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Rachel--24

Omg...i Might Be On To Something

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Donna,

I wanted to post this for you. I do think the ALA was most likely causing your Charlie Brown yukiness. :(

Anyway...this is from Anna's original report to Dr. S.

Did heavy metals show up in your BioSET testing??

Heavy Metals:

Sensitivity to heavy metals indicates a high correlation between the presence of heavy metals, an inability to excrete metals because of immune sensitivity interference and the symbiotic relationship with candida strains and other yeasts for heavy metals to bind in the body, increasing the difficulty in excreting these metals.

When the body tests positive to a heavy metal, from an immune respective, during any chelation process, once heavy metals are mobilized, the immune system will react as if in an acute exposure and attempt to redeposit the metals, interfering with excretion.

The result is lower excretion levels and side-effects from the delayed excretion of heavy metals and the effects of re-deposition of metals in the body facilitated by the immune system.

This can be avoided by making sure the rate of mobilization does not exceed the body's rate of excretion, to ensure that detox pathways are working optimally, and to ensure that the chelation product, whether it is an herb or chemical product is correctly dosed according to the body's rate of excretion.

-----------------------------------------------

Basically most of us who are mercury toxic will *react* the the metals once they are on the move. The immune system reacts and this totally interferes with the process...the immune system tries to re-store the metals.

The other thing that commonly occurs is that you become reactive to the chelator...especially when first starting a chelation program. Because the chelator is bound to the metal...the immune system can react to both the metal AND the chelator.

If you are pulling out more than you can handle you end up causing the immune system to redistribute alot of what you are mobilizing.

The dose has to be just right for your body's ability to excrete what is mobilized....otherwise you get alot of symptoms....especially affecting the brain.

Since ALA isnt an effective chelator on its own (without DMSA or DMPS) its very likely that the metals were getting moved from one area to the next causing alot of immune reactions and redistribution.

I'm glad you cut down the dose and hopefully the smaller dose is better tolerated. :)

Be careful with it.

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rachel please ck your email sent a summary i saved from list serv i think you'll want to see.

j

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Rachel, I'm so sorry you had such a cr**py dr's appointment, but thanks so much for sharing your experience...I have got to the stage where I'm pretty much just using my dr for ordering tests too. I'm glad you got your CT scan ordered. I hope your whole-body drs can get to the bottom of things for you.

In the UK it's extra difficult I think, because the NHS GPs will generally only see patients for 5 minutes, so they never get a full picture of what's going on. As you know, I've been very down recently, and this morning, in my bath, I just cried and cried. I'm so fed up of feeling rubbish and depressed. My NHS GP has diagnosed loads of symptoms (a lot with my help, I might add) but never gets to the bottom of what's going on. I feel like I'm being told that it's all down to my state of mind ie depression and anxiety, but I'm pretty convinced that my emotional state is a symptom rather than *just* a cause (although I accept that being depressed makes the physical stuff worse)

The problem here, is that to get any sort of *alternative * treatment, we have to pay. But, having read your post Rachel, I know that's what I need to do. I need to stop listening to the lies and get my whole self treated. I've just got to convince DH now that we should spend the money and explain to my GP why I want copies of all my bloodwork released (another lecture from him about not reading too much on the internet coming up, I fear).

Since coming off my strict diet, my aches and pains have become lots worse, with hip pain being really bad. I need to look into the oxalate and nightshade connection, but I need to get more on an even keel before going drastic with the diet again, although it's a catch-22, coz I'm not sure I'll be able to get on an even keel without sorting out the food issues. This is why I need professional alternative help.

<<sighs>>

sorry to be on such a downer. I feel I'm under that cloud with Donna. Still, without the inspiration of you guys here (especially Rachel's persistence), I think I would be abandoning all hope and going back on ADs, which I know would be bad news. Thanks everyone :)

Hugs

Susie x

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Dear Judy,

I am glad I could be of service! ;) Typing that out is worthwhile if it helps others. There is so much information, and so little time! All of the it is so fascinating! Luckily, I speed read!

It is exciting to see Jenny McCarthy and others informing the world properly on autism. So much is related to it. Preventing it can be done in some cases. In others, it might actually be reversed. As frustrating as it is, the medical community often refuses to admit vaccines, mercury, gluten, casein, and other things contribute to autism.

I agree that parents play a major role in whether or not their learning disabled child succeeds. Parents have to advocate.

My parents did all they could to help my brother. As with your son, it made a big difference. My brother actually graduated high school with a 4.0 in all regular classes! :)

Here is a little information on Sherry (mftnchn) for you. She is currently in China until sometime in the winter on business. She does some fascinating work. Sherry has additional intolerances and has had to do a lot of experimenting with diet. Soy and dairy have been problems for her on top of gluten. Unfortunately, Lyme is yet another problem she has to deal with.

You were on Vioxx as well? My mother was put in the hospital because they thought she was having a heart attack while on it! Thank God she was pulled off of it before she had one! Vioxx is only one of the awful drugs they had no choice but to recall, despite knowing up its release it would kill a lot of people. The FDA lets crap like that on the market, but tries to get rid of Stevia. This makes it obvious who the FDA is protecting, and it is not us!

Sherry takes Flagyl a couple of time or so a week. She also does detox baths when she can. I believe some supplements such as charcoal and spirulina are something she is planning to start as well. Her health issues were a lot better after getting treated for Lyme. However, other issues remain. I hope this helps a bit.

Dear Rachel,

I am so sorry about the lousy doctor appointment! :( What an idiotic physician! What is next? Is she going to claim to have saved the world from sin? :rolleyes: I hate know-it-alls!

