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The Lyme Disease Thread

CarlaB

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Rpm999 Contributor
Rpm999
Posted

it's definite if it was positive right? must be something strong for it to, but wow i knew i wasn't going crazy with my 30 million symptoms :lol: i guess there

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dlp252 Apprentice
dlp252
Posted
it's definite if it was positive right? must be something strong for it to, but wow i knew i wasn't going crazy with my 30 million symptoms :lol: i guess there

I don't here too often of doctors saying it's positive if it isn't. :) Usually, one would have the opposite problem...they would say it wasn't sometimes even if it was positive. :P

Rpm999 Contributor
Rpm999
Posted

no not the doctor, i mean the test, cause it isn't the big fancy igenex one

CarlaB Enthusiast
CarlaB
Posted
  • Author
holy poop, lyme came back positive....like i said, i just know the test is a western blot one but it wasn't like it was a false negative or anything so i guess i definately have lyme, or something similiar

Congratulations on a diagnosis!!!!!!

Yep, if it came back positive and you have symptoms, it's positive. It's false negatives you have to worry about! You have a lot of work ahead of you, but at least now you know the nature of what you're fighting. Keep us posted!

dlp252 Apprentice
dlp252
Posted
no not the doctor, i mean the test, cause it isn't the big fancy igenex one

Even MORE SO then, lol. The Igenix is usually the more sensitive, so if you've got a positive test by another method then you can be sure you have it.

Rpm999 Contributor
Rpm999
Posted

horray! it's crazy because i don't remember any bite, and never have pulled a tick out in my life...so almost every person with lyme has heavy metals i hear? how does that work, do infections have some sort of strange chemistry with them? glad lyme came up because it seems like everyone with lyme has other issues cause of it so i'm sure treating/finding out all these things will be weight lifted from my chest

CarlaB Enthusiast
CarlaB
Posted
  • Author

I am convinced that Lyme does not exist alone. After all, it weakens the immune system, so other problems are bound to be there, how can they not be?

Everything you do to take more of the burden off your body will help.

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truthsearcher Rookie
truthsearcher
Posted

Rpm999,

Just wanted to chime in and say I'm glad your getting to the root of the problem. It was a relief to me as well.

I'm just waiting till March to see the LLMD

April,

No I don't test well for Apple pectin, the stuff just plugs me right up.

I take all that you listed except for the Molybedenum, and NAC.

I juice just about everyday as well :D

A note about my kids....

I had their blood drawn today. They handled it very well.

Bad news, I did not realize the lab did not spin the blood before giving it back to me to send Fed Ex.

I called IgeneX..... they said maybe they could spin it out. Otherwise I have to get two more kits and redo UGGGGGGH.

Let's hope it will spin out. THey said they would not charge me for two more kits but would have to pay for the Fed EX shipping. I was like OHHHHH NOOOOOOOO after I realized they had spinned my blood in November.You would think the lab should have known this ??????

So...... A WARNING for all who get the Western Blots.... Make sure they spin your blood before you leave that lab.

Take care everyone.

Rpm999 Contributor
Rpm999
Posted

i think i have most of this figured out...i believe i had lyme for a while, and that bad attack i had weakened my system severely and allowed lyme to sink in...before i had that attack, i had mini ones which i should have went to a GI for because it was throat swallowing based which i can't see being complicated, and me being careless led up to a big one that wasn't so easy...before i had the attack, nothing bothered me, i had a very strong immune and was fighting off lyme probably, but it all went downhill when my system became distressed...almost everything bothers me now and rachels story sounds so similiar...the root of the problem is the key plus when you're immune has gone to hell, allergies/intolerances always come up...it reminds me of when i was younger, everything bothered me but when i cured my severe athsma, it all went away because it caused immune distress...i believe a lot of people on here have a deeper problem, because what's the hardest things on your system? gluten, dairy and soy..when your immune is having problems because of sickness, what do you think will give the most issues? it all makes sense, but i know some people have had issues with those things constantly, but before i was sick luckily nothing bothered me in anyway so i think it's all because of what my immunes gone through and the attacks allowed, then lyme allowed (parasites, infections, ect.)....a lot to juggle but maybe it's good in a way when you tie it all together...it's all a detox problem too i'm sure which it seems like lyme always gives and just makes it all hard to handle and get rid of and that alone throws off your body chemistry...what do you think carla? i just don't have natural food allergies/intolerances and i know it, the pieces just didn't fit and thankfully i've stood asking questions and found out a main cause...when your body goes to hell that bad, there's always something hidden going crazy i bet...you can eliminate all you want, but why when something simple could be causing it all? i think we all underestimate how complex the immune can be and want to think it's all simple answers, and suffer in ways because of that...i feel bad for people stuck on strict diets and suffering, but oh well just some random thought :D

