Re: Help

[Guest guest]

Hi Lona,

First let me say that there are women who post here

who are far more knowledgeable about how to help with

the yeast/bacteria. I have had similar problems,

treat one, get the other, treat the other, get the

first! AAUUGHHH! I don't have a cure, I go see a

specialist next month who can hopefully help.

What I can offer some advice on is the response

that you got from the nurse. You MUST inform the

doctor of what she said to you. It was totally

uncalled for and extremely insensitive. I'm sure your

doctor would want to know. He's not going to want his

nurse allienating his patients. Plus you deserve to

be taken seriously. I can totally relate to wishing

others had this for a week. Then perhaps people would

understand us better and realize this is a painful,

serious problem.

I don't know if I've helped but I wanted you to

know you're not alone.

Hang in there and feel better soon!

---Lona wrote:

>

>

>

>

> I have been fluctuating between yeast and bacterial

infections of the vulva.

> I have been on Sporanox.. 200 mg.. two times a day

for four months. The

> last few infections I have had have been bacterial,

going back and forth

> between different kinds of strep and staph. They

do a culture and disc

> sususeptablitly test, and find the ( right) drug.

The time before last it

> was tetracycline, which something changed within a

week. Another culture,

> another drug. I have talked to a compounding

pharmacist, who recommended

> olive leaf extract. So what I do now is take my

antibiotic, sporanox,

> yogurt, and adhere to a yeast fee hypoglycemic diet.

> My practitioner is out of the week. I just called

the office to talk with

> her associate. Was stopped by ( the nurse).. Who

told me I dwelled on this

> problem to much?? I wish she has it for a week.

Not nice, but neither were

> either one of their attitudes. I can't fix it so

go away !! I am using 400

> mg. of Prometruim a day and tri-est. I use Terazol

every night when I am on

> antibiotics. Why can't my normal flora establish?

What am I supposed to

> do? I will be seeing my regular practitioner on

Monday, but in the

> meantime, I am hacked to say the least. I have

heard it a thousand times.

> Wear cotton underpants, don't use soap down there,

eat right. Do they think

> I am an idiot? This will be year seven. Give me a

break. With your

> collective knowledge I have been able to ferret out

some things on my own.

> Without the medical establishment. I know my

practionter doesn't feel this

> way. But she is not here. I have tired bee kind,

only for one night. It

> doesn't sting me, but I don't have yeast, at the

moment. Every time they

> put me on Cipro, it's a given. Can anyone help? I

need to get my flora in

> balance.

> BTW, I had sex a month ago. Ended up with the

bacterial infection. The

> practitioner says I didn't catch it. That the

discharge that comes from

> sexual excitement can make one more prone to

infection.

>

> Mitakuye Oyasin

> Lona

> http://notableweb.com/nativeculture

>

>

>

>

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

[Guest guest]

I don't know how to get your flora back to normal, but I can tell you that I

understand your frustration over the medical establisment. I

can't tell you how many times I've been treated like an idiot by a doctor of

a nurse who can't even do their job right (I feel like

telling them " hey, in a year I'll be a PhD in math " , but I don't

think that would help). I hear you girl, I understand you perfectly

well. Hang in there and receive my best wishes,

I just called the office to talk with

>her associate. Was stopped by ( the nurse).. Who told me I dwelled on this

>problem to much?? I wish she has it for a week. Not nice, but neither

>were

>either one of their attitudes. I can't fix it so go away !! I have heard

>it a thousand times.

>Wear cotton underpants, don't use soap down there, eat right. Do they

>think

>I am an idiot? This will be year seven. Give me a break. With your

>collective knowledge I have been able to ferret out some things on my own.

[Guest guest]

What kind of Drs. have you tried? Have you gone to any

rhuematologists? They would be more apt to listen and

to do tests and an officially dx. With that they will

also be more apt to try to actually treat you.

Also you might want to try doing a web search for

Fibro specialists in your area....

I did a quick search and came up with the following

items. But you would need to find their phones and

addresses. If you can't let me know and I will try to

track them down for you....

New England Spinal Care - certified NUCCA

chiropractor. Treatment for multiple sclerosis,

fibromyalgia, and neck and back pain.

Simon, - provides chiropractic services for

musculoskeletal pain with a focus on fibromyalgia.

Hope that helps some....

Site-Mod

--- christopia@... wrote:

>

> This email is going to take alot of strength to

> type, but I need to find

> help. I am hoping another person will understand and

> maybe give me answers the

> doctors are not.

