Omg...i Might Be On To Something

[CarlaB]

FiddleFaddle-thanks for the links and ideas about those musical pieces! That was sweet of you to think of me. I played the flute from 4th-12th grade and always used to play at church (often, the Christmas Eve services). One of my favorites to play was hymn-type/classically inspired songs. Once my health issues calm down, I'd actually like to get back to playing now that I just moved into a HOUSE and am not in an apartment anymore.

I play flute, too. The braces are making it hard though ... I picked it up two years ago after 23 years of not playing. You should start playing again, it's fun and relaxing! Also, I always feel energized after playing ... must be because I'm breathing better! I'd encourage you to pick it up again before you get healthy again!

[Rachel--24]

This is just a quick drive-by...

I'm going to bed now but just wanted to say hello and goodnight to everyone.

I've been trying to keep up with whats going on with everyone but was spending some time on some of my "old" message boards....letting everyone know what happened to me and about my diagnosis.

Now I'm back but have so much to review....will probably just have to jump in tomorrow. It may be too late to go "back"....I might get lost.

Anyways I luv you guys...be back tomorrow.

G'nite

[rinne]

I've been trying to keep up with whats going on with everyone but was spending some time on some of my "old" message boards....letting everyone know what happened to me and about my diagnosis.

Me too, it feels good to be able to say I know what is wrong with me.

I am curious to know if you have heard about Rifing machines, a new friend lent me one and I've been reading the manual but haven't started yet.

I've been reading along, I am always glad to hear how everyone is doing. I've been feeling kind of tired this week.

[Rachel--24]

I am curious to know if you have heard about Rifing machines, a new friend lent me one and I've been reading the manual but haven't started yet.

Rinne, you're probably worn out from all the events/excitement of the past couple weeks.

I dont know what a rifing machine is?? I never heard of it until I read your last post about it....what does it do?

Have you seen this article?

Open Original Shared Link

What do you think? What is Samento...is it Cats Claw?

My Dr. had mentioned Cats Claw as a possible form of treatment for me but he was just throwing things out there.....making the point that there are alternatives to antibiotics. I know I cant take antibiotics...they would more than likely make me worse....especially with the Candida. The Bioset lady said this as well.

Do you plan on taking antibiotics or sticking with the salt/vit C?

[rinne]

It looks like Samento is a form of Cat's Claw, Hoffman sent me home with it and with Noni and instructions to continue with the salt/c and that he would let me know when to start taking them. I am impatient but the protocol is to do the salt and Vitamin c first.

Open Original Shared Link

If you do a search there is more information on the Klinghardt protocols for Lyme and Mercury detox and autism... and I don't what else, I think Constellation therapy.

I don't seem to be able to make a link work but search for Rife Machines, Raymond Royal Rife, Rife and Lyme, also a book: When Antibiotics Fail: Lyme Disease and Rife Machines, with Critical Evaluation of Leading Alternative Therapies (Paperback) .

There are various names for these machines, the one that was lent me is called Energy Wellness, they work by creating frequencies that kill the bacteria. I hadn't been really drawn to Rifing, I am more interested in herbs, but since it landed in my lap I am thinking I should pay more attention to it.

I am not wanting to take antibiotics, I was given tetracycline a lot in my early twenties for my skin and I think it caused me all sorts of problems, that was thirty years ago and no-one talked about yogurt or pro-biotics then. It also looks like they are only effective for about 70% of people and even then I question whether the Lyme won't come back later. I think a life change must be made to deal with this, the folks who are doing the salt/c even when they are feeling better are staying on a maintenance dose and after reading the article you posted I think everyone should consider the risk they may be at.

Yes, I think I am just tired this week, it took a lot of energy to get a diagnosis - two years of pain and misery and then suddenly an answer, a confirmation, and now I feel I can rest, I am sleeping more.