and what do you mean spin your blood?

truthsearcher Rookie
truthsearcher
Posted

Rpm999,

Spinning the blood separates the serum or plasma form the the whole blood sample.

If it is not spinned the sample will start to coagulate and get thick and clumpy.

I really don't know if the samples I sent are going to be viable when Igenex gets them.

I'm hoping for the best, I want to spare the kids from getting poked again. Again I don't understand why the lab couldn't figure it out, and I was so caught up in not having the kids freak out about getting poked that we practically ran out the lab door when we were finished.

Oh well. Live and learn. I can't be too upset or my Lyme really flares.

Rpm999 Contributor
Rpm999
Posted

guess i don't have to worry since they came positive but yeah, silly mistakes people make can screw it all up huh?

CarlaB Enthusiast
CarlaB
Posted
  • Author
...what do you think carla?

I think you really seem to have a good handle of what's going on with you. :)

I recently viewed online a talk giving by Dr. B. He said that on it's own, babesia will clear out in about 6 weeks. Bart is also self-resolving. However, when Lyme weakens the immune system, these two diseases cause major problems.

I know that stress has triggered my Lyme symptoms each of the four times it has really disabled me. The other three times more or less resolved themselves with eating right and heavy exercise.

I think the immune system is designed to handle this, but with all the burdens put on our systems today, it can't.

I also agree that many people on here, the ones who do not have celiac disease, might have something else going on underlying their intolerances, ie their intolerances are a symptom. At least that was the case for me.

I think that as you are working on it from all angles -- Lyme, parasites, metals, toxins, etc. -- you will get better.

dlp252 Apprentice
dlp252
Posted

Yeah, I don't know when I got lyme either, but I do believe severe stress in 1995-1996 caused everything to be too much for my immune system!

truthsearcher Rookie
truthsearcher
Posted

Well said Carla

And like Donna, whenever there was an upheaval in my life Lyme took over.

I think eating as clean and healthy as I can and not letting stress effect me keeps my lyme symptoms (tolerable).

I believe I've had lyme for a long, long time and I'm only 36 but when I got pregnant at 27 everything changed for me, I can't even handle misplacing a pencil now.

aprilh Apprentice
aprilh
Posted

I got my blood taken today for the lyme tests. They send off to igenex. I asked the lady what testing they do but I didn't know what I was talking about to be specific. The testing was $400 but someone said that probably didn't include ???

I guess I'll know more when it comes back. Does anyone have an idea how long for igenex to return the results?

Rpm999 Contributor
Rpm999
Posted

and what's the way to find out if you definately have celiac perminately by genetics or whatever? i'd be shocked if i did since i had no issues before, i had some blood test and it just came up slightly abnormal...everything bothers me which would make sense with what my immunes gone through

CarlaB Enthusiast
CarlaB
Posted
  • Author

Well, all my celiac tests were negative, but I felt better on the gluten-free diet and would react when I ate gluten. So, I did not test positive for celiac. If someone tested positive, that would mean they had it for life.

Which blood test came up abnormal for you?

dlp252 Apprentice
dlp252
Posted
I got my blood taken today for the lyme tests. They send off to igenex. I asked the lady what testing they do but I didn't know what I was talking about to be specific. The testing was $400 but someone said that probably didn't include ???

I guess I'll know more when it comes back. Does anyone have an idea how long for igenex to return the results?

