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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator
If Patti winds up positive for lyme then I may really have to quesiton why I'm here. :P I think I'd be the only non-lymie unless I'm forgetting someone. :unsure:

Well everyone whos tested has been diagnosed with Lyme....but not everyone on the thread has done testing...so you're not the only non-lymie. ;)


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Rachel--24 Collaborator
Judy and Patti - - SO glad you're getting tested.......

Is Judy getting tested?? :unsure:

Did she post that here?? :huh:

Man...I am soooo lost right now. :wacko:

I'm also eating a yam right now. :ph34r:

Love to all.

Susan....back atcha. :wub:

AndreaB Contributor
Judy and Patti - - SO glad you're getting tested.......

Love to all. :wub:

Rachel,

Judy is seeing a doctor on Friday. I've mentioned she can't get the blood draw on Friday. I'm hoping this doctor will be willing to test for everything with Igenex.

Susan,

Have I told you I love your new photo?

AndreaB Contributor
Well everyone whos tested has been diagnosed with Lyme....but not everyone on the thread has done testing...so you're not the only non-lymie. ;)

So it's not looking too good for Patti then is it? :P

She may be the first negative one here (that's tested)........I still think it's a chance with her though.

Rachel--24 Collaborator

I remembered that maybe 3 years before I got sick I was having some cramps in my legs. :huh: This was before Tahoe....before my high fever....before break-up #1 and obviously before break-up #2.

The reason I remembered it is because it just happened to me right now....and it does happen once in awhile but not often at all.

So when it happened to me back then it was REALLY bad...in comparison to when it happens now. It was happening mostly at night...where I would stretch my legs in my sleep and instantly wake up in extreme pain and not able to move my legs due to these charlie-horse type cramps.

All I could do was hold or rub my legs until the pain stopped and I could move again. It would last only 1-2 minutes and then feel totally normal again. :huh:

It happened once when I stretched out in the bathtub and once when I was walking up the stairs. A couple times I ended up in tears and sometimes it was happening more than once a night. It was pretty much daily and sometimes it would happen when I stretched my arms too....so it wasnt only in my legs.

The episodes lasted maybe 2-3 weeks and that was it.

Anyone know what I'm talking about or why it might have happened. At the time I just thought "low potassium" cuz thats what my ex thought it was from....so I ate bananas. :)

Since it happens once in awhile now and somewhat frequently back when I was really sick...I'm wondering if its related to all this?? So maybe stuff was already happening way back then?? That would have been in 1999/2000.

Judyin Philly Enthusiast

HI RACHEL--WAS JUST TURNING OFF COMPUTER AND SAW THIS NOTE--

WELL--JUDY IS SURE AS HELL GIVING IT A BIG 3RD ATTEMPT. TO GET MY DR OF 25 YEARS TO DO IT.

I'M SUCH A MESS ABOUT THE APT ON FRIDAY.

I HAVE MY MATERIAL READY FOR HIM .................BUT..........................I'VE TRIED BEFORE

I PRAY I HAVE THE COHERENCES TO CONVINCE HIM.

ANDREA TOLD ME ABOUT THE ..NOT FRIDAY BLOOD DRAW.

I HAVE TO GET HIM TO AGREE TO GET IT DRAWN AND SENT TO IGENEX FOR THE KIT....

NOT SPENDING THE $$ UNTIL I KNOW

IF HE WON'T AGREE.........I WILL HAVE TO GO DR SEARCHING......

THE TIME IS NOW...

WITH THE LYMPH FLAIR LAST WEEK HAVE TO PICK MY BATTLES AND SOME DAYS ARE JUST TOO HARD.

LAURA ..WILL EMAIL SOME INFO FOR YOU

JUST WANT TO GET OFF COMPUTER AND GO TO BED EARLY.

HOPE TO GET UP AT 7:30 AGAIN AND HAVE COFFEE ON THE DECK AND ENJOY OUR NESTING BIRD FRIENDS.

THANKS TO YOU ALL.................I KNOW I'M NOT ALONE.

