Friday, June 10, 2011

People Are No Longer Open-Minded

Over the past 4 years I have realized that people in the alternative health community are no longer open minded. Each forum has their "go-to" way of doing things and if you question or stray from it, you get yelled at, screamed at, banned or told to go away because you are being disruptive. Well excuse me for asking questions about the treatment or protocol that you sit and defend for hours a day. I thought maybe you had something to back up your claims or perhaps you yourself are feeling better? Oh no you aren't feeling better?....Hmm Well then why would you defend something that has not made YOU feel better? I truly cannot understand it and would like an explanation.

I don't care what it takes for me to get better. I don't care who I offend or who I piss off to get better. With this attitude and determination, one day I will be better and YOU WON'T BE because you are stuck listening to some stupid theory that has been dis-proven time and time again. Yes I am looking at you Dr. Cutler frequent dose chelation followers; I am looking at you Natural Hormone Adrenal yahoo group followers; I am looking at you Stop the thyroid madness followers; I am looking at you Rich methylation protocol followers. All of you are keeping people sick by only allowing others to discuss your protocols and if anyone questions something, you immediately shut them down. If someone doesn't respond to a treatment in the way you think they should well they did it wrong. They didn't follow it right. They didn't take enough supplements or the right supplements. They didn't raise their HC fast enough. They didn't raise their thyroid meds fast enough. They didn't jump through enough hoops. Clearly they didn't stand on their right foot, with their hand in the air, then count to 47, then do a perfect backflip and catch a dove flying through the air. I'm only partly joking here...This is how bad it has become with all of the excuses that are continuously made up to keep "their' treatment from looking bad.

Well I challenge any of you who defend all of this crud (I see it all over the place, so don't try to say you don't defend this crap) to really think for a second... Are you really better being on all of these hormones or after years of doing FDC? Are you able to live a normal life now without daily complaints? Some of the most active people on the forums GIVING ADVICE are the most sick. Hmmm I guess your own advice isn't really working out for you, so please don't try to tell me I need to do x,y,z for the 10th time. When I explain that I've already done it and it did not work, they never want to hear it and continue to say I didn't do it right.  /sigh Ok, sure whatever you want to think to feel better about yourself.

At this point, I think that's what all of these forums are really about. They are not to get better, they are there to bitch, complain, moan and feel good while swimming in a sea of other sick, dying fish. Well we are all sick, so really what prize have we won?

After all of these years, I am so sick of these forums, yahoo groups and other people who think they know everything. We don't! Humans do not know everything there is to know about the body. It is much more complicated than any of these forums made it out to be. Adrenals cause all fatigue, hypothyroid causes all weight gain and if your ferritin isn't some magical number, that's why you can't take thyroid meds! Yes clearly you are right because you just made it up out of thin air without any scientific evidence to even back up the THOUGHT of this being true.  If we really knew everything, then these forums would be dead. Everyone would be cured, feel good and leave. Yet there are the same names for years on there, with the same health problems, complaining about the same symptoms and still ask for and give advice. These are usually the ones who defend the forums/protocols the most.

Stop pretending we know everything and start letting people ask questions or question protocol. That is after all the only way we will get better. New information is a good thing because science is always learning new things. If you are sourcing Dr. Jefferies, did you actually read his book? My next rant will be on what I've learned from, Safe Uses of Cortisol. It absolutely DOES NOT SAY what these adrenal folk say it does and I need to call them out on it.

Yes this rant was spurred by something that occurred on a forum. If you peruse these forums, you know who I am on them. It's not hard to find birdlady. :) I'm the one always questioning everything including things I used to believe as truth. I hold myself to this as well. If I theorize something and it doesn't work, then I let you all know and move on. As you can see, I've taken down most references to Dr. Cutler's protocol. If you have followed me long enough, you will know that I used to think FDC was the only way to chelate. Now I'm not so sure and I don't think it helps people especially in the tiny doses that are now recommended. 1mg of DMSA, ALA and DMPS is laughable.


