The Lyme Disease Thread

[Guest LittleMissAllergy]

Thank you ALL so much...it's so comforting you have no idea.

Truthsearcher, I'm so sorry that your children have it. If you don't mind me asking, what are their symptoms? I hope they are doing well.

dlp, it sounds like you are doing better...glad to hear it. I've got heavy metal issues as well, so that'll have to be addressed as some point too I imagine.

confusedks, your post was SOO comforting. I'm just sitting here worrying...wondering if there's something I've missed, if there's something really terrible going on ontop of this...like I'm worried that these throat and neck symptoms are meningitis! But I know that I can't sit here and do that to myself.

I'd love it if I could keep hearing things from you guys, ANYTHING. It just helps so much THANK YOU....

[Rachel--24]

LittleMissAllergy,

Are you seeing an LLMD? If not I would recommend definately finding the best one in your area. You will need an LLMD to get through this. Unfortunately, Lyme can be complicated so you will need the most knowledgeable Dr. on your side....and that would be an LLMD.

Lyme is multifactorial so you will need additional testing. Things like viruses, co-infections, yeast, metals, parasites, etc....all of those things tend to co-exist with chronic Lyme so you'll need a Dr. who understands all of that and will have all the appropriate testing done.

I'm glad you're feeling less alone now.

[dlp252]

Rachel is right...I have a pretty good LLMD who tested me for all kinds of things in addition to Lyme.

I thought it might be helpful to list the symptoms I have or have had and the status (whether or not they've changed in the last year):

Never saw a tick bite or rash

Of the symptoms listed on the first page, these are the ones I

[Guest LittleMissAllergy]

Rachel- thanks for posting here too! I am indeed seeing an LLMD because 2 years ago when I got sick, my regular MDs couldn't find anything. Then I started seeing an ND and it was going well until we tried to detox some bacteria and metals that she found- which landed me here. Unable to move practically (no exaggeration-which is terrifying!). I'm just worried that my LLMD is missing something, since I'm not seeing a regular MD. I did go get a blood test (in the ER...along with some other reaalllly fun exams lol) and they didn't find anything...but what about things like meningitis? Haha, can you tell I'm REALLY paranoid about this tightness in the muscles in the front of my neck...

Which brings me to dlp...you are SO sweet to share all of your symptoms with me, it really helps (though I'm sorry to hear that you have to suffer through these too) because I've got almost everything on your list as well. So about this stiff neck thing...lol people really don't understand how uncomfortable it really is! I get it in the front of my throat...like my throat/neck muscles almost. SO weird. and uncomfortable.

Gosh, I can't even express how thankful I am to be talking to you guys. You're all so kind, and strong. It helps so much. Especially because this is such a hidden disease that's kept hush hush and swept under the rug...it's hard to find support, or empathy.

[CarlaB]

Hi LMA!

Sorry I've not participated in this exchange at all .... I've been out of town and hadn't been checking the board except for one thread.

You've gotten good advice so far.

I've had Lyme for years but was only diagnosed 15 months ago. I've been going through treatment for that long and am doing a lot better.

In the beginning I needed someone home to care for me as it was impossible for me to care for myself.

Now, even on a bad day I can manage to make my own meals and even go to the grocery. On a good day, I feel completely normal.

Hang in there! Treatment is tough.

[truthsearcher]

Hi again LMA,

I talked to my LLMD about my kids IgeneX results, and he said "they were not remarkable", to not treat unless something really changed.

My 6yo d has frequent tummy aches, odd aches and pains, has to eat in a seconds notice when she is hungry or gets ill that she can't eat. (I can't figure that one out?) So... this could be anything, not just Lyme.

My 8yo s has stuttering, stammering speech which is not getting better. He has poor word recall, and comprehension when reading. His is somewhat uncoordinated. example, doesn't know how to skip, or pump his legs on a swing set. He's almost 9 now. He also cannot read block form, his books he reads have to have well spaced letters and lines or he runs it all together leaving out words and adding his own.

This too can be other things but he had several positive and IND on his Western blot but not enough to be IgeneX positive. If it continues I may call another LLMD and see what he thinks.

HTH

Take care

[CarlaB]

My LLMD treated my daughter based on one IND on band 34 and one + on band 41. The only symptoms she had were learning disabilities (she has an IEP, but only needed minor modifications), headaches, and some stomach issues. Once in a while her knee or elbow would hurt.

We did a trial run of zith for 30 days to confirm her diagnosis. She immediately felt better and herxed at about one month. We decided to do the trial because the risk of Lyme getting worse was greater than the risk of the abx.

We continued on and after 5 months was symptom-free. Even her learning disabilities went away. We kept her on the meds two more months, then switched the meds for one more month to see if she reacted to different meds. She still had no symptoms so was taken off all meds in January. She remains symptom-free.

