If you have firsthand experience with and/or professional knowledge about Autoimmune Disorder or Related Disease, would you please share it?

I figured I’d put my personal story as a comment, to minimize the wall-of-text effect of the details above.

For several years, I would inconsistently get raised welts with sun exposure, I’ve had undiagnosed mystery rashes (some itchy, some not) and consistently high eosinophil counts. In the fall of 2011, I started having heel pain in both feet, and as it got worse, I self-diagnosed it as plantar fasciitis, and heel spurs were confirmed by an orthopedic hand and foot specialist. But when it didn’t respond well to traditional treatments, I started to suspect there was an internal cause. Around that time, I developed the second, and worst, mystery rash, that started as a couple dots on my shins, then on my forearms and eventually spread over much of my body. It would start to diminish then flare back up, but never on a day off when I could go to the dermatologist; so by he time I decided I should go anyway and got an appointment, it was nearly gone, so they could only speculate.

After about 6 months of dealing with my bad feet and having excruciating pain when walking, I started to notice that my hands were curling up – like my tendons were shrinking. I had a regular physical scheduled, so I mentioned it to my GP, who tested me for Lyme’s Disease (common where I live, but it was negative) and tested my Rheumatoid factor and ESR that measures inflammation – both of those were a little bit above normal, so it was recommended that I see a Rheumatologist. They ran more specific blood work, but none of that was beyond the norms – I have something wrong with me—but we have no idea what it is. The Vitamin D was low, so I was told to take that, and we started me on one of the oldest and mildest drugs for Rheumatoid Arthritis, sulfasalazine. At first, I did well, and only realized after it was gone, that I had been constantly feeling like I was running a low-grade fever. The heel pain improved, along with orthotic footwear and continued stretching. After about a year, I started feeling worse again, so we upped the dose a bit and it was pretty good for a while! Now another year’s gone by and the disease is still progressing and hitting my hip joints, too

@hearkat As I’ve mentioned to you, a relative has something similar she’s being dealing with. I don’t want to write details here but if you’d like, I’ll e-mail her and she if she would want you to be in touch with her. She is a fount of information on all subjects under the sun!

I completely understand your frustration and concern. My oldest son is having issues and they have yet to figure out why. They are saying it’s an autoimmune response to viruses and that “maybe” he’ll grow out of it. I’m not sold on that diagnosis yet. Here’s what happens to him:

He’ll suddenly spike a fever (103 range), then develops a hive like rash (it’s not quite hives, but that’s the closest thing to describe it). The rash starts on his head and includes his lips and tongue (obviously leading to concern about his airway). The rash then spreads down his body, going to his chest/back, then arms/legs, and then goes away. During the rash, he also has swelling in his hands and soreness in his joints (especially his hands). This all occurs over the course of hours or days depending on the severity. Recently, it has been getting shorter, but at its worse, it lasted a week. While all of this is going on, he is very fatigued and lethargic. He sleeps most of the time and complains of throat and stomach pain and doesn’t want to eat much.

We’ve seen his regular doctor (which is a family doctor), a pediatrician, an allergist (they originally were thinking an allergic reaction), and an infectious disease doctor (since they thought it was related to exposure to viruses). The biggest challenge we have now is that the doctors want to see it in person, but when it happens and I try to call to get him in, I never seem to hear from them in time.

I might have missed it, but why do you think that the rash and the ligament issues must be related? Is this connection the only thing that makes you think you are having autoimmunity issues?

No, @dappled_leaves, I don’t ”think” that I am ”having autoimmunity issues”; my primary doctor diagnosed me with an autoimmune disease via blood tests and the Rheumatologist’s lab work confirmed it. However, my results were non-specific, in part because I noticed it in the earliest stages and I have so many varied symptoms, which include the mystery rashes and others I’ve not listed. I didn’t ask this question to just pick apart my particular case, but rather to share experiences and knowledge so that anyone with an interest in the topic can learn.

