New and Confused

[Guest guest]

Hi Tessa,

What area do you reside in. If you live in the

St.Louis MO area I might be able to make a few

suggestions as I am an active Volunteer with the

Arthritis Foundation/Lupus and am a leader of a Arth.

Support Group with knowledge of other Fibra. Groups

and people with it. Have you seen the New book and

folders that are available though the Arthritis

Foundiation?

There are two Profs., one at St.Louis Universty and

the other at Washington Universty that under grants

have an on going studie on Arth.. They have found the

D.N.A. conection for Rumitoid Arth. and currantly have

800 families under studie. These two profs. are Board

Members of the local Arthritis Foundiation-Eastern

Missouri Chapter.

Roy B.

Skipperoy@...

--- simprl@... wrote:

> Hi! I'm new to this group and also to computers! I

> have Systemic

> Lupus, Fibromyalgia, Raynald's Syndrome, cea,

> failed back surgery

> that left me in a coma and on a respirator for 3

> weeks, and

> on/and/off constipation. I've tried most of the

> " traditional "

> treatments and prescriptions (I'm currently on 5

> different

> medications taken several times a day), and not

> getting any better.

> I have also tried accupuncture, IV's of nutrients,

> Reiki, and nothing

> seems to help much. I also use massage therapy and

> have continued

> that even though it doesn't help for very long, but

> it feels so good

> and helps me to relax (I also have a lot of

> anxiety). I took an

> extended trip recently and the preparation and the

> traveling caused

> me to go into an extremely bad flare of the Lupus

> (lots of pain and

> fatigue, skin rash, etc.) I was reading a local

> publication that is

> dedicated to alternative medicine, events, etc., and

> saw an ad for

> colon hydrotherapy. It didn't really give too much

> info except it

> listed autoimmune diseases along with others

> including fibromyalgia.

> I called and got more information, but wasn't too

> sure about trying

> it. So I did some research on the web and read a

> couple of books at

> the library. So I decided to try colon cleansing. I

> haven't tried

> the oral supplements yet because I'm not sure which

> to use, and I'm

> also concerned about drug interactions. I do have

> the name of an

> M.D. who practices integrative medicine and plan to

> call him tomorrow

> to get an appointment. From all the research, I

> decided colonics

> would be a good place to start since it's just

> water. I've only

> found two certified therapists in my city and they

> both do only

> the " open system " and do not recommend the " closed

> system " . I've had

> three sessions and found that if I try to retain the

> water, I get

> much better results. My third session was last

> Friday and I felt

> pretty good, but then Saturday and today I feel very

> tired again.

> I've also have started changing my diet. I've cut

> back on sugar,

> flour and yeast, and have started eating organic

> fruits and vegies as

> well as organic juices. I've only been doing this

> for about ten

> days.

>

> I'm confused about which colon cleansing procedures

> and products

> would be best. I e-mailed one colon hydrotherapist

> (not in my state

> but has a good website) and she suggested Arise and

> Shine or Sonnes,

> along with consistent hydrotherapy either in the

> form of colonics,

> colema or enemas. I know I would not do the colema.

> I was wondering

> about the two different types of colonics (the

> therapist I e-mailed

> described her techniques and they are different from

> the one I'm

> going to). My therapist has me start the procedure

> then she comes in

> and starts the machine and leaves. There is a

> buzzer that I can call

> for her and she also buzzes me periodically to see

> if I'm ok. These

> sessions are getting very expensive and I was

> wondering if they could

> be supplemented with enemas. I'm not real sure how

> that works or

> what goes in them, what the best equipment would be,

> etc. I've also

> read contradicting information. One souce says home

> enemas are less

> risky than colonics, and another source says the

> exact opposite. I

> am totally confused. I feel like the cleansing

> would be good for my

> conditions, especially after I check to make sure

> there's no drug

> interactions, but am really confused about the

> different types of

> hydrotherapy.