My father is one of those people. He argues about anything and everything. The other day, I told him he could not use the microwave while I have the stove going, because it will blow the fuse. It happens every single time anyone tries it. Naturally, he argued. I told him "Fine, but when it blows out, you are going to go down to the basement on the circuit breaker to flip the switch!" :angry: A few seconds later, it went out. I told "God" to go down and flip the switch! :rolleyes:

I hope something shows in your scan so you can say you told them so! I had no idea fungus could show up in one of those. That is surprising. I thought it was practically invisible. At least you know what to expect since you had one before.

Aspergillus has oxalates? Who knew? :huh: I never even thought of that. No wonder it is so bad for so many people. I wonder if my mother's best friend has trouble with it. She actually nearly choked on her own blood, because a vessel exploded in her nose cavity area. They had to stick balloons up her nose to stop the bleeding!

Now, here is the shocker. The doctors had no idea what caused it! Yeah, that is new. I think that doctor you had is a complete moron. Every situation is different. Not everyone exposed to aspergillus gets bloody noses and black eyes. I assume this means allergic shiners, right? I know one of my classmates that was exposed to both Penicillium (I think) and Aspergillus lost her kidney from it.

It sounds like no one should take ALA without a chelator! That stuff sounds dangerous on its own. Redistributing the metals does absolutely no good. If anything, it aggravates the body. I am not going to take ALA unless chelation is also involved. No wonder Donna felt off.

Dear Donna,

That is good you are doing better! The ALA must have done it to you. Since you feel better with less, it makes sense. Being in a funk is awful. Breaking out of it is hard. Once you do, the cloud goes away, too! :)

The new office sounds nice! Trees always are good viewing. Watching them sway in the breeze is very relaxing. I enjoy doing that as well. Your co-worker is very sweet to put the picture up for you whenever her door is closed!

Dear Andrea,

I could not believe that doctor Rachel saw, either! Don't you just love the fact they are so sure of themselves. All of them see people like us as hypochondriacs. Western medicine is such a disappointment. I have gone further and further away from tradional approaches.

I just realized I still need to send you my e-mail! I am going to PM it to you as soon as I post. That way, I will not get involved in something else and get too tired to do it later. The kitchen is a mess, and I need to get something done. I am also in middle of cooking some meat for myself. My wok needs cleaned and derusted before I can use it.

Dear Sherry,

I was wondering if you could tell me more about brushing. Didn't you say you have done it for detox before? I think Carla and Donna have done it as well. Is there a site for it? I do not know much about it, and would like to know more. It might be a good way for me to detox a little.

Dear Ami,

I have read a lot about tryptophan being good to aid sleep. That is probably why peanuts make me so sleepy. They have a lot of it and/or tyrosine. These amino acids are very helpful in keeping you calm. I often get a bit too calm! :lol: That might be why I am so sleepy so often! At least I finished my peanut butter binge, so I will not get anymore.

Dear Susie,

I am tired of being depressed and sick as well. In all honesty, the source of the depression is being ill, not the other way around. Doctors always blame the physical symptoms on the mental ones. I was on ADs as well, and they do nothing for me, because they do not give me more money or make me feel better. Unfortunately, getting off of it is very difficult. You have to be weaned, and even then it is risky.

I have gotten the lecture about not reading so much about health on the internet from doctors as well. If all this information is so bad, then how come I used it to diagnose myself, and was right? :blink: Listening to your body is key, not listening to your doctor. I would have had my gallbladder rupture inside of me had I listened to my GP at that time. Thank God for intuition!

The weakness after long, hot showers is common in people with Neurally Mediated Hypotension. I bet that is what we have.

Look it up. We both have all of the symptoms. The low blood pressure is often not remarkable to doctors, but is enough to cause you to be severely tired and miserable. NMH does lessen with consuming salty foods. I noticed I feel better after eating potato crisps or something.

Doing a strict diet again would be a bad idea in terms of carbs especially. If you have hypoglycemia like me, it makes you mean, weepy, and kills your serotonin. There is a diet called The Zone that helps naturally balance your brain transmitters.

It is basically 30 percent fat, 30 percent lean protein, and 40 percent carbohydrate in every meal or snack. It helps balance blood sugar as well. A biochemist discovered it.

Dear Patti,

I cannot blame Rachel for wanted to strangle that doctor, either! She deserved it! Why do they let these stupid people become doctors? :blink: WTH is wrong with this planet? I am so tired of bad doctors! :angry:

Canada can be traveled around! That is true! However, we do not know if it can travel around you! :lol: That is hilarious! I love it! I heard all the cows are moving to Canada. No one knows why.

Sincerely,

Jin

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....

Ok--stupid report :ph34r:

I had a cup of tea with almond milk and some Enjoy Life Chocolate Chips yesterday. I don't know if it can affect me this fast, but I woke up this morning sore and achy all over. Not sick like a virus, but achy. My fingers are stiff, too but that's probably due to the Lay's Stax :ph34r::ph34r:

Everyone who knows me knows I need proof, so I went for it yesterday. My stomach is fine, it feels more like those first days after I started the calcium. Interesting.....

Chocolate makes my fingers hurt. I need to prove that to myself repeatedly. :(:ph34r::lol:

OK STUPID REPORT #2 :ph34r:

CHOCOLATE PUDDING 'gluten-free OF COURSE' TREAT WHILE WATCHING 'DWTS' (YOUR FAULT PATTI).....AND THE SAME. :ph34r: DO I HAVE TO ADMIDT A DAMN 1 SECOND SQUIRT OF WHIP CREAM' ON TOP... :ph34r:

I'VE BEEN SO DAMN CAREFUL.........AND JUST TESTED.............NO CASEIN FOR SOOOOOOOOOO LONG

....