I'm not sure what all that covered. I know I didn't spend $400 for the western blots (only $190 in California, but that was last year), but I know it's more expensive in some areas and the price may have gone up. I think the co-infections testing is a lot more than that, so I'm thinking it doesn't include that. Probably the two western blots, maybe a PCR test, and I'm not sure what else.

dlp252 Apprentice
dlp252
Posted

Oh, and maybe they took extra blood for another kind of test? I had 7 vials drawn...some of that went to Igenix and some went to other labs for mold toxicity testing, etc.

aprilh Apprentice
aprilh
Posted
Oh, and maybe they took extra blood for another kind of test? I had 7 vials drawn...some of that went to Igenix and some went to other labs for mold toxicity testing, etc.

What kind of mold toxicity testing did you do? This may be something I need to do.

Rpm999 Contributor
Rpm999
Posted

i'll have to find out...but even if it came up, it could just be because of everything else going on, right? isn't the only way to find out if it's genetic through something on enterolab? i assume it's attacking my body and bothering me, but i want to know if it's the genetic disease that i'm now stuck with, which like i said would shock me...but do you have any clue what the blood test they do tests for? never really found out

aprilh Apprentice
aprilh
Posted
i'll have to find out...but even if it came up, it could just be because of everything else going on, right? isn't the only way to find out if it's genetic through something on enterolab? i assume it's attacking my body and bothering me, but i want to know if it's the genetic disease that i'm now stuck with, which like i said would shock me...but do you have any clue what the blood test they do tests for? never really found out

You could retest yourself once you deal with lyme and your underlying issues. You will be surprised how many people are gluten intolerant because of those type issues and not necessarily because they are "celiac". A Year ago I could not handle the tinyest bit of gluten and now after healing leaky gut, treating a systemic candida overgrowth (fungal infection) I can handle "some" gluten now.

I predict that once I find out IF I have lyme and also deal with the underlying toxicity issue, I will be back to eating a "normal" diet.

dlp252 Apprentice
dlp252
Posted
What kind of mold toxicity testing did you do? This may be something I need to do.

I'll have to look up the info later...all my papers are at home. It was a blood test that tested for the 3 biggies, aspergillus, and I can never remember the other two, lol. I think it was measured in antibodies, but I can't be sure. I'll also look up the lab.

i'll have to find out...but even if it came up, it could just be because of everything else going on, right? isn't the only way to find out if it's genetic through something on enterolab? i assume it's attacking my body and bothering me, but i want to know if it's the genetic disease that i'm now stuck with, which like i said would shock me...but do you have any clue what the blood test they do tests for? never really found out

I think you can have other types of genetic testing done, just not sure where. I had mine through enterolabs, it was a cheek swab. I am not sure if I am Celiac or not because when my conventional testing was done I had already been gluten free for several months, and before that was eating low carb, so wasn't getting a lot of gluten anyway. My doctor was reluctant to officially diagnose me with celiac, and I'm glad now that he didn't.

I do have a gene, so I suspect the possibility is always there, but I'll never know for sure. I did see improvement on the gluten free diet, just not enough. My hope though, is that when the rest of the health issues are taken care of, I'll be able to worry less about cross-contamination issues, and maybe have a little "treat" once in a while. I'll probably not ever go back to eating gluten on a regular basis though.

Ridgewalker Contributor
Ridgewalker
Posted

Quickie update...

Well, I had about convinced myself that I had nothing to worry about. (My rash was probably pinworm, I'm not horribly ill, etc.) Now I'm on antibiotics for a sinus infection and two symptoms that began over the summer- joint pain and neck stiffness/pain- have gotten significantly worse.

It may mean absolutely nothing more than a drop in barometric pressure, but it's enough to make me worry again. Argh!

CarlaB Enthusiast
CarlaB
Posted
  • Author

Sarah, that can happen if you have Lyme ... symptoms can worsen when put on abx. It's stirs up the disease, plus the die-off can cause the symptoms.

Even if someone has the celiac genes, it still does not mean they will ever develop the disease. Thirty percent of the population has a celiac gene, but only 1 percent has celiac disease.

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