Hip
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Some of those symptoms (night sweats, joint pain, fasciculations, paresthesias, hair loss) remind me of the Chinese "HIV-like" virus.
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Three years and no diagnosis. Frustrated
- Thread starter andre79
- Start date
Some of those symptoms (night sweats, joint pain, fasciculations, paresthesias, hair loss) remind me of the Chinese "HIV-like" virus.
@andre79 sending you encouragement. I hope you can find some answers.
When I am feeling overwhelmed by this illness, I try to tackle one symptom at a time and see if I can make a dent in it. I have learned more from PR than from any doctor.
Life as a chronically ill person can be very tough and I too have had periods when I was so ill that I felt that I might be dying.
Best wishes.
When I am feeling overwhelmed by this illness, I try to tackle one symptom at a time and see if I can make a dent in it. I have learned more from PR than from any doctor.
Life as a chronically ill person can be very tough and I too have had periods when I was so ill that I felt that I might be dying.
Best wishes.
Gingergrrl
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@andre79 Thank you for sharing all of that with us and I too am really sorry to hear what you are going through. I have had many occasions with this illness in which I felt I may be dying including last night when I (again) had a severe and unexpected reaction to a medication. I do not think that you said anything wrong and were just sharing your fears and disappointment.
I have a question, though... several months ago you posted that you were diagnosed with "Primary Billiary Cirrhosis" and I was curious if that turned out to be an incorrect diagnosis or if that is something you are still coping with now? I may have missed some of your posts in the middle if you explained.
Best wishes
I have a question, though... several months ago you posted that you were diagnosed with "Primary Billiary Cirrhosis" and I was curious if that turned out to be an incorrect diagnosis or if that is something you are still coping with now? I may have missed some of your posts in the middle if you explained.
Best wishes
@andre79 , just wanted to add that - as you know - I'm suffering from very similar symptoms. Doctors proposed immune suppressors such as methotrexate. I'm not on any drugs at the moment. Several Doctors I saw agreed that the etiology of my disease is infectious - as I believe yours is. I got told that drugs like methotrexate / interferon have a consistent anti-viral activity, thus proving to be beneficial in such cases. I'm really scared to undergo such a treatment, that's why I'm just taking vitamins and supplements at the moment.
However, I got my infection only 1 year ago. You might try to ask Doctors to evaluate the possibility of trying similar treatments, if you feel that could help. Apparently, even 'Humira' could help in such a case.
I believe you need to take care of all of those neurological symptoms, as they might got worse and worse. Possibly, a rheumatologist could help you. It might take several trials and errors, but you NEED to feel better one day soon.
I'm not a Doctor, but I'm just trying to tell you the exact same things I got told Regardless of the treatment you'll decide to undertake, I truly wish you to get better - from the bottom of my heart.
You're too young to give up.
Best.
However, I got my infection only 1 year ago. You might try to ask Doctors to evaluate the possibility of trying similar treatments, if you feel that could help. Apparently, even 'Humira' could help in such a case.
I believe you need to take care of all of those neurological symptoms, as they might got worse and worse. Possibly, a rheumatologist could help you. It might take several trials and errors, but you NEED to feel better one day soon.
I'm not a Doctor, but I'm just trying to tell you the exact same things I got told
Regardless of the treatment you'll decide to undertake, I truly wish you to get better - from the bottom of my heart.You're too young to give up.
Best.
amaru7
Senior Member
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- 252
Believe me a diagnosis is worthless without the right treatment, I've been there and tried endless treatments without success, only little improvement in terms of symptoms after visiting many doctors all over the county and trying different approaches. Many experience what you do.
I know I do and I feel hopeless at times because this illness is robbing me of my life and precious years.
All I can say is if you insist in getting your diagnosis do so, you need a specialist in cfs, which are rare and expensive. I personally wasted allot of money on diagnosis and treatments.hopefully you don't have to go through the same experience and find a way to get better.
I know I do and I feel hopeless at times because this illness is robbing me of my life and precious years.
