Omg...i Might Be On To Something

[AndreaB]

After reading all the good things it says I want to "rachel it". I can't though, I am on the increase drop by drop protocol.

You'll be up in drops before you know it. Do you get to add a drop a day?

Rinne

I'm shocked. Just read you excerpt above. Why is this being stonewalled so much? It seems some doctors are in the know about it.

[rinne]

Nope, a drop every two or three days until I get to a maximum dose of 34 drops, divided into two doses, a day. Once I am up to the full dose then I cycle on and off it, 12 1/2 days on and 1 1/2 days off, for 2-3 months. The time off the Samento is important because during that time the Borrelia transform back into the spirochetal form which is most vulnerable to Samento.

[AndreaB]

Does the Samento kill the spirochetal? Make it so it can't multiply? What?

I'm a very curious person......can you tell?

[rinne]

That's what I understand Andrea, in one study they did on 28 late stage Lyme patients, (did I already talk about this? EEK sometimes I mean to post something and then I can't recall if I did or not and I will not go back ) the 14 who received the Samento showed improvements and at the end of the study 85% had no traces of Lyme in their blood.

[AndreaB]

That's what I understand Andrea, in one study they did on 28 late stage Lyme patients, (did I already talk about this? EEK sometimes I mean to post something and then I can't recall if I did or not and I will not go back , the 14 who received the Samento showed improvements and at the end of the study 85% had no traces of Lyme in their blood.

I don't recall reading that before.

That's some kind of improvement! I'm impressed.

[Rachel--24]

Of course you have to trust your body Rachel I just wonder about maple syrup as a substitute. I know sugar came up as a big NO for me but maple syrup is okay, not that I should be indulging too much.

I've tried maple syrup, agave, stevia, honey.....all the healthy alternatives...and I react to all of them. I avoided regular sugar for over a year but then when I tried it...I didnt really react as badly. I really have no use for sugar so I dont eat it but of course it is in the ice cream. I tried to make my own home-made and sugar-free ice cream but I reacted to it.

I'm not sure but maple syrup is VERY high in sugars.....much higher than whats in my ice cream. I know its supossed to be healthier but I react...could be something else like sulfites though...not really sure??

I cant take Samento right now. My Dr. said I will get VERY sick if he were to put me on it...I believe him about that. I cant even take a supplement of any kind right now and if the Samento starts killing Lyme I'm gonna have major toxins being released that I cant get rid of.

[nikki-uk]

He said if the whole medical community were to acknowledge Lyme disease for what it truelly is...the insurance companies would not be able to cope

It makes my heart sink to think that Lyme is yet another disease like celiac disease that is being ignored because of politics and $.

To be honest (being in the UK) I didn't know much about Lyme - other than I'm sure I read once that the model Christie Brinkley has it (is that right?) - did she get better?

This thread has been a total eye opener

Laura - wishing you the strength to get through your diet challenge.

Any news on Evie??

[Rachel--24]

I must have heard you wrong yesterday.....I thought you said you ate brocolli.... I think it was one of the times one of the kids came into my room.

Andrea....more likely that I was just talking a mile a minute about a million different things and confusing the heck out of you.

Now I'm curious whether this doctor is trying to keep you from getting your hopes way up there or if he thinks you won't get much better. I think you will. Positivity is a part of the battle. You are a fighter, that's another big part. It would be nice if he could be a bit positive anyway.

I think his nature is that he is just a very serious guy...doesnt really crack a smile....but then again I'm not there for fun and laughs.

I think he feels bad that this has happened to me and I think he is angry that this is getting ignored by the majority of Dr.'s. I think he knows this is gonna be no walk in the park for me....that its gonna be a huge battle and he makes it clear. Dave says its better that hes telling me like it is and not just "blowing smoke"....but then again a tiny puff of smoke here and there wouldnt be so bad.

