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Omg...i Might Be On To Something

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted
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Anther thing I am thinking. I thought lyme was only a deer tick thing you could get on the east coast. Not on the west coast? Is it very much on the west coast as well? I was surprised to be tested for lymes to begin with.

Hawkfire...I havent read through all the posts yet so dont know if this has already been answered??

Lyme Disease is everywhere....except maybe Alaska. I am on the West Coast....in the Bay Area, CA and I was just diagnosed with Lyme last month. I think I got it in Tahoe back in 2000 but I didnt actually get sick until 2002.

Did you get ahold of Igenix?? It really does matter about where you get tested because the other labs dont seem to be reliable at all. Even Igenix isnt 100% but it is the best thats out there and it came back positive for me. I've read about so many people continuing to test negative through the other labs...even though they knew they had Lyme they couldnt get a positive test until they went through Igenix.

I already tested positive for Lyme but had to get another blooddraw today for a more complete panel from Igenix. The one you need right now would be the Western Blot IgG and the Western Blot IgM. That was what my Dr. ordered for me last month. Today he also drew blood for some type of virus test....I know for certain the test had epstein Barr on it because my Dr. wanted that tested. I think there were other viruses as well. So there is a test for the virus...I can find out the lab that test was going to if you want.

Are you in Ca?? I'm in the Bay Area....Igenix is right here....about 2 blocks from my Dr.'s office. My blood sample was going directly over there as soon as it got drawn. They said I could've went to Igenix to get the blood drawn but since they needed to do the other test they just did it all at once instead of sending me down the street. If you are in this area...you can just go there and they'll draw the blood....you will need a Dr. to actually "order" the testing though.

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Rachel--24 Collaborator
Rachel--24
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Rachel...just tell your doctor you FORGOT your dosage.... :lol: and then no worry of her finding out the chicanery you've been involved in. ;)

:lol::lol:

Thats exactly what I'm gonna do! I'm blaming it on the Lyme-fog. :ph34r:

Chinanery. :lol:

My eyes have improved since I started taking the salt/c and the "film on my eyes" is a good way of

describing it.

Yes....I HAVE that!! I have a freakin annoying film over my eyes...it sucks. Its not there all the time though...but my vision is blurry....mostly when I look far away. This has improved IMMENSELY from when all this started...my eyes were the most affected in the beginning. It was unbbelieveable pain...some of it was probably from Graves Disease although all the tests they ran did NOT show the typical eye innflammation that would be seen with Graves. I had a CT scan on my eyes and was visiting the opthamologist quite a bit. They did alot of probing on my eyes....it was NOT fun. My eyes were REALLY dry back then and they ended up putting plugs in to dry to keep them moist. It was unbelieveable what was going on with my eyes.

Did I already tell you guys how I could not even watch TV or drive....or go to the movies?? OMG...I was wearing sunglasses at night and sleeping with a bandana around my eyes. :blink: Back then everything I tried to read was blurry. Its not like that anymore but I still am blurry looking far away....sometimes worse than others....and then there is that "film" that comes and goes. <_<

I am going to get some Himalayan salt toute suite!

:lol:

<--------- this is what I found when I got home last night..... :lol::lol::lol: for a split second I thought, would it be so difficult to have THREE dogs? :huh::lol:

Soooo cute. He is adorable...doesnt look skinny and starving...he looks cute. :)

My blurring was a temporary thing, my glasses wouldn't help. I have to splash water on my face and blink my eyes a lot to get it to go away. It's like a film.

Yeah...thats what I HAVE!!

Oh....did I say that already. :ph34r:

But I was not satisfied that a reactive arthritis would come back again and again and aagain. It has been pain free in my body for a month. Now last night it began to creep back into my hands. i feel the pain beginging again. I dread it.

My pains come and go too....it seems to move around for me but usually coming back to the same areas. Sometimes one of my fingers will hurt...its always the same finger. Sometimes my hand and wrists are stiff. Occassionally my feet, hips and back.

The most bothersome is TMJ and neck and shoulder pain/stiffness. That pain does not ever go away but some days its not bad and other days REALLY bad. :(

happygirl Collaborator
happygirl
Posted

x

Mtndog Collaborator
Mtndog
Posted

I only have one minute to post but holy moly....Dingo Girl....that creature is cute! Ears are a bit big though. :P:P:P:P:P:P:P:P

rinne Apprentice
rinne
Posted

Open Original Shared Link

Laura, yes you did see Klinghardt mentioned on that site and the above link takes you to that site with information on muscle testing. Dr. Hoffman used this diagnostic techniqe on me.