>

> I apologize for the length of the post, but would

> appreciate any

> advice/suggestions you can offer.

>

> Thank you,

> Tessa

>

>

__________________________________________________

[Guest guest]

Tessa, you're doing fine with your computer. Maybe insert a couple of

more paragraph breaks the next time -- it makes it easier to digest

(pun intended). If there is anything specific you want more

information about, you can, in addition to asking questions, go to

the list archives (see bottom of page) and use the search feature.

Among other things, different varietes of the colon hydrotherapy was

discussed as recently as last week.

I have lupus, too, but not constipation -- some other digestive

irregularities, though (probably due to bacterial overgrowth).

Anyway, what I personally recommend, whatever else you also do (and

which I leave it to others to comment on), is to drink aloe vera

juice. I started taking it a few weeks ago, and so far, my digestion

has improved a lot, although there is still a way to go (I'm

considering doing a yoga and salt water total cleanse of the

intestines, but haven't dared to sign up for the session yet...).

Unfortunately, it's too little known that aloe vera very often works

well for both constipation and the opposite condition. It does not

work for parasites, but for bacteria, virae (spelling?), candida, the

ph balance, and the skin of the walls of the intestines.

Aloe vera is good for the immune system (supposedly because the walls

of the intestines are a part of the immune system), which is a point

to consider for lupus, since a boosted immune system will boost the

lupus as well. As far as I understand, the immune system will not be

boosted per se, but rather get better conditions to work under, since

the intestines will not leak bacteria and other bad stuff into the

organism so much (and which, according to some theories, especially

advocated by colon hydrotherapists, could be a cause of various

diseases). I don't think there will be a problem (I have certainly

not experienced any), and aloe vera is recommended for rheumatic

arthritis (spelling?), which is also an auto-immune disease.

Fibromyalgia goes together with not only pain, but often also

digestive problems. Possibly, aloe vera can help against fibromyalgia

in general when taken over a longer period, along with other kinds of

treatment and therapy. Anyway, digestion is one of the two main areas

of well-attested success for aloe vera (the other being the skin,

even if I'm not sure about lupus rash), although it doesn't work

equally much for everyone. To you it may seem like yet another

chapter in your unsuccessful series of herbal remedies, but I still

take the chance on recommending it..., not as the single solution to

everything, but as something that is known to work quite well for a

number of things, especially the digestion, although I can't promise

anything. One should start with a small dose and increase it over a

week or so, to avoid diarrhea (spelling?). One can take it with water

or some other juice because of the taste. Here's a link to a research

report, which mentions " gastrointestinal motility " :

http://wholeleaf.com/aloeverainfo/aloeveraoralconsumption.html

As for anxiety, this supposedly has a negative effect on various

physical things, but I guess you know that too well already.

-- Helge in Norway

[Guest guest]

> Tessa, you're doing fine with your computer. Maybe insert a couple

of

> more paragraph breaks the next time -- it makes it easier to digest

> (pun intended). If there is anything specific you want more

> information about, you can, in addition to asking questions, go to

> the list archives (see bottom of page) and use the search feature.

> Among other things, different varietes of the colon hydrotherapy

was

> discussed as recently as last week.

>

> I have lupus, too, but not constipation -- some other digestive

> irregularities, though (probably due to bacterial overgrowth).

> Anyway, what I personally recommend, whatever else you also do (and

> which I leave it to others to comment on), is to drink aloe vera

> juice. I started taking it a few weeks ago, and so far, my

digestion

> has improved a lot, although there is still a way to go (I'm

> considering doing a yoga and salt water total cleanse of the

> intestines, but haven't dared to sign up for the session yet...).

> Unfortunately, it's too little known that aloe vera very often

works

> well for both constipation and the opposite condition. It does not

> work for parasites, but for bacteria, virae (spelling?), candida,

the

> ph balance, and the skin of the walls of the intestines.