All I can say is if you insist in getting your diagnosis do so, you need a specialist in cfs, which are rare and expensive. I personally wasted allot of money on diagnosis and treatments.hopefully you don't have to go through the same experience and find a way to get better.
@andre79, sorry to hear things are so rough right now. I have often felt like I was dying with this illness so I fully sympathise with your situation.
I was wondering if you've considered travelling to see a physician who specialises in ME/CFS. Something to consider is that perhaps your condition is being worsened by going from doctor to doctor who don't know anything about this illness and tend to be quite incredulous or even abusive when we share our symptoms with them. If you've seen 40 physicians, it is unlikely you have an undiagnosed medical condition for which there is a validated test and a clear treatment path. That being the case, by going to see doctor number 41 you may simply be accumulating more negative life experiences and wasting money.
Personally, I started to feel somewhat better once I abandoned all hope that medicine can help me. I have seen a number of "top" internal medicine doctors in a few countries, not to mention all the specialists, and the end result was just more stress/emotional upset, exhaustion and harmful treatments.
I was wondering if you've considered travelling to see a physician who specialises in ME/CFS. Something to consider is that perhaps your condition is being worsened by going from doctor to doctor who don't know anything about this illness and tend to be quite incredulous or even abusive when we share our symptoms with them. If you've seen 40 physicians, it is unlikely you have an undiagnosed medical condition for which there is a validated test and a clear treatment path. That being the case, by going to see doctor number 41 you may simply be accumulating more negative life experiences and wasting money.
Personally, I started to feel somewhat better once I abandoned all hope that medicine can help me. I have seen a number of "top" internal medicine doctors in a few countries, not to mention all the specialists, and the end result was just more stress/emotional upset, exhaustion and harmful treatments.
andre79
Senior Member
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- 122
Again I want to thank all of you guys for your kind messages. You have no idea how much they mean to me at this moment. I am having a bad time and I am not good at coping when it comes to my health. I am not a negative person, actually i am more an optimistic one but when I find myself in this place having to fight against the doctors instead of receiving proper help from them, I question their ethics and their knowledge. Not all of them of course, but in my experience, most of them.
@Misfit Toy thank you for your words, i really appreciate the support. I almost never post anything because I try to overcome the situations by myself. I only come here if i feel that I definitely can't go on and you guys always give me the push I need.
@SOC actually I was using that approach with doctors, i went to the cardiologist and only told her about my pots symptoms, i went to the nefrologist and only told him my urinary symptoms. I have been in 40 doctors, and I have been through a lot of tests and labs, and since i never get a conclusive result they don't give me any treatment. Most of them have dismissed my symptoms.
@Kati i totally understand you and agree with you that we need to be more united and organized as patients. Mind you, if that happens with patients in one of the best health care system like the Canadian, what can we expect from the others. I don't know what will take for the doctors and governments to take real actions to actually help us.
@Hip I was aware of that chinesse virus but I was under the impression that it ended up being an urban leyend. The last research they post is from March 2013 and nothing else showed up. Now, being realistic, I am already having trouble convincing doctors that I have a real, documented illness. If I go with the story that I have a very rare chinesse virus they would probably lock me up in a mental house and throw away the key. I have never even been in Asia! In case that I have that, i probably have to treat it myself, and I have not idea how.
@AndyPandy thank you for your support, it means a lot to me.
@Jammy88 thank you dear, I know that you are very interested in my case and actually going to a Rheumatologist might be my next step. I want to try something, anything to help me improve. Until now doctors have refused to give me any treatment except pushing on me antidepressants. As I have said, i was two years with cymbalta and did nothing for me. I will let you know any news and don't get discouraged, ok?
