Omg...i Might Be On To Something

[Mtndog]

hi Celia and Miamia! missed you both.

Rinne- i was checking out the salt/ C treatment protocol for Lyme. I think I remembered you saying it was increasing your energy. Is this right? I'm interested in it and read a bit on Lyme strategies. thanks for posting that link!

[CarlaB]

hi Celia and Miamia! missed you both.

Rinne- i was checking out the salt/ C treatment protocol for Lyme. I think I remembered you saying it was increasing your energy. Is this right? I'm interested in it and read a bit on Lyme strategies. thanks for posting that link!

It's increased my energy!

Hi Celia, was just thinking of you today, and here you are!!

[Rachel--24]

I have a question..

How would you guys read these results??

Is this a positive or a negative?

results 1:160 Titer

Interpretation of antibody titers:

<1:40 Negative

1:40 Indeterminate

= or >1:80 Positive

So are the results positive or negative??

I dont know how to read this.

[CarlaB]

Looks negative ... 1.16 is < 1.4

[Rachel--24]

Seeee....thats what I'm thinking too! The Dave pointed this out awhile back....we were confused because the Dr. is saying this is positive???

Could the Dr. be reading the results wrong??

This is the results to one of the Lyme tests...the one that is suppossedly "positive".....but I'm thinking its not positive.

The other results were weak positive. Maybe I dont have Lyme??

I asked the Dr. AGAIN at my appt. last week.....I asked him how its a positive and he said because the results are higher than 1:80.

I dont get it.....it looks lower to me.

I am SOOOOO confused....does anyone else notice that throughout my ordeal there has been about a gazzilion mix-ups with blood draws, test results, etc. WTH is going on???

OMG....if I didnt have Lyme I think I would do cartwheels right now....well actually I dont know how....but I would try.

I'm gonna bring my results to the Bioset lady Tues and see what she says....or maybe I should call Igenix tomorrow.

I still have that other Igenix test out there so I guess that might tell more but I just want to be certain that these results are positive...I think they are negative!!

I think I have a better chance of recovering if I dont have Lyme though.

OMG...can you imagine?? First I'm telling everyone I dont have it.....then all of a sudden I DO have it.....and now maybe I dont???? How crazy is that???

[happygirl]

x

[Rachel--24]

I honestly don't know. I can honestly read it both ways (it depends on what it means, because 1:160 could be less than 1:40 or it could be greater than 1:80, it depends on if we are solely looking at the second value, or if it is a numerator/denominator deal here). I'm sorry I don't have more info. I woud definitely specifically clarify with you doctor....but you know that already.

Thanks Laura,

Its really confusing...I just assumed that the Dr. knew what he was saying so I left it alone but its kind of bothering me. I mean theres a chance that he could make a mistake...he's human afterall.

Its a new test that Igenix has come out with...well I *think* it may be new (it was complimentary with my Western Blots)....maybe the Dr. hasnt seen alot of these results and is reading it wrong??? Thats the only thing I can think of because otherwise I would think he couldnt make a mistake like this....but with my track record....anything is possible.

Hi Morgan!!

[morganb]

I have to make this quick since I'm trying to write a paper, but I wanted to say....Thank you Andrea for the hug

[happygirl]

x

[Rachel--24]

Hi Celia.....good to see you. Hope you are doing well.

Susan...You are such a great person...making all of us smile and laugh with your wittiness.

Life is not passing you by....although I'm familiar with the feeling all too well.....its really not. We are here...and some days may not be as good as others but from what I can see (with my x-ray vision through this computer screen) you have alot of GOOD TIMES. It may seem lonely right now....because we are single and all that.....but believe me....it wont be forever.

You'll find joy and happiness.....You got diagnosed around the time of your break-up right? It hasnt been that long...broken hearts take longer to heal when we have sickness to deal with. You're gonna get stronger, feel better, meet a great guy (cabin included) and you have the dingo's who love every minute with you.

