The Lyme Disease Thread

[CarlaB]

Congratulations on a diagnosis!!!!!

[truthsearcher]

Just bringing this to the top for anyone.

I hope everyone is doing well.

I'm in my third week of abx and still feel the same ol crappy except the restless leg has come back with a vengence so I'm not sleeping to well. This was my biggest improvement sense the candida diet but it's gone for now. (Sob).

So I guess I'm worse but don't know whether it is a good thing or bad thing.

Also I thought 4 abx would be helping me go to the bathroom but nope ... having a bm is like moving Mt. Everest.

I do notice though I have a little sense of humor... Progress?

[CarlaB]

A sense of humor is definitely progress!!!!

Have you tried taking magnesium and vitamin C for the constipation?

[truthsearcher]

Yep just about every poop remover known to man. Mega doses of Vit C do nothing.

Milk of Mag doesn't touch me anymore.

I drink Turkey Rhubarb tea in combo with something called 3mA magnesia and this gives me at least something once a day. Thank God without it, nothing.

I really think the lyme messed with my digestion big time. I have to address that at my next appt.

Be Well

[dlp252]

Laurie, I don't always feel that feeling worse is a good sign, but for some reason when I read that some of your symptoms came back, it sounded good in your case. The antibiotics are most likely getting some of the bugs, which is stirring up the candida, so the worsening symptoms (in this case) actually sound like things are working. That's just my non-expect thought, but sounds a bit encouraging to me. Sorry about the C though!

[fedora]

Hey,

this thread is so long...no way can I read it all!

I live in the woods. My daughter who just turned seven last week had Lymes in 2002 at age one.

The good news is I KNEW it before any symptoms occured. Thank Goddess she got the typical bullseye rash about 2 weeks after getting bitten by a tick. I was watching her. She tested positive and was put on 3 weeks of antibiotics. She has never complained about joint pain(her twin brother has leg pains). She gets moody, has mouth sores, is very lean(her dad is too though). I am wondering if I should get her retested. They said if was useless right after antibiotics since she would still test positive.

Our land definately has lyme's. I wonder if I should get tested. I have been off gluten 2months and am casein free now too(that was much harder for me). I have had joint pain since 10(am now 32). Going off gluten has helped soooo much. I definately am still figuring it all out.

My son's pain is in the shin-not the knee. I don't know what to do with them. I may take them off gluten, but wanted to see what the lyme's thread had to say about our risk factor. There is lots of it here, so the drs know about it for sure.

Thank you so much. To your continued health.

fedora

[CarlaB]

Fedora, I think you would benefit greatly from reading the first couple pages of the thread.

Three weeks of abx starting two weeks after a tick bite may very well not have been enough. I think retesting would be a good thing, but you would need to go to a doctor who understands chronic lyme ... most deny it even exists and says that after abx treatment, you have to just learn to deal with the pain of "post-Lyme syndrome!".

Well, after over a year on antibiotics, I can honestly say I am almost well. Thirty days into treatment, which would be standard for most doctors, I still couldn't get out of bed!

I had shin pain when I was younger and it was a lyme symptom. I didn't have knee pain until the last five years even though I've probably had lyme for 35 years. So, joint pain is not necessary for a diagnosis.

From what you're saying, I would be highly suspicious. Please read the first couple pages of the thread .... they are loaded with good information ... after that is good, too, but it's people asking me and others questions rather than those of us with Lyme giving out information on testing, symptoms and treatment like the first few pages are.

Feel free to ask all the questions you have ... that's what we're here for!

[fedora]

Hi Carla,

Thank for responding

I did go back and read the first few pages. I had read the first one already. I have over 20 of the symptoms, but I am doing so much better gluten free. Some of my symptoms have completely disappeared others are new and some are much better.

But I still don't feel well, but have had the flu and had it in the house(the kids) for 2 months, so I know my immune system is tired.

I have had ill symptoms since 10(in Georgia then). My dad and his mom have the mood and digestive issues like me, but I am the only one in pain. Mine started in my hands at 10, and elbows, then went to my knees later that year. At 12 I couldn't even walk around the mall once. During this time I had terrible D and vomitting till bile was coming out. At about 13 the pain went away about 95%. So did my awful digestive issues. As a teenager I knew when it would rain, but that was about it. I had some digestive issues, but nothing major. I moved here to this land at 19 in 1995. Then my left shoulder started hurting. It never stopped but ebbed and flowed over the years. My left knee started hurting a few years ago after overworking it with firewood gathering. I have had TMJ as long as I can remember-definately as an elemantary child. I have gotten much better thankfully. It has been 2 months so I feel like that isn't very long after 22 years of symptoms

Interestingly I saw how people with Lyme's will have a trouble side...my left side: TMJ,shoulder, knee. I have been going to the chiropractor since 19. I just keep going out of joint.

It worries me about my daughter. I researched for hours when she got it. I hope she doesn't have it still....

