In Serious need of help

A am a 40 yr. old female dealing with MANY different issues, and my doctors can not seem to put it together.

My history
Selective IGA deficiency with ANTI IgA antibodies
Ulcerative Colitis
SEVERE Migraines

Grew up with chronic chest infections, usually bronchitis, and chronic sinusitis. That is what we related to the IGA def. At age 36 I had to have a total hysterectomy after several laps for hemmoragic ovarian cysts. Those results showed stage 4 endo and a severe case of Adenomyosis.
During my trying to conceive years, I went through several implantation failures and finally was put on baby asa, and had two children, both preemies.

After my hysterectomy i started hormone replacement, and started have average, run of the mill migraines. These migraines have changed over the last 4 years into debiliting events. The duration of my migraines last from one month to 6 months. Symptoms are strange, regular migraine stuff like arua, nausea, ect, but developed stroke like symptoms with them. My left eye droops, tingeling by left eye and mouth, concentration issues, speech issues, balance problems. These symptoms last for the entire duration of the migraines and sometimes even a few days after the actual headache ends. They suspected Hemicrania Continua, however my trial dose of Indocin did not work.

I deal with joint pain very often, fatigue, and get "blown" veins in my fingers all the time, one of which has left a clot in my finger that can be seen/felt for a few months now. I have become allergic to the sun, and break out in a horrible rash if i am in the sun longer than a 2hr. span. I have red on my face like flushing that covers my cheeks and nose, facialist once said "maybe it's rosashia?  But i have had that for years. The "bib" area of my chest almost always is rashed out also. I have two family memebers who have SLE

My labs are as follows
MTHFR positive for one of each copy
Positive ANA  1:80 speckled
Atypical ANCA 1:160

CT's and MRI's have all been normal, US of neck arteries are good.
Would love to have your opinion on what you think of this history or where i should go from here. I really need answers especially in regards to my debiliting migraines, but would love a general ideal on what you think.

Thank you so much for taking the time.
S

[Nikodicreta]

Hi Miamigirl000.

Look into sub acute cutaneous lupus and get tested for deficiencies.
Your symptoms are for SCLE to a point and then possible deficiencies are causing the balance of the remaining symptoms.
Underlying low grade infection (hiding in the tissues) is also suspect.
Neurotransmitters, Vitamins, Electrolytes, hormonal panel. Tissue minerals
(not blood test), HLA panel. You need all this done. You may need extra
folic acid, B6 and B12 and probably D3 if you need to avoid the sun.
Absorption and assimilation is a likelyissue also.
Look into the GAPS protocol, as it takes too long to explain the connections here. that may have to do also with neurological ,cognitive and
migraine issues.
You may need IV supplementation and or transdermal.
Are you on blood thinners?
If not consider Bromelain1000 gdu- 1capsule500 mg daily
This is an enzyme from the stem of the pineapple which is a great blood thinner, a PH up or down regulator and a great anti-inflammatory!

There may be a restricted glucose supply to the brain.
You can take 2-3 T of extra virgin coconut oil daily in place of pro-inflammatory cooking oils, as it is able to cross the blood brain barrier
and fuel the brain.

Since when did you have the Selective IGA deficiency with ANTI IgA antibodies?

Post again or pm me directly if you need details or to ask questions.

Cheers!
Niko

[miamigirl000]

Hi Niko, thank you so much for your reply. I see my Neuro on the 11th of this month, and will talk to him about all of this. They suggested I see a Rhumy, so I will be making that appt. to.

As for the IgA def, they suspect i contracted it from a blood transfusion when I was a child. I had chronic infections and when we began having issues trying to conceive I went to a hematologist who found it, along with the Anti Iga antibodies. So if it came from the transfusion, I was 6, so 1977.  Having my tonsils removed as an adult helped alot, but with young children it is with out fail that i catch everthing they bring home.  My doctors feel that my UC may be conneccted to that also, since it is a mucus membrane. I also have chronic kidney stones (thankfully small ones).