[CarlaB]

I think both of you are right, Rinne and Rachel, in not taking tetracycline antibiotics. I was on doxycycline for 21 days four years ago and that's when my symptoms got so much worse with my gluten intolerance. I have had symptoms prior to that, so it wasn't a trigger ... in fact, three other times since I was 19 I've been so ill from it I could hardly get out of bed and couldn't hold a job ... but the antibiotics were the most recent start of the downfall of my health. In my case, I couldn't have lived without them, so they were a necessary evil, but if you can avoid them, I certainly would.

[miamia]

I think both of you are right, Rinne and Rachel, in not taking tetracycline antibiotics. I was on doxycycline for 21 days four years ago and that's when my symptoms got so much worse with my gluten intolerance. I have had symptoms prior to that, so it wasn't a trigger ... in fact, three other times since I was 19 I've been so ill from it I could hardly get out of bed and couldn't hold a job ... but the antibiotics were the most recent start of the downfall of my health. In my case, I couldn't have lived without them, so they were a necessary evil, but if you can avoid them, I certainly would.

carla- I am with you unless you absolutley have to I would avoid antibiotics. Rachel you are right- there really bad if you have candida and leaky gut

Miamia

[dlp252]

x?

Thanks!

I can have:

Meat: chicken, turkey, lamb, fish (but I'll be limiting this myself cuz of the mercury), unprocessed cold cuts/sausage (like from Whole Foods...found a turkey sausage that only has turkey as an ingredient)

All Vegetables and beans (except soy and corn)

All fruit except citrus and strawberries

Cold/expeller pressed unreined oils, ghee, some seeds, nut butters and nuts (no peanut), salt.

Beverages: water, caffeine-free herbal teas (no citrus), white tea.

Sweeteners: stevia or fruit juice.

I am AVOIDING: beef, pork, egs, shellfish, tofu/soy, creamed veggies, citrus, strawberries, dried fruit, margarine, shortening, butter, refined oils, peanuts, all vinegar (including stuff made with it), coffee, decaf coffee, tea, citrus, alcohol, soda pop, corn, all dairy and gluten obviously, including amaranth and quinoa, SUGAR, CHOCOLATE, ARTIFICIAL SWEETENERS, lol.

Made it through day 1 just fine and day 2 going well so far.

Donna, I hope you don't have any more ill effects from your outing to Hometoen Buffet. Good luck with th elimination diet. I am right there with you trying to turn over a new leaf today and start on some variance of an elimination diet. Whoopy! (<--filled with sarcasm)

Yah, I've known I needed to do this for a while, I just couldn't make myself do it...I have a purpose now, lol...I have it in writing...from a doctor...telling me I have to, lol. For me, it's always easier if I have it in writing...a list of things I can and can't eat. I think I need that structure.

Donna,

No red meat. Whatever are you going to eat for 10 days? Hope this week goes quickly for you.

Me too, lol...I'm already going through beef withdrawal...I stared at the frozen beef patties in my freezer yesterday.

Donna - oh nooooooooooo!!! Not the buffet! Pray this passes (no pun intended) quickly...

Yup, appears to be passing quickly...pun included, lol.

x.

Wow, so sorry... auxigro...stupid auxigro...may have been what's on your grapes.

I don't know how many of you go to church, but there is something really comforting to me about singing hymns that I have grown up with (my WHOLE family is Lutheran, we even have a bunch of pastors in the bunch, all from the midwest---which is Lutheran territory compared to the East)...and today was a good "hymn day". I am just babbling at this point, but so rarely do I have moments where I just forget everything, even for a little while, that I had to post and share.

I do, and actually sing in the choir and in a smaller women's group...I'm having to sit our Christmas musical out though...the performance is on the weekend I come back from vacation and so won't be able to go to most of the heavy duty practices...and, in fact have been too tired and dizzy to even stay for our normal Thursday practices. The choir director is very nice though and has been trying to work around my health!

and he just got his 2nd degree balck belt in Tae Kwon Do yesterday (can you tell I'm bursting with pride?).

