Please Advise, Desparate!

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Shaken
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/3/2010 11:31 PM (GMT -7)   
I had complete blood work done a few months ago and the results are summed up below:

Low glucose level, high triglycerides, iron overload (very high), high hgb, hct, rbc, mch, rdw, & neutrophils, low lymphocytes & absolute lymphocytes (doc noted that was an ominous sign), high protein & globulin, low potassium & carbon dioxide.

I didn't understand it. She asked me what my symptoms were. I told her headaches, I showed her 2 patches of hair that had fallen out, told her I had Lattice Degeneration, felt feverish a lot of days, told her that I don't communicate well (ADHD), bruised easily, told her I have a terrible memory, clumsy, depressed sometimes & that I lost weight without changing my diet (I had a baby 6 months ago and i weigh less than i did before I had him)...etc.

Took 2 more tests after that (on separate occasions) but doc didn't say what they were for, just sent them with my dad to give to me. He claimed he didn't know what they were for either. I asked the nurse the 2nd time what they were testing for and she said Lupus. I had heard of it through America's Next Top Model but didn't know exactly what it was. I got home and researched. When I read the symptoms, I could relate to almost all of them. I was so scared. I cried a lot. After a couple of weeks the doc called me in to discuss the results. She told me I had Lupus. I asked her if she could be mistaken and she said, "I tested you twice."

I had a positive ANA with a speckled pattern. She said I have ulcerative colitis and my body is attacking my liver as well. She also said I had Celiac disease, anemia & hypoglycemia, among a number of vitamin deficiencies and that I didn't produce enough stomach acid. She said so many things and I didn't take it all in. I'm only 24. I asked her what she suggests (referring to treatment options) and she said I could go the hard core drug route or the natural route but if I were her daughter, she would want me to treat it the natural way. (She is a holistic doc.)

(My family has a history of different autoimmune diseases. My brother has MS, my cousin had some heart thing & died in his late 20s, his mom, my aunt, had ulcerative colitis and had part of her colon removed & is now dying of primary biliary cirrhosis, my other aunt died of primary biliary cirrhosis, her son (cousin) is schizophrenic (he killed someone a couple of years ago and before that he bit someone's thumb off in a fight), I have family members on both sides who have committed suicide including cousins and one grandma...the list goes on)

I'm taking Vitamin B12 (under my tongue) 3 times a day, GlutenFlam, Vitamin D once a day & X-FLM 3 times a day for my immune system. She told me to try this for 6 months and then re-take the tests.

I currently have a bmi of 16.4. My weight concerns me and I feel so ill. My abdomen is very swollen and It is very tender to the touch. My body is sore - especially my ribs & colon region. My stomach feels like it's burning sometimes. I always get out of breath, I get heart palpitations sometimes, I can't stay awake unless I take adderall. It's hard for me to hold my son because I am so weak and tender/sore. I'm scared. I don't know if I'm doing the right thing. I don't have anyone to talk to. Has anyone else taken this natural route before? confused confused

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 1/4/2010 8:46 AM (GMT -7)   
Hi Shaken and welcome aboard. I too have Lupus and I am fairly new to it, a little over a year. I am under the care of a rheumatologist and currently on Placquenel. I don't get over to this forum very often but saw your post and wanted to respond. I am sure the other will be on soon to help you out as well.

It's your choice how you want to handle your medical situation but in all honesty with a small baby to take care of I would be wanting to get myself feeling better the fastest way possible. It takes a tremendous amount of energy to care for a baby and I am not sure how you are managing considering everything that is going on.

A couple of things that stood out with me is you mentioned you have ulcerative colitis. Are you on any medication for it. The soreness you speak of with your stomach could be coming from that. I don't know how much you know about UC but it is not something to play around with. You really should be under the care of a gastroenterologist for this condition. I also noticed you have a very high iron level. My daughter does too, and as a result she has a condition called hemachromotosis, not sure I spelled that correctly, I always misspell it. It is also called the iron man's disease because it is caused by iron overload and men get it more than women. My daughter was diagnosed with this condition several years ago and has had it for a long time and was not aware of it. Again, a gastroenterologist treats this condition. This is a very serious disease with many, many potential complications. You need to be tested to find out if you have it and which kind. It can be passed on to your children. I had the dna testing done and I am a carrier meaning, this is how my daughter got this disease. She now has arthritis, diabetes, early fibrosis of the liver and she is young. It can affect so many other vital organ such has the heart.

I do hope you start feeling better soon. You are too young to be this sick with a little one to care for. I hope you will seek some help.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/4/2010 9:58 AM (GMT -7)   
In my opinion, you need to run, not walk to the nearest rheumatologist and gastroenterologist. You might even consider a trip to your local emergency room!  With a swollen/tender abdomen and a diagnosis of uc, this is very serious.  My brother has crohn's/ulcerative colitis and I have lupus. We also have a very extensive family history of autoimmune diseases.

I am not a doctor, but it sounds like you are deteriorating quickly. You need some aggressive help. Please, at least get a second opinion. When my brother was in your condition he was profoundly malnourished, hypovolemic and severely anemic requiring major transfusion and nutritional support.

Again, this is ONLY MY OPINION but I feel STRONGLY that you are acutely ill and need aggressive treatment!

I'm sorry you are dealing with this, with a brand new baby, no less! I wish you the best! Take care of yourself, your baby needs you. Judy

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/4/2010 5:40 PM (GMT -7)   
I totally agree with Judy, you need to find a rheumy and gastro doc quick!

