Re: 21 yr old daughter flare up after 1 yr & now Hep.A ??

[Guest guest]

Well, if there was a cure for it, it would make the papers. That is not to say

that some people go into medicated remission and even full remission with the

disease.

My daughter is 21. She has been on many medications to control her disease. And

we have tried a naturopath and acupuncture.

Lisinopril is a blood pressure med. Why is your daughter on that? Has she tried

any of the biologicals yet? Kineret or actemra? Many people are having success

with those.

Our daughter is doing very well on mtx. She is not perfect, but pretty darn

good. She goes to college full time and works at an internship. I hope your

daughter turns the corner quickly.

Sent from my iPhone

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[Guest guest]

Hello my name is P. from Corpus Christi, Tx. I was diagnosed when I was

21 and I am now 28. It has been a rough road and have been too on so many

medications it is crazy. I started off with a high dose of prednisone because I

went undiagnosed for a year and a half and was in horrible shape. Once I went on

prednisone I gained soo much weight and my mood swings were horrible. Then

remicade was added which worked for about 6 months. Then I went to prednisone

and methrotrexate, which helped but gave me so many infections that they took me

off and my hair was falling out. Then on to self injections which were even

worse. Made me swell up and didn't have much effect on the disease. Then onto

Rituxan which is an iv medication, after that my veins began to scar up and I

had to get a med port put in my chest so they could draw blood more often and be

able to use iv medications whenever. It helps me out a lot because I don't have

to get poked over and over again to find a vein.

Now I am having problems with my ovaries and am waiting for my surgery but can't

get it until I get my blood sugar under control and get my abnormal ekg looked

at. If it doesn't rain it pours on me whenever I try to get things fixed.

I also have an inflamed liver. I had a biopsy done three months ago and it

showed that it is fatty. They can't do anything for it. But that place where it

is located at can be tender to the touch at times.

I am also a college student going through a medical program, so whenever I

stress out it doesn't help my body either.

Well I hope things get better and please keep the group in touch about what is

going on.

Hugs and blessings,

P

Corpus Christi, Tx

[Guest guest]

So sorry about your daughter. If I had the cure I would certainly use it

myself. Have been lots of meds, but even those just make things a mite better.

Still hoping.

Regards to Heptitis A - Interestingly enough, in large urban environments an

extremely high percentage of adults have had Hepatitis A. So, most of the cases

are either sub clinical or just appear as if it were just a case case of a

stomach bug. There are 2 tests for Hep A. The first just says if you either

had it or currently have it. Then usually they follow up with a test that just

sees if you have IGM antibodies. The presence of IGM anatibodies to Hepatitis A

is indicative of a current or recent disease. Current or recent is based on the

clinical impressions of the patient by the doctor. That could be the difference

in the 2 tests on your daughter.

I know exactly when I had Hep A becuase in my old job we were tested for viral

hepatitis. From 1 year to the next I had a real bad what appeared to be

gastrointestinal bug. (I will not go into the symptoms, yuck!) I could pull my

old notes from a presentation I gave on viral hepatitis in a past life to find

the postitive rates, but so long ago they probably have changed.

Uncle Fuzzy

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> One test says she now has Hepatitis A and another says not.. WTH?!

[Guest guest]

Hi, I'm Caroline.

I have successfully used Western Medication along with Chinese medicine

therapies to keep me going. I am NOT cured but I was able to semi function.

I'm a little confused about the lisinopril injections. Lisinopril is an ACE

inhibitor for high blood pressure. Does she have that? I'm new to reading the

board again so I may have missed that information. For my heart issues my

doctors have me taking the herbal formulation called Hawthorne. Check with your

doctors to see if that is safe for your daughter.

For the liver enzymes being elevated, my doctors put me on an herb called Milk

Thistle. It helps detox the liver and bring your enzyme levels back down. Do

some research on it. Ask the doctor and see what they say.

Look for a TCM or Traditional Chinese Medicine doctor in your area. Look under

acupuncture. Call and ask if they prepare bulk herbs and powders. If they only

have pills, keep looking. The pills only doctors are great doctors but not the

kind you want. The ones that do bulk herbs and powders can make a formula

specific for your needs and I find that VERY helpful. I don't have to fit into a

cookie cutter profile to take the pre dosed pills. Check with your physicians to

see how they feel about alternative medicine and would they be willing to let

you use both in an attempt to feel better.

One last thought. ALWAYS read the side effects of what a drug may do to you.

When I took Lisinopril, it affected my lungs. I started out with mild asthmatic

issues that increased until I could not stop caughing over a month or two and

breathing was difficult. I have LOTS of bad reactions to drugs so I always have

to check to see what it will do to me.In the case of the Lovaza (Omega3 for

cholesterol) the reactions I was having had nothing to do with the drugs

specific side effects. I took the stupid drug, knowing it was making me sick for

2 months... trying to get used to it. Come to find out, the reactions I was

having was to my shellfish allergy. Not supposed to take Lovaza if you are

allergic to sheelfish but that's not listed under side effects.

READ what the drug could do to you and watch for that, even if you have taken

the medication a long time and start reactions later. I've done that too. YOU

are your BEST ADVOCATE in your healthcare. It's your body, your life... be an

active particpant is getting the care you want and need. You have the right to

ask for a different drug if the one you were given does not help you or makes

you sick. You have the right to seek alternative health care but don't burn

bridges. You may need to go back to your allopathic (western medicine) doctor

for help if the alternate care does not help you. Good communication about your

needs, feelings and concerns with ALL doctors you see is VITAL.

Hope your daughter feel better soon. Smiles, Empress of CUS, Caroline 1

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> Frustrated. There just has to be a way to CURE this! Traditional/Western

medicine is only putting a " band-aid " on the symptoms