I'm going to be getting the blood drawn for the first two sets of labs tomorrow, and should get the results back in about a week. The first set will have a copy set to my house, and the second set the Dr. will forward on to me. The nurse also gave me her home number (office doesn't have an answering machine, apparently) to call if I have any questions. Another neat thing: her daughter is named after my allergist. :-)

TS,

Thank you for the well wishes! I am very happy with this Dr. :-) I pray, as well, that your test results are accurate and that you find a good Dr if you don't have one already.

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For anyonme who used Igenex,

How long did it take you to get your results back from them? They were shipped on Monday.

About 2 weeks. I haven't had the test done but that is what everyone else had for waiting time. Maybe a little longer to go across the country, but you're in CA so it should be no longer than 2 weeks.

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Welcome Birdie and Zook! Glad you joined us.

Trying to think of a funny maladaptive milieu quip but my maladaptive milieu fog has taken over today...

Kassandra, that ER experience takes the cake! I agree that this should all be promptly reported to the hematologist. Probably the hema guy should have called ahead that you were coming.

Mia, glad you checked in, sorry you are struggling still.

Lisa, good to see you, and the weight gain is good news.

TS, Kassandra, Birdie (did I miss one?), looking forward to hearing your lyme test results. I'm one of those here with the longest diagnosis of lyme (7 years). Also have mercury issues. Celiac is a the newest piece of the puzzle for me.

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Donna glad you're back and had a good time.

Carla, (and someone else mentioned it, was it you, Julie?) how do you do your epsom salt baths? You said you feel better after...I seem to continue to have more symptoms after the detox baths. Do you know if this can activate the lyme?

I may have had a virus this last week that made this whole picture harder to figure out. But after three days off my antifungal and ABX, I was hit hard with symptoms less than 2 hours after restarting the ABX (flagyl), and it just got worse as the day went on. Fatigue and pain, especially in the upper back, shoulders and neck. Had a rough night too.

Does this sound like a herx or activation of the lyme or mercury getting stirred up? It is somewhat typical for me but this time is really strong. I have been trying to take my charcoal in the middle of the night to try to help bind toxins getting released. Can't tell if it helps.

I am not getting any work done, and am due off on my next trip next Tuesday.

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Re the synthroid, I don't know either. For some thyroid issues, it is much better to use Armour thyroid than the synthetic. I wonder if you could switch?

It's pretty hard to avoid corn, harder than a lot of things if you use anything prepared. I am trying to be corn lite.

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Sherry, I get that neck, shoulder, back pain, too.

I started Tindamax during my herxes, so for one week, then off for two and a half weeks. It really seemed to make things worse and it's making it much harder to pull out of this herx. Yesterday was my first day off it and today I'm starting to feel better from my last herx.

I think these cyst-busters activate more of the Lyme, at least it FEELS that way!!!

For the baths, I put two cups of Epsom Salt in a hot bath. I didn't time it, but I was sweating by the time I was done. I cooled the water down before I stood up, then rinsed off. It makes me tired, probably due to the heat and magnesium, but it takes away much of the pain.

I don't know if it can activate the Lyme, but maybe the heat is doing something. When I first started taking saunas the heat would make me feel bad. Heat is detoxifying, so it could be stirring up something that you aren't eliminating immediately .... but that's just a guess.

Well, I'm off to a busy day today. I had the pleasure of talking with Kassandra for a couple hours last night ... it's a good thing we don't all do conference calls ... it's even more fun chatting over the phone. :) She got to witness my Lyme brain in a way you guys don't .... here I have the advantage of being able to read what I just said so I don't keep forgetting! :lol:

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Sherry, I get that neck, shoulder, back pain, too.

I started Tindamax during my herxes, so for one week, then off for two and a half weeks. It really seemed to make things worse and it's making it much harder to pull out of this herx. Yesterday was my first day off it and today I'm starting to feel better from my last herx.

I think these cyst-busters activate more of the Lyme, at least it FEELS that way!!!

For the baths, I put two cups of Epsom Salt in a hot bath. I didn't time it, but I was sweating by the time I was done. I cooled the water down before I stood up, then rinsed off. It makes me tired, probably due to the heat and magnesium, but it takes away much of the pain.

