posted
SO My doc called me and had some test results
My blood work is ALL over the place. I dont know if lyme can cause this?
Rheumatoid factor is REALLY high at -114 (has been like this for about a year)
Hs CRP- 19.1 (oUCH)
White blood cell count is high (they have been elevated for about a year) ???? I would think if it was lyme they would be low?
And something about my Immune Complexes and C3 being high...Not sure what that means?? And I dont have all the numbers yet.
He also said that something on my IgeneX western Blot was + but he didnt have that with him and I have to call back tomorrow....AGHHHHH talk about me going crazy right now!
He said that my body is definitley fighting SOMETHING. My Co-infection testing for Bart and Babs from Quest came back NEGATIVE.
Just LYME can not be causing all of these symptoms. PLus he didnt say for sure if he thinks I have lyme> He said it is possible??? I dont know if I can take another day of not knowing what is wrong with me.
I have been going through this for over a year, and I cant take it anymore. I really thought I was on to something with it being lyme disease, but I think I only tested + for one band and not even a Lyme specific one.
GOD what can be making me this sick??? I am getting more scared by the DAY and Losing more hope by the hour. I dont know what to do. As with every other doc , he is worried about my high RF and wants that to come down....I would LOVE for it to come down. I dont even know WHY it is so elevated????
Well, He said to call tomorrow and get the results when the office is open. I will post the final results in this thread.
Thanks everyone! I will try not to go to crazy tonight
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
One band (even though not specific) could still mean lyme disease. Do you know what band it was??? I only had one band come back positive and it was not lyme-specific.
I know what you're going through, though, believe me.
I've had a very, very low white blood cell count for years (at least since I was in high school, and I'm 24 now). Still not sure what is causing that and I am seeing a hematologist about it in a couple weeks. I'm terrified. Not sure what it means or if it's lyme or not.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
PS - did you start your Doxy? Any reactions or herxes to it?
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
Are you treating for Lyme? Remember, you don't need a WB to confirm your Lyme - the sickest people are the most likely to not test positive.
It's a clinical diagnosis - get on 300 or 400 of Doxy for a while and see how you do. If you get better then you're on to something.
For 5 years I've had a high platelet count - an indication of infection. 5 years? I only got obviously sick from Lyme 1 year ago, but a little "glitches" for many years which makes me wonder how long I've had Lyme.
My CRP was 5.5 - so above normal but I'm trying not to worry about it - hopefully with continued treatment it will be a measurement that will go down to show improvement.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
| IP: Logged |
I will have the exact results on the WB hopefully tomorrow. I ahve started doxy,and I havent really noticed much of anything. Actually it would be really hard for me to notice because my symptoms are already so intense.
When I did the MP I couldnt always tell my Herx from my normal symptoms because my normal symtpoms are already so terrible and intense and CONSTANT.
I have to up my doxy. I only started on 100mg because of my heart symptoms. I will go up to 200mg and than 300mg.
I dont even know if it is worth it anymore. There has been something terribly wrong with my body for a long time.....and there are really NO answers.
Maybe I should jsut settle for all of those "AUTOimmune" diagonsis,maybe they were right all along and I am just a walking list of autoimmune disease....actually not walking I'm in bed 24/7.
Well good luck, I hope everything is ok with your blood tests.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
| IP: Logged |
posted
Yes I did see an LLMD and NO he didnt test me for Elichiosis.......I will ask him tomorrow if he can test me for that because my son tested positive for Anaplasma, which is Elrichiosis.
I dont have RA, which is why it is so weird that I have an elevated RF....I have had all the other RA tests like the Anti CCP and that was negative. I have joint pain in my knees but no swelling or anything. Also I have more MUSCLE pain than anything.
My most scary and debilitating symptoms are my neurological symptoms.....Vertigo, constant dizziness, off balance, head pain and pressure, and just trouble walking I always feel weird.
I dont know what is wrong with me at all.....
I have been going to doctors for over a year now....I need a definitve answer, I need treatment because I feel like I am wasting away.
I am starting to think that NO one can help me.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
| IP: Logged |
You might have already posted this, but is your doc a Lyme Literate Doctor? That makes all the difference in the world in getting accurate assessment. I'm sure you've heard this many times over while doing your research, but the LLMD's seem to be the only ones who can realistically rule in or rule out Lyme Disease and Co-Infections.
Just for basis of comparison (in case it helps), my Igenex WB only showed Band 41 as positive. I also had 4 or 5 Indeterminate bands.
Ask your doc if you had any WB Indeterminate bands and which bands they are. Indeterminate bands are significant.
