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Hi Everyone,

HELP I need a new doctor. A new body would help too, but I hope my chances

of getting a new doctor are better. The new body I'll get eventually, if

you know what I mean!

I had my monthly doctors appointment today. The doctor has never suggested

I come once a month but I felt like I needed too. Plus it takes three weeks

to get into see him anyway, so I make my appointment after each visit.

Usually I have a problem or two when I go into see him anyway. This time it

was the insomnia. He had mentioned before that he could give me something

to help me sleep, so I figured now was the time to accept. Also, the first

digit on my index finger has been swollen and painful for about two weeks

and made my whole hand ache. My husband had suggested I write down all of

my symptoms and give it to the doctor, so I did that. The doctor went

through each thing. " Your sore throat, swollen glands are because of the

drainage. And all of your aches and pains are part of the 'Lupus'. " Boy

did that through me for a loop. I mentioned that I was under the impression

that the lupus test was negative. He told me that it was borderline,

because I did have a positive for some kind of tissue disease. Then he

mentioned the EBV that was positive. I've had some really bad headaches

lately too. So he gave me a RX for vicaden(sp), something for the joint

inflammation, and something to help me sleep. I haven't picked up the RXs

yet.

He had me schedule an appointment with the lab for a " lupus profile " . Next

time I go in I'm going to ask for a copy of the results of all the test that

I've had in the last year. Maybe I can take them in to another doctor, if I

can find one, and see what they think of the results. Any other doctor and

I will have to pay for it. The great medical we have through the Armed

Forces Retired personnel, is for the birds. I might be able to find out if

any of the doctors at AFB specializes in CFS. Then the trick would

be to get in to see them. I think we are going to have to shell out the

bucks just for me to see a doctor that can help.

Sorry to vent! Yet I feel sure that most of you have felt this way too.

Anybody have any thoughts on the 'lupus' deal? Guess I will have some

results in a couple of weeks. I take the test on Wed. I'm so tired of

being sick and tired.

Thanks everyone for listening.

Judi

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Christie,

For several years my friend just carried the diagnosis of FMS. About two

years ago, the diagnosis of lupus was added. She's had more than her

share of hospitalizations due to spinal meningitis and I don't know what.

For a time, they were even thinking she had a tumor on her pituatary

gland. Also considered a Hashimotos (sp?) diagnosis. From what I

understand, the most obvious difference between the CFS and FMS diagnoses

are the presence of painful pressure points. I did ask her about getting

colds. She doesn't and neither does . I don't know what brought

about the diagnosis of lupus, but I think it had something to do with her

life-threatening hospitalizations. She doesn't have a home computer,

otherwise I believe she'd love to join this list. I told her there were

others who had a similar diagnosis to hers on this list. Perhaps I can

sign her up through her husband's email at work. Sorry I couldn't be more

specific, but I hope this helps.

April

On Sun, 25 Apr 1999 19:07:29 +0000 " C.Tab. " <tab@...> writes:

>From: " C.Tab. " <tab@...>

>

>

>Dear April,

>

>What were similiarities or differences?

>

>Christie

>

>

>

>

>

>>

>>From: April L Tyree <tyree.pines@...>

>>

>>I just spoke to a friend this evening who has FMS/lupus, comparing

>notes

>with her on 's (my 10-year-old's) CFS. I was describing how

>

>crashed with severe sore throat last week (she's finally better, was

>back

>at softball practice today), .

>>

>

>

>------------------------------------------------------------------------

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>Tell them about ONElist's 115,000 free e-mail communities!

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>each other, not to give medical advice. If you are interested in any

>treatment discussed here, please consult your doctor.

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Dear April,

There are also a couple of lupus lists that are good for support and

information, if your friend is interested. Although lupus can involve major

organ damage, there seems to be overlap between CFIDS/FMS and lupus and

its related disorders - a frustrating situation! I hope you daughter

continues to feel well.