I also have chronic low potassium, every time it is tested it is low, and sometimes when im in the hospital it is very low (2.5), and they end up putting me on a heart monitor....

As for the migraines, i will start researching the diet you mentioned. Just yesterday i had no headache, but had numbness on the left side of my face. Today I wake up and have a lump on my forehead just above my left eyebrow. This is not uncommon, however I can never get to the doc in time to show it to them. It almost seems fluid filled or somthing, because if you press on it, that will cause the shape of the lump to change.

Thanks again for your response. Can I ask, how do you know so much about all this?
Thanks, Shannon

[Nikodicreta]

Hi Shannon.

Great! The chronic low potassium (hypokalemia) is a more likely cause for your migraine headaches. Very useful information indeed!
I had recommended testing for various deficiencies- including electrolytes and minerals, in my previous reply.

Potassium is absolutely necessary for proper functioning of muscle and nerve cells.
And potassium is both an Electrolyte and Mineral and you  need to
either:
1.
Add potassium rich food items to your diet, like bananas, oranges, beans etc.
2.
Take oral supplements
3.
Intra-venus if you cannot absorb/assimilate enough potassium through #1 & #2.

One of the many possible causes  for low Potassium besides G/I loss
is Hypomagnsaemia-low Magnesium- and if I were you, I would just
do the "Transdermal Magnesium Oil treatment" anyway, daily application for a few weeks and then just do every other day for maintenance.
(Most people are magnesium deficient.)
You can look it up or I can give you the details. Just let me know.

Another possible connection to your low potassium might have to do with
some kidney issue, as the body regulates  potassium levels through
the kidneys, excreting  any excess potassium through  the urine, so if things don't  run well in the kidneys, one may develop hypokalemia.

Low potassium may cause cardiac arrhythmias, so no wonder they put a heart monitor on you at the hospital!


I have studied Holistic Health, Cellular Medicine, Energy Medicine,
Hypnotherapy, and I'm presently looking into doing a program in Naturopathic Medicine.
I'm still not sure if I'm ready to invest all this money and time, since I'm not looking necessarily for a lucrative career at this point of my life and the financial reward is not what motivates me.
It won't be till 2014, if I decide.
My wife worked in the past as a Clinical Dietician and over the years I have learnt a lot about nutrition, biochemistry, supplements, from her.
My daughter took a similar direction, becoming a Holistic health Practitioner, Hypnotherapist and Hypno-Birthing Instructor.

I come from a tradition of natural healers.
I don't really like the expression "healer" as I know it's only the person's own body that does the actual healing. Facilitator is a better term.
So, I'm totally drawn to Natural and Holistic ways of aiding the body overcome any imbalance.

My latest project is finalizing my Fibro-Hypno Wellness Program,
for it has been a work in progress for some time now.
The approach is multi-faceted, using various modalities like
Hypnotherapy, supplements and natural remedies, Energy Psychotherapy,
EFT , Reiki, Meditation using Binaural sounds, Holistic Allergy Elimination
plus general Health Coaching. There's nothing like it out there and it is not limited just to FMS.
Anyway enough blabbing about my stuff!
This is supposed to be about you.
There are numerous things you can do to improve your health.
Please stick around for a while.

Your lump on your forehead could be a lipoma, a benign cyst, a calcium growth or bone growth (least likely).  Removable by day surgery, if it doesn't dissipate on its own after a while (sinus related)
If it were on my forehead, I would use a 10% DMSO solution, as DMSO is an extremely effective  lipid solvent,intra-cellular  driver, anti-oxidant
and analgesic agent. Please do not consider using this, as it is not FDA approved and if instructions are not followed precisely, it could be potentially dangerous. PM me for details.
Cheers!
Niko

[elbamom]

Dear maimigirl:
Niko's ideas are very specific, to add just another idea, I would recommend contacting the IDF. Having a IGA deficiency puts you in the immune deficiency area instead of auto-immune.