I don't know if it can activate the Lyme, but maybe the heat is doing something. When I first started taking saunas the heat would make me feel bad. Heat is detoxifying, so it could be stirring up something that you aren't eliminating immediately .... but that's just a guess.

Do you get the neck shoulder back pain during the herx?

I agree about the cyst busters activating the lyme--seems like it has been like that for all the years I have taken flagyl.

I think maybe what you are saying is right...and I am just not eliminating well. Maybe until I get more gut healing I won't make much progress.

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Hey rachel if you are going to cheat with sweets why don't you try ice cream again?

I feel like death.

Hi Lisa! For some reason this combo of phrases cracked me up, lol. :lol:

They sure do fit alot into those rooms!

Yes, and did you notice the picture of the shelves under the TV...those are HALF of my supplements...I only took half, lol. All that food is mine too, lol. :lol:

In the end I'm getting these tests done through Labcorp (one of the two labs covered by our crummy insurance :angry: ):

...

At this point I'm very happy with everything, except for the long wait, of course. I want to get better, and get better now! :P

(PS: I'm not sure if I'm posting too much info about my treatment or not.... :unsure: )

You did fine with the info...not too much. As a couple of others have said, we just try to protect our doctors, so we don't name them and we don't say exactly what they've got us on.

You could do worse than Labcorp, so don't feel bad about that part. I LOVE all the tests your doctor is running. Sounds like it's well covered. My doc tested me for BUNCHES of stuff too, but not as much as you, lol. I also had the Spectracell testing.

The waiting is definitely tough. I finally see my doctor next month...we haven't begun hard treatment yet and I'm very anxious to do SOMETHING. I've been seeing him since April and so far we've just been working on getting my body in a state where it can take the treatments, lol. I think I'm almost there, so I'm excited.

I'm anticipating the call from my Dr. on my IgeneX test any day now, and praying it's accurate so I can deal with it or move on.

I have severe concentration, memory problems and it also affects how I speak,write, and hear. This is why I can't read more than a couple short posts at a time and would never be able to respond to people as some people do here. Some day I hope my mind will be able to retain information and multi-task again.

Hoping you get some answers from your test.

I feel the same way as you do about reading the posts...that's why I sort of disappear once in a while. It used to be really bad, but it's getting better for me even though I'm not on formal treatment yet.

Are you going to post your results for us to see? We've been keeping track of people's results on the Western Blots. I think Donna has the list that breaks IgG and IgM down. I combined them and took the highest value.

Yes, everyone, definitely post your results here (if you want) and I'll add you to the list (and email it to you if you want--it doesn't post well here). I've got most of us who post here on a spreadsheet so you can see at a glance everyone's Igenix results together.

The nurse also gave me her home number (office doesn't have an answering machine, apparently) to call if I have any questions.

Wow! Fantastic...that's almost unheard of. One of my doctors recently did that and I almost fell over, lol. I had some prolotherapy injections in my neck, back and shoulders for pain, and on the first treatment, and because my first session was on a Friday, my doctor gave me her cell phone number in case I had problems.

For anyonme who used Igenex,

How long did it take you to get your results back from them? They were shipped on Monday.

Yes, I think it was two weeks. It will go to your doctor I believe.

Donna glad you're back and had a good time.

Carla, (and someone else mentioned it, was it you, Julie?) how do you do your epsom salt baths? You said you feel better after...I seem to continue to have more symptoms after the detox baths. Do you know if this can activate the lyme?

I may have had a virus this last week that made this whole picture harder to figure out. But after three days off my antifungal and ABX, I was hit hard with symptoms less than 2 hours after restarting the ABX (flagyl), and it just got worse as the day went on. Fatigue and pain, especially in the upper back, shoulders and neck. Had a rough night too.

Does this sound like a herx or activation of the lyme or mercury getting stirred up? It is somewhat typical for me but this time is really strong. I have been trying to take my charcoal in the middle of the night to try to help bind toxins getting released. Can't tell if it helps.

I do much less epsom salt than Carla does. I WAS putting that much, but found that I could only stay in the bath for 5 to 10 minutes or I'd feel horrible when I got out...very dizzy, weak, lightheaded and shakey. So I cut back the amount to a cup or less and can stay in the bath longer, even in a really hot bath.