Thank you for writing,

Christie

tab@...

At 07:39 PM 4/25/99 EDT, you wrote:

>From: April L Tyree <tyree.pines@...>

>

>Christie,

>

>For several years my friend just carried the diagnosis of FMS. About two

>years ago, the diagnosis of lupus was added. She's had more than her

>share of hospitalizations due to spinal meningitis and I don't know what.

>For a time, they were even thinking she had a tumor on her pituatary

>gland. Also considered a Hashimotos (sp?) diagnosis. From what I

>understand, the most obvious difference between the CFS and FMS diagnoses

>are the presence of painful pressure points. I did ask her about getting

>colds. She doesn't and neither does . I don't know what brought

>about the diagnosis of lupus, but I think it had something to do with her

>life-threatening hospitalizations. She doesn't have a home computer,

>otherwise I believe she'd love to join this list. I told her there were

>others who had a similar diagnosis to hers on this list. Perhaps I can

>sign her up through her husband's email at work. Sorry I couldn't be more

>specific, but I hope this helps.

>

>April

>On Sun, 25 Apr 1999 19:07:29 +0000 " C.Tab. " <tab@...> writes:

>>From: " C.Tab. " <tab@...>

>>

>>

>>Dear April,

>>

>>What were similiarities or differences?

>>

>>Christie

>>

>>

>>

>>

>>

>>>

>>>From: April L Tyree <tyree.pines@...>

>>>

>>>I just spoke to a friend this evening who has FMS/lupus, comparing

>>notes

>>with her on 's (my 10-year-old's) CFS. I was describing how

>>

>>crashed with severe sore throat last week (she's finally better, was

>>back

>>at softball practice today), .

>>>

>>

>>

>>------------------------------------------------------------------------

>>Looking for the perfect gift for a friend?

>>http://www.ONElist.com

>>Tell them about ONElist's 115,000 free e-mail communities!

>>------------------------------------------------------------------------

>>This list is intended for patients to share personal experiences with

>>each other, not to give medical advice. If you are interested in any

>>treatment discussed here, please consult your doctor.

>

>___________________________________________________________________

>You don't need to buy Internet access to use free Internet e-mail.

>Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

>or call Juno at (800) 654-JUNO [654-5866]

>

>------------------------------------------------------------------------

>Has ONElist changed your life?

>http://www.ONElist.com

>Visit our homepage and share with us your experiences at ONElist of the Week!

>------------------------------------------------------------------------

>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

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Guest guest

Judi,

Boy, do I sympathize with that trapped feeling. Have

to have Kaiser with my current job. Am working on

changing that, but meanwhile kicked my little heels

hard enough to get in to see the only identified CFIDS

specialist in SF Kaiser. We went. He ordered tests. He

agreed to sign the DMV papers for disabled plates. We

went over the whole list of my husband's symptoms. He

prescribed generally what your MD did. And that's it.

The tests, as usual, were within range. I forwarded

him the recent info posted here about B-12, and he

said thank you.

He hasn't questioned the 9yr old dx. He hasn't set up

any kind of testing or treatment schedule even for the

acute stuff. Just thanks.

That's it.

What the hecuba do we do now?

Doris

--- Judi Hoynacki <judihoynacki@...>

wrote:

> From: " Judi Hoynacki "

> <judihoynacki@...>

>

> Hi Everyone,

>

> HELP I need a new doctor. A new body would help

> too, but I hope my chances

> of getting a new doctor are better. The new body

> I'll get eventually, if

> you know what I mean!

>

> I had my monthly doctors appointment today. The

> doctor has never suggested

> I come once a month but I felt like I needed too.

> Plus it takes three weeks

> to get into see him anyway, so I make my appointment

> after each visit.

