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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » Should I be looking for a LLMD?

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Author Topic: Should I be looking for a LLMD?
Member # 15113

Icon 1 posted      Profile for al369     Send New Private Message       Edit/Delete Post   Reply With Quote 
Like many people who may suspect they have Lyme disease, I have done two blood tests and gotten negative results.

Both were c6 IgG/IgM antibody tests. In the second test, which I took 01/24/08 it says that "Lyme Interp corrected from positive to negative on 01/28/08."

I don't know anything about the testing methodology, except that a certain amount of the antibodies are supposed to be in your blood for a conclusive diagnosis of Lyme disease.

They also performed a Wetergren ESR, which I think has to do with sedimentation of one's blood and can help in diagnosis and that was 12, which is normal. The problem is that false negatives are fairly common, even when testing spinal fluid, so here I am.

My symptoms began almost 12 years go when I was 20, possibly 19. I do not remember a ``bull's eye'' rash, though I did go to upstate NY a few times at 16 and 17 and I was remember getting sick with bronchitis and fever several times that year.

I am not sure if that means anything or the swollen lymph nodes I am often plagued with because it could just be that I have a weak immune and bad repertory system.

At age 19 I hade my first sinus infection, which was severe (the continued for the next few years) and moments of vertigo and dizziness. After showers and working out I would have more of these ``incidents,'' which my therapist informed me were panic attacks.

At 24, I collapsed on the street after running in 90 degree weather, my arms and feet went cold and I had intense ``pins and needles.''

After a few hours at the hospital, oxygen, and a 5 minute conversation with an RN who took my blood pressure, I was informed I suffered from sun stroke and low-blood sugar.

I lost my hair once--I thought because of a color mishap. At 27 I had a very bad case of vertigo that lasted a week. I lost my hair again and had to cut it short--again I thought it was because of something I did.

At 29 I had an unexplained peripheral neuropathy, radiating pain down my leg for 6 months, no herniated disc(s) or degeneration from the MRI and no explanation as to why it began or more importantly why it just suddenly stopped one morning, which it did.

I was just better and over a few weeks almost back to normal, though I sometimes have an abnormal gait.

Six months later I had a fine tremor in my left hand, and a stiff neck and was sent for an MRI, which showed ``a patchy flair signal abnormality in the periventricular white matter, predominantly along the posterior aspects of the lateral ventricles...This is a non-specific pattern, consistent with a variety of inflammatory, demyelinating, or vasculitic etiologies.''

After a long run of neurological tests, I was told that I was healthy. My PCP went so far as to call my therapist and tell her that my symptoms were psychosomatic. I no longer see either one of them. At the time my balance was not good, but not horrible.

The next sixteen months I suffered from worsening balance, vertigo, headaches, fatigue, body aches, swollen lymph nodes, freezing hands and feet, nausea, and moments were I had extremely bad brain fog, occasional slurred speech, and short-term memory issues, including forgetting words.

During this time I would get periods of extreme numbness in my arm, but mostly in the mornings, so I thought it had to do with the way I was sleeping.

In December 2007 I began having muscle spasms twitches after a cold/virus (swollen lymph nodes, sore throat, fatigue). They are still occurring.

I have had horrible pain down neck and arms, pins and needles, numbness, vertigo, terrible balance, nausea, vomiting, though that only occurred once, bladder changes, that is more urgency, blurred vision, eye twitching, and pain in my writs and fingers, today it's in my left ankle and knee.

Worse still, I went through a period when I was freaking out because I thought my arms were weakening and I was sure I had ALS. I have facial numbness on my left side, tearing my from left eye for over a year, though it wasn't consistent and the stiff neck and Bell's palsy has gotten miserable.

I did and EMG, which showed my legs were normal and went on to do an MRI of the C-spine, which came back normal, a second MRI of the brain, which showed a congenital brain defect, but nothing that would indicate MS, which is what my new neurologist thought I had.

I went to see MS specialists and they have requested I get a lumber puncture, which I'm doing in a few weeks. In the middle of all this, at around 02/10 or so, I developed a sinus infection and horrible cough, which only now has resolved.

The depression, which I have had since about 19, has gotten progressively worse, as has my anxiety.

Before this last bout in 2007 I began to think that I had bipolar disorder, instead of the cyclical depression I was first diagnosed with because things had gotten pretty bad and everyone was telling me that physically I was fine.

Someone from another forum suggested I visit and I thought I would look into it because I need to keep my mind open if I am going to be my own best health advocate.

I apologize for the length of the post. I wanted to include all my information. Thank you for taking the time to read it.

Am I being premature in trying to see a LLMD or should I wait after the spinal tap? I was also considering ordering a test kit from Igenex. What do you think?

[ 02. April 2008, 08:47 PM: Message edited by: al369 ]


Posts: 36 | From New York, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator

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Absolutely! Even the best Lyme tests will miss the majority of


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Member # 12711

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sent private message


Posts: 82 | From Florida | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 14183

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I sent you a private message.
Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Member # 743

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Pass on the spinal tap....PASS!!!

spinal tap nightmare;f=1;t=047324

Pass go and go straight to an LLMD or a doctor who will sign off on a test through Igenex Lab in CA.

When to Suspect Lyme Disease

More info:

Wild Condor's Links and information:


Opinions, not medical advice!

Posts: 95725 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 15088

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hi - sent you PM

This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.

The shortest way to do many things is to do only one thing at a time.


Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator

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al, welcome to the board; glad you found us.

thanks for your really detaield post! you've been thru the mill like the rest of us. we'll point you in the right direction of getting a GOOD LLMD, LYME LITERATE MD!!


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