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Rachel--24

Omg...i Might Be On To Something

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Rachel, I don't know if you're interested in this or not, but IGeneX has a new test .... if you have an equivocal result and had band 30 or 31 show up, they can run this test to see whether that band is from borrelia or not.

Do you know the name of the test? I might be interested. :)

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30-31 kda confirmation test. Original, huh? :D

:lol: I think my Dr has something to do with the names... (I'll have to make fun of his creativity next time I see him! :D He *did* tell me to tell him what's going on with me!)

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Hey everyone.

Wow having a good day today but no sweets for about 4 days now! Okay so I had a little bit of Lake Champlain Organic Chocolate. My face is clearing up. When I start the ice cream I break out a lot again.

Hum foot pads. Can wait to hear your results Rachel, and yours too miamia when you aren't to hesitant to try them. Don't forget to show us a before and after picture okay? :D

I'm willing to try anything nowadays. My mom called and said she is going to order me the Waiora zeolite. I will let you know how it will be working for me when I get it. :)

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Wow having a good day today but no sweets for about 4 days now! Okay so I had a little bit of Lake Champlain Organic Chocolate. My face is clearing up. When I start the ice cream I break out a lot again.

I'm jealous you have made it 4 days with no sweets! I'm SO addicted to sugar it's not even funny! I told myself yesterday that I'd refrain from sweets, but I say this, I just ate some m&m's and hershey kisses. :ph34r: :ph34r:

How do you tell yourself to stay away from a food when you don't react? The Dr told me to only have dairy every 4 days, but I can't. I have no reactions, so why not eat it every day? B)

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Last night i did the foot detox patches and today i feel like i have the flu, im not sure if it is from the patches or not. My son has been sick for 3 days so it could be that, im not sure. My legs felt like they were on fire last night, so about 3 am i got up and took them off. They were not as black as i thought they would be lol.

Today we got good news, the water is now safe. But i refuse to ever drink it again, but at least i can bathe and take long hot detox baths and wash dishes.

paula

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I'm jealous you have made it 4 days with no sweets! I'm SO addicted to sugar it's not even funny! I told myself yesterday that I'd refrain from sweets, but I say this, I just ate some m&m's and hershey kisses. :ph34r: :ph34r:

How do you tell yourself to stay away from a food when you don't react? The Dr told me to only have dairy every 4 days, but I can't. I have no reactions, so why not eat it every day? B)

I don't have reactions either, just a little brain ditsyness. But after not eating dairy or ice cream or chocolate I know how bad I destroyed my gut.

I am ssoooooo sensitive, I can taste everything. Everything. When I do eat ice cream I can't. I think it's because the cream coats the intestines so good that you don't know how much your destroying it untill you give it up.

I also was eating it because it was the only thing that would fill me up. As I am always hungry.

I am taking a supplement called stem enhance and it fights cravings. ;) But remeber I didn't make it 4 days with no sweets because I had some chocolate today.

Don't get any ideas people. :)

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Yep, I think a guy that is willing to go out for water sounds like someone worth checking out--friendship anyway.

I'll probably call him and chat with him (his # was on the back of the paper he gave me). The whole "friendship" thing never really works out that way....not in my experience anyway. So...I'm cool with just talking on the phone. :)

He came back today with more info. about zeolite and the name of a holistic Dr. in my area. Obviously I'm really happy with my Dr.'s and definately have no plans to trade any of them....but I cant really explain much to this guy in the couple minutes that he's in line paying for his groceries. So maybe I'll call him and get into more detail about it.

Sherry....my detox foot pads are from Japan.

Rachel, I don't know if you're interested in this or not, but IGeneX has a new test .... if you have an equivocal result and had band 30 or 31 show up, they can run this test to see whether that band is from borrelia or not.

Cool...it would be an interesting test but unless its inexpensive I probably wouldnt take it anytime soon. It hasnt shown up in ART my last 3 sessions..when it did show up early on it was very weak. My CD57 was good....I also dont have monthly flares or anything else that would indicate its causing problems.

