I will try to describe these symptoms as simply as I can. My vertigo..the entire room does not spin. If you stood still and looked straight ahead your entire field of vision would move quickly to the left, then quickly back to the right, repeating at a faster and faster pace. My family says my eyes move as if I am reading, but very quickly back and forth. Complete loss of balance...I usually end up sitting on the floor wherever I am when this happens. It passes within a few minutes and happens several times a day. I have checked my BP and Blood sugar during an 'episode', ruled both out as contributors.
I suffer with the constant feeling of a low voltage electrical current coursing through my body [it follows the nerve pathways] This has been discussed here recently. The sensation NEVER goes away. I have had this for many years.
I love a good stretch in the morning...but I try to avoid doing this. IF I stretch [while standing or sitting] I get extremely light-headed and feel 'fuzzy' all over. As the 'fuzziness' subsides I have small body/head tremors. All of me tremors. It almost feels like a seizure of some kind.
And finally...I have had a headache for about 10 years. My head aches ALL THE TIME. It never goes away and will quite frequently become a migraine [I take a high dose of Elavil 125mg nightly, it's the only med that works] Nothing has ever stopped the headaches, even when I've had surgery and been on morphine or other narcotics, I've still had headaches, narcotics sometimes make them worse.
Any comments? Any suggestions?
Thanks for being here....you are all wonderful! Sharon >^..^<
Posted by pattilynn (Member # 8065) on :
The eye thing sounds like nystagmus. You might want to google search this. It's neurological and can be caused by lyme.
Posted by liz28 (Member # 4946) on :
If you want to check and see if certain drugs affect your symptoms, you can take an acne prescription called doxycycline for Lyme, and an herbal supplement called artemisinin for babesia.
The artemisinin should create a change in a week. You can get it from www.vitacost.com, Allergy Research Group, and the Vitamin Shoppe. The doxy can take a couple of months to cause a major change, but at least you'll be able to see if it helped at all.
Doxy is regularly prescribed by dermatologists and travel doctors. People take it every day for years in tropical countries, to avoid catching malaria.
If you want to check for chronic yeast overgrowth, try herbal liquid extracts of either coptis or goldenseal (Herb Pharm manufactures both of them), and/or very good probiotics.
Bartonella can cause a perpetual headache. If your doctor has been with you for years, there should not be a major problem with prescribing a week's worth of rifampin, just to see if it changes anything.
Posted by bettyg (Member # 6147) on :
Welcome newbie Sharon; I've pasted some newbie info at the bottom of your note.
Sharon, please use enter often and double space EACH paragraph for us neuro lymies so we cn rad this. We can't read continuous paragraphs.
quote:Originally posted by sharonlacouture:
I will try to describe these symptoms as simply as I can.
My vertigo..the entire room does not spin. If you stood still and looked straight ahead your entire field of vision would move quickly to the left, then quickly back to the right, repeating at a faster and faster pace.
My family says my eyes move as if I am reading, but very quickly back and forth.
Complete loss of balance...I usually end up sitting on the floor wherever I am when this happens.
It passes within a few minutes and happens several times a day.
I have checked my BP and Blood sugar during an 'episode', ruled both out as contributors.
I suffer with the constant feeling of a low voltage electrical current coursing through my body [it follows the nerve pathways] This has been discussed here recently.
The sensation NEVER goes away. I have had this for many years.
I love a good stretch in the morning...but I try to avoid doing this.
IF I stretch [while standing or sitting] I get extremely light-headed and feel 'fuzzy' all over.
As the 'fuzziness' subsides I have small body/head tremors. All of me tremors. It almost feels like a seizure of some kind.
And finally...I have had a headache for about 10 years. My head aches ALL THE TIME. It never goes away and will quite frequently become a migraine
[I take a high dose of Elavil 125mg nightly, it's the only med that works]
Nothing has ever stopped the headaches, even when I've had surgery and been on morphine or other narcotics, I've still had headaches, narcotics sometimes make them worse.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
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 3 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 CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
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!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077.
You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US.
They fax the results and then about a week later send the actual pictures.
NO way to file for insurance since it's only a brief letter you get back from them even WITHOUT a 501 federal tax 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!
Any comments? Any suggestions?
Thanks for being here....you are all wonderful! Sharon>^..^<