posted
Thank you for the PM. I tried to reply, but your mailbox is full. I'll forward the info to my brother.
Posts: 975 | From California | Registered: Apr 2007
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
You're welcome dear!
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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posted
Siciliano Thank you so much for your encouragement. I slept peacefully after reading it.
When I am stronger, I will attempt a second opinion of my als diagnosis.
Do you think Dr Susan B at NY Presbyterian would consider lyme as an alternate dx to als even though I've never tested positive?
My current llmd doesn't believe in lyme tests, says they are too innacurrate. He treats based on symptoms. Trial and error, I guess.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
I think the first thing she would say is YOU need a lyme test! I also think you should get a new LLMD! One can learn plenty from Igenex, Quest, LabCorp, etc.....speaking from experience. A smart lyme Dr does all 3 at the same time, like my smart lyme Dr did!
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 2young,
as you had at least a couple months of IV antibiotics by mid-August, I wonder if you are talking about REPEAT lyme tests? They are not needed. Success is based on symptom improvement, there is no blood test to determine that.
If you are thinking back to your first test, remember that the CDC criteria fails many patients: ---------------
Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Oh, I did not know you had IV abx---how did you feel after that?
You stated that you never tested positive but did not say which tests you have had in the past. Was it just a Western blot or other testing?
You will never know what Dr. Susan B. is going to say or diagnose if you never see her.
If it were me, I would get a second opinion from a good LLMD and I would do the lyme tests that I have not done like Igenex, etc...
I have seen it too many times now with patients telling me that their LLMD treated them BASED on their symptoms, had little to no improvement, went to another LLMD who DID have them tested to find that they were treated for the WRONG co-infection.
I was bedridden for 5 years and VERY, VERY sick. Every Western blot test showed "Negative" results. Then did Igenex, Quest and LabCorp which showed "Positive" for Bartonella having the highest # possible!
I would NEVER, EVER trust a Western blot test!
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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posted
Siciliano... So which test showed the bart?? It wasn't a WB?
2young.. I would also get a test thru Igenex if you haven't already done so. And a second opinion from a well respected LLMD.
THEN the neuro if that doesn't pan out.
(that would be my personal plan of action)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
It was from Specialty Labs in California. Which is also Dr. J. in CT, the one he favors.
Tested Positive for Bartonella IgG -- Reference Range is <1:64 titer -- mine is 1:256!!
All Western blots are NEGATIVE!
On LabCorp results shows I have more than 1 gene mutation. I recall the HLA DR4 but had some others as well.
No wonder I have not been able to be on my feet!
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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