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The Lyme Disease Thread

CarlaB

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jerseyangel Proficient
jerseyangel
Posted

Great--I'll let them know.

  • 2 weeks later...
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lilypad23 Explorer
lilypad23
Posted

I am starting to feel like a hypochondriac, but I think this might be a possibility. I have two dogs and they have ticks and I constantly get bitten by ticks. I mean, practically every day I find a tick on me. I keep my dogs bathed and all of that, but they still have them. Its really annoying :angry: . Anyways, I was looking at the symptoms and I have a bunch. I don't know if they're just caused by gluten intolerance or if I could have this, but I'm starting to get a little worried because lately it seems like every day I'm just getting worse and getting back to exactly where I was before I went gluten free. When I first started the gluten-free thing, I felt fabulous, better than I had felt in years. That only lasted for a couple of weeks though and then I gave up dairy and soy because Enterolab confirmed that I was intolerant of those things and I felt a little better. Then I was still sick so I gave up nightshades and still didn't feel better. So, then I gave up rice and corn about a month or more ago and got a little better, but now I'm getting worse again. I figured out that I was possibly getting glutened when I went to work because I worked at Pizza Hut so I quit my job. However, I have not gotten better and in fact have really gotten worse. Everything I eat makes me sick, but if I don't eat, I get even weaker than usual. Sometimes I feel like I'm like 80 or something and I'm only 21. I can't concentrate on really anything and I constantly have floaters in front of my eyes, especially when I'm outside. I don't know if I can deal with this anymore. Maybe I'm just a hypochondriac and everything is all in my head. What do you guys think?

dlp252 Apprentice
dlp252
Posted
Maybe I'm just a hypochondriac and everything is all in my head. What do you guys think?

I think this sounds familiar! I don't even live in tick country, so never thought it could really be a possibility, but I sure enough have it. Your story is also familiar to many of ours because we weren't getting better after eliminating so many things. I think with your history should you should definitely look into it. Make sure you do your testing through Igenix and if possible see a doctor literate in lyme (LLMD).

You can also drop by the OMG thread (the one that's over 1600 pages long, lol), in the leaky gut section. A lot of us there have lyme and we discuss it along with the many other things that many of us have going on, including leaky gut. :P

CarlaB Enthusiast
CarlaB
Posted
  • Author

I would be highly suspicious of Lyme! Anyone who is constantly being bitten by ticks and is chronically ill should definitely be checked out!

Most of us with Lyme have felt like a hypochondriac and have even been told we are. You are not crazy. Please see an LLMD and get properly diagnosed. If you don't have it, an LLMD will be able to tell you what you do have because they do a very complete differential diagnosis .... but with all the known tick bites, Lyme is highly suspicious.

You can get better from this and feel good again. I've recently turned the corner and feel more "good" than "bad". :)

AndreaB Contributor
AndreaB
Posted
Maybe I'm just a hypochondriac and everything is all in my head. What do you guys think?

No you're not a hypochondriac.

Lyme sounds highly suspsicious in your case.

I agree with what Donna and Carla have already said.

I'm one of the few on the OMG thread that doesn't have lyme and I second the invite. :)

lilypad23 Explorer
lilypad23
Posted

Thank you guys very much. I really appreciate the advice. Every time I tell my mother how I'm feeling, she just says that it is my nerves and I'm a hypochondriac. I just don't think that nerves could cause this many problems or cause me to react to everything that I eat. Maybe I'm wrong, but I know my body and I know when something isn't right and right now things in my body just don't feel right.

But, does anyone know about how much the Igenex tests cost and how to order them? Will they send me the test to take at home or do I have to get the doctor to do it? Also, how do you find an LLMD? I live in Texas. Thanks again.

confusedks Enthusiast
confusedks
Posted

Caraline,

You can post in the "seeking Doctors" section on Lame Advertisement (or com). There is a wealth of information on that site. Good luck! I hope you get some answers. Also, Carla and others will hopefully jump in with more answers to your other questions.

Kassandra

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mftnchn Explorer
mftnchn
Posted

I add my voice to these others about checking out lyme. Also checking out heavy metal toxicity and all types of parasites is important. And while you are healing it is possible that you will have to eliminate a bunch of stuff that you don't tolerate. Something is behind all of these sensitivities.

As I understand it, you can order the test kit yourself from Igenex, and then take to your doctor as ask them to use that lab for the test and to test you for lyme.

Also certain times of the month are apparently better for the testing...

dlp252 Apprentice
dlp252
Posted
But, does anyone know about how much the Igenex tests cost and how to order them? Will they send me the test to take at home or do I have to get the doctor to do it? Also, how do you find an LLMD? I live in Texas. Thanks again.

The Western Blots (there are two) run about $190 (for the both of them). My LLMD had the tests already so I didn't have to order one, but I think Carla ordered hers from Igenix then had one of her doctors draw the blood and sign for it.

