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
doc apt tomorrow
i'm going to the doctor tomorrow and im going to ask for some testing. what should i ask for? i'm willing to pay up to 1000 because we got a tax refund.
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9 comments:
Hi Courtney!
I'm not sure if you have posted it somewhere else already... but could you possibly post the tests you have had recently... it might help us to offer some suggestions :)
blessings,
Lauren
bartonella positive
lyme negative
thyroid good
cat scans good
basic blood work good
hormones good
heres what i'm considering. tell me your thoughts. this is a big list i know but i need to weed some of them out.
Possible Tests:
Viral markers
Heavy metals
Rheumatoid diseases
Autoimmune diseases
all bartonellas
Brucella serology
Mycoplasmas
SPECT scan
MRI for head
MRI for neck
Urinalysis
CSF test
Red blood cell count
Globulin levels
Albumin levels ESR
rapid plasma reagin (RPR),
purified protein derivative (PPD),
Strongyloides stercoralis serology,
stool examination for ova and parasites.
CD4+ lymphocyte counts
Coxiella,
Leptospirosis serology
Septicemia serology
melioidosis serology
Ehrlichiosis
Epstein Barr virus
Human T-lymphotropic virus
hmm...Re-do the Lyme Western Blot at the lab your insurance covers, now that you have had some agressive treatment, you should be making antibodies---If you have Lyme disease. I would also get a PCR from your insurance lab as well.
Also, have you had a CD-57 done? If you score above 60--thats good for a Chronic Lyme patient. This test also is beginning to help doctors w/ the diagnosis of Lyme disease. The lower the number, the sicker the patient.
I would do the Igenex testing, since you now have $1, 000 to spend--I actually looked up the Igenex testing manual I have, and picked what I think would be most worthwhile for $1, 000.
I would ask your doctor to order from Igenex (you can even order the testing kits online yourself---but a doctor needs to draw the blood, sign it and send it):
-Complete Panel 6050- Price: $450.00
Includes:
*IFA Lyme disease test
*IgM/IgG Western Blot
*PCR
-Co-infection Panel- Price: $630.00
Tests for:
*Babesiosis
*Ehrlichia
*Bartonella
It comes to a little over $1, 000---but looking in this manual--if you ordered each test indiviually, you'd be spending more that way.
Best of luck!!
Ohhh---I thought you meant only as far as a Lyme work up.
You havent gotten these tests run BEFORE a lyme clinical diagnosis was made?? ....
Did you see an Infectious disease doctor, Neurologist, Rheumatologist, or an Immunologist yet?--they are the doctors who can run the testing you listed above---if you saw doctors of these professions---and they ran labs on you--its likely they ran most of those tests you mentioned. If you havent seen those doctors---you really should---part of Lyme is building a case, seeing other doctors, not just an LLMD- this will help with your SSI, and also for more insight into your situation, and things that can be done to help you.
I would say run by you doctor what you want done, and have him refer you to the other doctors, and for the SPECT.
Going to an infectious disease doctor, your not going there to debate lyme--go to get tests run for all other possible Infectious diseases that meet your symptoms, CMV, EBV, etc...
The Neurologist can get the MRI's done in a flash, and do a neurological exam---
The Immunologist can do all of the HLA testing, the Heavy metal testing, do testing on your cells to see if you are producing enough of certain types...basic immunological work up is vital w/ Lyme because of the large impact lyme has on the immune system
The Rheumatologst can do the Rheum. tests--rule out Lupus, test your ANA, C-reactive protein...all that good auto-immune stuff as well.
------THEN you will have all your testing, and 4 new doctors "on your case"
See the lyme testing I reccomended in the above post as well-
Lepto. would be much less common than most of the other co-infections (outside of Hawaii). If funds are limited, I'd probably skip this (unless you had high liver and/or kidney values)
I'm glad you found out your Bartonella status. Dr. Breistchwerdh (I'm sure I'm butchering his name) is a veterinary tick bourne disease specialist. He is of the opinion that Bartonella in and of itself can cause chronic, severe, multi-symptom disease in both animals and people (with no other infection). Addressing this will be vital to your recovery. I have seen very sick animals with Bartonella so I can attests to this on the veterinary side.
--Fara
Don't forget the testing Jessica that you listed from my "Give Me Information" post. Courtney, check out that post -- it's down the page or perhaps on page two right now. Read it through.
Definitely check your CD-57 levels
Also from your list the tests that jump out to me to add:
Viral Panel (including active & latent Epstein-Barr)
Heavy Metals**
Also add a test for Candida levels (systemic yeast).
& mycoplasma
Also I think having a comprehensive stool test is quite important. However, labs that are usually covered by insurance are not very reliable so it is important to go with a specialty lab. The best are Doctors Data and Geneva Diagnostics and both much be sent off in a kit. The parasitology test was not too expensive around 60$, but the full comprehensive which is very informative is very expensive around 350$. If you are not having too many G-I symptoms at the moment, you might want to make this a second priority.
[QUOTE]Metallic Blue wrote:
Don't forget the testing Jessica that you listed from my "Give Me Information" post. Courtney, check out that post -- it's down the page or perhaps on page two right now. Read it through.[/QUOTE]
thats where i got most of it
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