Omg...i Might Be On To Something

[jerseyangel]

Hey Susie,

The tea does have a lot of spices--maybe it was too strong for you.?

Fruit--ugh! As time goes on, I can eat less and less of it

Hope you're feeling better now

Is flax hard to digest? I've been afraid to try it

[Rachel--24]

If anyone has trouble getting the Igenix test....

A Note On IGeneX

In late 2005, the New York Times knowingly published an inaccurate article about the accuracy of IGeneX's tests, including saying it had failed certification. In fact, IGeneX was in the midst of a routine recertification, something that all labs are required to do, and, as always, it passed, both in New York and California, the two most difficult states in which to get certified. If your doctor or family tells you IGeneX is 'bad', print out the the CLIA 2005-2007 certification and tell them to go do the research that the New York Times refused to do--and ignored when the certification was sent to them.

A defination of the test results

Band Markings

When reporting bands, the reporting laboratory marks each band with the following indicators of intensity:

- Not present

+ Low

++ Medium

+++ High

+/- Equivocal = indeterminate (there, but not as intense as Low)

BTW don't bother renting The Breakup if you haven't already...they wrecked that movie. Could have been SO adorable and they were just mean to each other and fighting all the time after the first 15 minutes. Heinous.

I really liked the movie...

I think I probably should have hated it....given the heinosity of my own break-up ordeals...but I actually liked it.

[jerseyangel]

Carla,

I know what I was going to tell you before all of this seriousness took over...

In one of the catalogues I got the other day, I saw a tee shirt that says--"I (red heart) Mr. Darcy"

[CarlaB]

Carla,

I know what I was going to tell you before all of this seriousness took over...

In one of the catalogues I got the other day, I saw a tee shirt that says--"I (red heart) Mr. Darcy"

Oh!! You HAVE to tell me which catalog!!!! That is sooo funny!

[jerseyangel]

Oh!! You HAVE to tell me which catalog!!!! That is sooo funny!

It's "Signals". In their holiday gift edition.

Their phone # is--1-800-669-9696.

It's a white long sleeve shirt with black script and a red heart. Cute

[CarlaB]

It's "Signals". In their holiday gift edition.

Their phone # is--1-800-669-9696.

It's a white long sleeve shirt with black script and a red heart. Cute

Thank you!

[AndreaB]

okay...so not the Stash tea..... I don't know what then but I DO know that I can't eat grapes any more. But there was nothing new yesterday.....that means it was the QUANTITY of flax seed chips yesterday from Trader JOe's....I can't eat half a bag. WHAT is with the binge eating, I ask you?

Flax is one of the things on the list my doctor gave me for Mitch. It is a natural stool softener.

Somehow I think he'd listed flax oil, but it's all pretty much the same.

[rinne]

I was dancing to latin music...on Saturday nights the radio station broadcasts from a club. Thats what I listen too....dance/club music. I probably listen primarily to latin music, sometimes a little country (if I'm feeling mopey), sometimes hip-hop, sometimes old school, occassionally some classic rock. It depends on my mood.

Have you ever heard Orishas? They are a Cuban rap group and very fun to dance to.

[dlp252]

Yeah....thats how I felt!! Nothing ever showed up...making it look like I was some kind of hypochondriach freak.

I was starting to think it was all some kind of cruel joke.....that I was getting punished for something in a past life or something. How could I feel like this and everything is normal???

They just werent running the *right* tests...so when they run the *right* test....something will show up.

I hope so in my case too, but I'm almost afraid to get my hopes up, lol. I think that's my little way of protecting myself. Some people may think I'm negative sometimes, but I just don't want to be disappointed and if the testing comes up with something then I can rejoice.

Hilarious.

When I was a kid...rollerskating through Gloden Gate Park (SF)...I skated right into a telephone pole.

I cant really blame it on the Lyme though...

OMGosh, a few years ago I went out for a walk after work and was just walking along very briskly when up ahead I saw a fire hydrant. Saw the darned thing for probably 5 minutes before I got close, and sure enough I CRASHED into the stupid thing! I hobbled back to work where my friend (the cruise buddy) looked at my VERY black and blue knee and asked what happened. I told her--it's been a running joke for years now...it was painful but funny at the same time.

[Rachel--24]

In one of the catalogues I got the other day, I saw a tee shirt that says--"I (red heart) Mr. Darcy"

Who is Mr Darcy??

[CarlaB]

I hope so in my case too, but I'm almost afraid to get my hopes up, lol. I think that's my little way of protecting myself. Some people may think I'm negative sometimes, but I just don't want to be disappointed and if the testing comes up with something then I can rejoice.

