Omg...i Might Be On To Something

[mftnchn]

Carla, hope your symptoms are better soon. I can understand your concern about keeping on top of the lyme--after my 8 year battle following diagnosis, I am pretty weary of the ups and downs of it all.

I have some goals to put in place after my transition is over and things start to settle. I am really hopeful that stability will follow.

BTW, the last couple of nights my night sweats are closer to hot flashes in nature...so I wonder if it has been that all along. I do need to do some further research on lyme's response to andrographis and see what the expectation may be. I've been on it now close to a couple of months, with close to 6 weeks on the maximum dose.

Sherry

[tom]

Hi Rinne!

I've been meaning to say hello and how nice it is to see you again.

I hear something about Leonard Cohen every now & then and think of you.

(Not that I haven't also wondered how you were & hoped that the absence was a GOOD sign )

Also, while searching for something else, I ran into one of your wonderfully eloquent posts.

In fact, I'm going to find it.

Here we go . ..

I go through my days parceling my energy out, I am in pain from the time I wake till the time I go to sleep, when I am with people I make my best effort to contain my misery so that I am not leaking it all over them. I am intelligent, articulate, funny and I feel like I am being penalized for not having early dementia. I can walk, dance, paint, cook and do dishes and I credit that to a simple organic diet and a life with little stress; I know that if I ate a processed diet and worked a stressful job I would be nearly comatose and yet I am not taken as a person who is ill because I still have joy in me. I feel like death is stealing the life from my breath and bones and I am often overwhelmed with the desire to simply lie down and die and yet I try to contain that, I try not to feed it and because of that I am not seen as truly a victim of illness.

Still gives me chills to read such an accurate, poetic description of how I, also, once felt.

You're still off the cigs, right????

I'm really getting ready to quit soon.

No really .. . .I AM!!!!!!!

[mftnchn]

Julie, sure hope this does provide and answer. I will be interested in what you find out.

[Rachel--24]

OK....not much time to post but OMG...I had the most exciting appointment with Amy tonight!

I'll be able to post the details tomorrow but just wanted to say that it went really well. Better than I'd hoped for. She is just amazing and for me ART is always an exciting experience.

It was all very positive.

The only "downer" is that mercury is definately "stuck"....its not coming out. It wasnt really a huge shock and we're still waiting to see what the latest doctors data report says...but it does appear to be locked in right now.

I'm not expecting to see any big jumps (as far as mercury goes) on the test results but cant be 100% certain until we see the results.

Since I started researching the sulfation pathway and the problems with phenols and PST I felt pretty convinced that the mercury is probably trapped.

We went over some of the different possibilities and hopefully in the upcoming weeks things will come to light. I dont think I've ever been this excited or felt this close to figuring it all out... it was really kind of a breakthrough for me.

I have alot more to share but for now my pillow is calling me...its been a long day....but definately a good one.

[AndreaB]

I'm really getting ready to quit soon.

No really .. . .I AM!!!!!!!

I'll hold you to that.

The kids are wondering when you're coming up this way again. Travel is easy is to a child's mind.....as long as they aren't in a car for a long time.

OK....not much time to post but OMG...I had the most exciting appointment with Amy tonight!

I can't wait for the update! Please don't leave us hanging for long. Sleep and work are acceptable excuses though.

[tom]

I'll hold you to that.

The kids are wondering when you're coming up this way again. Travel is easy is to a child's mind.....as long as they aren't in a car for a long time.

Hehehehe heehee

It sure was nice to meet you and all of the young'uns!

I will be up that way again of course, but no idea when.

You can tell them I'm looking forward to another visit.

[CarlaB]

Carla, hope your symptoms are better soon.

BTW, the last couple of nights my night sweats are closer to hot flashes in nature...so I wonder if it has been that all along. I do need to do some further research on lyme's response to andrographis and see what the expectation may be. I've been on it now close to a couple of months, with close to 6 weeks on the maximum dose.

Sherry

I think the andographs can cause significant herxing.

Thank you. I think I'm feeling somewhat better now, but it's hard to tell first thing in the morning. I slept for over 9 hours, and we in a deep sleep when Adam finally woke me up to get ready to go.

Tom, good for you quitting! Just remember, men who don't smoke are better looking.

[rinne]

Hi Tom.