=====

Site-Mod: Fibromyalgia_Support_Group

http://health.groups.yahoo.com/group/Fibromyalgia_Support_Group/

If I can't serve as a good example, then I guess I'll just have to serve as a

horrible warning.

__________________________________________________

[Guest guest]

Christoph,

I feel so much pain in your letter. And my heart break for you. I also have not been diagnosed yet yet see the symptoms as if I were a poster Child for this disease. And I do see and hear from any one I talk to that doctors are puzzled as to what to do. Keep searching, do not give up, I believe there has to be hope for us. If I didn't have hope I too could not go on.

In fact I was sorting through my winword documents and found a suicide letter I had written to my loved ones months ago when I just could not go on. I read it and was scared to my soul. I know that evening if someone had told me I would feel that way for the rest of my life I would have not went on. We need eachother so badly here because as much as the ones who love me say they understand,.......THEY DO NOT!!!!! And trust me if you have people trying to be supportave of you, there will be times that no one can comfort you except the people in here. And for some reason no matter how much I complain I am met with comfort and not a classic " Oh I know how you feel"

Important point here is even though many DO know how I feel they realize each person feels their own pain and there is support here. Do not give up Please stay here and let us be here for you.

This room may save your life, I can tell you this after about 9 months of up and down pain, I woke this morning and had actually dreamed in the first time in months. And from 10:30 this morning until 2pm I felt almost normal. Please do not lose hope, we need more men who can help us prove this isn't a woman thing and all in our heads. I will be here if I can, Debi Y.christopia@... wrote:

This email is going to take alot of strength to type, but I need to find help. I am hoping another person will understand and maybe give me answers the doctors are not.

As I said in other emails, I am a 25 year old male in Boston Massachusetts, Usa, 5 weeks ago I was normal, happy, living life to the fullest, love to dance and run around. My left elbow began to get tired, it clicked and crunched, it went up to my shoulder, burning, under my armpit I have a big muscle clicking crunching that feels sore and kinda pulls if I shrug or lift..my entire back aches from neck to tailbone, the pain has moved to my right side, both shoulders burn, my elbows are always so tired that I have trouble typing, washing my hair, my mind is not my own, I am always very sad, VERY fatigued, my job let me go this week because they said I was a liability and besides I was too sore and tired to lift and stand much. SOOO.. Ive seen back doctors, was put on prozac and buspar, both left me with bad sexual side affects, so I stopped them, now I just wake up daily feeling sad and down, not wanting to live life, by the end of the day I crawl home to my heating pad and

sleep. Alot of people here in the group email me and tell me it sounds like FIBRO, so ive done search after search, and the more I search the more I think its me, but the sad stories I recieve from everyone leaves me not much hope, other than I will be in pain the rest of my life, and it only gets worse as I age. At 25, I want to die, I feel rather than living in such pain, I would rather go to sleep and not wake up. I can no longer hope for graduate school with interior design due to my tired arms. I was let go from a job I love, due to being sent DR to DR, to DR, and all of them tell me ITS IN MY HEAD, i look and appear healthy, my physical exam shows my body being fine. I try and tell the dr the pain I am in, and he told me it was all in my head, and even if I had fibro, he couldnt do anything about it other than tell me to live with it the best i can, for there is no cure. He told me he would not give me pain pills, which killed me, because I need them. I need the help of

anyone who has this, I also have been having bad prostate problems, and I heard that goes with male fibro, prostatits, chronic.

My body is not my own, I am overwhelmed and just want to sleep. I think to myself that I will do yoga, take meds, keep a healthy mind.. but my body wont let me do anything I want to do, and when I force myself to dance or work, im in such pain. I feel the more stressed I get, the more sore I get?

Will anti depressents really help the pain? am I going to suffer like this day after day?

Anyone from Massachusetts that has a doctor that understands? I am going to see so many people over and over, and they all think I am nuts. I have all the trigger points.

Can Fibro hit me this fast? within 5 weeks time, ive gone from myself to someone I do not know, From a 25 year old mind, to an 85 year old body.

Please, Anyone.

