Omg...i Might Be On To Something

[AndreaB]

Carla, coffee is one of those things that I wish I could drink. I absolutely love the smell--the coffee aisle in the grocery store (with the grinder) is the one aisle I love to go down Also Starbucks. I always get tea there, though

I must be one of the few that hates coffee. Ick, yuck, patooey!!!

I use either Purex or All-- the Free and Clear versions of both. Wisk (the hypoallergenic one) was on sale a couple weeks ago, and that one was ok, too. I can't stand the least bit of a smell on my clothes.

We use all free and clear.

Also Carla, please don't make me go back--when are your results due?

She just had her test done on the 13th. We probably won't hear back until the beginning of December at least. I think it takes 3-4 weeks.

[Rachel--24]

Rachel, I agree, positive .... you just need to get through this period of denial.

I know...I'm working on it.

I have denial about the gluten too.

[AndreaB]

Andrea....I thought of something. Now that I'm all messed up I'm highly reactive to mold. I got really sick when I went to that moldy house in San Francisco and I knew it was because of the mold.

Now I'm thinking probably the Lyme was already having an affect on me in subtle ways....I think I was reacting to traces of mold probably still under the car seat.

I prefered to always drive my own car cuz it bothered me that much.

That sounds perfectly plausible to me. Isn't it amazing when we go back and try to fit the pieces in the puzzle how some things start jumping out at us?

Good thing you don't work in the produce section anymore.

[jerseyangel]

Thanks, Andrea!

[AndreaB]

I LOVE to smell these foods....plus its nice to smell things that dont make me sick.

Gotta celebrate every victory. I see that as one.

You didn't pm your appointment times. You still can if you want me to help you remember your new times.

I know...I'm working on it.

I have denial about the gluten too.

Yes, still after over 1 year. Something tells me I'll have lots to work on you with when we talk (for at least the next year )

[Rachel--24]

She just had her test done on the 13th. We probably won't hear back until the beginning of December at least. I think it takes 3-4 weeks.

Igenix takes about 2 weeks. It might be a tiny bit faster for me since my bloodwork doesnt get shipped there....its only a couple blocks from my Dr.s office so it gets there within hours. I would think the shipping wouldnt add on much time though....it should be express.

[AndreaB]

Igenix takes about 2 weeks. It might be a tiny bit faster for me since my bloodwork doesnt get shipped there....its only a couple blocks from my Dr.s office so it gets there within hours. I would think the shipping wouldnt add on much time though....it should be express.

That would be even better.

I was thinking of Rhonda's test but maybe hers took longer since she's out of the US. I think hers took 3 weeks.

Oh goody, less time to chew fingernails.

[rinne]

I think my test took four weeks, I had it done on October 19th, but maybe that has something to do with my being in Canada or maybe IgeneX is getting busier.

The Buhner book was helpful to me in understanding the test, basically what I got was don't invest your attention in only positive or negative results, read the indeterminate to see what is being really being said.

I am curious to see what Hoffman says.

Yes Rachel, I think it is clear that we have Lyme.

[Rachel--24]

Rinne...

I missed this the first time I read the article. It sounds like bands 66 and 58 can be positive for other bacteria....not just lyme.

By the way...band 66 was positive on my IgM results but negative on IgG.

Band 58 was negative on my IgM but positive on my IgG.

The double starred bands have more significance (23-25, 31, 34, 39, 41 and 83-93). We were both positive on band 41...plus IND on other double starred bands. This is from that article.

In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands.

About 58 and 66

Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands. These bands may be produced by Borrelia burgdorferi, but are not nearly as specifically associated with Lyme borreliosis as the starred bands. These starred bands are classic hallmark borrelia-associated antigen-antibody complexes.

[happygirl]

x

[rinne]

I'm going to need a coffee to process all this scientificness.

[Rachel--24]

Yes, Ladies, I think you have Lyme, too I have been trying to follow along with all of this and it really makes me curious for what Carla's pending results are, and the course that Julie's further diagnosis/testing will bring. One of my thoughts (and, I know everyone's on here) is even if we don't get a "solid" diagnosis (even though I joke that's the only thing on my Christmas list!), if it gets us on the path to getting better, that is what I have to focus on. I might not like it --- I think I deserve a diagnosis --- but sometimes its just not possible.