I am much better and the quote you included really pointed that out for me, I was very ill then. I am so much better, now I want to lose five pounds. I remind myself that is much better to have a couple of extra pounds than to waste away as I was doing but I am so vain.

I don't know if you should quit smoking, you might just be too happy and good-looking.

Rachel I am looking forward to your report, it is wonderful to hear such strength in your voice.

Miamia, I am sorry to hear that you are still struggling with your body but it is still great to hear your spirit is stronger.

[aprilh]

Has anyone heard of pure water filtration, its when they use steam to make rain for water and its supposed to be 99.9 effective to get rid of bacteria, metals, chlorine and so forth. I have an guy hopefully soming today to give me a quote, since starting tommorow no water at all for an week except to flush the toilet and it will stick like chlorine.

He said it is way more effective then RO water. But im wondering if he is just someone trying to make money off us down here lol.

paula

Open Original Shared Link

Hi Paula,

From my research I have found that distilled water is not good for you over long term use. It should only be used for not more than a month. We had a distilled water unit at my office and I used it for about 2 years. I ended up with negative consequences.

The distilled water can attach to minerals and help get them out of the body. This is great if you have mineral deposits, but the problem is that you can leach TOO many minerals out over time. I believe This is what happened to me.

Also, I have read the molecular structure of the water changes after the distillation process.

Mercola.com has some information if you want to do some research.

April

[aprilh]

Leftovers? Molds / Bacteria

So I'm reading this cookbook about Candida and it says to freeze ALL leftovers until you plan to use them to prevent mold and bacteria growth. Ok.. i cannot do this. I work and have to take my food to work with me. It is hard enough to try to follow all these rules, spend money and now i feel like i'm still not doing enough! I am feeling overwhelmed by this new rule. I usually don't eat something if it's been in the fridge for over a day.. is this OKAY? or am i just putting myself at risk? I am trying so hard but it is taking all of my energy..

I need encouragement and advice.

So far i am not feeling better.

I read this too upon the beginning of my candida diet. What I did was if the leftover was going to be in the fridge longer than say 1 or 2 days, I would freeze it and take it out the day I was going to eat it.

I really only did this for about a month. Then I felt better enough not to be so strict. However, I was very strict on NOT eating sugar, corn products, wheat and dairy. Or anything known to be a "moldy" food. Wheat can be a moldy food due to how they store it in these big giant containers. There is usually mold growing on the top layers.

If its too hard to freeze leftovers, put your energy into just cooking all the fresh food and try not to make too much that will last more than a day or 2.

There is a company that sells mold free wheat flour that has been checked out by someone on another forum. I can get that info if you need it.

April

[tom]

. .. I dont think I've ever been this excited or felt this close to figuring it all out... it was really kind of a breakthrough for me.

That's so great, Rachel!

I am much better and the quote you included really pointed that out for me, I was very ill then.

I probably could've explicitly noted "from 2006" or "A Long Long Time Ago, In a Health-Place Far Far Away".

It is good for us sometimes to be reminded of how far we've come, isn't it?

(Can I order a Rinne bar variety pack yet??)

BTW, yours is the ONLY instance of the word "parceling" in all 1849 pages!

I just loved how you put it - betw the parceling, the leaking misery, and the expressing not being taken as seriously ill.

I'd wager it resonates w/ some who hadn't seen it before, whether guests or newer residents.

I don't know if you should quit smoking,

Now cut that OUT!!!

[Green12]

Rachel,

I went back about 20 pages looking for a informative quote you posted about how epsom salt baths work. It was quite a lengthy quote with a scientificness explanation of the whole process, but I couldn't find it (at least in the last 20 pages).

Do you happen to still have that info on hand, or a link?? If not I will keep searching.

[Green12]

Ok, I found it so you don't have to go digging.

[Green12]

Donna has been really sick with a cold or sinus infection and unable to sit at the computer for any length of time, so she hasn't been keeping up with any of the posts.

She says hello to everyone and she'll be back when she is feeling better.

[AndreaB]

Hope you feel better soon Donna.

[mftnchn]

Miss you, Donna. Hope you are much better soon. Spring inhalent allergies??? At least I am getting that a bit.

Rachel, that's good news and encouraging, look forward to more details.

Sherry

[jerseyangel]

Feel better soon, Donna! I was wondering what happened to you

[Rachel--24]

So last night I told Amy that I have not felt any significant improvement after having done these two rounds of IV DMPS. I told her I feel pretty good overall but still only eating a couple foods and unable to really add in any new foods without running into problems.