> Usually I have a problem or two when I go into see

> him anyway. This time it

> was the insomnia. He had mentioned before that he

> could give me something

> to help me sleep, so I figured now was the time to

> accept. Also, the first

> digit on my index finger has been swollen and

> painful for about two weeks

> and made my whole hand ache. My husband had

> suggested I write down all of

> my symptoms and give it to the doctor, so I did

> that. The doctor went

> through each thing. " Your sore throat, swollen

> glands are because of the

> drainage. And all of your aches and pains are part

> of the 'Lupus'. " Boy

> did that through me for a loop. I mentioned that I

> was under the impression

> that the lupus test was negative. He told me that

> it was borderline,

> because I did have a positive for some kind of

> tissue disease. Then he

> mentioned the EBV that was positive. I've had some

> really bad headaches

> lately too. So he gave me a RX for vicaden(sp),

> something for the joint

> inflammation, and something to help me sleep. I

> haven't picked up the RXs

> yet.

>

> He had me schedule an appointment with the lab for a

> " lupus profile " . Next

> time I go in I'm going to ask for a copy of the

> results of all the test that

> I've had in the last year. Maybe I can take them in

> to another doctor, if I

> can find one, and see what they think of the

> results. Any other doctor and

> I will have to pay for it. The great medical we have

> through the Armed

> Forces Retired personnel, is for the birds. I might

> be able to find out if

> any of the doctors at AFB specializes in

> CFS. Then the trick would

> be to get in to see them. I think we are going to

> have to shell out the

> bucks just for me to see a doctor that can help.

>

> Sorry to vent! Yet I feel sure that most of you

> have felt this way too.

> Anybody have any thoughts on the 'lupus' deal?

> Guess I will have some

> results in a couple of weeks. I take the test on

> Wed. I'm so tired of

> being sick and tired.

>

> Thanks everyone for listening.

> Judi

>

>

>

------------------------------------------------------------------------

> Looking for the perfect gift for a friend?

> http://www.ONElist.com

> Tell them about ONElist's 115,000 free e-mail

> communities!

>

------------------------------------------------------------------------

> This list is intended for patients to share personal

> experiences with each other, not to give medical

> advice. If you are interested in any treatment

> discussed here, please consult your doctor.

>

_________________________________________________________

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  • 2 years later...
Guest guest

I lived with intermittant Sore throats when I was getting sick.THere were months that I couldn't talk.

THey came especially when I was tired. Then my first herx on clindamycin was the most painful sore throat of my life. And yet the doctors didn't see anythin in my throat! I had another herx of a very bad sore throat..

And now I rarely get one.

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  • 4 weeks later...
Guest guest

I used to herx with the worst sore throats I ever had.

In a message dated 05/29/2001 3:30:54 AM Eastern Daylight Time, rheumatic writes:

Dear Carol, Just a thought but why is the sore throat not a herx. You have

>changed your meds - cases herxes - and perhaps you are herxing with the

>sore throat etc. My worst herx was a two month sinus infection which

>included swollen glands and sore throat. Just a thought and best wishes.

>

>

>

>> [Original Message]

>> From: Carol Wilkie <carol@...>

>> <Bryarwoode@...>

>> Cc: <rheumatic >

>> Date: 5/27/01 2:16:19 PM

>> Subject: rheumatic doxycycline

>>

>> Hi Bev

>> Since I've changed from Tetracycline to Doxy 200mg M/W/F (16 wks now) I

>have for the first time had a problem with yeast, which I now think is

>causing this long time sore throat. I've now just started taking Wild

>oregano oil drops and olive leaf extract. I've decided to stop my doxy for

>a week (maybe 2) to see if I can get on top of it. I've read that Wild

>oregano is a very powerful antifungal so I'm hoping it will work.

>> BFN

>> Carol (UK)

>>

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  • 3 years later...
Guest guest

Something else you can test for:

sore throats

Hi Keely,

In regards to 's sore throat, excess fat, fat imbalance or hydrogenated

fat can cause inflammation in the throat. Anything with sulfur will be an

antidote to this such as low dosage sulfur homeopathic (6X), MSM, eggs, onions

and garlic. LOVE, Eileen

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  • 8 months later...