I, for one, love that I have gotten to meet you here on the board. I think you bring extra sunshine to the thread....wouldnt be the same without you....and it wasnt while you took your break.....we missed our DingoGirl.

I can relate to all that you've said in your post....some days I cry all day too. Its because I'm not doing everything I want to be doing...I feel kind of trapped I guess. Other days I laugh all day....its alot of ups and downs we go through but we're gonna come out of this...on the UP side.

We all love you Susie Q. (stealing that from Julie temporarily ).....hope you feel better....tomorrow is a new day.

Morgan...Totally love the new pic. I just think matching clothing is the CUTEST thing ever!

Andrea......How did the pictures go??? Are you ok today??

Laura,

I guess I'm gonna call Igenix tomorrow because obviously the Dr. is reading it from the second number and saying its positive. I just feel I should find out if this is the *correct* way to be interpreting the results. It would just be so much easier if they would stamp a BIG "negative" or "positive" right there are the paper. For people like me....who just dont get it.

Sheeeeesh....I cant even figure out my bills and I'm suppossed to be able to "get" this.

[morganb]

Thank you. We were wearing our Indiana Sweatshirts to the football game and plus our coats because it was cold. Mom had put her hood up so when Dad wanted to take a picture I decided to put mine up too

[Rachel--24]

Soooo....even if the results ARE positive (which I'm not convinced they are) I think it may still not PROVE Lyme Disease. This is what the report says:

The Lyme Immunoflourescence Assay (IFA) detects antibodies (IgM, IgG, IgA) against B. burgdorferi. IgM-specific titers usually persist in the presence of the disease. Antibody levels tend to rise above background levels about 2-3 weeks after infection and may remain elevated in case of prolonged disease. Based on our in-house validation on over 140 patients sera. the Igenix Lyme IFA exhibits sensitivity of 100% and specificity of >80% for Lyme Disease at a titer of 1:80. The validation study included sera from from patients positive for B. burgdorferi, EBV, HSV, syphylis and autoimmune diseases. Because of the >80% specificity, we recommend confirmation of all IFA positive sera by Western Blot.

Sooo...what is this saying exactly?? Does it mean there is a 20% chance it could be positive due to another condition...other than Lyme?? Is that what they're saying??

Any opinions on what this means...am I interpreting it right?

Also what is HSV.....is that Herpes virus or something else?

[DingoGirl]

oh you guys.....*sniff* *sniff*

You all and your kind words and thoughts just made me really tear up. I am weepy all day....I shouldn't post on days like this, I just did it without thinking, don't mean to steal the thread when I have another zero-to-crazy-in-no-time-flat days. And today was another and GUESS WHAT, I am getting really sloppy, it was another glutening. Please, I don't expect any sympathy....but I awoke feeling like death and the thoughts were SO bad all day (still are but I did get an invite to one of my most funnest friends' houses for Christmas dinner and Christmas Eve is already taken care of so I can calm down, for now). And sure enough....the telltale D and terrible stomach pain came a bit later today. Last night, ate some smoked salmon for dinner, thought I had had it before but evidently had not, and it is poison. so that is my second glutening of the week, I am noting all these days on my calendar and now keeping a food journal....and must be extremely careful from now on as I can't have these days - mentally and emotionally, I don't even care about the physical stuff.

But I still DO feel that life has passed me by...... Maybe that will pass, too.

Rachel - - you know, you are right though about healing from that stupid relationship - when I forgot to menion that sports team I do not like....I don't give R that much thought any more, he crosses my mind but I don't have a smidgen of missing him. That is ONE thing I am extremely grateful for.

I have had a great deal of fun and adventure in my life, it just seems all in the past now, life is just going a little too slowly for me these dyas and it's been the most unspeakably bad two years of my life, since before moving home, I just never expected it would be like this. And, baby steps is all I can do. I jsut get so discouraged and I know many of you can relate to this, feel I have lost so much of my SPIRIT in the last decade or so.

I take heart and courage from your spirits, your words, your ferocity and determination in fighting for well-being.....we are all in this together but my fight has certainly been more mental than physical, and I feel so badly for so many of you who are just feeling crummy day after day, month after month. You are all brave and heroic.

