Omg...i Might Be On To Something

[Rachel--24]

I love you too sunshine

j

Rachel, just saw your post so adding to celia's.

Boy your some researcher..I can't make heads or tails out of the 'bands' so this just means after your apt tomorrow and you report back, we'll all have more scinecetificness (?) to learn ...yeah..your a big hepl to us all for sharing your struggle back to good health. good luck tomorrow.

love

j

Judy,

Yeah....I know....its confusing stuff.

If I've got it right the "bands" are what become visible to the lab people performing the tests.

Theres all these different parts of the lyme bacteria and our immune system doesnt just make one big antibody against Lyme....it makes a bunch of different antibodies to attack all the different parts of the Lyme bacteria. When the different "bands" show up in the bloodtest then its showing the lab person that those antibodies are present for that part of the Lyme bacteria. If certain bands are visible then I think it indicates that the Lyme bacteria is definately present and the immune system is definately fighting it.

Oh...depending on how thick or dark the band appears to be I think thats how they determine the intensity of it. I had some bands appear at a low intensity. As for the most important bands in the test....I had one that was positive at a medium intensity level and then 2 that were Indeterminate...those 2 must have been very faint. Those are the ones that could have made my test positive if one of them would have had a higher intensity.

Thats my interpretation anyway...I'm still a newbie at this.

Holy cow--just parachuted in here after not being able to even try to keep up with this thread for a few weeks now. Something told me I should peek in and see what's going on with you, Rachel. Wow.

I'm glad you're geting some answers, and that those answers point to a light at the end of the tunnel. I hope your appointment goes well tomorrow--keep us posted, okay?

Thanks!

I'll let everyone know more tomorrow. I'm sure my heads gonna be swimmin' with scientificness.

[AndreaB]

Rachel,

Don't know if you are really still on (even though it says you're here)......go to bed my friend and we'll look forward to your post of scientificness tomorrow.

Email me that link if you will (when you get a chance)....shouldn't be turned to lame advertisement then.

[Rachel--24]

Andrea, No prob...I'll email you the link later (if anyone else wants it let me know).

Yeah...according to the site I was up all night....forgot to close everything down. I did sleep though....just not the 15 hours I would have wanted.

[Mtndog]

Rachel- I'm sending good vibes your way.....it's not that I want you to have lyme disease, I just want you to have an answer!

You know we'll all be here for you regardless

Beverly

[dlp252]

I just wanted to say I really care about the people on this thread and I'm not going anywhere.

Thank you!!!

Hmm Talking about lectins.. I found a page which talked about IgA involvement in binding lectins.

Open Original Shared Link

Got me to wondering if that isn't why my IgA was so high. Because when I was tested I was eating soy & peanuts (which I found out later are closely related to the white bean which I'm IgE to.)

I may have my doc re-run the test for IgA and see. This is the only reference I've seen anywhere online a reference to IgA doing something other than gluten.

Anyway, I don't think I have problems with all lectin foods, but it does help fill in some blanks. I still eat most grains (cept corn) with no problems, potatoes, and tomatoes. Just everything else that I avoid: Dairy, legumes, peppers, corn.

Anyway, just thought I'd share my info.

Thanks for the webpage...I'll look at it in a bit (still trying to catch up on what I've missed, lol). And, I just wanted to say again, thank you for the information...that is exactly what this thread has evolved into...a place where we can all try to help each other figure out those last few problem areas.

Dave -- Welcome back. Always good to hear from you.

Wow, lots happening here overnight.

Welcome to all the newcomers. I hope you feel at home and find some of the answers you seek. There ALWAYS seems to be someone around with a proverbial pot of coffee on to chat and help us work through all our stresses.

Just wanted to say hi and wish everyone a happy thanksgiving (it Thanksgiving weekend up here!) I guess I should also include wishes for a safe and happy Columbus day long weekend for you all!

Hi Ryan! Hope your Thanksgiving was/is good... (not sure exactly what day it is for you, lol).

[Green12]

Rachel,

SO good to see you back posting

I will be thinking of you today, hope you have a very productive appointment, and I look forward to hearing all about it.

[dlp252]

Rachel - WOW!!! Holy cow, I missed a bunch this weekend, lol. I'm glad you looked at that report, so now you can really ask some specific questions today at your appointment. I'm so excited to hear the results! Pins and needles really, lol.

***

I took a small break from the boards this weekend. I wasn't feeling good so left work at 9:30 on Friday, and basically just took it easy all weekend. I was VERY dizzy, slightly nauseated, very headachy and extremely fatigued. Blech, lol. Feeling better today...still dizzy, but at least not feeling nauseated and the headaches and extreme fatigue are better.