Their web-site is primaryimmune.org Lots of free info there and great people to talk to. They can recommend an immunologist in your area who knows about immune deficiencies.  They will send free info.There are some immune deficiencies that can be treated, and some that can't. I think there are 185 different kinds they know of at this time. They have local and national meetings also that are very helpful. People can discover they have an immune deficiency at any age. Most people go years with the wrong or an unknown diagnosis. There are many paths to the answers for you. Find out what works for you and keep doing it!

Good luck,
elbamom

[BOK2Bjan]

A quick note.  Unfortunately, having an immune deficiency doesn't rule out autoimmune disease.  I have managed to have both, and am getting multiple infusions of IgG - it's often used for two of my conditions - type 1 Diabetes, and MS.

Blessings - the ideas above are great.  Jan

[panda2526]

Having had a hysterectomy leaves one vulnerable to the build-up of toxic iron in the body...as iron builds in the body it is stored in joints, tissues and organs. Many of the symptoms you describe can be associated with iron overload, which can be caused by many factors, but is usually genetic. 1 in 9 people of European descent are carriers of a mutated gene responsible for iron absorption. 1 in 200-250 people will develop iron overload. Many drs miss this diagnosis, especially in women and in the early stages. It is the most common genetic disorder found among people of European descent and the most often misdiagnosed or not diagnosed until late stages of the organ damage. Joint pain like arthritis pain is one of the earliest signs, as are headaches, gastro-intestinal disorders (hemochromatosis is a gastro-intestinal disorder, not a blood disorder), diabetes, and is often misdiagnosed as Fibromyalgia due to it's ability to compromise the immune system. Excess iron is toxic and encourages free radical activity leading to cancers and disease.

I would recommend along with the other suggestions here to get your iron levels checked...not just the regular routine CBC's as drs usually run, but the FERRITIN, TRANSFERRIN SATURATION %, TIBC AND SERUM IRON. Only these tests will show the true iron STORAGE in your body.

It is a good thing to rule it out. I have family members recently being diagnosed with this and it took many years for the drs to finally diagnose the situation accurately, but is a simple set of tests.

MS is also on the list of things that iron has been a known factor in causing and diabetes is a common and end stage result of having iron overload.

Take care, C

[panda2526]

Having had a hysterectomy leaves one vulnerable to the build-up of toxic iron in the body...as iron builds in the body it is stored in joints, tissues and organs. Many of the symptoms you describe can be associated with iron overload, which can be caused by many factors, but is usually genetic. 1 in 9 people of European descent are carriers of a mutated gene responsible for iron absorption. 1 in 200-250 people will develop iron overload. Many drs miss this diagnosis, especially in women and in the early stages. It is the most common genetic disorder found among people of European descent .  Excess iron is toxic and encourages free radical activity leading to cancers and disease.

I would recommend along with the other suggestions here to get your iron levels checked...not just the regular routine CBC's as drs usually run, but the FERRITIN, TRANSFERRIN SATURATION %, TIBC AND SERUM IRON. Only these tests will show the true iron STORAGE in your body.

MS is also on the list of things that iron has been a known factor in causing and diabetes is a common and end stage result of having iron overload.

Take care, C

[panda2526]

Sorry, only pushed it once, and then edited it to make it shorter and it loaded all of them...!

Kept telling me the page was not available and to try again later...never saw that one before...

C

[BOK2Bjan]

That's interesting.  Unfortunately, it doesn't apply to enough women that doctors would look for iron over-load.  To give you the opposite side of that picture -

I have had an immune deficiency for a long time - how long - not known, but perhaps since birth.  I have a family history of autoimmune disease and I personally have developed multiple autoimmune diseases.  I have also always had low iron levels, but after going through early menopause due to the use of chemo drugs, I became severely anemic to the point of needing multiple transfusions on multiple occasions.  I was found to have extremely low iron levels.  My last hospitalization, a few months ago, I had a hemoglobin level of 7.8.  I also have frequent low potassium levels and very low D levels, high parathyroid, low thyroid.  I guess I'm saying - you just never know.  Don't assume anything.  Get as many labs as possible and do as much holistically as possible and seek supplements and/or medication as needed after that.

