What can cause ANA titre of 1:2560?

Posted by carpe_bean @carpe_bean, Sep 18, 2017

Hi everyone,
I got really sick back in January and have been struggling to get a diagnosis or treatment. I’ve read quite a few chat threads on this site for some time but have never posted. I have a question no doctor has been able to answer. Maybe someone in this community might have some insight! In May a doctor tested my anti-nuclear antibodies (ANAs). The titre was 1:2560. I know ANAs can be elevated by autoimmune diseases, cancer, and viral/bacterial infections, among other things. So far, doctors haven’t been able to figure out what’s wrong, despite a host of weird symptoms and irregular tests. My question is: How likely is such a high ANA to be associated with an autoimmune disease? I’ve repeatedly read that the titres caused by viruses and bacterial infections are usually “mild”, presumably <640. Is that true? Doctors have ruled out cancer, they don’t believe it’s a bacterial infection, but a virus is always a possibility. Can chronic viruses like Epstein-Barr cause such a high ANA? Has anyone else here personally experienced that? I’ve seen a handful of doctors, but most have been dismissive and unhelpful. I’m really frustrated. Hopefully someone here can provide some clarification. Thanks!

@zebraclaire97

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire

Jump to this post

It is totally possible to have RA and Sjögrens even through blood work does no show it. You can be zero positive. So many things you described reming me of Sjögrens. Sjögrens has inflamed joints, sores in mouth, eye issues including dryness, infections, and serious issues. Sjögrens causes issues with muscles and tendons along with bursitis. If they said no to Sjögrens did they do a lip biopsy? They should have. I know of an amazing Sjögrens group with informative folks and constant post. If you want it just let me know. Do not let them off the hook. I think they are trying but some flags were raised. Such as them not knowing you can be zero positive and not doing a lip biopsy. Hang in there and keep advocating for yourself.

REPLY

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire

REPLY

Hi @zebraclaire97,

As @johnbishop suggested, I moved your message and combined it with this existing discussion as we thought it would be beneficial for you to be introduced to the many members who are discussing much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members.

REPLY
@sugarboo

Hi yeast or fungus in the body emit toxins and one is called oxalates. They are tiny chemical like razor blades that embed in our tissues and cause pain and inflammation. Go out and get some Kal brand calcium citrate.,crush it and take it, see if in 12-24 hours, your pain subsides. It did for me. I now take it everyday. It binds with the chemical oxalates and they leave your body when you pee them out in your urine. I bet you that it will help tremendously with your pain level. These oxalates are what cause MS and fibromyalgia as well as other pain.

Jump to this post

@sugarboo Thank you for this information I'm going to the PubMed site and read about yeast and get some Kal calcium to see if it will help or get rid of the pain from fibro and other things.

REPLY
@zebraclaire97

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire

Jump to this post

@zebraclaire97 I wanted to share a book by an author who recovered from autoimmune disease. I have not read this book, but I have one of her other books about overcoming life's adversity and how your biography of experience relates to disease later in life. She's an excellent medical writer and has been recognized in her field. Here's the book. https://donnajacksonnakazawa.com/autoimmune-epidemic/

REPLY

@carpe_bean Welcome to this community All the moderators are so helpful Im a poster ? as you say. I had years ago Epstin Barr a 1600 count with the rash all over my body I was diagnosed with Mononucleosis After Dr. put my on medication mostly high Vitamins it took me about 3 weeks to feel like myself . I dont know if this helps you or is your problem but wanted you to know .

REPLY
@zebraclaire97

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire

Jump to this post

@zebraclaire97 I'm so sorry you are having all these problems at your young age I,ll keep you in my thought and hope you find some relieve from this .

REPLY
@sugarboo

Hi Claire so sorry to hear of all your ailments. I too have suffered for 35 years with word stuff. I now know it is from Leaky Gut syndrome”. Go research it, and you will find a wealth of information. Pub Med is a great site. I went to an interventional dr and got tested through the Great plains Labarotory. Tests results proved I have overgrowth of Candida Albicans In my intestinal tract and they cause all kinds of health problems like you are describing. Anti fungal medications can help greatly. I took them for three straight weeks and after I felt amazing! Most of my health problems went away! But they came back after two years. The Candida albicans thrive in the body if your PH levels are off. It’s difficult to figure out how to fix the PH levels. Go look into the Candida diet and go from there. I hope this helps you.

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sugarboo Thank you for your help! I have been working on my diet and controlling Candida for a while and it has been very helpful!I will definitely try the calcium citrate, thank you.

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@johnbishop

Hello @zebraclaire97, I would like to add my welcome to Mayo Clinic Connect along with the other members. There is another discussion where your post may be more visible. I'm tagging our moderator @kanaazpereira to see if we should move this discussion here:

Groups > Autoimmune Diseases > What can cause ANA titre of 1:2560?
https://connect.mayoclinic.org/discussion/what-can-cause-ana-titre-of-12560/

Kanaaz also shared the following links in the above discussion that may be helpful .

Study about the predictive value of antinuclear antibodies (ANA): http://www.sciencedirect.com/science/article/pii/S2211283913000178
Mayo Clinic page about ANA results: http://www.mayoclinic.org/tests-procedures/ana-test/details/results/rsc-20344732

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Thank you @johnbishop for linking me here! And thank you for the ANA links. It is always good to keep in mind the fallibility of blood tests – If it were just my ANA I would not be concerned but I have had systemic autoimmune symptoms and the elevated ANA reliably for 2 years now so I am just concerned, understandably.

