posted
I was curious, because my Doc has not returned my phone calls...I have a positive western blot, and recently had a spinal done which came back negative for the Lyme AB index, however the albumin ratio (protein) came back Abnormal High...this has me confused can someone help me with this?
Posts: 4 | From Reading PA | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First, now would be a good time to formally request from your doctor's office (whoever handles the paperwork) a full copy of all these tests mailed to "just for my personal file" you should state.
You do not need to announce this to your doctor as it should help to say low key about your next steps. And, in case your doctor may be open to working with you if you get an expert, it's just best to play this carefully.
So, what's up with that LP?
The abnormalities from the lumbar puncture may likely be explained by the presence of infection, specifically lyme -- even if the CSF was negative for lyme (CSF = cerebral spinal fluid).
I'm so sorry you were not able to ask here first about the lumbar puncture as it is a very unreliable test for lyme. False negatives are common.
I would have hoped they would have tested the CSF for other possible infections but my guess is that you would have said so had they done so.
If you have symptoms and a positive western blot, that says a great deal. You should be evaluated by an ILADS-educated lyme literate doctor who will also assess for other tick-borne infections that often travel with lyme.
Any doctor who orders a lyme lumbar puncture for lyme testing is not "lyme literate" - sorry. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
27 REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
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I see that you posted a couple days ago in "Seeking a Doctor". Good luck to you. Hope you get some solid answers soon. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- � AVOID STEROIDS as they can make lyme (and other stealth infections) much worse and much harder to treat. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
A lyme specialist knows to go by the Western Blot and the patient's symptoms and not to even order a lumbar puncture to make a lyme diagnosis.
Why? Because, in those with lyme, only about 9% have lyme show up in their spinal fluid.
In the October 2011 Lyme Conference, Dr. Burrascano spoke about lumbar punctures to find lyme. This is what he said (from my notes):
"Since only about 9% of spinal fluid is positive, that means that spinal taps will give a false negative result 91% of the time."
He went on to say: "But, ALL lyme includes neurologic involvement. That is because within a short time, lyme is in the blood throughout the body. You have blood in your brain, so the lyme is also in the brain."
I and many on this board are living proof of this. Before I got to a lyme doc, a neurologist did a lumbar puncture on me and it was negative for lyme. So, in spite of my positive Western Blot, my brain scan results showing UBOs (unidentified bright objects) and saying that lyme could not be ruled out, and my debilitating symptoms, he declared that I did not have lyme! Quote: "You do not have lyme in your brain! Do you hear me? You do not have lyme in your brain!"
I then found lyme specialists to treat me for lyme and its coinfections and I got rid of all of my diseases and got my normal brain and body back.
Hope this lumbar puncture will not be used against you, like to deny you treatment.
I was rejected by the mainstream medical community and had to come to lyme support groups for names of lyme docs. That's the only way I got treatment for my diseases (lyme, babesiosis, and bartonella). I tested positive for all 3 of these through Igenex, a tick borne disease specialty lab used by the majority of lyme doctors.
If you have not yet read the Burrascano Lyme Treatment Guidelines, I strongly suggest you do so. This is how you will get your education on this disease. They are not an easy read because they were written for doctors. They are here:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease!" (page 8)
You see, the lumbar puncture is not looking for lyme in your spinal fluid. Rather, it is looking to see if there are antibodies to lyme in your spinal fluid. In other words, it is an indirect way of trying to see if lyme is present. And, it doesn't work very well at all.
Burrascano was the most successful lyme specialist in his day. People from all over the world came to him to have lyme disease treatment. He treated this disease for at least 25 years before recently retiring.
I can't speak to the albumin ratio. You may want to do a web search to see what you can find.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
thank you to all who responded, i really got my work cut out for me. I have a copy of the Guide Lines and have been busy reading and re reading, as my brain just dont seem to work like it used to. I am greatful for the list of Doctors, plan to use my income tax to been seen, mean while, i hope my neuro will work with me. I am so glad I was introduced to this site...i know i am not alone and that helps in leaps and bounds...thanks for being here !!!!!!
Posts: 4 | From Reading PA | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Stang66,
I am sorry for you to be tossed into all this.
I really hate how often I have to say this, but, in fair warning:
Do not count on any neurologist to give you the time of day once you even whisper "lyme" in their presence. It's a very sad reality.
You also have to be very careful not to get your medical file flagged as "Difficult Patient" as then you will never be taken seriously for anything.
A patient that whispers "Lyme" is most often flagged as a "Difficult Patient" and that is a CODE for other doctors to discount you, basically, forever. It happens very often. Be aware.
Contact your local / area lyme support groups FIRST, in case there just might the miracle of any doctor who can help you until you can find a LLMD.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor
Scroll 1/3 of the way down to see the section with more links explaining the differences in care between ILADS and IDSA.
===========================================
As you say it may be a while before you can find a LLMD, you might want to look over the various articles and books here to get an overview of the range of treatment options & philosophies.
Scroll past the referral search details for the articles.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links, and
BODY WORK links with safety tailored to lyme patients,
RIFE links,
BIONIC 880 (& PE-1) links, and
LOW HEAT INFRARED SAUNA detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Suggestions for When You Need Treatment and Funds Are Low
posted
Thanks again for the info, my appointment went pretty well, i hope i dont get flagged, that would just be the icing on the cake( a nasty cake). My neuro admitted he dont know enough and i showed him some info and he seemed to be interested(really) in getting me the help i need. He has an IDD who has worked with Lyme in the past up North and is hooking me up. He even agreed that the testing is flawed and he hates the insurance companys for dictateing what he can and cant do for his patients..all in all it could have been worse so i guess its progress in this mess! i was pretty nervous, but after talking with him i feel he IS sincere and so does my husband(took him for back up). It may be a long road, but for now i think im on the path until i can see a LLMD or LLND. Thanks Aagin Blessing to all !!!
Posts: 4 | From Reading PA | Registered: Jan 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my friend had a lumbar spinal. took her months to recover. plus it was very painful.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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![[confused]](graemlins/confused.gif)
back negative for the Lyme AB index, however the albumin ratio (protein) came back Abnormal High...this has me confused can someone help me with this?
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