Hope you find your answers.  Always keep in mind - each specialist can tend to have their own prejudice and blindness.  I've had many misdiagnose me and think the craziest things.  Multi-system disorders are hard to diagnose and hard to treat.  Stay patient (hard) and tenacious.

Blessings, Jan.

[Nikodicreta]

Hey Jan.  You are a true gem!
Your positive Karmic Energy is just shining in on all of us!
And this while going through your multiple conditions.
Illness represents a rare and final opportunity for true evolution.
You're getting there!

Here's what I sent to another member recently that could apply to you perhaps and to Shannon:

"Also consider being tested for Hypothyroid type 2, as standard blood tests may not  indicate this.
Type 2 hypothyroidism or thyroid hormone resistance is caused by an intracellular calcium/potassium imbalance in all the cells of the body, caused by  too much calcium and  too little potassium inside these cells, neutralizing the effects of the thyroid hormones that are produced and making them ineffective in governing our bodies' metabolic functions.
Correcting the mineral imbalance and carefully monitored thyroid hormone
supplementation -until balance is restored- should suffice to remedy this,
should it be the case of thyroid 2.
I would suggest seeing a knowledgeable Endo to have this checked."


You are so right about multi-system disorders (systemic diseases?), but I'm getting closer to understanding better, A/I and systemic diseases.

Should you need more details on anything, let me know.

Many Blessings,
Niko

[panda2526]

There are many genetic disorders in which a person can be anemic AND iron loading at the same time. And I disagree that women are less likely to have a problem with iron than men, although they are protected from iron overload while still menstruating. However, once a women stops by natural menopause or through hysterectomy, that natural de-ironing process stops, speeding up the iron loading process.

Iron in excess IS at the root and base of MANY auto-immune and systemic disease and disorder...iron is toxic, and drs are missing this very real and very common problem. Excess iron acts as free radical in body upon which viruses, infections, and cancers thrive and flourish. Damage done by excess iron even in small amounts can be very severe.

And hemoglobin on it's own is not an accurate indication of being anemic, and iron deficiency and anemia are two different things unless a person is diagnosed as "iron deficient anemic". And that involves more than taking a CBC count. It involves the entire iron panel, of which I listed above, which is the only way to assess the true iron storage in the body, which is different than the hemoglobin.

Genetic mutations continue to be discovered to go along with the ones they already know of to do with how the body stores iron. And drs can and do miss diagnosis of iron overload by assuming a person is iron deficient if they have low hemoglobin or red blood cells. Anemia always has a cause and if they do not accurately assess the cause they are not treating it appropriately.

This is readily available information by punching in hemochromatosis, or iron overload, or anemia, or too much iron, or iron deficient anemia, and researching the many many disorders and diseases iron is directly related and co-factor in. There is an article entitled Iron Toxicity from the National Institute of Health that outlines all of this information to do with excess iron and it's affect on us.

Thyroid, adrenals and pituitary glands are all glands affected and damaged by excess iron. Liver, joints, heart and pancreas are all affected even more. Brain loads iron and causes neurodegenerative disorder. If there were ever a disorder that can be treated without drugs and meds and in a "natural" way, this is it. The potential for disease PREVENTION with relation to iron is staggering.

Because it is a genetic disorder in most cases of iron overload (but iron overload can be acquired as a secondary condition to blood transfusions and iron supplementation) women are affected equally as men however because women have menstruation they are protected early in life from the effects of iron loading, until later in life, when they are diagnosed 10-15 years later than men, usually after menopause (or hysterectomy). Depending on the gene they inherit either one or two also affects severity as well as other underlying conditions and disease.

Take care. C

[miamigirl000]

Thank you all for your very informative posts! I see my neuro today and plan on talking about a lot of the ideas here! I have also made an appt. with a Rhumy but it is a few months away.....I am so greatful for stumbling upon this site. ALL of you are such a wonderful wealth of information! Good luck to all of you who are still on you journey to diagnosis!