Rachel--24 Collaborator
She may be the first negative one here (that's tested)........I still think it's a chance with her though.

Not really....my Western Blots were negative....so were Laura's, Rinne's and Miamia's (although we all had positive bands suggesting Lyme....especially Mia).

We all got diagnosed based on additional test results, clinical symptoms, co-infections, etc.

But the WB's dont always come back positive even when Lyme is there....depends on production of antibodies.

Laura's redoing her Western Blots now that shes been on treatment and maybe jumpstarted the immune system into producing more antibodies. At least thats why I think shes retaking them. I'll probably retake them later on as well.

This is why its best to have an LLMD that wont just look at the Western Blot and make an assumption that you dont have Lyme....which is what the majority of regular docs do. They dont know how to interpret the results and they dont know how to proceed in ruling it in or out.

Most of those regular docs dont use Igenix either....they use Quest or other labs that arent nearly as sensitive as Igenix. I assume with one of those labs I wouldnt have had any positive bands at all.


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AndreaB Contributor
I HAVE TO GET HIM TO AGREE TO GET IT DRAWN AND SENT TO IGENEX FOR THE KIT....

NOT SPENDING THE $$ UNTIL I KNOW

That makes sense. Hopefully he will cooperate. All he needs to do is a draw. Hopefully he'll take Carla's doctors attitude (the one that did the blood draw not her LLMD).

Get some rest and I'll look forward to an update on Friday.

I hope you come back here more frequently again. :D

CarlaB Enthusiast
That makes sense. Hopefully he will cooperate. All he needs to do is a draw. Hopefully he'll take Carla's doctors attitude (the one that did the blood draw not her LLMD).

Yes, but I had the kit sent to me and took it to my doctor ... that way there was no excuse for her to not do the test. I was paying for it and had it with me, all she had to do was draw the blood and sign off on it.

AndreaB Contributor
Since it happens once in awhile now and somewhat frequently back when I was really sick...I'm wondering if its related to all this?? So maybe stuff was already happening way back then?? That would have been in 1999/2000.

Could be.....I don't know.

I know my right knee still bothers me but not all the time. I used to get pain from my knee down to my ankle and massaging it would make it feel worse. I couldn't handle it. Lately, it's just been my knee.

AndreaB Contributor

Well Talitha still hurts. I will call the doctor tomorrow if she's still hurting. The doctor is 4 hours away though. He's only over here every other week for 2 days. I really don't want to take her to the other doctor or the hospital. I don't think it's that serious though.

I was wondering if the chlorella could have this effect. She had 1/16th tsp chlorella yesterday and the day before. I wouldn't think that would have any effect like that though. She didn't take it today since it's icky.....even though we mix it with water and juice. I figure I'll let her go until we get testing done.

Rachel--24 Collaborator
IF HE WON'T AGREE.........I WILL HAVE TO GO DR SEARCHING......

THE TIME IS NOW...

Good for you Judy!!

I do hope your Dr. wont give you any grief and just orders the test without you having to search for someone.

I'm really glad you're gonna get yourself tested. I always remember you saying you got 4 bulls-eyes...thats always been kind of worrisome to me.

I hope you can get some answers for all this suffering you've had to deal with. I still think even with everything...you've handled it great...still doing your gardening and keeping busy. I'm still working in my yard again too. :)

HOPE TO GET UP AT 7:30 AGAIN AND HAVE COFFEE ON THE DECK AND ENJOY OUR NESTING BIRD FRIENDS.

That sounds very peaceful. I have nesting bird friends too....but they are over my doorway and I'm not liking it all that much. :(

It would be alot more enjoyable for me if they hadnt nested on my house. :rolleyes:

Patti.....yes the birds came back! :o HEINOUS!!

Rachel--24 Collaborator
Well Talitha still hurts. I will call the doctor tomorrow if she's still hurting.

I dont have any ideas as to whats causing T's pain but I hope she feels better tomorrow. I'm not sure if chlorella could cause that....did you say shes had the pain before?? If she has I wouldnt think its from the chlorella since she just started on that.