When we talked about the documentary and whats going on with Lyme Disease and the medical community he asked how I felt about all of it. I told him it made me angry. He said "Good...you should be angry about it." He said I need to be tough and not give up this fight.

I dont know how many people he sees like me but I get the feeling he's upset when he finds the answer to be Lyme and its been ignored all this time. I think he did not want the answer to be Lyme because of how complex and difficult to treat it is.....especially if they are now putting restrictions on the Dr.'s as far as the antibiotics. Its got to be frusterating for him.

[Rachel--24]

I stayed home from work today and yesterday.

I know I've totally blown my excellent record but in a way I feel kind of entitled to take a couple days to relax after all thats been happening. I think that time of the month is approaching and I'm getting super tired (always happens). Yesterday I was so tired and achey and have so much on my mind I just took the day off. Now today I felt the same. Alot of it is anxiety I'm having...its worst at night during my sleep. I guess at night I'm more scared about everything going on. During the day I'm mostly ok but at night I wake up scared with alot of thoughts running through my head.

I dont feel too sick and I should be at work but I feel tired from all the anxiety. I feel mentally drained. I feel so guilty for not going to work though.

The Dr. said people who are chemically sensitive are very anxious people. The toxicity affects the brain and neurotransmitters and other stuff I dont really understand.

He said I can be up one minute and down the next.....total mood swings, irritability, anxiety, anger, crying etc. He said everything is "heightened" in a person who's chemically sensitive. This I DO understand.

I think I would be feeling anxious now even if I didnt have chemical sensitivities. I think its just alot for me to absorb right now so the anxiety is normal....except probably "heightened" because of all the toxins and such.

This whole thing is such a huge bummer. I'm looking forward to my BioSET appt. later today. I feel better after I see her because I get "good" vibes and a more positive outlook. I will have to ask her questions that I know she'll give me positive responses to...something like "Do you think I can recover?"

Shes gonna wonder why I ask that at every appt.

I need to erase the fears.

Right now I have anxiety about my mom waking up and seeing I didnt go to work again.

Maybe I need to get in bed and act real sick like I did when I was a kid.

[jerseyangel]

Hi Rachel

I think you did the right thing by staying home for a couple days. After everything recently, you need some time to yourself to sort of decompress.

I'm glad that you can relax some before your appointment later--I'll bet you feel even better after it!

I've been reading along, trying to understand everything you've found out. It is a lot--you probably underestimate how draining all of this research is--no need to feel guilty at all for knowing when you just need a break. Very sensible, if you ask me

[dlp252]

Donna, how are you doing?

Not bad...still a bit light-headed here and there...ask me on Thursday though, lol...tomorrow I have my second quandrant done on the amalgam removal.

[CarlaB]

Rachel, don't feel anxiety about taking the day off!!! That would defeat the purpose. Just tell your mom you are taking the day off because you're mentally tired and you wanted to get caught up on paying your bills ... that way there's a positive in it for her!!

Rinne, thank you for looking at Igenex again. I'll get whatever I need to get, I don't care what it costs ... I'm at that point. It would actually answer a lot of questions if I had it. I've been sick cyclically for over 25 years ... four times bad enough that I couldn't function for a period of several months ... I'm kind of hoping it's positive so I at least have the answer. My dad was telling me yesterday that if this wasn't it, he wants me to go to the Mayo Clinic for however long it takes to figure out what's wrong and that he'd go up there with me as long as I need to be there. That worked years ago for my grandmother so he has a lot of faith in them. Whatever I have is chronic ... it's not going to be pretty whatever it is ... I'd just like to know. If it were "just" gluten, I think I'd feel better by now ... next month is one year.

Rachel, mine are totally gone, too .... totally flat .... when my husband tells Morgan I used to be built like her, she doesn't believe me! She's almost 20 pounds heavier than I am (at one point I weighed what she does) ... I'm sure if I gained 20 pounds, they'd come back somewhat ... something about breastfeeding though -- it makes you flat when you're done. Andrea, something for you to look forward to!

