The Lyme Disease Thread

[dlp252]

Welcome Scotty...I hope you find some answers soon!

I had TONS of allergies when I was tested in 2002...just about everything they tested me for. I "knew" even back then that that wasn't normal...you don't go from having zero allergies to being allergic to everything overnight, lol. I also "knew" that the allergy shots weren't going to do a lot of good in the end because I had a feeling that "something" was causing it. It just took me 4 years to find out what. My allergies have greatly improved and am no longer getting the shots, and I believe that's because we finally started addressing the causes. Cutting out gluten and casein took a huge burden off my body, and finding out about lyme, metals and mold were also major pieces of the puzzle.

Foodwise, I'm not quite as limited as you, but my list got pretty small there for a while. I'm finally able to add a few things in as long as I don't eat them all the time.

Just wanted to give you a little hope...lyme may not may not be your answer, but don't give up trying to find it. You could also have secondary issues which cause some of your symptoms (like I do with mold toxicity and metals).

[CarlaB]

Welcome, Scotty!

I have been thinking about you the past few days, wondering how you were doing.

As you know, I was in the same boat ... pretty much all food made me feel bad .... gluten more so than others. I found what I could eat and stuck to it until I got better. Now I eat anything without problems.

There are no lyme docs in Ohio. I'm not sure about Michigan. Most people from here either travel to Missouri or PA. However, if you're going that far, I think I'd just go all the way to NY to see mine. I know a lot who see the doc in PA and end up looking for someone else or sick for a long time .... I'm sure he's made people better, too, but that's what I've seen.

I hear good things about the Missouri doc ... but he's not as aggressive as mine .... depends what you're looking for. Some prefer the more laid-back approach and it does work for some.

You might post under seeking doctors on Lame Advertisement. There are people there who have lists of all the Lyme docs and can give you a referral.

I hope you find answers soon.

[truthsearcher]

Hi Scotty and welcome. I'm in the "thick" of it as well still eating limited foods until I get my metals and Lyme addressed in the proper manner. So far been using a holistic MD and Chiropractor to get through the days and feeling kinda lost doing it. But help is on the way in about 2 weeks.

I am seeing Carla's Dr. and I live in Upstate NY, he is highly recommended by many.

I have a great TMJ Doc in Ohio if your looking

I also wanted to comment on my kids labs.... I was looking over Dr. J in CT criteria for lyme and both of the kids would not meet criteria for a Lyme diagnosis.... so I'm gonna wait and ask Dr. H what I should do and go from there. I would be overjoyed if my kids are spared from this horrid disease.

Hugs,

Laurie

[CarlaB]

Laurie, that's a great idea ... ask Dr. H if he thinks they need to be seen. Be sure to take the test results with you (and maybe have a simple symptom list ready, too).

[scotty]

Hi Scotty and welcome. I'm in the "thick" of it as well still eating limited foods until I get my metals and Lyme addressed in the proper manner. So far been using a holistic MD and Chiropractor to get through the days and feeling kinda lost doing it. But help is on the way in about 2 weeks.

I am seeing Carla's Dr. and I live in Upstate NY, he is highly recommended by many.

I have a great TMJ Doc in Ohio if your looking

I also wanted to comment on my kids labs.... I was looking over Dr. J in CT criteria for lyme and both of the kids would not meet criteria for a Lyme diagnosis.... so I'm gonna wait and ask Dr. H what I should do and go from there. I would be overjoyed if my kids are spared from this horrid disease.

Hugs,

Laurie

whats a TMJ?

[CarlaB]

whats a TMJ?

It's your jaw joint.

TMJ Disorder is when you have problems with your jaw ... clicking, pain, etc.

[truthsearcher]

I am sorry Scotty. I was just joking about the TMJ Dr.

It just seems we have to travel all around the country to see the right Drs.

Be Well

[scotty]

well i hope that was in good humor. i am a little slow at times and not one for (comprehending) jokes when i feel like i am dying.

i got blood drawn today specifically for Ige ANA IgA anti-gliadin and IgA anti-endo---somehtingor other cant read the writing here of the doc. seen the allergist. seems that apple was a 2+ as well as sesame and both dust mites were 4+. and evrything else was fine --on the surface anyway. did not have regular allergy tests done like ragweed or pollen but doc was not concerned and neither have i ever been. mmmaybe in the follow up. he is going to scrounge up my endoscopy from years ago to see exactly what they tested for and give a response for the bloodwork. he seemed more thourough then other docs i had seen, but recommended i try a lamb-rice diet....? and thinks i might have eosinophilic gastroenteritis. i'm not seeing it and just took two seconds to read it. i had a CT once that looked nothing like the photo on wikepedia. he suggested i try tablespoons of stuff i am not tolerating to see if i can tolerate that much, just to see what happens....for the record: i had to cut lamb due to the awful candida it produced. i mean is it wierd that safe foods are giving me candida at times, or that clogged greasy feeling. my tongue is white and he sadi nothing about it. said my white blood cell count was not terrible but low since i showed him bloodwork from last week. this caulflower is starting to not work anymore. is giving me candida. i got an email out to the lyme test people...igenex and a name of Dr. J in Pa. (Dr, J J? are you serious?! i'm not sure which test to order. not sure how to go about this. i'm going to be talking with my regular doc about him referring Enterolab, will ask then if he might do me the same favor for igenex....

