posted
Ok, so I am now a little confused. I was diagnosed with lyme about 1.5 years ago. At the time I was VERY sick immediately after infection. I had the rash, palpitations, bells palsy, nasuea, extreme exhaustion (i would fall asleep with people talking to me...really) and sever migraines (i am the kind of person that gets a headache one a year). I received the 3 weeks of dioxycyline and felt better...but never back to 100%. I continued to struggle with fatigue and palpitations, which I was told were PVCs that I now just have to live with
About three months ago I started having neuro symptoms...recurrent facial paralysis, parasthesias of the right side (same side as the face), auditory hallucinations, and brain fog. These symptoms come and go. Today my right hand is particularly slow...frustrating.
I followed up with my PCP who listened to me, and referred me to neurology and ID. My neurologist has been great. My neuro assessment showed that I have diminished sensation and movement on the entire right side of my body (fantastic!). The MRI came back normal. He did the bloodwork for Lyme, which came back with a positive western blot, and IGM 3/10, IGG 6 (don't remember the exact value, but it was over the CDC requirement for definite previous infection of Lyme). The trouble is that to have Chronic Lyme the IGM needs to be 5/10 bands...so I have some infection, but not enough for treatment??
The next step is a lumbar puncture, which I am not excited about, and which I understand is not terribly reliable for Lyme anyways. I'm following up with infectious disease as well.
I just don't know what to do at this point, or how to interpret my tests...I feel like saying, just give me the IV ceftriaxone! it's what i should have had in the first place!!
I am so frustrated!
Any insight into the tests?
Posts: 17 | From Boston, MA | Registered: May 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme Disease is a "clinical" diagnosis! Test are unreliable and are only used to back up a clinical diagnosis. You need a LLMD(lyme literate medical doctor)!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Do NOT get the lumbar puncture!!! Get away from the clueless neurologist! PASS on the infectious disease dr. They are clueless also and will not treat you past 4 wks.
Go to here to find a Lyme specialist who will TREAT YOU until you are well!!
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."---Dr C of MO
+++++++++++
Is your IgG positive, the IgM .. or both???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
i am not sure what your situation is but is very difficult to get a positive spinal tap for lyme and they will use the results against you in the future as another tool to prove (in their minds) that you do not have lyme........
they did it to me i didnt know any different at the time but they threw it back at me this year, negative MRI, negative spinal do not have lyme despite CDC western blot...........
dont do it................
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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quote:Originally posted by Florence1: [QB] ....[it] is very difficult to get a positive spinal tap for lyme and they will use the results against you in the future as another tool to prove (in their minds) that you do not have lyme........
That is VERY true!! I forgot those very major points.
A spinal tap has a 20% chance of showing any Lyme. Lyme spirochetes do NOT hang out in blood or spinal fluid!!
AND YES, THEY WILL TRY TO USE THIS AGAINST YOU IN ORDER TO DENY TREATMENT.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Get copies of your lab work. Make a medical notebook and keep track of everything.
A lumbar puncture is worth doing. It can rule in/out lots of things. Ask to be checked for any infectious pathogen (including Lyme) that they think might be causing your problems. Have someone drive you home after that procedure.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I'm not being disrespectful and it is each individual's decision as to what test they choose; but I have literally not heard of anyone that got any benefit from getting a lumbar puncture to diagnose LD.
If you are getting it to check for something else then it may be neccessary. It is definetly not neccessary for a LD diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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quote:Originally posted by sutherngrl: I'm not being disrespectful and it is each individual's decision as to what test they choose; but I have literally not heard of anyone that got any benefit from getting a lumbar puncture to diagnose LD.
If you are getting it to check for something else then it may be neccessary. It is definetly not neccessary for a LD diagnosis.
I also have neurological lyme and did not have a lumbar puncture done, for all of the reasons that others have mentioned. However, it is useful to have a brain SPECT done, as that would show if you have inflammation in parts of your brain consistent with lyme disease. Since you already have a neurologist, hopefully you can convince him that a brain SPECT should be done.
Posts: 40 | From New York | Registered: Mar 2010
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posted
Thanks for the advice. I have decided to skip the lp for now, since it is really not reliable for Lyme anyways. I'm going to put everything on hold until I meet with an LLMD. I decided I really don't want the neurologist leading the team on my Lyme treatment, and I don't want a painful, unreliable procedure if it's not necessary.
Posts: 17 | From Boston, MA | Registered: May 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I concur. I had a spect done before I was Dx. It was abnormal (found out the day I was Dx). The neuro wanted to do a spinal tap. I said no way.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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