AndreaB Contributor
I dont have any ideas as to whats causing T's pain but I hope she feels better tomorrow. I'm not sure if chlorella could cause that....did you say shes had the pain before?? If she has I wouldnt think its from the chlorella since she just started on that.

Yes. The last time it was still her left side but around her hip. She says the pain is inside. I'm hoping it will work itself out during the nighttime.

rinne Apprentice
What do you mean Andrea....you've learned so much here I'm sure you can answer most questions like a pro. ;) ....I've witnessed it with my own two eyes. :)

Me too. :)

I don't know if anyone remembers me posting about the pain Talitha was having on her left side around her hip a few weeks (month :unsure: ) ago. Now she's got a pain on the same side but from her armpit/chest area down to the bottom of her rib cage.

I sure wish I knew what was causing her these pains.

I think she's doing a little better now but she explained this one as feeling like a needle and a rock we hitting her on the inside.

I'm so sorry to hear that, I hope she is feeling better now.

You're here because you're our friend and we love you! Plus, you have lots of dietary restrictions going on, the same as everyone here.

If I'm negative, which I expect, I'm not leaving, and you can't either ;)

You are honorary Lyme Clan members. :P

......

I still wanna know what everyone else thinks about their results though. I think me and Donna are the only ones thinking mercury/candida are contributing a great deal to our symptoms. We also have the highest CD57 count.

.....

I haven't had the CD57 but I am thinking mercury/candida are more of a problem than Lyme although with the night sweats lately F Babs may be on the rise. :(

......

So yeah...I've thought Bev had Lyme for a long time now..but people have to come to their own conclusions about stuff like this. I'm super happy that she came back to the thread with a determination to get this figured out. :)

Theres other posters that I get that same "gut feeling" about and I just hope that eventually they find their way to this thread or somehow get the information so that even if they're not ready to look into other things....it would still be something that was brought to their attention. Later on they might remember it.

Me too.

.....

I scheduled a 50 minute massage with him on Tuesday...I'm taking the day off and decided to treat myself.

Good for you.

When we were in NY and drove through NJ, I remembered that my mom went to college for a couple years outside of Princeton. I then wondered if I was born with it ... I had my tonsils out when I was 5 and was quite ill for a long time before that.

It wouldn't surprise me a bit if my mom had it.

I feel the same way and in fact it was because I had listened to my mother for thirty years going to doctors and getting no help that I knew I would have to investigate for myself.

:) Exciting day here in Rville, another Lymie. Isn't it crazy, we get excited when someone's diagnosed with Lyme? :lol: Newcomers reading this would think we're loony...and yet possibly haven't known the length of suffering some of you've endured.

Bev, I am SO happy you have this dx - - and yet I sort of felt it for you all along. HOORAY, an official answer!!! :rolleyes:

Judy and Patti - - SO glad you're getting tested.......

Love to all. :wub:

:wub:

......

THANKS TO YOU ALL.................I KNOW I'M NOT ALONE.

JUDY, SENDING HUGS, YOU ARE IN MY PRAYERS.:wub:

It really is a :wub: fest. :P:lol:

rinne Apprentice
Well Talitha still hurts. I will call the doctor tomorrow if she's still hurting. The doctor is 4 hours away though. He's only over here every other week for 2 days. I really don't want to take her to the other doctor or the hospital. I don't think it's that serious though.

I was wondering if the chlorella could have this effect. She had 1/16th tsp chlorella yesterday and the day before. I wouldn't think that would have any effect like that though. She didn't take it today since it's icky.....even though we mix it with water and juice. I figure I'll let her go until we get testing done.

Andrea, I see that Talitha is still hurting. :( I'm with Rachel, I don't think the chlorella would cause her discomfort like that unless perhaps she was burping a lot after drinking it. :unsure: Was she doing any unusual running or jumping today?