>

> Aloe vera is good for the immune system (supposedly because the

walls

> of the intestines are a part of the immune system), which is a

point

> to consider for lupus, since a boosted immune system will boost the

> lupus as well. As far as I understand, the immune system will not

be

> boosted per se, but rather get better conditions to work under,

since

> the intestines will not leak bacteria and other bad stuff into the

> organism so much (and which, according to some theories, especially

> advocated by colon hydrotherapists, could be a cause of various

> diseases). I don't think there will be a problem (I have certainly

> not experienced any), and aloe vera is recommended for rheumatic

> arthritis (spelling?), which is also an auto-immune disease.

>

> Fibromyalgia goes together with not only pain, but often also

> digestive problems. Possibly, aloe vera can help against

fibromyalgia

> in general when taken over a longer period, along with other kinds

of

> treatment and therapy. Anyway, digestion is one of the two main

areas

> of well-attested success for aloe vera (the other being the skin,

> even if I'm not sure about lupus rash), although it doesn't work

> equally much for everyone. To you it may seem like yet another

> chapter in your unsuccessful series of herbal remedies, but I still

> take the chance on recommending it..., not as the single solution

to

> everything, but as something that is known to work quite well for a

> number of things, especially the digestion, although I can't

promise

> anything. One should start with a small dose and increase it over a

> week or so, to avoid diarrhea (spelling?). One can take it with

water

> or some other juice because of the taste. Here's a link to a

research

> report, which mentions " gastrointestinal motility " :

> http://wholeleaf.com/aloeverainfo/aloeveraoralconsumption.html

>

> As for anxiety, this supposedly has a negative effect on various

> physical things, but I guess you know that too well already.

>

> -- Helge in Norway

>

>

[Guest guest]

In a message dated 08/12/2001 2:04:50 PM Central Daylight Time,

simprl@... writes:

> I apologize for the length of the post, but would appreciate any

> advice/suggestions you can offer.

>

> Thank you,

> Tessa

>

Dear Tessa, You have certainly come to the correct place for help.

The very first thing to do when having a health problem is clean the colon

and you have listed the many ways, whether colonics or programs like Arise

and Shine or Sonnes or a combination or cleansers/colonics/enemas.

When the bowels are open to allow the removal of poisons we have

accumualted, then we should do mega nutrition in the way

of good healthful foods which should include green phytofoods, fruit and

vegetable juicing and things of this nature.

Our bodies are made to accept the good nutrition over the bad, SO

when we start on this new path to health the cells take in the new

good things and dump the bad. Just think, trillions of cells dumping

stored garbage. This is the reason for drinking lots good water to assist

in the body ridding itself of these.

Nutrition, exercise, water, sunshine, fresh air, rest, staying away from the

harmful things and trust in Divine Power will make us much healthier

people.........one day at a time.

To good health!

Edith

[Guest guest]

Dear Tessa,

Please excuse me for giving some advice that is not really

what you asked about: I would encourage you to do a heavy

metals test (it is a hair test) on yourself. I recently

posted a rather lengthy email with info on how to go about

this. (I can proabably find the post number if

needed.) I am currently doing mercury detox on myself, so I

read a GREAT DEAL about metal poisoning. I have recently

read a couple of emails about people with VERY DRAMATIC

improvements of fibro through merc detox (which means both

amalgam filling replacement and then detoxing the body of

stored mercury). So, that is fresh in mind for me. Mercury

poisoning can cause a number of autoimmune diseases.

As for the enemas, colemas and colonics:

I've had 2 colonics and the operator stayed in the room

the whole time. Am I misunderstanding you? Having the

person leave sounds weird to me.

As for enemas, or colemas for that matter, I would recommend

that you buy a plain old basic enema bag --or any other

thing you want--- and then make it a project to get comfortable

with using it. You know, take some time and try it out.