Congratulations!!!

[CarlaB]

Rinne and Rachel, I've been reading all along of your journey to your Lyme diagnosis, and not once did I think, "Oh, that's me, I have that!" However, I have this mystery d right now that is not letting up at all. It's not like sick d when glutened, though much of the time it's after I eat or drink, plus first thing in the morning and sometimes in the middle of the night. I'm also very fatigued. I can also relate to Rachel's perfume problem ... if I'm near someone with perfume on it makes me nauseous. I just told my teenage son the other day that if he's going to be around me he needs to skip the after-shave.

I have never been able to take too much vitamin C because it makes my face break out and gives me d, but I've been starting on it as part of my doc's supplement program. I've also never really liked salt, but for adrenal support I've been using it and putting it into my water.

I've thought all along that this d is from detoxing. I've had countless ticks as a child (and have been sick since I was a child with extreme fatigue -- I always got accused of being lazy -- it just took a lot of effort to do anything), and my step-father used to remove them with heat (which I've read is a good way to get the poisons released into your system). Now I'm starting to wonder if all this d could be caused by the vitamin C and salt. My skin is also getting very itchy, but I don't know if that means anything at all.

I know I'm just rambling, but I'm wondering if I should be tested. Is there a way to tell with the vitamin C and salt? I'd rather do something like that before I walk into the doctor's office and ask for the test. I'm not normally one to jump on the "I've got that" bandwagon", but I'm either going through a major detox, or I'm not to the bottom of my health troubles yet.

[miamia]

Thanks!

I can have:

Meat: chicken, turkey, lamb, fish (but I'll be limiting this myself cuz of the mercury), unprocessed cold cuts/sausage (like from Whole Foods...found a turkey sausage that only has turkey as an ingredient)

All Vegetables and beans (except soy and corn)

All fruit except citrus and strawberries

Cold/expeller pressed unreined oils, ghee, some seeds, nut butters and nuts (no peanut), salt.

Beverages: water, caffeine-free herbal teas (no citrus), white tea.

Sweeteners: stevia or fruit juice.

I am AVOIDING: beef, pork, egs, shellfish, tofu/soy, creamed veggies, citrus, strawberries, dried fruit, margarine, shortening, butter, refined oils, peanuts, all vinegar (including stuff made with it), coffee, decaf coffee, tea, citrus, alcohol, soda pop, corn, all dairy and gluten obviously, including amaranth and quinoa, SUGAR, CHOCOLATE, ARTIFICIAL SWEETENERS, lol.

Made it through day 1 just fine and day 2 going well so far.

Yah, I've known I needed to do this for a while, I just couldn't make myself do it...I have a purpose now, lol...I have it in writing...from a doctor...telling me I have to, lol. For me, it's always easier if I have it in writing...a list of things I can and can't eat. I think I need that structure.

Me too, lol...I'm already going through beef withdrawal...I stared at the frozen beef patties in my freezer yesterday.

Yup, appears to be passing quickly...pun included, lol.

Wow, so sorry... auxigro...stupid auxigro...may have been what's on your grapes.

I do, and actually sing in the choir and in a smaller women's group...I'm having to sit our Christmas musical out though...the performance is on the weekend I come back from vacation and so won't be able to go to most of the heavy duty practices...and, in fact have been too tired and dizzy to even stay for our normal Thursday practices. The choir director is very nice though and has been trying to work around my health!

Congratulations!!!

Donna-

if you can have lamb- have you ever tried a lamb burger its tnot the same as your beef patties but they are pretty good.

Miamia

[CarlaB]

Donna-

if you can have lamb- have you ever tried a lamb burger its tnot the same as your beef patties but they are pretty good.

Miamia

I buy that at Wild Oats, and LOVE IT!!!!

[happygirl]

x

[CarlaB]

Carla...have you ever thought about eos disorders? they can have multiple (or single) food intolerances and/or allergies AND environmental allergens.