@Gingergrrl Yes, I was told that I had PBC and I had the liver biopsy to confirm. The procedure was awful, it was one month and a half ago, and I am still recovering because the doctor "fixed" and umbilical hernia that I didn't know that I had, and gave me three months of medical rest. Anyway, after I had such a traumatic procedure i received the news that "something happened" with my liver sample and that it had "artefacts" in it so, the results are not conclusive. Can you believe it? And they have the nerve to ask me why I am so dissapointed! That was a very harsh punch I received. Anyway, from the sample all they could tell is that i have slightly fatty liver (i already knew) and "apparently" the biliary conducts are unaffected. So the hepatologist is going to treat me for the fatty liver but he can't tell me if I have PBC or not. If I indeed have it, the doctor says is not even in stage I. My whole family is totally infuriated with this, but i just felt sad. If I were a revengeful type of person I would sue them for a huge amount of money, but i am not.
@amaru7 and @Sidereal i agree with you that I should go directly to a cfs specialist but I have a particular situation, i don't have access to buy dollars. They are not freely sold my country. So I can spend a lot of money here in my local currency, but it is very difficult to me to pay a foreign doctor and even if i could manage to save enough to travel and pay their fees I am pretty sure that I won't be able to afford the treatments. So I am stuck with local doctors and treatments
@WillowJ what can protein in the urine mean? I have just tested once and I am repeting the tests to see. At the moment I did this test I was taking selenium, i wonder if i was chelating myself from toxic metals without realizing...
Again you guys are the best! I am praying for all of us to find a solution for our health. You guys are really wonderful people.
@Misfit Toy thank you for your words, i really appreciate the support. I almost never post anything because I try to overcome the situations by myself. I only come here if i feel that I definitely can't go on and you guys always give me the push I need.
@SOC actually I was using that approach with doctors, i went to the cardiologist and only told her about my pots symptoms, i went to the nefrologist and only told him my urinary symptoms. I have been in 40 doctors, and I have been through a lot of tests and labs, and since i never get a conclusive result they don't give me any treatment. Most of them have dismissed my symptoms.
@Kati i totally understand you and agree with you that we need to be more united and organized as patients. Mind you, if that happens with patients in one of the best health care system like the Canadian, what can we expect from the others. I don't know what will take for the doctors and governments to take real actions to actually help us.
@Hip I was aware of that chinesse virus but I was under the impression that it ended up being an urban leyend. The last research they post is from March 2013 and nothing else showed up. Now, being realistic, I am already having trouble convincing doctors that I have a real, documented illness. If I go with the story that I have a very rare chinesse virus they would probably lock me up in a mental house and throw away the key. I have never even been in Asia! In case that I have that, i probably have to treat it myself, and I have not idea how.
@AndyPandy thank you for your support, it means a lot to me.
@Jammy88 thank you dear, I know that you are very interested in my case and actually going to a Rheumatologist might be my next step. I want to try something, anything to help me improve. Until now doctors have refused to give me any treatment except pushing on me antidepressants. As I have said, i was two years with cymbalta and did nothing for me. I will let you know any news and don't get discouraged, ok?
@Gingergrrl Yes, I was told that I had PBC and I had the liver biopsy to confirm. The procedure was awful, it was one month and a half ago, and I am still recovering because the doctor "fixed" and umbilical hernia that I didn't know that I had, and gave me three months of medical rest. Anyway, after I had such a traumatic procedure i received the news that "something happened" with my liver sample and that it had "artefacts" in it so, the results are not conclusive. Can you believe it? And they have the nerve to ask me why I am so dissapointed! That was a very harsh punch I received. Anyway, from the sample all they could tell is that i have slightly fatty liver (i already knew) and "apparently" the biliary conducts are unaffected. So the hepatologist is going to treat me for the fatty liver but he can't tell me if I have PBC or not. If I indeed have it, the doctor says is not even in stage I. My whole family is totally infuriated with this, but i just felt sad. If I were a revengeful type of person I would sue them for a huge amount of money, but i am not.
@amaru7 and @Sidereal i agree with you that I should go directly to a cfs specialist but I have a particular situation, i don't have access to buy dollars. They are not freely sold my country. So I can spend a lot of money here in my local currency, but it is very difficult to me to pay a foreign doctor and even if i could manage to save enough to travel and pay their fees I am pretty sure that I won't be able to afford the treatments. So I am stuck with local doctors and treatments
@WillowJ what can protein in the urine mean? I have just tested once and I am repeting the tests to see. At the moment I did this test I was taking selenium, i wonder if i was chelating myself from toxic metals without realizing...