I TRIED SOME CHEESE RECENTLY TOO, IT HAD BEEN A COUPLE OF MONTHS AND NOW I KNOW I STILL CAN'T EAT IT. :(

....

And thank you for the Rachelville info. Why do you all speak of it in the past tense? Can I be minister of research for Rachelville? Or, um, town jester?

xoxo

Florence (catesfolly)

Hi FLorence, I still think of Rachelville a happening place though it is much quieter these days than it once was, you can be anything you want to be in Rachelville as long as you observe the spirit of Rachelville. :)

Hey you all,

.....

I think it's really a question of what your own body can handle and at what stage of gut damage. For me right now because I have had non-stop diarrhea for two years and fewer than a dozen "good days" I feel like I have to eliminate EVERYTHING that is hard on a damaged gut -- casein, lectins, gluten, oxalates, nightshades, blah blah blah. But it seems like this is highly individual and only through experimentation can we figure out where we are. I think my guts are in the very early stages of healing -- I had hoped, after more than a year of dairy and soy and gluten free, that I would be farther along, but I think now that eating more nightshades and oxalates than I did before being sick probably has delayed my recovery. Or at least that's what I'm guessing for the moment.

.....

Your description sounds a lot like me, after going gluten and dairy free in May of 2006 I continued to eat nightshades until October of 2006, lots of nightshades and then giving them up I was loading up on oxalates without realizing they were a problem too.

....

I think for the very 1st time in my life, I can say I "needed time to process".

I'm tellin ya, I've been hangin around these threads so much, I might be turning into a chick!! :lol:

Last week, no doubt about it, was also the very 1st time in my life, I actually understood the phrase "a good cry". Such a foreign concept to me. ......

Tom, it is good to find you here, I appreciate your voice. :wub:

And....

There are worse things than turning into a chick. :P

.....

Jeesh--good luck with your move. We have to be out of here on the 29th of next month--and as of today have not found another house :o If we don't get our butts in gear and make a decision, we may end up on Judy's doorstep :lol:

Now that sounds like a pajama party. :D

to be cont'd .....

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I'm thinking the Aspergillus might be the main culprit for me. Even though I do experience some gut problems (Patti do you recall the sweetpotato/yam weight loss heinosities??) the vast majority of my pain and inflammation is from the shoulders up. Mainly in my neck/head.

....

Rachel, I remember the sweet potato/ yam misery. :( I've switched to butternut squash, have you tried that?

...

An alkaline diet is about ph balance (alkaline/acid balance) in the body. A typical western diet high in meats, sugars, processed foods, alcohol, saturated fats, etc causes the body to be over acidic and this is when disease is thought to set in. The principles of an alkaline diet are to eat foods that are alkaline forming in the body.

...

This is where my brain gets befuddled, do you drink lemon juice to alkalize the body? And is alkalize a word? :lol:

Hey all-

sorry haven't been posting, but i think i finally caught up. There has been alot going on and i have been overwhelmed(as usual)

I am gonna try to get my mind to work long enough for a quick update-

Ok i got my test results back yesturday- I will post details later but for the most part they did go down which is great because at least it means we are going in the right direction. THe one thing is mercury was the same and this time i did not have the DMPS as a provoking agent so it probably means mercury is higher but i kind of expected this would happen once the other metals started getting out.

......

Miamia, that is wonderful news, I missed you too. :wub:

A new Susie, hello and a new niece for you, how wonderful. :)

...

rinne, what kind of detox bath were you doing? Just comparing notes as i am trying to decide whether or not to try on. I also have all my materials for castor oil packs, I used to do them ALL the time several years ago and I haven't in a long while, but I am ready to get going with them again. I have to wait a week since I was told NOT to do them during mentruation (sorry too much info for the guys...but it's true!). Are you noticing any positive affects?

.....

Julie, I use salt, epsom salts and baking soda, sometimes separately and sometimes together, usually about 1 1/2 - 2 cups and I try to keep the water hot and stay in it for at least 15 minutes but I am very careful because I have triggered migraines doing it. That was in the past and I think I was just so toxic that that was enough to overload my detox pathways, I can handle more heat now. I seem to remember a suggestion to stay in the bath for 40 minutes but I can only do that if I add cooler water and I do that sometimes.

I do find the castor oil packs helpful, although I never experience them as totally relieving my symptoms my sense is that they are another tool I use to tip myself toward health.

.....

Julie..........how would you like it if...................you were me............the mom who's son's ped...said..woops..........." We gave him the MMR to young' (at 9 months) so have to give again at 15 months and DID it...........

THEN HE GOT IT AGAIN WHEN ENTERING COLLEGE.

MY SON IS A FUNCTIONING DYSLECTIC......................AND BOY DID WE HAVE TO ADVOCATE FOR HIM ALL THROUGH SCHOOL.

SPECIAL PRIVATE SCHOOL FOR 5 YEARS THAT COST MORE THAN HIS WHOLE 4 YEAR COLLEGE TUTION...............

THIS IS A VERY 'FIERY' SUBJECT FOR ME TOO.

HUGS ALL

J

HUGS and :wub: JUDY, I CAN FEEL THE GRIEF AND THE FIRE. I AM SO GLAD THAT HE HAD YOU TO FIGHT FOR HIM.

....