@Seaofclouds – It’s especially scary for children and their parent, and there are Pediatric Rheumatologists – which is whom I’d advise you to consult next. We have a Jelly whose parent is a Peds Rheumy and used to be at CHoP – unfortunately, they’ve moved out of state; but they were kind enough to give me some names of Adult Rheumies in the area – I’ll send that Jelly a note and ask if they would contact you about it via PM. We recently had a pediatric case of autoimmune sudden hearing loss in our practice. How scary for a child and their parents to go through such a trauma – we’ve referred them to CHoP, as well.

@janbb – you could share this post with your family member, if they’d like to chime in – as a fount of information, it sounds like they’d make a terrific Jelly! If there’s another forum in which they’re active, you could ask what that is and list it here as an additional resource.

@hearkat That is scary. Anything with your children is scary, but unknown things that could be life threatening are horrible. We have to keep a epi pen around for my oldest in case the swelling moves to his airway. We also had to teach him how to use it because he might not be able to get us in time. It is hard as a parent to see that fear in their eyes.

We discussed autoimmune in one of my classes this summer and a lot of the autoimmune disease are diagnosed by ruling out everything else. That makes it difficult. There is so much we are still learning about too. It’s great that technology is advancing and we are learning more and more about how the body works, but it’s hard when things come up that we haven’t really figured out yet.

@hearkat I’m not attacking you. You didn’t say in this question whether or not you have actually been diagnosed with a specific disease or disorder. In fact, the whole point of your question seems to be that you and your doctors don’t know exactly what you have. If you are being vague for reasons of anonymity, I get that, but you should understand that it’s difficult for someone reading your story to know the difference.

I’m not interested in “picking apart your story”, nor do I disbelieve that your symptoms are of something real. I am close to a number of people who work in or have done work in immunology (as well as people with immune diseases) and it seems to me to be an incredibly difficult thing to diagnose. Whether or not you know what you have (and again, your story makes this very unclear) makes a big difference in terms of what you should start thinking about next.

I also have a family member that recently was diagnosed with Idiopathic Transverse Myelitis. He woke up one morning unable to walk or control his bowels/bladder. He spent a month at HUP and is now in an acute rehab learning how to manage being in a wheel chair. While at HUP, they ran tons of tests and tried a few treatments. Nothing worked though and he still cannot walk. He agreed to be a test subject though, so they took some extra blood and stuff and are doing some research and tests on it to see if they figure anything out. It’s scary to think you can go to bed fine and wake up unable to walk and no one know why.

Without going into the long, boring details, I had Guillain Barre Syndrome about 6 years ago. A month in the hospital with IVIG and extensive PT and I was home with 75% of my strength back. It’s a fairly uncommon autoimmune disease where your immune system attacks the myelin sheath that covers your nerves. I got it because my daughter got a little stomach virus, and most people around us got it, but I was one of the rare ones that remained well. Two weeks later, this was how her virus manifested itself in my body.

@dappled_leaves – I suppose that where I state that the blood work showed that I have elevated RF and ESR levels and the specialist’s tests confirmed it, I didn’t use the word ‘diagnosed’; but I I thought it was pretty clear since I am receiving treatment and monitoring from a Rheumatologist. I don’t have the concerns about anonymity that some other Jellies have on the site; so I wasn’t being vague intentionally, it was more for brevity.

Therefore, I will clarify where I stated that ”I have something wrong with me—but we have no idea what it is,” to saying, “I have been diagnosed with an auto-immune disorder, but is it non-specific”. I recognize that the non-specificity of my symptoms and my blood work makes it harder to know what to do next, and that is where my frustration comes in. I don;t know if there is additional testing that can be done, if I should also see an Allergy/Immunology specialist, if I should get Physical Therapy, or what. My Rheumy hasn’t recommended any of these, but I wonder if they’re being proactive enough.