OMGosh, a few years ago I went out for a walk after work and was just walking along very briskly when up ahead I saw a fire hydrant. Saw the darned thing for probably 5 minutes before I got close, and sure enough I CRASHED into the stupid thing! I hobbled back to work where my friend (the cruise buddy) looked at my VERY black and blue knee and asked what happened. I told her--it's been a running joke for years now...it was painful but funny at the same time.

We live in an old house and have a detached garage. The other day I opened the garage door from inside the house and walked out and into the garage. The garage door was not up far enough yet, so I smacked my head into it. I don't quite know how I got out there so quickly, or how I didn't see it. I swear, it could have been in a movie.

Who is Mr Darcy??

From Pride and Prejudice. If you've seen You've Got Mail, it was a copy of Pride and Prejudice (that's why they kept referring to it in the movie) .... so was Bridget Jones Diaries (his name was even Darcy). My husband was my Mr. Darcy ... I thought he was a pompous @ss for about a year before I started dating him.

[rinne]

Rinne....

Good scientificness about the bands. I had one positive 58 and one negative 58. Did Lymetoo ever get back to you about your results? She had told me that 58 and 66 were indicative of Lyme...those were the ones I had but one was on the IgG and the other on the IgM. Did you have any differences on your results...IgM and IgG?

It seems like the 39 band is the most specific for Lyme...we both had IND's on the 39 band.

My IgM results don't show anything really, 23-25 were IND and 41 was IND also. This is what concerns me in terms of how long I have had Lyme.

Rinne...

I found this...it just gets more confusing to me. I dont think any of the positive bands on my test can totally confirm Lyme Disease. The *most* significant on my test would be the IND's on band 39 and band 34. I think IND's are significant but I would still rather see a positive here.

I think doctors have to do is look at our symptoms using a variety of diagnostic tools, the Igenex Western Blot is only one tool. I agree, it would be nice have it clearly reflected in the test but then Lyme is not like that it is stealthy.

[dlp252]

I missed the group hugs earlier so, here's mine {{{{HUGS}}}}

Patti - I am glad you feel you can come here!!!

I love everyone on this thread.

Hum, I credit my hysterectomy in 2001 for the "trigger" of the major health problems. Before that I did have increasing numbers of bouts of bronchitis and other things, but not really serious stuff. But it wasn't long after the surgery that I started getting those "sinus infections" every six weeks. The first one was so bad that I was on my couch for an entire week. I had a high fever, aches all over my body, stuffy nose, chest, etc...and yet it wasn't like a flu or cold either. I missed a whole week of work that time...doc put me on augmentin and predisone...about six weeks later got another one, which didn't last as long....more antibiotics and prednisone...and the cycle continued until last year when I cut out casein/gluten.

[jerseyangel]

Hi Donna Hugs back to you!

I can relate to the antibiotics/prednisone and the "sinus infections" Are we really sure we didn't have the same doctor? You know, maybe a bi-coastal one

[AndreaB]

Donna,

I am so glad to hear that your sinus problems got better going gluten/casein free. I would have hated to be on meds that much.

Hugs and

[Rachel--24]

My IgM results don't show anything really, 23-25 were IND and 41 was IND also. This is what concerns me in terms of how long I have had Lyme.

I think doctors have to do is look at our symptoms using a variety of diagnostic tools, the Igenex Western Blot is only one tool. I agree, it would be nice have it clearly reflected in the test but then Lyme is not like that it is stealthy.

Yeah...stealthy.

I dont know how I feel...I need more certainty. I've been researching and without the 39 or 34 being a clear positive I have big ??'s in my head.

Some of the other bands...especially 41 arent all specific for Lyme. I read that ALL Lyme patients are positive for 41 but it could also be positive from other bacteria...besides Lyme.

I had the positive IFA but it's only 80% specific....it could be positive due due cross-reactivity from other bacteria or from autoimmune disease.

I just want to have a clear answer on this...now I dont know how I can be certain. No wonder my Dr. is pursuing other testing. I think he wants to make sure we will be treating the right thing.

I wonder about the co-infection test?? If I *have* co-infections...does this prove Lyme Disease? Can I have co-infections and *not* have Lyme?? Obviously my Dr. would know....but I dont wanna wait till Dec 4th.

I love everyone on this thread.

So cute....

(((((((hugs))))))) back at you Donna.

[AndreaB]

I just want to have a clear answer on this...now I dont know how I can be certain. No wonder my Dr. is pursuing other testing. I think he wants to make sure we will be treating the right thing.

I wonder about the co-infection test?? If I *have* co-infections...does this prove Lyme Disease? Can I have co-infections and *not* have Lyme?? Obviously my Dr. would know....but I dont wanna wait till Dec 4th.