Again you guys are the best! I am praying for all of us to find a solution for our health. You guys are really wonderful people.
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Hip
Senior Member
- Messages
- 17,858
Yes, it's not the sort of thing you can mention to your doctor.
A few years ago, I was in email contact with a Chinese patient who said he had the Chinese virus. He was working in Brazil, and he told me that his virus seemed to spread quite easily to his Brazilian colleagues.
If you do have the Chinese virus, the good news is that many patients report a significant improvement in symptoms after around 1 or 2 years with the virus.
Misfit Toy
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@Jammy88 -interesting! I will be trying Enbrel-similar to Humira. Doc is nervous of me trying methotrexate. Understand why, too.
I have Sjogrens and high high EBV. All of it started after EBV.
I have Sjogrens and high high EBV. All of it started after EBV.
If it was just once, it could be as simple as dehydration. If you tend to be dehydrated, this could recur. Edit: of course it could also mean various medical problems. Your doc should help you with this. /edit.
What I do when I see an abnormal lab test is search for the test name. Then read about it at several sites like: an .edu site, someplace like labtestsonline, a disease org for a disease which can be related to the test, a major clinic like Cleveland Clinic. This gives me lots of options, but most of them won't fit. Sometimes none of them fit.
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andre79
Senior Member
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- 122
Guys, good news, the hepatologist ruled out PBC (wow, that was a relief, I even cried thanking the Lord) and he said that my liver is fine, just a slightly fatty liver that wouldn't cause any of my symptoms. He doesn't have an explanation for my two AMA positive, but my last AMA was negative, so he said the case is closed. Also, he did test for hiperinsulinism and he ruled out that too. So, back to starting point... He says my problem is allergies (He ordered a IGE test and it turned out high, so that explains my itchiness), so next step is going to an allergist.
After 40 doctors and countless tests, and no diagnosis (except for fibromyalgia) I am starting to think that they might be right. My symptoms are totally organic and real, but now I wonder whether my mind is to blame. I don't know what to think... I have always been such a positive girl... how come my mind switched that way? It makes no sense... My illness started with an extremely traumatic situation, maybe the stress triggered an autoinmune disease? But what could it be?
After 40 doctors and countless tests, and no diagnosis (except for fibromyalgia) I am starting to think that they might be right. My symptoms are totally organic and real, but now I wonder whether my mind is to blame. I don't know what to think... I have always been such a positive girl... how come my mind switched that way? It makes no sense... My illness started with an extremely traumatic situation, maybe the stress triggered an autoinmune disease? But what could it be?
Hello @andre79 ,
Glad PBC was ruled out.
High IgE can be associated with mast cells disorder / mastocytosis , which is usually triggered by a virus and can cause hematologic disorders in adults. I am not giving you a diagnosis, just saying you might consider that as a possibility to rule out. You know our cases are pretty similar, and my doctors told me to get checked for those things (going to a hematologist, etc…).
I understand how you feel my friend. I guess if we're lucky, we'll just get better with time… I do believe supplements and vitamins can really help in our case. My GP strongly encouraged me to keep taking them - she's specialized in Rheumatology and very well prepared.
Sending you a big hug from Italy - 5 am here, insomnia is still a big issue for me
The Lord is with you and I'm sure one day you'll get able to feel much much better.
I truly admire you for your courage, you're a great source of inspiration for me..
Glad PBC was ruled out.
High IgE can be associated with mast cells disorder / mastocytosis , which is usually triggered by a virus and can cause hematologic disorders in adults. I am not giving you a diagnosis, just saying you might consider that as a possibility to rule out. You know our cases are pretty similar, and my doctors told me to get checked for those things (going to a hematologist, etc…).
I understand how you feel my friend. I guess if we're lucky, we'll just get better with time… I do believe supplements and vitamins can really help in our case. My GP strongly encouraged me to keep taking them - she's specialized in Rheumatology and very well prepared.
