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Lymes Question Continued
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Lymes Question Continued

I think 92 comments are enough for the previous thread.
Let's start fresh with this one.
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Avatar_f_tn
While you can argue away individual pieces of evidence of Lyme Disease, you need to consider the bigger picture.

You show antibodies in your body that are consistent with Lyme Disease. You show a low CD57 count, which only happens with Lyme and HIV. And you have symptoms consistent with Lyme Disease. If you want further evidence, you could get an HIV test to either confirm or exclude it. If you exclude HIV, that just leaves Lyme.

Your test results and symptoms are apparently enough to convince a doctor who is experienced in diagnosing and treating disseminated Lyme Disease that you actually have the disease.  

Your benzo withdrawal does complicate your situation, but having no memory of a tick or a rash means nothing.  About half of Lyme patients don't remember one or the other or both.

You don't have to be a camper/hiker/outdoorsy person to pick up an infected tick, either. A pet dog or cat could bring it into your house, or a friend's house where you went to visit. I have a relative who found a tick crawling right towards him in his coworker's pick up truck. The coworker had been in the woods over the weekend. In other words, you don't have to go where the ticks are. Someone or something else can bring them to you.

As I see it, you have two choices at this point in time.  

1) Continue to see the LLMD for now, follow her treatment and see how you do. You would need to give this at least three months before you can make any assessments. One caveat to this approach... If you have a hidden case of Babesia (which is very possible), you might not see much improvement at all. Not responding to appropriate antibiotics for Lyme is often a sign of Babesia. Again, a good conversation with your LLMD at each appointment is critically important.

2) Decide that you are not convinced that you have Lyme and wait a few more months to see if your symptoms resolve. I would encourage you to talk this through with your LLMD first.  As Dr. Harris said, you have a "low" result for Lyme.  But remember, he also said that some people who are sick with Lyme show even less.

Your anxiety level seems very high. I say this not to be critical, but just as an observation. This is a common symptom of Lyme and I experienced it myself.  I do not know if it is a common symptom of benzo w/d.

Imagine that you are trying to make a criminal case on circumstantial evidence. Often times, there is enough such evidence that when you add it all up, there is clearly a best answer.

Most of us here have experience with late stage Lyme Disease and we know how miserable it can be. As a result, we would probably err on the side of treatment if there is less than absolute proof of the disease. Others would say to wait and see.  But you will have to make your own decision that you feel comfortable with. No one can give you an absolute answer.

Hang in there! I hope you come to a place of peace soon!
12 Comments Post a Comment
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1530171_tn?1362547225
A recent study by Fallon et al suggested that brain imaging using a single photon emission computed tomographic (SPECT) technique is another diagnostic approach for neurological Lyme disease.
( I just don't understand how the SPECT findings can identify it as such.)
  

"Test Combinations": IGeneX has a combination of tests, which when done at the same time, give a Lyme test that has > 96% specificity and 95-97% sensitivity, regardless of the stage of the disease.
This information comes from Dr. Nick Harris-founder of IGeneX- as reported by Karen Holmes of California Lyme.
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Avatar_f_tn
While you can argue away individual pieces of evidence of Lyme Disease, you need to consider the bigger picture.

You show antibodies in your body that are consistent with Lyme Disease. You show a low CD57 count, which only happens with Lyme and HIV. And you have symptoms consistent with Lyme Disease. If you want further evidence, you could get an HIV test to either confirm or exclude it. If you exclude HIV, that just leaves Lyme.

Your test results and symptoms are apparently enough to convince a doctor who is experienced in diagnosing and treating disseminated Lyme Disease that you actually have the disease.  

Your benzo withdrawal does complicate your situation, but having no memory of a tick or a rash means nothing.  About half of Lyme patients don't remember one or the other or both.

You don't have to be a camper/hiker/outdoorsy person to pick up an infected tick, either. A pet dog or cat could bring it into your house, or a friend's house where you went to visit. I have a relative who found a tick crawling right towards him in his coworker's pick up truck. The coworker had been in the woods over the weekend. In other words, you don't have to go where the ticks are. Someone or something else can bring them to you.

As I see it, you have two choices at this point in time.  

1) Continue to see the LLMD for now, follow her treatment and see how you do. You would need to give this at least three months before you can make any assessments. One caveat to this approach... If you have a hidden case of Babesia (which is very possible), you might not see much improvement at all. Not responding to appropriate antibiotics for Lyme is often a sign of Babesia. Again, a good conversation with your LLMD at each appointment is critically important.

2) Decide that you are not convinced that you have Lyme and wait a few more months to see if your symptoms resolve. I would encourage you to talk this through with your LLMD first.  As Dr. Harris said, you have a "low" result for Lyme.  But remember, he also said that some people who are sick with Lyme show even less.