Still...its really nice that this test is available now...a year ago I would have jumped on it. :lol:

I'm sure at some point I'll probably take it. I dont doubt that I've been exposed to Lyme...I would actually be shocked if it wasnt positive! I think its hanging around but just hasnt had the opportunity to cause a problem for me. Maybe my immune system is all over it?? I dunno. :unsure:

I'm willing to try anything nowadays. My mom called and said she is going to order me the Waiora zeolite. I will let you know how it will be working for me when I get it. :)

Cool...I'll be waiting to hear how you're doing with it. :)

How do you tell yourself to stay away from a food when you don't react? The Dr told me to only have dairy every 4 days, but I can't. I have no reactions, so why not eat it every day? B)

Trust me...if theres ANY food that I dont react to...I'll be eating it everyday. :lol:

Seriously though...those foods (dairy, wheat, sugar) will most likely stress your immune system. You're not necessarily gonna *feel* a reaction...but you'll make it harder for your immune system as far as dealing with the bugs, removing toxins, etc. Those foods are stressors and the more stressors that you eliminate the stronger your immune system will be. :)

I am taking a supplement called stem enhance and it fights cravings. ;)

If the stem enhance is from Dr. M....I was taking the same one. I couldnt handle it though...my body doesnt like algae too much. :rolleyes:

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I am taking a supplement called stem enhance and it fights cravings. ;)

Is it helping? A miracle drug for me would be something that made me think sugar was gross! :lol:

Rachel,

Did you get my email update from the NP appt? I am wondering what you think about me testing poorly for mercury. :)

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Dear Everyone,

I am way behind on my reading right now! :unsure: I am only on page 1860. Hopefully, I will get a lot of reading done and be able to reply to you all. These headaches are really problematic. Reading is very difficult when your head feels like it is being bashed in with an ice pick. :blink: Due to the possibility of having Lyme, getting my wisdom teeth out is worrisome. Cavitations can result.

Any of you would not happen to know how to avoid those, would you? I cannot leave these things in! I had a migraine so bad for four days, I thought I was going to have to go to the emergency room! Even worse, it seems there is a jaw infection where that molar was extracted in January. Meanwhile, I saw the doctor for my physical on Thursday. Now I finally have the blood work orders for next week! :)

Unfortunately, my doctor still does not seem to take me all that seriously. Something really needs to show in that blood work to prove her wrong. She was telling me I needed a hobby, because I am obessessed with health. Who is not that is so ill all the time? That woman is so stupid! Being chronically ill dominates everything! People just do not understand.

Another interesting clue came about during the appointment. The urine test was alright, except the PH was too alkaline at 8. Dr. B could not remember what that indicated, though. :rolleyes: So, I have done some poking around. That Prilosec I take is likely to blame, but I have not been able to get off of it. Now that I finally found a Naturopath, maybe we can get me off of them. Hydrochloric acid is normally prescribed by them for it.

One of the ladies in Lyme chat knows someone who had this happen. Her sister has Gastroparesis due to the stomach being too base. Now we could be getting somewhere! However, I am not going back on Lyme chat again. :( I was brutally verbally attacked, and sense some of the members are energy vampires who start arguments. I deal with that enough with my family, and go online to escape that. I thought I had found people who understood and were true friends.

None of you have ever treated me this way. I know you never would. No one here blames me for my illness, or the troubles with family and doctors. I was so deeply hurt by what some people said, I am still near tears. All I wanted was for people to understand why I am angry and hurt.

Is that so much to ask? I could not care less about sympathy. I have better things to do than make people feel sorry for me, and I do not consider myself and complainer. If I did not vent sometime, I would completely lose it! I have found my true friends are in Rachelville, all of whom I am truly grateful for. :wub:

Sincerely,

Jin

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You know what I did? I started my mino and Levaquin on the same day as my regular monthly flare .... guess that wasn't too smart, was it? LOL

I'm not in any pain, but I'm dizzy and weak. Very fatigued, but not sleepy.

This is nothing compared to the last time I started Levaquin ... but it makes me feel better to know this is my regular herx on top of the new med herx. Last time I started the Levaquin, I was needing Vicodin and epsom salt baths .... so this is a huge improvement.

Jin, I would get them out.

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Dear Carla,

No wonder you felt so rough! It is a good thing you figured that out. Levaquin seems to be really miserable for everyone. Mia sure had a difficult time with it. I hope to avoid taking it, but probably will have to if I have co-infections.

Those wisdom teeth definitely need to go! They are awful. I have never been in pain like that. At least, not in my head. Nothing even dulled the pain. I am concerned about how to avoid cavitations, though. If I do have Lyme, I do not want to give the bacteria another place to hide.

Sincerely,

Jin

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I can't help with the cavitations issue, hopefully someone else can. Glad to see you posting Jin. So sad about your experience on LN. I haven't gone there mostly due to lack of time and energy, but at the same time those reports also discourage me and I too appreciate this forum.

