Omg...i Might Be On To Something

[CarlaB]

Kassandra, with your history, starting out on Mepron and Zith is pretty aggressive!!! Just a few weeks ago you were talking about whether you'd ever be able to take any abx!!

[Rpm999]

i remember you people talking about coffee enemas...i googled it and this was the second link

Open Original Shared Link

is that true?

[CarlaB]

Well, you don't use HOT coffee .... I guess there's always a risk of tearing when you insert something into yourself (though that part is very smooth) ... I think this is alarmist.

My LLMD thinks the are a benefit ... he doesn't recommend them (probably for credibility reasons, though he didn't say), but he did say it was fine for me to use them, and when he was telling me how to deal with monthly flare-up symptoms, he mentioned that would be a good time for them to help detox and produce glutathione.

The part about there being no proof that they work is wrong .... if you Google more, you will get studies .... the Federal Government is even funding a study on their effectiveness in treating pancreatic cancer .... the guy doing the study has had better results than the modern, conventional methods of treating pancreatic cancer.

Coffee enemas were in the Merck Manual from the 1800's till the 1970's for detoxing with cancer treatment.

I have had great benefit from them and feel better on days I use them than days I don't ... so they are a regular part of my treatment.

Alternative methods are always bashed ..... I also have purchased glutathione cream, which has the same effect, and it was over $100 for a month's supply! I use it sparingly .... I'd rather spend the time with the coffee than the money on the cream, LOL.

I remember you mentioning being a teen ... you probably should talk it over with your parents before you do it.

I got so much benefit from them when I had a head cold over Christmas, that my 19 year old daughter went out and bought an enema bag, and tried two of them herself over two days. She did the second one because the first one helped with her symptoms. She would have done more if she didn't have to go back to school. Not exactly something you can do in the sorority house, LOL. She said it was the scariest thing letting the coffee go in there.

[Rpm999]

oh god, sounds intense lol...i was just wondering about it because i heard a lot about it and wanted to see what it was about...not really sure if it's something i would try but i'm all about alternative things so we'll see

oh i was wondering too, since you've had mostly holistic treatment it seems, if you have sluggish/clogged/overwhelemed detox organs, what do you think would help it the most? i pretty much haven't started anything yet and playing it safe (besides trying to eat and drink well) until i get a little more testing and see exactly what's going on, since i'm nearly bedridden and everything bothers me recently...too sensitive

but, i've heard being reactant to many things even such as herbs and supplements can be a detoxing problem which i'm sure can be a problem for people juggling a few illnesses....hopefully i'll see the bioset practitioner soon to get a better idea

but i think it was april that said she tried detoxing herself and it just backed up more because of the detox problem and that's what it seems has happened to me....and the least thing i need is for it too get worst, i'm trying to be cautious until i know it all from having so many encounters recently

but if i DO have lyme or metals, that's definately something that will need to be addressed before i start treatment because that would cause a lot of issues...every reaction i have just seems to add on to the pile and not go away, so i'm almost positive there's issues with that...on top of having a severe acid reflux attack that started all this, i'm sure there's some back up

[Green12]

I needed to tell myself that I'm still in recovery.

Just fatigue, but not overwhelming fatigue like when I was sick ... *just* normal fatigue, which is what makes it seem okay to push through it ... but it's not. I can't "rachel" feeling well, yet.

I understand what you are saying here Carla and relate on some level.

After being down so long and not having the angioedema outbreaks to the degree I used to have them makes me want to go out and conquer the world! But then I do too much and get overextended and wiped out by fatigue.

You do have to constantly define and redefine that balance as you proceed with treatment.

She said it was the scariest thing letting the coffee go in there.

It is scary when you aren't used to the enema itself, and then coffee of all things!

rpm, I have a couple of thoughts on the coffee enema.

I agree with what Carla says, it's an alternative treatment and anything alternative seems to be considered controversial.

Truth be told main stream medicine used to use the method of colon cleansing and the enema frequently in most hospitals. It was a common treatment, so they recognized its value back then.

I personally feel you should be under the care of a knowledgeable health care professional, like a naturopath or integrative Dr, to assess if your body is strong enough to administer them and if so to guide you along if any complications from detox should arise.

[CarlaB]

RPM, I used a lot of conventional meds along with alternative stuff to support detox and build my immune system.

I seemed to react favorable to every drug and every herb I've taken. I had no problems at all with detoxing, though I think everything I've done has helped me to be able to tolerate the high doses of meds I was on.

So, I'm probably not the one to ask about detox problems.

That being said, one year ago I was mostly bedridden myself. A proper diagnosis is the best thing you can work towards right now so that you know what you're treating. Right now all you can do is give your body what it needs .... sleep, rest, proper diet, exercise (as you can), etc.

