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.

[legend433]

Hello: I have had Lyme for over 20 years now, for the past 3 years it has been quite a struggle. I do deer fencing for my work, so I get bit a lot. Do some hard core antibiotics and probiotic at the same time to keep your gut healthy. Then get set up with a knowledgeable Homeopathic Doctor who can take you through a treatment  program to get you organs healthy then take out the remaining Lyme(whatever bacteria they find). You may also want to try some vibrational healing therapy(Indigo). This is a new technique, the military had kept it under wraps for years, but now some doctors have it, it works wonders, all though you may get some Hex reactions from it.
Peace and Light to you, Rob

[LymeLion]

Google "Advanced Topics in Lyme Disease" by Joseph J. Burrascano Jr. M.D. read or download for free. It is a wealth of info
Peace

[LymeLion]

Hi, Very same situation with me but here are the facts:
Call IGenex for a free test kit 800 832 3200. Make sure you select the $470.00 test which includes Western Blot IGG  code 86617.

This will reveal the chronic lyme bacteria if you have it.I was tested 9 years ago with the ELISA it came back negative and I was then diagnosed with Fibromyalgia and I simply got worse and suffered for 9 years. Now I finally got the test back positive for Chronic Lyme and am on my way to recovery. But be careful because you need aggressive antibiotic treatment. I started bicillin LA   IM injections.

Also, please rent or buy the documentary "under our skin"
Peace

[LymeLion]

Hi, Very same situation with me but here are the facts:
Call IGenex for a free test kit 800 832 3200 . Make sure you select the $470.00 test which includes Western Blot IGG  code 86617.

This will reveal the chronic lyme bacteria if you have it.I was tested 9 years ago with the ELISA it came back negative and I was then diagnosed with Fibromyalgia and I simply got worse and suffered for 9 years. Now I finally got the test back positive for Chronic Lyme and am on my way to recovery. But be careful because you need aggressive antibiotic treatment. I started bicillin LA   IM injections.

Also, please rent or buy the documentary "under our skin"
Peace

[Marinella82]

You just described the story of my life.  Everything you said I have and I have been living with for the past year and half.  Did you ever have a spinal tap?  My blood test were inconclusive for lyme and positive for Erlichia so they put me on anti-biotic for a month then was negative but still had migraines months later I started developing all your symptoms including muscle spasms, fatique and fainting spells as well as tackycardia.  I had the feeling like the back of my head was on fire and my head was going to explode but I had a normal temperature.   I had every test in the world done and all came back normal so they did a spinal tap.  They did a DNA test on my spinal fluid but the results take 3 months and it came back positive for Lyme Disease.  I also developed Vasovagal Syncope wich was made positive after a tilt table test. My doctors believe that the Lyme Disease attacked the Vasovagal vein.  I think you should get tested agin if it still comes back negative ask to get a spinal tap but they are painful and risky.

[donjoe341]

I too have been suffering with all of the same symptoms for a few years. Doctors can not figure out what is wrong with me. My entire family has been ill. We all got tested at an endocrinologist and we all have low thyroid, blood sugar problems and poss. adrenal problems. She thought is was a great idea to go to a lymes specialist to have it thoroughly checked. She has never seen everyone in one family have the same conditions at the same time before and said lyme can cause all of our conditions. Here is a web site to go to find a good lyme specialist.
flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_pm;d=K;t=00109402
Many lyme specialists do not take insurance. If you want to know why and more about lymes disease I think you should all watch the movie documentary Under Your Skin. It will explain everything you need to know that your doctors won't tell you. It is a must see if you are feeling ill. Message me if you need more info.

[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.

[kris1973]

Wow. I have almost all of those same symptoms. I was just tested for Lyme Disease, and am waiting on results. My cousin was just diagnosed with it as well. I have had just about every test imaginable. Ruled out MS, Rheumatoid Arthritis, Lupus, Hepatitis, etc. I am hypothyroid, and have 4 children, so my docs all want to tell me that any symptoms I have are related to these 2 facts.

Good luck. I hope you get some answers!

[peachescream53]

I know what you are saying. I have not been tested but a member of my faimily has. They also came up negative, however we were at a doctor that knows lyme and she ran other tests with this and said due to the results and symptoms she has lyme. since then I have been told it is chronic lyme disease.  Joints (all) swollen has trouble writting, nausea, dizzy, weird rashes. feet hands cold. Hot and cold flashes, fevers, migraines.Extreme fatigue and concentration problems. Has pain all the time medication doesn't seem to help. There are doctors that understand and deal with lyme. Of course there are the ones that make you feel like an idiot.  Like patsy said all in your head.  

[patsy10]

Usually all boodwork is normal with lyme.  That's why doctors don't believe people and say it's all in our heads.

[jdemps]

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!!

[Wobbly]

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

[ddingus1]

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.

[patsy10]

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.

[Marc61]

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.

[patsy10]

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.