@jca – Like me being one of the 0.1 percent who get pregnant on the pill, do you wonder why you luck for beating the odds couldn’t have been for winning the lotto? My bff has Epstein-Barre and Psoriatic Arthritis, and while I’ve been more sympathetic to her than other friends and family, now that I know firsthand how intense the fatigue is and how miserable the flare-ups feel, I wish that I had been even more supportive.

@Seaofclouds – It is truly scary when there is a sudden onset like that; at least I know my body well enough that I knew something wasn’t right and asked for testing. I have a high tolerance for pain, but I felt that I was too young (46 at diagnosis) to be experiencing these changes in my body. I was surprised to learn that Multiple Sclerosis is autoimmune when I first started reading up on this stuff upon diagnosis. That can also come on gradually or suddenly without warning.

I wonder if there’s increased incidence of these conditions, or if it’s just that we’re more aware of them through having internet access.

@hearkat: I should have added that after about 2 months, I was at 100% of my strength and endurance and the neurologist said that as long as I avoid vaccines, I probably will never have Guillain Barre again.

@hearkat I’m not sure if there is an increased incidence or if it’s just that we are learning what things are. Before we knew about the autoimmune causes of some things, they would look at the general symptom and diagnose it based on that. Now that we are learning more and more about what different things in our body do, we are able to pinpoint more problems.

I have an in-law with MS. I can’t imagine having a progress disorder like that and knowing that it will just continue to get worse over time. She handles it well and tries to hide some of her decline, but we all see it. Sometimes ignorance is bliss and there are times I miss being unaware of what is to come with some medical situations.

My rheumatologist once told me you have to wait until you are really sick to finally get a diagnosis. He sees women all the time with mostly nornal tests who don’t fit into a specific diagnosis, and he absolutely believes they no longer are well, but medical science would say they are perfectly nornal. He is one of the rare few doctors that actually believe those women I think, and it is most often women.

I actually don’t believe our bodies just go haywire. I believe there is an underlying cause that medicine has not figured out yet and our bodies are reacting, sometimes overreacting. Find the cause and then you can treat it rather than treating the symptoms. Calling diseases rheumatic is akin to blaming the patient. So many illnesses were considered rheumatic, or still are, and have proven to be caused by infection. Rheumatic heart disease, Lymes, I even include stomach ulcers. I think allergies and chemicals can also cause rheumatic responses. I think many many doctors just care about giving the patient something to make them feel better, treating symptoms and don’t care about cause. Cause is the researchers focus. Most doctors consider tasting symptims as a treatment, but most patients, especially women, want to know the cause and to get to the bottom of it all and be cured. This leads to very frustrating conversations with doctors, and it’s very depressing for the patient to not have real answers. Medical science just doesn’t know everything unfortunately. Doctors basically are trained to not believe something exists if it has not been proven. But, just because something has not been proven it doesn’t mean it doesn’t exist or isn’t the cause of an illness, it sometimes just means it has not been tested yet.

As far as your rash, next time you have one just march right into your doctors office and show it to him. Don’t wait for an appointment. Seriously, I have made the mistake of being intimidated to do such a thing, and really, your doctor should be perfectly willing to glance at your rash for 2 minutes when you are suffering. If you want you can ask him if it is ok if the next time you get the rash you come in immediately. Often the doctor will say yes, it is the gatekeepers out in the front and on the phone making appointments who are the unreasonable pain in the ass. I know they just follow direction from the doctors, so doctors are not exempt from blame, but doctors are the ones who recognize when an exception should be made.

My ESR was slightly elevated during the worst of my GYN problems. It lasted about 8 years. I also had swollen lymph nodes for years. The cure was a mega dose of antibitiotics. I am not completely cured of my problems, but I am significantly better and my ESR is normal.

