Omg...i Might Be On To Something

[Rachel--24]

I think the problem with the conventional antibiotic treatment is that while it may kill most of the bacteria it doesn't get them all, remember stealth bacteria are stealthy and it leaves people weakened. The bacteria, while knocked back for a while, will return but they may not return to the extent of causing illness for some years and then the illness that appears can seem entirely unrelated.

This is PRECISELY what the BioSET lady was telling me last night.

She said that they have never been able to prove that Lyme can be completely erradicated from the body....evidence shows it will survive. Like you said....its one heck of a stealthy bug! Its stealthiness and ability to "hide" from our immune systems will keep it from being completely killed off.

She said after I regain my health and am living my life....symptom free....it can come back. I had brought up the subject...asking her if it will come back later on everytime I get stressed out or something.

She said no...it wont come back after a break-up or stresses of this nature....unless the stress was chronic...which would weaken my immunity. She said if I was in a car accident (or other traumatic event) or if I were to catch a pnuemonia (sp?)...something like this where my immune system was knocked down...The Lyme can come back.

She said we ALL have bugs inside us....some are worse than others and some are very opportunistic. Lyme is a bad bug...that is highly opportunistic. When we are weak....it will take this opportunity to grow and to thrive....that is its mission.

She said this is why people with AIDS die....because they have no immune system to protect them. Eventually something is gonna take them down. She said for me....Lyme is not fatal....it will just rob me of every joy in life...but will not kill me. For those with AIDS....Lyme and candida are both deadly and they can kill.

[HawkFire]

Not having the strenght to read through nearly 10,000 posts, can you tell me what test you used to diagnose the lyme? I believe I have a lyme issue. My tests came back negative. I think it was missed.

[CarlaB]

Not having the strenght to read through nearly 10,000 posts, can you tell me what test you used to diagnose the lyme? I believe I have a lyme issue. My tests came back negative. I think it was missed.

Oh, no, we NEVER go back!! Igenex, you can find them on the internet. I ordered the test kit and am going to take it to my doctor. I don't know how the others did it, but they used Igenex, too.

[HawkFire]

Thank you very much. I will order the kit today. I did not use Igenix initially.

[rinne]

That Energy Wellness machine cracks me up...I can just see you hooking up to it and vibrating wildly.

Are those things expensive?? I'm gonna ask my Dr. what he knows about them.

My friend said it cost $3,500.00 and to please take good care of it. I've heard there is a range of prices and that price doesn't always indicate the best quality. I know they talk about them on the Lyme Boards.

I am cracking up Rachel, it is really just a mild buzz but now I have this image of myself dressed in lime green tights and a cape with a bull's eye on it flying out behind me, I'm standing at the controls of my space ship which is glowing neon lime green, of course, I am holding the aluminum rods and using them to navigate my way through unknown galaxies. I am having too much fun, did I mention the space ship looks like a tick.

Not having the strenght to read through nearly 10,000 posts, can you tell me what test you used to diagnose the lyme? I believe I have a lyme issue. My tests came back negative. I think it was missed.

Igenex in Palo Alto, link:Open Original Shared Link

There are details to having the test like when it should be done and such, if you are going to go ahead with it please post any questions you have, someone will be sure to help. If you are interested in sharing your story we are always glad to meet new people.

[dlp252]

Not having the strenght to read through nearly 10,000 posts, can you tell me what test you used to diagnose the lyme? I believe I have a lyme issue. My tests came back negative. I think it was missed.

Just wanted to say hello and welcome to our little piece of the world.

[AndreaB]

Thank you very much. I will order the kit today. I did not use Igenix initially.

Welcome Hawkfire. Feel free to drop in anytime you want. I see you question was answered.....just wanted to welcome you to the thread.

[CarlaB]

Hawkfire, I answered your question about moving in the real world, if you'd like to move in the virtual world, you'd like it here, we call it Rachelville!

[AndreaB]

I am cracking up Rachel, it is really just a mild buzz but now I have this image of myself dressed in lime green tights and a cape with a bull's eye on it flying out behind me, I'm standing at the controls of my space ship which is glowing neon lime green, of course, I am holding the aluminum rods and using them to navigate my way through unknown galaxies. I am having too much fun, did I mention the space ship looks like a tick.

