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Hi Chris

I am glad that you respond.

As you allready saw my english is not perfect, but I'll try to be as correct as possible (thank you for understanding).

I am quite excited that I have opportunity to talk to someone that I think has very very similar if not identical disease than I. To date I was unable to find any person on any forum that I feel has the disease I am fighting with. Your case is the first that I truly belive is the same as mine. On any forum I were (a lot of them) I initially thought ''yes I finally find the answer'' but when some time pass off I was again and again without answers (adrenal fatigue, SIBO, heavy metals, subclinical hypothiroidism, Vitamin D deficiency, Hughes Syndrome, Lyme disease, MS, Vitamin B12 deficiency, leaky gut syndrome, candida.........)

I'll try to be as simplistic as possible.

Ok here is my story (it is not possible to be short)

In may 2003 I realised that I became constipated. It was not usual constipation but constipation in a way that i was unable to empty my bowel fully. Always some unusual sensations of not being able to empty my rectum. Then some discomfort in lower left abdomen started, not pain but hard to describe sensations of weakness and discomfort. I also developed low back pain. Doctors made colonoscopy, abdominal ultrasound, x rays everythink normal. I realised that it is hard for me to exactlly describe the symptoms. Is it bowel problems is it skeletal muscle problems - there were just constant discomfort. Finally I was dx with IBS. then after some time I realised that my stomach (epigastric area) is bloated all the time no matter if I eat or no. There were constant bloating sensation wich were very uncomfortable. gastroenterologist diagnose after gastroscopy some very litle stomach inflammation, but it was not from any infection or anythink known. Also my all muscles around back were very stiff and slightly painful. I made physiotherapy nothing worked. I made everythink possible to made my constipation better but nothing worked. Then I realised after aprox 5 months in to that that I have constant pain in my TMJ, also all my joints especially knees were unusually cracking but sensations were not painful. I knew somethink is wrong with my body but doctors repeatedly told me that it is just stress and that I need psychiatrist. I thougt ok, if this really could be the couse why I would not try psychiatrist and see. Honestly I was not deppresed never in my life. I was playing soccer for 10 years i just never had any unusual thoughts and stresses in my life. So consequently psychiatrists were never able to help me altough they tought that it is just a matter of time that they are able to find right medication for my case.
But when the time progressed I was developing new unusual symptoms. lower leg pain, some unusual skin sensations like crawling tingling numbness all over my body but the worse were on my legs. Rheumatologist after 1 year of symptoms diagnosed fibromyalgia. I realised some time that i have very large amount of urine but sometimes not. I also realised that any wound i get it cant be healed in normal time. I also developed some very frustrating symptom to me at that time - decreased sweating during sport activities. Everythink I put in my stomach felt discomfortable and almost everythink made the bloating worse. I was sent to neurology at that time. I was absollutely completely investigated but to my surprise nothing wrong was found. I thougt that this is not posible. How can I have so many symptoms and nothing have been found. How can I have constant prickling, crawling, numbness sensations and EMG's MRi's CT's can not detect anythink. I thought I was going crazy. They tought autonomic neuropathy might be to blame due to decreased sweating but every possible test were negative.

I forgot to mention increasing fatigue that I was developing. I tried everythink and nothing worked. Then I realised that my skin were slowly changing. I developed high level of anxiety due to knowing that my body is changing and the tests are normal.

Something about my skin becouse it was really so bizzare. Skin started to feel very dry all over my body and it felt innitialy like it is somehow thicker all over my body but then like it is thinner and thinner. It felt like it is not so elastic and prickly and numb. I knew that skin started to physicaly change but doctors were unable to see anythink wrong. I sudied every skin disease and was unable to find the description for my skin. Some were closely but not identical (scleromyxedema, ACA, fibrosing dermopathy, scleroderma.....)

So according to my doctors I had IBS, dyspepsia, fibromyalgia, CFS.
But I know for sure that everything started with constipatin and discomfort in lower left abdominal and low back pain

I am sure I forgot many think becouse I cant remember everythink.

If you feel your disease is similar you can ask me anythink you want. It is hard time for me to describe you all becouse it is just not possible. There is so much to describe that I dont know where to start.

I need to tell you that if you feel your disease is similar, I have almost all the answers. to my symptoms.
It took me 5 years of extensive investigation and study in area of neurogastroenterology. I will show you what test you need, to show your doctors that it is not all in your head.

One important question I have here. This is very important - when you say to someone on forum that he just broke your case wide open about ACA, you do not mention on wich body part or where your skin is changing in a way like ACA. Is this all over your body, do skin changes all over your body similary?

That is for the begining. I think it is enough. O just one think of course, if you feel that you have the same disease there is no name for this yet, but you will be able to show your doctors with their tests that you are ill and you need treatment. In that time I am not sure for treatment options but do think I am quite near to better days. I need to be honest, my disease is slightly getting worse but there is absoluttely no anxiety becouse everythink is explainable and I have more hope of getting better then ever.

With my best wishes

Luka





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