Sherry, I get that neck, shoulder, back pain, too.

Yep me too. Mine doesn't EVER go away though. :(

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The waiting is definitely tough. I finally see my doctor next month...we haven't begun hard treatment yet and I'm very anxious to do SOMETHING. I've been seeing him since April and so far we've just been working on getting my body in a state where it can take the treatments, lol. I think I'm almost there, so I'm excited.

Can't wait for your appointment and the next progression in treatment.

I don't remember if I saw the supplements or not. I probably did but just didn't know what it was. Those ships must be huge!

I'm sorry you have so much shoulder/neck/back pain. :( I didn't realize it was that bad.

On another note, I have the phone consult set up for next week with Dr. E. She want to talk to me about the supplements and try to switch Talitha over to chlorella.

I don't know if she's going to have me come up for a brief muslce testing or what. I just noticed going over the ASRYA stuff with Dr. M yesterday at Seth's appointment that chlorella was part of T's drop treatment. The frequency of it anyway. So, maybe she'll be ok with it now. She didn't test well for it to begin with. Dr E wants to try and move her to chlorella to save on having to get three different toxin binders to only getting two.

Mitch and I haven't gone off of them yet, but we may have to.

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Those ships must be huge!

They are, lol. This one held about 2,800 passengers and about 1,000 crew...so yeah, like a small city. It has just about everything a city does: a medical center, library, coffee bar, brig, fitness center, spa/salon (where you can even get your hair done if you want), movie/show theater, nightclubs and lounges, three restaurants, a buffet and three dining rooms. There's also a pizza place, hot dog/hamburger place, an ice cream parlor an internet room, a wireless place and an art gallery. Some ships are a bit smaller but there are even ships that are larger!

I'm sorry you have so much shoulder/neck/back pain. :( I didn't realize it was that bad.

Yeah, it's always bad, which is why I don't talk about it much...kind of no point, lol. Sometimes it's worse than others, but the pain never goes away entirely. Even on my best day the pain level is at least a 2 on a scale of 10, which because I'm so used to it is barely noticable I guess, lol. In the last two weeks the neck pain has gone back up to a 5 and when I hurt my back a few weeks ago it was at least a 7.

On another note, I have the phone consult set up for next week with Dr. E. She want to talk to me about the supplements and try to switch Talitha over to chlorella.

I don't know if she's going to have me come up for a brief muslce testing or what. I just noticed going over the ASRYA stuff with Dr. M yesterday at Seth's appointment that chlorella was part of T's drop treatment. The frequency of it anyway. So, maybe she'll be ok with it now. She didn't test well for it to begin with. Dr E wants to try and move her to chlorella to save on having to get three different toxin binders to only getting two.

Mitch and I haven't gone off of them yet, but we may have to.

It'd be great if she could muscle test you and it would be greater still if you could cut down on the number of binders. I had to switch my brand of chlorella, and so far I think this is doing okay. These are pills instead of the liquid I was taking which was hugely expensive and difficult to get. I'm wondering if the one you're on (drops, right?) is the same as the one I was on. It was Prime Chlorella in a dropper bottle and it was $25 for a small bottle, which only lasted a week. I got it from Anna, and since she and Dr. E know each other, I'm wondering if it's the same.

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It'd be great if she could muscle test you and it would be greater still if you could cut down on the number of binders. I had to switch my brand of chlorella, and so far I think this is doing okay. These are pills instead of the liquid I was taking which was hugely expensive and difficult to get. I'm wondering if the one you're on (drops, right?) is the same as the one I was on. It was Prime Chlorella in a dropper bottle and it was $25 for a small bottle, which only lasted a week. I got it from Anna, and since she and Dr. E know each other, I'm wondering if it's the same.

We are on King Chlorella with Russian Immune Support. The brand is Allergy Research.

You can buy the same thing online by Nutricology from Holistic Physician. I think it's holisticphysician.com. When we ordered from them this summer it was $22.75 for those and I think $35 for the Allergy Research.

They are chewable (don't taste good that way though. :P ) and come 600 per bottle. They have the normal dosage at 10 pills but I forget whether that is once or twice a day. Must be 2. Mitch takes 17 a day and I take 15, Seth is on 4.

Is your back better now? Do you think that's still causing some increased pain?