Carla, I know the herx confirms you need this medication and also glad it is less severe. Every round means you are that closer to remission.

I've been having some minor achiness this week. I'm wondering what is going on and am re-starting the charcoal that Dr. E said to stop for now. I am also worried that I am no longer on any cyst busters, at least I don't think andrographis gets that. Other than that, things have been settling down somewhat for me.

Sherry

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Jin,

It's good to see you. You don't have to catch up if it's too hard for your headache. We understand. Sorry about the nastiness at LN. :(

Did you have the blood draw for Igenex then?

I'd also get the wisdom teeth out. If you have overcrowding, something needs to be done and those headaches won't lesson with leaving them in. You can worry about cavitations down the road if necessary. One step at a time.

Sherry,

Hope things settle back down for you. Maybe you could email Dr E about andro and see if it gets the cyst form.

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Do any of you know whether ceasar salad dressing always has gluten in it? We had some this weekend and no one had any reactions that I can tell. Course the children all had the food LED done and Mitch never has had a problem with gluten even though he's double celiac gene.

We always hesitate when we are invited to any meal due to the food stuff, but right now the only thing I'm really trying to stay away from is wheat gluten. I just bought some cereal with regular oat, barley (or barley malt) and the children are just loving the variety. We've also added back in peanut butter since it's so much less expensive and soy hadn't come up for anyone (except maybe soy sauce.....I forget). We've also just started eating Stoneyfield Organic Ice Cream. I do plan on taking some food samples up to Dr. E when we go up later in the year so we can have things tested. We do have much happier children with only being gluten (wheat, rye, spelt) free though.

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My impression is that dressing ingredients vary. I would bet you got soy in it at least. The wheat is a toss up though. I'm glad you can add some foods back in. You might not see immediate responses, especially if it is celiac. Dr. E said she can't pick up celiac just whether the food stresses the body. Sure hope you can all stay symptom free.

I'll check with Dr. E next time I write her.

Sherry

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You might not see immediate responses, especially if it is celiac. Dr. E said she can't pick up celiac just whether the food stresses the body. Sure hope you can all stay symptom free.

I'm thinking if celiac is a problem that gluten would stress the body, but I could be wrong.

I don't know how M is doing with the ice cream though. He's had tummy aches a couple times and was crying out in his semi sleep and tossing back and forth. Could be the quantity too though. He'd had a big dinner and then we had ice cream after Mitch got home.

EDITED to add.....Micah says his tummy didn't hurt last night, he just couldn't get comfortable.

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Andrea,

I think that most Cesar has soy in it. I googled ingredients and most recipes that came up all have mayonnaise in them, and regular mayo has soybean oil in it. And, in general most dressings have soy in them. I don't know about gluten. I never get Cesar salads because I'm afraid I will get a crouton in there on accident. ;)

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Is it helping? A miracle drug for me would be something that made me think sugar was gross! :lol:

Rachel,

Did you get my email update from the NP appt? I am wondering what you think about me testing poorly for mercury. :)

I'm with rachel anything i don't react to I am eating- but since i react to so many things I guess thats why i ahve to throw alot of rules out the window.

Am I the only one here who suffers from lack of appetite?

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I'm with rachel anything i don't react to I am eating- but since i react to so many things I guess thats why i ahve to throw alot of rules out the window.

Am I the only one here who suffers from lack of appetite?

Nope. I tend to fluctuate between bouts of extreme hunger and not wanting anything but liquids. Right now, I'm hungry but don't want to eat anything. It'll probably be a smoothie and "fudge" day (starting malarone today).

I'm reacting to a lot of things, even those not on my list. Can tell because of almost instant post nasal drip after eating. Probably isn't helping my appetite any.

I've noticed on days when I think I'm eating a lot, I'm not really. Just seems like a lot in comparison to other days. No wonder I'm still losing weight.

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Miamia, I've suffered from a lack of appetite much of the time, then at others have a voracious appetite. It seems that the babesia causes a lack of appetite ... or the Mepron/Malarone does.

I also get stomach pain from Bart .... I certainly don't want to eat when I know it will make my stomach hurt.

Jin, if you're talking about the other night, that must have happened after I left. I couldn't take the generalized doctor bashing, so I cut out early.

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Andrea, how wonderful you guys are able to eat so much more!