Try it again the next day. Read a book. Try a different

position, or more or less water. Try to make it something

familiar instead of something foreign. Give it some

time. One of the major

advantages of enemas is you do them yourself, so you have

LOTS of leeway in how to do it. You can add stuff to the

water, you can do one, you can do many, you can wait

in between then do some more. You can do it at home,

with music, while reading a book. I'm not sure if I'm

really saying what I mean, but I hope the idea comes across

anyway. The colema people at " Colema boards of California "

have a video for $5 about how to set up a colema board.

This might be worthwhile just as grist for the mill while

you are investigating these things. I bought it for that

reason. 800-745-2446. One book I have that has a description

of how to do an enema (and several variations) is

" The Herbs of Life " by Tierra. I'm sure there are

lots of other books that would also talk about enemas.

That's just one I know off hand. Also my favorite herb

book--- it has directions for all kinds of basic procedures

in it, like how to give an enema, how to induce sweat, how

to apply an oil pack, how to use a poltice, etc. etc.

It sounds like you have some pretty serious stuff going on

so I would really advise that you go slow and CHECK HOW YOU

FEEL carefully. Pay attention. Okay, that is probably the

most obvious thing in the world, but there it is. I'd hate

to have you mess up your back from getting in a cramped

position or whatever.

The juicing sounds great--- the more the better on that

I have no idea what the best colon cleansing program is.

I use Dr Schulze stuff (800-HERBDOC for free literature)

and also homozon. I think both are good. I also really

like Dr Schulze and follow much of his advice in general

(with some exceptions). Hot and cold showers are terrific

for example! When I first heard his tapes I thought he

said a lot of stuff I'd heard before, but he " put it all

together " in a way that really made sense to me and that

was very very helpful and motivating to me.

okay, enough!

Moria

p.s. have you tried eating lots of fruit? Apricots, figs,

prunes......

At 07:03 PM 8/12/2001 -0000, you wrote:

>Hi! I'm new to this group and also to computers! I have Systemic

>Lupus, Fibromyalgia, Raynald's Syndrome, cea, failed back surgery

>that left me in a coma and on a respirator for 3 weeks, and

>on/and/off constipation. I've tried most of the " traditional "

>treatments and prescriptions (I'm currently on 5 different

>medications taken several times a day), and not getting any better.

>I have also tried accupuncture, IV's of nutrients, Reiki, and nothing

>seems to help much.

<snip>

>I'm confused about which colon cleansing procedures and products

>would be best. I e-mailed one colon hydrotherapist (not in my state

>but has a good website) and she suggested Arise and Shine or Sonnes,

>along with consistent hydrotherapy either in the form of colonics,

>colema or enemas. I know I would not do the colema. I was wondering

>about the two different types of colonics (the therapist I e-mailed

>described her techniques and they are different from the one I'm

>going to). My therapist has me start the procedure then she comes in

>and starts the machine and leaves. There is a buzzer that I can call

>for her and she also buzzes me periodically to see if I'm ok. These

>sessions are getting very expensive and I was wondering if they could

>be supplemented with enemas. I'm not real sure how that works or

>what goes in them, what the best equipment would be, etc. I've also

>read contradicting information. One souce says home enemas are less

>risky than colonics, and another source says the exact opposite. I

>am totally confused. I feel like the cleansing would be good for my

>conditions, especially after I check to make sure there's no drug

>interactions, but am really confused about the different types of

>hydrotherapy.

<snip>

[Guest guest]

In a message dated 8/12/01 2:04:58 PM Central Daylight Time, simprl@...

writes:

<< I feel like the cleansing would be good for my

conditions, especially after I check to make sure there's no drug

interactions, but am really confused about the different types of

hydrotherapy.

I apologize for the length of the post, but would appreciate any

advice/suggestions you can offer. >>

/X/X/X/X/X/X/ , in your case, with so many conditions to contend with,

I would say the " type " of hydrotherapy is less important than just making

sure you get some. Either closed or open will do a lot for you, and if you

can only get one in your area, the go with that. I do open, and my

therapist has stated on numerous occasions that most people think the open is

more comfortable than closed. However, plenty of others swear by the closed

and don't want the open. Again, if you have only one choice, I'd say do it,

whatever it is. For me, hydrotherapy has been the most direct and effective

method of getting my system moving again, of ridding myself of toxins, and of

helping my immune system to help myself. Good luck to you. A

[Guest guest]

> In a message dated 8/12/01 2:04:58 PM Central Daylight Time,

simprl@y...