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Is your back better now? Do you think that's still causing some increased pain?

It's better, but not gone. The pain is now on the right side (I injured the left side). I DO think it's still causing the increased pain.

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This is interesting: There are "fungus" camps out there that claim that 100 percent of American corn is infested with the Aspergillus Fungus. Aspergillus produces Aflotoxins which are a known risk factor for liver cancer. There are people who wouldn't touch corn with a ten foot pole on account of this. The same sources claim that this percentage is reduced to 80 percent in the rest of the world.

The other interesting thing is that we put corn in absolutely everything now. You will be hard-pressed to read a label on processed foods that doesn't contain corn in some form. Corn syrup is just one example of this.

In the book "The Omnivore's Dilemma", the author talks about how almost every food in the middle aisles of the grocery store is little more than corn in some manifestation.

Corn has been genetically altered by we westerners over the years from a wild grain that grew high in the Andes to the grossly distorted "kernels" that we now grow to almost the exclusion of every other crop in the giant midwest Agra-corps. It's cheap, it's sweet, it seems to store well (except for the fungus) making it an easy export and so we became very invested in it.

I personally try to avoid it when at all possible though I have never noticed any particular sensitivity to it.

Best of luck to you.

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Do you get the neck shoulder back pain during the herx?

At this point, yes, but before I was like Donna, it was pretty constant. I didn't realize I was in so much pain until it went away.

I agree about the cyst busters activating the lyme--seems like it has been like that for all the years I have taken flagyl.

It kind of took my by surprise ... I figured out a couple days ago that it was the Tini making me feel so much worse than I had been ... of course, with my Lyme brain I kept forgetting that and finally remembed last night talking to Kassandra. Fortunately, she can identify with the Lyme brain .... sometimes it's embarassing talking to someone who doesn't understand it ... ends up that I avoid the phone mostly except for my Lymie friends and my family, it's easier to hide when in person.

I think maybe what you are saying is right...and I am just not eliminating well. Maybe until I get more gut healing I won't make much progress.

It may not be that you're not eliminating well, it may be that you are producing more toxins that you are able to eliminate .... keep detoxing!! :)

I've been seeing him since April and so far we've just been working on getting my body in a state where it can take the treatments, lol. I think I'm almost there, so I'm excited.

Finally!!! I'm so excited!!! :D

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Is there any evidence of the body being able to heal itself and/or fight off bacteria/parasites without the use of drugs and or herbs?

I have had a relatively good day and a half. Less pain, less regurgitation, but much more gas and bloating (still pain when I eat).

If I keep on keepin on, is there a chance with good nutrition/sleep/hydration my body can fix whatever no doctor can figure out what's wrong?

Does that make any sense?

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I got behind on posts. :huh:

I kept trying to post the past couple days but was sidetracked pretty easily and never completed anything.

Ummmm yeah......too many sweets. :rolleyes:

I'm thinking my major improvements as far as having fun, tons of energy, laughing and socializing more..etc probably had alot to do with ditching the ice cream. Imagine that! :P

Eating dairy seems to put me in another world...I think I get autistic on dairy. :unsure:

I guess I didnt realize how badly my brain was messed up until it cleared up. Its not just dairy doing it...but the mold also (Probably other stuff too...possibly soy).

In the past when I went off dairy I was still eating alot of moldy foods so never really saw dramatic improvement like what I've experienced recently.

Anyways...I was pretty challenged as far as brain functioning the past few days. OMG...scary stuff!! :blink:

Well apparantly not scary enough to make me stop eating banana bread and cookies. I also had ice cream once. :ph34r:

Its definately not a "sugar" thing because during my two week chocolate binge I never had any brainfog. I can eat sugar without having it affect my brain like this.

It clears up after a day or so but obviously not if I keep shoving this stuff into my mouth. :rolleyes:

I'm better today and I'm gonna continue to be good now. :)

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I think if I can keep my head clear I might actually go back and edit/update post #1 today. :)

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Hello everyone,

I think I spent the entire day on the phone yesterday. LOL! Carla, the second I got off the phone with you, my dad called from NZ. Then my friend called me and we were on the phone until almost 12!!!! :o:)

I agree with Carla, phone conferences would be a disaster to our cell phone bills! LOL! :D They would be fun though.