She said that I should have had gains by now if it were effective at removing the mercury. So either the mercury isnt coming out...or its possible my symptoms are unrelated to the metals.

I told her the ONLY thing thats made a huge difference for me has been diet. Its been the difference between non-functioning (for the first 2 years ) and functioning pretty well working 40 hour weeks for almost 3 years now. As long as I stay very restricted with what I eat I can function...otherwise...I would be back at square one.

I told her I've been on the Feingold diet a long time and also have had to eliminate alot of other foods on top of that.

We talked about my appt. with Dr. S. but unfortunately I didnt have the latest test results to help us see what was going on with the metals.

Things got really exciting when I started telling her about my phenol sensitivity, PST enzymes, sulfation pathway and everything that I was suspecting. She said she thinks I might be onto something!!

We kind of tossed around a few possible scenarios...starting with a genetic weakness that allowed for "something" to tip the scales for me. I asked if its possible mercury could have overwhelmed my system without having had a genetic weakness to start with?? She said we dont know enough about this yet....theres still alot they dont know about genetics but shes had kids who had phenol sensitivities who were able to overcome it.

She said she'd expect me to have had some early sign in childhood, a history of allergies or some other problems but in my case there were none....so its all very interesting. She said I may have had a weakness that just was never pushed far enough to cause any noticeable problems, it may be the case that my body was having difficulties with phenols all along but then "something" overwhelmed the pathway and now the problem is very pronounced.

We're focusing on the dental work because that seems to be when everything went downhill. She asked about anaesthesia that was used during the dental work and if I'd had any reaction. This sparked some kind of memory...I remember looking into this and possibly posting about it early on in this thread but I'll have to do a search.

She asked if he used it excessively and if I recall reacting. I *do* think that he used it excessively and I recall that when I went back for more work I was requesting that he NOT use the anaesthesia. I dont recall what provoked my fear of the anaesthesia but I know that I was scared enough that I'd have preferred to go without.

So she wants me to find out what was used so that they can test me for it and have Anna desensisitize it if necessary. She will probably also want to see if the antibiotics the dentist prescribed caused any problems. I had already found out that info. last summer (for Dr. M) so we'll check into all of this when I find out about the anaesthesia.

The bone right above where each of those filling were removed had grown out quite a bit right after the work was done. It was VERY unusual to me and I went to about 3 different dentists to find out WHY that bone had grown out...but they were unconcerned.

That area tends to throb when my body is reacting to foods or other things. Amy didnt think this was normal at all...so we're looking into the stuff that my body may have reacted to during the dental work.

I asked if a reaction to the anaesthesia could have led to all of this??

She said if I had a weak pathway it may have been something that could have overwhelmed it. Another thing that I thought of was that I became symptomatic the same month that I quit smoking...which was the same month the fillings were drilled out.

To aid in quitting the cigs I was chewing gum constantly....all day long. It was the "minty" kind of gum. This would be really high in salicylate and could have possibly inhibited the PST enzymes enough that I wasnt able to detox metals (along with other toxins). I think this would only be possible if I already had some weakness in that pathway.

I told her that 2 years prior to getting sick I had some burning, tingling and discoloration around my mouth which lasted 2 weeks and then cleared up. At that time I'm almost positive that I was trying out menthol cigarettes as well as chewing gum. The symptoms went away when I stopped doing that.

Those are the same symptoms I get now from high salicylate foods or chemicals...except obviously now there are ALOT more symptoms along with it.

I felt certain that phenols are involved somehow but not sure exactly what caused what.

Amy was pretty excited....she was looking forward to researching more into this. She was thinking about a little girl patient of hers who is very sensitive to phenols...breaking out in severe hives almost immediately. She said the reactions were occuring in the same areas of the face as me...but in my case there is swelling/burning/tingling instead of hives.

The more we talked about it the more ideas she was getting....which was really exciting for me. Its just such a GOOD feeling to have Dr.'s who care that much and are that excited to try to find the missing piece of the puzzle. It really is an awesome experience in comparison to years of seeing Dr.'s who handed me a prescription and rushed me out the door.

She asked if I'd tried any enzymes designed to help with phenols....something like No Fenol. I told her I've been on it a week now...and also added in Peptizyde and Zyme Prime a few days ago.