Christopia@...1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.http://f1.pg.photos.yahoo.com/ph/jade10_49622/album?.dir=/My+Photo+Album & .src=ph & store= & prodid= & .done=http%3a//f1.pg.photos.yahoo.com/ph/jade10_49622/my_photos

Glimpse into my vida loca!!!!!!!__________________________________________________

[Guest guest]

Dear

I can so relate to how you are feeling, I was only 30 when I first

started having symptoms, only with me it took years before I was

diagnosed. I also have Lupus which makes things worse. I started out

just wanting to sleep all day, this in itself not being a good thing

with 2 kids to take care of. My " New " hubby thought I was just some

lazy chick he married. I remember going to Nascar with him one time

and about ready to die just trying to climb the stairs.

I am now at the point that if I am to do any real walking I need to

get an electric wheelchair, such as at amusement parks or wal-mart. It

does have it's benefits though, Now the kids run to keep up with me.

I know that the water arobics is a great thing to relieve pains as is

massage. I get the massage 3 times a week. Now I will not tell you

that it will take your pain away, but it does help for a bit. My

Doctor has me on Skelaxin to help with the muscle pains and beieve it

or not, I have found Tylonal Arthritis( over the counter ) helps to

take the edge off.

The only other thing I can suggest is no matter how much it hurts try

to move. I personally have noticed that the more I am sedintary the

stiffer I become and the harder it is to get anywhere.

Don't give up, We all believe you as will the doctors. It wasn't that

long ago that nobody thought this condition existed.

" May you go one day without Pain "

April Joy

site-Mod

[Guest guest]

Wow, reading your post made me want to cry and reach out and hug

you. My name is Tina and i am 23. I have the fibro dx and i does

sound to me like you do too. I have had health problems all my life

and had a somewhat gradual worsening of pain that led me to the

fibro dx. But the last two months things went from bad to i can't

handle this anymore. It was basically overnight that things changed

and I felt that 'i can't do this, i can't handle this everyday. I

don't want to think of spending my life like this only to get worse.

what good can the future possibly hold for me???' I felt it, i asked

the questions, i got bad. But know that I GOT THROUGH IT. The pain

is not gone, it's still there, the unknown future is still there.

BUT I'm alive! I have people that love me, People that i love and i

turned to them for help. that got me through it. The one thing i

REALLY want to stress to you is. GO FIND ANOTHER DOC> Go right now,

start looking because your current doctor is not going to be able to

help you. Unfortunatley, there are not alot of docs that cant or

won't believe in fibro and treat you for it. I can't explain why

soem peolple are retarded. Yeah, that's what i think they are for

not believing that the pain/symptoms are real. I've been through

the 'it's in your head'. Stand your ground, what you are feeling is

real, it's not in your head and there a thousands/millions of people

who know that what you are feeling, saying is real. You have the

right to find a doc who will listen and help you. And when you find

the right doc, things are gonna change. This is not hopeless. There

ARE drugs that can help you cope with this. There is no cure, no,

but there are things to help you fight the symptoms. It's not fair

that some of us have to experience this, but our greatest tool is

each other. To know you are not alone gives you extra ammunition to

fight. When things get tough, and they do, The thing to remember is

that they CAN get better. It's not hopeless, things will have to

change and your life will be different. But it IS liveable once/if

you can get the help you need.

tina k

[Guest guest]

I'm just wodering if hubby is on Lupron or Casodex or Zoledex?

Help

I guess some days i am doing great and some days i crash.. today is a bad day for me.. i am being a worry nut.. like i said my husband's PSA level after surgery is 32 and i am scared.. we are doing more tests to see what we can do for treatment.. i would love to hear from anyone who has had similar results.. his PSA to start with was 17 and so we went ahead and had surgery and now its 32... oh people i am worried sick..

[Guest guest]

Tamtam here is a clip from a message on psa rising web

site it may help calm your nerves a little but until

you get things under control with your understanding

of the disease. I though this is uncommon but ive seen

documented studies almost as bad. It depends on the

person.

question

Has anyone here ever heard of PSA over 9000? What was

the prognosis and treatments?

answer

Yes, I've heard of psa's in the high thousands in men

with very advanced prostate cancer. If the man is

diagnosed with a PSA this high, usually the cancer has

spread to his bones. Hormonal therapy should bring the

PSA down,shrink tumors and relieve pain (if there is

pain) and other symptoms. In a man who is hormone

naive, hormonal therapy may be effective for weeks,

months or even years.

