I was recently doing some research on my health problems and ran across this forum. It seems many other people have had the same problems as me and I was hoping someone would have some good advice and/or suggestions.
I am 27 years old, and have been having these problems for several years. When I was 15 I started having severe stomach problems. I couldn't keep any food down,and lost weight rapidly. I was too afraid to go to a GI so my GP did all he could for me. He took me off caffine, my acne meds, and the severe stomach cramps seemed to subside. It would come back and flare up from time to time, and he thought it was caused by stress. Eventually he put me on a med to control stomach, intestinal and colon spasms which helped me keep my food down. And an anti nausea med.
Through the years these symptoms got worse. And my GP, died and since then I've not found much help. I get stabbing stomach pains that have me doubled over in pain and crying. Violent diarea, sores in my mouth, acid reflux, indigestion, and vomitting. My GP had finally talked me into seeing a GI before he died. The GI dr informed me that he thought I had Crohn's (which a cousin has) and did an upper GI scope, which he said came back fine. So he then did a lower GI, which he also said came back fine. After spending over $2000 per test, he said he wanted me to swallow a pill with a camera inside so they could see what is going on. When I asked him why, he said they were looking for Crohn's. When I mentioned that this was what he thought I had on my first visit, then what were the other 2 tests for? He told me he had to rule out other things first. Now in my humble opinion...you should test for what you think it is, and then go from there. Not the opposite. Needless to say I refused to pay thousands for another test and never went back!
On top of this I have severe fatigue for the past 3 to 4 years. My Mom, Sister and I all went to see an internest who was supposed to be amazing and has recieved countless medical awards. She found I had MONO and helped me get on FMLA. 2 years later and my fatigue is the same if not worse. She diagnosed me with very low ATP levels and put me on weekly injections. Despite injections my numbers dropped even more instead of going up. So my shots were doubled. My ATP levels never improved, only stayed the same. On my last visit I cried, and told her I went from a tired 24 year old on my first visit who worked full time, to a sick 27 year old who had to quit her job and live at home. She then told me "okay well we'll switch to ATP pills, they are cheaper" and left the room.
On top of that in the past year I've developed bad migraine's that last for days to an entire week. I never seem to go a week without getting at least one migraine if not more. I've developed really bad joint pain in my knees, occasionally my wrists and elbows but primarily my knees. It's usually brought on by rain or cold weather. I always test negative for arthritus so nothing has been done. I often feel dizzy, and off balance. Especially when I go from a sitting to standing postion, or laying down to sitting up. My feet are always cold, and turn blue. This has always happened since I was a little girl! This is weird but...I am very sensitive to cold. I try not to leave the house durring the winter unless I have to. Typically even with a coat, after 5 minutes the cold chill sets into my bones and I start vomiting. For some reason everytime I get cold I vomit. And it takes me hours to warm up.
Almost 2 years ago now, I was having problems with my menstrul cycle. I had a cycle every week for 4 months. I finally went to see a doctor, who found my testosterone was high (even by a man's standards) and my DHEA was 4 times what it should be. I was sent to a specalist and diagnosed with PCOS. They also found my vitamin D levels were extremely low and I was given a prescription. Despite the prescription my vitamin D levels have actually decreased. Not sure how long I had PCOS before it was diagnosed. Dr.'s always checked my thyroid and deemed it normal, but it wasn't until I saw a PA that my PCOS and Vitamin D deficiency was found.
I also suffer from anxiety, high blood pressure ( which appeared around the time that my PCOS was discovered) and hair loss. I've quit driving at night because I am really sensative to the light from oncoming traffic and am nearly blinded by it. When lights from oncoming traffic hits me, I literally can't see until it passes. I have frequent and terrible bouts of nausea. My fatigue has only worsened and I don't know what else to do!
My mom and sister have both tested posative for autoimmune but I never have. My sister was diagnosed with a kidney disease at age 6 and my Mom has countless auto immune problems. Doctors have never been able to figure out what is wrong. ANd I am very frustrated! Recently I am having lots of probelms with my short term memory, and forgetting what I am saying halfway through a sentence. I've applied for disability but since I've only been diagnosed with PCOS and anxiety nothing came of it.
The only things that have shown up in my labs are low vitamin d (despite prescription) low atp (despite prescription) , high testosterone and dhea ( which resulted in a PCOS diagnosis) high c reactor proteins ( which tells them I have inflamation but they have never figured out where or why (This has shown up for 2 years now) I test negative for lyme, auto immune, arthritus ( despite my pain) and IBS (despite my symptoms). I am on a gluten free diet which has helped immenssely but is not a cure all.
If anyone has suggestions I would really appreciate it!!! I am looking into going to a new internest but would like to know what to ask him about and what tests to run. I'm at my wits end! At this point, I don't expect a cure all, I'd just like to know what is wrong with me so I can maintain some sort of qaulity of life.
I'm so sorry to read about all these health issues that you're having.
Look into the following for answers:
Leaky Gut Syndrome, Gut Dysbiosis, Candida, SCD (The Specific Carbohydrate Diet) and GAPS (Gut and Psychology Syndrome).
After you research all these, you may post again with your questions and comments, or you may send me a message directly.
I noticed I have a butterfly rash on my cheeks and also on my forehead. It does not itch but hasn't gone away for a month now. It's not dry or flaky. Just bright red and annoying. Wondering if this could be a sign of lupus or something else? Any thoughts?
Niko, would know alot about lupus too. I would say that is a possibility. Have you had any blood work done. Lupus can cause many problems. Bloodwork is one of the first things they would do. It would be an ANA test. If that comes up positive with a 1:160 tither or higher then there is a highly possibility.
I wish I knew more. But I only did a bit of research on Lupus. There are many great resources if you google Lupus. Good luck and I am praying for you.
I'm no Lupus expert, however, I do know a bit.
The butterfly rash is in combination with your symptoms is NOT
enough to get diagnosed with lupus!
The diagnosis is very difficult.
Here's the diagnostic criteria (source: Medscape)
"1. Malar rash Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds
2. Discoid rash Erythematous raised patches with adherent keratotic scaling and follicular plugging (Atrophic scarring may occur in older lesions)
3. Photosensitivity Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation
4. Oral ulcers Oral or nasopharyngeal ulceration, usually painless, observed by a physician
5. Arthritis Nonerosive arthritis involving ≥2 peripheral joints, characterized by tenderness, swelling, or effusion
6. Serositis (A) Pleuritis: Convincing history of pleuritic pain or rub heard by a physician or evidence of pleural effusion
(B) Pericarditis: Documented by ECG or rub or evidence of pericardial effusion
7. Renal disorder (A) Persistent proteinuria >0.5 g/d or >3+ if quantitation not performed
(B) Cellular casts: May be red blood cell, hemoglobin, granular, tubular, or mixed
8. Neurologic disorder (A) Seizures: In the absence of offending drugs or known metabolic derangements (eg, uremia, ketoacidosis, electrolyte imbalance)
(B) Psychosis: In the absence of offending drugs or known metabolic derangements (eg, uremia, ketoacidosis, electrolyte imbalance)
9. Hematologic disorder (A) Hemolytic anemia: With reticulocytosis
(B) Leukopenia: < 4000/mm3 total on ≥2 occasions
(C) Lymphopenia: < 1500/mm3 on ≥2 occasions
(D) Thrombocytopenia: < 100,000/mm3 in the absence of offending drugs
10. Immunologic disorder (A) Anti-DNA: Antibody to native DNA in abnormal titer
(B) Anti-Sm: Presence of antibody to Sm nuclear antigen
(C) Positive finding of antiphospholipid antibodies based on (1) an abnormal serum level of IgG or IgM anticardiolipin antibodies, (2) a positive test result for lupus anticoagulant using a standard method, or (3) a false-positive serologic test for syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilization or fluorescent treponemal antibody absorption tests
11. Antinuclear antibody An abnormal titer of antinuclear antibody by immunofluorescence or an equivalent assay at any point in time and in the absence of drugs known to be associated with drug-induced lupus syndrome.
SLE can be diagnosed if any 4 or more of the 11 criteria are present, serially or simultaneously, during any interval of observation."
Lupus episodes, or flares, are usually noted by a worsening of some of the following symptoms (source: medical news today)
Achy joints (arthralgia), arthritis, and swollen joints, especially in wrists, small joints of the hands, elbows, knees, and ankles
Swelling of the hands and feet due to kidney problems
Fever of more than 100 degrees F (38 degrees C)
Prolonged or extreme fatigue
Skin lesions or rashes, especially on the arms, hands, face, neck, or back
Butterfly-shaped rash (malar rash) across the cheeks and nose
Anemia (oxygen carrying deficiency of red blood cells)
Pain in the chest on deep breathing or shortness of breath
Sun or light sensitivity (photosensitivity)
Hair loss or alopecia
Abnormal blood clotting problems
Raynaud's phenomenon: fingers turn white and/or blue or red in the cold
Mouth or nose ulcers
Weight loss or gain
Anxiety, depression, headaches, and memory loss.
As a believer in the "Impossible", having defied the odds
a few times in my own life, having seen and experienced
numerous so-called "miracles", I will take the liberty to state
that NOTHING is "incurable"!
So when you read or hear that there's no cure for a particular condition,
be it lupus or other so-called autoimmune diseases, this is only in strict medical terms.
So the more accurate way to express this would be "no medical cure".
Medical cure in itself is controversial, as when the treatment involves
drugs, there's not a single drug that has ever cured anything at all!
If it wasn't for the intelligent immune system's ability to take care of our bodies and fight off disease, just with prescribed medicine, we would be all dead, when faced with serious disease!
While the molecular approach to disease is important (this includes
natural remedies and supplements besides prescription drugs), since it may help biochemically or nutritionally to correct impairment or imbalances, it only constitutes a small part of the energy matrix,
meanwhile the larger part, necessary for return to complete balance and health,is usually ignored.
Your Thoughts (yes your Thoughts!), your Beliefs, your Mental Attitude,
your Emotions and your Spirit play a huge role, in your Health and in your Life in general.
Prayer and Meditation ( Talking to God & and Listening to God) are
wonderful empowering ways to help you rise well above the level of your symptoms and experience the Power of your Spirit (which in turn connects with the Power of the Creator)
Truly, if I had a sure way to convey this concept to you or anyone else
who is suffering from serious conditions, it would honestly bring amazing results, beyond most people's wildest expectations!
But I can't, as this requires YOUR leap of faith and direct active involvement, in addition to letting go of any limiting beliefs and doubt, in order for it to work.
My role in Healing, has always been one of Teaching and Facilitating,
understanding and respecting the fact that "Healing comes from Within".
I hope all this makes some sense and if you need details on anything I'm just a couple clicks away.
You're in my prayers as well. (Kimberly, is an Angel! isn't she?)
well....not much of an update sadly. Other than I began to have severe scaley dandruff on my scalp, AGAIN! Which spread to my forehead. My lips are extremely dry and have been peeling and flaking for over a month,a nd now the palms of my hands are as well. I went to the dermatologist and was diagnosed with psoriasis.
Last month the chronic fatigue became worse. I woke up one day with what I thought was a swollen thyroid. The next day I had a pain at the base of my skull and the following day the back of my neck was hurting, and was filled with fluid. Lab work showed normal thyroid function as well as normal white and red cell counts. Howver, an ultrasound on my thyroid showed there is a nodule on my thyroid. But there has been no further testing etc.
Two things in relation to what's going on with you.
One, I have done a study on psoriasis and I have put together a feasible
Naturopathic protocol that not only compares to the newest treatment
with Stellara injections at a cost of $20,000.00 plus annually (very costly),
but is also much safer than "Biologics" (that's the class of drugs Stellara belongs to) which are still Immuno-suppressive, even if they are promoted as immuno-modulators.
I can send you my report if you're interested, in a pm.
It is all supported by existing research and published studies.
This will work well in conjunction with addressing the imbalances
and issues I had mentioned in my original post, to eliminate the root causes.
So please let me know if you did pursue anything.
This is delicate work and you will experience results, if you pay attention to detail and follow through.
Two, the nodule on your thyroid, should be further investigated if you have normal or elevated TSH levels, and normal seems to be the case here,
as you mentioned the lab work indicated normal thyroid function.
A very fine needle biopsy can be performed, fairly easily, to determine if it's benign (90-95%) or or malignant (5-10%).
Were there any details given to you after the ultrasound test?
Please send me a pm or post again soon.
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