[CarlaB]

Scotty, I'm glad things are progressing for you.

If you have a white tongue you must have candida pretty badly. Have you ever tried Nystatin or Diflucan? Candida can produce many of the same symptoms as Lyme Disease.

Also, you may have heavy metal toxicity .... often your body is trying to protect itself from heavy metals, so allows a candida overgrowth ... many time both of these issues go hand-in-hand with Lyme.

I, personally, did not have a candida problem and had a small heavy metal problem, but there are others here who had bad issues with candida and heavy metals in addition to Lyme.

Research Dr. Klinghardt .... if you Google, a lot will come up. I think some of the stuff you see will ring a few bells for you.

BTW, I had NO sense of humor at all when I was sick ... no one could joke with me at all ... I just couldn't comprehend it.

[scotty]

Scotty, I'm glad things are progressing for you.

If you have a white tongue you must have candida pretty badly. Have you ever tried Nystatin or Diflucan? Candida can produce many of the same symptoms as Lyme Disease.

Also, you may have heavy metal toxicity .... often your body is trying to protect itself from heavy metals, so allows a candida overgrowth ... many time both of these issues go hand-in-hand with Lyme.

I, personally, did not have a candida problem and had a small heavy metal problem, but there are others here who had bad issues with candida and heavy metals in addition to Lyme.

Research Dr. Klinghardt .... if you Google, a lot will come up. I think some of the stuff you see will ring a few bells for you.

BTW, I had NO sense of humor at all when I was sick ... no one could joke with me at all ... I just couldn't comprehend it.

i just had the impression of getting a really good doctor for something. i guess i will if i have jaw problems. now this metals thing...has always intrigued me in that i dont know where i am getting metals: for instances, bottled water, organic everything, baking soda to brush, mineral salts deoderant...let's see what else...i'm not really taking in metals far as i know. how do you i avoid or recognize where i am getting this. will research the doc

[dlp252]

I had terrible TMJ problems...the pain was so bad that all I could do was just sit there and cry. Oddly the pain went away when I had my amalgams taken out. It's been a year now and I haven't had more than a mild aching since then. My jaw also doesn't "click" anymore when I open my mouth. I used to click all the time.

[CarlaB]

Scotty, do you have silver fillings? That is a primary source for mercury. Fish is another mercury source, especially big fish like tuna.

You can get metals from cigarettes (cadmium), cans, aluminum foil, water, food, chocolate, pollution, etc. Unfortunately, we can't avoid metals.

You know, chlorella might be something that might make you feel somewhat better. It absorbs toxins. You'll still need to find out the root of your problems, but it might give you some relief.

I was toxic in lead. I have NO IDEA how I got toxic in lead!!!

[scotty]

Scotty, do you have silver fillings? That is a primary source for mercury. Fish is another mercury source, especially big fish like tuna.

You can get metals from cigarettes (cadmium), cans, aluminum foil, water, food, chocolate, pollution, etc. Unfortunately, we can't avoid metals.

You know, chlorella might be something that might make you feel somewhat better. It absorbs toxins. You'll still need to find out the root of your problems, but it might give you some relief.

I was toxic in lead. I have NO IDEA how I got toxic in lead!!!

i think i have one filling. not sure what it is made of....? have not been regularly to a dentist though---how do you measure toxicity? man i have so much to research can't i just wander through life and smell the flowers--i mean is there tests like allergy tests? is there toxicity testing? i have seen this mentioned quite a bit on the site. i used to eat onlt tuna and rice because they were the only things that went through smoother. tuna now makes my heels hard and my body stuffy makes me urinate almost right after eating in this sort of grumbly hunger growling sensation. does not burn clean. which the caulflower is starting to do, which all my foods do eventually, so i stop eating them, but to a point now i dont want to go back to anything. thats not good with fish!! thats all that i have in the fridge right now!! but i tell you poultry and ground beef, this lamb, even this rice protein mix, heck ostrich paties, they all do something negative........i have been down those roads......maybe a blender, puree all my meals and eat like a baby; same quantities even

[CarlaB]

If the filling is a silver color, then it has mercury in it.

Many have fillings and never get sick, but when the immune system gets more than it can handle, anything causing the toxcity becomes an issue.

Heavy metal toxicity is measured by a provoked urine test ... DMPS (a chelating agent in a capsule) is given, then a urine test is done.

LLMD's will do this test. My LLMD tested me for all the "stuff" that goes along with having Lyme, or that might be mistaken for Lyme.

[scotty]

If the filling is a silver color, then it has mercury in it.

Many have fillings and never get sick, but when the immune system gets more than it can handle, anything causing the toxcity becomes an issue.

Heavy metal toxicity is measured by a provoked urine test ... DMPS (a chelating agent in a capsule) is given, then a urine test is done.