Other treatments might include radiation to bone mets,

or the radioactive drug samarium, or chemotherapy

(Taxotere and prednisone is the typical first line

chemo combination). A bisphosphonate drug like Zometa

might also be useful to strengthen the bones against

stress fractures

--- Tamtam wrote:

> I guess some days i am doing great and some days i

> crash.. today is a

> bad day for me.. i am being a worry nut.. like i

> said my husband's PSA

> level after surgery is 32 and i am scared.. we are

> doing more tests

> to see what we can do for treatment.. i would love

> to hear from anyone

> who has had similar results.. his PSA to start with

> was 17 and so we

> went ahead and had surgery and now its 32... oh

> people i am worried

> sick..

Have a nice Day!

__________________________________________________

[Guest guest]

thank you.. so a PSA of 900 means the cancer is rather advanced and what about a PSA of 32. is it that bad...?

Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

32 is not good but that was 9000 not 900. I wanted you

to also see the treatments. Your Wayne? is gonna be OK

for along time. He just had surgery didn't he. You

need to give him and the treatments time to start

working. If they just started ht then you can expect a

spike in the psa, it could be an infection, If you've

had sex 2 days prior to the psa test it would go up.

Lots of things to consider so please dont worry too

much yet. Just make sure your confortable with your

doc and his treatment plan.

Take care

Sam

Understand your talking to the pessimist of this

group.

--- wrote:

> thank you.. so a PSA of 900 means the cancer is

> rather advanced and what about a PSA of 32. is it

> that bad...?

>

>

>

>

>

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

> Bring words and photos together (easily) with

> PhotoMail - it's free and works with Yahoo! Mail.

__________________________________________________

[Guest guest]

, It would gratly help those of us who are readying your replies to posts if you would include at least a portion of the post to which you are replying. Often your comment makes perfect sense to you because you know exactly which person you are responding to, but those of us reading have to guess. I have Yahoo too. If you just click on reply and then write your comments on the space provided, we will all know the specific background for your reply! Of course if the original post is lengthy you would want to delete enough of that email that is pertinent to your comments. Thanks a lot! Judy wrote: Great.. just that i worry lot sometimes. will keep you posted if anything new comes

up.. Judy Thurman "What I do you cannot do; but what you do, I cannot do. The needs are great, and none of us, including me, ever do great things. But we

can do small things, with great love, and together we can do something wonderful." Mother

[Guest guest]

, It is impossible to determine actual aggressivenss by PSA. I have a friend, on another list, whose husband was diagnosed with a PSA of 7,100. 7 years ago. He is still with her and has never had chemotherapy. My husband was diagnosed with a PSA of 1.7 (one point seven) and died 2 years ago. There are many other factors involved. As I remember your post, your husband had a radical prostatectomy and then his PSA immediately rose to 32. Obviously the disease was out of the gland before the surgery. I haven't the rest of the information about your husband but your job now is to find the best medical oncologist, not a urologist ,who specializes in PC and consult with him or her. Depending on the results of a recent bone scan there are several differents treatments that would have action against the disease. If we can help more please

write. Best, Judy wrote: thank you.. so a PSA of 900 means the cancer is rather advanced and what about a PSA of 32. is it that bad...? Judy Thurman "What I do you cannot do; but what you do, I cannot do. The needs are great, and none of us, including me, ever do great things. But we can do small things, with great love, and together we can do something wonderful." Mother

[Guest guest]

YEA!!!!!!!!! Good job! wrote: okay is this what you mean.. , It would gratly help those of us who are readying your replies to posts if you would include at least a portion of the post to which you are replying. Often your comment makes perfect sense to you because you know exactly which person you are responding to, but those of us reading have to guess. I have Yahoo too. If you just click on reply and then write your comments on the space provided, we will all know the specific background for your reply! Of course if the original post is lengthy you would

want to delete enough of that email that is pertinent to your comments. Thanks a lot! Judy wrote: Great.. just that i worry lot sometimes. will keep you posted if anything new comes up.. Judy Thurman "What I do you cannot do; but what you do, I cannot do. The needs are great, and none of us, including me, ever do great things. But we can do small things, with great love, and together we can do something wonderful." Mother

[Guest guest]

thank you.. so a PSA of 900 means the cancer is rather advanced and what about a PSA of 32. is it that bad...?

Any PSA over 15 should be highly suspect that it may be outside

the prostate. A PSA of 32 would have a high risk of being systemic.

In that case, local therapy probably would not be curative.

I wish you all the bestAubrey Pilgrim, DC (Ret.)Author of A Revolutionary Approach to Prostate Cancer-Read the original book for free at: www.prostatepointers.org/prostate/lay/apilgrimRead the new edition for free at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision