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CarlaB

The Lyme Disease Thread

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Yes, you COULD have lyme and not have symptoms of it. I don't know when I got it, but I wasn't really sick until the last 7 years or so. The decline in my health started about 10 years ago, but it was small things that individually didn't seem bad, and were certainly tolerable.

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Angie, yes, you can have Lyme and be asymptomatic. I am like you and have been bitten many times, all about 35 years ago. I did have sporadic health problems from it for a few months at a time, but mostly I've been healthy. My predominant problems from it have always been GI and fatigue. It was only in the past few years I developed more classic Lyme symptoms like joint pain and muscle aches.

From what I understand, a lot of people are exposed, but never get sick. They only figured out in the 80's that Lyme is bacterial, so there is still much disagreement on how to treat, how to diagnose, etc.

I really don't know what the right thing would be for you to do. I'd recommend posting on Lymenet as there are many who have been there for a long time, are better, and just hang around to answer questions. Lymetoo is a member of both this board and that one. I highly respect her opinions. At any rate, you'll hear many more opinions there and can use them to decide what to do. You also might read at www.ilads.org. There are some diagnostic guidelines there that are wonderful.

If you've been exposed and never treated, you do carry it. If you're not sick from it, I don't really know the answer. I know they are treating my daughter for it and she only shows a few symptoms (minor joint pain, headaches, gluten intolerance) ... and her treatment is a heck of a lot easier than mine because it was caught earlier ... I'd give anything to have treated before I got so sick.

Good luck, and please keep us posted!

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How do I find an LLMD in my area?

Post on Lame Advertisement under "seeking doctors" and someone will PM you a name of a doctor. I know there is a doctor in PA, but I don't know where he is. Most of us have to travel ... mine is in NY.

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I agree with everything said here. It is worth the trouble to find out now. I have struggled for a good portion of my adulthood with the symptoms and it has really cut into my life. Not to scare you, just be thorough now so you don't regret it later!

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Thanks guys. I think I really needed someone to scare me into getting something done. I will talk to my family doctor first. They aren't exceptionally knowledgeable about most things that I've encountered, but they are more than willing to work with me whenever I have ideas or suggestions. They really are wonderful about that. Perhaps they'll be receptive to testing through Igenex.

I have to order the kit myself, right?

Also, how soon can I be tested?

If my doctor isn't willing to test or I turn up positive through Igenex I will look for an LLMD. I really don't care how much it costs me out of pocket if it saves me pain and suffering down the road.

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Angie, I had the test kit sent to me so that my doctor had no excuse to not give me the test ... it would look really bad if I even provided the test kit and she refused, right?

Be sure you get a copy of your results as they're not cut and dry ... they can show exposure, but if they don't meet the CDC tracking criteria, then most doctors will tell you it's negative. If you already had a test that showed antibodies, it seems that you have been exposed ... it's just a matter of if an LLMD thinks you need to be treated. I really don't know how they handle someone not showing symptoms ... or maybe you are showing symptoms and don't realize it ... here's a symptom list -- www.canlyme.com ... I think it's also posted at the beginning of this thread.

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Carla, I've felt fine other than a stuffy nose. That could be from allergies though. Rainy weather really does me in. No fever or anything.

How do I find an LLMD in my area?

I didn't save the tick. When I got it off of me it fell and we couldn't find it at all. I vacuumed my kitchen immediately, but I don't know if I got it or not. I've been checking my dog and my daughter daily to make sure it didn't somehow find its way onto them.

I've been bitten probably hundreds of times before and have tested positive for the antibodies for Lyme, but have no symptoms. They told me that I had been exposed, but hadn't contracted Lyme, whatever that means. Yes, this was my family doctor, so I'm sure they know nothing about Lyme. This all took place before my Celiac diagnosis and the gluten free diet has taken care of 100% of my symptoms. We do live in an area where Lyme disease is prevalent. Could I have Lyme and just not have any symptoms yet (from a previous bite)?

Hi Angie;

I'm new to this--I just got tested for the first time a few weeks ago, so I'm not very Lyme Literate yet. I'm not sure what all of the symptoms are---I know there are a (LOT) of them; but I just wanted to mention that I am very sensitive to damp weather too.

Also, the compounding pharmacist where I just got one of my prescriptions filled, told me that he hasn't seen a Lyme patient yet who doesn't have Gluten Intolerance. I don't know if this actually applies to all Lyme patients or not; but I also have Gluten Intolerance--I have had it for many years.