Honestly, I would either get a trial run of abx or find another LLMD. Your kids do not sound symptom-free. Perhaps Dr. J in CT, the pediatrician, would be a good one to consult.

IMHO.

[fedora]

hi Truthseeker.

I haven't been tested for Lyme's, but I caught my DD's when she first got it. Very lucky.

About your daughter, I would also get hungry in a moment's notice. If I didn't eat within minutes I would get too hungry to eat and feel so ill. The ONLY thing I could eat when I got to that point was banannas. Canned pears too. When I went off gluten, it has stopped about 98%. My friend with diabetes says it sounded like blood sugar issues. Which could be caused by various things I guess. In my instance, gluten related. I don't know if this helps at all, but thought I would through it out there.

Does anyone know if you continue to test positive after being successfully treated for it. The drs. told me that my daughter would test positive after the antibiotics for awhile(her only symptom was the rash which she got 2 weeks after the bites).

[CarlaB]

Fedora, if you caught the Lyme right after her tick bite this is your one and only chance to eradicate the disease. After it's disseminated, your best bet is remission with the danger of it coming back at any time.

She needs to be treated long enough and with enough meds. Most doctors undertreat.

I would consult with an LLMD. You REALLY want someone Lyme literate as this is your only chance to get rid of it permanently.

Sorry to be so dramatic, but I've lost way too much of my life to this disease.

There is NO direct test to see if the Lyme is still active. The testing that is done if for the antibodies, not for the disease.

[truthsearcher]

Hi Fedora.

Thank you so much for thinking of my dd. My dd is exactly the same way you use to be. The only thing she can eat if she doesn't eat that very minute and gets sick is a banana. Weird huh? It surely sounds like a sugar low doesn't it?

Thanks again, and I agree with what Carla said above.

[num1habsfan]

After being in the hospital for 2 days last week, and without any answer at all (and more added to my "dont have" list) I was suggested by a certain friend from this forum to check out this thread.

For what symptoms you listed, I have 32 without having to have a kinda yes/kinda no question about any of those. If I included the iffy symptoms that list would be higher.

I am wondering if anyone from in here is from Canada, and has Lyme Disease..

I did my research on it.. it appears in this country a lot get lied to. These are official/gov't websites I got the information from so i trust that its true. Each article I found said that a person from this country was determined they had Lyme Disease, had the test done in Canada (who told her it was negative). She wasn't convinced so got a privatized test from the U.S., and tested positive.

I don't even want to imagine how much it would cost to take the U.S. test.. but I need some kind of help with this. I am running out of answers already. And I can tell you we have the ticks that they say carry the disease. Some years you can't walk through any grass (or bush) without having at least 10 of them crawling on you at once. I also know that everyone in the area is super stubborn, so even when we get a tick stuck in us for long enough that there may be even 2 legs, we rip them out--only go to the hosp if they are completely buried and swell.

~ Lisa ~

[CarlaB]

Hi Lisa, I agree wholeheartedly that you should be tested. www.igenex.com is the test you want to have done. If you get both Western Blots (yes, you need both, one is IgG and one is IgM), then it's about $200. It's a start.

Keep in mind that they test for antibodies, not directly for Lyme. Thus, those who are sickest might not have the antibodies show up. It's a clinical diagnosis based on symptoms supported by testing.

I would recommend posting on Lymenet (.org) under seeking doctors to find a doctor near you.

There are not many Lyme docs in the US, and there are even fewer in Canada. I have to fly to NY to see mine.

[CarlaB]

This film just opened at the Tribeca Film Festival in NY -- www.underourskin.com. Check out the trailer.

[num1habsfan]

Hi Lisa, I agree wholeheartedly that you should be tested. www.igenex.com is the test you want to have done. If you get both Western Blots (yes, you need both, one is IgG and one is IgM), then it's about $200. It's a start.

Keep in mind that they test for antibodies, not directly for Lyme. Thus, those who are sickest might not have the antibodies show up. It's a clinical diagnosis based on symptoms supported by testing.

I would recommend posting on Lymenet (.org) under seeking doctors to find a doctor near you.

There are not many Lyme docs in the US, and there are even fewer in Canada. I have to fly to NY to see mine.

By $200 do you mean its what you guys in the US pay to be tested??

Sorry I'm just a little confused and trying to figure out if I can afford any of this.

~ Lisa ~

[dlp252]

By $200 do you mean its what you guys in the US pay to be tested??

Sorry I'm just a little confused and trying to figure out if I can afford any of this.

~ Lisa ~

Yeah, I paid $190 last year for the two western blots--I'm in California, USA.

[CarlaB]

$200 is the fee the lab charges. The lab is in CA. I had them send me the test kit, then I took it to my doctor to do the blood work and send it in. I had to give the lab my credit card number so they could bill me directly. My blood draw was covered by insurance.