I have a feeling that many of us that feel instantly better are going to have a slide backward at some point. I am sure of it. That is why I am trying not to get too much hope up that I can be better and cured at this time.

Some of my muscle pain is coming back but to this day the brain fog is gone.

I have to admit I am amazed at this.

I was sick for so many years I had forgotten what it was like not to be sick. Maybe that is why it is so good to be without brain fog. I can live with some pain if that brain fog is gone. That was by far the worse symptom for me. I can honestly say that I pray for you dear to find health again. How long has it been since your surgery? Did you feel better at first and then go back down hill at all or did you feel bad after surgery and get no relief at all?There has to be a reason some do better than others but I have no clue as to what it could be.

I wish you well.

Annielurkula84 <lurkula84@...> wrote:

I was wondering if anyone has had a problem with chronic sore throats after explant. I had my cheek implants removed 10 months ago and then I started feeling a strange kind of fullness in my throat, it is always raw and painful when I swallow and my tongue feels tingly. I have been dealing with this symptoms for many months now and not one doctor has any clue. Also have severe bruise-like pain under my ribs on both sides which also came on after explant. I am reading a lot of posts whereby people take out their implants and feel instantly better and am feeling a bit disheartened about my own recovery. Ali

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Ali,

I had problems with chronic sore throats before

getting my implants out . . . turned out it was

because of multiple chemical sensivity brought on by

my implants. It gradually got better as I detoxed.

Do you have any other types of implants? It seems that

most women who were symptomatic, feel better after

explant. However it's not uncommon for symptoms to

continue for some time. It's been eleven years for me,

and I still have to be on guard.

Since it's your mouth and throat, you might check for

Candida . . . eating some raw, fresh, crushed garlic

may be a quick fix. But if it's Candida, you will need

to continue on probiotics, like Primal Defense, for

some time.

Hugs,

Rogene

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Ali,

I'm going to suggest something I've NEVER suggested

someone do . . .

Eat a really sugary, sweet dessert. . . See if that

makes things worse. Candida feeds on sugar. The

symptoms should get worse if it's Candida.

I don't know why, but most medical doctors don't

accept the idea that Candida can be a problem.

Hugs,

Rogene

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  • 3 years later...

Thank you for that article on antibiotics for sore throat Aliza. I quote part

of it here, but some of you may read the entire article, explaining why we need

cultures and tests before prescribing antibiotics for sore throats. It's an

older article, but timely in it's approach. We need to resist taking an

antibiotic for everything. The quote:

" In recent years, physicians have been strongly encouraged by public health

experts to more carefully prescribe antibiotics, to prescribe them less often by

using tests with greater diagnostic accuracy, and to avoid giving a

broad-spectrum antibiotic when a more specific one will do. Bacteria are quick

learners and can change their makeup to allow them to survive despite the

presence of antibiotics. Overuse of antibiotics has been responsible for making

many bacteria less responsive to available antibiotics. Preventing bacterial

" superbugs " -organisms that can resist our strongest antibiotics-is the major

reason for this more cautious approach. "

http://labtestsonline.org/news/strep051202.html

More information I found was that " 1) genetic testing does not just help a

physician diagnose disease, but genetic tests are becoming available as a result

of recent and rapid advances in biomedical research. " 2) Pharmacogenomics is

the study of how drugs are metabolized in the body and the variations in the

genes that produce the metabolizing enzymes. It offers doctors the opportunity

to individualize drug therapy for patients based on their genetic make-up " .

Personally I am

a true advocate of this, just didn't know the name. Many would have the

opportunity to know exactly what is the best dose for them based on their own

metabolism. Perhaps we would have less side effects and better results.

http://labtestsonline.org/understanding/index.html

Thanks for sharing your research and I hope you are well, we have not heard from

you in a while.

Blessings to all,

Lottie

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