Rinne.....your words have charmed me as always but I am a FORMERLY brave Dingo Girl.....well still kind of crazy in some ways, you know I WOULD knock someone in the head without hesitation with my Iriquois Skull Cracker that hangs near the front door if they were involved in attempted malfeasance anywhere in my home or nearby.....I just don't have any of that crazy rock-climbing ferocity I have had all of my life, I want at least SOME of it back.

RICHARD - - have I lost my mojo?? Have you found yours?

Thank you to Allison, Andrea, Bev, Rachel, Rinne, Carla, Miamia, Jessica, Laura, Donna, Richard (you goofball, while I'm running like Phoebe I may as well throw in an Elaine foot-jerk dance also )and I HATE naming people as I am always afraid I'll miss someone.......and I am SO sorry to be whining once again.....if I EVER make a sad weeply pitiful post again, someone PLEASE me what I ate the night before....it didn't occur to me until mid-day that I"d eaten the smoked salmon....... sometimes I will try a new food to see if it's safe....there is a crab thing I am planning on making with chipotle chiles in adobo sauce.....dear God help us if that sauce has gluten.

okay....crawling into the warm bed to read the paper and then some mindless Desperate TV, I suppose.

Love you all so much and wish we were closer. Someone needs to fund our mountain lodge reunion in.....well someplace close enough that I can drive and bring my dingos.

wub you guys.

HI CECILE!!!!! come back again, you silly goof!

[Rachel--24]

someone PLEASE me what I ate the night before....it didn't occur to me until mid-day that I"d eaten the smoked salmon....... sometimes I will try a new food to see if it's safe....there is a crab thing I am planning on making with chipotle chiles in adobo sauce.....dear God help us if that sauce has gluten.

Susan, maybe dont try anything new.....unless you're 100% sure its gluten-free....at least for awhile. It hasnt been that long from the gluteny donut splurge.....give yourself a little time to heal. Remember what happened.....the effects took a few days....could you still be having a delay-time like that?? I think its good that you're keeping a log....it'll really be helpful when there has been an obvious glutening. Could it have been something from a couple days ago or is the salmon the only new thing??

[rinne]

Rinne- i was checking out the salt/ C treatment protocol for Lyme. I think I remembered you saying it was increasing your energy. Is this right? I'm interested in it and read a bit on Lyme strategies. thanks for posting that link!

The salt gave me back my energy, my feistiness and my sense of humor. I love salt.

I have a question..

How would you guys read these results??

Is this a positive or a negative?

results 1:160 Titer

Interpretation of antibody titers:

<1:40 Negative

1:40 Indeterminate

= or >1:80 Positive

So are the results positive or negative??

I dont know how to read this.

Not a clue, I am wondering though what you think of the Bioset results showing Lyme?

[Rachel--24]

I am wondering though what you think of the Bioset results showing Lyme?

I think that its something not to be ignored but its not diagnostic.....it even says so on the BioSET website. The tests cannot diagnose a disease. I think that it would warrant further testing.....had I not already had those tests to begin with. I think this is why my Dr. ordered the Igenix full panel though...because he wasnt gonna ignore the BioSET results....which indicated all these Lyme bugs.

[Fiddle-Faddle]

Smoked salmon has gluten? Oh, crap (literally), something else that has often (but not always)given me D. Who'd have thunk it?

Susan, I was thinking that it's hard enough for the rest of us to convince the medical community that our D and rashes are real reactions to gluten. Heck, I went years not even NOTICING my own digestive reactions--never put it together til I had the Rash From Hell. Your emotional crashes, obviously gluten-charged, are every bit as real a reaction to gluten, and thank Heavens you have the brains to figure that out, as I can't imagine a doctor having enough brains to, at least not in this country.

Sp my next thought is, the rest of us have toilets to deal with the digestive reactions as our body rids itself of poisonings--there's gotta be some kind of strategy we can come up with to help the crushing depressions you get when glutened, because accidents are bound to happen occasionally--but what can you do????