So yeah, thats all I had to share

Laura,

I'm anxiously awaiting Carla's results as well....Its possible they may be negative (even if she has Lyme) due to the fact that shes been ill for 30 years. The antibodies may not show up when a person has a long-term infection.

When the Lyme borrelia are alive, they are geniuses at avoiding the immune system. They may do things like go inside your white blood cells, and come out enclosed by the cell membrane of your own white blood cells! This may partly explain why antibodies against Borrelia burgdorferi are often not found when patients are tested.

What may happen when patients are given 4 weeks of tetracycline (or other antibiotics) is that some of the bacteria die. When Borrelia burgdorferi dies, it is less efficient at avoiding the immune system. That's when antibodies may be formed against Borrelia burgdorferi, converting the negative or equivocal Western blot to positive, in about 36% of cases.

I would also like to see Beverly get tested.

I know its pretty safe to say that I have Lyme and I did have the one bloodtest come back positive. It should be enough for me but I guess I'm one of the one's who wants it to be "solid". It may already be at that point but my Dr. hasnt said it yet....so I dont feel like I got "diagnosed".

I agree though...whatever gets us on the right path is where we need to focus.

For the last 3 years all I've wanted for Xmas is a diagnosis...I think this year I'll have it. I should know for certain and most likely have started treatment by the time Xmas gets here.

[dlp252]

People, I have lyme.

I went to my bioscan lady today and I tested for it. I asked if that meant I had lyme, and she said well I'm not allowed to say that...but this would be a very strong indication, that YES, I have lyme.

Anyway, just thought Id share.

Hope everyone is having a great day

Sorry, I'm behind the times, JULIE!!!! Lyme clan.

....was expecting another joke from Donna or something.

HEY!!!!!!!

I know with not being chronically ill that I don't understand everything, but I do try.

Love you guys.

You do a GREAT job!!!!

[AndreaB]

Laura,

I'm anxiously awaiting Carla's results as well....Its possible they may be negative (even if she has Lyme) due to the fact that shes been ill for 30 years. The antibodies may not show up when a person has a long-term infection.

I would also like to see Beverly get tested.

Rachel,

Wouldn't it be possible that the salt/vit c would have brought some of these guys out of hiding?

I want Beverly to get tested through Igenix as well. It seems to fit.

Donna,

You can go see the bioset lady first and see if she comes up with lyme at all......be sure to ask when you go see her.

When do you leave for your cruise?

[dlp252]

For those of you who've lost parents maybe you know what she means. Unfortunately, I will probably know sooner rather than later.

Yep, unfortunately I think I know...don't know if I could say HOW I changed, but it was definitely a turning point.

[Rachel--24]

Rachel,

Wouldn't it be possible that the salt/vit c would have brought some of these guys out of hiding?

I thought about that...I also dont know if the salt/vit c can create a false negative??? This is what it says about being on antibiotics *while* getting tested.

Antibiotics may actually help with the laboratory diagnosis. But patients need to be off antibiotics about 10 to 14 days before the Western blot is repeated. This sounds like a contradiction. Antibiotics may help convert the test to positive, but patients need to be off antibiotics when the specimen is drawn.

It is well documented in medical literature that the presence of antibiotics may cause false negative borreliosis testing. Therefore, your system should be free of all antibiotics for an accurate blot result.

I dont know if Carla was still taking the salt/vit c 10-14 days before testing?? I also dont know if the salt/vit c has the same capabilities of creating a false negative like what can occur while on antibiotics??

[CarlaB]

Also Carla, please don't make me go back--when are your results due?

The blood was overnighted on Tues. of this week, and it takes 2-3 weeks.

[Rachel--24]

Gotta celebrate every victory. I see that as one.

Andrea read all the 10 commandments.

[dlp252]

Donna,

You can go see the bioset lady first and see if she comes up with lyme at all......be sure to ask when you go see her.

When do you leave for your cruise?