I think there are links to Igenix, lymenet and a link to look for doctors on the first page or two of this thread...if not I'll post them later. Lymenet has a section for "seeking doctors" that you can try. I actually found mine because I live in the same area as Rachel, so I just went to hers, lol.

I just want to echo what Carla said...my LLMD didn't automatically assume I had lyme, he looked for a BUNCH of other stuff too. I think he was almost as surprised as I was that I actually had it, lol. But he checked for my essential elements, thyroid, mold toxicity, metals, etc. Currently, we haven't even begun treatment for the lyme yet...we're still trying to get the burden off my body so I can handle it, lol.

dlp252 Apprentice
dlp252
Posted

Okay here are some links:

Open Original Shared Link (doctor referral)

Open Original Shared Link

Open Original Shared Link (the flash discussion is the message board area)

Open Original Shared Link

truthsearcher Rookie
truthsearcher
Posted

Caraline,

That 190 bucks was the best 190 bucks I ever spent. It will save me loads in the future not have to buy supplements I don't need.

I have my appt. sent for the first week in January to see the LLMD Dr. P. I was told they will do a hour and half exam, physical, history and order any other tests. The cost for the first visit is 180 dollars which I did not think was too bad considering what I paid for my first visit with a holistic MD at 300 dollars and couldn't find what was wrong with me.

I am disappointed about the testing on the co-infections though. The secretary told me that in NY state they are not allowed to test for all of them. Has anyone run into this problem before and what to you do in a situation like that?

I also wanted to say I'm sorry for not posting on the OMG thread. It's just too busy for me. I can't keep up, I get all disconbobulated sp? and get all messed up in the head. I can read one or two short posts and by the time I get to the third forgot what the first post was talking about. It's all great stuff I wish I could read it. It might be different if I could understand how to use the tools to highlight and stuff but even that is like rocket science to me most days.

take care,

Laurie

dlp252 Apprentice
dlp252
Posted
I am disappointed about the testing on the co-infections though. The secretary told me that in NY state they are not allowed to test for all of them. Has anyone run into this problem before and what to you do in a situation like that?

I also wanted to say I'm sorry for not posting on the OMG thread. It's just too busy for me. I can't keep up, I get all disconbobulated sp? and get all messed up in the head. I can read one or two short posts and by the time I get to the third forgot what the first post was talking about. It's all great stuff I wish I could read it. It might be different if I could understand how to use the tools to highlight and stuff but even that is like rocket science to me most days.

Well, I haven't been tested yet for any co-infections, but I don't think it's because it's not allowed. I think my doctor just wanted to get me in a healthier state before we did that. He was also trying to save me money I think so didn't want to order it until after we saw for sure I even HAD lyme, lol. I had some muscle testing done for that...actually had the muscle testing done first, and didn't believe it because he was the only one who said I had lyme...based on that, I went to have the Igenix testing done to prove him wrong, lol. Turns out I DO have it, so I can probably be pretty certain the co-infections he found were correct also.

Don't worry about not posting on OMG...it can be very overwhelming on a good day. I've had to take a few breaks from the board just because my brain isn't able to handle it all, so don't feel bad!

AndreaB Contributor
AndreaB
Posted
I also wanted to say I'm sorry for not posting on the OMG thread. It's just too busy for me. I can't keep up, I get all disconbobulated sp? and get all messed up in the head. I can read one or two short posts and by the time I get to the third forgot what the first post was talking about. It's all great stuff I wish I could read it. It might be different if I could understand how to use the tools to highlight and stuff but even that is like rocket science to me most days.

take care,

Laurie

Laurie,

No problem. When you're feeling better (less brain fog, etc) then you can come back to the thread. Most of us have short posts to help with the attention difficulties of the lyme brain.

CarlaB Enthusiast
CarlaB
Posted
  • Author

Laurie,

That doesn't make sense .... it's illegal? Or not covered by insurance?

My LLMD is in NY and I was tested for coinfections. I paid out of pocket. All the tests were negative for coinfections, but I was clinically diagnosed with babesia and bartonella based on symptoms and response to treatment.

I totally understand the brain thing .... on those days I just read the posts I understand and don't worry about the rest. :)

happygirl Collaborator
happygirl
Posted

Open Original Shared Link

not all tests are allowed in NY state.

CarlaB Enthusiast
CarlaB
Posted
  • Author
Open Original Shared Link

not all tests are allowed in NY state.

WOW! That's so odd!

confusedks Enthusiast
confusedks
Posted

I just wanted to say that the Western Blot is $245, NOT $190. I guess they must have raised their prices. We got the kit and I was expecting it to be $190 because that's what everyone had been telling me, but then it wasn't. I figured it was just one of the many surprised I will run into...lol.

Carla,

Isn't that weird about NY and testing?! I saw that on the paperwork from Igenex and I was surprised.

