About this Blog
~Hi, my name is Courtney. I was a full time college student, starting to be a dancer, and used to work with kids part time, living on my own until my illness disabled me.
~I became sick in 2005. I created this blog in the summer of 2006 to record my "headache" diary and to see if anyone finds it interesting.
~12/2006 I lost my job then after, failed a year of college.
~2/2007 Dx Lyme Disease with Bartonella: prescribed 8 months of oral antibiotics. I'm not even sure if I ever had the Lyme Disease.
~11/2007 The doctor took me off medicines while I was still improving but not fully recovered.
~6/2008 Dx Chiari I Malformation by a neurosurgeon in Beverly Hills.
~8/2008 Decompression and Lamenectomy helped 80% of my problems.
~2/2009 Dx Hypermobility by an Orthopedic Surgeon/School Doc: Started PT, dancing, going to school and working.
~6/2009 Started working full time as an Infant-Toddler teacher, which requires lifting. Dancing part time, maybe I'll finish school eventually...lol
~12/2009 Dx Chronic Sinusitis: Stopped dancing due to constant infections.
~2/2010 Sinus Surgery & complication: Severe Epistaxis: Became severely anemic.
~3/2010: Dx Ehlers Danlos Syndrome: by Geneticist
~4/2011: Switched jobs, now work at a Pre-K teacher for 3 and 4 year olds. Less lifting!
~5/2011: Started PT and exercising again
petechie
anyone get this? got it all over my body., Dont know if its related to 1)a nasty sunburn i got in Mazatlan or 2)not taking my antibiotics for a couple of days
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13 comments:
One cause could be from low platelets which Lyme can cause. I'd go get it checked out by my doctor just in case.
F.
Hi Courtney
Any of the cycline ABX -Doxi- Mino ect will increase sun burn -
It is Super Important not to eat ANY citrus or cranberries while taking
these abx --Even tiny amounts of citrus (lemon in tea) can cause
the sun burn effect to be Much worse--
This bad effect can happen Quickly --Hours --
Google -- Photo Toxic --
the skin damage caused by this is some what permenite so
be careful --scars
Sun Block dose little to protect you in this condition-
There is one sun block from Austriala
that is supposed to help- Green Lizard --
I have not used it tho so I cant say-
I can tell you from experance that the Photo Toxic reaction
can get Very Bad--you dont want to go there -
Hope this helps--Jay--
Yeah but "petechia" is VERY different in appearance from sun burn...
Hey....no you would definitely know if this was a "sunburn" or petechiae...
I had this type of rash on my wrist...
HOWEVER it can indicate another disease such as:
Rocky Mountain spotted fever, meningocccal disease, staphylococal toxic shock syndrome, and streptooccal toxic shock syndrome, Chronic Hepatitis C...etc...were just SOME of the diagnosis's thrown at me!
I had just started antibiotics for Babesiosis when this rash appeared...but they (They meaning the Infectious disease control at the hospital) decided that since I felt no better in 8 days of Babesia treatment= I didnt have it! Idiots. lol
Where is the rash/what does it look like??
Anyway...definitely see your LLMD, and get a blood test..just basic stuff like your RBC, WBC, Hemoglobin, Hemocrit, Platelet Counts...etc....If something is "wrong" most likely one of those may be off.
Feel better!
well its mostly around my sunburnt areas on my stomache, back, and less but still on my legs, They look like red pen point spots. I remember researching red spot under skin a while back cuz i had 3 on my nose and i was starting to have bruise like spots as well on my legs. The "bruises" seemed too even, small, and dark to be a real bruise. I'm thinking it has something to do with the bacteria that is inside of me.
I'm going to my doctor today at 11:30 since my neck is hurting really badly (cramping up/stiff) and i have a very low tolerance to pain. even the pressure of my little dogs foot on my arm hurts pretty bad.
but my sunburn was pretty bad. really defined. so i'm also thinking that sometimes you can get petechaie from injury and that could be my injury or something.
anyways we'll see at 11:30
Hey,
Good to hear you're going to your doctor. The brusing under the skin made me think of this one person who was vitamin C deficient...that I read about a while ago who also develoed a petechiae reah around it....
However, Lyme can do weird things. I get brusing on my knees and legs, randomly, for no reason at all my knee will turn purple, and then it will hurt more.
So It could definitly have sometime to do with Lyme, has it been determined that you definitely have Lyme now?
When I had the Petachiae rash on my wrist--I just had to wait it out anyway. ANOTHER interesting thing--is that you recently started your Zithromax, even though your dose is low, my rash on my wrist did not develop until my babesiosis was being treated.....
Let me know what you find out!
the doc said it sounds like bartonella so i got blood taken and i'm now on clarithromycin
huh...interesting the symptoms of lyme and co-infections are interchangeable, but the rash...google pics of "bartonella" rash...and then google pics of "rocky mountain spotted fever rash...At least if its the kind of rash I was thinking of, that I have seen....it looks more like RMSF.
Hope you feel better on your new meds :)
well i see him again next week to get the results and check up on my new meds. and i've been researching alot so i'm gonna bring in all my symptoms list next week and things i could have. whatever it is i'm glad hes treating me based on my symtoms and not tests.
i'm gonna drop out of school. sortof. i'm going into the disabilities office tomorrow for my intake interview and i'm going to discuss options. Because i'm just too ill to do anything. i'm going to try and get incompletes in my classes so that it wont look to bad on my record and i can work on the assignments over the summer. and then i wont have to pay back financial aid.