Detoxing can be good, too, but if something makes you feel worse, definitely stop.

Have you tried apple cider vinegar? It helps with reflux and has a whole lot of health benefits. Something else for you to Google.

It will be good for you to see a Bioset practitioner. ART would be great for you, too. Two things I did not have available, but, like I said, I didn't have as many detox issues to deal with.

[aprilh]

RPM,

It was me who said detoxing without proper measures did make me worse. And what I meant by that is that I tried to detox without really knowing about the different steps you must take before and during detoxing. I started trying to chelate metals with cilantro BEFORE I got all my other measures in place. So, it loosened up the garbage just to recirculate it. I didn't even know about the benefits of activated charcoal, saunas, or e-coffee's then!

So, here was all these toxins going around and I didn't really know what to do about it for about 2 weeks. I posted on another forum and someone finally told me to try Activated Charcoal and detox baths. I did 2-3 detox baths per day and the charcoal and started feeling relief. That was VERY scary and I would not recommend this to anyone! I thought I might die for sure!

I do think that is what sent my liver over the edge. The toxin bucket was "full" at that point.

First and especially in your case its a good idea to make sure you detox organs are functioning properly. You can give your lymph and liver a jump start by dry skin brushing, drinking lemon water, rebounding, detox baths, sweating, ect. These type methods are not harmful and can give your body the jump start it needs to start working on moving what is clogging you right now. Drinking plenty of water for your kidneys. Like someone else said, plenty of rest, good food, ect. You can try some activated charcoal for help with absorption of the toxins that are already out.

You sound sort of like me that you got so sick after that radioactive die that you are now sensitive to everything. That's how I felt after the cilantro detox.

If this is the case you could try the lemon water in the morning on an empty stomach. This helps cleanse the liver and kidneys and encourages parastilis in the intestines. Also some activated charcoal might help until you can find a doc.

It is a good idea to get some testing done to know exactly what you are dealing with. I know you have been searching for an ART practioner and so I have I with no luck

Of course a good diet is key because you don't want to further exacerbate symptoms and reactions by eating things that are hard on the immune system such as sugar, dairy, and gluten (IMO).

I hope you find something out soon! Did you make the appointment with the Bioset practitioner? What do your parents think of all this?

April

[Rpm999]

Carla: i guess you were lucky! then again, i remember seeing that you had no fungal issues...i really suspect that i do, and who knows, that could be something that could really effect your detox organs...it's all a big puzzle piece...i've heard about the vinegar but haven't tried it, i'll have to give it a shot to cool off my insides a bit

April: "I posted on another forum and someone finally told me to try Activated Charcoal and detox baths. I did 2-3 detox baths per day and the charcoal and started feeling relief. That was VERY scary and I would not recommend this to anyone! I thought I might die for sure!"

the cilantro was very scary with what was going on you mean? just a little confused because you said that right after the charcoal and detox baths, but recommended them later on brain fog must be making me paranoid

thank you for all the advice though, it all sounds great and sensitive...glad to see you were in the same place, it's very confusing, huh? nothing worst than having such scary things happen and having no answer...that alone is enough to get you scared

with how sick i am now like i said, i've been taking nothing....when i saw the LLMD he threw some antibiotics that way, but i think it was a good move i didn't take them because he didn't get a chance to hear everything else that was going on...including how sensitive and backed up my system is, so i'd rather feel terrible than jump on something too quick

my parents are just shocked by it all, it's hard on everybody, especially with how sick my mom is but nothing i can do about it...before i started getting really sick, i was out constantly and it was all perfect and to say the least, it all just got flipped around in every way possible...it's hard being 17 and dealing with around 75 symptoms, it makes you feel like a zombie trapped in the house, but hey you live and you learn

it's just so much to juggle, but the thing that annoys me more than how sick i am is just the terrible doctors i've had...i always had a suspicion of deeper things, and they all called me crazy but now it's beyond obvious with how things are...amazing to see people in the same place...but i've always been very open minded so i'm trying to understand and get a wide open picture first, because i feel at this young age, everyone deserves to be out having a good time...so the easiest way to get better is the best obviously, but with complicated things like all of these, takes a lot of logic and hearing other peoples experiences...but it all ties in, it's as simple as when your immune breaks down, it all breaks down..and if that's hard to understand to doctors, then they're not worth dealing with

as far as ART, i think you'll have to ask around...unlike BioSET, there's no website because there isn't a company obviously, and alternative treatments are just not in the phonebook so....i've heard that it may be good to ask people at a health food store or anything natural like that, because asking hospitals or looking it up won't help out it seems....it's like other things, sometimes finding a reference to something alternative pops up in the least suspecting places...you can search for it and find nothing, yet on a random website find a contact...but there's been numbers i've found online that are no longer in service, so word of mouth is i guess what you need

[confusedks]

Kassandra, with your history, starting out on Mepron and Zith is pretty aggressive!!! Just a few weeks ago you were talking about whether you'd ever be able to take any abx!!

