posted
I was first diagnosed with MS by a Neurologist and also got a second oppinion which agreed with the MS diagnosis, then I tested positive for Lyme Disease on a Igenex Western Blot by a Lyme Literate Doctor.
I am having a spinal fluid test (Lumbar Puncture) through my Neurologist as a second oppinion for Lyme.
Would this be an acceptable method for a second oppinion being I already tested positive on a western blot?
Please let me Know.
Thanks,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote:I am having a spinal fluid test (Lumbar Puncture) through my Neurologist as a second oppinion for Lyme.
Spinal tap is only 20% accurate for lyme. Not worth the risk. I think most here if not all would agree.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lumbar punctures are not recommended to test for Lyme disease. While a positive lumbar will always confirm Lyme, a negative lumbar means absolutely nothing.
In addition, they are very, very painful.
You need to decide on your own if you are going to believe the Lyme or not. As I'm sure you have discovered, there is a lot of controversy in the medical community about Lyme.
You will always find a large number of doctors disagree with the Lyme diagnosis and telling you that Lyme is overdiagnosed. You really need to read about Lyme, about the symptoms, and about the testing and decide if you want to treat for Lyme or not based on the LLMDs diagnosis.
Personally, I believe if you test positive on a western blot, then you have Lyme. I also believe the best way to confirm then is to see how you react to antibiotics.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Actually, I think a spinal tap is only about 6 or 9% accurate for Lyme, I have read somewhere. They are not a recommended diagnostic tool for sure.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
No
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
You have lyme disease, get to a LLMD.
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Savagek, you can have MS and Lyme - it doesn't have to be one or the other. There is very strong evidence that MS - and other autoimmune diseases - are often a consequence of Lyme, so I would not to anything that might give your neurologist a reason to tell you that you don't have Lyme.
A negative spinal tap for Lyme will do just that, even though all of us here know that those tests are highly inaccurate. This will just confuse you and your insurance company (if insurance is involved), and insurance companies look for any reason not to cover Lyme treatment.
Would you rather be put on some expensive MS drug like Avonex which can't really cure you, or stick with your LL doctor and try to get to the root of the problem so that you have a good chance of recovering from MS?
Conventional medical treatment for Lyme can be tough..... but then, having MS is no picnic. There are also alternative treatments for Lyme and MS, and many of those are discussed on a regular basis here at LymeNet.
Also, if you have not looked into LDN (Low Dose Naltrexone) as a low-cost, low risk treatment for MS, here's link to the page about LDN and MS. There are many other places to read about LDN on the Web if you Google the topic: http://www.lowdosenaltrexone.org/ldn_and_ms.htm
These are just my own opinions, of course.....
I wish you the best in whatever you decide.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Spinal tap is only 20% accurate for lyme. Not worth the risk. I think most here if not all would agree. NO WAY would I do that.....It is 80% likely that it will come back negative. Then your insurance co will have ammunition to use against you.!!!
Oh...and did I mention the risk?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The study below suggests a possible reason why Bb may not be detected in spinal fluid by labs EVEN IF it is present. -------------------------------------------------
In vitro conversion of Borrelia burgdorferi to cystic forms in spinal fluid, and transformation to mobile spirochetes by incubation in BSK-H medium.
Brorson O; Brorson S. Infection, 26(3):144-50. 1998.
Quoting from the abstract:
"B. burgdorferi transformed into cysts (spheroplast L-forms) within 1-24h of inoculation into spinal fluid. When transferred to a growth medium, the cysts converted back to normal spirochetes after 9-17 days of incubation. "When neuroborreliosis is suspected, it is necessary to realize that B. burgdorferi can be present in a cystic form, and these cysts have to be recognized by microscopy. This study may also explain why cultivation of spinal fluid often is negative with respect to B. burgdorferi."
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Rob, I would definitely NOT have the spinal tap. Little chance of anything positive resulting from it. Lots of negative things can result - especially your insurance co having that in your record.
I'm not a dr, but I highly recommend that you stay with the LLMD. Lyme is a clinical diagnosis with test results supporting the diagnosis. You have typical Lyme symptoms and a positive WB, so there should be no need for further testing.
Generally speaking, LLMDs know how to deal with much more than Lyme disease. (S)he will tell you if MS appears to be part of the problem.
If I were in your place, I would not keep seeing the neurologist. Use your time, money, and energy with the LLMD.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
quote:Originally posted by cbb: Rob, I would definitely NOT have the spinal tap. Little chance of anything positive resulting from it. Lots of negative things can result - especially your insurance co having that in your record.
I'm not a dr, but I highly recommend that you stay with the LLMD. Lyme is a clinical diagnosis with test results supporting the diagnosis. You have typical Lyme symptoms and a positive WB, so there should be no need for further testing.
Generally speaking, LLMDs know how to deal with much more than Lyme disease. (S)he will tell you if MS appears to be part of the problem.
Use your time, money, and energy with the LLMD.
I agree completely with the above. I had a spinal tap and could not get up and walk for over 2 weeks afterwards! The neurologist who gave me the spinal tap had not warned me that that could be possible; and she said it was rare, but it happened to me.
Lyme is a clinical diagnosis, and most doctors do not know much about tick borne diseases. That is why so many of us here are recommending that you stick with an llmd.
That has been the only way that I have been able to regain my health, with a doctor who is really an expert on tick borne diseases. Although never diagnosed with MS, I had many MS-like symptoms that are just beginning to get better after 14 months of treatment. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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Itsy_bitsyone
Unregistered
posted
My neuro wanted to give me a lumbar puncture once she heard I had lyme. She said that if my MRI came back normal, she would insist on it to recommend further treatment.
Needless to say, she's fired.
Its your body..your call. My itsy bitsy opinion isn't worth squat. Just make sure you do your homework.
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