Hi I am new here I just was diagnosed with Lymes asbout a month ago I have been suffering for along time since early 1980s. I was diagnosed with everything you can think off. Starting with MS because they found I had Optic Neuritis and experieced alot of different numbness all over my body. Also Lupus because I had the butterfly rash over the bridge of my nose and my cheeks and forehead. Thoraxic Outlet Syndrome they remove my first rib I wonder if this one was related or not. I wondered however, if the arthristis (sp) all over my joints is do to the lymes or to the post polio as the Dr. claims. Severe Fibromyalgia, RSD, which is a burning of your skin all over your body, which is something neurological. I do sufferer of trigemeral Neuralgia which is horrible very painful and it last several months at a time. By the ay it does attack my teeth as it attachs the muscles of my jaws and cheeks forehead. Head becomes numbed. I also have problems with my heart, I get arithmya, and angina I have been in ICU because of it twice two years ago. They didn't know what was going on. Now regarding my legs, this is new about three or four months if I sit for more of 5 or 6 minutes my legs go death on me. I use the word death, because I do not feel the pins and needles, that numbness brings with it. They are completly gone. I have to rubb them several minutes 5 maybe more. in order for the energy to returned back to them. It is very scary now starting to happen when I am standing up in one place for more then a few minutes. Does anyone has this experience? Please if so reply, you can e-mail me if you like. I am glad that this place exists now I can read and become inform. Thank you Posted by bettyg (Member # 6147) on :
Breaking this up for us neuro lymies to read.
Please hit enter often and double space paragraphs on replies/posts. Thanks for helping us to read so we may help you Elie. Bettyg
quote:Originally posted by Elie777:
Hi I am new here.
I just was diagnosed with Lymes (Elie, we have Lyme not lymes name drs. use ok)
about a month ago I have been suffering for along time since early 1980s. I was diagnosed with everything you can think off.
Starting with MS because they found I had Optic Neuritis and experieced alot of different numbness all over my body.
Also Lupus because I had the butterfly rash over the bridge of my nose and my cheeks and forehead.
Thoraxic Outlet Syndrome they remove my first rib I wonder if this one was related or not.
I wondered however, if the arthritis all over my joints is do to the lyme or to the post polio as the Dr. claims.
Severe Fibromyalgia, RSD..reflex sympathy dystrophy, which is a burning of your skin all over your body, which is something neurological.
I do sufferer of trigemeral Neuralgia which is horrible, very painful, and it last several months at a time.
By the way. it does attack my teeth as it attachs the muscles of my jaws and cheeks forehead.
Head becomes numbed.
I also have problems with my heart, I get arithmya, and angina I have been in ICU because of it twice two years ago. They didn't know what was going on.
Now regarding my legs, this is new about three or four months if I sit for more of 5 or 6 minutes my legs go death (dead by Betty) on me.
I use the word death, because I do not feel the pins and needles, that numbness brings with it. They are completly gone.
I have to rub them several minutes 5 maybe more. in order for the energy to returned back to them.
It is very scary now starting to happen when I am standing up in one place for more then a few minutes.
Does anyone has this experience?
Please if so reply, you can e-mail me if you like.
I am glad that this place exists now I can read and become inform. Thank you
Elie, so happy you found us! Boy, you have symptoms/diagnoses galore.
I'm going to copy my newbie's list which has TREEPATROL'S NEWBIE LINKS in it & other stuff.
Check out the site of LYME SYMPTOMS ... I saw so many as I read your list!
Have you had the western blot igm/igg done by Igenex, MD, or Bowen labs? I'll include that info too. ok.
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!
Posted by psano (Member # 7785) on :
Hi Elie,
I experienced a lot of numbness, but it usually occurred when I woke up in bed, usually during the middle of the night.
It started w/my left hand then both hands, then a whole arm, then my feet. The worst was when I woke up and couldn't move anything. I also felt as if I were barely breathing and my heart was barely beating. It was frightening and I was pretty sure that I was dying.
All I can say is that it's mostly gone now after being on abx (Ketek and Bicillin LA) for almost 6 mos.
I had most of the other sx you described as well...all kinds of eye problems, tooth pain, arthralgias, weird heartbeats, flu like sx, rash, stiff neck, shooting pains in various places, tremors, droopy eyes, ringing ears, brain fog, and on and on.
From what you describe, I think you definitely have LD. I hope you have a good LLMD. You'll get better.
Patti
I have to add waking up and feeling my legs and abdominal area up to my hips numb like you described. I think the creepiest besides the whole body numbness was when my chest and neck were very numb. I was afraid that I'd stop breathing.
I hope that's all in the past.
Posted by bettyg (Member # 6147) on :
duplicate...it finally showed up now! I just lost everything I did earlier; went to never-never land! Bettyg
Posted by Elie777 (Member # 9040) on :
Thank you Betty for your help narrating my letter to all of you. Yes, I see how it is so much better, and easier to read, with the paragraphs. I have already taken the Igenex test Western Blot I think that is the name of test. It was positive I am going to Florida to see Dr. Schaller. I have heard that he is a very good Dr. specially for chronic lyme suffers what do you think? You know I can't seem to be able to do a paragraph how do you do it? tab does work . Thanks again, much Love
Posted by AZURE WISH (Member # 804) on :
Ellie,
Please take out the dr.s name in your post.....
You can use the first initial like Dr. X but that is all.
Because of all the political issues surrounding lyme we can not post our dr,s names on the board.
They are trying to take away the medical licenses of the few dr.s actually willing to give us adequate and appropriate treatment...
So for the sake of the llmd, his current and future patients .... we do not post names.
Please go up to the top to the little paper and pencil icon and edit your post.
Thank You Posted by bettyg (Member # 6147) on :
Elie,
To make a paragraph shorter, please hit the RETURN/ENTER button.
As suggested by Azure, please edit your post showing drs. last name to initial only! thank you; we must protect our LLMDs.
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