A few years ago (2-3) I went to a park here on Long Island NY with my husband and daughter. As we were LEAVING the park there was a sign at the end of the hiking path warning of ticks and lyme disease..
Soon after my husband got sick and then the rash came and then blood test confirmed lyme. A few days later I got sick also. Same exact symptoms as him.. I however tested negative for lyme. (well I was told the ELISA was positive and Blot negative)
I since have had problems that some are constant and some come and go. Lately though I am so much worse I do not know what to do with myself. I started getting noticibly worse in late December and the last few weeks are just horrible.
To sum up my symptoms:

Brain fog: I can look at someone I have known for years and have NO idea what there name is. I can be driving someplace and have no idea how to get there all the sudden. I have "episodes" of feeling like I'm in a dream..or disattached to myself. Like I'm aware of whats going on..but I feel confused. (I am scheduled for seizure tests).

Pain: oh..the pain. I scream out and cry from the pain. It is in my hips, it is in my knees, my feet it is just every where. It is like an ache and then all of the sudden it feels like someone is slamming me with a hammer. It is horrible horrible pain.

I can not move my neck sometimes because it gets so stiff and painful. After sitting more than a few minutes I can not stand on my feet without horrible pain and then it eases up. On a typical day by the evening time I walk like I am 90 years old. Slow and bent over. I am 34.

Dizzy: started as vertigo July 03 and has since become a sudden "jolt" and then a falling feeling. I also get intense motion sickness from barely moving. Sometimes just turning my head will make me feel motion sick. I can not watch my daughter on her swing without getting sick. I also sometimes feel like my brain is shaking..or vibrating. Weird I know but I don't know how else to describe it.

My toes and my fingers go numb. Within the last 10 days the left side of my face has gone numb three times.

Monday night I had massive heart palpitations followed by a falling dizzy feeling and then was fine. Next day bad chest pains. I had a complete cardiology work up about 6 months ago because of the dizzy spells so this time they only did an ekg. Normal.

I get the feeling of a UTI but no infection found..no pain only the urgency and frequency.

Vision problems include what I call ghosts. If I look at something and then look away I see a dark image of the shape of what I was looking at.

I have spots on my back that are numb and feel crawly bugs sometimes. This comes and goes.

I have been to a cardiologist, a rheumotolgist, my primary dr and a neurologist. Was looked at for MS, Lupus and sarcoidosis. Negative. The only thing found is slight arthritis in my hip and high normal ACE levels with one lab normal with another..(they thought possible sarcoidosis) and they said possible Fibromyalgia.

I am to have bloodwork done for the neurologist now. Lyme is included. It says "lyme antibodies Elisa, Western blot and Imugen" What is Imugen? I thought it was just a lab..is it a seperate test they offer?

Any advise or opinions are more than welcome.

Thank you for taking the time to read this.

Kim

You sound like you could have any number of tick born diseases. If you've been reading, you know by now that there are many.

Your only hope of finding out for sure is by seeing a doctor who knows about these diseases.

Post to Seeking a Doctor if you really want to find out if you need treatment for TBD's.

Keep reading. There is an awful lot to learn and know about these diseases. I'm in my 3rd year of dealing with them and I'm finally feeling better with a lot of trial and error and finally being diagnosed and treated for Babesia.

I wasted a lot of time seeing doctors who only treated Lyme. They were willing to treat long term but didn't look for any other TBD's.

Good luck to you,

Try posting on the "seeking a doctor" forum and someone in your area can probably help you find one.

I would test also for the co-infections now with your western blot igm & igg. I didn't last summer; having them done now.

You also mentioned felt like bugs crawling on you, look for this topic post by BITING BACK on MORGALLONs. She has extensive stuff there including links of showing what these live parasites look like.

So glad you found this site like we all did. You will get a lot of reputable info here.

The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 2 USA's Lyme testing labs:

IGENEX LAB:
797 San Antonio Road
Palo Alto, CA 94303
1.800.832.3200.

