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Avatar universal

Do I have Late Stage/Chronic Lyme

Overview:

I am a 37-year-old male, employed as a computer systems consultant in Pennsylvania.  Besides a few minor sicknesses, I have been in excellent physical and mental condition.

I have been suffering for the past four months with overwhelming fatigue, confusion, inability to concentrate, memory problems, altered mental/emotional status, slurred speech, dizziness, and sensory abnormalities.   A full description of these symptoms follows below.

These symptoms have forced me to take a leave of absence from work, disengage from almost all social interactions, and stop any physical activity.

A Lymes disease ELISA test showed no evidence of Lyme.  As far as I know, I never developed a migrans rash; since I live alone I would have noted a rash only in an easily visible area.  A full description of relatively recent test results follows below.    

CSF IEP and other testing showed no evidence of MS.

An MRI revealed a single hyperintensity lesion in the periventricular region in the left occipital area.  The lesion did not react to dye.

Symptoms In Last Four Months:


Symptom Description Severity Frequency

Physical Fatigue · Overall sense of weakness.· Become exhausted very easily with any physical activity. Severe Constant

Confusion/Memory · Difficulty concentrating.· Difficultly remembering. · Sense of “brain fog”, with “zoned out” feeling.· Trouble “finding” words when speaking.· Slur words when speaking. Severe Near Constant

Altered Mental Status · Much more easily agitated and irritable.· Situational feeling of information overload.· Heightened noise awareness with even small noises (e.g. dropped fork in floor) hurting ears. Medium Frequent


Dizziness/Vertigo · Constant unsteady spinning feeling.  This feeling varies from “acceptable” to severe and incapacitating Severe Constant

Sensory Abnormalities · Involuntary twitching in arms and legs (frequent).· Left hand grip weakness (occasional)· Heavy, numb (like Novocain), pins/needle, tingle, painful forearms/hands (occasional lasting for ~ 1-2 days)· Clumsiness, especially dropping items.· Foot drag when walking.· Occasional tight, numb (like Novocain), vibrating/buzzing feeling on top of skull (6 in X 6 inch area) (lasting 5-10) minutes).· Occasional high-pitched sounds in ears (usually right ear) Medium (ranked as Medium since less effect on Job/Life performance) Frequent

Fainting · Early September fainting episode requiring trip to ER.  I did not lose consciousness but could not speak and did not have awareness for 10 minutes.  No evidence of stroke.  Normal EKG.· Two other subsequent incidents of near fainting; severe weakness/dizziness, rapid shallow breathing, feeling of not enough air, moist cold skin.   Severe Infrequent

Back Pain · Lower back/hip joint pain.  This started before this grouping of episodes but is now worse. Medium Constant


Recent Test History: (September-October 2007)

Test/Disease Result
HIV Negative

Neurosyphilis Negative

EKG Normal

EEG Normal

CBC Panel (with Glucose) Normal Blood Chemistry

Thyroid Function Normal (one Calcium test high; calcium high because of heavy use of antacid (calcium) before blood sample)

VERS/BAERS (Evoked Potential) Normal

BPV (Benign Positional Vertigo) Negative

Spinal Tap with CSF IEP Normal in relation to serum levels (normal protein, normal pressure, no cells, no IgG/IgM abnormalities observed).

Lyme (ELISA):  Blood Sample taken September 21st, 2007. Negative.  Note:  I was taking Cefuroxime 500mg X 2 per day, starting September 5th, 2007 ending October 5th, 2007 for a presumed sinus infection.  Could this influence the result?

MRI Single hyperintensity lesion in the periventricular region in the left occipital area.  The lesion did not react to dye


Other Relevant Information:

I travel frequently to Puerto Rico for work.  Although I stay in higher-end hotels, I have been exposed to the outdoors and the local food. Since May of this year, I have been to Puerto Rico twice and stayed in San Juan and Guayama, on the south side of the island.

I traveled to Ireland (near Dublin) for work Sept 23-25, 2007.

I also lived in Brazil for two months, returning to the States January 2005.  

I have had chronic rhinitus for five years, apparently associated with reflux.

I have had life-long depression and see a psychiatrist at regular intervals.  Endogenous depression is in the family; maternal grandfather, undiagnosed depression, suicide at age 42; mother, lifelong depression on aniti-depressant medication since 1994.

I have had migraines for my whole life but these have diminished in frequency and intensity in my thirties.

BP:  135/85

Pulse:  80 bpm

Height 5’10”

Weight:  175 lbs.
Current Daily Medication:
Effexor ER 150mg/Daily.  I was taking 225mg daily for five years.  My neurologist requested that I drop the does to 150mg to see, if by off chance, an SSRI reduction would improve the vertigo/dizziness symptoms.  I reduced the dose on October 25th, 2007.
21 Responses
Avatar universal

Sounds exacty like lyme to me.  The ELISA is a worthless screening test for lyme.  It's very inaccurate.  Have you had a western blot?  If not, one from Igenex labs would be best.  Absolutely, the antibiotic could affect the results of a lyme test.  There are lyme-literate doctors in your state since it's endemic.  Most general physicians are not educated about lyme. That's why it's important to see a doctor who knows about it and how to properly treat and test for it.
Avatar universal
Thanks so much for your comment.  I have not had the Western Blot yet.  My Neurologist is convinced that the ELISA is accurate.  So, I am in the process of finding an expert who is willing to really look at Lyme as a possibility.  I have found that if doctors don't have an immediate answer, they think that you are making things up.  Very frustrating and upsetting.  I have heard that the Igenex lab has the most sensitive test.  Thanks again.  I appreciate it.
Avatar universal
Yes, they automatically assume "it's all in your head" if there isn't objective evidence.  You may want to visit lymenet dot org and post under seeking a doctor.  You could post what you posted above and see the responses you get.  There are 2 lyme doctors in western PA.  Don't know what part you are from.
Avatar universal
Yes it does sound like lyme, but late stages of lyme. I went through some of the symptoms you have and never tested positive to lyme until after I had finished my antibiotic treatment. My doctor had no idea what was wrong with me. In the beginning I had pins and needles in my feet and hands. Then I had a headach that would kill a moose, the pain went across my eyebrows and down the side of my face and into my jaw. That lasted about 3 weeks, no treatment. I had visual aurora, that passed, still no treatment. I had bells palsy for a week, that passed, still no treatment. I lost motor skills in my left leg and did the toe drag for about 3-4 days. The whole time I'm doing research on Lyme disease online. I kept telling the doctor I thought it was Lyme. But because all test were coming back normal and or negitive, he wouldn't buy it. Finally he gave in and put me on a antibiotic regiment. That was 4 years ago. And believe it or not, I'm having some of the symptoms again. Here we go again. Just thought I would share some of the symptoms I had, maybe they'll help.
293157 tn?1285877039
Wow...does this ever sound familiar to me...I've had all sorts of symptoms for a couple of years.  They did test me for Lyme when I was in the hospital...not sure what kind of test..but it came back neg...I wonder if I should ask my Dr for the other kind of test....thanks
Avatar universal
does anyone have late stage lyme with normal routine blood work - i.e., kidney, liver, thyroid, full chemistry...?? yet very ill to the point of being bedridden with lyme??? if so, has any doctor ever explained how this can be? Desperatly wanting to understand this and wanting to not have to explain myself to doctors who look at normal blood work and dotn believe i am really ill. Please help!!
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