Sending you a big hug from Italy - 5 am here, insomnia is still a big issue for me
The Lord is with you and I'm sure one day you'll get able to feel much much better.
I truly admire you for your courage, you're a great source of inspiration for me..
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It's not unusual for stress to be associated with the onset of various kinds of diseases, but it's necessarily that it causes it.
Don't blame yourself (or your mind). You (yourself, your essence) are ok. Your body (including brain, if you have fibro or anything that could be diagnosed as that) is not. Doctors don't know how to diagnose some things, and this is normal. Some doctors can't cope with this very well, however (that's when they start to say silly things like "maybe it's in your head" or "it's only deconditioning" or "it's psychosomatic"), and it's frustrating for patients as well to not have an explanatory diagnosis (sounds like you think fibro doesn't explain everything).
Hang in there.
Hopefully the allergist can help.
Don't blame yourself (or your mind). You (yourself, your essence) are ok. Your body (including brain, if you have fibro or anything that could be diagnosed as that) is not. Doctors don't know how to diagnose some things, and this is normal. Some doctors can't cope with this very well, however (that's when they start to say silly things like "maybe it's in your head" or "it's only deconditioning" or "it's psychosomatic"), and it's frustrating for patients as well to not have an explanatory diagnosis (sounds like you think fibro doesn't explain everything).
Hang in there.
Hopefully the allergist can help.
andre79
Senior Member
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- 122
@Jammy88 mast cells disorder Jammy! Actually that was one of the options I was studying before the PBC stuff and totally forgot about it. And it has treatment, right? Do you have any idea what test should I perform to diagnose it? I could go to a hematologist instead of the allergist. You hang in there, eventually we will find out what is wrong with us. Reading you gives me hope. Thank you!
@WillowJ thank you friend, I totally get what you say, I am convinced that I am organically ill, and fibro doesn't explain all my symptoms. I have an aunt that was diagnosed with fibro many years ago and she has a pretty normal life, much more active than mine. My reaction to chemicals, my night sweats, my dilated pupils, my itchiness, none of that can be explained by fibro... And of course, doctors don't have the humility to accept that they are clueless about a case, they prefer to call me crazy and send me to the shrink... Shame on them.
@WillowJ thank you friend, I totally get what you say, I am convinced that I am organically ill, and fibro doesn't explain all my symptoms. I have an aunt that was diagnosed with fibro many years ago and she has a pretty normal life, much more active than mine. My reaction to chemicals, my night sweats, my dilated pupils, my itchiness, none of that can be explained by fibro... And of course, doctors don't have the humility to accept that they are clueless about a case, they prefer to call me crazy and send me to the shrink... Shame on them.
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@andre79 !
There a couple of tests to diagnose mastocytosis:1 - Tryptase level in blood (sometimes can give false negatives…)
2- bone marrow biopsy (more invasive, but more accurate)
Treatment for mastocytosis usually includes corticosteroids / interferon and similar drugs - which are used for almost any ME/CFS related disease, lol.
Good luck and keep us posted !
Best!
Misfit Toy
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@Jammy88 -it's being delivered to my home this week. I will probably try it next week. I'm a little bit nervous about it because it can weaken your immune system but I'm really hoping it helps with my pain.
@andre79 !
1 - Tryptase level in blood (sometimes can give false negatives…)
2- bone marrow biopsy (more invasive, but more accurate)
Treatment for mastocytosis usually includes corticosteroids / interferon and similar drugs - which are used for almost any ME/CFS related disease, lol.
Good luck and keep us posted !
Best!
I agree with @Jammy88 that systemic mastocytosis would be worth investigating. It could match some of your symptoms, and is a disorder frequently overlooked. I have diagnosed a few cases on bone marrow biopsy, but serum tryptase levels are a good starting point. Further, there have been some recent therapeutic advances with this disease. Some patients are exhibiting good response with tyrosine kinase inhibitor therapy (imatinib mesylate aka Gleevec). Seems to work best for patients with wild type cKIT gene.