posted
Hello, I am new to this support group and im hoping to find help and support with my situation.
Ill try to make this brief since I dont want to bore you with the details....
I started getting sick about 4 years ago...at first I did not test positive for lymes but eventually did....ive been up and down for the past few years...past few months have felt myself going down hill again and I woke up a few weeks ago having a siezure....had an EEG which confirms the focal siezures are happending ever 2-3 minutes....Went to doctor he checked my lymes and said all the tests turned up negative. so now im confused...do I have lymes or not? I have all the syptoms and have tested positive in the past....they dont no yet why im having the siezures....MRI showed no brain tumors etc... My regular doctor is thinking its the lymes but we dont no.... has anyone expierenced this type of positive testing then negative?? anyone having siezures because of the lymes? or are we barking up the wrong tree? any imput I would greatly appreciate. thank you
Posts: 27 | From NJ | Registered: Apr 2011
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Seizures can also be caused by parasites - they invade the brain. Just to be sure you should get started on parasite treatment, but slowly and be careful. Dr. K writes about it.
Posts: 1834 | From US | Registered: Oct 2008
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posted
i am not sure parasites invade the brain, but the gut and stomach definitely send inflammation to the brain through nerves....
Posts: 723 | From Montreal | Registered: Oct 2010
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Yes, if you've had a positive lyme test in the past, this is quite clear that you have lyme, even if you test negative later on.
Many people with chronic lyme have negative test results. Blood tests are really poor for tick-borne infections.
I'm not very good at explaining technical stuff, but many who tested positive for lyme, and then have it for awhile, will later test negative. The body is not reacting to it in the same way, so the immune system isn't creating antibodies which are picked up on the blood tests.
Sorry for the poor explanation, but the upshot is that this is not at all uncommon. If you tested positive in the past, and you are clearly having the symptoms, there is no doubt that you have lyme.
And yes, the seizures are likely the result of lyme as well. Seizures are absolutely a symptom of lyme (although few mainstream doctors will know this). Seizures have been a main symptom for me -- I have them frequently, and know of others who do as well.
You are absolutely NOT barking up the wrong tree -- you are barking up the RIGHT tree This is a symptom of lyme, and a sign that your body really needs support from someone familiar with lyme disease.
You need a lyme-literate doctor. I recommend posting in "seeking a doctor" to get a referral.
Posts: 232 | From Oregon | Registered: May 2010
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I truly appreciate it!
Posts: 27 | From NJ | Registered: Apr 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Welcome! Yes, it's clear that you have Lyme (no "s" by the way).
As someone else said, you need to find the best Lyme Literate doctor you can find! And this site will definitely help with that. Also, ask for referrals for a Lyme Literate neurologist (or at least Lyme sympathetic, but ideally, Lyme Literate).
Spend some time investigating who you think would be the best before you pull the trigger, as who you see is a big, important decision. You want someone with years of experience in treating Lyme, and someone who is not afraid to rx IV antibiotics, if necessary.
Know that ordinary drs, and especially neurologists, WILL NOT understand about Lyme at all, in spite of what they may say. Don't waste your time or money on them, or they will make you crazy.
You may have to travel a ways to get to the best drs, but it is worth it.
And keep coming back here; Lymenet is a godsend for info and support. We all need a lot of both with this difficult journey.
If you can find any in-person Lyme Support Group, that will be a great help, too. If not close enough, there are yahoo Lyme groups by state, which is helpful, esp for info about local drs, etc.
Posts: 3771 | From around | Registered: Mar 2008
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