I supposedly have fibromyalgia. Dx'ed in late 2014 when my mom was very sick. She died dec 2014. It has been said that my symptoms arose from her dying and my poor sleep and that if those are fixed, this would end. I've had the typical lyme test (neg) and an ISPOT test (which I was told was as good as Ingenex) and that was neg, but my IFN-Y secretion unstimulated was high, and it indicated either a food sensitivity or a co infection, as it said that meant my immune system is active.
I've had DNA testing and metabolic testing. Am having neurotransmitter testing tomorrow. I am heterogyzous for MTHFR as well.
My symptoms in the beginning were (and still are at times) what felt/feels like bone pain..achy and growing-pain feelings, mostly in joints but now always.
Now I halso have a little tingling in one hand, and my left foot (which has a bone spur, and is confirmed that a nerve is somewhat crowded and inflamed there), as well as shocky sensations, nerve pain (sometimes sharp and sudden--painful). The latter symptoms (the shocks, not the nerve pain) I first noticed on Gabapentin, so I went off and they eventually went away. Went back on same happened, came off. Tried Lyrica too. Both at low doses.
Now I am weaning off Gaba another time to see if it helps, so far, no.
I've also had a 'tickle' sensation in my nerves...hands, head, feet...it's maddening...I felt suicidal.
Anyway, has anyone heard/had the Ispot test? Do you have these symptoms? If so, was it lyme? And if NOT, what was it?
Feel very free to PM me as well. I have some docs in mind, thanks to a friend outside of this and from here. I am in IL, sw suburbs of chicago.
Posted by sixgoofykids (Member # 11141) on :
Can you tell us more about your Lyme testing? Did you have the Western Blot, and if so, what were the results?
Are you taking something for your MTHFR? Your symptoms sound nervous system-related and B vitamins are closely associated with that. Plus, when you don't methylate, you don't get rid of toxins. Perhaps toxins and heavy metals are part of the issue. I would see an alternative doctor who understands MTHFR.
I had an "Array 10" for food sensitivities. It was great. I found out all kinds of foods I was reacting to. That helped. When my gut is healed, we think I'll be able to add most of them back in, but it was good to know what was causing some random reactions.
So, I'd look at 1) MTHFR treatment 2) What are the food sensitivities? 3) Heavy metals .... with an alternative practitioner. Once you get all this stuff (and the other stuff they find) treated, if you have symptoms, then worry about whether the remaining is bacterial or viral, if you even have remaining symptoms.
Posted by Robin123 (Member # 9197) on :
If you have Lyme, stress can bring it on more strongly, since stress weakens the immune system.
I was first diagnosed with fibromyalgia before finding out I had Lyme, as are so many.
Bone pain and nerve symptoms sound suspicious for Lyme.
IGeneX can send you a free testkit. If you qualify as low-income, www.lymetap.com covers 75% of testing costs.
Posted by Lymetoo (Member # 743) on :
Check your GABA supplement. Does it contain Vit B6? It could be adversely affecting your nerves.
Posted by Judie (Member # 38323) on :
Have you ever taken a fluoroquinolone antibiotic (cipro, levaquin, avelox, etc...)?
They can cause the persistent problems you described long after taking it.