Confused on sarcoidosis just what is the truth

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I am having a difficult time. I tested for lyme and was positive for ehrlichiosis which is passed by a tick bite. This I had in 2011. I have had 6 and a half years with this as well as typhus. I did private bloodtests from a UK lab. I am in pain to arms, side of ribs, wrists and hands. Prior to my private bloods I had an ACE sarcoidosis which was high. Thing is ehrlichiosis is an exact duplicate of sarcoidosis especially with lung involvement but one is treated by steroid and one with antibiotic. Doxycycline really helps and I am clear for a couple of months. Infectious diseases seem to be jumping on sarcoid rather than a lyme co infection. I am beginning to lose faith in anything I hear. I have a fight on my hands to get the right treatment for the right diagnosis. Ehrlichiosis can affect bone marrow and is infectious has anyone had a problem with bone marrow with sarcoidosis? I feel as though these two diseases are the same.

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    I have sarcoidios in my bone marrow spinal fluid every part of my body is infected with sarcoidios only thing left is the brain stem I'm a stage 4 and all they can go is help ease the pain nothing more can be done so save my life. I wish you the best in your fighting just know your not alone

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    • Posted

      Anytime ... I've been fighting this illness since I was 17 every treatment they tried and I mean every treatment didn't work I now have to inject myself with chemo once a week . In hopes it will give me some quality of life. Due to my fate is already sealed. If you ever have a question about sarcoidios or the treatment's I will do my best to give you the correct answers.

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    • Posted

      Hi Gina. How many years has it been for you? 6 and a half years has been hard for me with a lot of horrible experiences, I can only imagine what you have gone through. . Did you try antibiotics? I have a chest xray on Thursday and am dreading it..have a feeling this thing has altered the marrow of the bones in both arms..long story on that one. It is the weirdest disease. I hope you have some support. Xx
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    • Posted

      I've been fighting this for 30 years now and I'm at the end of my fight I chose to do self suicide once it hits my brain stem due to that's the only thing left. My eyes no longer able to cry I can't produce tears anymore all dried up. Every inch of my body is infested with it. I will pray for you that you will be one of the lucky ones they can save with the right treatment.

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    • Posted

      You must know more about the disease than any doctor by now. Because I take citalopram I take most things with a pinch of salt. I can't possibly become incapacitated I have 5 greyhounds. What do you think can be causing my legs to slowly deteriorate. My doc doesn't know. Should I rest more. Should I put my feet up more. I used to smoke. I like smoking. I just as well start again. 

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    • Posted

      Soaking in Epson salt hotter the water the better your legs muscles will relax I soak anywhere from 3 to 4 times a day and sometimes I get lucky and my muscles are relaxed enough that the pain is manageable
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    • Posted

      Hi gina1970

      We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

      If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

      Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

      If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

      Kindest regards

      Patient

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    • Posted

      Wow didn't know I wrote I wanted to harm myself. Bit IF I did then I did. But the way I feel doesn't mean I'm going to act on it. I'm far from being a child I understand what I say and do. Just at times when the pain is greater then you can handle to tend to wish for it to stop no matter how it's done. Didn't know I wasn't able to speak of how this illness has distroyed my whole life and my family. And yes there are times I fo become depressed and want it all to end but never have I acted on it. I'll continue to fight this fight til the every end

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    • Posted

      Brave lady. I have to say I empathise. It does hurt the family. It hurts everyone .so far it's hit economic resources emotional resources and other people's patience. 

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    • Posted

      I would like to know more about your muscle weakness. My legs feel so heavy. I often feel like they are going to give out but they don't. I also get numbness and tingling in my feet. Sometimes the muscle weakness will go into abdomen. I also lose control of hands of using them for long periods. Weakness in arms too but my legs are terrible. Why is this? Is it part of the nervous system if so how did you find out sarcoidosis was there. Or does the meds you take cause muscle weakness. Thanks. 

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    • Posted

      It's a mixture of both

      Poor blood flow my hands turns white as a ghost and fell like they have been in freezing water for hour's as well as my legs and feet becareful of the numbness in your legs I went to stand up and broke a few bones in my left foot

      The best way to find out where all the sarcoidios is in your body is if they do a pet scan which takes a few hours but to me it was well worth it

      At times I can barely move my legs so I use a Wheelchair. I also realize that soaking in Epson salt and water ( as hot as you can handle) helps me out. I hope this helps you in some way and your able to relax your leg muscles

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