[DingoGirl]

I am cracking up Rachel, it is really just a mild buzz but now I have this image of myself dressed in lime green tights and a cape with a bull's eye on it flying out behind me, I'm standing at the controls of my space ship which is glowing neon lime green, of course, I am holding the aluminum rods and using them to navigate my way through unknown galaxies. I am having too much fun, did I mention the space ship looks like a tick.

shaped like a TICK

Rinne I would definitely say you are having out-of-body experiences.....

Welcome Hawkfire....I think you've come to the right place. We're a bit loony in here but everyone is always quite helpful, too.

[HawkFire]

Thank you all for the warm welcome. I am going to look up Bloomington, Indiana right now thanks to a suggestion by Carla.

[Green12]

Exactly Beverly....so while all these people are "accepting" their Fibromyalgia diagnosis....the "REAL" cause of their illness is left untreated....so nothing will improve EVER. They will only mask their symptoms with pain killers and other drugs. Its sad because the potential for recovery is there....only its not getting recognized.

Methadone is now one of the drugs they are "treating" fibro, or chronic pain, with

I think a Fibro diagnosis consists of having a certain number of "tender" spots. I think there are 18 spots and if you have 11 of them you get diagnosed with Fibro. Basically they push on the spots to see if they are tender and cause pain. I used to have almost all of the tender spots but with the diet changes and avoidance of chemicals I dont have many at all anymore. I have alot of Fibro. info in my TMJ book so I'll have to go back and refresh my memory about this.

That's how I was diagnosed, it's been some years so I don't know if things have changed since then. Basically they check all the designated points for "lumps", or calcium deposits. If you have a certain amount, or all, then you get the diagnosis.

Welcome Hawkfire, hope you got the info you are after

[rinne]

This is PRECISELY what the BioSET lady was telling me last night.

She said that they have never been able to prove that Lyme can be completely erradicated from the body....evidence shows it will survive. Like you said....its one heck of a stealthy bug! Its stealthiness and ability to "hide" from our immune systems will keep it from being completely killed off.

I have decided to view Lyme as a shimmering thread (a misty neon lime shade naturally) that is woven into the larger tapestry of my life. I am different now, I know that I am fragile, I know that I need help, I am softening in ways I never knew I could and my true heart is glad though my body is in pain. I am grateful that I have had the circumstances and the smarts, you know I think I am to come to a diagnosis at this point. When I was in Calgary, the evening of the day that Dr.Hoffman gave me my diagnosis, I felt an ease wash through me and I knew I would be fine. Perhaps that is where all the emoticons are coming from, I feel like I am getting my life back and it is a new life and not one that I would have said yes to but when it gets right down to it to quote Leonard Cohen: "and even though it all went wrong, I'll stand before the lord of song with nothing on my tongue but Hallelujah!"

[Daxin]

Welcome Hawkfire, and the advice you got about either Rachelville thread is NEVER go back. We will have to send out the dingos to find you.

Hello all. I have been lurking and struggling to keep up to all the new scientificness.

I am beginning to see that there is more to any of this than I relalized back when I got my celiac dx.

I hope we all find the answers we seek.

[Mtndog]

I have always struggled with "C", since birth my mom tells me, but since getting sick it was so much worse- I would go two weeks or more without passing anything. I was advised to do enemas and then colonics (sorry too much information , but it is all a part of all of this) and afterwards I would feel so much better, I really felt it helped with the toxicity levels, but it became a problem. I completely lost all ability to have bms on my own and it further screwed with my digestion, I couldn't eat or digest anything raw. It took me two years to retrain my body and digestive muscles to have bms on my own, with different therapies, and now I can eat and digest raw foods- but I have higher levels of toxicity. So it's kind of a darned if I do, darned if I don't situation

This is exactly how I feel. I just had an Er doc who I saw for my hernia give me Enulose (spelling?) because I hadn't gone to the bathroom in 10 days! I was so bloated and C'ed I thought I was going to DIE! And when I get C it makes everything feel so much worse. I see my celiac GI next week so I'm going to talk to her aboout this. It's hideous!

Nope, mosquitos and flies of some sort also carry Lyme.