Hey, yes, I am glad you found a compassionate doctor---however, you need an extensive workup, not focusing so much on an LLMD and Lyme, but maybe on EVERYTHING. Idealy, getting admitted into an ER and into a hospital, and getting everything run in a matter of 3-5 days would be great...instead of going around to all different specialists for EVERY one of your symptoms but do what you have to do. If you havent done so already, see a Neurologist for neurological problems, a Gastroenterologist for your digestive and stomach problems, see an Infectious disease Specialist--you mentioned to me once you traveled to a foreign country (Ethiopia?)...dont go to this Infectious disease doc for Lyme, but to have ALL other Infectious disease causes ruled out, Lastly, see an Immunologist- get a full immune work up as well as testing for heavy metals. And...if you still have some time left--see an endocrinologist while your at it.
I know this is a LOT...but seeing these doctors is ALL part of the "Clinical Diagnosis of Lyme"---ruling out Everything else, will help your LLMD, because even if your Lyme tests cease to show anything significant...well he can go with "I know for sure she doesnt have disease X Y or Z"...etc...and this was get you the diagnosis of Lyme and the RIGHT dose of abx. Zithromax at 250 a day is NOT Lyme treatment!!
I am happy he switched your med today---whats the dose this time?
Hang in there, its going to be okay...even if these "other" docs find nothing, just let it brush over your head...the more they DONT find confirms the more likelihood that you have Lyme and CO-infections..
God Bless,
Jess
Just have to say that I agree with Jess. I was tested for sooooo much stuff before I got my IGENEX lyme test back positive, including a negative western blot, bone scans, PET scans MRI's, CAT scans and a whole bunch of other stuff . All of them came back negative, which was good but frustrating. I step closer to the right diagnosis if you can eliminate other possiblbe causes. Maybe there more than one bugger working together to make us miserable...may as well test for them ALL and send them packing.
A negative result can give as much information as a positive at this point .by ruling out other conditions
catscans nothing
full blood panel blood nothing
malaria smear nothing
thyroid negative
immune test negative
great husband positive
i'm on clarithromycin 500mg 2x a day. hes working me up. he didnt give me more than 250zithro because i was improving alot. but then i stopped getting better and slowly got a little worse again.
i'm still in line for an mri. we'll see.
You DONT have CFS or FIBRO because they are "umbrella" diagnoses' for other things...you are told you have Cfs/Fms when everything else is negative, and you are still sick and the doctor is tired of hearing about it....thats really the bottom line. Both TERMS exist as definitions, Chronic Fatigue meaning being tired even with adequate rest, and Fibromyalgia, meaning persistant body, muscle and joint aches (where they dont know the cause). Dont accept either of these as a diagnoses, ever.
I have had over 900 sheets of tests in my medical folder run for different diseaes---I just saw a new doctor today, he had to CANCEL his 4 other appointments this afternoon to just see me ALL DAY to go over all of my bloodwork--He couldnt believe all of the diseases that were considered, when I am from Long Island, NY, had a Bullseye Rash THREE times, and had all Lyme symptoms---this was so obviously Lyme staring them right in the face, yet no one would test because "You are TOO SICK to have Lyme disease."
EVEN after this doctor went over EVERY page of blood work--he STILL sent me to 3 other doctors today for MORE blood work. He took 12 more tubes of blood to send to various labs, he refferred me to another Immunologist, Rheumatologist, Hematologist, Allergist, and Gastroenterologist....SEE, even a FULLY diagnostic severe case of CONFIRMED Lyme and Co-infections like mine--you still need to keep on checking for other things happening that COULD be complicating the situation.! He ALSO is re-doing all of My Lyme tests, even though they were just re-done one month ago and all 4 tests were highly positive---this is what a GOOD doctor I believe does---makes sure everything is going right. I will also be having another Spect Scan with Dr. Brian Fallon, and more Neurological Testing at the end of the month.
The tests you have done so far are a START...but there are just so many things that can go wrong:
tests to get:
Western Blots from: Stonybrook Lab, MDL, Quest and Labcorp
PCR (Blood AND Urine *Not LUAT) : Stonybrook and Igenex (do Quest too if they offer it)
Spinal Tap: Lyme Titers, Meningitis, MS...etc
Babesiosis: Antibody RNA/DNA, FISH TEST: Stonybrook and Igenex
Bartonella: Igenex, Stonybrook, Quest
Ehrichliosis: Stonybrook. Igenex, Quest
Spect Scan: Local Hospital or Neurology Center
Neuropsychological Testing: A Neuropsych. who is Lyme literate
Neurologist: Neurological Testing, MRI, CT scan, reg. neuro workup
Immunologist: Heavy Metal Testing, Immunological Workup
Gastroenterologist: CT of abdomen, Endoscopy, Colonoscopy
Infectious Disease: FULL workup for all causes ( about 110 diseases lol)
Genetic Testing: HLA Rosetta Stone Lab
Hematologist: Only if your blood counts are off...
Allergist: Tests your blood for all triggers...does "antibiotic" testing to see which you respond well to also..its very helpful as far as treatment goes
....at this point, even if ALL of these tests say "negative"---its helpful to know what is wrong, and what else to look for...these were some of the original tests I had done in my first years of being sick...and ALL showed a LOT...nothing came back "good"...all had deficits, and "off results"...and at least than I knew what diseases that I DID NOT have :)
Good luck!
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