Can you test negative and still have auto immune disease?

I have been tested for numerous things and all have came back normal....I am wondering can you have auto immune disease and still have an auto immune problem?  My doctor feels strongly that I have an auto immune disease but we have been unable to find anything in my blood work.  I have severe vertigo, leg weakness, muscle spasms, history of Uveitis, extreme fatigue, and now a weird rash on my stomach.  Thanks for your help!

[kygirl59]

Deebrown30,

Yes you can.  I have had numerous autoimmune disorders-thyroid, vitiligo, and an autoimmune blood disorder and I have none of the classic markers.  My endocrinologist recently told me that whenever I have a medical issue to make sure my doctors 1st look for autoimmune issues.

Good luck!

[deebrown30]

I am assuming that you are in Ky from ur name....as am I.  I test okay for everything but have all the clinical problems....i wish that they could give me some answers.  How are you being treated?  Did they treat you blindly(not knowing)?  Thanks for your help

[kygirl59]

deebrown30,
Yes, I am from KY-go CATS :-).  About 25 years ago, I developed bleeding under the skin and severe stomach pains.  I was lucky, my PCP sent me to a hematologist who diagnosed it immediately as an autoimmune blood disorder.  I went through many years of hospitalizations and treatments and finally went into remission.  I have recently relapsed and am in treatment again.  In the past they did plasmaphersis, but now I am on Cytoxan (can be pretty nasty) and have just gone off of oral prednisone.
About 10 years ago, I started having symptoms of hypothyroidism.  I had a different PCP who did tests and said they were normal and kind of blew me off so I made an appointment with an endocrinolgist and she has been great.  She said that she doesn't just look at the numbers and put me on Synthroid.  I also have had a pretty severe Vit D difficiency that she has been working on.  And then I have the vitiligo which is very obvious and is know to be autoimmune.

However, whenever I have ANA tests etc, thay are always normal.  I have been to Johns Hopkins and Cleveland Clinic and both have verified my blood disorder diagnosis.

What type of rash do you have on your stomach.  Mine looked like a rash but it was actually petechiae-bleeding under the skin.  I get it on my stomach and arms and legs.  
What type of doctor are you seeing.  I see a hematologist, but many with autoimmune issues see a rheumatologist.  I would keep pressing and perhaps try different doctors.  I, like you, have many symptoms but if they only looked at autoimmune markers I would be left untreated.

~ky

[deebrown30]

I have seen a PCP , a retina specialist(for  the scleritis), and a rheumatologist.  I have an appt for the ent docs on the 26th and endocrinology in March.  My thyroid is weird.  Some numbers are high some low ...but I am gaining weight and losing weight.  I cannot balance it.  They keep saying that my thyroid is not bad enough to treat but my testoterone levels and some of my female hormones are out of whack!  Thank you for your help and I will keep you posted.  This rash is small red areas.  It seems to come out of the blue and fade the same way...it is really strange.  It doesnt itch...sometimes it burns.  Again, Thank you for your help!!  GO CATS......UNDEFEATED!! LOL

[kygirl59]

Is your rash a raised rash? Can you tell if it is irritation or is it like little pinpricks?  The petechiae that I get is like little pinpoint sized red dots that do not blanch if I press on them.  They are little hemorrhages of small capillaries in the skin and they do sometimes burn a little.  They are like little tiny bruises and that is the way they fade-very gradually, like bruises.  My blood condition is actually caused by an allergy to mercury.  I went into remission for 10 years after I had all of my fillings removed.  I had a relapse this past year due to a MRSA Staph infection-didn't realize that was a trigger.  When I 1st had a problem I was at UK and the doctors told me to change soaps!  I was fortunate that my PCP at home took it seriously.  
With autoimmune conditions, it can be really difficult to to pinpoint, but you just have to keep looking.  Once you do have a diagnosis, everything else starts to make sense.  All of your symptoms might not be due to any 1 disorder, mine are not.  But if you can get that 1 diagnosis, then your doctors can start piecing it together.  I still baffle my doctors just about everyday but at least they know to start with autoimmune issues when I have a new symptom (and remember I have no classic autoimmune markers).
My endocrinologist has really helped me. If your hormone levels are out of whack that could be at the root of your problems, but you have to know why they are out of whack.  And like I said in an earlier post my thyroid levels appear normal at 1st glance, but my endo looks past that and digs deeper.  With your symptoms of gaining and losing weight, you could have something like hashimoto's thyroiditis.  I had this when I was younger and I had the same problem, sometimes I would gain and sometimes I would lose.  It is because your thyroid is swinging back and forth between hypo and hyper.  I felt horrible with this.  
I hope you figure something out soon.  Let me know if you have other questions.  It can be a real struggle but you just have to keep believing that they will figure it out!