I get my permanent crown put on today...I already got the statement from the insurance company--they don't pay for porcelain on molars, so probably will have to dish out another few hundred dollars. Small though compared to what I will probably spend getting all the amalgam taken out, lol.

Aluminum...I stopped using foil a couple of years ago...plastic too. I try to use glass or stoneware containers whenever possible and use stainless steel pans. I don't know one way or another if they affect me, but decided since I was so sick the last few years that I didn't want to take a chance, lol.

[Green12]

Hi Donna! Glad you are feeling better today after taking it easy over the weekend. Good luck with your dental appt today, hope all goes well with your crown.

Are you looking into getting your amalgams out?

[dlp252]

Are you looking into getting your amalgams out?

Yes, I think so, lol. I have an appointment with a mercury specialist dentist next week. I don't know for sure what I want to do yet, but I figure a consult with him won't hurt (much, lol). I have so many amalgams and so many gold crowns...it just can't be good.

[AndreaB]

Donna,

I can't imagine why insurance wouldn't chip in for porcelain. My dentist didn't even offer me gold, gold is more expensive. Of course, I didn't have insurance, but I would think if he was pushing gold he still would have brought it up.

Rachel,

We'll be waiting to see what your doctor says.

Hi Julie and Bev.

[CarlaB]

Donna, doesn't insurance at least cover the part they would cover for another material to be used? Maybe you can ask the dentist if any of your filling look like they're ready to be replaced, then at least insurance should cover part of those.

Rachel, glad you are getting to the bottom of things. Looking forward to hearing what happens at your appt. today.

[dlp252]

I'm not sure about the porcelain thing...I already paid close to $500 for it (they always want me to prepay my part on these kinds of things), so I'm hoping the dentist's office took into account the porcelain/gold thing...they're usually pretty good about estimating the actual costs. I never understood why the insurance company would have a problem with a less expensive material, but maybe because for molars it isn't as long-lasting...don't really know...can't figure the darned insurance companies out at all, lol.

[AndreaB]

Attention Everyone!

Rachel asked me to let everyone know that her computer is down and she will post about her appointment as soon as she is able, after the computer gets fixed.

We've all waited this long, we can wait a little bit longer, right?

[dlp252]

Attention Everyone!

Rachel asked me to let everyone know that her computer is down and she will post about her appointment as soon as she is able, after the computer gets fixed.

We've all waited this long, we can wait a little bit longer, right?

OMGOSH! NOOOOOOO, lol. Okay, really, of all days for the darned computer to not want to work!

[Green12]

OMGOSH! NOOOOOOO, lol. Okay, really, of all days for the darned computer to not want to work!

I know, the torture. More waiting.......

Thanks for letting us know Andrea

[Rachel--24]

OMGOSH! NOOOOOOO, lol. Okay, really, of all days for the darned computer to not want to work!

OMG....Donna thats exactly what I was thinking this morning when I got to my Mom's and saw this taped to the monitor:

RACHEL,

Dont try to use the computer...it is very broken. Someone will come tonight to try to fix it.

Off all days for that to happen!!

Sorry to hear you felt bad over the weekend.

I cant wait to hear what Dr. Adams has to say at your consult.

Ok...the guy just left and the computer is fixed but I'm WAY tired. It was the longest day ever!

I learned alot at my appt. I most likely have Lymes Disease. The doctor had the same results I had already seen but he also got another test back from Igenix that I didnt get. Apparently they are including a free test right now. I guess the test is new and it was developed by Igenix. Its an antibody test (IgG , IgM, IgA).

It says antibody levels tend to rise above background levels about 2-3 weeks after infection and may remain elevated in the case of prolonged disease. The test exhibits a sensitivity of 100% and specificity of >80% for Lyme Disease.

The results for that test were positive for Lyme disease.

It says because of the >80% specificity, they recommend comfirmation with the Western Blot test. The results that came back "weak" positive were that of the Western Blot. So...now what??

My doctor wants another test to confirm a Lyme diagnosis. He said either electronic testing or traditional Lyme testing. The traditional tests are pretty useless and he said so himself....they are less sensitive than the Igenix so I dont see how they will help.

Julie....I think you did electronic testing before??

He said he would prefer this type of testing because it will give him alot of info. about whats going on with me. He said it will find the problem areas....it will let him know about mercury, Lyme, mold, food sensitivities, sensitivities to other things like supplements, etc. He wants to get a whole picture and also get confirmation of Lyme.