When I hear people have foot pain or any muscle pain I recommend vitamin D testing. You already have had that done. What I recommend is making sure your vitamin D level stays over 40. Taking vitamin D, but still having below nornal or very low normal D blood levels, means the dose you take is not therapeutic and so you don’t get the benefit of feeling any better. it’s like an adult taking a baby aspirin for fever. It isn’t going to do anything.

Skin problems I usually mention getting your thyroid checked, although your rashes don’t sound like the typical thyroid rashes.

Some people advise doing things to boost the immune system, but actually rheumatic diseases are the immune system going wild. Autoimmune pharmaceutical drugs usually surpress the immune system.

I really have sympathy for all the crap you have gone through and still go through. If I were you I would get a full panel of vitamin and mineral testing done if you have not already. D, B12, and iron are the obvious ones. Also try magnesium, led, mercury, and I am not sure what others. I would look carefully at my thyroid testing if the tests have been run previously and found to be nornal and see if you are anywhere near the edges of being outside of normal. Only endocrinologists interpret the results differently than the labs. You’ll want to look at TSH, T3 (either total or free or both) and T4 free at minimum. Some doctors give a mini amount of T3 to patients who show basically nornal numbers, but lowish T3, and it helps them a lot, but it is hard to find those doctors. Very hard. Standard practice for most doctors is to prescribe T4 alone, especially GP’s and internists, but a lot of endocrinologists too. T4 converts to T3, but some people don’t convert it well or something.

Lastly, I do think diet can help a lot, mainly because I believe in the whole vitamin and mineral thing. I don’t believe in just taking a bunch of mega vitamin and mineral pills without blood tests that confirm the need, but I do think vegetables and fruits have vitamins and minerals we don’t even understand. I can’t eat enough healthy food to be nornal for vitamin D and iron, I have to take supplements, but when I eat well I seem to need slightly less iron pills, and I figure it probably is helping something. I wonder if the anti gluten trend actually helps people because they are eating more whole foods and fruits and vegetables. I realize there are other starches that can be substituted for gluten products, but maybe people are altering their diet also more towards more whole foods when avoiding gluten? Just a theory. I don’t think a change of diet will magically cure you, and for all I know you eat very well now, I have no idea, but I do think every little bit helps, and any relief from bad physical symptoms is a good thing.

Diagnosed with autoimmune hepatitis type 2, celiac’s disease i think those are the two main autoimmune diseases and then as they progressed i developed other issues some of it due to medication.

There is a doctor Burt Berkson and son in Los Cruces, New Mexico who have their own practice at integrative medicine.

They believe autoimmune disorders underlying components are suppressed or really endorphins over a lpng period of time that exercise and other methods of endorphin boosters don’t do enough to raise.. PTSD etc. This then triggers genetic predispositions to activate and then often as one issue goes off kilter so do other symptoms. Especially when the meds have so many side effects.

So they work on raising endorphin levels with low dose naltrexone and work on healing the body alpha lipoic ivs.

They also want you to follow a healthy life style 15 min in the sun. A specific diet. Exercise for at least a half hour a day and at least 15 min doing something relaxing. In other words making you priortize self care.

People come all over the world to visit him. He’s been doing this since the 80’s. He still preforms studies on the efficacy. He has an impressive back ground as far as his qualifications go. And his office had notebooks of peoples individual success stories. In fact many of his towns residents have been a patient of his and have a very high opinion of him.

I visited once and the improvements I made during that time were amazing. I have lost some ground during that time but still am better then I was before I left and I am overdue a return trip. I will be returning the end of August.

I was feeling horrible for months and I thought it was stress. My period stopped and I started ballooning with retained fluids and a crazy-mad appetite. I went to a few non-doctors, thinking that I needed help with stress, but nothing was helping and I was feeling worse. I finally went to my doctor and got a blood test. It came back positive for Graves Disease, which is a form of hyperthryroid auto-immune disease. I. WAS. ELATED. I finally knew what was wrong. The hardest thing to hear was that there was no cure, but I read everything I could on it, and my system reacted well to the anti-thyroid meds and I never had any other related complications. I changed my diet and exercise program. I was kinder to myself and listened to my body more and rested when I had to. It took a while, but now it is just a small piece of my life.