Barb said...

OMG! My thoughts exactly! Thanks for openly saying what I've been thinking: STTM is a Source of Terrible Thyroid Misinformation! People have been hurt by T3-only protocols and I was trying to explain it on a forum. Was basically told that I must not have followed the protocol correctly, in such a sweet, helpful tone that I looked like the bad guy. People need to read this:

Birdlady said...

Barb you made me literally laugh out loud and I almost spit my drink out on my monitor. lol Too cute! You should trademark that. :)

Yes if you did not get better you clearly did it wrong Barb. How dare you question anything!! Get back in line and be a good little T3 only, HC chugging forumgoer. lol I'm having too much fun tonight.

I have that website linked on my side page and was quite impressed with it. At least it questions things and links to real information/studies! :)

I did not do well on T3 only either. I'm pretty much against it. It just revs me up soo much and I was either feeling hypo or hyper. There was never a point where I felt good...blah!

Birdlady said...

Barb I totally just realized that is probably your site, right? I love it by the way! I've had it linked on my blog for a while now. :)

Barb said...

Thanks Birdlady. It was the only way I could figure to put the truth out there. There can't moderate my website!

Birdlady said...

Hey Barb, did you know I got kicked off the adrenal yahoo group a few days ago? Interestingly I made this post a few days beforehand, but now I am so glad I did.

HypoHealthyGirl said...

Hello sorry to hear you have had such a bad experience with websites, the one I use daily pretty much saved my life supported me through getting diagnosed and lots more, I take Armour and Levo, its sad that people have bad experiences, it must depend on the site as I've had nothing but good from mine, I'm healthy and happy now after 3 awful years unwell, studying nutrition also as I've come to realise what a huge difference a brilliant diet can make. Anyway just thought id say that :)

Birdlady said...

I am very glad to hear you are doing much better. :) yay!!

There's an important lesson to be learned though from all of this. What works for 1 person may not work for everyone, so you cannot assume that and promote one idea or theory. For me heavy metals seems to be at the forefront of my problems, but maybe someone doesn't have that wrong with them at all.

I don't claim to have all of the answers and it's impossible for anyone to know everything.

As long as people keep an open mind is what's important. Being able to change what we feel is "truth" is the only way we can really ever get better. :)

I'm not directing this at you Hypohealthygirl, but just throwing those ideas out there in general. You should make a blog and let people know what you did to get healthy. It's important for people to write about their own journey so maybe another person will be able to connect the dots and move on with their life too!

LLBelle said...

A couple years ago I spent alot of time on those groups. It helped me a tiny bit with my misery but I wasn't making big strides. I went to the NP in Seattle that Culter recommends. At the time I felt like I was dying and was bedridden 21 hours out of the day. Almost two years later and I am now 40% better and continue to improve. Now I am out of bed all day & doing things most of the day. 40% is a pretty big improvement considering I have had health problems for over 20 yrs & I am often told that I have a difficult case to treat. The first thing that the NP did was put me on 25mg of DMPS every 8 hours for a week on & then a week off. I started seeing improvements after each round. It took me a long time before I could add in ALA. She is open minded. She has suggested diets that were not in the AI book & did other things not in the book. It has taken a lot more than hormonal treatment & mercury chelation for me to improve. The NP is always looking at new things to try to help me get better and never makes me feel like I am doing something wrong like the yahoo groups do. I think that when people are sick they want to put their faith in something so that they have hope. If they admit something didn't work then they lose hope in getting better instead of just changing course. I personally have put my faith in Christ and not in any one protocol or person. The Bible says, "You will know the truth, and the truth will set you free". A commentary puts it this way, "Truth does not come to us all at once. It gradually accumulates in those who ask, seek, and knock for it, then use it in their own lives to glorify God. We do not always easily find it. Sometimes truth emerges only after a long and confusing search that is constantly impeded by conflicting information. Nevertheless, we must persevere". I think it is great that you contiually seek out the truth, question things and don't give up.