About the caesar salad dressing, if it was a classic or traditional dressing that was used it has anchovies in it so I don't know if that could be problematic for you guys.

Hi Jin, was it you that mentioned cavitations? It seems like someone brought something up about cavitations just a little while ago, but can't remember what. Sorry about what happened in lyme chat :(

Rachel, I haven't even had a chance to post about your appt, but it sounded like a good one :) Do you know anything about the neurological stuff your Dr is wanting you to do?? That peaked my interest a little.

Carla and Nyxie, sorry you both are not feeling so great from your herxes :(

My appetite comes and goes too, right now nothing sounds good. In fact everything sounds yuck and the just the thought of eating makes me sick to my stomach.

I should get my allergy test results back mid week next week, I'm a little anxious but a little worried too that it will come back I have problems with everything and what will I eat?!?!

Any insight as to possible reasons I have not gotten my period (other than pregnancy, I'm not pregnant)? I have been regular for years, and this month I am so late, days and days, this just isn't usual for me. I'm a little concerned.

I have been under an enormous amount of stress, but I usually am, it might just be more recently.

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Julie,

Stress can throw things off quite a bit. I was late just after I had started detox stuff so that could be part of it too......on top of the stress.

Sorry about your not thinking anything sounds good. That's tough.

I'll be anxious to hear about your results too, I don't think your allergic to everything though. I'm not good at rotating foods but I have a feeling that you would be. :)

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Last night i did the foot detox patches and today i feel like i have the flu, im not sure if it is from the patches or not. My son has been sick for 3 days so it could be that, im not sure. My legs felt like they were on fire last night, so about 3 am i got up and took them off. They were not as black as i thought they would be lol.

Today we got good news, the water is now safe. But i refuse to ever drink it again, but at least i can bathe and take long hot detox baths and wash dishes.

How are you feeling today Paula?

That's really good news about the water situation, I hope it continues to improve.

The foot detox patches are on my list of things to get too, I've had them bookmarked at Scott's site since you first mentioned them months and months ago Rachel, guess I haven't been in too much of a hurry to get them :lol:

Don't get any ideas people. :)

:lol: Lisa

I totally agree that sometimes you can't tell if you are reacting to something unless you take it away. It wasn't until you stopped eating the ice cream that you could tell how problematic it was for you.

Kassandra, since you are craving sugar so much it could be that you are reacting to it. Sometimes the cravings are strong for what we react to.

I'll probably call him and chat with him (his # was on the back of the paper he gave me).

:D:D:D:D

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:lol: :lol: I agree Rachel! I was going to say you could get herbal tea, but I think even that bothers you! :huh:

yeah....tea would NOT go over very well. :lol:

I think I'll stick to my Penta water. ;)

Thanks for the email. :)

As far as seeing Dr. Amy....I wouldnt suggest replacing your current Dr.'s or anything...but maybe in the future (if its financially reasonable for you) she could help ALOT with letting you know how effective your current treatment is...or if metals are an issue (which ones)...also stuff like parasites and viruses that you might not be aware of.

She has a long waiting list....so its unlikely you'd get in right away....but later on if you change your mind at least you'd be higher up on the list....and then if you feel it isnt necessary you could just remove your name. :)

I tested poorly for mercury as well...I think most people would because its extremely toxic. Everyone's body is different and any exposure to mercury will have some effect on the immune system (in the vast majority of people)....even if its not apparant.

One person may have 2 fillings and end up with debilitating symptoms while another person may have a mouthful without such severe consequences. As far as I know no "safe" level of mercury has ever been determined because at *any* level it can be very damaging to a persons health. I think that genetics and other conditions in the body play the biggest role in who is more severely affected.

I would say that its very likely that you would have some issues with it....only because from what I understand its a big part of the whole chronic lyme picture. The couple people whom I've talked to who do ART have said that they do find the metals in nearly every patient with chronic lyme...it may not always be a huge issue...but definately an issue. Its one of the big stressors that makes it difficult for the immune system to recover.

People who dont end up with bodies that are overcome with toxins are probably much better at detoxifying. Some of us are just more "challenged" in that area.

I think mercury is even more difficult to diagnose as a problem than Lyme. For me ART has been the biggest help in figuring out what is behind my symptoms. All of the other tests couldnt really say for sure what was bringing me down the most.