Do you have a surge of energy BEFORE the crash hits, or do you just go about your normal day and then crash out of nowhere?

Would small amounts of caffeine help, like they are supposed to for migraines, maybe speed up your metabolism to excrete the poison more quickly--or would caffeine cause a rebound crash even worse?

Could tears be your body's only way of excreting "mind poison?"

Is it maybe a thyroid thing? I know the times I have been depressed (crying all day for no apparent reason--happened once post-partum and once pre-kids when my doctor switched me from synthroid to an equal dose of levothroid, saying she had had other patients who couldn't tolerate synthroid)were linked with my thyroid. I've read so much here lately about Armour, but haven't yet tried it because mine seems to be reasonably under control, but I'm just wondering if glutenings cause your thyroid to temporarily not function, or your body to not be able to process thyroid hormone correctly, or something like that. And, by the time you get to the doctor to be tested, everything is just fine again, so your thyroid tests normal?

Just thinking out loud here, wishing I could solve this for you...

we recommend confirmation of all IFA positive sera by Western Blot.

Did you have a Western Blot?

Could your doctor be intrerpreting the results as, if you even have 1/160, that's one more than you should have at all and therefore Lyme is in your system somewhere, even if not in as large proportions as the current protocol recognizes?

What are bergdorferi and EBV? Is HSV herpes simplex virus?

[DingoGirl]

Susan, maybe dont try anything new.....unless you're 100% sure its gluten-free....at least for awhile. It hasnt been that long from the gluteny donut splurge.....give yourself a little time to heal. Remember what happened.....the effects took a few days....could you still be having a delay-time like that?? I think its good that you're keeping a log....it'll really be helpful when there has been an obvious glutening. Could it have been something from a couple days ago or is the salmon the only new thing??

This is something I was wondering.......I KNEW when I first removed gluten and was eating so simply that my reactions were almost exactly 12 hours later. And then, the donut cheating mystery happened.....seriously delayed reaction time so now.....I just flat-out don't know what's going on, hence the food log.

Allison....so many good thoughts and I do think the tears are a way of clearing out gluten. I don't know about the thyroid...jsut had it tested and all looked normal except the T4 was quite on the low side. I will meet with my GI soon adn discuss this with him. The smoked salmon..... There was a really good one from Trader JOe's that never gave me any problems, they don't have it any more.....so I tried a new one. There was something slightly "fishy" ha ha on the label, but I bought it any way as was just craving it and had to try.

the ONLY thing that has worked for me for the mental/emotional torture of glutening is Klonepin. Yup, I'm a freaking drug addict. well, they're for emergencies.....I took them for the first 2 days of work, and don't need them there any more, thank god, as the intial panic is over. So now, they're for glutenings, but I didn't take one today as didn't really have to BE anywhere and just decided to wait it out, but my thoughts were TORTUOUS and it was an unbelievably heinous day, crying on the phone with my mom but not answering for anyone else.

Caffeine....I drink a bit of green tea every day now, I do love it, was supposed to be off caffeine but this just seems to do lovely things for me all around and is more agreeable than coffee, somehow.

I did swing my arms extra hard in the orchard today...might have looked like a crazy person but no one else saw. That I know of.

Rinne....I bought black Hawaiian salt at Trader Joe's yesterday. In your honor also. Dang, it was expensive for this tiny, precious bag. I"ll be going to the health food store for a quantity of Him-ahl-yian salt to get the bugs out.

I am totally missing out on the scientificness of that discussion you all are having about RAchel's numbers.

[Rachel--24]

Could your doctor be intrerpreting the results as, if you even have 1/160, that's one more than you should have at all and therefore Lyme is in your system somewhere, even if not in as large proportions as the current protocol recognizes?

What are bergdorferi and EBV? Is HSV herpes simplex virus?

No.....he's not looking at it like that...he's reading it as 1:160 is greater than 1:80. He's going by the numbers and anything greater than 1:80 is a positive test result.....although I think 1:160 can be a lower number and therefore negative.