And..we'll keep our fingers crossed for Saturdays game and hope for 18-0! :-)

[deebrown30]

I cannot wait to see the endocrinologist.  i think that doctor will be the one to help me.  My rash is raised and it comes and goes withing hours.  It is very strange.  My nails are also very rigid and my toe nails fall off at times.  My hair was falling out but i think that has slowed down some. My skin is so dry I use 3 different types of creams and body butters and I still crack and bleed from it.  Mainly on my stomach.  It is very gross and scary to see sometimes.  My libido went totally down the drain but i swear the worst part is the vertigo and the jello-y like legs.  It seems I never have energy.  I sit around a lot.  I am seeing UK doctors because when i first got sick I had no insurance.  Now I have health insurance and i am wondering if i should get away from UK?  Maybe you can help me with that decision.  Do you think that UK doctors are as trained as the others?  Yes i cannot wait this game tomorrow! I hope we knock em out!!

[kygirl59]

Are you talking about doctors at Chandler?  I was seeing the school health center doctors, not so good!.  I think the doctors at affiliated with the hospital are probably pretty good.  
The more you write, the more it sounds like you might have thyroid issues, which cause dry skin, etc. But keep in kind that you might have more than 1 thing going on.  I have many different symptoms-some are attributed to my blood disorder, some to my thyroid and others to infection problems that I tend to have.  Have they done a infectious disease work-up on you?  At one time my hematologist and an infectious disease doc  tested me for every test you can imagine because I had a white blood cell count of 40,000 that would not go down.  One of the ones they kept coming back to was Lyme disease although it continually came back negative.
Back to the doctor thing-if you are not happy with your doctors or if you think they are not taking your problems seriously then you should make a change!  You have to take charge of your own healthcare which I know can be difficult when you don't feel well.  I recently switched my PC doctor because I just felt like I wasn't getting what I needed and I am so glad that I did.  It was hard to make the switch because I had been with my doctor for quite a while.  I wrote him a letter telling him that I needed a doctor who could follow me when I was in the hospital (mine didn"t make hospital visits) and thanked him for all he had done for me and believe it or not I got a call the day he received it saying he understood and would take me back if anything changed.  It is hard to do when you have no evergy, but in the long run I am much happier.  Maybe your endo will be the one to crack this!

Keep me posted and let me know if you have any questions.  Good luck!!

[deebrown30]

well i did not have health insurance so I have being seeing  residents.  I love my pcp...she is awesome!  But I am not too happy with the others and the neurologist was a total jerk!  I want to be tested for Lyme but I want the western Blot test...the tested me with the elisa testing and it was negative but i hear that the western Blot is WAY more accurate than the other.  When I was 16 I had bells palsy and again at 21.  I thought that it was normal to have recurring bells palsy so i did not go back to the doctor with the second round.  From what I hear now it is highly unusual to have it twice unless you have an underlying health problem that would cause it.  I used to play in a wooded area when i was a child and I was biten numerous times by tics.  i used to find them in my head when I was in the shower and they had been there for awhile.  Bells palsy is a symptom of Lyme disease.  Who knows I just want some sort of answer.  I am only 34 and I feel 94..lol

[kygirl59]

It is my understading that it is difficult to diagnose Lyme disease with any tests and that several may sometimes need to be performed in order to get a diagnosis.  However, it sounds like to me that you could have your answer-at least to some of your problems.  I would insist on the Western blot and go that route until it is exhausted.  If you had Bells Palsy and that is one of the symptoms, that is where I would look!!

[purplekedi]

Hi ladies,

Just wanted to give another example. I was diagnosed with Hashimoto's in 2002. But first the docs were sure I had Lyme disease. Anyway, as it is I never felt 100% even when the blood works are fine yada yada. Last month, I finally had antibodies for Sjogren's but I've been having the symptoms for years. Never showed in tests. My doc would give blood test slips for future and tell me to wait to feel my worst and then to have the blood tests. After a couple of times it showed up. So there...