I'm doing OK- on mega amounts of abx, etc for the Lyme (found out I have babesia, bartonella, mycoplasma and erlichiosis) so treatment has NOT been fun but I'm managing to hang in there and hold onto hope.

....

Hi Beverly. :wub:

.....

I feel like the rain has lifted...the cloud may still be following me, but it stopped raining. :lol: I'm pretty convinced it had something to do with the ALA. I have all the same problems and issues, but feel much lighter about the whole thing.

....

:wub: That is wonderful.

Andrea, thanks for asking and I am feeling a little better. I will stay with the low oxalate diet for a while and see what else happens. How are things with you?

I found a neti pot, just the cutest little pink pot and I tried it and I did feel clearer afterwards. Thanks for the tip.

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you can be anything you want to be in Rachelville as long as you observe the spirit of Rachelville. :)

I love that Rinne. :)

Catesfolly is in the Oxalate thread....I will transfer your replies to her posts over to that thread. :)

Rachel, I remember the sweet potato/ yam misery. :( I've switched to butternut squash, have you tried that?

All of the squashes bother me (even more than the sweet potatoes/yams) actually. I'm pretty sure they are all high oxalate. I know summer squash, acorn squash, zucchinni, pumpkin, butternut and winter squash have all brought on symptoms....I avoid them...I squash the squashes. :P

I found a neti pot, just the cutest little pink pot and I tried it and I did feel clearer afterwards.

Where do I find a neti pot?? I want to find the cutest neti pot too!! :)

Definately not pink though....I dont think you will ever find anything pink anywhere in my world. :P

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I feel like I'm being told that it's all down to my state of mind ie depression and anxiety, but I'm pretty convinced that my emotional state is a symptom rather than *just* a cause (although I accept that being depressed makes the physical stuff worse)

This is exactly what I went through with the Dr.'s trying to force the AD's on me. Yes...the depression does make the physical stuff worse....no doubt about it....but I knew 100% that this was a symptom of whatever was going on with my health. My brain was affected by whatever it was that the Dr.'s couldnt figure out. The physical and the emotional were all connected.

I dont like to mask my symptoms (even if they are miserable) with drugs because I prefer to feel what is going on with my body. Thats actually how I got to be really in tune with my body, what foods to avoid, what environmental things to avoid, what chemicals bother me, etc. I couldnt have gotten to where I'm at now if I'd have listened to the mainstream Dr.'s and taken all their symptom-covering-up drugs.

Diet was the #1 thing for me. I have no depression as long as I avoid the foods that bother me. A moldy environment and strong chemicals can also trigger depression for me but I'm not usually exposing myself to that.

I'm sorry you're having a bad day. The cries used to help me alot....just letting it all out is good and I used to feel better after a good cry. Hopefully you feel a little better now too. :)

The problem here, is that to get any sort of *alternative * treatment, we have to pay. But, having read your post Rachel, I know that's what I need to do. I need to stop listening to the lies and get my whole self treated. I've just got to convince DH now that we should spend the money and explain to my GP why I want copies of all my bloodwork released (another lecture from him about not reading too much on the internet coming up, I fear).

I have to pay for the alternative stuff as well.

All I ever had to pay my HMO was a $10 copay....but I literally spent hundreds of dollars on these non-productive 5 minute appts. Then my co-pay went up to $25 and I was spending thousands. I was going to see all different Dr.'s at 3 different facilities...I was having dr. appts at least twice a week during the 2 years I was off work.

Now I'm paying alot. For some of my tests/appts insurance covers 50% because two of my alternative Dr.'s are actually MD's. The rest is all out of pocket.

I'm actually happy to pay for it because I feel as if I'm finally on the road to recovery instead of wandering around in the dark. I dont want to settle for less when it comes to my health. I want to get better and I dont mind spending the money to get there.

I hope your hubby can understand how you're feeling. :)

I did have alot of "stay off the internet" lectures thrown at me during the first couple years but now everyone is very supportive and very happy that I didnt take their advice. :)

Since coming off my strict diet, my aches and pains have become lots worse, with hip pain being really bad. I need to look into the oxalate and nightshade connection, but I need to get more on an even keel before going drastic with the diet again, although it's a catch-22, coz I'm not sure I'll be able to get on an even keel without sorting out the food issues. This is why I need professional alternative help.

The diet can be very rewarding. This is something you can do on your own without the help of any Dr. I dont think I could have ever gotten myself on an even keel w/out sticking to the diet restrictions...that is what enabled me to start functioning, to think clearly, to come out of depression, to have much less pain...and to be able to work again!!

sorry to be on such a downer. I feel I'm under that cloud with Donna. Still, without the inspiration of you guys here (especially Rachel's persistence), I think I would be abandoning all hope and going back on ADs, which I know would be bad news. Thanks everyone :)

You're not a downer. We all have good days and bad days and the best part about this thread is that people are here for you no matter what. :)

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FLORENCE---QUOTE--

I feel like I have to eliminate EVERYTHING that is hard on a damaged gut -- casein, lectins, gluten, oxalates, nightshades, blah blah blah. But it seems like this is highly individual and only through experimentation can we figure out where we are. I think my guts are in the very early stages of healing -- I had hoped, after more than a year of dairy and soy and gluten free, that I would be farther along, but I think now that eating more nightshades and oxalates than I did before being sick probably has delayed my recovery. Or at least that's what I'm guessing for the moment.

.....

RENNI--QUOTE--

Your description sounds a lot like me, after going gluten and dairy free in May of 2006 I continued to eat nightshades until October of 2006, lots of nightshades and then giving them up I was loading up on oxalates without realizing they were a problem too.