Yea, that's true! I always forget these things...thanks for the reminder!

RPM,

I understand about being so sick. It is really hard, and I'm 17 also. If my mom wasn't into alternative treatments, I'd be dead! My dad and stepmom still kinda doubt what I'm doing, because, well they're ignorant about these things. But at first, my mom refused to see the LLMD, but I told her I'd drive myself (it was a 6 hours drive) and that freaked her out! LOL! Now, she wants to go back to my old PCP and yell at him because he was so dismissive!

Seriously, she wants to make copies of every test my LLMD has had done, so my PCP can see "how to diagnose" a patient, lol. On the other hand, being so young, like we are, it makes a huge difference, because with the kind of joint pain I have, no dr. can tell you that's "normal with your age" because we are too young! So, that's the only good part about being so young.

I agree with you about talking to your Dr before you start anything. I am doing the same thing, I won't take anything without their permission.

Everyone,

We got a bill from a lab today that was $1,300!!! BUT, the insurance company is going to ay for $1,100!!!!! OMG! Can you believe it?! Also, we are waiting for a check from them for the Mepron! YAY!!!!!

[confusedks]

Does anyone know about the brand of Chlorella called Yaeyama? Whole Foods didn't have anything but it, so we bought it, but I don't know if it's good or not. Anyone know?

[miamia]

for those of you taking charcoal- when do you take it? Is there anything you should not take it near? So you tak eit everyday or just when certain symptoms appear?

[Green12]

Everyone,

We got a bill from a lab today that was $1,300!!! BUT, the insurance company is going to ay for $1,100!!!!! OMG! Can you believe it?! Also, we are waiting for a check from them for the Mepron! YAY!!!!!

Good news, YAY!

Does anyone know about the brand of Chlorella called Yaeyama? Whole Foods didn't have anything but it, so we bought it, but I don't know if it's good or not. Anyone know?

I don't even recognize the name of this brand

for those of you taking charcoal- when do you take it? Is there anything you should not take it near? So you tak eit everyday or just when certain symptoms appear?

Hi miamia, how are you doing?

You've been on my mind

I take it at night, make sure you take it 2 hours away from all your supplements and meds.

I am not taking it everyday, just when I have symptoms.

[Rachel--24]

for those of you taking charcoal- when do you take it? Is there anything you should not take it near? So you tak eit everyday or just when certain symptoms appear?

Hi Mia.

I only take it as needed. I used to take it pretty often but in the last few months I've only taken it once. I ended up not having any problems with taking Alinia for parasites...but I had the charcoal on stand-by....just in case. I took it once and as always...it helped.

I take it away from *everything*...including food.

The only bad thing about charcoal is that it binds with pretty much anything....its not a good idea to take it on a daily basis. There was a time when I was taking it everyday...even though I knew it wasnt recommended...but I notice more benefit when I'm taking it only when I really need it.

There have been times when I've reacted to it...so thats another reason I dont take it unless I need it. It always tests nicely for me....I dont want my body to stop liking it so I decided to stop racheling it.

and yes....I was really racheling my charcoal.

[aprilh]

...i've heard about the vinegar but haven't tried it, i'll have to give it a shot to cool off my insides a bit

April: "I posted on another forum and someone finally told me to try Activated Charcoal and detox baths. I did 2-3 detox baths per day and the charcoal and started feeling relief. That was VERY scary and I would not recommend this to anyone! I thought I might die for sure!"

the cilantro was very scary with what was going on you mean? just a little confused because you said that right after the charcoal and detox baths, but recommended them later on brain fog must be making me paranoid

Yes...I meant the detoxing made me feel bad. The detox baths made me feel better! OOPS

If you have fungal issues try the Braggs Organic Apple Cider Vinegar. It is good for fungus and it helps with the digestion issues.

[diamondheart]

Hi Everyone,

Nice to see you are all still here! I disappeared last fall as I was about to go into my first IVF. Long story short, it didn't work out, and I'm starting on my second one next week. I have this annoying habit now of sleeping for only 5 or 6 hours, and then I can't get back to sleep, so here I am...

An update on me: I stopped seeing my ART lady because I was overwhelmed with the cost and I just wasn't convinced I was seeing results. I went in for a dental cleaning last week, and who did I see behind the counter but my ART lady . She had just started working there and I guess she needed some supplemental income.