(If the early test, called IGM, is negative; the later test IGG is NOT done!)
Please see their web site: www.igenex.com for their current prices and

to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your FROZEN blood taken EARLY in the week so it doesn't sit in post offices!

Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!

NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers.
Medicare patients do NOT have to prepay!

OTHER LAB: MDL from NJ, www.mdl.net
see their site; they too require their own form. NO prices are listed; you must call their 800 no.

Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.

NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).

FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!

Yes you need a lyme literate doctor........

Also get tested for the co-infections.....babesia, ehrlichia etc.(co-infections are usually treated first).

Good Luck MrsSAM

quote:

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Originally posted by Knj822:
I recentely found your board and I have been trying to read as much as I can. There is so much amazing information here and I thank you all for such a wonderful site.
I am hoping that someone can read my story and see if you think I should push this harder or start looking in a different direction.

A few years ago (2-3) I went to a park here on Long Island NY with my husband and daughter. As we were LEAVING the park there was a sign at the end of the hiking path warning of ticks and lyme disease..
Soon after my husband got sick and then the rash came and then blood test confirmed lyme. A few days later I got sick also. Same exact symptoms as him.. I however tested negative for lyme. (well I was told the ELISA was positive and Blot negative)
I since have had problems that some are constant and some come and go. Lately though I am so much worse I do not know what to do with myself. I started getting noticibly worse in late December and the last few weeks are just horrible.
To sum up my symptoms:

Brain fog: I can look at someone I have known for years and have NO idea what there name is. I can be driving someplace and have no idea how to get there all the sudden. I have "episodes" of feeling like I'm in a dream..or disattached to myself. Like I'm aware of whats going on..but I feel confused. (I am scheduled for seizure tests).

Pain: oh..the pain. I scream out and cry from the pain. It is in my hips, it is in my knees, my feet it is just every where. It is like an ache and then all of the sudden it feels like someone is slamming me with a hammer. It is horrible horrible pain.

I can not move my neck sometimes because it gets so stiff and painful. After sitting more than a few minutes I can not stand on my feet without horrible pain and then it eases up. On a typical day by the evening time I walk like I am 90 years old. Slow and bent over. I am 34.

Dizzy: started as vertigo July 03 and has since become a sudden "jolt" and then a falling feeling. I also get intense motion sickness from barely moving. Sometimes just turning my head will make me feel motion sick. I can not watch my daughter on her swing without getting sick. I also sometimes feel like my brain is shaking..or vibrating. Weird I know but I don't know how else to describe it.

My toes and my fingers go numb. Within the last 10 days the left side of my face has gone numb three times.

Monday night I had massive heart palpitations followed by a falling dizzy feeling and then was fine. Next day bad chest pains. I had a complete cardiology work up about 6 months ago because of the dizzy spells so this time they only did an ekg. Normal.

I get the feeling of a UTI but no infection found..no pain only the urgency and frequency.

Vision problems include what I call ghosts. If I look at something and then look away I see a dark image of the shape of what I was looking at.

I have spots on my back that are numb and feel crawly bugs sometimes. This comes and goes.

I have been to a cardiologist, a rheumotolgist, my primary dr and a neurologist. Was looked at for MS, Lupus and sarcoidosis. Negative. The only thing found is slight arthritis in my hip and high normal ACE levels with one lab normal with another..(they thought possible sarcoidosis) and they said possible Fibromyalgia.

I am to have bloodwork done for the neurologist now. Lyme is included. It says "lyme antibodies Elisa, Western blot and Imugen" What is Imugen? I thought it was just a lab..is it a seperate test they offer?

Any advise or opinions are more than welcome.

Thank you for taking the time to read this.

Kim

[This message has been edited by Knj822 (edited 23 March 2005).]

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I know there are at least two very good Lyme literate docs on L.I.

You can post on Seeking a doctor, or I think that the Lyme Disease Association site has a link for referrals. If you have not already, and I suspect if you've been lurking a while you'd know about this, but go to www.ilads.org and read the document entitled Diagnostic Hints and Treatment Guidelines for LD and other tickborne illnesses.