@becsbuddy Thank you so much for the suggestion and your kind words. I am trying to plan a mayo clinic trip in the summer after I (hopefully) graduate – I'm 3.5 years into my neuropsychology program and am really just trying to make it to the end. I have gone to University of Colorado Anschutz Hospital for 3 years now, and they basically said they couldn't help me anymore once I didn't have MS, and their rheumatology department refused to see me without something more "conclusive" (than an ANA, optic neuritis, and lesions? hm). I have been seeing Dr. Jill Schofield, who is an autoimmune and rare disease specialist in Denver. She is the one who has been able to help me even begin to figure out a lot of this, but obviously it's a pretty big puzzle for any one person to figure out! I will let my family know (they have been encouraging me to consider mayo) that people seem to get good answers, they are just worried about the cost partly.

REPLY
@zebraclaire97

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire

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Well bless you Clair what a lot to put up with and worse still you are in a quandary with what it is all about. I hope you can find the answer and some good medical help very soon Meanwhile try to keep smiling. Beryl 😘 ☘️💐

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@zebraclaire97

Thank you @johnbishop for linking me here! And thank you for the ANA links. It is always good to keep in mind the fallibility of blood tests – If it were just my ANA I would not be concerned but I have had systemic autoimmune symptoms and the elevated ANA reliably for 2 years now so I am just concerned, understandably.

@becsbuddy Thank you so much for the suggestion and your kind words. I am trying to plan a mayo clinic trip in the summer after I (hopefully) graduate – I'm 3.5 years into my neuropsychology program and am really just trying to make it to the end. I have gone to University of Colorado Anschutz Hospital for 3 years now, and they basically said they couldn't help me anymore once I didn't have MS, and their rheumatology department refused to see me without something more "conclusive" (than an ANA, optic neuritis, and lesions? hm). I have been seeing Dr. Jill Schofield, who is an autoimmune and rare disease specialist in Denver. She is the one who has been able to help me even begin to figure out a lot of this, but obviously it's a pretty big puzzle for any one person to figure out! I will let my family know (they have been encouraging me to consider mayo) that people seem to get good answers, they are just worried about the cost partly.

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Mayo clinic sounds an excellent move. Beryl

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@bluebird6156

It is totally possible to have RA and Sjögrens even through blood work does no show it. You can be zero positive. So many things you described reming me of Sjögrens. Sjögrens has inflamed joints, sores in mouth, eye issues including dryness, infections, and serious issues. Sjögrens causes issues with muscles and tendons along with bursitis. If they said no to Sjögrens did they do a lip biopsy? They should have. I know of an amazing Sjögrens group with informative folks and constant post. If you want it just let me know. Do not let them off the hook. I think they are trying but some flags were raised. Such as them not knowing you can be zero positive and not doing a lip biopsy. Hang in there and keep advocating for yourself.

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@bluebird6156 The only test for sjorgens I have had is two different blood panels, both negative. They tried to do that thing where they stick the paper in your eye but my eye burned too badly – I don't remember what the doctor exactly said but she said the test wouldn't be usable and took it out. I will definitely ask if there are other tests we can do for RA or Sjogrens like the lip biopsy – thank you so much! One of my worries is just that my doctors are struggling to find anything that could explain such varied involvement in my brain, liver, joints, etc.

@jenniferhunter Thank you for the book! I will check it out – I like reading!

@lioness Thank you for your kind thoughts! It has been very hard but I am determined to figure it out – I just get a head start 🙂

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@zebraclaire97

@bluebird6156 The only test for sjorgens I have had is two different blood panels, both negative. They tried to do that thing where they stick the paper in your eye but my eye burned too badly – I don't remember what the doctor exactly said but she said the test wouldn't be usable and took it out. I will definitely ask if there are other tests we can do for RA or Sjogrens like the lip biopsy – thank you so much! One of my worries is just that my doctors are struggling to find anything that could explain such varied involvement in my brain, liver, joints, etc.

@jenniferhunter Thank you for the book! I will check it out – I like reading!

@lioness Thank you for your kind thoughts! It has been very hard but I am determined to figure it out – I just get a head start 🙂

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@zebraclaire97 Your welcome remember one thing you are your own advocate and listen to your body .

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@sugarboo

Hi Claire so sorry to hear of all your ailments. I too have suffered for 35 years with word stuff. I now know it is from Leaky Gut syndrome”. Go research it, and you will find a wealth of information. Pub Med is a great site. I went to an interventional dr and got tested through the Great plains Labarotory. Tests results proved I have overgrowth of Candida Albicans In my intestinal tract and they cause all kinds of health problems like you are describing. Anti fungal medications can help greatly. I took them for three straight weeks and after I felt amazing! Most of my health problems went away! But they came back after two years. The Candida albicans thrive in the body if your PH levels are off. It’s difficult to figure out how to fix the PH levels. Go look into the Candida diet and go from there. I hope this helps you.

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@quiteachiver75 Hello 👋 I found another site about Leaky Gut it is healthy women I found the photos helpful good luck

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I had the exact same result. First I was told the doctor was 95% sure I had Scleroderma. Then the doctors opinion was Lupus. My diagnosis switched between the two for several years. The last diagnosis was Mixed Connective Tissue Disease.

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