> writes:

>

> << I feel like the cleansing would be good for my

> conditions, especially after I check to make sure there's no drug

> interactions, but am really confused about the different types of

> hydrotherapy.

>

> I apologize for the length of the post, but would appreciate any

> advice/suggestions you can offer. >>

>

> /X/X/X/X/X/X/ , in your case, with so many conditions to

contend with,

> I would say the " type " of hydrotherapy is less important than just

making

> sure you get some. Either closed or open will do a lot for you,

and if you

> can only get one in your area, the go with that. I do open, and

my

> therapist has stated on numerous occasions that most people think

the open is

> more comfortable than closed. However, plenty of others swear by

the closed

> and don't want the open. Again, if you have only one choice, I'd

say do it,

> whatever it is. For me, hydrotherapy has been the most direct and

effective

> method of getting my system moving again, of ridding myself of

toxins, and of

> helping my immune system to help myself. Good luck to you. A

Thanks for your input. I also believe the hydrotherapy will be

most beneficial. I appreciate any suggestions I can get. I had my

fourth colonic today. It didn't go quite as well as the previous

ones as the tube came out and I couldn't get it reinserted. I buzzed

the therapist and she did come and help me. She has been helpful in

answering my questions. I didn't feel too well afterward which has

not been the case previously, but I'm guessing that might be because

I'm at the stage where a lot of yucky stuff is finally being

dislodged?? Anyway, I see an MD next week who specializes in

integrative medicine so perhaps he can help out also. I don't know

whether to tell my Rhematologist (he treats the Lupus and

Fibromyalgia) about what I'm doing or not. He was very agreeable to

the Reiki and meditation (which I still do), but, of course, those

methods are not very invasive. Thanks again, Tessa

[Guest guest]

The body takes a long time to heal. But it does. Unfortunately, you

will likely go backwards through the illness and symptoms until you are

completely healed. This makes it tough to stick to, but don't quit or else

you will relapse even worse than before. Read the archived posts for this

group and you will find anything you want to know.

About never feeling full, eat as much as you want. As long as you are

following the diet rules, it doesn't really matter how much you eat.

Ken

-- New and confused

I have been recently diagnosed with Candidasis by my allergy clinic.

Athough they gave me some pamphlets on the subject and told me to read

The Yeast Connection book, I am still very confused. I have been doing

quite a bit of research and have become quite overwhelmed by it all. I

have been following the candida diet now for a month and can never

quite feel full. Some of my symptoms have begun to clear up but more

remain. I have been having trouble locating a doctor/specialist that

accepts insurance. Any suggestions/help?

[Guest guest]

hi new and confused. i had this candida for 10 years. i have tried everything

for it already and only found certain things that work. i am still battling

this thing but the good news is that i brought all my ailments from number 10

down to a 2. Number one is to drink 6 to 8 glasses of water a day( constantly

rid toxins). i ordered blessed herbs and i am almost finished wit the

cleansing. and one more thing very important also i learned from here, is to eat

garlic

raw, once a day.

Lee

[Guest guest]

>About never feeling full, eat as much as you want. As long as you

are

>following the diet rules, it doesn't really matter how much you eat.

>Ken

the thing about never feeling full is interesting. I was watching

the discovery channel last night and the whole thing was about

parasites in human bodies. One victim said that no matter how much

he would eat, he would never feel full. He was diagnosed having

worms. I forget which one. either tapeworm or hookworm. Alot of

people have these inside their bodies for years and dont even know

it. When you eat, all the vitamins and protein go to the

worms...while your left with the crappy toxins.

by the way..hows everybody doing? i havent posted on here in years..