AndreaB Contributor
Andrea, I see that Talitha is still hurting. :( I'm with Rachel, I don't think the chlorella would cause her discomfort like that unless perhaps she was burping a lot after drinking it. :unsure: Was she doing any unusual running or jumping today?

She just told me about 1/2 hour ago that she fell earlier today so it could be a sprained/pulled muscle.

miamia Rookie

Oh god so much to reply to-

Donna-

Yeah on the massage and taking a day off. I am scheduling a massage today at this place by my house. I am very excited.

Andrea-

You are so importanat and add so much to this thread you always talk down your role here- YOU ARE SO IMPORTANT AND WE LOVE YOU!!!! In terms of talithas symptoms I don't know if they could be caused by the chlorella. But when I went to buy chlorella a while back the women told me that there is a very large percent of us who can't take it. I forgot the exact percent but it was huge I will google it later for you.

Bev-

yeah on getting a diagnosis- how scary is it that you like so many of us were walking aroubnd for so long with this and had no idea?

Ok quick update- I upped the diflucan to 2 and am on the estrogen pill. I think i may be ok witht he estrogen but the diflucan may be messing with me (which I know can be a good thing possibly if its killing the beasties) becasue I have felt really bad the last 2 nights since I upped it and I take it at night.

I was unable to make a cranio sacral appt. till next week thursday. but I am going to try to schedule a regular massage for early in the week I am going to try to see if there is a way to get my insurance to cover it. I feel like I really need it.

Oh and just to jump on the mushy band wagon- I love all of you and have no idea what I would do without this thread and all of your support.

dlp252 Apprentice

Well, UGGGG...I'm home sick...went to work but had to come home. I have really bad, bad D today. It's just pure water and bad stomach cramping and also left breast has shooting pains. Sometimes the shooting pain seems tied to breathing and sometimes it seems tied to my stomach cramping. Very odd. My head also felt really weird. As I was driving home from work I almost took a detour to the emergency room, but talked myself out of it...just doesn't seem bad enough yet for that. I just ate something so I'm hoping that will calm things down a bit. Lots of bowel noise today. :( I just know I couldn't have made it all day at work...been in the bathroom 7 times already this morning. :(

I couldn't get to page 1084, but think I've found a way to get around that, lol. I saw some quoted material from that page and did a search and when viewed the post with that text...the whole page 1084 came up! Yay.

THE ONE THING I DON'T WANT TO FORGET IS FOR DONNA

IS IT 'MLD' PT YOUR TALKING ABOUT.

MANUAL LYMPHATIC DRAINAGE..?

IT REALLY REALLY HELPED MY LYMPH EDEMA CAUSED BY CELLULITES BACK IN JUNE.

IT FELLS REALLY GOOD TOO.

THERE ARE DIFFERENT KINDS OF THIS THERAPY..AND MAKE SURE THE PERSON IS CERTIFIED TO DO IT.

GOOD LUCK

Yes, lymph edema is what he was talking about...he said that required a different technique and they DON'T do that there, so if my friend (Rachel) had that they couldn't help. :P

My Dr. said over 100 and Scott recommends over 150 before stopping treatment.

...

I'll try to link the page but dont know if it'll work or not...

Open Original Shared Link

Its interesting to see how other Dr.'s are using the test. I still think if symptoms are gone and the CD57 is only around 60...or even less then 100 the risk for relapse seems high. I dont know why some LLMD's would go by 60??....heck...I'm at 78 right now. I think I would definately wanna see my count alot higher when I'm feeling good again.

Thanks for the link! What you are saying makes sense. Both Scott and Dr. S said my number wasn't great, but wasn't horrible.

Judy/Donna:

Thanks for bringing this up. I am working on finding a good PT to do that. My dr. wrote me a prescription to have it done, as my lymph nodes swell during my flares, causing me a huge amount of pain. Judy, I'm happy it provided you with some relief. When you have a chance, can you share what you know about it and what type you had, etc?