Kassandra

happygirl Collaborator
happygirl
Posted

from old igenex info (like '02)

Why is the LDA not available to New York State Residents?

New York State currently requires that we provide all information about the LDA test, including proprietary information. Because of the proprietary issues, we have not submitted any LDA documents to the New York Department of Health. We hope to reach some type of agreement in the future about the confidential nature of our intellectual property. New York State physicians, however, can use the LDA on their patients residing outside of New York, just not on residents of New York State.

CarlaB Enthusiast
CarlaB
Posted
  • Author

Well, I guess that explains why I got tested then. :)

Rachel--24 Collaborator
Rachel--24
Posted

Caraline,

I agree with everyone else. It sounds like Lyme is a very strong possibility for you given the symptoms and tick exposure.

Hopefully you can get yourself tested soon.

Laura,

Thanks for posting that info from Igenex. I knew that some tests were not allowed in New York State...but was never clear on the reasoning behind that.

Laurie,

Good luck on your upcoming appt.

Dont feel bad about not being able to follow in the OMG thread. Its a very busy thread and has been difficult to follow for all of us at various times. Eventually you will feel less overwhelmed and of course you are always welcome to join in whenever you feel up to it. :)

truthsearcher Rookie
truthsearcher
Posted

Thanks for the encouragement.

Do you all read on Lymenet much? That is where I got my LLMD referral, but find the forum confusing to get around.

What Lyme forum do you recommend for ease in reading a getting around. You would think with all the Lyme brainy people it would be very simple. :huh: But I did bookmark many of the links recommeded here and read a little each day.

Also the secretary told me to bring any pertinant records to the first LLMD appt.

Can you share anything to make the appointment go smoothly. I'm afraid I'm gonna be stuttering and have mental blocks while there and forget something really important.

I am taking my husband with me to be my second set of ears cuz it's like I hear everyother word and then forget all the rest :(

Thanks

Laurie

Ridgewalker Contributor
Ridgewalker
Posted

I find LymeNet difficult to use, as well. I wish it were set up more like this board.

Well you guys, I am utterly flummoxed now. I have seen pics of Lyme bullseye rashes that look identical to what I had when I was a kid, and now I've seen pics of ringworm that look identical to what I had. WTH???

Then I was on LymeNet, and someone had posted some pics of her rash.... and half the people said it looked like a Lyme rash, and half the people said it looked like ringworm.

I am frustrated. I am a regular blood donor- it's important to me- but I haven't done it since the Lyme possibility popped up... I would really like to donate for Christmas, for I still don't know if I dare. <_<

confusedks Enthusiast
confusedks
Posted

I agree that LN is really hard to navigate. This site is one of the best out there I think. I would also think it would be easier to deal with because lyme brains, but maybe the creator had major lyme brain when creating it? LOL

Kassandra

Rachel--24 Collaborator
Rachel--24
Posted

Laurie,

I usually have my mom with me at my important Dr. visits....but she doesnt really understand everything that is brought up.

One of my LLMD's had mailed me info. about what to expect for the first visit. He said feel free to bring a recording device since we would be going over many things (a 2 hour appt.).

It was a great idea! I got a voice recorder for like $20 and brought it with me. The whole visit was recorded and it really helped me to have that. I'll use it whenever I have any long appts where I might forget things we discuss.

I dont have too much brainfog these days...but anyone can get overwhelmed with alot of info. at once. I recommend getting a voice recorder...they're very small and inexpensive. You could call and ask if it would be ok to bring one.

I do frequently read the posts on LymeNET....I just read whats in the "Medical Questions" forum. I read whatever interests me in that one forum.

I'm sure you will do just fine at your first appt. Write down any questions you might want to ask....its easy to forget once you get there. I usually write stuff down ahead of time. Make sure you bring any labs you've had done that might be important. I bring everything I've been tested for (during this illness) and the Dr.'s make copies of what they want to keep in my file.

Sarah,

If it were me I would have Lyme ruled in or out first...otherwise I think it might drive you crazy wondering whether or not you made the right decision about donating.

You have good intentions and want to help others...thats what really matters. Its ok if you need to hold off until you figure out if you have Lyme or not. Maybe theres some other way that you can give to those in need this Xmas??

Ridgewalker Contributor
Ridgewalker
Posted
Sarah,

If it were me I would have Lyme ruled in or out first...otherwise I think it might drive you crazy wondering whether or not you made the right decision about donating.

You have good intentions and want to help others...thats what really matters. Its ok if you need to hold off until you figure out if you have Lyme or not. Maybe theres some other way that you can give to those in need this Xmas??

Rachel,

*sigh* You are right, it would drive me crazy. Obviously, the last thing I'd want to do is give someone (who's already sick!) a brand new problem to worry about.

Maybe I will call the Red Cross and see if they could use me to help pass out the donor books, and drinks and cookies.

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