Can you test negative and still have auto immune disease?

[deebrown30]

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]

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.