My lymphs are practically always a bit swollen, but especially when I don't feel well...for those 3 years I was on antibiotics, my lymps were pretty swollen (as my chiropractor at the time told me)...I'll bet that was when the lyme was doing its worst on me.

Oh well...thats how I am...I have to say everything thats on my mind or I dont feel "settled"...I've been that way all my life. I definately dont hold stuff in.

I think this is very healthy! :) And, you manage to get it out and say it in a nice way too...that's even healthier!

Donna,

Thanks for asking.

I'll have to call Nancy and see if I can get an appt. I definately like strong hands for a massage so I'm not too worried about that. :)

and YAY for taking a day off and treating yourself.

Yep, and this weekend I will scrub my tub, and buy some bubble bath then when I'm done with the massage I'll come home and take an epsom salt bubble bath soak! Then I'll sit in the sun for a while. That should do it. The only thing that would make that day more perfect is if I could find a chocolate peanut butter ice cream that I could eat. :P

Exciting day here in Rville, another Lymie. Isn't it crazy, we get excited when someone's diagnosed with Lyme? Newcomers reading this would think we're loony...and yet possibly haven't known the length of suffering some of you've endured.

It is a bit loony isn't it. :lol: It's just that you can't treat something if you don't know what it is...it's just nice to know what it is FINALLY! :lol:

She may be the first negative one here (that's tested)........I still think it's a chance with her though.

Comparing myself and Patti...I would have been the most unlikely candidate for lyme, so I think her chances of a positive test are pretty good, lol. :lol: Can you say New Jersey?! :lol:

So when it happened to me back then it was REALLY bad...in comparison to when it happens now. It was happening mostly at night...where I would stretch my legs in my sleep and instantly wake up in extreme pain and not able to move my legs due to these charlie-horse type cramps.

...

Since it happens once in awhile now and somewhat frequently back when I was really sick...I'm wondering if its related to all this?? So maybe stuff was already happening way back then?? That would have been in 1999/2000.

I don't know if it's related...I've never had much cramping except in my intestines and some in my hip, but a couple of months ago I had a SEVERE charlie horse thing in my sleep. That's why I started taking magnesium. I didn't think it was a potasium thing with me, but it was probably magnesium, so I bought some. I almost had another one a few weeks later, but managed to rub it out before it got bad. I haven't had any more since then though. I stopped taking magnesium a few weeks ago, but I think I'm getting some in my supplements. I have a new supplement that Anna gave me that is magnesium...Dr. S wants me to take it but I'm afraid. :P Sheesh...if I have D now, what will that do to me! :unsure:

AndreaB Contributor
I am scheduling a massage today at this place by my house. I am very excited.

Good for you. :) and thanks. :D

I do worry about you with the diflucan and such.

Well, UGGGG...I'm home sick...went to work but had to come home.

Do you think it's your meds or combo of meds? Did you eat something that your body doesn't like?

Sounds miserable. I do hope things calm down for you.

Comparing myself and Patti...I would have been the most unlikely candidate for lyme, so I think her chances of a positive test are pretty good, lol. :lol: Can you say New Jersey?! :lol:

Yep, I can say New Jersey. :P

You did a lot of hiking though.....don't know if she has/did.

Hey Patti!.......are you avoiding all the talk about you? :rolleyes:

jerseyangel Proficient

Donna,

Sorry you are so ill today :( I was scared when you said you considered going to the ER. Anyway, it's good you're home--remember to drink lots of soothing liquids to make up for what you're losing. Get some rest, and I hope your stomach settles down. :)

Rachel,

I get the muscle cramping all the time. Like every time I stretch! It's in both calves and sometimes in my feet. Once in a while, it happens in my left hand--that's freaky! The hand actually holds the position locked until I massage it. :unsure:

I eat bananas every day (they are very good on my stomach and my go-to food ;) ) and also potatoes several times a week.

I don't take any suppliments, though, because I've yet to try one that dosen't upset my stomach.