THIS IS ME EXACTLY. :(:ph34r::(

I THINK THAT I'M 'DEFEATING' THE ACROPHOBIA AGAIN.................I HATE IT..........GOT IT THE FIRST TIME AFTER SURGERY FOR THE GOITER THE SIZE OF LARGE GRAPEFRUIT...THEN HAD HYPOGYCEMIA....AND WAS STILL TEACHING EVERY DAY BUT THE ANXIETY ATTACKS WERE HORRID.......IT PREFACE THIS B/C I DON'T EVEN CARE ABOUT THIS PRIVATE INFO NOW MIGHT APPEAR ON THE WORLD WIDE INTERNET............IT'S THE ONLY PLACE I FEEL SAFE AT THIS SECOND.

DEEP BREATHES................SLOW BREATHING JUDY.....................HERE I GO..............

SO EATING CORRECTLY...........TO BED AT A DECENT TIME LAST NITE AND UP AT 7:30 AM ...UNUSUAL FOR ME..........EARLY........GOT GARDENING CLOTHES ON WITH THE STOCKING AND ALL THE STUFF I HAVE TO DO TO GO OUT....

FEELING PRETTY SECURE........ENJOYING THE WEATHER AND THE OUTSIDE BREEZE..........HAD 2 CUPS OF COFFEE FOR GOD'S SAKE..................NO LIKE IT DID COKE........... :ph34r: IT WAS DAMN COFFEE THAT I'VE BEEN CUTTING OUT FOR LOD....

I'M LUGGING POTTED TREES AND RE-POTTING FOR INSIDE IN THE WINTER.........

RE-POTTING PLANTS TO BRING IN...............I'M FEELING REALLY PROUD AND STONG...........DAMN IT

THE 'D' HITS. EDIT BY JUDY.........TOO MUCH GRAPHIC DETAIL EVEN FOR ME I AM GOING BACK OUTSIDE AND IF IT HAPPENS AGAIN............DAMN IT ..................IT'LL DO IT ALL OVER AGAIN.

HAS ANYONE EXPERIENCED THIS WITH THE OXALATE DUMPING.????

GOING TO POST ON THE OXALATE THREAD TOO.................JUST SO SICK AND TIRED OF BEING SICK AND TIRED OF ALL THIS...................................HELL SHOULD HAVE WRITTEN THAT BOOK FIRST..............

CATCH YOU ALL LATER AND THANKS FOR LISTENING.........................I'M TRYING TO HANDLE MY ANGER BETTER.........................NOT KEEP IT INSIDE...................PHYSICAL WORK SEEMS TO HELP ME WHEN I CAN PHYSICALLY GET MOVING. THIS MAY NOT BE UP LONG AS I MIGHT CHICKEN OUT AND DELETE IT.

THANKS FOR BEING THERE...............AND LISTENING TO MY RANT.

JUDY

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Awww Judy. That damn coffee! :angry:

You are one strong lady....I know you can get frusterated (we all do) but you wont give up cuz you're a fighter just like the rest of us! :)

Dont let it ruin your day....get back in the yard and continue with what you love to do. :)

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Dear Patti, Judy, and catesfolly,

Were these posts on this thread? :huh: I did not think so. They must have come from the oxalate thread. If they were on this thread, I never saw them for some reason. I assume they were from the oxalate thread, though.

Dear Patti,

I am sorry to hear the Enjoy Life Chips and Lay's Stax caused unpleasant effects. :( I cannot control myself with the Lay's Stax! It is so easy to eat a half of a tube in a sitting! I have been on a peanut butter binge lately. I ate the last of it, so no more of that!

Dear Judy,

Casein does not seem to be my problem. It is actually lactose. Anything like yogurt or pudding makes me feel pukey. That is what gluten does to me, too. I am afraid to try yogurt or pudding again, although it has been months since I tested it.

I am sorry to hear about the D. :o That is awful! Goodness, you sure are a tough chick! I admire that very much. I know what you mean about having to keep cutting things out. It is difficult enough to go gluten-free, but then to go without dairy. Then, there is soy, corn, etc. I cannot have yeast, so that pretty much kills half of the food on the planet! :angry:

Dear catesfolly,

You can be anything you desire in Rachelville! :) I am the purple-glittery bat keeper, as well as the DA. I also own the Silver Dragon Chinese restaurant! I decide holidays as well, due to being the DA. We have all kinds of great jobs for the taking. Oh, Donna, Kat, and I share in the Queen of Lazy category, so we do not get too tired! :lol:

It is true everyone's system is different. You just never know what could be the trouble. So many things can disturb the body. Celiacs seem most prone to these issues, but Lyme patients certainly seem to be a close second. Sometimes eliminating everything seems to be useless. I think each person's system is very unique, and only rotation diets and ART or BioSet can really identify the actual troublemakers.

Dear Rinne,

I am sorry you still cannot eat cheese. :( Maybe one day you will be able to have it again! I can have cheese, because I seem to have a lactose issue instead of one with casein. My brother does not even tolerate cheese, so he may have more of a casein issue. It is so interesting how we all have specific intolerable foods.

That is great about your neti pot helping so much! :) It sounds adorable, too! I am very girly, and love pink! I think my mother has one somewhere. If I can find it, I should try that thing! Maybe it will help those sinus-induced migraines I get.

Dear Rachel,

I agree that the mental anguish only intensifies the physical suffering. The question is, how do we cut down on the mental anguish? Maybe that is where the EFT comes in. I am anxious to learn about that. I am willing to try it.

