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blindeyepug
@blindeyepug

Posts: 164
Joined: Apr 30, 2016

Have a few autoimmune disorders - now have consistent low grade fever

Posted by @blindeyepug, Apr 28, 2017

Hi, I usually try not to complain, but I am very frustrated. I have RA, Sjogren’s and Fibro along with spinal stenosis, osteoporosis, depression. I try really hard to stay active, stay away from pain medications and stay positive. Well, I am really down. I have had a low grade fever (99.8 to 101.2) for over two months together with, if possible, even more exhaustion than usual. I am really struggling. I have been to my rheumatologist who took bunches of blood tests. All came back within normal except I have low B12 and slightly elevated C3C. I recently had chest, abdomen and pelvic scans taken that came back clear. Now I am suppose to go to an infectious disease specialist. I am very frustrated and really tired of feeling sick and tired all the time. My boss (I still work part time), husband and family do not understand the exhaustion. I am getting “those” looks again like I did when I first started having fibro symptoms. I just wonder if any one else has had this happen and, if so, what was discovered? I just am super depressed. I feel as if I have taken ten steps backwards.

REPLY

@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don’t take anything to stop it. I hope you get some answers. We are all here to support you.

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@blindeyepug , Laura? Hi, i hope you dont mind my butting in. I missed you. Are you ok?
Judy

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

Thanks so much oldkarl! I have not had a 24 hour urine collection. Don’t think I have been tested for SERUM Free light Chain. I go to my doctor on Tuesday (May 23) and will ask about such tests. I will also look up info you mentioned and the videos. I greatly appreciate your help. I am dragging myself out of the depression and beginning to be more proactive – as I have done for my other autoimmune diseases. I will keep you informed, but will probably be after I see my doc. Thanks again!

Just a bit more for you. I have many dis-eases, and am learning they are all springing from or piggybacking on my amyloidosis. Cancers: prostate, bladder, urethral, kidney, liver, pancreas, stomach, lung, brain, thyroid, melanoma. Cardiac arrythmia, (tachy, low voltage) rheumatoid and psoriatric arthritis, eyelid purpura, Barrett’s esophagus, edema, cornea grid, perhaps even the diabetes 2, Sjogrens, Sicca, PN, sleep apnea, gastric blockage. Sounds similar, to me. The trouble is that my doctors seem to be trying to protect the misfolded protein from me instead of attacking it with a strong suspicion of guilt. It is uncurable, but not untreatable, except by doctors who refuse to do the testing and treating.

@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don’t take anything to stop it. I hope you get some answers. We are all here to support you.

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Lupus is a mutation of mis-folded protein, otherwise known as amyloidosis. My sister has it.

@lisabeans

Have you been to a rheumotologist? If so, I would get a second opinion. Some autoimmune diseases give you low grade temps (lupus). I would just keep researching and see if you can get another opinion. You know your body better than everyone else. I see you are avoiding pain medicine, but are you taking anything? RA will just get worse and attack your joints if you don’t take anything to stop it. I hope you get some answers. We are all here to support you.

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See a hematologist/oncologist who is willing to work with the labs I mentioned elsewhere, or go to one of them on your own. Most Amyloidosis is fatal, but if you get it treated soon enough, it can prolong your life and quality some.

@oldkarl

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

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Thanks very much. Yes, I heard about Amyloidosis through Teri Cochrane, CN,CCP (Beyond Nutrition) as this is her expertise. She’s a nutrition and wellness expert, has her own site, facebook, newly released book “Wildetarian”. I’ve had so many tests run, you can’t believe it. But I’ll check to see if the Serum Free Light Chain has been run. What would that tell me? Yes, they’ve done the urine collection recently – I’ve had so many labs run, including insulin, the cortisol saliva tests, amino acids plasma, Testosterone free and total, antinuclear antibodies screen, Rheumatoid Arthritis, comprehensive metabolic panel, etc. What they came up with is adrenal fatigue. I don’t think this completely covers it because I have high inflammation, in which my palms (inside), feet and face all turn red with certain foods. Also, my thyroid is not functioning properly which we just adjusted with Synthroid. The TSH was way too low. But now it’s high and above 5 and I heard that a TSH level above 5.0 starts the onset of premature aging. So all kinds of stuff – I’m not comfortable with this because I’ve been healthy all of my life, so I’m checking out the Mayo Clinic. I’ll definitely look into these videos. Thank you.