I see were still all suffering. no cure yet..that suks.. Im thinkin

i have parasites.. what is the best and most recommended treatment

for this..herbs im guessing? oh brother..not more herbs..

I know something is eatin up at me. its either yeast or

parasites..or some sort of low grade virus/infection. Because i had

Psoriatic Arthritis for several years.. and then cured myself of

that by eating only vegetables for like 6 months.. that told me it

wasnt something genetic. and it was something viral that caused my

PA. But i still get tired whenever i eat. Yesterday, i was all

excited because i was going to have dinner with my sister who i

havent seen alot. As soon as i was halfway into eating, i felt so

dizzy, and tired, and slow.. bah , i hate it. make it end already.

[Guest guest]

Thanks for the info. I do notice I feel better if I

drink lots and lots of water, but as far as eating raw

garlic....YEWWWW!!!! I have taken garlic tablets when

my stomache has been really upset and it seems to work

fine. I think I'll stick with that.

--- oceanlust718@... wrote:

> hi new and confused. i had this candida for 10

> years. i have tried everything

> for it already and only found certain things that

> work. i am still battling

> this thing but the good news is that i brought all

> my ailments from number 10

> down to a 2. Number one is to drink 6 to 8 glasses

> of water a day( constantly

> rid toxins). i ordered blessed herbs and i am almost

> finished wit the

> cleansing. and one more thing very important also i

> learned from here, is to eat garlic

> raw, once a day.

>

> Lee

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Have you tried a parasite cleanse? I found that did wonders for me. Check out

the one on curezone or just buy one that's already done up for you at the herbal

store that has all the stuff in it mentioned on curezone.

newjerseyy23 <newjersey23@...> wrote:>About never feeling full, eat as

much as you want. As long as you

are

>following the diet rules, it doesn't really matter how much you eat.

>Ken

the thing about never feeling full is interesting. I was watching

the discovery channel last night and the whole thing was about

parasites in human bodies. One victim said that no matter how much

he would eat, he would never feel full. He was diagnosed having

worms. I forget which one. either tapeworm or hookworm. Alot of

people have these inside their bodies for years and dont even know

it. When you eat, all the vitamins and protein go to the

worms...while your left with the crappy toxins.

by the way..hows everybody doing? i havent posted on here in years..

I see were still all suffering. no cure yet..that suks.. Im thinkin

i have parasites.. what is the best and most recommended treatment

for this..herbs im guessing? oh brother..not more herbs..

I know something is eatin up at me. its either yeast or

parasites..or some sort of low grade virus/infection. Because i had

Psoriatic Arthritis for several years.. and then cured myself of

that by eating only vegetables for like 6 months.. that told me it

wasnt something genetic. and it was something viral that caused my

PA. But i still get tired whenever i eat. Yesterday, i was all

excited because i was going to have dinner with my sister who i

havent seen alot. As soon as i was halfway into eating, i felt so

dizzy, and tired, and slow.. bah , i hate it. make it end already.

[Guest guest]

>Have you tried a parasite cleanse? I found that did wonders for me. Check

>out the one on curezone or just buy one that's already done up for you at

>the herbal >store that has all the stuff in it mentioned on curezone.

Is there a certain parasite cleanse that works for all? Also, is there one

that is more recommended then others here? the last thing i want to do is

waste my money on 10 different " parasite cleanse " supplements. There are so

many crooks out there its ridiculous.

[Guest guest]

You can get a list of doctors near (in some cases within a few hundred

miles) of you from the Great Smokies Diagnostic Laboratories. If all

else fails you can pay for tests and treatment yourself, I did. A few

hundred bucks and I was cured. See my message to Emma. I got most of

my lamisil from Canada, RxNorth and another pharmacy. Good Luck.

Rick

P.S. My horrible allergies are gone!

>

> I have been recently diagnosed with Candidasis by my allergy clinic.