[rinne]

Now who told the joke about anal glaucoma, Susan?

All I can say is I am so glad your ass isn't going into work Rachel. You need some time to absorb all this.

I feel like I have run a marathon. It took everything I had to get me to the point of diagnosis and now I would like to curl up, go to sleep and have someone else take care of it. That is not going to happen I know. I can't even imagine how exhausted your body must be given how ill you have been, please enjoy the day and rest.

Do you ever take baths with epsom salts? They help to detox the body. I can't remember if we ever talked about it.

[Rachel--24]

Carla,

I'm rooting for you as far as getting an answer.

The test my Dr. ordered from Igenix was the Western Blot IgG and Western Blot IgM. The price was reasonable.

Now that I've tested positive I have to get the full panel for all infections...its about 3 times what the first test cost.

I'm not so "flat" anymore....I'm back to normal size for me but dont know what would happen if I gave up the ice cream.

Now who told the joke about anal glaucoma, Susan?

All I can say is I am so glad your ass isn't going into work Rachel. You need some time to absorb all this.

Do you ever take baths with epsom salts? They help to detox the body. I can't remember if we ever talked about it.

I used to...I've done it many times but I never really noticed anything positive come out of it. It was just a regular bath with salt.

I've been thinking of trying it again though. Does the Epsom salts have magnesium though? The test showed I'm not tolerating magnesium so would that mean the salts would be bad???

Whatever....I didnt get sick when I took the baths before so I just may as well try them again.

OK...taking my work clothes off...getting back into PJ's and going back to sleep.

G'nite all!!

[dlp252]

Donna, Wow....hectic day....I was exhausted just reading about it. HN called me tonight....they wanna see me again....I guess I have test results there they never went over with me. I told her I got diagnosed with Lyme Disease.

Ha, yes, while I was waiting for my PT/Chiro appointment yesterday I heard Nancy that that a whole bunch of labs had come in so they were calling people.

I asked if her treatments worked.....what was his opinion?? He said as far as treating chemical sensitivities she is the best in this country....basically one of a kind. Well....I dont think I can ask for more than that now can I??

Yay, making ME feel better too, lol.

I asked him about mercury...how much of a role does it play if any??

He said that once a person has Lyme they become toxic. He said Lyme spits out toxins all over the body and depending on how well a person detoxes the burden can be worse for some than for others. A person with Lyme will accumulate heavy metals because they get backed up....they dont get detoxed.....they build up in the body and eventually the heavy metals reach toxic levels as well. Also the co-infections....parasites such as Babesia create their own toxins. In my case everything has backed up inside me....nothing toxic gets out very easily at all. The rise in toxicity results in chemical sensitivities.

He said mercury and Lyme are both intacellular and mainly cause the same kind of disruptions of cells and other stuff that is undetectable in any kind of test....even though they are causing plenty of damage. He said mercury and Lyme are basically buddies...they are connected at the hip. He said for a person dealing with both it gets extremely difficult. Lyme is harder to get rid of when there is mercury and mercury is harder to get rid of when there is Lyme.

Again...not very promising.

He said someone who has mercury toxicity is more sucseptible to Lyme....meaning the Lyme will have a greater advantage than it would in someone who doesnt have mercury toxicity. Also a person with Lyme is more suscepible to mercury toxicity because of the body being in a toxic state....the mercury and other heavy metals wont be going anywhere.

Again I say !!!

Even worse....he said that just last week they have made it law...that no Dr. shall treat a Lyme patient for more than 3 weeks with antibiotics.

This cannot be good for the future of those who have Lyme.

I know that this is something that has been going on for quite some time now....the controversy of Lyme Disease. I've noticed that on the Lyme boards they DO NOT post the names of their Dr.'s....to protect them...because these Dr.'s are treating Lyme Disease as a chronic illness and can suffer the scrutiny of the medical profession if they are "found out".