I'm reading all of what you guys post about ... I don't usually think of whether I have something that is being talked about because you can convince yourself that your really sicker than you are with some major stuff doing that , but I am keeping an open mind and learning through all of you. So, keep posting!

[Green12]

Good morning all!!

I have been meaning to comment on so many things that everyone has been going through, but keep forgetting . I am a lousy participant in this thread!

Rinne, I forgot to say something about the rifing you posted about the other day. I have never heard of it either, "rolfing" comes to mind but it is probably something completely different. All of this has been so emotionally and physically draining, take good care of yourself and rest up

Carla, maybe you are to something with the d and lyme, maybe you are having a herx (or whatever it is called) phenomenon happening? After reading the links Rachel and rinne posted today however, what stands out to me is that the salt protocol kills all parasites, it de-oxygenizes them or something, so not saying it isn't lyme, but you might be clearing out any and all parasites. Just a thought.

Oh and thanks btw Rachel and rinne for the links, great scientificness.

Laura, so sorry you had a reaction to the grapes. I can't eat grapes at all, they kill me Very sweet of you to offer helping me on an elimination diet, I really appreciate it. I pretty much have to go back to my same small list of foods that are safe for me so there isn't much I can play around with or experiment with. Hope you are feeling better

Donna, glad you have your "structured" diet Good luck with it. I used to eat lamb patties as well, if I recall correctly they were pretty good.

Mia Mia, how are you doing?

Bev, I know there is something I want to say to you, must go back and find out what.....

[happygirl]

x

[rinne]

Rinne and Rachel, I've been reading all along of your journey to your Lyme diagnosis, and not once did I think, "Oh, that's me, I have that!" However, I have this mystery d right now that is not letting up at all. It's not like sick d when glutened, though much of the time it's after I eat or drink, plus first thing in the morning and sometimes in the middle of the night. I'm also very fatigued. I can also relate to Rachel's perfume problem ... if I'm near someone with perfume on it makes me nauseous. I just told my teenage son the other day that if he's going to be around me he needs to skip the after-shave.

I have never been able to take too much vitamin C because it makes my face break out and gives me d, but I've been starting on it as part of my doc's supplement program. I've also never really liked salt, but for adrenal support I've been using it and putting it into my water.

I've thought all along that this d is from detoxing. I've had countless ticks as a child (and have been sick since I was a child with extreme fatigue -- I always got accused of being lazy -- it just took a lot of effort to do anything), and my step-father used to remove them with heat (which I've read is a good way to get the poisons released into your system). Now I'm starting to wonder if all this d could be caused by the vitamin C and salt. My skin is also getting very itchy, but I don't know if that means anything at all.

I know I'm just rambling, but I'm wondering if I should be tested. Is there a way to tell with the vitamin C and salt? I'd rather do something like that before I walk into the doctor's office and ask for the test. I'm not normally one to jump on the "I've got that" bandwagon", but I'm either going through a major detox, or I'm not to the bottom of my health troubles yet.

I am wondering if the Salt/Vitamin C is causing you to herx which would be an indication of die off of the bacteria, D can be part of it. The skin itching also sounds like symptoms of herxing. That doesn't mean that it is Lyme for sure but for me the herxing that went with the salt/c was an indication. A friend with Lyme for the past 13 years and I spent five months on the phone chatting about how she was ill and how I was ill and it never occurred to either of us that I had Lyme. It manifests in so many different ways. I also never thought I had what Rachel had but then I didn't have her dental experience.

Now I know this will sound kind of out there but I think that we, those of us who are connecting in this thread are part of the Lyme Clan, as in there used to be a Bear or Eagle Clan but now we have Cancer or Lyme Clan.... and I think that means a lot of you have Lyme and just don't know it yet. Not to forget all the other potential clans as in the Celiac Clan. If you read the article that Rachel posted I think it says 1 in 15 people. I am seeing a picture of three distinct Lyme bodies: the pain body, the exhaustion body and the brain fogged body and then there are variations according to the the conditions that have tipped one into ill health such as mercury poisoning, stress, genetic vulnerabilities, etc.