Yep, I'm going to go see the BioSET lady...I just can't decided WHEN to do it...now or wait until after the first of the year. If I saw her now, I couldn't spend much time with her if I needed to clear pathways or anything.

I leave on December 1, but the cruise leaves on Dec. 2...so in exactly 2 weeks I'll be sipping my water from my balcony looking at the waves.

[CarlaB]

I dont know if Carla was still taking the salt/vit c 10-14 days before testing?? I also dont know if the salt/vit c has the same capabilities of creating a false negative like what can occur while on antibiotics??

Yes I was. I would think the salt/c would be much milder than the antibiotic, so I wonder if it would be able to have the same effect.

[AndreaB]

Andrea read all the 10 commandments.

Did I do good with #7 or transgress 2 or 3?

I have problems with 2 because I like to help brainstorm. I guess it's a good thing that we talk on the phone and not in person. I'll have to try and watch that....I don't want to make you violent.

Yes I was. I would think the salt/c would be much milder than the antibiotic, so I wonder if it would be able to have the same effect.

What I was wondering is if the salt / vit c would help stir up the critters and bring them out of hiding more. Not to mention the sauna. What do you guys think?

[CarlaB]

Today I haven't taken a sauna yet and I have a lot more energy than I normally do. I think I'm going to test taking it before bedtime instead of in the early afternoon. But, I also haven't taken any supplements today, so maybe that has something to do with it, too. Something is stirring stuff up ... I just don't know what it is that's getting stirred up! I'm having a lot of muscle aches, too.

[Rachel--24]

I guess it's a good thing that we talk on the phone and not in person. I'll have to try and watch that....I don't want to make you violent.

ROFL

Andrea....I cant imagine you, in all of your mother henliness, ever making anyone violent!

I have never noticed you trangress #2 or #3.....or any of the others.

My mom does though.....almost daily.

The other morning as I was leaving for work...complaining about my head being swollen and all the chemical sensitivies....my mom held up a box of Sudafed and said "I know how you feel...I had to take this yesterday because I'm having the same stuff going on with my head too!."

WTH????

She honestly thinks she can relate.

What I was wondering is if the salt / vit c would help stir up the critters and bring them out of hiding more. Not to mention the sauna. What do you guys think?

Andrea....I dont think it works that way because the test isnt actually looking for the bacteria. Its looking for antibodies created by the immune system....the results will depend on the state of the immune system and the amount of antibodies its producing. If the salt/vit c is powerful and having the same affect as antibiotics....if its killing the bacteria......the immune system may start producing more antibodies that will show up in testing. I'm just not sure what affect natural treatments would have on testing. I wonder if there is any info. out there about that??

[AndreaB]

Andrea....I cant imagine you, in all of your mother henliness, ever making anyone violent!

She honestly thinks she can relate.

You haven't met my daughter. I don't make her violent, just very mad.

I think moms like to think they can relate (and I think some can), if they can't do that they disagree all the time (at least my mom does). I guess I better keep that in mind for when I'm older (or should I say when Talitha is older ).

My mom was actually nice today and didn't bring up any disagreements. Wanted to know how the intolerances were going. We need to be careful with the citrus with Talitha but it seems she can have some. Straight oranges don't seem to bother her. Problem is the citric acid in the fruit spreads. Seems like it is citrus derived most times.

If the salt/vit c is powerful and having the same affect as antibiotics....if its killing the bacteria......the immune system may start producing more antibodies that will show up in testing.

Isn't herxing killing off of the bacteria?

[Rachel--24]

Isn't herxing killing off of the bacteria?

Yup. The problem is....how do you know if you're experiencing a Herx reaction or you're just reacting to something your taking?? This is what I went through on the Candida diet all the time....constantly feeling crappy from everything I was taking. Everyone kept saying it was die-off (herxing)....that it was a good sign that I was killing the yeast. After awhile I started to doubt this because I wasnt getting better. From what I read a true Herx reaction should be temporary....at the onset of treatment but then the Herx should subside.

Thats not what was happening with me.....I think I was just plain reacting to the stuff I was taking and it was making me feel worse.