Jen, UK

[Guest guest]

Hi Jen!

Well, of all the co-incidences! I am a part-time MA student, (hopeing to be

" relegated " to PG Dip on health grounds), of......the University of Leeds!!!

I've always lived here except for a couple of months in Germany and 10

months studying Mandarin in Taiwan!=) Who knows, maybe I've met your

fiance.....=)

Tell me your CFS experiences, I'd like to know. Have you found anything

useful in your dealing with it, say diet or some other natural therapy?

Love and mangoes

Elisabeth

[Guest guest]

Hello Elisabeth,

Interesting you ended that email with " love and mangoes " . I noticed you do

add some type of fruit to your endings, but I particularly love mangoes.

I can't believe your in Leeds! What a coincidence. I don't think you would

have met my fiance yet as he just got there. He's studying law.

So did you become fluent studying Mandarin for ten months in Taiwan? I've

heard it's a difficult language but I'm really tempted to try learning it

since my fiance and his family speak it and about a third of the people I

work with speak it.

Here's my CFS experience:

From November of 2000 through December 2001 I had been sick, what I thought

was frequently at the time. About every other month. Although there was

one month I was sick for three weeks straight. I had repeated respiratory

and throat infections. In November 2001 I also ended up in the ER twice

with really bad UTI infections that came on very quickly. Yes, I needed

antibiotics for the UTI's but as for the other " infections " 90% of the time

there was no definite indication whether it was viral or not. So I think I

may have taken way more antibiotics than necessary. Probably not a good

thing for my immune system.

January of this year I started a new job as an Administrative Assistant at

an Oncology Research firm. Two weeks into the job I got a cold, the

following week it turned into bronchitis, my primary physician put me on

another course of antibiotics. I seemed to be getting better then beginning

February I developed Chronic Urticaria(hives). The first week I had them, I

was covered head to toe, itchy and hot. It came on a weekend and I paged my

doctor who intructed me to take 50mgs of benadryl. I also have asthma, and

I started wheezing while I was covered with hives. That week was hell and I

spent most of it sleeping from the benadryl. The hives no longer cover me

from head to toe, but come and go on various sections of my body.

My doctor at the time, put me on steriods, which didn't help me. Then she

sent me to an allergist. The allergist put me on more steriods (still

didn't make a difference). He added an antihistamine, periactin which

worked well for the hives, but it made me even more tired than the benadryl,

and it stimulates your appetite so I was extremely hungry. At the time I

was usually running low-grade fevers. My primary doctor had done some blood

tests which indicated my white blood cell count was below normal and my

SED(sedimentation) rate was high. Not off the charts high, but higher than

it should have been. I'm not sure if you are familar with what a SED rate

test is. It is something that indicates an inflammation of some sort in the

body, although it doesn't tell you what the inflammation is. Due to these

things the allergist though that an underlying infection was the cause of my

hives. He sent me back to my primary doctor, stating it was her job to find

the underlying infection.

Well she sent me to an Infectious Disease specialist (who noted I had huge

swollen glands in my neck)and an Urologist (because of the UTI's). Neither

found anything except for my large tonsils. Then she sent me to an ENT

specialist to see if I should have my tonsils removed. He cautioned against

it due to my age. I've also had horrible stomach problems, which started to

get worse in may. I developed gastric reflux. Then one night in June after

having incredible stomach pain for over 24 hours, I threw up, still didn't

feel better so I thought I should go to the Emergency Room. They found

nothing, I started to feel a little better and they sent me home. Went

home, took a nap, woke up with chills and a fever, called my primary doctor,

she gave me more antibiotics and sent me off to a Gastrointestinal

specialist who told me nothing other than what I already knew, " you're

esophagus shows evidence of gastric reflux. "

Ok, let me back track just a minute. I'm trying to remember all the doctors

I saw. In April or May I developed TMJ in my right jaw so bad, the entire

right side of my head hurt. My head hadn't hurt that bad since I had my

wisdom teeth removed. That lasted two weeks but fortunately improved.

Now, the whole time these things were happening, my primary doctor kept

asking me, " what's going on in your life that's stressing you? " Nothing was

going on at the time. Only recently I've been stressed over my fiance

leaving for school in another country...but that wasn't an issue when all

this started.

The last thing she said to me was, " You need to find religion, find god, and

if you nurture your spiritual side you will get better? " That really upset

me.

My mother works as a Home Health Aide. She takes care of sick & dieing

people. Not a glamorous job. She had a meeting at work where they

discussed CFIDS, and gave her a phamplet for the National CFIDS foundation.

She let me borrow it and I found their website: http://www.ncf-net.org

I emailed them a shortened version of what was going on with me. Maybe this

is fortunate for me as their headquarters is very close to where I live.

The person who replied stated they were not a doctor but that I sounded like

a typical patient and gave me the name of a woman doctor in my area who has

diagnosed thousands of people with the disease. She also practices holistic

medicine as well.

I called to schedule the appointment in June, she was booked till August but

I made an appointment anyway. A month before my appointment she sent me a

long thing to fill out. It listed symptoms, told me to rate them. It had

lots of questions about food intake, I had to keep a food journal for 5

days. It asked all the meds, vitamins and supplements I was on and their

doses. I saw her for the first time two weeks ago. She spent two hours

with me going over everything and examining me. She diagnosed me with CFS

and gave me some tests to take home, that I had to mail out somewhere far

and they'll take a couple of weeks to come back. They're to check if my

liver is adequately detoxifying, to evaluate my metabolic function at a

cellular level (I've had my thyroid tested, it's normal), to measure the

levels of gut microorganisms, test for hidden food allergies, some other

stuff I can't remember.

She mentioned I could possibly have a systemic yeast infection as well.

Especially due to the fact that I have taken so many antibiotics, have been

on steriods, and take the birth-control pill. Also sugar cravings is

another indication of yeast-infestation. But I think the tests will tell

for sure. I had read about the yeast-thing before I had seen her so some of

the supplements I was taking were to treat that but she said some of the

ingredients in them were also effective against bacteria and viruses, so

that I should keep taking them. She also mentioned that she has treated a

few people with hives for systemic yeast infections and their hives went

away with treatment.

She added CoQ10, NADH, EFA's and Colostoferrin (something that's in human

breast milk, is supposed to enhance the immune system). But I may not

notice a difference for 6 to 8 weeks. She also recommended Photo-Oxidation

Blood therapy which I am going to be trying and I posted some information

about it recently in the group.

She also made some dietary recommendations. Get some protein with each

meal. Have fruit with each meal. Cutback on sugar (She was appaled when

she saw my food journal, I had ice cream for breakfast on day). Eat lots of

watermelon and squeeze lemon in my water...this is supposed to help detoxify

the body.

So if all this makes my health improve in the next few months, I'll be sure

to let everyone know.

~Jen

[Guest guest]

Jen,

Thank you for sharing. Please keep us posted about your results. I'm really

curious to see if all this helps. If it does, I may follow in your foot

steps )

Hugzzzzz,

[Guest guest]

Jen,

Thank you for sharing. Please keep us posted about your results. I'm really

curious to see if all this helps. If it does, I may follow in your foot

steps )

Hugzzzzz,