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So many things it could be

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Lyme Disease
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Posted 1/8/2014 11:27 PM (GMT 0)
Hello everyone. This is my first time posting on the Lyme forum. In October I was diagnosed with Fibromyalgia. I wasn’t confident in the diagnosis for several reasons so eventually I ended up at a neurologist. He did some tests and I had some MRIs done. I saw him yesterday for the follow up and he said he “thinks” I have MS but he’s not certain because apparently the one anomaly on the MRI is not typical. I don’t know. So he is going to have me see someone who specializes in MS next week.   One of my biggest question marks throughout this process is a rash I have. It comes and goes though. It’s no constant. I get it every day in various parts of my body. Most often on my chest and knees. It only ever last for about 10 minutes and then it’s gone. It was the very first symptom I had and it still happens. I had the rash for over 2 months before all the other symptoms yet all the docs I see what to gloss over it and not count it as a symptom. I can’t figure out why.   Symptoms in chronological order: disappearing/reappearing rash, fatigue, tingling, pain in all quadrants of body, all joints snap and pop now, insomnia, night sweats, dry eyes, dry mouth, unusual vision problems, occasional light muscle spasms, o ccasional numbness in foot..   The past couple of weeks I’ve had cough and sore throat but I think I just caught what is going around.   It seems that there are many things that share symptoms (Fibro, MS, LD, Sjogrens etc).   1)       How long did it take for some of you to finally get diagnose correctly and what made you believe the diagnosis was correct after many incorrect calls? 2)       Does any of this seem like it could even be Lyme?   Thanks so much!
Posted 1/9/2014 12:03 AM (GMT 0)
Sounds a heck of a lot like Lyme to me. I too get rashes that come and go quickly like yours. I also have the tingling, fatigue and night sweats.

I knew I had Lyme after a while of putting the pieces together because I was bit twice by a tick so I didn't have to go through a myriad of docs making incorrect diagnoses.

If I were you the next step would be to find a Lyme-literate doc who will test you through a specialized lab most likely being IGeneX as the standard labs are not very good when it comes to Lyme.
Posted 1/9/2014 12:15 AM (GMT 0)
Thank You!
Posted 1/9/2014 1:18 AM (GMT 0)
Hi Akkami,

Welcome to the Lyme section of Healing Well!

Sorry to hear you are not doing so well...

Could you describe your rash to us?
Do you by any chance remember being bitten by a tick, or having had a bull's eye rash?
Did you by any chance mention Lyme to your dr? Do you know if you were tested? (test are very inaccurate (a good LLMD is able to diagnose not only by a blood test result, but also by clinical findings and based on your symptoms), but if you were tested, something might have shown up?)

As for your questions:
1) It took about 17,5 years to get diagnosed in my case. The drs I had been seeing (neurologists, endocrinologists, cardiologist, oncologist, GP's, internists, rheumatologist, except for my accupuncturist) never ever took the time to listen to my symptoms - they assumed that they were caused by an earlier cancer treatment. They prefered the easy solution. I still think it's a dr's task to listen to all of a patient's symptoms. What might seem trivial or bizarre to you might be of great importance for your dr. It can close the puzzle. I wasn't buying it anymore after 4 years. When some started insinuating it was psychological, I really started to stand up.

2) My dr considers Fibromyalgia and chronic fatigue merely as a symptom, and not as a disease 'an sich'. He is convinced that there is always an underlying cause for fibro.

Have you considered seeing a LLMD?
If you would like to look for one, you could post a new thread 'Looking for LLMD in _____'. Members here will send you the requested information in a pm (you will have to enable your emailaddress so that they can reach you), cause it is not allowed to post dr's names on the forum.

MarieLS
Posted 1/9/2014 1:57 AM (GMT 0)
Wow thanks for the great response Marie. I will enable my e-mail and make a posting as you suggested. My general feeling regarding Lyme is that it was an afterthought at best for the docs I have seen. I know it may be a long shot at this point but since the best thing I’ve got right now is a strong maybe on MS, I thought it would be a good idea to try and rule out what I can.

• I do not remember being bit by a tick but I do have a dog and he is allowed on the bed…
• I do not ever remember having a bulls eye rash.
• I did mention Lyme to one of the many docs I have seen. I believe it was tested for and the results were negative. Unfortunately I do not know what test was done. As I understand it there are several that are unreliable.
• I would describe the rash as.. hmm.. It can vary in size from as small as a dime or as large as my entire upper chest. It tends to be more pink than red. It can appear anywhere on my body though it is most common on my chest and knees. It doesn’t usually hurt or itch but from time to time it might.
• The first doc I saw was a dermatologist since at the time I only had the rash. The derm told he it was something internal, not skin related.
Posted 1/9/2014 3:23 AM (GMT 0)
Hello Akkami,

After seeing so many doctors and all tests were negative, I finally realized I had Lyme. Yes, tests are no reliable at all. My LLMD ordered an IGENEX test which came back negative I only had 2 IND bands, my LLMD still treated me base on all my symptoms.

Next month is going to be exactly one year when my symptoms started first, rash, numbness in my left foot, then left leg, left arm, I had tingling sensation in my head, my left eye was infected, anxiety, speech problems, memory problems, night sweats, vision problems, insomnia, joint pain in that order.

I was on and off antibiotics until I started treatment in August last year with a LLMD who believed I had Lyme and didn't hesitate to help me, I am still in treatment and now most of my symptoms are gone.
Posted 1/9/2014 4:33 AM (GMT 0)
I never saw a bullseye either, or any rashes, but I've experienced almost all of your other symptoms, and for me they are caused by Lyme and Co's. I've bounced from specialist to specialist to no avail, and finally put the pieces together myself.

I sought out an experienced Lyme Dr, received a clinical diagnosis, and later had it confirmed by an Igenex test that I was CDC positive. I too have failed the conventional tests from my regular MD.

Your symptoms do sound like Lyme, and with the night sweats I would think about Babesia as well. The new to lyme thread(very top post)has symptom lists for Lyme and the co-infections, and also info on what tests are best, among other helpful tips if you want to check that out.

I'm not an MS specialist, but I do know that Lyme can cause lesions on the brain as well.
Posted 1/9/2014 7:28 AM (GMT 0)
hi akkami I was told I had fibromyalgia, I had an anxiety disorder, and everything else. this summer, I was having pain in my lower left buttock near my spine and I had an MRI that showed I have a lesion in my pelvic area. I did have a bull's eye rash, all kinds of other symptoms too. I ended up seeing an llmd and had the igenex test for lyme and it was positive.

you definitely need to see an llmd and have the lab test. I suffered for years before I was properly diagnosed. I got correctly diagnosed finally because I am a health care professional and after coming off of a 18 yr addiction to benzos which I was put on unnecessarily, I woke up knew I was very sick, and did the research to find out what was wrong with me. be your own advocate. educate yourself. jackie
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