I too have Celiac, after losing 40lbs in 2 months I was finally dx a year later (in Sept 2003) and immediately started a gluten free diet. I felt a little better, mainly my abdominal pain was gone but I continued to suffer with diarrhea, cramps, nausea, etc Finally in May 2005 after losing another 20lbs without trying (I was down to 118, I'm 5'6" and haven't weighed that since high school) my 3rd rheumy dx me with lupus on my 2nd visit and started me on Imuran, the diarrhea stopped immediately and I put some weight back on. Lupus attacks my GI tract and when I flare it acts up, I have to watch what I eat, can't have too many raw veggies, etc.. it's too rough for me but with the help of the meds my diet is better that what it was before my dx. I take many meds to manage lupus but if I didn't I would not be able to function. Before my dx I remember I would only be able to run one errand a day then I would come home and take a 2 hour nap. My quality of life was not good. I still have to watch what I do because if I over do it, I pay the price but thankfully after almost 6 years of this I am more in tune with my body and tend to pay closer attention.

I am so sorry you have to deal with all this at a young age. Please keep us posted on how you are doing and let me know if I can answer any more questions for you. Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 1/5/2010 7:54 AM (GMT -7)   
I agree with everyone...Try to get to a rhuemy quick so they can get things controlled!!!

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 1/5/2010 12:20 PM (GMT -7)   
Please go to a Rheum... and Gastro Dr.... please....

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/5/2010 2:11 PM (GMT -7)   
A rheumetologist and gastroentronologist are top in your need to find list. I would advise you to go the medication route instead of the natural route as you seem to be very ill. I am sorry but with lupus naturals came only go so far. With a baby to care for you need your illnesses controlled as quickly as possible. Just so you know I am not a medical professional I am just speaking from experience.


Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Shaken
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/10/2010 5:08 PM (GMT -7)   
Thanks for the replies. This feels like the only place i can get real answers. I have been so depressed and weak... lost more weight too. I'm 5'7 & down to 100lbs. I'm going to have to stop feeling sorry for myself and take action.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/10/2010 5:20 PM (GMT -7)   
Hi Shaken,

Yup, I'm with the others on this. You need immediate treatment and close monitoring by a rheumatologist. This is my opinion only, but if it were me, I'd skip the holistic route and get treated properly with medication. There's no time to fiddle around with this. The longer you leave this, the worse you'll get. Conventional medicine is the route to go with. Again, just my opinion. Once you get on medication, you'll probably see your vitamin definiencies get better, anemia will go away, and you won't be as sore and fatigued.

Please keep us posted on how you're doing okay?

Blessings,
Ginny

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/10/2010 5:26 PM (GMT -7)   
Shaken, everyone has given you GREAT advice! BTW, a bmi of 16.4 and a swollen abdomen are classic symptoms of celiac disease. I hope that you have started the gluten free diet! That should help you begin to feel better as you look for doctors ASAP (rheumatologist and gastroenterologist).

Here is a great primer on exactly how to go gluten free:

glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

HealingWell is a great place to come and ask questions or even just to vent.....there are so many helpful, knowledgeable people in these forums!

I do hope you feel better soon!
(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 1/10/2010 7:09:13 PM (GMT-7)


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/10/2010 5:29 PM (GMT -7)   
P.S. You may also need to find a hepatologist to help you check out your liver issues and the iron overload....you may have hemochromatosis, although you sound a bit young for the symptoms to be so severe.

Good luck!
(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Shaken
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/13/2010 10:57 AM (GMT -7)   
You guys are really sweet and supportive. I really appreciate that! I've been eating gluten free and taking my vitamins. I'm feeling better than I did before and I've been eating a lot more and really cutting back on my stress. I think stress is the number one thing that has been feeding this flare. I scheduled an appointment with a rheumatologist on February 10th :) and I'm very hopeful. nasalady: there's another great website for eating out gluten free that I found yesterday: http://www.glutenfreeregistry.com/gluten-free-state-search.do?state=TX

Sleep is really another factor that is helping me out. It's hard to sleep when you feel these weird things going on in your body. I can't explain it to other people but you guys would know what I mean... It feels like bolts of warm lightning piercing my liver and then, like clockwork, inside my stomach. My gallbladder feels heated too. I've always felt weird things going on in my stomach and I described it before as an uncomfortable heat all throughout my stomach. I was told by my husband not to worry, that it was normal. It's weird how it has now progressed to the "lightning" sensations. It's as if I can feel my body attacking itself. I try not to think about it but I can't help but say to myself, "What the hell are you doing to yourself?!" It's hard to fathom.

One thing that I mentioned that didn't get addressed (by the holistic doc) was the cramping I feel in my heart occasionally. I hate that. I'll ask the rheumatologist in Feb but maybe you guys could help me out. That's probably from the vitamin deficiencies, right?

Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 329
   Posted 1/13/2010 1:20 PM (GMT -7)   
Wow this is familiar to me too....I have Ulcerative colitis too and have just been tested positive for Lupus...get to your gastro team asap regarding the UC its not something you want to leave without treatment.

My mother has immune system problems too and ........says the same thing ............"It's as if I can feel my body attacking itself"
38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
4 x Asacol
100mg Mercaptopurine (6MP)
Doxycycline
Currently on a drug trial for Vedolizimab
Currently waiting on Lupus diagnosis (after drug reaction)

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