I did have the Western Blots....they were weak positive.....but not strong enough to be positve.

B. burgdorferi is the Lyme bacteria....its named after the guy who discovered Lyme. Billy Burgdorferi.

EBV= Epstein Barr Virus

I think your right about HSV...I was thinking it had something to do with herpes virus but wasnt sure.

[Fiddle-Faddle]

(scratching head) Is there a decimal point missing? 1.60 and .80, maybe? Otherwise I can't figure out his math....

[AndreaB]

I've been reading here and there too...just wanted to say "hi" to all you guys!

Hi back to you. Come visit more.

Celia-

I've missed you

miamia

Missed you too Miamia

I have a question..

How would you guys read these results??

Is this a positive or a negative?

results 1:160 Titer

Interpretation of antibody titers:

<1:40 Negative

1:40 Indeterminate

= or >1:80 Positive

So are the results positive or negative??

I dont know how to read this.

The way I'm reading these is by the second number. If it's under 40 it's negative, between 40-80 indeterminate, and over 80 positive. I would think it would be just plain 16 if it was negative. 1:160>1:80

I have to make this quick since I'm trying to write a paper, but I wanted to say....Thank you Andrea for the hug

Hi Morgan. Good to see you and I also love your new avatar.

I, for one, love that I have gotten to meet you here on the board. I think you bring extra sunshine to the thread....wouldnt be the same without you....and it wasnt while you took your break.....we missed our DingoGirl.

Hear, hear. Couldn't agree more. Susan, you are wonderful and don't let anyone (or yourself) tell you otherwise.

Andrea......How did the pictures go??? Are you ok today??

Pictures went spendidly. We won't get them back until the 28th. I was hoping to get them before leaving for Arizona. Well, I'll take Seth's six month photos down.

We just went through a 2 hour power outage. Mitch got to cook dinner on our propane cookstove. Not to bad. We've had it for 8 years and just broke it out of the box tonight. Seth wasn't too sure he liked the house being so dark, but as long as I was nearby (or Daddy), he was fine.

oh you guys.....*sniff* *sniff*

wub you guys.

Right back at you.

[Rachel--24]

The way I'm reading these is by the second number. If it's under 40 it's negative, between 40-80 indeterminate, and over 80 positive. I would think it would be just plain 16 if it was negative. 1:160>1:80

So do you think its positive??

When I asked the Dr. he answered like this...he said "Its poitive because anything greater than 1 and eighty is positive and yours was 1 and one hundred sixty." Does this make sense to you cuz it still isnt making sense to me. There is no scientificness here....its just plain math and I suck at math.

[Rachel--24]

OK...so I guess I was looking at it like if it was really one hundred sixty then the first number should become a 2?? But I suppose thats not how the test is read.....it looks like the first number stays a 1 and we are only looking at the second number....which makes my test very positive.

Can you tell I'm trying to "erase" my Lyme Diagnosis....

A girl can hope right...

[miamia]

This is something I was wondering.......I KNEW when I first removed gluten and was eating so simply that my reactions were almost exactly 12 hours later. And then, the donut cheating mystery happened.....seriously delayed reaction time so now.....I just flat-out don't know what's going on, hence the food log.

Allison....so many good thoughts and I do think the tears are a way of clearing out gluten. I don't know about the thyroid...jsut had it tested and all looked normal except the T4 was quite on the low side. I will meet with my GI soon adn discuss this with him. The smoked salmon..... There was a really good one from Trader JOe's that never gave me any problems, they don't have it any more.....so I tried a new one. There was something slightly "fishy" ha ha on the label, but I bought it any way as was just craving it and had to try.

the ONLY thing that has worked for me for the mental/emotional torture of glutening is Klonepin. Yup, I'm a freaking drug addict. well, they're for emergencies.....I took them for the first 2 days of work, and don't need them there any more, thank god, as the intial panic is over. So now, they're for glutenings, but I didn't take one today as didn't really have to BE anywhere and just decided to wait it out, but my thoughts were TORTUOUS and it was an unbelievably heinous day, crying on the phone with my mom but not answering for anyone else.

