Lupus or Lyme?

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Date Joined Jul 2007
Total Posts : 715
   Posted 9/9/2008 12:38 PM (GMT -6)   
I am usually on the Lyme forum but recently have been wondering about my diagnosis. I will try and make this short..
I became sick in October 2004 with high temp 103 and flu symptoms which only lasted 24 hours. A week later I had the exact same thing only I also woke up with joint pain and stiffness in my hands and fingers. Three weeks later I was hit with severe fatigue which is constant to this day. The joint pain lasted for 10 straight months and then just disappeared. I have had so many symptoms it would be a long list but the major ones I still have are chronic fatigue, dry-burning eyes-muscle twitching L calf only-constant red rash on my neck only.
When I first became sick I had very elevated liver enzymes and a high c reactive protein level with low WBC. I have had  constant Low WBC since Nov 2004. I have been on abx for almost two years and am still sick. I even travel out of state to a Lyme doctor in NY but still am suffering daily. The fatigue is constant but varies from day to day. I believe I only had the ANA done back then which was negative. Does this sound as though it could be lupus?
I don't know where to turn to from here because although I live in a Lyme endemic area I am just not getting better. Thanks..

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Date Joined Dec 2006
Total Posts : 2818
   Posted 9/9/2008 10:04 PM (GMT -6)   

Hi KTP, I'm sorry you're going through this. I really don't know anything about lyme disease but unfortunately it seems to happen alot when everyone around you has the flu the first thing people think of when you get a fever is you must have the flu too. meaning it is possible that you have somthing else but your doctor is just used to seeing lyme disease. It seems to me that you should be seeing some releif by now.

As for your symptoms lyme and lupus are alot a like as far as symptoms. A neg ana doesn't ness. mean you don't have lupus or another auotoimmune disease or overlaping diseases. I can't tell you what to do but if I were you suffering for as long as you have I would see another rheumy and tell them you aren't convienced and would like some more testing and somthing for the symptoms that you do have. I know you said you have seen more than one doctor but somtimes it takes several doctors and several tests. Unfortyunately it can take a long time somtimes years to get a dx. But hey if you aren't getting better you need to keep serching until you get some answers.

Let us know

hugs carol

Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
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Veteran Member

Date Joined Jul 2007
Total Posts : 715
   Posted 9/10/2008 6:57 AM (GMT -6)   

Thanks Carol-I am going to see my pcp in another couple of weeks and have him do some more testing. I forgot to mention that I also have hypothyroid and adrenal insufficiency. Two years on abx is a long time and I would think I should be at least having periods of time when I am symptom free.


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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/11/2008 2:54 PM (GMT -6)   
Kim, a lot of your symptoms are present in lupus. As I'm sure you have already experienced, things like lupus and lyme are so hard to diagnose because the symptoms are present in a lot of diseases. If you haven't already looked it up, you can click on the links in my signature and you'll find some good resources there.

I'm no doctor, but if you aren't getting results from being treated for lyme after all this time, it's probably a good idea to look at other causes for your symptoms too. Have you seen a rheumatologist yet? Those are the specialists who treat lupus. If you do get a referral, make sure you see a rheumy who specializes in lupus. I found out the hard way that not all rheumatologists are as up to date on lupus as they should be. Let us know if you have any other questions and I hope you'll keep us updated on what you find out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Jul 2007
Total Posts : 715
   Posted 9/12/2008 11:51 AM (GMT -6)   
I have not seen a rheumy yet because I no longer have any joint pain at all. It only lasted 10 months and then just went away and has not returned. That was 3 years ago. I am seeing my doctor in a couple weeks and think I will see an endo and then go from there. Both doctors say it is Lyme and Bartonella but after all this time I am not so sure. All I know is that I am sick with something and need to be sure what it is.  I will check out those links..Thank you
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