I am so pleased that you are going to do this. :) I want to see you get well and you definitely do not need any more idiot doctors. :angry::ph34r::lol:

I talked to a woman tonight who has gone the antibiotic route, she said that after five months on antibiotics she had a brief period of time when she felt great but it didn't last long and then the doctor put her back on a different antibiotic. She has been seriously ill since 2001 when after a rash, (camping trip) then car accident she got very ill, they checked her out and decided her thymus needed to come out, removed it and since then she has had crushing fatigue and incredible pain. She was diagnosed about a year ago. It was a good talk though we have been taking different paths to deal with it we had a lot in common in how our symptoms developed although she has NO digestion issues. She is interested in my Lyme Ladies Lunching club. B) She is also interested in alternatives, she has a friend in Ottawa who has Lyme and has also taken the alternative route and is doing well.

I'm thinking that maybe my digestion issues have been a blessing, they have really helped me know how important an organic and unprocessed diet is. How does that song go? Something about the sunny side of life. :lol:

Rachel I am glad your eyes are better now.

How many of us with eye issues does that make? :(

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Ears are a bit big though. :P:P:P:P:P:P:P:P

Poor little Dingo...everyone is picking on his ears. :P

He is the cutest dingo ever! Yeah.....I always fall in love with the ones who have "defects". My dog has an extra dewclaw...6 toes....nobody wanted him. He turned out to be the greatest dog!! I will have to put him up here one of these days. His name is Bear. I've had him 13 years now. :D

DingoGirl Enthusiast
DingoGirl
Posted

I shed a tear when I dropped the little bat-dog at the SPCA. *sniff* If I had a bigger yard.....but he was a bit savage, kind of feral, had never been in a house or car but let me pick him up and also wanted to cuddle....oh he WAS a cutie. Appeared to have not been around humans much at all.....and he was....quite, um, quite attracted to me. :lol::lol::lol:

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Rachel--24 Collaborator
Rachel--24
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Happygirl Laura,

I'm glad you're going there. :)

Make sure whatever tests they run they use specialty labs....like Igenix for Lyme. The clinic I used to go to used the same lab for all kinds of testing but the tests werent really specialized for what they were testing. They tested for Lyme and Epstein Barr and all these things but it was all in one blood test. Not at all like the tests I'm having done now which are specific for these conditions.

From what I read I think they sound good....I cant wait to hear more. :)

I'm rooting for you. ;)

Appeared to have not been around humans much at all.....and he was....quite, um, quite attracted to me. :lol::lol::lol:

ROFLMAO

:lol::lol:

I'm playing the waiting game again. :(

Its not as stressful as waiting for the original Igenix tests to come back but still...I dont like having to wait. :ph34r:

I'm worried that none of the "bugs" will show up. I know I must have them and the electronic test showed 19 but I've read that alot of times the co-infections dont show up until after treatment has started....then they will show up in later tests.

Will have to wait and see.

I've also read that when people have had Lyme for a very long time they are more likely to test NEGATIVE for Lyme. This is because of the immune system not producing enough antibodies I believe. I'll have to go back and find where I read this. Basically the ones who are most sick with Lyme will show up negative because of the state of their immune system.

I'm gonna go find it.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

EDITED post

penguin Community Regular
penguin
Posted

Drive by!!!

Rachel - Lyme? Really? Are you feeling better?

Sorry, I don't have time to read 200 pages!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

If you read this magazine article you will see there is no mention of Lyme. Thats because this was written in 2000. The guy got his health back and was fine until 2004 and then everything came back. He started all his treatments all over again but didnt get better. Then in 2005 he went to the Bioset lady....found out about Lyme and ordered the Igenix tests. Now he knows that his ENTIRE illness was actually Lyme...all the way back in 1997 when he first got sick....it was because of Lyme. He recovered for 4 years but it came back. Now he is doing all the treatments for Lyme.

EDIT: ooops my posts got seperated. The magazine article was in my previous post.

I took off the link cuz I dont know about copyrights and stuff like that.

Drive by!!!

Rachel - Lyme? Really? Are you feeling better?

Sorry, I don't have time to read 200 pages!

Hi Chelse :)

Sorry about the Crohn's. :( Its good you know though and can do something about it.

Yeah....I have Lyme....it kind of sucks but...like you....its better I know whats going on now.