My personal opinion is that many people who cant get past abx and continue to relapse are not able to do so because they are not dealing with this issue. Not saying that in every case its the mercury but in many. If a person is living in an environment where they're exposed to molds or some other toxic substance...obviously that would also be an issue which would continue to bring the immune system down.

This is the probably the #1 reason I would suggest ART to anyone who's treating chronic Lyme. We can have the best LLMD's in the country but if they cant identify mercury as a stressor in the body....a critical part of treatment might be ignored. In my mind that leaves the door open for a relapse once the lyme load is down and meds are stopped.

If we all had no difficulties in detoxification then I believe provoked urine tests and hair analysis's would provide more useful info....however, if that were the case we wouldnt need those tests because we wouldnt be sick.

When it comes to these tests the difference between ASD kids and normal kids is that normal kids show mercury is being excreted in significant amounts...it shows up...whereas the ASD kids have very low levels of mercury (if any) showing up in these tests. They can be exposed to the same level of mercury and yet some kids just dont excrete it. Those are the ASD kids.

Some of us have more difficulty detoxing....whether its genetics or some other reason...its just seems to be obvious that thats one of the main factors as far as who has chronic health problems and who doesnt. If we have impaired detoxification it would seem very likely that we cant excrete the heavy metals as well as those without impaired detoxification.

Thats why I would recommend ART for getting a more clear picture of how metals might be affecting you....which ones, where they're located and what treatment options would be most helpful.

There's noone on this planet that doesnt have mercury in their body....its just a matter of finding out how much its stressing your body right now. And you never know....it may be a bigger burden to your immune system than the Lyme...in which case you'd have a really difficult time getting rid of the Lyme.

Treating the metals (if they're a problem) could be the difference between successfully ridding yourself of the infections or continuing to battle them for years. In my opinion its worth looking into the metals.

If not for ART my LLMD would be looking at my urine analysis and interpreting it as though the metals are not an issue for me....and that the chelation I had was successful in removing them. Which is exatly what he did. He's fully aware that blocked pathways can prevent the metals from coming out but since he doesnt have the capability to determine whether or not metals are still there he's ready to move onto other things....like Lyme (again).

I trust Amy and ART...so when she tells me that the metals are the issue and Lyme is not the issue for me....I believe it. This has also been my gut instinct long before I ever had an ART session and I would feel extremely frusterated having to rely solely on the results of the urine tests and feeling that they werent telling the whole story.

Fortunately for me, my LLMD also has a great deal of respect for Amy and if she says the metals are still the problem...he believes it and he's willing to do whatever it takes to get them out. :)

I think if you tested poorly for mercury then its obviously a stressor to your body...but to what extent? What if Dr. H. tests you and the levels are low? All 3 of my challenge tests showed low levels...nothing significant. Yet, I got sick after high exposure to mercury and in every ART session Dr. Amy has found mercury to be my #1 problem.

I think my advice to anyone with chronic Lyme would be to try to keep an open mind and remember that its a multifactorial disease....many factors are involved. Mercury is a known factor in chronic lyme disease....in my opinion it should be investigated as thoroughly as possible. Being extremely toxic and harmful to the body if its an issue...its certainly one that you would want to address. If mercury is bringing you down...abx can only do so much...you also need a strong immune system to keep the bugs at bay after abx treatment.

Thats the main reason I would recommend an ART session with Amy at some point....so that you can find out more than what you can determine with the challenge test.

If you test and it shows high amounts of mercury being excreted then I wouldnt worry as much...it would mean you can excrete it quite well and you can continue chelating till it stops coming out. Usually thats not the case though...usually its not coming out quite so easily because detoxification is impaired in those of us who have chronic illness...or chronic lyme.

Personally, the only test I'd trust as far as letting me know if and when the metals are no longer an issue would be ART.

I did have traditional muscle testing prior to my LED treatments and I remember the Dr. (another LLMD) showing me what kind of affect mercury was having on my body. He placed one vial on my lap and then with the muscle testing he showed me how it was affecting me. He then placed another vial and showed me again. I remember he said "With these in your lap you couldnt hold your arm up if you tried" (and I couldnt).

He said one of them was mercury and the other was sulfa. They were both huge stressors and he said that mercury was profoundly affecting me. He said " Yeah..it's messing you up pretty good". It doesnt necessarily mean that I have tons of it...theres no accurate way to determine total body burden. It doesnt really matter because whether its a small amount or a huge amount...if its putting that much stress on my body...I definately want to get rid of it.

If metals are there your immune system will do much better without that heavy burden.

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