autoimmune questions??

[kham7]

Hello all.  I'm sorry, I'm new to this but need to whine for a minute.  In the past I have had HELLP Syndrome (with my first pregnancy) which i'm told is an autoimmune disorder.  I also had a blood clotting disorder during my 4th pregnancy that required me to take heparin shots twice a day. (due to elevated antiplasmin).  That was 10 years ago.

However, the past two years have been awful.  I have a lot of vertigo which ENT docs thought might be Menieres disease.  I had an abnormal ENT test.  In the past three months neurological problems have been cropping up.  Ataxia, horrible headaches, slurred speech, confusion, etc., etc.  I was admitted to the hospital over super bowl weekend with what seemed to be a TIA.  Although nothing showed up on my MRI.  It took about a month to recover from that.

I went to see a different doc (an internist) who sat and listened to me for an hour and a half.  He did a PET scan of my brain. It showed low blood flow to the mesial temporal portion of my brain and has caused some mild damage.  My doc put me on plavix to thin out my blood to try to get better blood flow to that area of my brain and my headaches have all but disappeared.  Thank God!!   I have been diagnosed with autoimmune cerebritis and possibly autoimmune myositis (due to slightly elevated CK).  All of my regular blood work came back "normal" CBC, hepatic profile, renal profile, Vitamin B12.  But I am still SO VERY TIRED.  

I trust my doctor but I am not sure about this diagnosis.  My ANA and sed rate were normal.  Don't I need some other blood work to actually diagnose autoimmune disorder?  Or is it sufficient to say that I have already had one autoimmune disorder so it is probably rearing its ugly head in a different way now?

In the last month I have been having pretty painful stomach issues.  More autoimmune I wonder since amylase and lipase came back normal?  Or is it off to see a GI doc?  I have also had GERD and esophageal stricture.

My internist will see me back in about three weeks.  Is this how life will be from now on with autoimmune??  One thing getting better and then another thing going wrong?  I feel like I am constantly complaining about something...  I am always exhausted and don't want to be this way.  If this is how my life is going to be from now on I will accept it and pray for strength.  Just looking for hope that things get better.  

Sorry so long.

[elbamom]

My understanding is that D2 needs a prescription and that the body needs to convert it to D3 which is what the body needs and uses to help the immune system function the way it should.

D3 is ready for the body to use and also available over the counter and pretty cheap at many stores. Costco has a large amount of 5,000 IU liquid pills for example. Other shops can have the liquid or tab of D3 in varying amounts.

My level of D3 is currently 65 and I take 10,000 IU a day. I do check it 2 a year to adjust the amount as needed. My doc knows that I am on this amount and in fact started me at 6,000 IU to get me up to normal. Each person is different in what amount is needed due to height, weight, medical issues, ect. Lots more info at vitamindcouncil.

Good luck,
Elbamom

[kham7]

Red_Star thank you for your reply.  I would have always assumed that high stomach acid would be the culprit of my GERD.  At least that's what it always feels like...lol!  Thank you for the information!

[kham7]

Thank you so much for your reply!  It is so nice to know there are other people out there who understand and care.  I have not taken Nexium.  My doctor said to take Zegerid but when I went to the store it said not to take it with blood thinners so I will have to run it past him again.  He did put me on Vitamin D2.  What's the difference between D2 and D3?

I will definitely check into primaryimmune.org.  The more I can understand the better!  Thank you again!

[Red_Star]

My mother has severe GERD and severe LPR due to severely low stomach acid.  Today she doesn't suffer these conditions because she stopped nexium and started betaine HCI with pepsin supplements (for low stomach acid) and digestive enzyme supplements (helps digestion).

Excerpt from Gallbladder Attack - Low Stomach Acid:

"Risk Factors and Causes of Low Stomach Acid

Allergies
Anemia
Adrenal fatigue
Alcohol
Atrophic gastritis
Heartburn
Gerd
IBS
Rheumatoid Arthritis
Hives
Candida and other Yeast
Bacterial Dysbiosis or infections in the Gut
Adult acne
Eczema
Alcohol consumption
H. pylori infection
Stress even in children
Age. HCl production decreases with age

Diseases Associated with Low HCl:

Asthma
Diabetes
Osteoporosis
Arthritis
Hepatitis
Eczema
Acne rosacea
Dry Skin
Psoriasis
Parasites
Gallbladder disease
Herpes
Hives
Hypothyroid
Hyperthyroid
Thyrotoxicosis
Autoimmune disorders
Lupus erythematosus
Myasthenia gravis
Pernicious anemia
Celiac disease
Sjogren's Syndrome"

[elbamom]

So sorry to hear about all of these problems and symptoms. A friend of mine with Meiner's said that magnesium and vitamin D3 helped her. I know D3 supports the immune system and magnesium is a co-factor in helping the body absorb D3. Both are cheap and easy to find at  Costco, Walmart, Walgreens etc.

The next blood work ask your doc for a vitamin panel and see if you are deficient or low in any one vitamin. Most people are deficient in D3. In my family we were 4 for 4 deficient. Your blood level for "optimal" levels of D3 should be between 50 and 70 ml. It takes time to build up the vitamins in your blood levels. It is good to test your D3 levels 2 times a year and adjust your D3 amount accordingly. Dr. Oz and Christine Northrup recommend 5,000 IU daily of D3. For more info on D go to www.vitamindcouncil.org.

Is an internist the right specialist? Maybe an immunologist is the person to look at all these symptoms and see if they are related to some larger problem. If you don't know an immunologist in your area contact the immune deficiency foundation (IDF) at www.primaryimmune.org  They can recommend an immunologist in your area for free and they have lots of other helpful info that may help. They say the auto-immune and immune deficiency are 2 sides of the same coin.

Do you take a Nexium daily? Do you take a pro-biotic? Costco, and other places have an over the counter pro-biotic that is wonderful. It is called VSL#3. It has to be in the fridge so ask for it in the pharmacy. The pro-biotic should help your gut . The digestive system is also very important in helping the immune system.

These ideas should help but not "fix" the bigger issues. Hopefully they will give you some energy to find out what the main health issues are.

Many people in this forum have helpful info and will have other ideas to try.
Hang in there!
Elbamom