Caffeine....I drink a bit of green tea every day now, I do love it, was supposed to be off caffeine but this just seems to do lovely things for me all around and is more agreeable than coffee, somehow.

I did swing my arms extra hard in the orchard today...might have looked like a crazy person but no one else saw. That I know of.

Rinne....I bought black Hawaiian salt at Trader Joe's yesterday. In your honor also. Dang, it was expensive for this tiny, precious bag. I"ll be going to the health food store for a quantity of Him-ahl-yian salt to get the bugs out.

I am totally missing out on the scientificness of that discussion you all are having about RAchel's numbers.

Susan-

It seems like my reactions have become more delayed as well- making it that much harder to figure out the culprit!!! With things like smoked salmos and anything where stuff could be added I play it really safe- I have very few stores I trust and even if their completly out of the way I only go to them- its worth the extra money or travel time. Sorry you have been feeling so low I really brealte lately I definitly feel like my life is passin mme by. Everyone around me seems ot be moving forward- getting married, pregnant new jobs and I am stuck in this loop. My own personal de ja vu and it sucks. (sorry ao negative)

OK...so I guess I was looking at it like if it was really one hundred sixty then the first number should become a 2?? But I suppose thats not how the test is read.....it looks like the first number stays a 1 and we are only looking at the second number....which makes my test very positive.

Can you tell I'm trying to "erase" my Lyme Diagnosis....

A girl can hope right...

Rachel-

Is it possible even if you don;t have lyme that the bioset treatment could be helpful for you. from the research I did on it it sounds llike it is helpful for so many things.

Miamia

Hi back to you. Come visit more.

Missed you too Miamia

The way I'm reading these is by the second number. If it's under 40 it's negative, between 40-80 indeterminate, and over 80 positive. I would think it would be just plain 16 if it was negative. 1:160>1:80

Hi Morgan. Good to see you and I also love your new avatar.

Hear, hear. Couldn't agree more. Susan, you are wonderful and don't let anyone (or yourself) tell you otherwise.

Pictures went spendidly. We won't get them back until the 28th. I was hoping to get them before leaving for Arizona. Well, I'll take Seth's six month photos down.

If anyone aside from Rachel wants a family photo, or just a photo of all the kids (may have to be those) then pm me your address and we'll add you to our holiday letter list.

We just went through a 2 hour power outage. Mitch got to cook dinner on our propane cookstove. Not to bad. We've had it for 8 years and just broke it out of the box tonight. Seth wasn't too sure he liked the house being so dark, but as long as I was nearby (or Daddy), he was fine.

Right back at you.

ANdrea-

thanks I have not been posting as much I ahve been really overwhelmed. I got a biopsy and endoscopy done for eos on Friday and I find out the results this thursday. From what Laura has told me even if the test comes back negative there are still all these things you ahve to look out for. I got put on anesthesia - which I ahve to admit I loved- but it put me really out of it I think I am finally coming around today. I have to talk to my docot so we can make up a plan to deal with the results from my last stool test. I ahve really bad candida - HE told me it was the most yeast hes ever seen shown up on that test- so I think I ahve to go on a strong medication with lots of side effects to really kill it- I am not excited but if its what I ahve to do I guess I am going to.

I am so sorry to hear thinggs with your father have not improved. You are so strong and your family is very lucky to have you in times like this.

Miamia

[Rachel--24]

Rachel-

Is it possible even if you don;t have lyme that the bioset treatment could be helpful for you. from the research I did on it it sounds llike it is helpful for so many things.

Definately I'll keep doing Bioset....for detox purposes and to de-sensitize the things I'm reacting to...BioSet doesnt treat Lyme so I'm not going to Bioset for Lyme treatment anyway...I'll keep going to my appts. as long as I can afford it. I think my Dr. was reading the results the correctly....I think I'm understanding it now but I'll proably still call Igenix just to make sure.