A good cry really does help make you feel better physically as well. I noticed after I have a good cry, I am much calmer. I also sleep better. All of that tension comes pouring out with the tears! It may not fix anything going badly in your life, but somehow relieves the stress. You are able to cope better with it that way.

Sincerely,

Jin

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Judy, sweetie, do not let that d--n D spoil your day or keep you from doing what you set out to do.

I am struggling with the same type of anxiety--it's so hard to pull yourself up from this and start over--but you are strong and you can do it!

This one step forward and two steps back gets so very old sometimes. You are one of the most spirited, smart and tenacious people I've ever met. This will NOT beat you--you ARE going to beat it ;):D

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Dear Patti, Judy, and catesfolly,

Were these posts on this thread? :huh: I did not think so. They must have come from the oxalate thread. If they were on this thread, I never saw them for some reason. I assume they were from the oxalate thread, though.

Dear Patti,

I am sorry to hear the Enjoy Life Chips and Lay's Stax caused unpleasant effects. :( I cannot control myself with the Lay's Stax! It is so easy to eat a half of a tube in a sitting! I have been on a peanut butter binge lately. I ate the last of it, so no more of that!

Jin,

I'm not sure which post you mean, but judging from the names, they are most likely on the Oxalate thread if not on here.

Yes, the chips (my only source of chocolate) are high oxalate, so no more for now. :angry: I so know what you mean about the Stax--I could eat a whole tube easily :D

Have a good rest-of -the-day everyone. Off to look at houses....today and tomorrow. I'll check in later :)

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I did a quick search on the Lyme board last night....found that other posters have had the Aspergillus problem as well. Most of the posts I read were aspergillus sinus infections....a couple had aspergillus seen in the blood.

NOONE mentioned black eyes and blood coming out of their nose as a result of the aspergillus infection. :rolleyes:

I've been on my "bug killing" protocol for about a month now. I'm taking Banderol and then need to switch to Cumanda after one full month at my full dose of Banderol.

It took me a month to get to my full dose of 35 drops twice a day with the Banderol...I got there with no problems and experienced very little die-off symptoms.

I've read alot about Cumanda being very powerful. Its antimicrobial, antiviral, antiparasitic as well as antifungal. Its suppossed to be a very strong antifungal. When I make the switch I'm suppossed to just go right into the full dose of 35 drops twice a day.

I'm not gonna do it...I feel like I'm gonna have some serious die-off with this herbal. I'm gonna work my way up like I did with the Banderol. My instinct says to be careful with this one. I want to start it now since I have so many fungal issues but I think I should follow the protocol....which means 4 more weeks of the Banderol. I'm gonna talk to my Dr. about it next week....see what he thinks.

I've read alot of posts about people having severe die-off from Cumanda. I'm thinking its because of the fungal infections and their ability to bind with metals....thats why I'm thinking it would be disastrous for me to start at my full dose of 70 drops a day. :o

I did read this post last night.

I had aspergillus in my sinuses for months that was cleared up with high doses of Cumanda, 40 drops twice a a day, along with a week of rife treatments.

So maybe what will work for the aspergillus is sitting on my moms kitchen counter right now! :)

Its weird because when I first started getting sick after the amalgam removal/replacement I was not able to regulate my temperature...I was either too hot (sweating profusely) or too cold (many layers of clothes but still chilled).

At that time I was still running the back room at work...I had my own office and I was shutting the door and blasting the heater to temps. that were unbearable to anyone who attempted to walk into my office. I did think it was odd that I was having layers of clothing on and even with heater blasting I was still not feeling any warmer. :huh:

Anyways for some odd reason after being off work those couple of years when I returned I would stare at the heater vent in my old office. To this day everytime I'm in that office I stare at the heater/air conditioner vent. I've even inquired about it a few times and mentioned to a handful of people that I think that something coming out of the heater worsened my condition. At first I thought it was because it was connected to the bakery and that I was getting glutened.

I have no idea why I even think of that heater but I just always have. :unsure:

I wonder if whatever is in my sinuses came from that vent cuz I'm so focused on it whenever I'm in that vicinity. :unsure:

I read this.

Aspergillus sp are among the most common environmental molds, frequently present in decaying vegetation (compost heaps), on insulating materials, in air conditioning or heating vents, in operating pavilions and patient rooms, on hospital implements, and in airborne dust. Invasive infections are usually acquired by inhalation of spores or, occasionally, by direct invasion through damaged skin.

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The weakness after long, hot showers is common in people with Neurally Mediated Hypotension. I bet that is what we have.

Look it up. We both have all of the symptoms. The low blood pressure is often not remarkable to doctors, but is enough to cause you to be severely tired and miserable. NMH does lessen with consuming salty foods. I noticed I feel better after eating potato crisps or something.

Thanks for that. Will definitely look that up. I asked a dr once whether it was an issue having such low bp and he said it would mean I live to 100 :rolleyes:

Diet was the #1 thing for me. I have no depression as long as I avoid the foods that bother me. A moldy environment and strong chemicals can also trigger depression for me but I'm not usually exposing myself to that.

Rachel, how did you find out which foods make you depressed? Did you start with a strict elimination diet? I'd like to persevere with an elimination diet, but I'm yet to find one that doesn't leave me really depressed after a couple of weeks. I think the pressure of having to make everything from scratch as well adds to the stress as I'm so busy with work, looking after DS etc.

