posted
If you have bands on the western blot showing that lyme is/was in your system at some point but not all bands are there, this means that you were bit at some point and have it (dormant somewhere), right?
And since lyme does not go away on its own untreated and you were never treated for it, this would mean the person would need to be treated for it-- am I correct in my assumptions?
Still trying to get setup with an LLMD but in the mean time have a follow up with my PCP to go over my tests where two bands showed up on western blot. I know he's going to say I don't have it since they all weren't there, but I feel like my point is valid. If they said (and those were the words they used) that I have been exposed to lyme but it isn't active in my system... yet I have never been treated for it, how is it supposed to go away?
Just thought I'd ask for a little insight on this while I wait.
Posts: 20 | From Northern VA | Registered: Aug 2011
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I believe it depends on the bands. Some bands cross react with other borrelia / bacteria. But others are unique and dedicated to lyme. So if those are present..most LLMD's believe this is evidence of exposure otherwise why would they be there??
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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I believe many LLMDs, if not all, won't treat if there are no symptoms due to the fact that there would be no way of knowing when treatment is done, i.e., symptom free for 3+ months. Although I guess a herx reaction through an abx challenge might be a way to treat, not sure.
This is only the case with chronic Lyme.
If you are dealing with a recent bite, then immediate and thorough treatment would definitely be in your best interest.
Posts: 648 | From northeast | Registered: Feb 2009
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posted
You are correct that Lyme will never go away without treatment. I do not know what each band specifically means, others on this board know a lot more about it than me. Maybe someone else will chime in.
The bacteria that causes Lyme is a master of disguise. It has many different methods of hiding from your immune system, and tricking your immune system. The test for Lyme measures your body's fighting response, and not the bacteria itself.
So, if your immune system has been tricked into thinking there is no infection, you will have a negative test. For a lot of people, myself included, the sicker you are, the more negative the test will be. For many people who initially had a negative test, once they are into treatment a little while, the test results become positive.
You are making a very good choice to see a LLMD. Most people will not get healthy without one. Lyme is very complicated, especially for the people who have had it undiagnosed for a long time.
I was "exposed to Lyme" 14 years ago. I had symptoms come and go, but nothing that made me realize there was anything really wrong. But after the birth of my baby (3 1/2 years ago), my body started to shut down, and I got very sick very quickly. I am now 35 and disabled, unable to leave the house most days, and unable to leave bed many of them.
My point is, Lyme can lie dormant for a long time, and then when the conditions are right, it takes over. You did not mention if you are having symptoms or not. What prompted you to get tested? Do you know which bands specifically were positive, or if you also had any that were IND?
In my opinion, it is worth fighting now for the treatment you need, before your life has been totally taken over. Your screenname makes me think you are in high school? If I were you, I would not stop until you have a doctor (LLMD) who will take it seriously.
Please keep us posted, and ask any and all questions you might have. There are some amazingly intelligent and experienced people here who are so willing to share. Utilize this resource, it has been key in understanding this illness for me.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
Your assumptions are not correct. If you have symptoms, then the lyme is not dormant. It is active and your immune system is not able to control it!
We like you to answer OUR questions also, not us just answering yours. That's how you are going to get accurate information.
Also, there is no sense in trying to get the PCP to agree with you. It just isn't going to happen. Many before you have tried. You need to study up on the lyme controversy. I believe someone gave you a link to a good video that explains the 2 camps that exist regarding lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here is the video. It was done by a Boston TV station about 2-3 years ago.
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks guys. Also, thank you for posting the link to the last thread-- I stopped getting emails about responses so I didn't know there were more! I will go back and reply. I know all about the controversy and unfortunately it is what I'm dealing with currently. My PCP is great, but sides with the CDC. I have my followup next week, and he had said he has no problem putting me on antibiotics to try it out, but I just worry he won't continue the treatment-- time will tell though. I am definitely having symptoms, which is why I have a gut that lyme is what is causing it. I didn't realize what was going on the past two years... a lot of random stuff that I chalked up to overuse of joints when I was younger and everything else not being related. I've had joint pain for a while, it just started recently getting worse, and in more places. I've had a swollen gland in my neck for probably about two years. got it checked and they just said it was enlarged. nothing else wrong. don't come back unless it gets bigger. very sore and swollen joint in my toe.. which prompted a cortisone shot and steroids, which made me feel better. i told my doctor (my foot dr) and she said we should test for lyme and a bunch of other things. that's what all started it. then i got sent to a blood dr for more tests. also have had an eye twitch for about 6 months. exhausted. major brain fog and mixing up words.. just not able to think sometimes. it all makes sense to me.