Blessings;

Ava

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Ava, WELCOME!!!! I'm wondering if that's because he's a compounding pharmacist??? People who need their medication from that type of pharmacy are going to have some kind of intolerance I would think.

I think gluten intolerance is very common amongst Lyme patients as it's a common topic on Lymenet, but not all the people on Lymenet are gluten intolerant.

Sensitivity to damp weather can indicate a candida overgrowth.

Sorry you have Lyme. I hope you start feeling better soon.

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Hi Carla :)

I have about 20 symptoms on the list. I'm definitely not right just being gluten-free and am trying to find a practioner who can help me get to the bottom of all this. I don't remember being bitten by a tick, but we did grow up in tick country and my sister was bitten so I guess there's a fair chance I was too. Only problem, I live in the UK. Do you know if there are any practitioners in the UK who would know how to deal with Lyme properly? I think my NHS doctor would just tell me off for reading too much on the internet if I talked to him about it :rolleyes: Are any of the poster on your board from the UK? Is it worth me looking on there?

Thanks

Susie

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Hello Ava, welcome! It sounds like you have a GREAT pharmacist, lol! Smart guy. Lyme causes a lot of the body's functions to not function properly, so gluten intolerance makes a lot of sense. I have a celiac gene, so I'm doubtful I can ever eat gluten regularly again, but perhaps once I get some of this stuff taken care of I'll at least not have to worry about cross-contamination.

Susie - it's my personal opinion that anyone who remembers being bitten, or who lives in an area where ticks are prevalent and isn't responding to the treatments for the conditions they have should consider getting tested for lyme. It's a tricky disease that can mimick all kinds of disorders. I read on one of the websites with symptoms that if you have 20 (so you meet the cutoff, lol) of the symptoms you should be tested...

As far as doctors, I can't remember if there are any from the UK on lymenet, but I think there must be, or there must be a UK version of the board.

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Susie, I know there are some people from the UK on Lymenet, but unfortunately for you, it seems most of them come here for treatment. Several see my LLMD in NY.

You can try posting over there in seeking doctors to see what they say, but from the conversation I took part in last week with a guy from the UK, it doesn't sound good. I think there might be one LLMD there ... but I don't know. At the very least, maybe some of them can tell you how to get tested over there.

About half those with Lyme never remember seeing a tick bite.

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Susie, I know there are some people from the UK on Lymenet, but unfortunately for you, it seems most of them come here for treatment. Several see my LLMD in NY.

Yikes! Definitely couldn't afford that. I'll have to tell DH to hurry up and get rich lol :lol:

Maybe I'll look into all the other issues first and then see if I'm any better...

Thanks Carla

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Given that you have celiac disease, I'd look into bacterial dysbiosis. It can cause a surprising number of symptoms.

Also, do you have amalgam fillings? They can cause heavy metal toxicity, which can also cause candida overgrowth.

You might want to post on Lymenet if you're interested in testing for Lyme Disease ... there are several from UK who would be better than me for telling you about who to see over there. :)

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Hi there.

I just found this thread, but I posted a question on the OMG thread. I don't know how to move things or navigate too well.

I am hoping someone will be able to answer my questions I posted over there.

Thanks bunches,

TS

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Thank You for your help in understanding everyone!

Just to clarify I am get my testing through IgeneX.

I live in upstate NY, so some of the tests are not available to me, I don't really know why?

The one in the Initial Lyme Panels available to me are the 5000 and 5010. Which one do I get in that column? One uses whole blood, one uses serum. Which one is best?

Each test is $390 dollars, I don't have a clue why it costs so much more than the basic lyme panel #4090 which is no $245 dollars which includes the IFA. The IFA is not available to me in NY.

I have a Dr. who will order them, but I don't trust her ability to get me the right test, this is why I ask here. I did the regular old lyme test through a local lab and this was negative and this suited my Holistic Dr. So you can see why I need confirmation on the right test.

THanks so much!

TS

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TS,

The Western Blots are available to you....those are the tests you really need right now.

I wouldnt bother with ordering the whole panel....just have your Dr. order the Western Blots.

The other tests in the panel are not as sensitive. Just stick with the Western Blots and you'll save yourself some money.

If necessary, you can order one of the other tests later on.....most people just get the Western Blots.

The Western Blots are $190.

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TS,

On Igenex's site it says this...