Susie

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Rachel, your dr saying about the blood and black eyes really cracks me up :rolleyes: It reminds me of when I tried to talk to my dr about candida some time back. Apparently you have to be at death's door to get systemic candida. They actually said, you have to have a severely compromised immune system :rolleyes: (are our immune systems just pretending then?! :lol: )

Susie

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The problem here, is that to get any sort of *alternative * treatment, we have to pay. But, having read your post Rachel, I know that's what I need to do. I need to stop listening to the lies and get my whole self treated. I've just got to convince DH now that we should spend the money and explain to my GP why I want copies of all my bloodwork released (another lecture from him about not reading too much on the internet coming up, I fear).

We are on state assisted insurance and nothing is covered if you don't go to their doctors. We've put everything on credit and are maxed out now. Now I've got to try and come up with money to continue supplements. Things are definately harder when you have to pay out of pocket. Just do what you can.

I've been depressed because we can't do much for at least 2 years, maybe longer.......on top of hubby's pay being real short.

THANKS FOR BEING THERE...............AND LISTENING TO MY RANT.

JUDY

Judy, so sorry about this. Hang in there.......you are a fighter and you will beat this!

Have a good rest-of -the-day everyone. Off to look at houses....today and tomorrow. I'll check in later :)

I'll be waiting for a pm/email update when you're able. :D I'll be thinking of you.

I wonder if whatever is in my sinuses came from that vent cuz I'm so focused on it whenever I'm in that vicinity. :unsure:

I read this.

That's very interesting. :o

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My bad, :lol: thanks Rachel. Of course, I could simply be inviting those low oxalatious folks over here. :lol: Seriously, I will pay better attention.

......

If they are so intelligent, why are so many of their patients not getting well? Vaccines, environmental pollution, metal dental work, casein, gluten, yeast, Lyme, and other hidden factors contribute to autism. One of these days everyone may finally know about it, and the population of autistic children will go down. Perhaps even Alzheimer's patients will decrease in number. Any type of dementia doctors do not know what it is, they diagnose as Alzheimer's. They did that to my grandmother.

The thing is, there are over 200 different forms of dementia. :blink: I cannot figure out why this would be, considering the fact the symptoms are the same for all of them. They medical community always complicates things. :rolleyes: I believe my grandmother does not necessarily have Alzheimer's. The reason is due to the fact they ran a scan on her brain. There were no plaques or tangles that are diagnostic criteria specifically to Alzheimer's.

....

Excellent points Jin.

My grandmother was diagnosed with Parkinson's, she had the shakes, but then towards the end of her life they told my mother it wasn't Parkinson's after all and they didn't know what it was. I remember my grandmother doing her hair every morning, standing in a cloud of hair spray. I think that and the hair dye were strong contributing factors to the shaking.

......I squash the squashes. :P

Where do I find a neti pot?? I want to find the cutest neti pot too!! :)

Definately not pink though....I dont think you will ever find anything pink anywhere in my world. :P

:lol:

I found the neti pot at the Vitamin type health food store.

And what did pink ever do to you? :lol::P

Awww Judy. That damn coffee! :angry:

You are one strong lady....I know you can get frusterated (we all do) but you wont give up cuz you're a fighter just like the rest of us! :)

Dont let it ruin your day....get back in the yard and continue with what you love to do. :)

Well said and so true, we love your fabulous and feisty spirit, enjoy the garden. :wub:

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omg I might be on to something!!

Great lead on the NMH, Jin. Have a look at this link if you haven't already:

http://home.vicnet.net.au/~mecfs/general/nmh1.html

The NMH can explain so many of my symptoms, especially the feeling really rubbish after exercise. That's a major problem for me at the moment, as I have to walk DS to school, then cycle into work, then cycle back to collect him at the end of the day and walk home. It's not a long walk/ cycle by any means, but was making me feel really ill, so I'm having the car a lot now and having to drop DH at work then drive DS to school.

Having read that article, I will definitely up my salt intake and cut out dairy completely (please hold me to that one! No more chocolate :o Can't remember who posted about wrist pain with chocolate, but it is one of those things you have to proove to yourself again and again!!).

Susie

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Getting really excited here :D

NMH can be caused by diabetes insipidus. Not read much on that yet, but its not the same as 'ordinary' diabetes (for which I've been tested and found negative), but can be the explanation for excessive thirst and urination, which I definitely suffer from. I'm thirsty all the time. So I might be getting some more tests run....

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Rachel, how did you find out which foods make you depressed? Did you start with a strict elimination diet? I'd like to persevere with an elimination diet, but I'm yet to find one that doesn't leave me really depressed after a couple of weeks. I think the pressure of having to make everything from scratch as well adds to the stress as I'm so busy with work, looking after DS etc.

My diet change was pretty drastic...I went from normal food (which for me was mainly processed junk) to strict organic veggies and meat. I felt ALOT worse for the first week and then during the second week the depression was GONE...I came out of the fog I'd been living in for two years prior to that.

Its been over two years now and I've never relapsed but when playing around with my diet the past couple years I was able to see how certain foods affected me. It wasnt easy to pinpoint everything and my diet is SUPER restricted but I'm not planning on doing this forever. I kept very detailed journals for a long time as well.

I'm focusing on the underlying issues so that I can hopefully enjoy eating again. :)

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just came back in for something to eat...................hold me ..........................at least i'm trying to eat again.

Renni............I think it's me messing things up with the 2 threads............put quotes from folks on both.........................sorry............................ :ph34r:

BUT

GOOD INFO NEEDS TO BE SPREAD.............................JUST LIKE FERTILIZER ............BUT PREFERABLY IN THE 'DRIED' FORMATION.

THANKS FOR THE KIND WORDS. I DID AND DO FEEL BETTER GOING RIGHT BACK OUT.

EVEN MY PSYCHO CAT LOVES ROLLING IN THE DIRT WITH ME.