I'm actually 28-- I have just used this name for everything since HS. still-- too young to be having all this stuff going on to be "normal".
I have been doing a lot of research. I just don't know how this is all happening. How people don't understand what a big deal lyme is and are so resistant to being open to treatment. So many people going through this and no one gets it-- until you're in that spot. so many people "trying to help you and tell you whats wrong"-- go see a rheumie, it's sleep apnea. lose weight. ok that will solve one symptom, what about the 30some others? it's so frustrating that no one gets it and it's nice to have others here that know exactly how you feel. Thank you everyone for all the info you've given so far. Just trying to take it all in.
Posts: 20 | From Northern VA | Registered: Aug 2011
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posted
Your story sounds a lot like mine, with the feet and all. Most of my symptoms would come and go, and so many things I did not realize were symptoms, as they came on slowly over the years. Like muscle twitching, burning sensations, getting light headed, and such. I just assumed everyone experienced them.
1 1/2 years ago, the joints in my feet and toes suddenly (in a few minutes) started burning and felt like they were on fire, literally. They swelled up and turned blue instantly. The pain was immense. Similar episodes had happened in the past, but none this severe. I went to the doctor, and ended up being referred to a rheumatologist. He put me on steroids, and eventually on a chemo medication to suppress my immune system, as he thought I had an autoimmune disease similar to rheumatoid arthritis.
I was on these drugs for about 6 months before I finally saw a doctor who diagnosed me with Lyme. I am telling you this story because the steroids almost killed me, and they need to be avoided at all cost. Steroids are like putting gasoline on a fire when it comes to Lyme disease. By the time I was correctly diagnosed, my body had almost completely shut down.
I was having seizures, could not walk unassisted, had constant heart palpitations, and looked like I had Parkinson's, I twitched and shook so much. I was having brain fog to the point that I was having a hard time remembering my children's names, and could not remember how to cut up food for my toddler. I would sleep for 6 to 7 days at a time. My LLMD had me stop the medications immediately, and I am convinced that if I had taken either one of them for any period of time longer, my story would have a much different outcome.
It was almost a year ago when I started with my LLMD. It has been a very difficult year, and I still have a long way to go, but I am functioning much better. I still have a hard time getting through the day, but I can walk on my own. The brain fog is slowly getting better. I have color to my skin, although the bags under my eyes are still pretty dark, but are getting better. My doctor told me recently that when I first came in to see him a cool breeze would have knocked me down, but now I can stand on my own two feet. I have even been cleared to do some gentle exercise, like pilates or walking.
Despite the fact that I had been infected for 13 years when I started the steroids and chemo, if I had seen a LLMD instead of the rheumatologist, I would be doing much better today. It was the misdiagnosis and wrong treatment that really did me in. I know this post was long, but I wanted to share my story to encourage you to get to a LLMD ASAP. I know there are a few instances when a LLMD might put a patient on steroids short term, but other than that, DO NOT LET ANY DOCTOR PUT YOU ON THEM. It literally is the difference between getting healthy or staying sick.
I was actually in your part of the country when I got infected, many years ago. I hope you find some of the answers you are looking for. And I hope you find a LLMD to help you through the process.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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TF
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posted
To see if folks have replied to any of your posts, go to "My Profile" at top of page. Then click on "View Recent Posts."
Your last 50 posts will be listed. Go to each one of them and see if anyone has replied.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I know all about the controversy and unfortunately it is what I'm dealing with currently. My PCP is great, but sides with the CDC. I have my followup next week, and he had said he has no problem putting me on antibiotics to try it out, but I just worry he won't continue the treatment-- time will tell though. I am definitely having symptoms, which is why I have a gut that lyme is what is causing it. I didn't realize what was going on the past two years... a lot of random stuff that I chalked up to overuse of joints when I was younger and everything else not being related. I've had joint pain for a while, it just started recently getting worse, and in more places. I've had a swollen gland in my neck for probably about two years. got it checked and they just said it was enlarged. nothing else wrong. don't come back unless it gets bigger. very sore and swollen joint in my toe.. which prompted a cortisone shot and steroids, which made me feel better. i told my doctor (my foot dr) and she said we should test for lyme and a bunch of other things. that's what all started it. then i got sent to a blood dr for more tests. also have had an eye twitch for about 6 months. exhausted. major brain fog and mixing up words.. just not able to think sometimes. it all makes sense to me. 
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