I also have a lot of experience with doctors. I move a lot so I was first treated in Turkey with antibiotics, that was the very beginning. I was diagnosed with Hashimoto's
in New York by a great doctor and was really sad to leave him when I had to move again. In Israel I had doctors that told me all is in my mind and then in London I had a doctor who refused to do any tests other than thyroid cuz he was just bored out his life and hated his job. At least what I thought. Finally when I moved to Australia I found a great doctor and also explored alternative medicine so it's really important that you find a doctor that you like and takes you seriously. IT IS SO SO SO IMPORTANT!

So yes, you can easily have an autoimmune disease and it might not show up in your blood work. Feel better!

[purplekedi]

Ladies,

Thyroid is a problem. Taking thyroid med is a headache. And as much as I love the UK, don't get me started on the health system. I know cuz they screwed up big time with me and now I'm picking up the pieces. Anyway, that's another story.

If you're taking the Thyroid hormone and not feeling good, you should have a look at this page. I found it last week, and all these years of taking the thyroid medication none had told that it interferes with so many stuff! I've been trying and actually do feel much better. But then again, I have also stopped coffee, tea, alcohol, cigarrettes and don't eat any ready food. Always cooking at home with fresh ingredients. Much cheaper and easier too. Cuz I feel better so I have more energy and I don't need nasty ready foods with chemicals in them.

So we have to avoid iron, calcium, fluoride and soy AT ANY COST for at least 4 hours after taking the medication. (Mind you there's a lot of fluoride in your tap water so you better start buying some pure water. Brita and other filters don't get rid of this fluoride either)

Anyway, here's some stuff that can be useful.

http://www.anapsid.org/cnd/thyroid/thyroid6.html
http://thyroid.about.com/cs/toxicchemicalsan/a/flouride_2.htm

Also, I found out about this article yesterday. I have also been Vitamin D deficient, and the weird thing I spent a whole summer in the Mediterranean and even now it's summer here and I get my sun early morning and late afternoon as the sun is harsh here in down under. So my doc also thinks it's weird. The article I found yesterday shed some light on this subject. Some autoimmune diseases can be cured it is believed. And I'll go to my GP to talk about this first thing next week.

So much to say... But I'll leave you now.

Cheers!

[kjelltp]

With your kind of disorders, do not expect too much help from conventional doctors (unless you just want symptom supression).   If you want real help, seek a good N.D:

It's not believed that AI disease can be cured, it's a fact.   The body can pretty much heal anything given the right conditions.   A good friend was cured of Hashimoto.  If the immune system can be modulated back to normal "operations" it can be done.

As far as the VIT-d problem, you may want to look into the Marshall Protocol.  It's here believed that the VDR (vitamine D receptor) is "hi-jacked" by the invading problem and taking D will just make matters worse.    Just a suggestion, I have no experience with that protocol, nor done it myself.

[deebrown30]

Thank you all for your advice....I am willing to try anything to feel normal!

[purplekedi]

Thank you kjelltp. I see now that I started to talk about the marshall protocol but completely forgot about it half the way through the paragraph. Call it brain fog :) I initially heard about the marshall protocol here and got very excited about it. I find that a good GP and a good naturopath working together work for me. It's probably just my luck that my GP and naturapath are also friends with each other so it works. But I find that more GPs are becoming open minded regarding treatments and autoimmune diseases. Or maybe it's just the approach in Australia now. deebrown30, if you're seriously thinking of moving away from UK, consider Australia. It's easy for British citizens to make it here and the alternative medicine options are endless.
Peace!  