My stomach runs my life :angry:

jerseyangel Proficient
Hey Patti!.......are you avoiding all the talk about you? :rolleyes:

:lol: It does look that way, dosen't it? :lol:

I actually had a doctor's appointment this morning (2 moles removed, one on my face :o ), then I stopped at Wegmans. I was so excited--they had Enjoy Life Chocolate Chips and the Enjoy Life Trail Mix!

So, I'm just really getting through the reading now. I have lived in NJ now for about 10 years. I'm from Syracuse, NY and lived in Georgia for a while, too. Always in the east.

I don't do any hiking or anything like that now, but I used to spend a ton of time at a friend's camp at a lake in the woods in central NY. We would horseback ride, go barefoot, sit in the grass-- all that stuff.

I also work outside in my yard a lot--my house in GA was on a wooded lot, and in north Jersey we backed up to a wildlife preserve. We used to watch the deer frolic from the kitchen window. Actually, we have them here, too. A couple years ago, I almost hit one with my car right here in town.

It's not out of the realm of possibility that I got bit and didn't know it.

I'm still going ahead with all of the tests the new GI wants to do. I still can't discount the possibility of SIBO or something related. That is associated with Celiac, and I already do have that diagnosis.

Would be a kick in the head if I had both.... :lol:

dlp252 Apprentice
Yeah on the massage and taking a day off. I am scheduling a massage today at this place by my house. I am very excited.

I just LOVE my massages...need to get back to the regular full body massages...I stopped them when I started going to BioSET...it's a tradeoff.

Do you think it's your meds or combo of meds? Did you eat something that your body doesn't like?

Sounds miserable. I do hope things calm down for you.

I don't know...I took a new supplement today, EFA (essential fatty acids). I took one pill with all my other supplements this morning. I did start burping a bit, but it hardly seems possible that that could have started the D so quickly. My commute is 30 minutes, and it hit the MOMENT I got to work...is 30 minutes enough time for it to affect the bowels? If it was Vit C, maybe, but fatty acids? It could be a combo of things though...I just don't know anymore. Blech.

Hey Patti!.......are you avoiding all the talk about you? :rolleyes:

Yeah, nothing like talking about you when you aren't looking. :P

Donna,

Sorry you are so ill today :( I was scared when you said you considered going to the ER. Anyway, it's good you're home--remember to drink lots of soothing liquids to make up for what you're losing. Get some rest, and I hope your stomach settles down. :)

Yeah, it was the head thing that really scared me...and the shooting pain in the breast. I also can't drink much water...I was trying to do that while I was at work thinking it would help, but everytime I drank some I felt like throwing up. The nausea has calmed down a lot already, but I'm only taking small sips of water here and there...that may not be enough though.

I'm supposed to get my allergy shots today...when I'm done here I'm cancelling. Don't need the allergic reaction on top of this.

Cruiser Bob Newbie

For Rachel and the rest of you (guess I'll get no visits from you all :)) Anyway, this was in the Tahoe Daily Tribune on the 15th. Bob

"The Lake Tahoe Basin may not be home to as many ticks as other regions of California and Nevada, but tick-borne relapsing fever, a rare bacterial infection, has made its presence known around the basin in past years.

"There's only a couple dozen cases reported around the country each year," said Dr. Jason Eberhart-Phillips, El Dorado County public health office. "Tahoe will sometimes have a good share of those."

The single variety of hard tick responsible for Lyme disease cases originating in the West is relegated to milder regions, but the soft tick responsible for tick-borne relapsing fever has an affinity for high altitudes, tree squirrels and chipmunks, according to the Centers for Disease Control.

Three reports of tick-borne relapsing fever came out of the basin last summer, and five in 2005.

No cases of tick-borne relapsing fever have been reported so far this year, but the risk increases as more summer residents and visitors return to the basin. Special attention needs to be paid to rodents and the ticks they carry in lodging that has not been occupied during the winter months.

"The only time humans ever get exposed to them is when they spend time in rustic cabins in mountainous areas like Tahoe," Eberhart-Phillips said. "It's when people come back to mountain cabins and summer vacation lodging, and rodents have moved in, that we present ourselves as new hosts."