Birdlady said...

"I think that when people are sick they want to put their faith in something so that they have hope. If they admit something didn't work then they lose hope in getting better instead of just changing course."


Wow what an amazing comment. Thank you so much for sharing this. I really could not agree with you more and I do think faith plays a role in this for me as well. The last 2 years have been extremely difficult time for me emotionally and I think it was God that pulled me through it. There were days I literally wanted to die, which is so not like me... I don't think I ever made any posts about this on my blog. It was simply too dark to even talk about!

I am really finding it interesting that DMPS was an important part of your overall regaining of your health too. This seems to be a key with others who are doing better too with chelation. I have found that once I started taking DMPS, I began to feel tiny improvements here and there. Now after 5 rounds, I know something is most certainly better and I'm not making it up in my head. haha I have been second guessing myself for weeks now.

What else have you done besides chelation and hormones if you don't mind me asking? I assume you had gut issues?

Once again thank you so much for commenting. It really made me smile. :)

LLBelle said...

I have felt the same way at times. I don’t think anyone who hasn’t been through this can understand the level of suffering that we go through.

I don't have POTS. I have DI, fibromyalgia and a bunch of other conditions. I have delayed sleep phase syndrome that has been difficult to treat. I do have gut issues. What has helped is kind of long but below are the main things other hormones and chelation.

I got a CPAP machine for Upper Airway Resistance Syndrome (UARS). That gave me more energy during the day. I sleep sounder and less hours. I started going to sleep a few hours earlier. I don't have sleep apnea and I don't snore. It is often a diagnosis of exclusion. I had to find a sleep Dr that trained at Stanford U to get the diagnosis and treatment. The other Dr’s adamant that was not a problem. They were wrong! I also take melatonin.

I did some of the humaworm cleanses. They made me worse at first. The colon cleanse helped me get up earlier, gave me more energy during the day and I regained more of my old personality. After getting a flu shot a few years ago my personality became flat which is so not like me. The die off symptoms on the parasite cleanse were brutal but I powered through it. When I finished I had a decrease in my worst pains and I stopped overeating. I didn't notice much on the lung cleanse but I am coughing a little less. I haven't done the kidney and liver cleanse but I plan on doing them later in the fall. I want to do more colon cleansing first since I had such great results with it. I will probably try either the colonix or oxypowder one next. I also got the generic version of the essiac tea and I think that has helped me regain some energy.

I have been gluten free for a long time. My NP suggested a low oxalate diet. I have been on it for two weeks. I felt much worse the first ten days. Then I started waking up at 7am which is about 4-5 hrs earlier than I normally do. The DI symptoms were worse on low oxalate at first but now they are a little better. It makes me wonder if the frequent urination is more than just a pituitary problem. The DI has improved with chelation but is usually worse on rounds especially when I take ALA. I take desmopressin tablets. I can't tolerate heat unless I take them.

I did the metametrix Gi effects test. It did not show any parasites but I am pretty sure that I have some parasites based off the cleanse I did. I'm going to continue doing a parasite cleanse once every few months. The test did show that I have elevated levels of mycoplasma. I tried anti-biotics for a few months with not much improvement. I was concerned that the antibiotics would make my leaky gut worse and harm my liver more. I also had photosensitivity problems on it. I switched to raintree myco. The first day on it I broke out with welts on my right side. I stopped taking it. My NP is not sure if it was an allergic reaction or a liver problem since it was on my right side. I'm going to retry it when my liver is better. So, I am back to doing castor oil packs over my liver. I did them year ago for a few days. It got rid of a horrific three month migraine I had within a few days. I just started the Specific Carbohydrate Diet probiotic yogurt yesterday to see if that will help.

I bought a prayer book at the end of last year called, "Prayer Strategy Resource Book" by Ruth Shinness. I started praying the prayers for healing, benefits, victory over the enemy & deliverance solutions. I started seeing more progress after that and good things started happening my personal life. I'm sure you know what severe health issues does to ones personal life.