[Lori707]

I have been sick for over 2 yrs while being hospitalized twice. Seen many doctors. I had Lymes disease about 24 yrs ago and had the typical bulls eye rash. I used to live near Lymes,Ct. Half my block had Lymes. I was treated with 2 weeks of tetricycline orally. I felt much better. Then about 2-3 yrs later I came down with Lymes again but this time I didn't have that rash. I received IV antibiotic therapy every day for 3 weeks. Then again I felt fine. Fast forward: I now live in another state for many years. I started to not feel well 2 1/14yrs ago. I had that same feeling as when I had Lymes so I asked my doctor is he would test me for Lymes. He said NO. (besides being my internest,he subspecializes in Infectious Disease). I was getting worse, neurological and arthritic problems. I went through different neurologists while taking all types of tests,rhuematologists,endocronologists, gastrointerologists,etc. I begged ALL of these doctors for a Lymes test but they all said NO. I did test positive for autoimmune RA Factor(rheumtoid arthritis) so two docs diagnosed me with RA and two said I don't but they can't put their finger on it. About 3 weeks ago I took my husband along to my visit with my rheumatologist and cried to PLEASE give me a Lymes test. Finally he said OKAY!  I received, not a call, but a note in the mail from him stating that my Lymes test came out POSTIVE!!! Was he too ashamed to call me? I took that note and a copy of my blood work to my infectious disease doctor and put it on his desk as he was sitting down and I reminded him that for over 2yrs I've been begging for a simple test. It seems that either I was under treated for many years or the Lymes went into remission and came out. Now I have a Picc Line inserted in my arm that goes to the heart which is where they put the IV through. I have to have this done everyday. It also seems that I have Chronic Lymes and stage 3 of it.

I have read that the Elisa is only 65% sinsitive. I took the Western Blot. But both can come out with a false negative. I'm sure I had Lymes because of the bulls eye rash and was backed up by the county health department.

I would say be an advocate for yourself and do anything you can to get tested for Lymes. If it comes out negative, repeat it in a few weeks. If the second one comes back negative, repeat in a few weeks again.

Also, I've read that Lymes can trigger autoimmune disease or can mimic it. I've been having a terrible time getting my Vit.D normalized. My count was 8.5 and got osteoporosis and last year lost up to 10.2% of my bone mass. I now take Boniva. I was on 50,000IU weekly for months along with an additional 2800 Vit.D3 daily and I'm still low. My endo doc took me off the 50,000 D2 because she said I wasn't absorbing it as well as the Vit.D3. Now I take 5,000IU daily and am due for another blood test next month. ALSO..she's quite sure I have Hashimoto thyroid. I've read that many Lymes patients get Hashimoto.

Wishing all of you the best of health!

[deebrown30]

I thank you so much from your insight on this.  If I have Lymes I have had it for many years.  I am def going to get tested...

[want2bik1]

Autoimmune disease result in the body attacking it's own cells.  The body attacks these cells because it is doing what it is suppose to do.  These cells have toxins in them and the body is designed to rid itself of toxins.  There are many toxins in our enviroment so inorder for us to get better we need to identify the toxins we are expose to and get them out of our bodies.  Each of us have a different enviroment so what we are expose to is different.  We can read as much as can and try and elliminate as many of these as we can.  Common toxins responsible for these problems are mercury, lead, arsenic, aluminium, artificle sweetners, hydrogenated oils, transfats, pesticides, virusis, ...etc..  Once the body accumulates more of these toxins than it can deal with we get sick.  They have many names for these diseases but it all amounts to the fact that the body has an overload of toxins.

Some people are lucky and there genetics allow them to deal with these toxins better than others.  It may take you 20 years, 30 years , 40 years or whatever length of time before you get enough of this bad stuff in your body to make you sick.  Once your get to a certain level of these toxins that your body can no longer deal with you get sick.  When this happens you have to start getting this stuff out of your body.  The bodies mechnism for dealing with this is the food we eat.  The raw fruits and vegetables allow the body to detoxify itself naturally.  If you have spent 40 years putting this stuff in your body you should not expect to get it out in a week.  Think it takes a change of life style.  The only way to find out if it works is to try it to see if you feel better.  The paleo diet has shown good results in treating these diseases.  A faster way of dealing with the problem is getting a book on Natural Supplements you can take to speed up the process.  If you look at it logically if you keep doing what you always did you will get what you always got.  You must make changes to see a different result.  Everyone is entitle to good health and it is about what we choose to put in our bodies.    

[LivePainFree]

WHAT specific changes need to be made for the body to heal?

[FurballsMom]

I don't have any of the markers either, but I am dealing with autoimmune issues.

[deebrown30]

what are some of your symptoms if you do not mind sharing?