People often don't know they've been bitten by the soft tick varieties responsible for tick-borne relapsing fever because they are nearly invisible to the naked eye and contact generally occurs at night.

"You'll never even know they were there. They have a painless bite. It may be happening, we just don't know," Eberhart-Phillips said. "If you're living in an environment where rodents are, you have to assume the ticks are there."

Initial symptoms of the disease include fever, body aches, chills and sweats occurring in episodes over several days, followed by additional symptoms such as nausea, vomiting, confusion and dizziness. A seven-day regimen of antibiotics is generally effective in treating tick-borne relapsing fever. The disease is rarely fatal, but serious complications may result if it's left untreated.

"The important thing to do is to rodent-proof buildings and really make sure the rodents are gone and to fumigate if rodents have been nesting." Eberhart-Phillips said. "Prevention is the best thing here."

Local author releases second book on Lyme Disease

South Lake Tahoe resident, Bryan Rosner's personal struggle to find effective treatment for Lyme Disease has found an outlet in the release of his second book, "The Top 10 Lyme Disease Treatments."

Rosner's first book, "When Antibiotics Fail ... Lyme Disease and Rife Machines" has sold approximately 5,000 copies since its release in 2005, according to the author.

While his first book focused on the electromagnetic therapy, a treatment Rosner has found helpful, his latest book expands to cover recent breakthroughs in conventional and alternative treatments for Lyme disease.

The bacterial infection, contracted through the bite of an infected tick, is much more prevalent on the East Coast than in Western states, but Centers for Disease Control statistics show a "cluster" of cases in the Sierra Nevada, according to Rosner.

The author said these cases are likely from people, like himself, who live in the Sierra Nevada but contracted the disease elsewhere.

Typical symptoms of the disease include fever, headache, fatigue and a typically "bulls-eye" shaped rash, according to the Centers for Disease Control. If left untreated, the infection can spread to joints, the heart and the nervous system.

Standard treatment for the disease is a three-week course of antibiotics, but many people do not recover with standard treatment, according to a press statement from Rosner.

Although the author is not a doctor, "Bryan's work is derived from numerous sources, including his personal experience with Lyme Disease, input from hundreds of other Lyme sufferers, clinical and laboratory studies, and collaboration with leading physicians on several continents," according to his latest book. "Bryan communicates with researchers and physicians worldwide, and many of the treatments found in his books are unpublished and unknown to the public in the United States."

"The Top 10 Lyme Disease Treatments" retails for $35 and is carried by Grass Roots Natural Foods and Neighbors Bookstore in South Lake Tahoe. More information is available at www.LymeBookStore.com"

AndreaB Contributor
I was so excited--they had Enjoy Life Chocolate Chips and the Enjoy Life Trail Mix!

Trail Mix!!! I didn't know they had a trail mix......do tell. :D

I love my enjoy life chocolate chips. I'm not on the candida diet as I don't want mercury floating who knows where.

Would be a kick in the head if I had both.... :lol:

I certainly hope you don't have both....but either way it will be answers.

It does sound like lyme could be playing enough games with you to keep you sick but functioning. I'll be very curious as to how both turn out. Is the SIBO the 7th?

Are you going to order the Igenix kit and take it in to the doctor. You probably don't have time to get it in the mail though with the holiday do you?

I don't know...I took a new supplement today, EFA (essential fatty acids). I took one pill with all my other supplements this morning. I did start burping a bit, but it hardly seems possible that that could have started the D so quickly. My commute is 30 minutes, and it hit the MOMENT I got to work...is 30 minutes enough time for it to affect the bowels? If it was Vit C, maybe, but fatty acids? It could be a combo of things though...I just don't know anymore. Blech.

I don't know if it would cause D that fast but it certainly sounds like it didn't agree with you.

I'm supposed to get my allergy shots today...when I'm done here I'm cancelling. Don't need the allergic reaction on top of this.

Yes, definately cancel. Do you really need those anymore?

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    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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