I was diagnosed with RA about 10 years ago, and thought I would end up in a wheelchair and dependent upon others. I can report that I am now healthier than I was 10 years ago. I do not take any medications for the condition. If I have a flare-up, which in my case means inflammation and pain in a joint or joints, I take big doses of Alpha-Lipoic acid and use ice and heat alternately on the offending joint. It’s been my experience that if I am fighting off a cold, if I get overly stressed or tired, or if I do something idiotic that puts too much strain on a joint, that’s when I have a problem. Another part of the disease that can plague me is fatigue. I’ve overcome that somewhat with regular exercise – and by that I mean daily. Obviously high impact is not an option, but I do the elliptical 30 minutes a day or walk 30 minutes.
I’ve read that cherries are good for me and tomatoes aren’t. I’ve cut back on tomatoes (very difficult) and it’s a pleasure to increase the cherries! I also make an effort to maintain a decent weight so that I’m not overstraining my joints that way.
I am fortunate that my condition seems pretty moderate compared to other people with RA. It’s my hope that I’ll never take a biologic. I’ll just reiterate – eat healthy, exercise regularly, keep your weight down.
I’ve read all the blogs and tried to keep up, but it seems to me my best friend is my body. It tells me whether something is working or whether I need more help, if I am tuned in.

Thanks for your personal input, @lynfromnm! How did you figure out what works and what doesn’t did you log everything you were eating, etc?

What Alpha-Lipoic Acid do you take? How can you be sure you’re getting the correct potency, since supplements are unregulated?

Regular exercise is my biggest challenge, and my weight was a problem before the onset of the disease. I do eat mostly local, organic, free-range, etc. The biggest problem is my portion sizes and my sedentary lifestyle.

Update: I will answer the ala question @hearkat. I have researched and found a local pharmacist that formulates its own compounds. My new doctor specified in the prescription absolutely no additives and fillers. Just the capsules minus even a color agent. I was using McGuff’s before that but those were so full of fillers and dyes. The only plus was that it was gluten and dairy and soy free.

I also just got diagnosed with Lyme’s disease which turns out to be a vastly under researched and under diagnosed disease that can cause RA like symptoms. I was experiencing them but they always attributed it to an electrolyte imbalance due to fluid restrictions and diuretics. My sister got tested after me… They were saying she had Chron’s RA and a million other illnesses.. She also tested positive. To get the most accurate result go to a lyme specialist and make sure the test is sent to Igenex. The Leading lyme’s disease lab in the U.S.

http://news.sciencemag.org/1998/07/immune-link-lyme-disease-arthritis

@Unbroken – Thanks for the update. I was tested for Lyme’s when I first presented with the complaints, since I live in a high-risk area for Lyme’s and I do know a few people who’ve had it over the years. The Lyme’s test was negative but my RF and ESR were high. I am in search of a new Rheumatologist, so I will consider getting retested.

I heard that there are some labs that do a lot of false negatives for Lymes. I would definitely get retested if I were you, @hearkat, especially if you have other symptoms.

When I was doing casework, one of the moms had a bad case of Lyme’s. She was tested by Quest Diagnostics and was found to be negative. Luckily she was a smart woman and advocated well for herself, and she knew that there was something going on (because of her symptoms). She was retested and had the samples sent elsewhere, and they found her to be positive. She looked into it more and found that Quest has a high incidence of false negatives for Lyme’s. (I’m adding this all now because last night when I typed it, I was too tired to type all those details)

When you test for Lyme’s disease, you need to have them test the synovial fluid in your joints, not your blood. That’s because Lyme disease just uses the blood stream to travel from one joint to the next, but it actually lives in the synovial fluid.

That’s why there are so many false negatives for Lyme disease.