It seems like his main focus is on Lyme, Mercury and Mold. He says these are the things that cause chemical sensitivities and other symptoms similar to mine. Obviously Lyme is at the forefront because of positive test results but he doesnt seem like he wants to jump into any diagnosis w/out being totally sure. He wants to know if mercury is an issue too. He's asked me about mold exposure about 50 times already. He said mold is the most common cause of this stuff so he wants to make sure I'm not missing something with that. I know I'm not....I have no exposure to mold in my environment and I dont feel sicker at my own home or at my moms house.

A friend of mine moved into a moldy house and when I visited him I could smell mold immediately and I reacted very badly to it. I know for sure if it were anywhere in my home I would know it and I would react to it. We had our home built so it was brand new when we moved in...no water damage....no mold. I told the doc of my experience at the "moldy" house and he said that anyone with chemical sensitivities will react badly to mold. I'm certain its not the primary cause of my illness.

This Dr. seems very thorough....asks a ton of questions. He had the results to my other bloodtest which was for vitamins/minerals. It looked very good. It tested various things....amino acids, fatty acids, vitamins, carbohydrate metabolism, minerals, etc. Only thing I was low in was antioxidants and folate.

He said my illness is not a physical illness...its metabollic (I think thats the word). He said even though I'm very sick....nothing will ever show up in traditional testing (yeah...I'm well aware of that ). He said Lyme, mercury or mold cause functional problems....they cause stuff to not work right in the body. Mercury interferes with enzymes, Lyme does things to the cells. I really cant remember exact descriptions he gave. I get overwhelmed...Thank God for Dave being there....to help me remember all this stuff.

He said he wont just put me on Lyme treatment right now...no antibiotics. He said if he were to give me antibiotics now I would get really sick. He said I'm too sensitive to everything and multiple chemical sensitivities = liver detox problems. He said right now his focus will be on detoxifying....that comes before everything.

He gave me some drops for this at my last appt. and amazingly they seem to help me. He gave me another list of supplements to add in...one at a time. They're all for detox purposes. Everything I try has to be added in very slowly and I have to watch for reactions. I got like 5 or 6 new things to try to take.

I gotta call and make an appt for the electronic testing tomorrow...I wanna get it done asap. I dont see the Dr. for 4 more weeks.

I think he feels I have Lyme disease but he didnt come out and say it yet. He says the tests available arent always reliable so I think thats why he wants another test for confirmation. Its really frusterating to me because I wanna hear the words I've been waiting for....I wanna be able to say I've been diagnosed. Dave says it was very close to a diagnosis but he could see why the Dr. wants to be positive about this.

I told him about Kaiser not testing me for Lyme 2 years ago...when I asked them to. He said they NEVER diagnose Lyme.

He said first of all the traditional Dr.'s will never use Igenix and instead use labs that are way less sensitive and the results almost always are negative. He said even if a Kaiser Dr. were to get a positive Lyme result they would still call it negative and they simply just dont diagnose it. I believe it...having been a Kaiser member. They laughed at me when I wanted to be tested for Lyme. They told me noone in this area gets Lyme.

I told the Dr. I'm eating ice cream....and lots of it.

He was asking me if I crave sugar....I told him no....just ice cream. He was going over my diet.....telling me ice cream is the worst thing possible for me right now. No sugar, wheat, dairy, etc. I told him I avoid everything but ice cream actually makes me feel better and I'm less sensitive to chemicals when I'm eating ice cream. He said he would never advise that someone eat ice cream but he also says we should listen to our bodies. I took that as a green light for ice cream.

Dave says thats not quite what the Dr. was saying.....but thats how I heard it.....ice cream is good for me.

So thats about it....I probably have Lyme Disease but Dr. is proceeding with caution and starting out with detoxification....preparing me for Lyme treatment if needed. I guess this would be called a "first step" in treating the Lyme.

I still cant believe I tested positive for Lyme Disease. How crazy is that??

Even though I had suspected it....I'm still kind of blown away.

[DingoGirl]

RACHEL....oh my god. Am sitting here, trying to process this over my rice pudding.

OH MY GOD???!!!! I guess I"m both....ecstatic, and only slightly devastated for you. Kind of in shock.....I think I'm more happy for you than anything else!!! Is this the ANSWER???

am a bit flummoxed and I am out of words!! I do think this is really good news....not OFFICIAL but I think this is what is wrong.....

[rinne]

Rachel, I'm glad the computer is working.

I'm amazed too, I never would have thought when I joined this thread that you would be looking at Lyme or that I would either.

From what I have read your doctor thinks much the way the doctor I am going to see thinks. It makes sense to me that detoxification is the first step.

