New to lyme, looking for help

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skibum1
New Member


Date Joined Aug 2010
Total Posts : 12
   Posted 9/4/2010 3:58 PM (GMT -6)   
Hi everyone,
Thought I would introduce myself and tell you some of my story and ask a question. I first found this site a few months ago and have been on the Chron's forum because that is one of my problems. I have Chron's and had a bowel resection about 2 years ago. I still deal with that all the time. I have a history of Atrial fibrillation (heart condition) which I am on med for. Also have Arthritis along with many other aches and pains.
My two part question is first, does anyone know if it is possible to have lyme Disease, be tested and sometimes be + and not others, and does anyone sweat a lot with this disease? Along with all my other problems I have just been diagnosed with Lyme Disease and for a very long time I thought that my sweating was part of My Chron's Disease.
I have many other symptoms that I am trying to figure out if it is my Chron's , My heart or Lyme Disease. If anyone has any ideas or input I would be sooooo ...... grateful

Thanks to all and be well
Mike

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 9/4/2010 5:43 PM (GMT -6)   
Hi Skibum!!
Welcome to our forum!!! I'm really sorry that you are having so many things going on with your health, but I am glad you decided to stop by the Lyme forum!! I'm sure you will find the people here to be kind, caring, supportive & helpful!!

Lyme Disease & co-infection attack the body at it's weakest points & could be the possible reason as to the why you have to deal with Chron's & your heart condition & even the arthritis - many people with tick-borne illnesses have those issues as well.

As far as the tests & why they may be switching around form positive to negative, is that the blood tests are only looking for the body's response to the bacteria, so if your body doesn't recognize the bacteria -even though it is in your body reeking havoc - it won't produce those antibodies that are necessary to test positive.

One of the best things you could do now - IMO - is to read the thread at the top of our forum titled "New to Lyme?...Start here", as it is packed full of a lot of common sense type of info. You won't regret reading it!

Please feel free to ask all of the questions that you need to here!! That's part of the reason we are here!!
Hope this helps some.
May you find peace along your journey to health.

Trav
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 9/4/2010 8:00 PM (GMT -6)   
Mike:

My two part question is first, does anyone know if it is possible to have lyme Disease, be tested and sometimes be + and not others, and does anyone sweat a lot with this disease? Along with all my other problems I have just been diagnosed with Lyme Disease and for a very long time I thought that my sweating was part of My Chron's Disease.
I have many other symptoms that I am trying to figure out if it is my Chron's , My heart or Lyme Disease. If anyone has any ideas or input I would be sooooo ...... grateful
______________________________________

When your Lyme test is +, it means your immune system is producing antibodies to fight the bacteria. If a test is --, it is not necessary that you do not have lyme, it means your body is not producing the antibodies against it. Why: Several reasons: according to LLMDs (Lyme Literate MDs, many of the chronic lyme patients test --, but with antibiotic treatement, they later test +. The bacteria likes to hide and comes back when the situation is favorable for it to thrive. That is why it is so difficult to eradicate it. It is hiding from the immune system and if the immune system does not recognize it, it is not producing the antibodies to destroy it. This is one reason it is not detected in blood. If it is no longer in the blood, the tests are -- because the tests measures the antibodies in your blood. Lyme bacteria takes several forms: Cyst, spirochettes, and biofilm. Read the first thread on this forum, as Traveler suggested. The cyst and biofilm is hard to eradicate, even with abx.

Lyme should be a clinical diagnoses, it should not be based entirely on test results. Even the CDC says so.

If you sweat=the toxins are coming out of your body=good thing, you do not want them to stay in there! They make you feel sick. Antibiotics kills the bacteria and leaves toxins residue from it in your body. Detox recepies are available in the first thread, some are v. simple and innexpensive. Some people have excellent results with those detox methods.

Good luck and please let us know if you have questions. Everyone here is nice and helpful.  Hope the above makes sence--my brain is pretty cloudy right now. 

Post Edited (Simela) : 9/4/2010 8:09:04 PM (GMT-6)


skibum1
New Member


Date Joined Aug 2010
Total Posts : 12
   Posted 9/4/2010 8:34 PM (GMT -6)   
Traveler, and Simela,

Thanks for your help. Wow what a crazy disease it looks like I have a lot to learn. After I learn more I'm sure I'll have more questions, but thanks to kind people like you I know where to go to ask them.

I hope you both stay well
Mike

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/4/2010 10:44 PM (GMT -6)   
Hi Skibum...you may (or may not) have heard that the tests for Lyme aren't very accurate (I've heard everything from 30% to 70% accuracy during the three years I've been sick with Lyme and researching...either way that leaves at least 30% inaccuracy, which is not good!).

I just wanted to tell you - I sweat CONSTANTLY! Before I got sick with Lyme disease, I was always the one who was cold all the time...now, I'm always sweating, always having hot flashes and feeling "sick." I think a lot of it is from the use of pain medication, but I also think some is from Lyme. I remember when I was taking Methadone, I used to wake up several times in the middle of the night, drenched in sweat - would have to change my clothes (even my underpants) and sometimes sheets on the bed. It was horrible - and that was the number one (along with urinary retention) reason I switched to OxyContin...which has been great for over two years, but still causes sweating (though not nearly as bad). I don't know if you're taking narcotic pain medication, but if you are, it's almost guaranteed to be contributing... I keep my fans running 24/7 - almost can't tolerate not being in front of one, even when I'm sleeping!

skibum1
New Member


Date Joined Aug 2010
Total Posts : 12
   Posted 9/4/2010 10:53 PM (GMT -6)   
Thanks Madrivergirl30 , It helps to get and idea about what are the reasons for different symptoms. Just curious and I'll understand if you don't want to say but does your screen name come from Mad River Glenn VT? If it does I have skied there many times. What a great place. The first time I skied there it had snowed over 2 feet of fresh powder. Me and my friend were in heaven. That was a long time ago but I'll never forget.

Thanks again and all the best
Mike

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/4/2010 10:56 PM (GMT -6)   
Sure does! I grew up about 10 minutes from MRG...and still live in the same area - it's beautiful for sure!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 9/5/2010 9:11 AM (GMT -6)   
I'm one of the many here that didn't test positive even though I was infected for many years!!! Fortunately, I finally had a Neuro diagnose me with Lyme (because of facial palsey) so that I could then get in to see a Lyme Literate doc. He diagnosed me clinically with Masters' Disease & other tick-borne infections so that I could start treatment. It wasn't until after a full year that my blood tests were considered positive.
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 9/5/2010 1:37 PM (GMT -6)   
Hi and welcome to the forum. Having a lot of symptoms and being diagnosed with diverse illnesses and conditions is a common thing for people with Lyme disease. For years as I was diagnosed with one thing after another, I wondered why my body was falling apart when I had such a healthy lifestyle. Your list of symptoms is faimilar, though I have IBS, not Crohns. A place for hope is that if for you, like me, those things were caused by or triggered by the Lyme (and for me coinfections) then as you get treated for Lyme, the other things may improve or maybe even disappear.

Since the testing accuracy is tenuous, many diagnoses are made via consideration of symptoms. To me, it's significant that you tested positive, even if that later changed. Have you been tested for other infections that are often found in people who have Lyme disease? I had a marginally positive Lyme test with the Western Blot, but when I tested positive for two coinfections (no question about positive test b/c the pathogen's RNA was in my blood cells) it eased my concern about whether or not I actually had Lyme.

I hope you will soon be feeling better.

Rose
I have Lyme; it doesn't have me.
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