She gets awful mouth sores and moody which I know could also be from gluten. she hasn't been tested for celiac or gluten intolerance yet.

I did take my son to the dr. He said he would test for Lyme's, but after talking to him I didn't do it. His pain is right where a growth plate is in the leg. We both though it showed as joint pain. Now I am not so sure.

My hubby has horrible night sweats that have seriously subsided after being off dairy. He works in forestry for 14 years now

The north coast of california(where we live) is recognized by the CDC as an endemic area for Lymes. I went to the link for the lyme disease network and they had a link to my county's support group. That will be very helpful.

I rambled, sorry. I will be back for sure. Thanks.

fedora

[CarlaB]

Fedora, that would be great for you to get in contact with your local support group. I know Georgia is bad for Lyme, too. It doesn't really matter if you are in an endemic area, I got it in an area that is 'no risk' according to the CDC.

Most Lyme tests are inaccurate, so even if the doc had checked for it, it would likely have been negative.

I used to be gluten intolerant and saw a lot of improvement going gluten-free. But then I started backsliding for what seemed like no reason. That is when I started looking again and discovered Lyme Disease. I used to be very sensitive to gluten, but now that we're treating the Lyme, I can eat it again.

[fedora]

Oh my gosh. Really. That is great!!!I am glad you have found your main issue. I hope it completely resolves for you. I would be so afraid to try gluten again. You are so brave. Interesting, you are on the gluten free forum, but you must have so many friends here.

I don't know if I will be as lucky with the gluten, my dad and grandma both have severe symtpoms with no testing. I do have a DQ2 gene. I am okay with it...more unhappy about giving up casein. I am having some very unpleasant new symptoms every time I eat non cheese dairy.

Thanks, I'll be back with a check in later.

[lizard00]

Hello all

Never thought I would be posting in this thread, but after a few chats with people and feeling as though I too, am at the end of my rope, I thought this might be a good place to come.

I am going to the doctor next Monday, and I of course, want to be prepared. I originally thought fibormyalgia was a possibility, but my pain eases up after I get up and get moving. I definitely have neck stiffness, headaches, back pain (all over, not just lower) and fatigue. These things are at the worst in the morning, but never really go away during the day. If I take a pain reliever it will help, but that's only temporary. My sypmtoms got much better after going gluten-free, also, but I am still not back to being well. My jaw hurts constantly, and I can be in the middle of a conversation and forget what we are talking about. I went and looked at the symptoms and I am right at 20, so I'm not sure that a doctor would consider it or not. The few encounters I've had with my doctor have been great, (I don't go to the DR very much, and have only seen her once or twice. I always get stuck with the PA when I do go for routine checks) but of course I am worried as to how she will react to my thinking Lyme as a possibility. However, if that doesn't work, the Lyme Foundation of NC is right down the road from me, so I always have alternatives.

What do I take in to her? Should I just print out a symptom list and check off the ones that I have? And then how long after a blood test does it take to find anything out? And most importantly, what is the success rate (if anyone knows) of getting insurance to pay for the Igenex test?

[confusedks]

Lizard,

I can't really answer lots of your questions, but I can tell you that most Dr's are VERY unwilling to consider testing for Lyme. I don't know if most insurance pays for Igenex...mine didn't, but it was terrible insurance.

If I were you, I'd call Igenex and have them ship you a kit, then bring it to your Dr and have her sign it and send the blood to Igenex.

I'm glad you're looking into the possibility of Lyme...not to say you have it, but it's a possibility.

[CarlaB]

Welcome to the thread, sorry you might need to be here!

It sounds like you've educated yourself well on what you need to know! I called IGeneX, had them send the kit to my house, then took it to my local doctor to run the test. She reluctantly agreed. If you do that, be sure you get a copy of the test results! They are not easy to interpret.

You also sound fortunate to have that organization down the road. I glanced over their website, and they look good.

Here's a website for the best doc in NC for this illness ... www.jemsekspecialty.com.

Good luck, and keep us posted!

[CarlaB]

Hello all

Never thought I would be posting in this thread

Uh, oh .... first the Lyme Disease thread, next thing you know it, you'll be on the "OMG I might be onto something thread!!!"

[lizard00]

Welcome to the thread, sorry you might need to be here!

It sounds like you've educated yourself well on what you need to know! I called IGeneX, had them send the kit to my house, then took it to my local doctor to run the test. She reluctantly agreed. If you do that, be sure you get a copy of the test results! They are not easy to interpret.

You also sound fortunate to have that organization down the road. I glanced over their website, and they look good.

Here's a website for the best doc in NC for this illness ... www.jemsekspecialty.com.

Good luck, and keep us posted!

Thanks Carla for your help and for even directing me here in the first place! Especially for the doctor. I was trying to find one near here... that's ones a little far, but I would drive it if necessary. It's not the end of the world. I'll definitely keep you guys updated. There has to be an answer somewhere...

