I'm dealing with this now for 2 yrs and it seems that nobody can find out, or is willing to, what is wrong with me. I had multible blood tests done, Lyme, TSH, CRP, ANA, RH, PSA, CEA, MPC, ESR all turned out ok. The only thing what wasn't ok was that my ANCA Atypical was positiv twice and my blood work showed Poikilocytosis(Toxic Neutrophils-Vascuoles). Had a EGD and a Colonoscopy done where they detected a Hiatal Hernia and the other testing came back good ( no Celiac disease etc)
Also had a Qsart test done which came back abnormal with too less sweat values on forearm and proximal foot. Neurology dr, said that there is a possible small fiber neuropathy but decided they didn't need to see me anymore. The Muscle biobsy showed minimal and nonspecific findings.No evidence of denervation, dystrophy or myopathy. it showed also thickened vascular and sarcolemmal basement membranes, which is associated with diabetes, which I don't have.
Most of my symptoms are muscle tenderness and weakness ( sore sharp pain to the touch ).
Back, neck and shoulders hurt the most all the time. Really have a hard time moving my head
from side to side. Calve muscles cramp up alot and can barely touch them. Throbbing pain in
various locations ( sometimes side of jaw, close to the ears ).
Feel crawling sensations everyday. Mostly on my neck, ribs, abdomen, back and lower leg areas.
Burning pain in my arms and legs, when doing nothing. Muscle twitches in all different locations.
If I stretch out my back, lying down, all my back muscles cramp up, causing extreme pain.
Sometimes I move my neck, left and right, it cramps up tight in extreme pain. Almost black out.
Some to severe ( especially in hot weather ) light headedness and weak. In hot, humid weather,
have to concentrate to keep balance and not pass out outside. Extreme fatigue most of the day
and lack of concentration. Hard to drive a car, for example, fall to sleep minutes into driving
anywhere. Vision gets blurry in the evenings. Can't drive at night at all, from night vision
blindness. Also got stomach pain all the time with irritable bowels. It takes turns, some days
constipated, than gas and bloating,then days with diarhea. Lost considerable weight. Since high
school and even 10 years in the military, I always weighed avg 170 lbs. ( about 25 yrs.) . I'm 44
years old. In 2 months, June to August, I lost 25 lbs. Now I weigh only 138 lbs. Try to keep my
weight up. But, lost my appetite and feel bloated, sick or full when eating.
Had the weird phenomenon of Raynauds, in the hands several times, when it was colder out.
Fingertips to the first joint, would turn white with no circulation in them and no feeling at all.
Sometimes it would last for hours. When circulation returns, they would extremely hurt
like pins and needles until normal again. Frequent urination, slurred speech, drooling and lack of
coordination of thought to speech. Short term memory loss. Rash on both sides of neck,
extending down to my back and both sides of my face. Popping noise in my back, when I move
side to side.
Muscle tics everyday in various locations.
Things that are straight appear to be slanted (like the floor or wall).
Chills every day
Sorry this is so long, but I have alot of symptoms as you can see. I would really appreciate any input to find out whats going on with me.
Regarding your muscles and twitches, been there and still there but not as bad as it was. My sweat test came out patchy and I have small fiber and autonomic neuropathy with full body parathesea (pins and needles). I had lost 50lbs in a few short months. Pile some more stuff on to my list. For three years I was in and out of large hospitals for all kinds of testing. I went from doctor to doctor AND more doctors! I was given a diagnose by some of "It's psychological". I never accepted that and decided to take control of my own life. I had gone to a neurologist who gave me a spinal tab for lymes which came out negative. Then I went to a LLMD (Lymes Literate doctor) as they call themselves but that's who people see after doctors just don't know what to do with you. I was tested for Lymes and it came out positive. I had Lymes twice before 24 and again 22 yrs. ago. It seems that the lymes stayed dormant and in remission for all those years just to activate again. I have Chronic Lymes which lowers the immune system and leaves the person with all sorts of autoimmune problems.
* I believe 40-60% of all people who have Lymes has tests that are negative!!!!!