I know this diagnosis is not 100% at this point but it seems very close, I hope this will mean that you are on your way to wellness.

[Rachel--24]

am a bit flummoxed and I am out of words!! I do think this is really good news....not OFFICIAL but I think this is what is wrong.....

Susan....I was the same way coming out of there....flummoxed and out of words!! I think its good news too! Well....not like Lyme is the greatest thing to have but WAY better than "not knowing". I was confused coming out of the appt. Dave was saying he was happy for me and I was just like "I dont think I got diagnosed."

He said it was close enough. I think its a huge step in the right direction.

OMG...I think I drove Dave crazy...I kept asking him "Do you think I have Lymes??" over and over and over again.

From what I have read your doctor thinks much the way the doctor I am going to see thinks. It makes sense to me that detoxification is the first step.

Rinne....they are probably similar. He said that antibiotics arent for everyone....especially those who are highly sensitive. He said there are lots of other treatments for Lyme. He knew about the salt/vit c protocol too. He mentioned other stuff but I forgot them all. He told Dave thats why he was there....to remember the stuff that I would forget as soon as I walked out of the room. He says short term memory loss is always a problem with chemical sensitivities and metabollic problems. Yeah...I can vouch for that!

[rinne]

What were we talking about?

[DingoGirl]

What were we talking about?

I feel the same way...in fact have to go back and read Rachel's post to even remember what it said.....

great picture Rachel - - is that "back when you were fierce?" Looks like you can be there again!

[Judyin Philly]

WOW RACHEL.

WANTED TO WAIT TILL LATER TONIGHT TO SEE IF YOU POSTED AND NOW TOO TIRED TO COMMENT.

THE LYMES MOLD AND MURCERY ALL SOUND SO CLEAR TO ME.

I HAVE BLACK MOLD ON MY KITCHEN CEILING..$10.000 LAST SUMMER TO REDO LEAKING BATHROOM ABOVE KITCHEN CEILING AND NEW CEILING AND PAINT ETC.

NOW I MOP THE CEILING WITH BLEACH.

I ALWAYS WONDERERED ABOUT MOLD AND THE ICE CREAM CRAVE IT EVERYNITE AND HAVE BEEN HAVEING FOR 2 WEEKS. MAKES MY STOMACH CALM DOWN NOW. COULDN'T EAT IT FOR MONTHS.

WILL WRITE MOR ETOMORROW.

GLAD YO UHAVE ANSWERS BUT SORRY IT'S PROBABLY LYME UNLESS HE CAN 'FIX IT'

NITE

JUDY

[AndreaB]

Wow Rachel.

I'm glad that you got an almost positive diagnosis of Lyme so you can move forward with treatment. I'll be very curious as to what this other test shows as far as the mercury and other stuff too.

Tell Dave thank you from me for being there for you.

Are you still taking the keto?

[rinne]

The way my stomach is feeling I could eat ice cream right now, fortunately there is none in the fridge and I am way too lazy to go out.

Judy, your mold story does not sound good. Have you been tested?

Susan, I wonder about Lyme and you, just as I wonder about a number of us here who have been sick for too long and with so many symptoms.

I have been thinking about the various symptoms for Lyme. I kept reading that neck and jaw problems were common with Lyme and I would think but that's not me and then yesterday I remembered that about two years ago I went through this several month period where I had neck pain all the time. It was when I was seeing the chiropractor and I thought it was related to a car accident but now I wonder. It seems to me that Lyme comes with brain fog and that through that fog it is hard to make connections to the global picture of our health, it is like we fill in the blanks with our own reasons for why this or that problem has arisen not realizing that there is a cause underneath it all. Then when it becomes critical and we begin to seek help we are referred in pieces for diagnosis and the longer it takes for an accurate diagnosis the more we keep adding illnesses or other manifestations of how our body is failing us.

I have heard of frustrations with Kaiser before and this does not surprise me because our system is precisely the same. It seems that unless we are proactive about our own health care we are subject to a system without accurate diagnostic tests. It is unusual for Canadians to pay for their own health care, we have been sold on "free" care and I have friends who are upset with me for going off to have these tests. They think I am paranoid for not trusting our medical system to diagnose me and that by paying for my tests I am undermining the whole system. I say it is not "free" if my health is destroyed. I also know they have done absolutely NO research into Lyme.

[nikki-uk]

Rachel, (I think) I'm pleased for you!

Your getting closer all the time to getting some answers-and as you say it would be better to know you have Lymes than not knowing what the hecks wrong

Soo,what does the electronic test involve?........