help please,expert advice desperately needed

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labrat72
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/6/2010 1:23 PM (GMT -6)   
I am a thrirty-seven year old mom of three who is at the end of her ropes. I know I am sick but now I'm as confused as ever. My lab tests came back like this...
I am ANA positive with homogenous pattern.
I am Lyme positive (by ELISA)
I am EBV positive- convalescent stage
I have an elevated SED RATE.
I don't know if I should be refered to a rheumatologist of an infectious disease doctor?
 
I have been really sick for a while. Diagnosed as FIBROMYALGIA by my primary care doctor and put on Pristique to help increase my seritonin. My symptoms include (but are not limited to) extreme fatigue, weight loss (>25 lbs less than my normal weight), numbness in toes, carpal-tunnel like syndrome in hands, raynaulds syndrome, intolerance to extreme heat and cold, anxiety, constant headache, fever of unknown origin (3months now at range of 99.6 to 102), hand tremors, did I mention extreme fatigue_worth mentioning again because all I want to do is sleep, intolerance to loud sounds, strong smells- do I sound like a hypocondriac(sp?). I'm really not. Please help. Am I going insaine? Am I really sick? What do you all think. Who should I go to to get help?
 
Is it LYME or LUPUS or what?
 
Any advice is much appreciated. I don't trust my G.P. doctor.
Cass

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 2/6/2010 5:05 PM (GMT -6)   
Cass,
Sorry you have not been feeling well!! Many of your symptoms are common with Lyme. If you had an positive ELISA Lyme test (not many of us do) I would say you need to see someone who specializes in Lyme disease. Here are a couple of site to search for a LLMD "Lyme literate medical doctor"
ilads.org
turnthecorner.org

There is much to learn about Lyme disease, read, and ask lots of questions.

Best wishes

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/6/2010 8:30 PM (GMT -6)   
labrat,

I am basically in the same position as you right now. My LLMD thinks I have Lyme and my primary thinks it's auto immune. I did have an abnormal ANA test years ago but I do have Hashimotos which is an auto immune disease. Anyway, I am in the process of checking everything again.

In my opinion, and from what I've read, Lyme can mimic Lupus, MS and fibro symptoms. I'm sure there are others. I do think though, that if you do have auto immune symptoms, that they need to be treated as well. If I were you, I would make an appointment with an LLMD first and go from there. You will probably need to see a rheumatologist too though especially if the pain and fatigue are serious.


**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 2/8/2010 1:27:32 AM (GMT-7)


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/7/2010 11:28 AM (GMT -6)   
No you are not losing your mind...sounds very familiar honey!
And it does not help to have three little ones with a sick momma. I totally hear you.
Where do you live?
When did you first get sick?
You can tap on the envelope on the left and we can talk one on one. I have alot of questions to ask you.
And can answer many of yours.
Our family all got lyme in 2004. It has been a long battle. But all is well now with my children. Feb 8 TH of 2009 is when I left Envita. And I am celebrating a year of perfect health.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 2/7/2010 1:51 PM (GMT -6)   
Lyme can cause an elevated ANA w/ a pattern. Did they check the splits - the antibodies specific to the different autoimmune diseases (such as RF, anti-Ro, anti-La, SSA, SSB, etc.)? I had an elevated ANA w/ duel pattern speckled & homogenous, but none of the splits were positive so they wouldn't diagnose me w/ Lupus - they told me instead that I had Undifferentiated Connective Tissue Disorder, or a "Secondary Lupus-Like Syndrome" - but when I asked what the heck it was secondary to, they told me to see a shrink!! But then I was diagnosed w/ Lyme by a very savvy Naturopathic physician and learned that Lyme can elevate the ANA, the ESR (Sed Rate), and throw all kinds of other tests out of whack too. Best idea is to go to a Lyme-Literate Physician (LLMD) or Naturopath (LLND) and get tested for Lyme and associated co-infections.

Good luck,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


labrat72
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/7/2010 4:02 PM (GMT -6)   
THANK YOU ALL!!!

I'm not super computer literate and this is my first forum site. I have posted here and the LYME section and the responses are so kind and helpful. I was feeling very lost. I have to go now but I will post more about myself soon. THANK YOU again.
I look forward to learning more about you all and especially excited to be connected to such a supportive group of people.
Cass

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 2/7/2010 4:23 PM (GMT -6)   
Hi Cass,

I am sorry you are not feeling well. You said, "I am sick..." and I agree with you! You are not going insane or making this up. You even have tests to prove that you are sick---lucky you! You deserve good medical care. Find yourself a good lyme literate medical doctor and a great lyme literate natuorpath and start healing. Never give up and you will get better!! Read the topic at the top of the first page of this lyme forum entitled "New to lyme, start here". It is possible to have more than one condition at a time, so treatment can be varied and long. Just hang in there and keep focused on the prize---good health!

Best wishes for a speedy recovery, bablymers mom

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 2/7/2010 10:33 PM (GMT -6)   
Razzle. Hey what is ANA?
hep c , lyme
Dad has lyme


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/8/2010 2:32 AM (GMT -6)   
ANA means Anti Nuclear Antibody

Here is an explanation of it:

An ANA test detects proteins called antinuclear antibodies in your blood. Your immune system normally makes antibodies to help you fight infection. The antibodies detected in an ANA test are different. They may attack your body's own tissues.

A positive ANA test indicates that your immune system has launched a misdirected attack on your own healthy tissue — in other words, an autoimmune reaction. Because connective tissue is often the target of autoimmune reactions, the resulting diseases are known as connective tissue diseases. Examples include lupus, rheumatoid arthritis and scleroderma.

The result of an ANA test doesn't prove that you do or do not have a connective tissue disease. Along with other tests, an ANA test helps narrow the range of possible diagnoses if other factors suggest that your illness is the result of an autoimmune reaction.

www.mayoclinic.com/health/ana-test/MY00787
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

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