Laura, glad to see you, have a wonderful time being pampered.

WHAT???????????????????????????????

You're not kidding are you? Because that weekend camping and hiking in Bar harbor we were assaulted BADLY by flies (black flies I think) while hiking and I assumed that the reason I was feeling so crappy was I got something from the flies. Holy Poop!

I have decided to view Lyme as a shimmering thread (a misty neon lime shade naturally) that is woven into the larger tapestry of my life. I am different now, I know that I am fragile, I know that I need help, I am softening in ways I never knew I could and my true heart is glad though my body is in pain. I am grateful that I have had the circumstances and the smarts, you know I think I am to come to a diagnosis at this point. When I was in Calgary, the evening of the day that Dr.Hoffman gave me my diagnosis, I felt an ease wash through me and I knew I would be fine. Perhaps that is where all the emoticons are coming from, I feel like I am getting my life back and it is a new life and not one that I would have said yes to but when it gets right down to it to quote Leonard Cohen: "and even though it all went wrong, I'll stand before the lord of song with nothing on my tongue but Hallelujah!"

DITTO! That's why I put that new Sting quote in my signature. 'zactly how I feel!

Hawkfire- Big happy WELCOME!!!!!!!!!!!!!!!!!!!!!!!!!!!

[rinne]

Nope, not kidding but don't ask me to find where I read it.

Has anybody looked up Klinghardt? Check him out at:

Open Original Shared Link

He also does Family Constellation Workshops and Dr.Hoffman in Calgary usually has him come once a year and do a workshop at there. I keep mentioning him because Hoffman uses a variation on the Klinghardt Protocol for Lyme and according to Hoffman he is one of the major Lyme doctors in the world of alternative medicine.

He has a good face.

[DingoGirl]

He has a good face.

yeah, and all his teeth, I might go out with him if he asked me.

[rinne]

And what a lucky man he would be.

From his website:

In the last decade the majority of outcome-oriented physicians observed a major shift: we realized that it was neither the lack of vitamins or growth hormone that made our patients ill. We discovered that toxicity and chronic infections were most often at the core of the client’s suffering. We watched the discussion, which infection may be the primary one: mycoplasma, stealth viruses, HHV-6, trichomonas, Chlamydia pneumoniae, leptospirosis, mutated strep, or what else?

The new kid on the block is Borrelia burgdorferi (Bb) and some of us have looked at it for a long time as possibly being the bug that opens the door for all the other infections to enter the system. Lyme disease has become a buzzword in the alternative medical field. Since none of the recommended treatments are specific to either one of the microbes, we can never assume that we really know what we treated once a patient has recovered.

[Rachel--24]

Check this out! A documentary about Lyme.

I havent got to see the trailer cuz I have to download quicktime first. Somebody let me know if its good. I just found this right now...I dont know if this has been released yet or not but I really wanna see it!

Open Original Shared Link

[Rachel--24]

Welcome Hawkfire.

I got diagnosed from Igenix lab. The Dr. who believed my symptoms could be Lyme Disease only uses Igenix for testing. The other labs are pretty unreliable. I just got diagnosed a few weeks ago....I had asked for Lyme tests a couple years back but noone would listen and I was refused testing. They told me I couldnt have it....that my symptoms were "all in my head"....so I suffered alot longer than necessary.

[DingoGirl]

oh my gawd, I just watched the trailer for that film. I am in shock....kind of speechless. You all had better watch it......

What I don't understand is, is Lyme the CAUSE of conditions like MS, ALS, and other neuro conditions....or do those conditions not even exist, and they are just cases of advanced Lyme?

The whole thing is unbelievably scary and unbelievably frustrating......

Word needs to get out. I'm going to forward that film link to everyone I know......

[rinne]

Like a friend says, "don't mess around with Lyme, Lyme doesn't play fair". One woman went to bed feeling fine and woke up paralyzed, a good friend of my sister's went to bed feeling fine and woke up blind, she was diagnosed with MS. The clip makes it very apparent that Lyme can have devastating effects on people's lives and the treatment they have, we have, received can make you despair but we must not despair, we must be the Lunatic Lyme Ladies Laughing Luncheon Club and swear never to abandon the Rachelville Rules which have yet to be written but we have started.

[Rachel--24]

Ok...so at my first treatment last week the Bioset lady was de-sensitizing the Methionine pathway. One of the key detoxification pathways. She de-sensitized the components that use methionine and L-methionine to improve detoxification.

So this week it was the Sulfur Pathway that she worked on.

Sulfur Pathway:

If you have a problem with this, it means that you are either immunologically sensitive to sulfur itself or sulfur plus its metabolites....meaning components in the sulfur pathway that are used by the body. For example, sulfur is taken into the body in the form of food. Foods high in sulfur are egg yolks, garlic, onion, eggplant, and lamb. In small quantities you probably dont notice any symptoms. However, in larger quantities or if eaten frequentlyyou might notice that you dont quite feel as well when you eat these foods. You either feel tired after eating them, or you could have digestive upsets, heartburn, bloating or even diarreah. In some cases, patients have skin rashes, or find they are sensitive to sulfur drugs like Septra given for bladder infections common in women.

Sulfur is very important for the liver...to enable it to detoxify. When your body is sensitive to sulfur itself or the forms of sulfur that the body breaks it down into, your liver is unable to use it to bind toxins. Like empty seats on a conveyor belt, you cannot build a working car when a certain percentage of workers are not working on the conveyor belt. The severity of this problem will vary, as will the holes in the sulfur metabolic pathway. We have found by de-sensitizing the body to those sulfur metabolites that it has become sensitized to, we can improve the body's tolerance and usage of sulfur and thereby drastically improve the body's efficiency at detoxification and change food intolerances caused by sulfur sensitivities.

Sooo...it says that after the de-sensitization treatment most people can immediately begin to add sulfur foods into their diet. The lady told me that she wants me to be eating eggs and garlic...she doesnt want me to start yet though.

She said my toxicity is so high that she doesnt want me to add the sulfur foods in until my toxicity level is under 7. She will test my toxicity next week. I'm gonna start going twice a week so I'm going Tues. and Thurs. next week.

So she tested me for my sensitivity to all the sulfur metabolites. There were a bunch...they are all in glass vials. Its the same thing I did for testing the metabolites of the methionine pathway last week. So all these "holes" in the pathway that I've become sensitized to are what the treatment focuses on. All the vials that I respond negatively to are set aside and these are the ones that she de-sensitizes.

I dont know what most of the vials consist of because they are labeled with stuff I dont understand. Some that I did recognize were Sulfate and then the minerals and salts. I didnt react to table salt or any salt except for sea salt. I thought that was funny since thats what I switched to because its suppossed to be healthy.

I'm telling you...my body just does NOT like all the "healthy" stuff!

I asked her if I would ever be able to just go to Togo's and order a sandwich or if I'll ever have a beer again.

She said she hopes so...most of her patients are able to do this within a year...so she believes I'll be fine. She said that there are people with Lyme who have let their problem go for soooo long that they simply cant fully recover...their immune systems are too run down and cant muster up the strength required to get well....its much harder for these people and the treatment is more extensive. She says this is usually people who are twice my age who have suffered for decades w/out getting proper treatment.

I asked if these people just dont ever recover??? She said that they struggle and its taking them ALOT longer than most of her patients.

I told her I've been like this for 4 years now....will I be ok?? She said I'll be fine...She said 4 years isnt so long and even though I have alot of issues...I have youth on my side....and most importantly I've discovered the problem. I could actually be alot worse than what I am. She said my immune system is still strong and I'll recover but that the Lyme will always be "kicking back"....waiting for another chance.

She said that what I'm doing now....everything I'm doing right now will determine how well I live for the next 30 or so years of my life. Basically....if I do nothing....I can continue down this path I've been on for the past 4 years. Fortunately I've been given the power to change this course I'm on. The correct diagnosis gave me the power to regain my health.

She said that the Lyme has taken over....it CONTROLS me...it is in charge...it has the POWER and its dragging me down so that I no longer particpate in life the way I should be.

She said I now have the power to reverse that...so that I will be in CHARGE... and I will be in CONTROL of how well my body functions for the rest of my life.

How empowering is this????

She said the Lyme wont control me anymore.