I havent started treatment for the Lyme yet. They're working on getting me detoxed so that I can handle the treatment without it killing me. Also, I'm still getting tested to find out what other infections I have with the Lyme...there are usually related infections that require seperate treatment. I just did the bloodwork for that today. I probably wont actually start treating Lyme until December....when they get a specific treatment plan for me and whatever "bugs" I have.

penguin Community Regular
penguin
Posted
Hi Chelse :)

Sorry about the Crohn's. :( Its good you know though and can do something about it.

Yeah....I have Lyme....it kind of sucks but...like you....its better I know whats going on now.

I havent started treatment for the Lyme yet. They're working on getting me detoxed so that I can handle the treatment without it killing me. Also, I'm still getting tested to find out what other infections I have with the Lyme...there are usually related infections that require seperate treatment. I just did the bloodwork for that today. I probably wont actually start treating Lyme until December....when they get a specific treatment plan for me and whatever "bugs" I have.

I hope they get it all figured out for you...so...um...can you eat dairy again? ;)

What kind of dietary restrictions are you dealing with now (sorry for being too lazy to read...)

rinne Apprentice
rinne
Posted
I shed a tear when I dropped the little bat-dog at the SPCA. *sniff* If I had a bigger yard.....but he was a bit savage, kind of feral, had never been in a house or car but let me pick him up and also wanted to cuddle....oh he WAS a cutie. Appeared to have not been around humans much at all.....and he was....quite, um, quite attracted to me. :lol::lol::lol:

I am not surprised by this, I am thinking you are a Dingo Magnet. :lol:

Rachel, I read the article. It is astonishing that he survived at all given the treatment he received, six tests for AIDS and numerous referrals for psychiatrists!!! Thanks for the link.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, I read the article. It is astonishing that he survived at all given the treatment he received, six tests for AIDS and numerous referrals for psychiatrists!!! Thanks for the link.

Yeah...I got the same treatment except only one AIDS test. Funny thing is that when I finally got to see the GI (first of 3) for Celiac....all I got from him was a lab slip for an AIDS test. :blink: From the GI....who I went to about CELIAC??? :unsure:

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

About the dry eyes and the film--I have this, too! And my eyes used to be supersuper sensitive, and teared up like mad at the slightest excuse. Except, I've noticed when I forget to put moisturizer around my eyes--then I DON'T have the film. Apparently, for me, the film is caused by the moisturizer getting in my eyes. But then when I don't use the moisturizer, then the skin AROUND my eyes is like dried-out shoes, and looks like my grandma's skin did when she was 90. :ph34r:

rinne Apprentice
rinne
Posted

Rachel, I really hope that you will let those doctors know the Rachelville law. :lol:

DingoGirl Enthusiast
DingoGirl
Posted
About the dry eyes and the film--I have this, too! And my eyes used to be supersuper sensitive, and teared up like mad at the slightest excuse. Except, I've noticed when I forget to put moisturizer around my eyes--then I DON'T have the film. Apparently, for me, the film is caused by the moisturizer getting in my eyes. But then when I don't use the moisturizer, then the skin AROUND my eyes is like dried-out shoes, and looks like my grandma's skin did when she was 90. :ph34r:

:lol::lol::lol: We just can't win, can we? :lol:

rinne Apprentice
rinne
Posted
About the dry eyes and the film--I have this, too! And my eyes used to be supersuper sensitive, and teared up like mad at the slightest excuse. Except, I've noticed when I forget to put moisturizer around my eyes--then I DON'T have the film. Apparently, for me, the film is caused by the moisturizer getting in my eyes. But then when I don't use the moisturizer, then the skin AROUND my eyes is like dried-out shoes, and looks like my grandma's skin did when she was 90. :ph34r:

Fiddle Faddle, you bring up a good point.

I don't use anything around my eyes, no creams and no mascara.

Okay eye issue list: Rachel, Carla, Donna and ....? Do you use cream around your eyes that could be causing this?

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I hope they get it all figured out for you...so...um...can you eat dairy again? ;)

What kind of dietary restrictions are you dealing with now (sorry for being too lazy to read...)

ummmm....lets see....I have to think really hard about this. :rolleyes:

Its kind of hard to rememeber all 5 foods I've been eating for the past 2 months. :P

This is my diet...Organic grass-fed beef, organic popcorn kernals, organic unsweetened applesauce or apples, organic potatoes (sometimes I get Auxigro'd from these <_< ) and GET THIS....ice cream.

Yup...I eat ice cream....a pint a day....sometimes more. :ph34r:

Its only Stonyfeild organic (2 flavors) that I seem to be tolerating just fine.