How scary is that??

Unreal!!! Unbelievable really.

[dlp252]

So all this talk about dates made me have a dream last night about someone I haven't seen in over 21 years! We went on a date, lol. I was walking along and I bumped into him on the street, and then we were on a date. I think there was a cabin involved in my dream, lol.

[rinne]

Rachel, you are right, Epson Salts do contain magnesium, you could use just plain salt. Also I read something about baking soda and detoxing but I didn't pay much attention to it because I was using the Epsom Salts. I have never noticed any significant difference but figure everything I do that leans in the detox direction is helpful. I hope you are reading this after you have had a great sleep.

Carla, I hear what you are saying about an answer, I am a little concerned though that if the tests come back negative you may still not have your answer and it may still be Lyme. The links I posted talk about this problem.

[CarlaB]

Carla, I hear what you are saying about an answer, I am a little concerned though that if the tests come back negative you may still not have your answer and it may still be Lyme. The links I posted talk about this problem.

Me, too. How do you figure it out then? I know I had the ticks, I know I have the symptoms ... I just never saw the rash ... all the ticks were on my scalp and I have lots of hair!!

[rinne]

Me, too. How do you figure it out then? I know I had the ticks, I know I have the symptoms ... I just never saw the rash ... all the ticks were on my scalp and I have lots of hair!!

I have a clinical diagnosis by a LLMD and a treatment protocol based on that. I still do not have my results from IgeneX, should be this week, and it will be interesting to see what they show. I'm feeling like an idiot now, I don't want to make you doubt your decision to go ahead with the testing because if I was you that is what I would be doing too. I am just remembering that my friend with Lyme cautioned me not to get too fixated on the test results because Lyme is a clinical diagnosis. I understand that now but I still want the tests to show the Lyme.

[weathertopmama]

Hello, can I come in?

I'm Amy, a celiac with horrific msg sensitivities. I still haven't had time to read this whole thread and I don't know if everybody is still talking about msg, but I've been directed here to ask my questions!

My boys all have celiac disease, too, but none of them have shown the violent reaction to msg. Still Dh and I want them to be msg-free if possible. We're horrified that the FDA sees no harm in spraying all our produce with MSG. Shocked. We think it is very scary that our little boys are the first generation to grow up with nearly 100% of their food treated with MSG. We don't want to be part of this experiment

Anyway the question: I get the impression that cornstarch and tapioca starch are extremely bad for people with MSG sensitivities. They contain natural msg (?) . My boys don't have any bad reactions to Bob's Red Mill tapioca or cornstarch, and I use these in Bette Hagman's mix recipes all the time. Is this MSG naturally occuring and 'safe' for my boys? Or is MSG used in the production or added to cornstarch, thus making them unsafe.

I'm figuring out the other stuff, but I'm very confused about the cornstarch and tapioca. "I" can avoid it for myself but I don't want to remove it from the boys' diet unless I need to.

Thanks for any help! If I live long enough, I may find time to read the rest of this thread and learn something LOL

Amy

[CarlaB]

I have a clinical diagnosis by a LLMD and a treatment protocol based on that. I still do not have my results from IgeneX, should be this week, and it will be interesting to see what they show. I'm feeling like an idiot now, I don't want to make you doubt your decision to go ahead with the testing because if I was you that is what I would be doing too. I am just remembering that my friend with Lyme cautioned me not to get too fixated on the test results because Lyme is a clinical diagnosis. I understand that now but I still want the tests to show the Lyme.

Don't feel like an idiot! I KNEW that Lyme is a clinical diagnosis and ordered the tests anyway. I don't know that they could clinically diagnose me though since I didn't have the rash?? I wonder. I haven't even talked with my doctor about it yet and don't know if she is educated on Lyme at all. It would be nice if the test results were clear ... but so far no test result except for dietary response and Enterolab has been clear on anything I've been tested for. Apparently I'm a very healthy individual.