You don't need a bulls eye rash either to have Lymes.
I would highly suggest you seek out a LLMD and see what they have to say. They do tests on you that you never heard of. There are a couple different tests for lymes. The Essay which they do first is protocol but it's not as sensitive as the Lyme Western Blot. Also, you really have to tell the doctor that you want your test going to EGENIX LABS in California. They have a different way of testing and their results can come out positive when other labs won't.
I take Gabapentin (Neurontin) just for neurological symptoms. It's like a bandade but it works. I just want to feel better. I feel much better while on it and gained my weight back. My LLMD is also helping me with the other problems I have, like keeping my immune system up, etc.
I hope this hellps and I hope you find out what's wrong and get well.
Sorry I didn't thank you sooner, but it's always busy around here. Always happy and sad to hear about, someone with alot of the same symptoms as me. I did have 3 Lymes
test done and one Western Blot test done and all were negative. These were over a period of 1 1/2 years, by three different doctors (family doctor, Rheuma. and neuro doc). So I
crossed Lymes out a while back, but I'll mention to my Doc. about a LLMD and see what he says.
I have to warn you that most conventional doctors do not recognize LLMD's. I don't think there is a degree for it. I beleive they are Internists that specialize and do research for Lymes. You can ask for a Lymes Specialist. If your doctors do not agree that you need a Lyme specialist, take control of yourself and Just go and see one on your own. That's what I did.
On my first visit to the LLMD, I was evaluated in a way that I had Never been evaluated by any other doctor I saw. The doctor inspected inside my mouth like no dentist ever did. The doctor told me that I probably have Candida in my blood. He drew blood and sent it out. Sure enough it came out High. Now I'm on an anti-fungal medicine and he put me on a special diet. I would have walked around for I don't know how long not knowing this. This is just an example. I can't say all LLMD's do this.
*Important-Make sure you take a blood test: CD57
It shows how your immune system is doing. If it's low, then you may have Lymes. Mine was normal while my test for Lymes was positive. This past month it dropped down 100 pts and now it's low.
These special doctors understand what Lymes is when all other doctors "think" they do. Lymes specialists try to put the disease in remission if it's active. They also have a full understanding of what Lymes can do to the body and work towards building up the patients immune system to fight the disease. I do not know if my neurological problems are permanent. We are hoping that once my Lymes is in remission then I won't have these neurological problems.
Lori,glad to hear that you're feeling better. Thank you for sharing your story with all of us. Have consider ever or thougtht about going to a holistic doctor? I've been doing a lot of research on line and my very own mother,said that the only way to heal your body is by feeding it with lots of greens,fruits,herbs and detoxify our bodies. She eats wheat grass and drinks it almost daily. I also found this docotor,drhyman.com and research functionalmedicine.org. I also suggest that you go on veria.com and read some of the peoples stories,they are real people just like you and I. I really wish you and the rest of the amazing people on this site who are brave and willing to share their stories, All the BEST of HEALTH!.
If all you had as a test for Lyme was the western blot, it isn't at all unusual to get a negative result, when you really do have Lyme. That's because the western blot only tests for antibodies, and borrellia effects your immune system so that you don't make antibodies. The fact that you've been in the military, along with some of your symptoms suggests another infection that I have some experience with. That is filiariasis. Often overlooked here in the US, because it's supposed to be tropical, yet here I sit with swollen hands and there's something moving in them! Before the hands it was the calves. The hands would be a mimic of Raynauds, but nobody is going to tell me that it's my muscles twitching and spasming. I'm in here, and I know the difference. Same with the calves, I got thrown in the looney bin diagnosed with delusional parasitosis because of the twitching in them. You'd think the VA would be on top of this, lots of vets bring it back from overseas locations. I even saw an Army education film done in the 1960s about filariasis on you tube. Saddest thing is a Korean war veteran friend I have with elephantiasis of his legs and scrotum, but he's probably never been diagnosed with what he really has. Google brugei malayi, or wuchereria bancrofti. You can have them, and be without symptoms, or it can be anywhere between no symptoms and fullblown elephantiasis.
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