I'm going to treatments to de-sensitize all my reactions to stuff. When I can eat more of a variety of foods I will probably ditch the ice cream...or at least I wont be eating it everyday like I've been doing. Right now I just dont have any other foods that dont bother me.

Okay eye issue list: Rachel, Carla, Donna and ....? Do you use cream around your eyes that could be causing this?

Nope...nothing. I dont use lotions or creams or nothing like that. When it was at its worst I was just in bed all day....not even functioning.....definately wasnt worried about skin creams. I was just mainly worried about surviving....and I did. :D

Do you think Lyme could have been in my eyes.....or attacking my eyes??? OMG...I have to say...the eye pain...it was the WORST pain I have ever known in my life. I wanted to DIE. It went on for maybe 6 months and then got better. I actually went on prednisone for my eyes. I was only on it one week...not long at all. I felt worse after taking it though....it didnt help my eyes either.

AndreaB Contributor
AndreaB
Posted

Hey Rachel,

I guess I missed the link.....unless you put it back in.

Good to see you Chelsea. :D

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, I really hope that you will let those doctors know the Rachelville law. :lol:

:lol::lol:

YES....Trust me...they will know ALL ABOUT the Rachelville law. ;)

rinne Apprentice
rinne
Posted

Rachel, YES I am pretty sure it was the Lyme that hurt your eyes. As I understand it it often manifests in the eyes and knees because of the collagenous (not sure about that word) nature of the tissue, i.e. they can swim through it easily. Like I said, they have photos of them coming out of people's eyes and ears.

I've heard that a lot of people also have itchy ears, like from the inside of the ear. I don't have that, anyone?

I can the title of your book now, "THE RACHELVILLE LAW". :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, YES I am pretty sure it was the Lyme that hurt your eyes. As I understand it it often manifests in the eyes and knees because of the collagenous (not sure about that word) nature of the tissue, i.e. they can swim through it easily. Like I said, they have photos of them coming out of people's eyes and ears.

Funny thing is I didnt even have any redness in my eyes or anything visibly showing irritation...no floaters...just a whole lot of pain, pressure and sensitivity to light. It couldve still been the Graves Disease since the eye problems are a part of Graves....my eyes never bugged out though...they just hurt alot. It was after the radioactive iodine treatment that my eyes got so bad I wanted to die. I later read about how the RAI treatment worsens the eye problems with Graves. The whole thing just sucked and I think it was probably a combo of Lyme and Graves but I'm glad it got better. I was scared my eyes were gonna pop out of their sockets thats how much pressure there was. My thyroid Dr. had to keep measuring my eyeballs with this lovely metal gadget they use. My poor eyes....they went through so much. :(

If I had studied up on RAI more before I did it...I might have read about how it worsens the eyes and that alone would have kept me from doing the procedure. I think Dr.'s should warn patients of these things ahead of time. :angry:

rinne Apprentice
rinne
Posted

Rachel, I continue to be astonished at what you have gone through. You really are an inspiration. :)

I'm wondering if I can get your opinions on something. I was part of a group that I have dropped out of because I just don't have the energy to make commitments. I sent out an email to everyone in the group explaining why I was leaving and giving them information about Lyme. At the end of the email I invited people to phone me if they had any questions about Lyme. Tonight I received an email from a woman in the group I haven't met who began her email with:

I'm very sorry to hear about your sickness! I truly wish you good health

and improvement.

To that end, if you haven't heard about Usana Health Sciences, I'd like to

tell you more. They're a company that is at the leading edge of nutritional

supplement products.

Blah, blah, blah

It means a lot to me to help people, and Usana has helped a lot of people in

situations like you. I know that I have something to offer here. May I

give you a call to tell you more...so that you can consider this in your

treatment? by the way you describe what you are doing, I feel this natural

and effective type of nutritional support would fit right in to you belief

system.

May I give you a call about this? I feel this is very important.

This upsets me. I feel like, I don't know you, you don't know me, if you had read my whole email I said that anyone could call me so I wonder if you actually read the whole email I sent or only the first part that clued you into my being a potential purchaser. :huh: What I realize irritates me is that she is asking something of me under the guise of wanting to help me.

So what do you think? Has anyone else had an experience like this and how did you deal with it?

AndreaB Contributor
AndreaB
Posted

Hmmm, not really the best way to win a new client is it.

You could just ignore the email. If she doesn't get your permission to call, she probably won't. :)

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What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Gluten free thyroid medications

      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
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