[FurballsMom]

I have Multiple Chemical Sensitivity, so I have loads of allergies from environmental allergies to food allergies and sensitivities to pharmaceutical allergies and sensitivities.  I also have chronic migraines, asthma, IBS/GERD and fibromyalgia.  I've had renal failure in the past that had no explanation.

[ginamjones777]

Hello Oh WHERE TO START! LOL
I was diagnosed with Ulcerative Colitis at age 16, then Endrometriosis at age 24. By age 26 I had to have a COMPLETE Hysterectomy, then by age 33 I had to have my whole colon removed with reversal of colostomy bag. Then within 2 years of having that surgery my thyroid shut down and I have been on meds every since. Within 8 years later I went to an allergist who did pricks on my back and detected over 90 some food and enviromental allergies including wheat, tomatoes strawberries and too many to list here. I also have over 30 to 50 drug allergies.
So I had to go on a chicken and rice/ rice cake diet for years, I have recently just given up and added more things in my diet because I was so tired and weak I could not handle it anymore. In 2002 I was diagnosed with Intersital Cystitis. Then with in that next year I began getting vitilago. In 2005 I had to have my gall bladder removed. Then in 2009  I went to a Dr at the Eisnenhower Center in Palm Springs and he took one look at my skin and records and said that he was not even going to examine me because I obviously had severe auto immune diease and needed to go straight to the Mayo Clinic in AZ.
So I came down here to AZ first for a visit and they were doing so many tests my husband and I decided to move here so that I could start treatment to re-pigment my skin from the vitalgo.
Thay have literally done hundreds of tests on me since I have been here in a little over a year and I have probably been put under for tests at least  20 times. I have had a bout with panceratitis, they have found some kind of mass on the left side that loops in and out of my small bowel that they would rather not touch UNLESS IT GROWS (can you believe that?) plus they have found cysts on my kidneys and liver that they are watching. Also they say the cause of my severe pain in my bones and muscles is from Fibromaylgia (fibromyalgia). I am unable to tolerate all the drugs for the IC and the Fibro so I am taking the same meds I was given when I was in Tn for that and they are addictive but I make sure that I do not take much of them. Meaning I do not even take one whole pill at a time. I cut them in half. Oh I forgot to mention that they found an E-Coli infection that I had had for years and treated that and I am better without that bothering me.
Also they have found that I do have pouchitis in the J-Pouch that they put in there off and on.
But I have been poked and proded SOOOO much that my viens are literally scarred over and the only viens left are ones I have purposely saved for emergency, in my neck and ankles.
The Drs here ALL say that each and every illness is immune related but are ALL isolated instances! I am SOOOOO FRUSTRATED I can hardly see straight! This is supposed to be the best  place in the WORLD to go to!
I KNOW INSIDE that there is a root cause they are not finding! I feel it inside. I am literally so sick I can not get out of bed from pain some days and I am sooooo sick of being sick! I do not know where to turn now. Does anyone know of a Dr that will not just throw his hands up and say this same thing but yet roll their sleaves up and dig in there and do WHAT EVER IT TAKES to save my life? It would be great to have a Dr in Calif or here but I will go anywhere at this point I have NO quality of life. I am a Certified Massage Therapist and I can only take one or two clients about 3 days a week and I have to dope myself up to do that  but I can not live off disability alone! Oh I forgot to mention the Dr I saw today that said he would rather not do laproscopic surgery to make sure that the mass on the left side is not cancer did give me the option to have it done but he said the risks outweigh the benefits. So I am supposed to think about it for awhile.
Also I forgot to mention my Trigylcerides are staying about 440 and I have high calcium in my blood and urine but they tested me for Parathyroid and it came back negative.
I need some answers and help here let me know what you all think.
Gina J
But now they are at a stand s

[Genie421]