I know you've heard, "get the right test" so you know that Igenex is the lab of choice for Lymies.

Carla you are already doing so many things that support healing, I think that if it turns out that you do have Lyme the treatment will fit seamlessly into what you are already doing.

[AndreaB]

Rinne,

Yes, I believe you are tired due to the events of the week in Calgary and getting a diagnosis. You have been getting so little sleep (in my eyes) that it would seem you are finally allowing yourself to get some much needed rest.

Rachel,

How have things been with you? When's your next appointment?

Carla,

It certainly wouldn't hurt for you to get tested for Lyme. Your new doctor would probably be willing to do that and use Igenix. Especially if you had tick bites when you were younger. We got a lot of flea bites moving into where we are, so even though they are a remoted possibility I'm going to be keeping that in the back of my mind.

Laura,

Keep posting about eos. I will also keep that in the back of my mind. I like learning things and can pass them on to others if the need arrives.

Miamia,

How have you been? When do you get the results from your tests last week.

Donna,

Yae!!! Keep it up. Glad it is easier to follow this since it is written down for you.

Julie,

You are not a lousy participant. Stop that talk!

[CarlaB]

Thank you all for your suggestions. One interesting tidbit -- Rinne mentioned tetracycline being only 70% effective against Lyme -- I was on doxcycline for 21 days about four years ago. I would bet that if it's what I do have that antibiotics would not be effective. It took me six months to get rid of the candida after that.

[happygirl]

x

[AndreaB]

I just went back and skimmed the article Rachel posted.

Now I'm really curious. Mitch's dad died of ALS about 20 years ago. We had read that excitotoxins could play a part, now I'm wondering about Lyme. Will have to talk to Mitch and his mom.

That's interesting that Lyme can spread among family members so easily. They also mentioned flea bites but I don't know how common that is. My family is on the tip of celiac (low enterolab numbers) and has developed more intolerances (then again maybe we've had them awhile and didn't know it). I'm still curious as to where Talitha's HSP came from; tied with celiac or not, or something else (I think Measles vaccine was linked). Just looked it up, insect bites have also been linked. Wonder if that would include fleas.

You gotta love this thread......thanks guys for reaching out to others. So much to learn.

[dlp252]

Donna-

if you can have lamb- have you ever tried a lamb burger its tnot the same as your beef patties but they are pretty good.

Miamia

Hi miamia! Yes, I have tried it, and actually tried to buy some ground lamb this week, but they didn't have it out yet and I didn't feel like waiting for them to get them from the other fridge. I bought some lamb chops instead, but am not going to eat them this week until after I do my stool test...have to be red meat free for 3 days before the test and while doing it.

Carla.....

xoxo,

Yep, if it weren't for people on this thread talking about the various issues and symptoms I don't know if I would have ever made a connection...not sure I've got the answer with the mercury, but I intend to figure it out, lol.

[CarlaB]

not sure I've got the answer with the mercury, but I intend to figure it out, lol.

If mercury is not the answer for you, I am quite sure it's still a contributor! I am very happy that I had my amalgams removed years ago -- some day you will say the same. I still had mercury toxicity show up in my tests!! But it wasn't as bad as the aluminum.

[dlp252]

Now I know this will sound kind of out there but I think that we, those of us who are connecting in this thread are part of the Lyme Clan, as in there used to be a Bear or Eagle Clan but now we have Cancer or Lyme Clan.... and I think that means a lot of you have Lyme and just don't know it yet. Not to forget all the other potential clans as in the Celiac Clan. If you read the article that Rachel posted I think it says 1 in 15 people. I am seeing a picture of three distinct Lyme bodies: the pain body, the exhaustion body and the brain fogged body and then there are variations according to the the conditions that have tipped one into ill health such as mercury poisoning, stress, genetic vulnerabilities, etc.