@oldkarl

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

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Hi, Amy. The kidneys should remove ALL mis-folded protein chunks, usually broken apart, from all blood areas, plasma and serum, and excrete it through the urine. The Serum Free Light Chain test (sFLC) Will show even the tiniest bit of protein that escapes into the blood serum, dies in a couple hours, and is deposited in some tissue–organ, bone, nerve. By itself the test is much more sensitive than the 24-hour urine with protein check. Everyone of age 20 or beyond may show some very little bits of protein because there is usually some leakage. However, the reference range, always under 2.0 ml/deciliter, is considered safe for the moment. Above 2.0, it becomes much more serious. Frankly, leading to death. There are two forms, kappa and lambda. The ratio shown in the sFLC test is important, until one or the other leaves the reference scale behind. Mine is much higher now. However, several forms can be treated with such as melphalan, dexamethasone, and prednisone, The diagnosis called for by Medicare is positive biopsy, but don’t wait that long. That is not really a diagnosis to start a cure, but a prognosis and timeline of death. So get really pushy with your doctors, and do not wait. I have one sister who has died of Gelsolin or Cystatin C, another now dying of Crohns, Another with Lupus, and another with Cystatin C. And two nieces with Cystatin C, and another who has died of Light Chain Amy… I hope to live another year or so.

@oldkarl

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

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Oh my goodness! I’ll definitely pursue this – I have an appointment in Milwaukee with a top doctor with integrative medicine on June 5th. I’ve also submitted a request to the Mayo Clinic for a cost estimate for tests being run in Rochester. Only thing is: I’m out of Network in Minnesota. But being in Milwaukee has not provided any real clues with massive amounts of tests run, so one thing remains clear in my mind: either these medical doctors do not want to make a diagnosis or they really don’t know what they are looking for. I’m testing positive for Adrenal burnout and thyroid disease. But I’m so sorry for your family situation and for you. You seem very much on top of it and just remember, diet is everything. Bone broth, coconut oil, apple cider vinegar, etc. When I converted to 100% full organic diet, it made all of the difference in the world. I saved myself, cooked and baked everything from scratch and it literally saved my life. I did all meats and vegetables organic, and with fruits, tried to do all organic too. Then I read on what foods actually rebuild the immune system and which ones are slackers and rob you of your health. Omega 3’s are vital. We don’t get enough in our diets, which are heavily concentrated in Omega 6’s. So then the problems begin. I built up in categories for strengthening from food and supplements and it really helped. Sugars are terrible so I’ve gone 100% to organic stevia. Gluten is terrible too, as is soy, and dairy has casein which can ruin your digestive tract. They say raw organic butter is very good for you. I use “Melt” which is a coconut butter that I like because of high cholesterol. I had a friend who had a very severe case of lupus. When she went fully organic, her life turned around. You’ll notice the difference. When I went back to a few meals that were from the regular super markets, the food didn’t even taste as good or satisfy as well with the vitamins and minerals. I totally swear by organic. You pay a little more but it will detox as you getting more in nutrition. Plus organic lasts so much longer than conventional produce — like 3-4 weeks in the refrigerator without going bad. So it’s worth the cost. Plus the flavors are like when I first grew up as a child and picked the berries off of our neighbors bush. The real flavor of food comes back on organic, so it will take less food to make you feel better and will be so good for your system. So all in all, the cost works out to be favorable in the end, with less food being thrown out, etc. I feel so badly for your illnesses and hope you will continue to heal and improve. Yes, I definitely push my doctors. Thank you, Amy

@oldkarl

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

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You should know that your local doctor will probably send the tests to Rochester, and it probably will be covered by your insurance. You also should make sure your doc is working with Mayo or one of their trained persons to make sure the proper work is done. Mayo is happy to work that way.

@oldkarl

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

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Thanks so much, Karl – I’ll review that with the Mayo Clinic. I know my doctor will be happy to work with them – he’s a real blessing, also, just like you. God bless!
Amy

@oldkarl

Yes, to make it short. But a couple lab tests might give you a clue.First, though, understand that I have been diagnosed with all you have mentioned. Have you been tested for SERUM Free light Chain(c)? And done a 24-hour urine collection and had them studied for mis-folded protein? Amyloidosis? There are over a thousand mutations of this, and if a doctor tells you that you do not have any of it, without testing through Mayo, Stanford, Mass General, or other specialty labs, run, don’t walk, to the door. If they show ANY reading outside the reference range, get thee to one of these hospitals/clinics I mentioned for further high-tech testing. And contact Amyloidosis.Org for lots of info. And watch and listen to Mayo videos in their Grand Round series with Morie Gertz, Martha Grogan, Angela Disperienzi and others talking about diagnosis, treatment, etc. There is a lot of info available, so educate yourself. Any of the top labs will help you. And tel us how you do.

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Larsona10, I also wanted to remind you that Mayo has a series of clinics and hospitals which covers part of Wisconsin. La Crosse is one of the towns. I suspect it would be helpful to check out the arrangements for these tests at those facilities. We have family in La Crosse, so we have visited there.

I had a sister who had a low grade fever for at least 3 years and it was only when she developed a brain tumor and was going through a series of tests that a Doctor discovered she had pheunomia in the tip of her lung that was there for at least 3 years that all other Doctors had missed.

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@irishlady

I had a sister who had a low grade fever for at least 3 years and it was only when she developed a brain tumor and was going through a series of tests that a Doctor discovered she had pheunomia in the tip of her lung that was there for at least 3 years that all other Doctors had missed.

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@irishlady wow, low-grade fever for 3 years. How is your sister now?

@blindeyepug How did you appointment go last week? How are you doing?

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