The Lyme brain is really embarrassing too. I can make things sound better online too! LOL! :lol:

On a relevant note, I made an appt. with a Nutritionist/Dr. who does works with/treats Lyme patients and will help with the nutrition angle of everything. She also does muscle testing which is good. We will also go to an LLMD, but this lasy is a lot closer than Northern Ca, so we will be able to see her probably more frequently. YAY!!!

Kassandra

I have a busy day with phone calls! Wohhoo (sarcastically).

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Welcome to the new comers...Zook, ShadowSwallow and anyone else I may have missed. :)

Is there any evidence of the body being able to heal itself and/or fight off bacteria/parasites without the use of drugs and or herbs?

Kristina,

The body is VERY good at healing itself...this is what its always working at when something isnt right.

My opinion is that if the problems are chronic and things arent improving its usually because its something which the body isnt able to recover from without some help.

I think for most of us at some point we came to realize that the problems werent going away and they werent fixing themselves no matter what we tried. That doesnt mean it *cant* happen but more often than not when things start going wrong there is more than one thing to blame.

I think the body can easily recover from small stressors but when it *cant* recover its probably dealing with too BIG of a stressor and/or too many stressors. In this case some type of treatment would be necessary.

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I agree with Carla, phone conferences would be a disaster to our cell phone bills! LOL! :D

Yeah...especially with me running my mouth. :P

Heck....you guys think I have alot to say in my posts!! Just wait till you hear me on the phone. :lol:

Andrea can confirm this I'm sure. B)

I had one person tell me that after getting to know me and after being around many mercury toxic people over the years...theres just no doubt. :huh:

She said mercury toxic people tend to go on...and on...and on...and on. So yeah thats me. I think she was saying I talk too much. :lol:

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I think if I can keep my head clear I might actually go back and edit/update post #1 today. :)

Heck....you guys think I have alot to say in my posts!! Just wait till you hear me on the phone. :lol:

...

I had one person tell me that after getting to know me and after being around many mercury toxic people over the years...theres just no doubt. :huh:

:lol: :lol: I guess I'm not THAT mercury toxic then. :P Actually, I CAN go on and on and on, but I have to be pretty darned excited about something, otherwise, the fatigue just gets to me. Actually (again), I think it may just be related to typing...in person, I think I can go on and on and on without too much difficulty. :ph34r:

I think for most of us at some point we came to realize that the problems werent going away and they werent fixing themselves no matter what we tried. That doesnt mean it *cant* happen but more often than not when things start going wrong there is more than one thing to blame.

I think the body can easily recover from small stressors but when it *cant* recover its probably dealing with too BIG of a stressor and/or too many stressors. In this case some type of treatment would be necessary.

Yep! I agree.

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Hey everyone,

You guys crack me up. You are all so chili con corny. Hey I got miraculously HEALED! I guess going to church ALL THE TIME and prayer Helped me to my HEALING. :D haha

just kidding but I know I got your attention.

Hey Lisa...My face looked like this when I started reading your post. :o

I was thinking I need to start praying harder!!

Its good to see that you havent lost your sense of humor!! :D

Hey rachel if you are going to cheat with sweets why don't you try ice cream again?

Ummm...I could do this but then I'd be acting totally out of my mind and rambling on about all kinds of things that I probably shouldnt even be mentioning and getting myself in all sorts of trouble cuz my brain is "barely there" and then having to EXPLAIN that its not really my fault (I just ate bad stuff)...not to mention driving around aimlessly totally forgetting that I actually had a destination in mind when I got in my car. :huh:

So yeah...I'm thinking maybe I shouldnt try ice cream again. :P

I feel like death.

Yeah...my brain feels dead but the rest of me is still functioning and I'm thinking that can be kind of hazardous. :ph34r:

I weigh now 110 pounds.

Yup...ice cream is definately good for this!!! I got up to 110 too. :D

Oh p.s. When I hold the ice cream container in my hand the ice cream gets real cold and turns icy AALLLL the time. IT gets so hard I have to cut it with a knife. CRazy huh?? :wacko:

Well....if theres a power outage or a "brown-out" (check back several hundreds of pages for a definition :) ) you can hold onto all of the refridgerated items and nothing will go bad!! I think you have special powers. :P

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