posted
she gave me a cognitive test and I failed it again Said I may have beginning dementia?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
IGeneX is now doing Immunoblot Western blot tests. Catches more stuff.
Band 31 is a positive band. Many think that having even one positive band is enough. Band 41 is the flagellin band - common to all spirochetal infections. Here's the explanation of the bands.
Your cognitive situation can improve with treatment.
You can't say names here, only in private messages, but I'm wondering if your LLMD is an ILADS LLMD. Most Lyme doctors treat based on history and symptoms, and many consider even one Lyme-specific band enough.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
no she is not treating me because she said it is not a positive test. I am very confused. She said go treat the RA, high sugars, etc. It says on the test it is positive because I have these two bands, igenex positive not cdc positive. she is an ILADS doctor too. been doing this for over 30 years.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Oh no lindaanis.
You STILL are left without treatment after all this time, through no fault of your own. This is horrible. This should NOT be happening. Especially being on the East coast, where there are many good LLMD's.
According to Dr H (world-renowned LLMD, researcher, teacher, and all-around hero), he states;
"The sickest Lyme patients will the have the least reactive bands because their immune systems are just too weak to develop the antibodies for testing. A positive test for any ONE of the Lyme specific bands means you have been exposed to borrelia. They are 23, 31, 34, 39, 83, and 93."
According to Dr H and the CDC website, Lyme disease is best diagnosised by 'signs and symptoms', a clinical diagnosis is best.
Take the Lyme Disease and Multiple Systemic Infectious Disease Syndrome (MSIDS) test here ;
I cannot comment on why your LLMD refuses to treat you. If he/she feels uncomfortable about the diagnosis, they could have started you on an antibiotic challenge to see how your body reacts.
Bottom line is you NEED treatment so you have to find a provider that will do this. This is one of the hardest obstacles Lyme patients face. . , finding treatment. Take all of your copies of all blood work, testing, and provider visits to a new LLMD.
I'm so sorry but there's no other way. You must fight for your health. Start over with a new LLMD if possible. We are always here for you.
Posts: 2977 | From Florida | Registered: Nov 2016
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she said I was "exposed to lyme" but not sure if its active or not. how does any llmd know what answer? I am so confused, sick, terrible memory but wonder if its just brain fog. why is she not treating me with just one or two bands? How do we know when its active or not?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
yes terrible memory brain fog, anxiety, high RA factor, very high, body aches, headaches, etc. I have been sick for 20 months. She said she doesn't know if its active or not. she didn't like the memory issues I was having. I have some doxy in the house, 200 mg. should I take it?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
this was not a western blot, it was another igenex test. I wrote it down above. is this the same as a western blot test?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
she did run my cd57 but never mentioned it to me at the appt. My coinfections were all normal.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
I also noticed she ran the pcr's and they are all negative. So does band 31 mean I have lyme now or not. I do have a lot of the symptoms for sure. I am going to start taking 200 mg. of doxy twice a day that I have and see if I notice a difference
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
Just took out the doxy she had me on originally it is 100 mg twice a day, no refills. not 200 mg twice a day. Any thoughts on this?
Posts: 468 | From boston, ma | Registered: Feb 2018
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
The dosage is not high enough but better than nothing. Usually 200mg-400mg twice a day.
I echo the others who suggest you find a new LLMD and take copies of all your tests with you.
We can't diagnose you but I would find another LLMD.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
The dosage is not high enough but better than nothing. Usually 200mg-400mg twice a day.
I echo the others who suggest you find a new LLMD and take copies of all your tests with you.
We can't diagnose you but I would find another LLMD.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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