Your anxiety level seems very high. I say this not to be critical, but just as an observation. This is a common symptom of Lyme and I experienced it myself.  I do not know if it is a common symptom of benzo w/d.

Imagine that you are trying to make a criminal case on circumstantial evidence. Often times, there is enough such evidence that when you add it all up, there is clearly a best answer.

Most of us here have experience with late stage Lyme Disease and we know how miserable it can be. As a result, we would probably err on the side of treatment if there is less than absolute proof of the disease. Others would say to wait and see.  But you will have to make your own decision that you feel comfortable with. No one can give you an absolute answer.

Hang in there! I hope you come to a place of peace soon!
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Avatar_f_tn
Ditto what Rico said above.

Well said, Rico.  
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1763947_tn?1334058919
Ditto Rico but I will add that I had blatant symptoms of Babsia and my LLMD started treating me for it long before the igeneX test came back positive.
Hang in there!
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Avatar_f_tn
You say above:  

"A recent study by Fallon et al suggested that brain imaging using a single photon emission computed tomographic (SPECT) technique is another diagnostic approach for neurological Lyme disease.
( I just don't understand how the SPECT findings can identify it as such.)"

SPECT (to my understanding) does not show fuzzy areas of inflammation like an MRI, which fuzzy areas are largely indistinguishable from MS and perhaps other ailments.  SPECT shows areas of low perfusion (blood flow) in the brain, due to swelling, which is found in Lyme but not in MS.  Differential diagnosis at work.
  
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1763947_tn?1334058919
Jackie is right, that is why many of us with brain lesions after an MRI are told we have MS but having the SPECT  scan can  identify the difference between the two.
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Avatar_f_tn
and PS, my LLMD sent me for a SPECT scan early on, and was impressed with the mess in my head.  I was quite ill, which matched up nicely with the SPECT results. fwiw..
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1530171_tn?1362547225
Jackie, I understand the SPECT imaging process.
I had Dr. Daniel Amen send me detailed information on this, in the past.
What I do not understand is how can any one distinguish Neurological
Lyme findings vs any other.
What could be the significant detail that qualifies this as specific to
Bb?
Just curious, if anybody has any experience with this to share.
Cheers!
Niko
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Avatar_f_tn
The two tests look for different things.  

MRI:  structural aspects

SPECT:  cerebral blood flow

-----------------from wiki-----------------------------
"Magnetic resonance imaging (MRI) uses magnetic fields and radio waves to produce high quality two- or three-dimensional images of brain **structures** without use of ionizing radiation (X-rays) or radioactive tracers."
----------------------------------------------------------
"Single-photon emission computed tomography (SPECT) is similar to PET and uses gamma ray-emitting radioisotopes and a gamma camera to record data that a computer uses to construct two- or three-dimensional images of active brain regions. SPECT relies on an injection of radioactive tracer, or 'SPECT agent,' which is rapidly taken up by the brain but does not redistribute. Uptake of SPECT agent is nearly 100% complete within 30 to 60 seconds, reflecting **cerebral blood flow** (CBF) at the time of injection. ... SPECT provides a 'snapshot' of cerebral blood flow ...."
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1530171_tn?1362547225
I must apologise for not been able to bring my point across, clearly.
Thank you for your kind intend to answer my query, anyway.
Jackie, I do mean this, as you have a beautiful quality, the intention to inform, to educate and to help others, in such a selfless way.
You have made a major contribution to this Community, and I know that many members really appreciate your input and advice.

Let's try this again.
Suppose Maria is suffering from possible  Lyme Disease or MS exhibiting mainly neurological symptoms. She has a SPECT study done  and the  
SPECT patterns show certain abnormalities.
My question : Is there any significant characteristic in the abnormalities showing, that a Doctor/Radiologist can identify (distinguish) Neurological Lyme vs MS (or any other neurological disorder/condition)?

Such a distinction, would offer tremendous diagnostic and consequently
treatment value.

Take care.
Niko





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Avatar_f_tn
The only answer I can give you is that the two tests detect different aspects of brain function:  structure is affected in MS; blood flow is reduced in Lyme due to swelling.  

So, yes, there is a 'significant characteristic in the abnormalities', that being how they affect the brain; the manner in which the brain is affected.  A knowledgeable MD can tell the difference.  My LLMD used a SPECT scan in diagnosing my illness.

These tests are measuring two different things.  The issue is not the quality of the test data or their presentation; it is instead the nature of the test data.  An MRI of Lyme looks like an MRI of multiple sclerosis; however, a SPECT scan showing abnormalities does not correlate with multiple sclerosis, but does with Lyme.

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My impression on the use of the SPECT scan is that it is one more weapon in the arsenal, not necessarily the silver bullet. It is used in conjunction with other results, especially symptoms and history. I didn't have one as I didn't need it. My blood tests were sufficient for diagnosis.
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