How can you afford to not find out? Treatment is less expensive than lost years of work.

[num1habsfan]

$200 is the fee the lab charges. The lab is in CA. I had them send me the test kit, then I took it to my doctor to do the blood work and send it in. I had to give the lab my credit card number so they could bill me directly. My blood draw was covered by insurance.

How can you afford to not find out? Treatment is less expensive than lost years of work.

OK.. the thing is that here, if its not by doctors request, even going out of province to see someone would cost money. Its not covered otherwise.. I might have to call someone from the health department of the government and find out how much it will be.

I'm concerned because I remember hearing in the news that someone from Saskatchewan here years ago got some simple tests done in the US and had to pay over $30,000...

~ Lisa ~

[dlp252]

I'm concerned because I remember hearing in the news that someone from Saskatchewan here years ago got some simple tests done in the US and had to pay over $30,000...

WOW!!! Yeah, I think things work a lot differently here. I had to pay the whole cost up front, but was reimbursed by my insurance company. My insurance plan allows me to see whoever I want. They have an in-network rate and I pay 30% if I go outside the network.

[Ursa Major]

OK.. the thing is that here, if its not by doctors request, even going out of province to see someone would cost money. Its not covered otherwise.. I might have to call someone from the health department of the government and find out how much it will be.

I'm concerned because I remember hearing in the news that someone from Saskatchewan here years ago got some simple tests done in the US and had to pay over $30,000...

~ Lisa ~

Lisa, it would be almost like doing the Enterolab test, which I had done for my youngest daughter. It cost me almost $500 because we had to send it back by FedEx, which cost nearly $100 alone.

If Igenex charges US $190.00 for the kit and the lab work, then that would be Can $192.59 according to today's exchange rate. Hopefully your doctor will order the labwork, which unfortunately it is possible that insurance won't pay for, if it isn't processed at a Canadian lab. So, you might need to add the charge for having the blood drawn, which can't be all that much.

I don't know if you have to ship the blood back by courier. If yes, add another at least $50.00. But I can't see that altogether it would be more expensive than doing Enterolab.

Why don't you contact Igenex and ask them your questions? I imagine that they have tested Canadians before and will know the answers, and can tell you how much it would all cost you.

I agree though that you may have Lyme disease, you sure fit the profile! And it is utterly ridiculous that the Canadian government claims that Lyme disease is so rare as to be literally non-existent in Canada. It isn't the only thing they are sticking their head in the sand for. Ignorance is bliss in their opinion!

[CarlaB]

had to pay over $30,000...

~ Lisa ~

:o

Lisa, it would be almost like doing the Enterolab test

Yes, but this has to be done by a doctor. Having the test sent to your house only ensures the doctor will send it in to the right lab. It does have to be sent FedEx and kept cold.

And it is utterly ridiculous that the Canadian government claims that Lyme disease is so rare as to be literally non-existent in Canada. It isn't the only thing they are sticking their head in the sand for. Ignorance is bliss in their opinion!

It's not any different here .... we have only a handful of doctors who are willing to put their license on the line and treat Lyme as it needs to be treated. Most of these doctors have had to defend their medical licenses. I have to fly to NY for treatment because there is no one in this whole state who will treat Lyme.

[truthsearcher]

Yes I recall there are some Canadians on Lymenet who have Lyme. I think Peacesoul is one of them. You could browse around over there and check it out and pm some fellow Canadians and you'll gets lots of good advise.

hth

[CarlaB]

Here is a very interesting presentation on Lyme.

Open Original Shared Link

[fedora]

hi,

so my daughter was treated with 3 weeks of antibiotics against Lyme's bacteria in spring 2002. We caught it right away. She was only one, got bit, and got the bull's eye rash. Would the antibodies still be present now? She tested positive through Quest labs in California. On Sunday she got bit by 4 tiny ticks!!!!! so what I am wondering if she can ever be tested accurately again. I realize it is for antibodies. Will she always have the antibodies in her? I am confused. I am watching her closely for any symptoms for awhile. Plus we are dealing with getting her off gluten.

Thanks

[CarlaB]

If I got bitten or if my kids did, I would immediately follow the ILADS recommendation of 6-8 weeks of antibiotics. I would not wait for symptoms and take the chance of developing chronic Lyme. In some areas 60-70% of the ticks carry Lyme.

I don't know if the antibodies would still be present from the first bite. But if she ever has symptoms, I would get her treated.

[AndreaB]

Carla,

Is the 6-8 weeks the minimum for first exposure to lyme?

I know of someone who was told 10 days abx would cover everything. I thought 3-4 weeks minimum myself, but Mayo says that the longer term abx is more harmful. I, of course, don't agree with that line of thinking and I don't see how a couple months could hurt to make sure the lyme is taken care of when someone is first exposed to it.