That's interesting...I'm not completely ruling out Lyme, just haven't been able to convince myself that it is even possible. I had such a brief exposure to even the possibility of it, but I do have a mouth full of mercury so if Lyme loves mercury, who knows.

[rinne]

Rinne,

Yes, I believe you are tired due to the events of the week in Calgary and getting a diagnosis. You have been getting so little sleep (in my eyes) that it would seem you are finally allowing yourself to get some much needed rest.

Thanks Mom, I am glad for your concern, I think you need more sleep too, seems to me I've seen you up late.

I've seen different antibiotics listed for treating Lyme but it seems like they all make people sick and sometimes people are on them for months and years and end up with Candida problems equal to the Lyme problems. I think we have to move past some kind of "kick *** cowboy mentality" when it comes to illness, actually when it comes to anything. I am a huge fan of the Dixie Chicks, who are loved in Canada by the way, enough said although I hear they have a movie coming out called Shut Up and Sing or something like that.

I am glad for everyone's voice on this thread and am baffled by the idea that certain criteria must apply to make one really part of it, Dingo Girl I am thinking of you. You and your fabulous wit have brought laughter to this thread and in doing so you helped to give Rachelville a heart. The thread is changing but the warmth and kindness have been laid down so firmly and so well, by you and others I will not name, that I feel confident that the support offered and received here will continue regardless of what form the thread takes.

Personally I think we all deserve a bit of a pat on the back for creating such an incredible place, and special thanks to Rachel for making it all happen.

I am realizing that the healing process for me includes choosing my life, as it is this very breath, with no regard for how it appears and that by utterly choosing it, it is at once completely mundane and beyond magical.

This is a serious drift, my oldest friend and I were 16 and 18 when we met. The first time we saw eachother we were dressed from head to toe IDENTICALLY , we were mirror images, down to the fact that we had each bleached our hair the year before and it had grown in the same length and it was the same color and we had each braided it into little tiny braids when it was wet so to have this EXPLOSIVE effect when unbraided and dry. We didn't talk that night.

She called me last night to tell me she has remembered seeing my Hoffman in Victoria about 7 years ago. Oh, and when I told her I had been wearing my pearls, I learned that she has been too.

How is it that we are all here together? How is it that we choose this? Clearly we are all strong women and we are determined to know the truth of our bodies, so whether or not everyone has Lyme here, everyone here has been touched by Lyme in some way. I was thinking we need Laughing Lyme Ladies Lunching, we could have really sharp lime green hats and bags and we could have fun and we could help people understand that we can use illness as a gateway to compassion for ourselves and for the world that so much needs it.

Love and Blessings

[AndreaB]

Thanks Mom, I am glad for your concern, I think you need more sleep too, seems to me I've seen you up late.

I'm working on it too Rinne. Now if Seth would just cooperate. He's been teething lately.......

I am glad for everyone's voice on this thread and am baffled by the idea that certain criteria must apply to make one really part of it, Dingo Girl I am thinking of you. You and your fabulous wit have brought laughter to this thread and in doing so you helped to give Rachelville a heart. The thread is changing but the warmth and kindness have been laid down so firmly and so well, by you and others I will not name, that I feel confident that the support offered and received here will continue regardless of what form the thread takes.

I agree. Everyone contributes and this thread is ever evolving depending on what we all are going through at the time.

Personally I think we all deserve a bit of a pat on the back for creating such an incredible place, and special thanks to Rachel for making it all happen.

I second that. Love fest time!

I was thinking we need Laughing Lyme Ladies Lunching, we could have really sharp lime green hats and bags and we could have fun and we could help people understand that we can use illness as a gateway to compassion for ourselves and for the world that so much needs it.

This lady is laughing. Good idea Rinne. Not laughing at you, like the title and description of the group idea.