What about the bioset that said you have lyme and the 19 coinfections. Wouldn't that be specific? Or could that be some other bacteria? What about the tick bite?

[jerseyangel]

I just want to have a clear answer on this...now I dont know how I can be certain. No wonder my Dr. is pursuing other testing. I think he wants to make sure we will be treating the right thing.

I know you do, and it's frustrating to say the least. I'm glad your doctor is persuing the other testing, and not putting all of his eggs in one basket just yet.

I just want you to be comfortable with your diagnosis with no lingering questions. I know it's going to happen.

I knew Lyme was hard to diagnose, but I didn't realize all that was involved.

[Rachel--24]

What about the bioset that said you have lyme and the 19 coinfections. Wouldn't that be specific? Or could that be some other bacteria? What about the tick bite?

No BioSET is not a specific method of testing. BioSET cannot diagnose any disease....its also highly sensitive so it can pick up things that arent really there. Its kind of like ELISA food intolerance testing....its not diagnostic or specific.....just a tool to figure stuff out....there can be false positives or false negatives. It can give you an indication of what *might* be going on but I wouldnt *rely* on the BioSET results for a diagnosis.

None of these alternative methods can truelly diagnose a disease. I would like confirmation on something as serious as this. I want to get better so I dont want to make the mistake of treating something that isnt there.

I'm not saying I doubt the Lyme Disease...I think its *likely* that I have it but right now I dont know if *likely* is good enough for me....or for my Dr.

I never saw a tick on me....I had a weird bite and some flu-like symptoms sometime during Sept/Oct of 2002. I cant say with 100% certainty that I got bit by a tick. Only that if I *do* have Lyme.....that would have most likely been when I got infected. I dont recall ever having flu-like symptoms like what I experienced any other time..there is also no other bite mark that stands out in my mind. I cant say for sure though...I've always been "outdoorsy" and an explorer. I'm the one that will always want to wander off and try to "find" something out in the wilderness.

I just want you to be comfortable with your diagnosis with no lingering questions. I know it's going to happen.

Thanks Patti.

[AndreaB]

No BioSET is not a specific method of testing. BioSET cannot diagnose any disease....its also highly sensitive so it can pick up things that arent really there. Its kind of like ELISA food intolerance testing....its not diagnostic or specific.....just a tool to figure stuff out....there can be false positives or false negatives. It can give you an indication of what *might* be going on but I wouldnt *rely* on the BioSET results for a diagnosis.

None of these alternative methods can truelly diagnose a disease. I would like confirmation on something as serious as this. I want to get better so I dont want to make the mistake of treating something that isnt there.

Ok, it makes more sense now.

I guess another question would be could something else have made a bite mark and rash, etc. You've been on antibiotics since then haven't you. Maybe that helped and you need to address coinfections. I'll be waiting for your appointment on the 4th as well.

[jerseyangel]

None of these alternative methods can truelly diagnose a disease. I would like confirmation on something as serious as this. I want to get better so I dont want to make the mistake of treating something that isnt there.

This is very true.

[Rachel--24]

I guess another question would be could something else have made a bite mark and rash, etc. You've been on antibiotics since then haven't you. Maybe that helped and you need to address coinfections. I'll be waiting for your appointment on the 4th as well.

I think any stupid bug could have made the bite mark.

Sorry....I just thought that was funny.....seriously though....I dont know that any bug could have made a bug mark that lasted as long as that one did....and with that little circle around it.

I'm gonna take a walk to the mailbox later...maybe there will be some Igenix results in there. My blood was drawn on the 4th....so its been over 2 weeks now.

I'm gonna call you in awhile ok??

[rinne]

I think your doctor is smart enough to know that you want PROOF. And why not? After all you have been through Rachel, yes, you need to be clear.

For me, it is obvious, I have most of the symptoms, I remember the rash, my health has been compromised ever since then and I can trace the development of the disease.

Interesting side note about the Samento, it is also used to treat Celiac disease under the Nutramedix protocols. See: www.nutramedix.cc

[Rachel--24]

What do you guys think of my new avatar??

This is when I started getting sick...BUT....I had the dental work done this same week...a few days before my camping trip. 3 months after this picture...I was on disability.

There was a CRAZY amount of deer at our campsite. They came before I started feeding them....people must have already been feeding them so they knew what they wanted.

I have more pics...will put up another one later....you will be shocked.

Maybe I got bit again and got another infection......maybe it tipped the scales??

[rinne]

I think your new avatar shows that you have matured to the point of safely exercising lunacy. Congratulations.