She said alot of her kids are on these and do well with them...especially Peptizyde. The ones who are sensitive to phenols do pretty well with No Fenol but they do still have to restrict some foods.

She said if they test well for me she'd want me on them for a month working up to one capsule of each with all meals....then slowly try to add in some new foods.

We talked about epsom salts, saunas, etc.

She felt that I was really onto something with this so she wants to do some investigating this week since she has some free time. She wants to talk with some other Dr.'s and pick their brains to see what they can come up with. She said she wished she'd seen me earlier because she'd just dropped off Dr. Cowden at the airport and she could of talked to him about it...she might still mention it to him to see if he has any ideas.

She asked if I'd had any labwork done for pathways...and if Anna had checked my pathways while I was seeing her. I told her I had problems with the sulfation pathway and the treatments wouldnt hold...I had 3 different treatments and Anna thought something was overwhelming the pathway causing the treatment to reverse. I'm thinking it was probably the phenols.

She asked if I'd been treated for phenols and I told her I have been....I reacted to ALL phenols with BioSET and I was treated but we didnt focus on it because so many other problems were showing up as well. Also, I had a LED treatment for phenols because they did show up to be a significant problem when Dr. M tested me. Neither of these treatments increased my tolerance for phenols though.

During the ART session she took notes on some of the things that came up and her plan is to talk to some of the other Dr.'s she knows who are treating Autism and to get a list of which tests they think would be best for me. She said one of the Dr.'s is treating about 1500 kids right now and she has the most knowledge about metabolic pathways. She wants to pick her brain about this and to find out what tests I should have done.

We'll be staying in contact and she'll let me know what shes able to find out as she looks more into this. In early May they'll all be putting their minds together in a "think tank" for autism...her and a bunch of other Dr.'s trying to put the pieces together. She wants to have all of the lab tests done by then so that she can put them out for all of these Dr.'s to look at and see what they can come up with.

I'm really excited about having all of these great minds look at my test results and history....hopefully they'll be able to figure some things out.

Amy was excited to see what can be learned from this. It makes it alot easier for her to have me doing my own research and also I'm able to tell her everything whereas most of the kids she sees are unable to communicate everything they're feeling.

She doesnt feel that this is extremely complicated. She feels that its something that can be easily fixed if we can find that missing piece of the puzzle. Considering I didnt have these problems for 31 years....there has to be something getting in the way and we just need to find it. She said its like all of the doors are open...but there's one door thats closed and its messing everything up. We need to find that door and open it up.

She said we ARE going to find it.

Well...its been a long time since I've had a monster post....and this is only Part 1!

I have to go get some food....I'll be back later to post about my ART session and what we learned from that.

[mftnchn]

Rachel this is exciting and excellent, and maybe those great minds and their answers will spill over to the rest of us!

Sherry

[AndreaB]

So exciting Rachel!!!

Can't wait for the rest of the update.

[ShadowSwallow]

Donna,

I hope you feel better soon!

Rachel,

That is so exciting!! I can't wait to hear more!

I've been doing some of my own scientificness research on th1/th2 immune system. There's an article that I'm trying to get my hands on about how heavy metals keep the immune system in a "th2" state. Very interesting....

Birdy

[Green12]

Rachel glad you had such a productive appt.

I've been doing some of my own scientificness research on th1/th2 immune system. There's an article that I'm trying to get my hands on about how heavy metals keep the immune system in a "th2" state. Very interesting....

Birdy, if you search this thread there is some scientificness a ways back about the th1/th2 immune system.

[Rachel--24]

I've been doing some of my own scientificness research on th1/th2 immune system. There's an article that I'm trying to get my hands on about how heavy metals keep the immune system in a "th2" state. Very interesting....

Birdy

Birdy,

Like Julie said..theres some stuff about th1/th2 somewhere in this thread. I'll try to look for it later if you're interested. The immune system can become dominant on one side for various reasons. The heavy metals would keep the th2 side dominant and when the th2 side is going full blast there tends to be alot of allergies/sensitivities.

I cant remember all the scientificness though.

[ShadowSwallow]

It would be great if you could resurrect the scientificness for me sometime, Rachel. I've been searching this thread, but nothing's come up.

[Rachel--24]

It would be great if you could resurrect the scientificness for me sometime, Rachel. I've been searching this thread, but nothing's come up.

Ok...I'll try later on before I go to bed.