Right now I've just begun the struggle to take my body back from the stupid Lyme.

oh my gawd, I just watched the trailer for that film. I am in shock....kind of speechless. You all had better watch it......

I'm not able to watch the trailer.

My mom doesnt want me downloading anything cuz she is paranoid (doesnt know much about computers) and thinks something might "break" if I do anything "out of the norm" (logging onto Celiac.com). I will have to wait till I get home and on my own computer.

What does the trailer show??? How scary is it??

From what I read my understanding is that the film is about people living with Lyme and about the failures of the medical system to diagnose and treat this growing epedemic. I got the impression it has alot to do with how we (the people with Lyme) are treated....from the Dr.'s to the insurance companies....with Lyme being largely ignored and undiagnosed.

This is something that I've had to deal with. I can relate to this 100%. I can *be* one of the people in that film. If I see it....I will probably cry because its probably very close to what I've experienced these last 4 years. I will feel all that pain, frusteration and anger all over again. I still wanna see it though.

[rinne]

Right now I've just begun the struggle to take my body back from the stupid Lyme.

I found this very funny, (It evokes an image of a very strong willed small child, could that have been so?) and I am quite sure you will do it.

I see it much that way and as I have said before, it was the day I fell off my bike that I knew something bigger than I could deal with had taken charge of my body. I knew then that I needed serious help, not just the herbalist with the two year degree or the gastro or the chiropractor or the acupuncteriist who just thought I had a poor digestion. I knew I needed to really find out what was wrong. I feel that it was from that moment on the answers started coming to me, really from the moment I was willing to be honest with myself about how much trouble I was in, not long after my friend sent me the salt/c protocol and once I started that I started to fight for myself again. I think that is what is so devasting is that you lose your will to fight and then your fight to hope and that is what I saw etched on many of their faces. I will not go there and now that I have a diagnosis no-one can try and send me there.

It's like I told Celia, it is all vanity, the lines must go up.

[Rachel--24]

What I don't understand is, is Lyme the CAUSE of conditions like MS, ALS, and other neuro conditions....or do those conditions not even exist, and they are just cases of advanced Lyme?

I dont know....I definately think that most Fibro and CFS cases are actually Lyme. I dont think those are real conditions. I think maybe MS and ALS are real but that Lyme is actually being mistaken for these diseases....people are being diagnosed with the wrong disease when it comes to Lyme because Lyme is the "Great Imitator" of all other diseases. OR....all of these conditions are actually manifestations of advanced Lyme Disease. Lyme affects people differently and maybe these other diseases are actually......like you said....just cases of advanced Lyme. Its a very scary thought...all of these diseases actually being caused by Lyme. I guess we may never know the answer...BUT...when people with these diseases are tested for Lyme in studies....the MAJORITY are found to have Lyme present in their blood.

I'm going on a search now to find that data...

Some scientificness....

The Complexities Of Lyme Disease

Open Original Shared Link

OK.....this is what I was looking for.

In 1995 Dr. Mattman obtained positive cultures for Bb from 43 of 47 persons with chronic illness. Only 1 of 23 control patients had a positive Bb culture. Dr. Mattman has subsequently recovered Bb spirochetes from 8 out of 8 cases of Parkinson’s Disease, 41 cases of multiple sclerosis, 21 cases of amyotrophic lateral sclerosis and all tested cases of Alzheimer’s Disease. The complete recovery of several patients with terminal amyotrophic lateral sclerosis after appropriate therapy shows the great importance of establishing the diagnosis of Lyme Disease.

Dr. Joanne Whitaker relates that nearly every patient with Parkinson’s Disease (PD). has tested positive for Bb. Dr. Louis Romero reports that 3 patients with PD are 99 % better after TAO-free cat’s claw (Uncaria tomentosa) therapy. When Dr. Mattman cultured 25 patients with fibromyalgia all subjects had positive cultures for the CWD Bb. which causes LD.

Andrea....I seeee you!

I found this very funny, (It evokes an image of a very strong willed small child, could that have been so?)

My mom describes me as a very easy going well-behaved child who did what she was told....something changed drastically as I neared my teenage years. My mom wonders whatever happened to that sweet little girl. I dont know cuz I dont remember that girl...the girl I've known all these years has the hardest time following ANY rules...she just makes her own along the way.