The one good thing about switching dentists and having all my amalgams removed last year is that I started flossing regularly. My dentist said that this was probably more important for getting pregnant than having my amalgams removed! There is a link between periodontal disease and getting sick/miscarriage. At least my gums are happier and I haven't gotten any colds that have been more than a runny nose.

I also had some toxicity testing done. We didn't bother with the heavy metals since I am going to try to get pregnant again and we don't really want to move those around right now. The toxicity testing showed I had high levels of parabens and styrenes. I write more about it on my new blog in my post Open Original Shared Link. Oh yeah, I started a blog, so you can read all about my baby making adventures over there:

Open Original Shared Link

Anyways, back to the parabens. So I thought, how could I have high parabens when I buy all this "high quality" shampoo and makeup (not that I wear much of it) . Come to find, my shampoo, conditioner, liquid soaps, and makeup all have parabens . I'm really mad at Aveda now! I'm in the process of converting all my stuff over to paraben free.

I also got a chlorine filter for my shower. I wish I could get a whole house filter! I had some blood testing done, and my chlorine was on the high end of the normal range. My acupuncturist told me that the chlorine vapors from the shower are more dangerous than drinking chlorinated water because the inhaled vapors go right to your bloodstream. It's so much more pleasant to have a chlorine free shower .

The intestines have been mostly great. The only problems I have are when I'm taking the hormones for my IVF cycle. My acu said that taking any hormones will affect your gut, as it affects the pH levels.

Good talking with you all! Donna, you look fabulous! Rachel, since starting a blog, I thought you should start one on your healing adventures! It's pretty easy to be a blogger, though I might pick a different program now, knowing what I know. Sorry to hear about your "unwelcome guests".

Claire

[CarlaB]

Hi Claire!

I went back to page 700, which is about where I posted my Western Blot results, to see what they were (easier than opening the file cabinet, LOL), and saw you there .... I was thinking it had been a long time since we had heard from you, and now, here you are!

We have a whole house filter ... it's wonderful. We used to have well water where we used to live and we couldn't stand the smell of the water here. We also have an RO on our drinking water.

[Green12]

Carla,

About how expensive was your whole house filter?

I have a filter for my drinking water, it might even be RO I'm not sure, and am looking into the shower filter.

A whole house filter might be the way to go.

[CarlaB]

Sorry, Julie, I don't know. It was about $250 to have the yearly filter change. We had a lot of work done when we moved in, so I don't remember how much that was.

[AndreaB]

Good to see you Claire!

Thanks for the update.

[mftnchn]

Nice to see you Claire and hear an update. That's too bad that ART was not helping, do you think it was the practitioner herself? I notice the Dr. E and Dr. Amy seem to be on high demand.

Sherry

[Rpm999]

rachel, i remember seeing a few pages back you said you had a list of essential tests to have done that some doctor gave you, can you post it if you see it? i know you said you posted it somewhere in here, but i don't think going through 672 pages is possible

[dlp252]

We got a bill from a lab today that was $1,300!!! BUT, the insurance company is going to ay for $1,100!!!!! OMG! Can you believe it?! Also, we are waiting for a check from them for the Mepron! YAY!!!!!

Glad the insurance is paying most of it!!!

Does anyone know about the brand of Chlorella called Yaeyama? Whole Foods didn't have anything but it, so we bought it, but I don't know if it's good or not. Anyone know?

I've heard of it, but I can't remember what I've heard.

for those of you taking charcoal- when do you take it? Is there anything you should not take it near? So you tak eit everyday or just when certain symptoms appear?

I take it in the middle of the night when I wake up.

Hi Everyone,

Nice to see you are all still here!

Hey Claire!!!! Good to see you back!!!

[confusedks]

We bought a mini trampoline today!!! YAY!!! I am going to go set it up and maybe try to "rebound." Is there anything special I need to know?

[Green12]

Rachel,

What kinds of things did you experience when you were reacting to the charcoal?

Glad to hear you did so well on the Alina (sp?)

I'm having a tough day, haven't been able to start with most of my supplements- still waiting on the majority of them to be shipped .

I have been taking the liver detox homeopathy protocol for the last 2 weeks and I have been experiencing a lot of irritability and weepiness off and on, maybe it's working

I've had angioedema breakouts the entire 2 weeks, really mild, just splotches all over that appear and then dissipate within the same day, quite a switch from what they used to be. Last night though my lip started to swell and it really took off, by the time I went to bed it was HUGE

My sauna is on the fritz too I have to have to order a new part and have it worked on.

One of those days where mole hills seem like mountains......

[mftnchn]

Carla, (and I think Mia?) on the Levaquin did either of you have nausea? I have been really struggling today and wonder if it is that.

Sherry