THIS IS GOD'S BEAUTIFUL AUTUMN DAY AND I'LL BE DANMED IF I'M WASTING IT.

DIG ON FOLKS.

AND AGAIN...........THANKS FOR THE SUPPORT.

JUMPING JUDY

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The NMH can explain so many of my symptoms, especially the feeling really rubbish after exercise. That's a major problem for me at the moment, as I have to walk DS to school, then cycle into work, then cycle back to collect him at the end of the day and walk home. It's not a long walk/ cycle by any means, but was making me feel really ill, so I'm having the car a lot now and having to drop DH at work then drive DS to school.

That's great Susie!

I think it was Patti that talked about chocolate. Do you guys have enjoy life over there? They make good chocolate chips.

Judy,

Rinne started the oxolate posts over here, you just copied her quotes. That's ok though.....both of you. :D

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Hello everybody,

I have been really busy with school work and trying to get to bed at a decent hour (while still managing to watch grey's anatomy AND private practice :ph34r::P) I have been feeling a little better barring my flu problem that's going on. I have started a diet that consists of 3 oz. of lean protein, 1 cup vegetables (except at breakfast) and 1/2 cup of any kind of rice. Also, 1/2 cup berries or 1/2 grapefruit 2 times a day and snacks (protein and vegetables). I feel SO MUCH BETTER!!! I have way more energy and I'm not really going through any detox of any kind. (Thank goodness!)

I can totally relate to the depression thing, although my therapist (who I'm very mad at right now) tried telling me that's why I am sick all the time also. I told her I think it's the other way around and I have been sick for so long while trying to keep up with my very active friends who don't understand anything I'm going through! She told me she thinks my back/sciatic/leg/SI joint problems are all depression related!! :ph34r: Anyway, I can relate to idiotic people telling you the depression is causing these problems when it's really the other way around.

Jin,

I think that I have hypoglycemia also, and this diet has been hard on me, but it isn't carb-less. So, I'm still getting some carbs ans sugar (the fruit). I am hungry almost an hour after I eat, but I am determined to stick it out. (The main reason I am trying it is because the lovely side effect of Birth Control is WEIGHT GAIN!!!!!!!!!!!! :angry:...so, I'm trying to manage that). I have just also noticed how much more energy I have. I think I need to stay sugar free except fruit sugars, because they make me feel like CRAP!!

Susie,

You can find dairy free chocolate. Some dark chocolate is dairy free. I don't know what the labelling laws are over there, but there are websites that tell you what to look for, so you can still have your chocolate if you wanted. I know Rittter Sport is dairy free...if you have that. The kind we usually buy has 3 ingredients: Cocoa powder, alkalized sugar and one last thing I can't remember. But that is dairy free...and yummy!

Everyone,

I hope everybody is doing well. I will check in later.

Kassandra

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I wanted to post this for you. I do think the ALA was most likely causing your Charlie Brown yukiness.

Anyway...this is from Anna's original report to Dr. S.

Did heavy metals show up in your BioSET testing??

...

I'm glad you cut down the dose and hopefully the smaller dose is better tolerated.

Be careful with it.

Yes, heavy metals showed up in my BioSET testing and in ART. I'm now more positive than ever that it was the ALA. I can't even describe the dark thoughts I was having the last 2 weeks. It was even scaring ME! I feel sooo much better since cutting down the dose. I was taking 400mg per day, so I've cut that down to 200mg divided in two doses. Dr. S is the one who wanted me to take this...so I'm trying to get that right dose to do what he wants it to do but not leave me crazy. :P I was taking another brand which I got from either Dr. S or whole foods and is what was tested by Anna and Scott, but ran out and bought the brand Anna sells...it was a higher dosage per capsule than the one I was taking, and I should have known to take less of it.

Gosh, so sorry to hear of that stupid duck you saw...every once in a while Dr. Rick will want me to get a test that I have to go to the regular doctor for, but I usually just don't go, lol.

sorry to be on such a downer. I feel I'm under that cloud with Donna. Still, without the inspiration of you guys here (especially Rachel's persistence), I think I would be abandoning all hope and going back on ADs, which I know would be bad news. Thanks everyone :)

Hasn't sounded like you've been a downer, but I sure know what you mean. We can just get out our spiffy umbrellas and sit under that cloud together! (Actually, a bit of sun was peaking through those clouds this morning, so hang in there.) I should put up the picture I took in Southhampton...there is a rain cloud but you can see the rays of sunshine radiating out from behind it...hum, that picture might still be up on my profile page, but if not I'll put it there.

Aspergillus has oxalates? Who knew? :huh: I never even thought of that. No wonder it is so bad for so many people. I wonder if my mother's best friend has trouble with it. She actually nearly choked on her own blood, because a vessel exploded in her nose cavity area. They had to stick balloons up her nose to stop the bleeding!

Okay, looks like I have to go read the oxalates thread before it gets TOOOO big...I have asperillus confirmed by blood test so should probably check into oxalates.

THANKS FOR BEING THERE...............AND LISTENING TO MY RANT.

Aw Judy!!! Stupid D! Rant any time you want!

I did a quick search on the Lyme board last night....found that other posters have had the Aspergillus problem as well. Most of the posts I read were aspergillus sinus infections....a couple had aspergillus seen in the blood.

NOONE mentioned black eyes and blood coming out of their nose as a result of the aspergillus infection. :rolleyes:

I can't remember if I posted on one of those threads, but yep, I've got aspergillus problems and don't have black eyes or bloody nose. Stupid doctor! :P

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