Hello, can I come in?

I'm Amy, a celiac with horrific msg sensitivities. I still haven't had time to read this whole thread and I don't know if everybody is still talking about msg, but I've been directed here to ask my questions!

My boys all have celiac disease, too, but none of them have shown the violent reaction to msg. Still Dh and I want them to be msg-free if possible. We're horrified that the FDA sees no harm in spraying all our produce with MSG. Shocked. We think it is very scary that our little boys are the first generation to grow up with nearly 100% of their food treated with MSG. We don't want to be part of this experiment

Anyway the question: I get the impression that cornstarch and tapioca starch are extremely bad for people with MSG sensitivities. They contain natural msg (?) . My boys don't have any bad reactions to Bob's Red Mill tapioca or cornstarch, and I use these in Bette Hagman's mix recipes all the time. Is this MSG naturally occuring and 'safe' for my boys? Or is MSG used in the production or added to cornstarch, thus making them unsafe.

I'm figuring out the other stuff, but I'm very confused about the cornstarch and tapioca. "I" can avoid it for myself but I don't want to remove it from the boys' diet unless I need to.

Thanks for any help! If I live long enough, I may find time to read the rest of this thread and learn something LOL

Amy

Welcome, Amy! I wasn't around much back when MSG was being discussed, but I'm sure someone will be able to answer your questions! Just jump right in ... we discuss a lot of things around here!!

BTW, I used to home school, too ... for 10 years!!

[AndreaB]

Andrea, something for you to look forward to!

Me, too. How do you figure it out then? I know I had the ticks, I know I have the symptoms ... I just never saw the rash ... all the ticks were on my scalp and I have lots of hair!!

Carla, With what you've said about your childhood and ticks, I would be surprised if you didn't have lyme. Also, how would you see a rash on your scalp unless you were actively looking for one. That would be very time consuming.

Rachel,

I'm so glad you took some time off. Don't feel bad. You need to do what you need for you and your health. You've been going through a lot. I was going to ask if you were home but it sounds like your at your mom's. We are all here for you. This is one of those pillows Rinne was talking about (I think). We are so used to taking care of everything else that we neglect our own well being. I'm excited about your appointment today right along with you. If you want to talk, let me know and I'll call you.

Rinne,

You've been through the wringer in getting diagnosed to. I think it is natural to want to curl up. Give yourself the time to rest, but don't forget your meds. We are all here for you too.

Why do I suspect Carla's wringer is just ahead.

Laura, Hope things are going ok with you so far.

Evie, Don't know if you are in the hospital, but trusting that you are getting the treatment you need to get rid of the c-diff.

[CarlaB]

Why do I suspect Carla's wringer is just ahead.

No, it's been here for about a year ....

[dlp252]

Hello, can I come in?

....

If I live long enough, I may find time to read the rest of this thread and learn something LOL

Amy

Hi Amy, welcome! We eventually come back around to every topic since it seems that so many things factor into our health with this group, lol. You are a brave woman to attempt to go back in this thread, lol. We don't venture back very often, lol. We do have lovely dingo dogs who will come looking for you if you go back and don't return!

I don't have a specific problem with MSG, but try to aviod obvious sources and overload. I know that early on Rachel and several of the girls did some research, which I bet they've got book marked or perhaps can answer your questions a little better than I can.

[AndreaB]

Hi Amy!

Good to see you.

Rachel is pretty much the expert on msg.

As Carla said, we talk about everything over here.

I don't thing the natural msg type stuff would be bad. I believe the problem for most people stems from the isolated/man made msg. I believe that Rachel has a reaction to all, so that may be the case for you too? Your boys should be fine with the naturally occuring though.

We can't afford organic fruits/veggies so are dealing with it. We do buy the best meat we can though through an online company. We don't have an msg sensitivity but don't like all the bad stuff it does to the body. You never know where your limit is until it hits.