(IGeneX is now performing a courtesy PCR on serum if whole blood is ordered and vice versa if both serum and whole blood are received.)

It sounds like they will do the PCR for both as long as the whole blood is ordered and they have a sample of both the whole blood and the serum.They will have the serum because that is what is used for the Western Blots.

Personally, I would skip the PCR alltogether and just get the Western Blots.

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OK... now I see where I can order individual tests. You are right :rolleyes:

I always get anxious when I don't understand something, I'm so afraid of making a mistake. :unsure:

Now I think I'm on the right road.... to who knows where

Thanks again

TS

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Hi!

I read this thread a while back and found it to be extremely informative and interesting! I have a couple questions... I feel awful silly asking about this, and almost PMed Carla instead, but then thought oh well, what the heck...

I was tested for Lyme when I was 11 years old. This would've been 1989. Were the tests back then not any good???

My mom took me to the local hospital for testing because I developed a distinct circular rash- actually three circular rashes- on my front torso. They were small, ranging in size from quarter- to silver dollar-size. She was very worried that it might be Lyme, because it was summer and I'd been out tromping through the woods with my friends all day, every day, for months. I got several ticks that summer. (I was worried that it might some kind of grody worm, since we'd studied that in school recently, and we played in a creek all the time, etc.)

The hospital drew blood. They ruled out worms and the Lyme test was negative. They said, Must be a heat rash. My mother was skeptical, and I thought it was downright stupid, even at age 11. Three little circular heat rashes on an 11-year-old in spots where there's no friction?

Well, the rash faded away and I didn't really think about it again till Amy Tan was diagnosed, and then again when I found this thread. When I was reading through the symptoms, of course I found several that I have, but nowhere near 20. I certainly have not been chronically ill or anything.

But then tonight I came back and followed the link to the rash photos. I was astonished! A couple of the photos show rashes identical to the ones I had.

So that brings me to another question-- So some people can be bitten by a Lyme tick, and still not get Lyme? What if you get the rash? Does that mean you definitely contracted it? If you do contract it, do some people just... I don't know- throw it off? Or do they have it forever, and you never know when it might make you sick? What does it indicate if you get the bullseye rash? If anything much?

Sorry if that's a lot of questions... I was just awfully surprised to see those photos! Some of them look nothing like what I had, then there's a couple that are exactly the same, from what I could tell. I remember my rash well, because the trip to the hospital and the blood draw freaked me out.

Anyhoo, thanks in advance!

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1989 was pretty early days for testing, even now testing isn't the best quality. I'd say you could definitely have been exposed.

Some people do seem to contract it without becoming symptomatic. Others seem to carry it without too much trouble until at some point when they go through some kind of stressor.

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I lived with Lyme for over 30 years before I got diagnosed and treated. Most of that time I only had a small handful of symptoms, though three times I had disabling fatigue for about 3-4 months that self-resolved.

Because I have it so badly now, I'm aware of the symptoms and saw them in one of my children. She did not have 20 symptoms either, but tested mildly postive (very low positive actally) for Lyme with IGeneX.

We started treatment in order to confirm diagnosis ... to see what her response would be.

She felt better immediately ... she has mild herxheimer reactions (she gets moody and tired, but is still able to attend school). After four months, she had no more headaches, no more joint pain, is less moody, and has had significant improvements in school.

She used to take 2-3 class periods to finish a test ... now she finishes with the rest of the class. She used to have at least 4 hours of homework per night, now she mostly finishes it as school.

All this with only 4 months of treatment!!!!

My point is, I'd try to catch and treat it early, meaning before you have a lot of symptoms.

Yes, some people can carry it and not get symptoms ... you can also carry it only to become symptomatic later on. I wish I had treated when my symptoms were mild, but I didn't even know it was Lyme then.

A Bull's eye rash is diagnostic for Lyme even without testing. You might want to get the opinion of an LLMD about whether you should treat.

You might look into the Cowden Protocol. I know my LLMD has very good luck with it ... but for me, I have too high a bacterial load for it ... but we are looking at switching over once I'm doing somewhat better.

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:blink: Well, I must say this is a lot to think about! I have to get Ezra sorted out before I even think about doing anything else... (see my Doctor Appointment Shocker post in Kids and Babies, if you haven't checked it out already...)

It would seem so strange to possibly treat something if I feel ok.... Although I don't quite like the idea of being a ticking time bomb either... so to speak! :o

So odd to think you can carry this around for years and not even feel it... then whammo at any time.

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