[lizard00]

Uh, oh .... first the Lyme Disease thread, next thing you know it, you'll be on the "OMG I might be onto something thread!!!"

now you're just talking crazy!!! LOL

[CarlaB]

Thanks Carla for your help and for even directing me here in the first place! Especially for the doctor. I was trying to find one near here... that's ones a little far, but I would drive it if necessary. It's not the end of the world. I'll definitely keep you guys updated. There has to be an answer somewhere...

I believe that's the only doctor treating Lyme in the state ... but lucky you, there are NONE in my state! I travel to NY for mine!!!

now you're just talking crazy!!! LOL

Famous last words.

[truthsearcher]

Lizard,

I believe that there are others in N.C that treat Lyme. I checked there once because my in laws live there.

There is one in Asheville. Don't know if thats close to you. The llmd there has a PA that works with him who charges much less and I've heard is very good.

You could post in" seeking Dr's " at Lymenet as well for more info. I can also Pm some info on Dr.s in N.C and S.C to you if you wish.

Just let me know.

[lizard00]

Lizard,

I believe that there are others in N.C that treat Lyme. I checked there once because my in laws live there.

There is one in Asheville. Don't know if thats close to you. The llmd there has a PA that works with him who charges much less and I've heard is very good.

You could post in" seeking Dr's " at Lymenet as well for more info. I can also Pm some info on Dr.s in N.C and S.C to you if you wish.

Just let me know.

Thanks! Asheville is a little past Charlotte, which is 3 hours from me. The doc Carla sent me is currently on (or just been released from) a 1 yr suspension to practice in NC, so his new office is just over the line in SC. There was quite an interesting article on him last year... very controversial.

But yes, I would appreciate any info you have. Thanks!

[confusedks]

There was quite an interesting article on him last year... very controversial.

Yes, you will find that the Lyme political arena is HORRIBLE and VERY controversial! If you are worried about talking to a Dr about celiac, LOL....good luck with Lyme! (Not saying you are worried about talking about Celiac or Lyme, but...)

Drs don't believe chronic Lyme exists.

[CarlaB]

Thanks! Asheville is a little past Charlotte, which is 3 hours from me. The doc Carla sent me is currently on (or just been released from) a 1 yr suspension to practice in NC, so his new office is just over the line in SC. There was quite an interesting article on him last year... very controversial.

But yes, I would appreciate any info you have. Thanks!

Yes, this is typical for Lyme doctors! I couldn't remember if he was in NC and moved to SC or vice versa.

Once he got his license back, they still were hassling him, so he moved.

Many of the docs treating Lyme have had their license suspended at one point or another (including mine), so don't let that influence your decision on who to treat you. It's just that these guys are standing up to the establishment and doing what they feel is right.

[lizard00]

Well, there was a questionnaire on the NC Foundation for LD website. I downloaded it and added it up, I have 22 of the 53 symptoms. I think I will print the form out and take it to the doctor. I probably won't be on here much after tonight until either Sun night or Mon afternoon. My appt is at 10:30 mon, so I'll let you all know how it goes.

Thank you all for your help!!!

And Carla, don't worry. I learned a while ago that the best docs are usually the ones who DON'T necessarily follow conventional medicine or just tell you to pop a pill and deal with it. Unfortunately, there aren't many of those around...

[mftnchn]

Yes, we are fortunate when we find one of those doctors. We hope you find some answers. And if it is lyme, you'll be in good company here!

Sherry

[susieg-1]

Welcome to the thread, sorry you might need to be here!

It sounds like you've educated yourself well on what you need to know! I called IGeneX, had them send the kit to my house, then took it to my local doctor to run the test. She reluctantly agreed. If you do that, be sure you get a copy of the test results! They are not easy to interpret.

You also sound fortunate to have that organization down the road. I glanced over their website, and they look good.

Here's a website for the best doc in NC for this illness ... www.jemsekspecialty.com.

Good luck, and keep us posted!

After reading this thread and thinking I must be crazy with so many seemingly unrelated symptoms I am considering the possibility of Lyme disease. Have been gluten-free for 8 months now and diarhea has cleared up but joint/muscle pain continue to the point of not being able to walk at times. I have a very progressive primary care physician who accepted my self diagnosed celiacs after being unable to give me a clear diagnosis for all my strange symptoms. I have assumed rashes were DH but now I'm not so sure. The muscle pains come and go and I have good and bad days. I have a severe ptosis (drooping eyelid) in my left eye and will be having reconstructive surgery soon and am trying to find reason for this problem as I am too young for age to be a factor. Eye Dr. has sugested I see a neurologist and will soon be setting up appointment. Can neurologist determine Lyme disease? I read that you travel to NY for your Lyme Dr and as I live in upstate NY this is encouraging. Can you ive me Dr. name and contact information through this thread or e-mail? I experience many of the symptoms that you posted and have found this thread both frightening and informative. Thank you for your diligence in keeping it going.

[CarlaB]

PM sent.