Hi,
Yes, all your tests can be negative especially if your not currently in some kind of flare. I started in the mid 1980's with a cystitis that had no cause and doctored with that for 6 years. Back then, I met a female urologist who suggested I had a food interolance that was weakening my system. Pretty heady stuff for 1992. When I compare the diet she recommended to the histamine intolerance diets I see today they match 100%. I found that going off that diet produced flu-like symptons immediately. But just when I thought life might return to normal I experienced a sunburn (unusual for me as I tan easily). That was the beginning of intolerable itching that lasted for well into 2 years before it gave me a few months break. I won't bore you with all the medical response. Those of you who not are not new to this know the frustration. I continued to get flares of intense unexplained purritis that ALWAYS started on my right shoulder and side, sometimes moving across the trunk and lower adomen. Nothing relieved it. Now, thank goodness it comes early April and because docs are now realizing this isn't fungus, nerves etc I finally can at least get one or two does of predisone to take the edge off the inflammation.
About 1999 I also started with swollen glands (always right side) but was told no meds. So, ok I itch and have chronic swollen glands but there's nothing wrong right? Next started the frequent long bouts with horrible sinus infections that lasted for 6-8 months. No antibotic (antibiotic) seemed to work except months of levenquin. they usually ended by spring just in time for the itching to return.
In 2003 I experienced a horrible pain deep under my left arm in what I thought was a gland area. At the time I was performing hospice care for an aging parent and just tried to ignore it. But, within the few months I began to notice that my left hand would claw and I couldn't move my arm and shoulder normally. I also noticed a lack or strange sensation in 3 or my left toes and a similar strange sensation wrapping around my right leg to the toe area. Because I was very active and atheletic I tried to strengthen muscles or back off from things I thought might aggrevate it. So, I treated these as injuries. When my right hand started to be unable to grasp or hold things I sought help. Again, I won't detail all the misdiagnosis and recommendations. I finally saw the head of a major ortho clinic who felt that a virus had invaded my long and brachial nerves. These took about 4 years to heal.
But, I now see that whenever I itch or have the infected glands the semi-paralysis returns. I have told physcians (who I do avoid if possible) and what they can't see (takes forever to get appt) they just say wait and see. My internist finally sent me to an allergist who did every test there was including all the auto immune and they suggested idopathic auto immune or we don't know.
I just went through all these tests again and everything is negative because I now have had infections in the salivary glands so fierce at least 3 times in the past 6 years that I broke out in boils (oh yuck) on my face. I probably have not included all the other "things" that just aren't right here like the large amounts of hair lost, constant low grade fever and muscle aches but the point to this long post is sometimes that auto-immune issues are so complex that they do not point to one of the 80 or so known that they can see a test result for. I really believe if your not having a full blown issue at the time of testing that until you have one of the specific diseases they know about you are just a case study.
Don't give up hope but try and always be aware of your diet (histamines), avoid too much stress if possible and do whatever exercise you can tolerate.
Although I am convinced I have lupus (first cousins diagnosed at 40) I am not really buying into their prognosis that I probably also have Sjorgin and arthitis. Yesterday, an ENT said I probably test negative now because I only have a mild disorder. I just smiled and thought about how if you would have seen me 2 weeks prior and really listened you would have observed a right hand that just would not work as commanded in addition to the swollen glands. Although the journey is probably not over for me I guess I should console myself with "someday" the test will be positive. Thats a quote from this last doc. Who of us really cares if you put a name to it just help me when it flares and help me figure out the triggers. My quest has been 20+ years. Sometimes your best taking care of yourself if the symptons are not more than you can tolerate and the disease has not attached any major life threatening organ. Just my opinion here. I basically take each day with the aches, pain, fevers, hair loss, paralysis etc and do my best.

[Lindaua81]

Most doctors don't know to test the thyroid ANTIBODY. It is a different test than the regular thyroid tests. Only this test will show you have Hashimotos.At first I gained 25 lbs, was tired, freezing, etc. Felt very swollen. then continued to feel worse and started getting sick a lot.Started losing weight and had weird rashes, fevers, stomach pains, hair falling out,etc. I went to 4 doctors and had two cat scans looking for cancer.It was like it went systemic.Turned out I had Hashimotos and my vitamin D level had dropped to 11.I was never so sick. I am now on vit d supplements and synthroid and I feel great if my levels are around 1.4. numbers seem low, but that's the only way I feel good with this disease. If the number starts climbing and I don't get more synthroid, the first thing I feel is my lymph nodes in my throat swelling, tiredness, freezing, etc.Get the thyroid antibody test. it is worth it.Good luck!!

[bdixie]

I have Ankylosing spondylitis; and test negative.  There is no doubt it is the correct diagnosis though.  

Incidentally, I have a genetic marker for Lupus, but no disease.

I see a specialist, and have had 2 other opinions confirming the same dx. All tell me that the genetic markers are not present in everyone.