What do we have???

[firemanswife21]

I have a very curious question...What different diseases/syndroms, illnesses did everyone cross off or rule out before getting diagnosed with Lyme. I'm trying to look out side the box and cover all of my basics.
My list so far is
Rhuematoid arthritis
Lupus
Magnesium deficiency
MS
Hypothyroidism
Adrenal insuffenciencies

I think thats it so far....Anyone have different ones??

[JackieCalifornia]

You ask about a Chicago LLMD:  I googled "chicago lyme" and got a bunch of stuff, and the first hit at w w w dot chicagolyme ******* has a ton of links and someone to call if you scroll down all the way.  The sooner you get diagnosed and treated, the better.  Good luck!  Let us know how you do.

[firemanswife21]

WOW you sound exactly like me! I was totally fine and then one night at 9:20pm I went to get up and I felt like I had over worked every muscle in my body for hours apon hours! And the fatigue came after a week or so. First the soreness and pain then brain fog then fatigue. I'm in the same boat at trying to find a LLMD also.
I am wanting to rule out some more diseases and disorders before i spend all that money on a LLMD  and the Lyme test through IGeneX.
Good luck!!

[Cheri21157]

I am in the same boat as all of you. Same symptoms same tests and no dx. I did have a w blot done by Igenex am awaiting the results. I feel as if I am losing my mind - getting depressed and don't feel like eating or doing anything. My symptons started 3 mos ago. Woke up one morning feeling feeling like I had been run over by a truck. My fatigue is not as bad when it all first started but the the pain, tingling brain fog and everything else is horrible. Does anyone know of a llmd in the Chicago area?

[patsy10]

My situation is similar to wonko's. I had tons of tests done and saw several physicians.  I saw 5 or 6 neuro's, including an MS specialist as I was sure I had MS.  Everything came back normal.  I respond to antibiotics and I had the bullseye rash, despite negative lyme tests.

[wonko]

I think I did a decent job leaving no stone uncovered!  Testing I had included

*Blood tests to rule out vitamin deficiencies, thyroid, STDs, autoimmune diseases
*2D heart echo and EKG
*Brain and c-spine MRI w/wo contrast
*Lumbar puncture to rule out MS

I had a repeat brain MRI 6 months after the first one.  I had several rounds of the blood tests.  

I had a full eye exam by an opthamologist including visual field tests.

I saw four neurologists and one rheumatologist in 2008.  One of the neuros and the rheumie were both prof's at a large East coast teaching/research university hospital.  The rheumie ordered 11 vials worth of blood work!

I also saw my PCP about a dozen times that year, I often returned in between specialists as my symptoms progressed.  I also consulted a psychiatrist and an occupational therapist at my place of work (since my work was being adversely affected).  

I had two Lyme ELISA screens, one in Jan and one in July 2008, both negative.  My CSF from the LP also tested negative for Lyme.  All four neuros, the rheumie, and my PCP insisted that I had ABLD--"ANYTHING BUT LYME DISEASE."

I was primarily concerned about a neurological problem such as MS, because I do not recall a tick bite ever, was in the right age/sex demographic for onset, at first showed a relapse-remit pattern, had mostly neuro symptoms, and an abnormal brain MRI (non-enhancing, non-specific, white matter lesions).

After taking a course of oral steroids, I briefly (<1 week) felt 100% better.  This was quickly followed by all of my symptoms returning suddenly, as well as new symptoms including extensive bilateral stiffness/joint pain, fatigue, and nausea.

Around that time, some key people in my life who knew some of what I was going through spoke up about their experiences with this insidious disease.  I thought it had been ruled out, but I began to have new doubts.  I refused to just "wait and see," I was deteriorating too quickly for that approach.  Especially after the failed steroid treatment.

I returned to my PCP and requested both a Western blot and a trial of antibiotics.  She refused, so I sought out an LLMD.  

My Igenex W. blot was IgG 39+, 41+++, IgM 41+.  A smear from Fry labs showed bartonella.  

I've been in treatment on multiple antibiotics since December.  I was sick with obvious symptoms for 1.5 years before by diagnosis, and I suspect I had a quiet infection for longer, maybe many years.  I'm not better, but I've made gains.

So I'm not really sure WHAT I have, but it seems to respond to Lyme treatment, so I call it that.  My LLMD treats me, while my other doctors were not able to help as I lost more and more ability and comfort.

I do think it is extremely important to rule out other conditions.  A common pattern with Lyme patients is that we tend to look pretty good, both in person and on medical tests.  Lyme patients tend to have a lot of negative and/or non-specific tests, but a lot of (often debilitating) symptoms.

I've told my story on this forum before, but it still makes my head spin.  I don't think I'll ever be certain about what exactly I have, how I got it, or when.  I'm just glad I am responding to treatment!  (Though I wouldn't mind if things would speed up...)

[margypops]

Tell you what though I do feel better this week as I am taking some great supplements and I am thinking they are helping me , my legs dont ache as much as last week ,my feet let me go downstairs .....I have upped the dose of B Complex and the tingling/numb hand has improved...

[margypops]

Sorry to be flippant but I think I have them all......

[PlateletGal]

Since the symptoms of lyme and CFS are pretty much the same... I thought I would share a list of conditions that I posted in our fibro/CFS health pages for members who are newly diagnosed with fibro or CFS. These are other conditions that they may want to discuss with their physician and rule out first.


ankylosing spondylitis
lyme disease
lupus
rheumatoid arthritis
chagas disease  
thyroid problems, including Hashimoto's thyroiditis (which can go along with CFS & fibro)
multiple sclerosis
mixed connective tissue disease
osteoarthritis
gout
systemic vasculitis
HIV
bacterial endocartis
polymyalgia rheumatica
hepatitis (hep C has apparently been a suspected cause in some fibro cases)
Sjogren's Syndrome
heart conditions
major depression/anxiety disorders
myofascial pain syndrome (often can go along with fibromyalgia or CFS)
chiari malformation
vitamin B12 deficiency
celiac disease  
sleep disorders (often goes along with FMS/CFS)
benign fasciculation syndrome
valley fever link: http://www.mayoclinic.com/health/valley-fever/DS00695/DSECTION=symptoms
myofascial pain syndrome (often goes along with a fibro or CFS diagnosis)
addison's disease
perimenopause symptoms
Conditions that are often seen in patients who have Fibromyalgia or Chronic Fatigue Immune Dysfunction Syndrome:



restless legs syndrome link: http://en.wikipedia.org/wiki/Restless_Leg_Syndrome
periodic limb movement disorder link:  http://en.wikipedia.org/wiki/PLMD
endometriosis link: http://en.wikipedia.org/wiki/Endometreosis
depression or anxiety
hypermobility syndrome link: http://en.wikipedia.org/wiki/Hypermobile_syndrome
chemical sensitivities or multiple chemical sensitivity
myofascial pain syndrome link: http://www.webmd.com/pain-management/guide/myofascial-pain-syndrome
sleep apnea link: http://www.nhlbi.nih.gov/health/dci/Diseases/SleepApnea/SleepApnea_WhatIs.html
fibroid tumors link: http://www.fibroids.com/uterine-fibroid-tumors.aspx
POTS (postural orthostatic tachycardia syndrome) link: http://www.dinet.org/
thyroid problems (usually hypothyroidism)
secondary adrenal insufficiency
irritable bowel disorder link: http://digestive.niddk.nih.gov/ddiseases/pubs/ibs_ez/
neuropathy link: http://en.wikipedia.org/wiki/Neuropathy