My CD57 test (by LabCorp) resulted in a whopping level of 1. Low levels on this test indicate chronic Lyme infection. This test is also used to measure healing during Lyme treatment:
>200 is considered normal <20 indicates severe illness 0-60 is seen in chronic lyme disease >60 lyme activity indicates improvement
Also, on the co-infection testing you've had done, I'm not sure that Quest is the best lab to use for co-infection testing.
The LLMD's that I've seen insist on using Fry labs for Bartonella and the FISH Igenex test for Babs.
I tested negative on the Babs testing, but have been diagnosed by more than one LLMD with Babs based on symptoms and physical examination. On physical examination the docs have seen a Babesia rash on the back of my neck that I didn't know I had. They told me that this particular rash on the back of the neck is one of the hallmarks for Babs infection. As I said, I didn't know I had it -- no itching, no raised skin, or anything -- the rash appears underneath the skin.
On the Bartonella testing with Fry labs, I was positive showing very heavy infection.
My CRP levels have been quite high. My vitamin D levels alarmingly low.
Anyway, my point in sharing all this is . . . based on all of the above, plus my long list of misdiagnoses (including Lupus, CFIDS, Fibro, etc.), my current symptoms, and my "herxing" reactions to a trial run of Doxy, I was diagnosed with Lyme/Bartonella/Babesia.
The LLMD said it was pretty much a no-brainer diagnosis actually. lol
Given everything you've been through, I would really try to exhaust the Lyme and Co-Infection assessments -- even if you need to see more than one Lyme doctor. I know in my case it took me 11 years to finally get a diagnosis. Other doctors lead me down any path but Lyme prior to my being properly diagnosed with Lyme and Co-Infectons.
I'm sorry that your doctor phoned you with incomplete information. How frustrating. It's like he dangled a carrot in front of you.
I hope you get answers soon!
Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Remember too, that co-infection testing isn't accurate.
If you have positive Lyme specific bands from Quest then it is Lyme.
Probably co-infections too.
Post your results here tomorrow.
Also Quest doesn't test for all the bands.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
I think he was just calling to see how I was doing, which was REALLY nice...and he thought that someone had already called me with the results...But they hadnt yet, so he read me off the results he had and to my luck that DID not include the WB......NOOOOOOO. So now I have to call tomorrow.
I actually dont know the result of my CD57, but it was my Immune complexes like C4 and C3 and those that were all out of wack. Actually he said a lot of my blood work was out of wack.
I have a REALLY high Rheumatoid factor and all my immune functions (complement) are elevated and my CRP is throhg the roof. He said it definitley looks like my body is fighting SOMETHING.....BUT WHAT????
I have been way too ill for this whole time. I am sick of being bedridden and unable to function.
SOMEONE needs to figure this out or I may do something really bad. I cant deal anymore.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hey there,
i'm so sorry for everything you're going through. i wish more than anything your WB was 100 percent positive for lyme, but as many here have already noted, some of the sickest lyme patients test negative because their immune systems aren't producing any infection-fighting antibodies.
lyme is a clinical diagnosis. as frustrating as it is, a negative test absolutely DOES NOT rule out lyme or coinfections.
i am no doctor, but it really sounds to me like you have lyme and co. i say this because most often when someone is undiagnosed for a long time with multisystemic, debilitating, bizarre symptoms, it turns out to be lyme.
hang in there. as you increase the doxy you will most likely have one hell of a herx reaction -- but then again, not everyone herxes. this illness is so individual; unfortunately there are no hard and fast rules when it comes to chronic lyme.
quote:Originally posted by UnexpectedIlls: Yes I did see an LLMD and NO he didnt test me for Elichiosis.......I will ask him tomorrow if he can test me for that because my son tested positive for Anaplasma, which is Elrichiosis.
Oh my gosh!! That's extremely important!
I agree with heiwa that when someone has had every test in the book and is still ill, it's usually Lyme.
I've been here long enough to know that one for sure!
I'm glad they don't think it's RA. Also.. The CRP is high.. but we've had two posters this week who said their CRP's were in the 50's!!
So you're not dying yet!! Hang in there long enough to get a real diagnosis and treatment, OK!!?
WE love you and want you around for a long time to come... but feeling BETTER!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Shandy, I still think you do have lyme. Getting the CD57 results should help. The people I know who are the SICKEST with lyme, like you, did not test positive. As others said, your body just might not be able to produce any antibodies right now.
I can almost bet you will herx as the Doxy goes up. YOu are on too small a dose right now to get a herx, IMO>
My husband and I both have lyme. I have been sicker symptom wise than him. I only test positive for band 23; he has tested positive for ALL 10 for ten years now.
OOPS I think I am logged in as him right now; this is Tracy actually.
Hang in there honey, I bet it's lyme!
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[dizzy]](graemlins/dizzy.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic