Do I have Late Stage/Chronic Lyme

[Marc61]

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.

[Yamaha3]

Im 25 and have had all the symptoms listed on all of these postings. I have been going to doctors for years when symptoms have got bad enough. Everytime I had test results turning up negative. How convienient right. Anyways, about 6 months ago I started having symptoms that were affecting my head, making me dizzy, concentration problems, memory problems ect. I got really worried and started seeing doctors again. I had an MRI, CT scan, CAT scan, heart tests, and even a lyme test at the hospital. Everything came back normal again. Then I talked to a friend who's Mom had lyme, and found out her story was very similar to mine. So I got some information from her and went where she did. This place is the best in Wisconsin and has Lyme literate doctors. After seeing this doctor I was givin a Igenex Lyme test. 3 weeks later I had a positive test result. The moral of this story is that non Lyme literate doctors know nothing about it and you need to find a doctor that knows about this disease. Igenex is the way to go>

[irishgirlsrock]

I was just diagnosed after having all of your symptoms for 10 yrs- I went to countless doctors and was misdiagnosed with everything from MS- to MG- to Lupus to doctors telling me it was "all in my head"...well- after going with my gut instinct- I went to a LLMD and after one blood test- (western blot) and one visit to this doctor- I was diagonsed- FINALLY !

You definitely sound like you have late stage-

I would find a LLMD in yoru area and demand to get a western blot blood test for lyme-

If I hadn't stuck to my guns and pressed for this- I'd be dead right now.

GO TO A LLMD....(make sure he/she is really good at what they do and are not afraid to treat you)

God Bless !  And get to a doctor !!

[midnightdoc]

I have all the same symptoms since April and had a lumbar puncture Thursday and waiting on the results. I have hypercalcemia and they can't figure that out either. I had brain mri,ct scan, mri of lumbar,thoracic and cervical spine. Ct scan of stomach and abdomen, full body bone scan and thyroid scan. They show degenerative joint and disc disease with 3 lumbar bulging disc and 2 bulging disc in the neck. I have developed bad nerve problems. # pinched nerves in my neck, L5 and S1 nerves pinched,  both ankles,both elbows and bilateral carpal tunnel. I head to Mayo Clinic November 10th.

[HIRDY]

There is a test called the MELISA test throughout Europe,,, and I belive you can have this done in US for Lyme Screening that promotes to be far more accurate than other tests

http://www.melisa.org/borrelia-lyme-disease.php

Regards

Peter

[email protected]

[Dave0272]

You all should get evaluated by doctors(LLMD)  that specialize in Lyme Disease.

Go to the Lymenet.org website and read into the discussion boards.  You can seek out some good resources & find doctors educated in the treatment of Lyme as most general practice doctors are not.

Dave

[patsy10]

Don't let them tell you it's in your head if the test cames back negative.  The test may very well be negative whether you have it or not.