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New Member

Date Joined Oct 2009
Total Posts : 17
   Posted 10/7/2009 12:05 PM (GMT -7)   
I would like to know if any one experiencing the Lyme Rash if it stayed and never went away. My rash went away in five weeks but my friend has had hers for 3 yrs. Is this normal?

Forum Moderator

Date Joined May 2007
Total Posts : 35859
   Posted 10/7/2009 3:04 PM (GMT -7)   
Wow Sunshine!
I feel sorry for your friend. It would be an irritating reminder for me. I never did have the typical bulls eye rash, and so I have not done much reading on that. Wish I could have been of some help.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).

Regular Member

Date Joined Jun 2009
Total Posts : 367
   Posted 10/7/2009 4:10 PM (GMT -7)   
I have heard of the rashes reappearing after treatment. That is awful your friend still has the rash. Mine took about 6 weeks to completely go away. They are ugly aren't they?

New Member

Date Joined Oct 2009
Total Posts : 17
   Posted 10/8/2009 4:34 AM (GMT -7)   
When I had the rash, it wasn't just the typical bull's eye at one spot, it spread all over especially my torso, and was itchy burning and purple and it faded to a pinkish brown, is that what yours was like. My poor friend's is still purple and it is scabbed in places from scratching. It covers her whole body. She has a lot of neurological symptoms, more than me. Yes I have trouble with words, I stumble all over like a drunk etc. but hers is extreme. I don't know, she has aged terribly.

New Member

Date Joined Oct 2009
Total Posts : 17
   Posted 10/8/2009 4:49 AM (GMT -7)   
turn  Ps thank you traveler and lovelabs for answering me, I am just the new kid on the block. I have been suffering for nineteen months. I had to leave my job as Post Master of 28 yrs. cause I had terrible vertigo, and it just went on from there. I still don't have balance and walk with a walker or I look like a drunk rolleyes , and I don't even drink. I can't even imagine drinking. I have joint pain etc, face pain, it just travels around. One thing that I found hard to take was this electrical zing in my head every time I even turned my eyes slightly, has anyone experienced this. I also get this stabbing pain on the top right side of my head. What a pain tongue ! For a long time the doctors thought I just needed a pyschiatrist, which is fine with me, cause they couldn't find something concrete. I'm waiting to get tests done from Igenex. My symptoms all mimic MS but.....thankyou for listening.

Forum Moderator

Date Joined May 2007
Total Posts : 35859
   Posted 10/8/2009 2:12 PM (GMT -7)   
Hi Sunshine!
I'm so sorry to hear about your not being able to work any longer. As for me, I could no longer work at the ripe old age of 28.

!st I want ed to say that Lyme rashes are a strange creature. They can come in different shapes & severity. I never have had the 'typical' LD rash, although I have had plenty of rashes of 'unknown origin', and baffled several dermatologists. After all of these years.

If anyone has questions about a rash they are experiencing, there are several good places to see pics of Lyme related rashes. A lot of LLMD's sites have good pics. We had links to pics as well, then we lost our Newbies thread, which is where they were. I haven't checked yet to see if they have gotten put back up or not, though.

I have had the pleasure of experiencing that 'electrical zing' as well - have had that most of my life. It travels around my body with great efficiency!! This is fairly common with TBI's, at least the migrating part of it.

When I was a Junior in h.s., I had such knee pain for quite a while, that first i was put inot a leg brace & then when that didn't help much, my gp (who was a D.O.), scheduled surgery. Of course there was test after test first - but there was nothing found.

He was concerned that I could have torn some ligaments length-wise, so I had knee surgery. After-wards, He just couldn't get over the fact that I had the healthiest knee he had ever opened up!! We had no clue it was a TBI, but looking back it fits right in there with them!

Please be sure to post your results from Igenex when you get them. If you do use the search option, you can quickly locate a few posts to help you understand the results. Of course, if you have more questions - ask away!!! Someone should be able to help you understand!!

As far as listening - well, I believe that sometimes listening is the most important thing a person can do!!

Have you found an LLMD??
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

New Member

Date Joined Oct 2009
Total Posts : 17
   Posted 10/8/2009 3:05 PM (GMT -7)   
Hi Traveler, good to hear from you. What is a TBI, that's my first question before I forget it idea ? It is good to be able to laugh at ourselves sometimes, especially when it comes to my walk. My husband hasn't had a drink in 23 yrs so he teases me that he stopped staggering and now it's my turn. When I got home today there was a message on my machine from my long term disability, more tests to prove I should be off work. You pay in to that for years in case something goes wrong with your health. I just paid 200$ to have forms filled in by my doctor and sent to them just two weeks ago. I'll gladly go back to work but not sure what they will get me to do. smilewinkgrin Too funnny. I know I am still not diagnosed but it doesn't make me walk any better. I was so nice to get a response from you Traveller. Take care

Forum Moderator

Date Joined May 2007
Total Posts : 35859
   Posted 10/8/2009 4:44 PM (GMT -7)   
As you will see, TBI = Tick Borne Illness.
I also copy & pasted this list - I printed out a copy of this a few yrs ago, so that it would be handy to refer to.