LLMD's will do this test. My LLMD tested me for all the "stuff" that goes along with having Lyme, or that might be mistaken for Lyme.

maybe i can get an LLMD to consult over the phone anyway you look at it i need to contact one. and order the tests. i'm not sure in which order; soon as i hear from igenex i will order them...could you intrepret them? will they send me results or my doc?

[CarlaB]

You can have IGeneX send you the test, but you will need a doctor to sign for it.

We can help you interpret the test if you have a non-LLMD sign for it.

[scotty]

You can have IGeneX send you the test, but you will need a doctor to sign for it.

We can help you interpret the test if you have a non-LLMD sign for it.

so just do the Western Blot one? it seemed both of the tests (maybe there is more than 2...anyway) are blood serum tests...i suppose some instructions will given by igenex. what does it mean sign for it? should i have them send it to the doctor? i have to talk with the doc anyway and maybe i can coordinate all this with him. i can't imagine what he will say. i dont really care i guess. it is nice to be having tests done that relate at least. i guess i intend to have an LLMD at least give me an interpretation of the results; that seems the best. i will have to be contacting one.

[CarlaB]

If your regular doctor will do the test, you need both Western Blots done. But if you're going to go to an LLMD anyway, you might just wait and have him do the tests.

[scotty]

If your regular doctor will do the test, you need both Western Blots done. But if you're going to go to an LLMD anyway, you might just wait and have him do the tests.

OK so i wait and see a LLMD....they can do those specific tests and i dont order the ones through Ignenx? my understanding is they are the best of the best. will i get the same from an LLMD? or do i still order them but take them to the LLMD instead?

[CarlaB]

You can do it either way, scotty. Most good LLMD's will use IGeneX.

I had the test kit sent to my house, had my local doctor give me the blood test, then I took the results to the LLMD, who ran more tests (coinfections, heavy metals, cortisol, thyroid, etc.). I was able to start meds right away because I already had the test results from the Western Blot, so that was an advantage in doing it this way

[scotty]

You can do it either way, scotty. Most good LLMD's will use IGeneX.

I had the test kit sent to my house, had my local doctor give me the blood test, then I took the results to the LLMD, who ran more tests (coinfections, heavy metals, cortisol, thyroid, etc.). I was able to start meds right away because I already had the test results from the Western Blot, so that was an advantage in doing it this way

ok thanks a bunch. i did not realize the thing was so xpensive. they emailed me back with a price of 450 bucks!! saying it is the 6050 panel, whatever that means. not good to go bllind into this. ugh the research is worse than the symptons

[CarlaB]

Scotty, get the two Western Blots ... they will be around $200.

[confusedks]

Actually Carla, the western blot is about $250. It has gone up in price.

Scotty, the co-infection tests are SUPER expensive. But, don't worry about that for now.

[scotty]

OK--two Western Blots I can afford.....get this--i have gone 180 here! i feel so much better today then i have in weeks. grant it i have to cut this and that, i'm going to pick up some more caulflower just to see my reaction since i think it was Tuna (which is wild that you mentioned the mercury thing Carla--kind of reminded me that i had eaten it--see i used to eat cans of it, and i tried a fillet) that i had couple days ago, finally started to attack or whatever and why it seemed like caulflower was not working anymore. got to give that another shot. as well last week had "regular" cucumbers since i was at krogers and did not care. those had to mess me up. i had "organic" one today so we will see--but i can just tell you know. i feel pretty good today. i was also eating ground beef last week. this stuff i been continually eating since it gives me energy, but at the same time i think it the source of my recent rashing and bladder pain, it makes the tip of my well pinched sensation--too much detail maybe.....not saying i am cured, but what a relief today is. i have not felt this in over a month or two. that sense of healing. last night i dreamt i was coordinated again and playing basketball again, quite well mind you; instead of feeling like running in a swimming pool and fighting sleep....is that weird. i have dreams where i am fighting to stay awake (used to; still do time to time). i feel like i can wait to eat....and that when i do it will feel real good like i need and it.....well it feeds me. we'll have to see how lunch goes. i'm not really even hanging on its arrival. this is what happens. i think this inspires me to restart my food diary to help pinpoint problem foods. i wonder if things that are working here will build on me again? i wonder how long this will last again? this is why i hesitate to try things and back myself into corners eating the same things. i just want stuff to work for awhile, to get THIS, this sense of healing...so of course i can have confidence to try things that might not work.

once the doctor calls (hopefully i can speak directly to him--doubt it though) i will mention the Lyme tests to set the best possible plan. maybe i will just set another appt.

what a trip, i'm really beginning to believe certain foods effect me differently when certain "bad" foods or foods that just won't work are going through me. i have no clue why i can't handle a lot of stuff though and most times where my problems are coming from; i have no idea how to control any of this, yet this is all happening right there inside of me

[aprilh]

Got my Igenex Test Results back! I need help deciphering:

IGM Results:

**23-25 kda = IND

**30 kda = +

**41 kda = ++

**83-93 kda = IND

IGG Results

**39 KDA = IND

*41 kda = +

45 KDA = +

58 kda = +

Multiplex B Burgdorferi:

genomic = negative

plasmid = negative

Okay - so whats the deal?!!!