Here is a list of Medical Abbreviations that are used on forums:

Abx = antibiotics
AB = antibody
Abd = abdomen
AC = before meals
Ad Lib = as much as needed
ANA = Anti Nuclear Antibody
ART = Autonomic Response Testing
Babs = babesiosis/babesia
Bart = bartonella
Bb = Borrelia burgdorferi
BBB = blood brain barrier
BID = twice a day
BIW = twice a week
BPM = beats per minute
BP = blood pressure
BPP = blood pressure and pulse
BUN = blood urea nitrogen
Bx = biopsy
CAT = computerized axial tomography
CBC = complete blood count
CC = chief complaint
CN = cranial nerves
CD-57 = Subset of NK cells
CNS = central nervous system
C&S =culture and sensitivity
C/O = complaining of
CRP = c-reactive protein
CSF = cerebrospinal fluid
DAW = dispense as written
DC = Discontinue
DDx = Differential Diagnosis
Dx = diagnosis
DTR = deep tendon reflexes
EEG = electroencephalogram
ELISA = enzyme-linked immunosorbent assay
EM = erythema migrans(Lyme rash)
ENT =Ear, nose, throat
EMG = electromyography
FISH = Fluorescent In-Situ Hybridization
GTT = Glucose tolerance test
Herx = Jarish-Herxheimer reaction
HBO = Hyperbaric Oxygen therapy
HBP =High Blood Pressure
HGE = Human Granulocytic Ehrlichiosis
HME = Human Monocytic Ehrlichiosis
HLA = Human leukocyte antigens
HDL = high density lipoprotein
HO = history of
Hx = history
HS = at bedtime
HPI = history of present illness
IC = between meals.
ILADS = International Lyme and Associated Diseases Society
ID = infectious disease
Inj = inject
IFA = immunofluorescent assay
IgE = Immunoglobulin E
IgG = Immunoglobulin G
IgM = Immunoglobulin M
IM = Intramuscular
IU = International units
IV = intravenous
LD = Lyme disease
LDF = Lyme Disease Foundation
LDA = Lyme Disease Association
LFT = Liver Function Test
LL = lyme literate
LLMD = Lyme Literate Medical Doctor
LP = lumbar puncture
MAC = maximum allowable concentration
MIC = minimum inhibitory concentration
MgD = magnesium-deficient
MRI = magnetic resonance imaging
MU = million units
NE = neurological examination
Neuro = neurology, neurological
NCS = nerve conduction study
NK = natural killer cells
NMH = neurally mediated hypotension
NP = nurse practitioner
NSAID = non-steroidal anti-inflammatory drug
N/V = nausea vomiting
OCD = obsessive compulsive disorder
QD = once daily
OTC = over the counter
OV = office visit
O&P = ova & parasites
PA = physician assistant
PCR = polymerase chain reaction
PO = by mouth
POTS = postural orthostatic tachycardia syndrome
PRN = as needed
PT = patient
PT = physical therapy
QAM = every morning
QID = four times a day
QM = every morning
QOD = every other day
RMSF = Rocky Mountain Spotted Fever
Rx = prescription
SC = subcutaneous (under the skin)
SOB = Shortness of breath
SPECT Scan = Single Photon Emission Computed Tomography
SX = symptom
TBD = Tick Bourne Disease
TBI = tick borne illness
TID = three times a day
TTT = tilt table test
TX = treatment
UA = urinalysis
UTI = urinary tract infection
VCS = visual contrast survey
WT = weight
WB = western blot
WBC = white blood cells
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

New Member

Date Joined Oct 2009
Total Posts : 17
   Posted 10/8/2009 4:48 PM (GMT -7)   
You are wonderful Traveller tongue , I am learning so much through you, thankyou. Then I can pay it forward and help someone else. I have much to learn. yeah God bless!!

Regular Member

Date Joined Jul 2007
Total Posts : 478
   Posted 10/8/2009 5:15 PM (GMT -7)   
I had mine for about a year. Infact, at the time I had it no one knew about LD and the doctor not knowing what it was, tried to burn it off with dry ice. OUCH!!!! after that I had another EM appear on my foot and another 16 years later.

New Member

Date Joined Oct 2009
Total Posts : 17
   Posted 10/8/2009 5:45 PM (GMT -7)   
Hi there, isn't that rash awful! Then I broke out with shingles! The first time I went to the doctor, he didn't even look at it and said that it was just hives. The next week I went into his office half nuts smhair took off my top and said,"There, that's what it looks like"! He though it was pityriasis rosea, which sounds very important so I went home and looked it up. It was an idopathic rash, meaning they had no clue what it was. That became my favorite word of the year IDIOPATHIC rolleyes ! It wasn't til much later that I saw pictures of Lyme rashes and knew what it was that I had. I had never heard of LD. We don't have any doctors in the whole area that treat it. Thankyou stutterbug, cute name, for responding tongue Sunshine4ere
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