> Athough they gave me some pamphlets on the subject and told me to read

> The Yeast Connection book, I am still very confused. I have been doing

> quite a bit of research and have become quite overwhelmed by it all. I

> have been following the candida diet now for a month and can never

> quite feel full. Some of my symptoms have begun to clear up but more

> remain. I have been having trouble locating a doctor/specialist that

> accepts insurance. Any suggestions/help?

>

[Guest guest]

See my message to Emma. Rick

>

> hi new and confused. i had this candida for 10 years. i have tried

everything

> for it already and only found certain things that work. i am still

battling

> this thing but the good news is that i brought all my ailments from

number 10

> down to a 2. Number one is to drink 6 to 8 glasses of water a day(

constantly

> rid toxins). i ordered blessed herbs and i am almost finished wit the

> cleansing. and one more thing very important also i learned from

here, is to eat garlic

> raw, once a day.

>

> Lee

>

>

>

[Guest guest]

Vulvodina in woman is usually, not always, but usually caused by

bicycle riding. I read one case where a woman had it with lyme. It

would not surprise me the vulvodynia were a side effect of the lyme.

Sounds like you have other lyme symptoms as well. This disease can

effects the whole body, from head to toe. Inside and out. Whats

important is your IgM confirmed lyme disease and hopefully you will

get relief from your great discomfort with treatment. Are you on any

kind of treatment? Do you have a lyme savvy DR? Maybe we can help you

find one in your area.

>

> My name is sarah, I ws just diagnosed with Lyme disease, after dealing

> with unrelenting symtpoms over the last year....I actually had a

> positive IgM and negative IgG with igenex.

>

> my main complaint was diagnosed as vulvodynia, but I am not finding

> that is commonly a misdiagnosis , and lyme is the cause...

>

> can anyone cofirm this???

>

> Im scared and suffering miserably.

>

> thank you

>

>

[Guest guest]

,

I have VVS at part of my symptoms with Lyme. I went for over a year trying

to figure out the source of the pain. According to several LLMDs I have

seen the bacterium eats away at the nerve sheath and causes inflammation

and thus pain. You have to find a really good doctor that uses really good

labs, so you know all the infections you may have. For example Chlamydia

pneumonia and Strep can be in the gu area and any activated viruses will do

the same. As you are treated for Lyme and other infections the pain will

start to lessen. Unfortunately it takes a long time. If you need a good

doctor for this type of pain email me off-line.

At 01:16 AM 9/17/2006, you wrote:

>Vulvodina in woman is usually, not always, but usually caused by

>bicycle riding. I read one case where a woman had it with lyme. It

>would not surprise me the vulvodynia were a side effect of the lyme.

>Sounds like you have other lyme symptoms as well. This disease can

>effects the whole body, from head to toe. Inside and out. Whats

>important is your IgM confirmed lyme disease and hopefully you will

>get relief from your great discomfort with treatment. Are you on any

>kind of treatment? Do you have a lyme savvy DR? Maybe we can help you

>find one in your area.

>

>

> >

> > My name is sarah, I ws just diagnosed with Lyme disease, after dealing

> > with unrelenting symtpoms over the last year....I actually had a

> > positive IgM and negative IgG with igenex.

> >

> > my main complaint was diagnosed as vulvodynia, but I am not finding

> > that is commonly a misdiagnosis , and lyme is the cause...

> >

> > can anyone cofirm this???

> >

> > Im scared and suffering miserably.

> >

> > thank you

> >

> >

>

>

[Guest guest]

Lizzie, thanks for your reply. I actually am not treating yet. I am

working with someone by the name of doctor Metzger in california. So

I have no clue what I will be doing...I am new to this Lyme stuff.

By any means, I want to get well. I she said she has had women come

in with vuvlodynia and it ended up being lyme. Ive had this horrible

pain for 18 months now, non stop. practically bed ridden from it.

and Im 30 years old.

>

> Vulvodina in woman is usually, not always, but usually caused by

> bicycle riding. I read one case where a woman had it with lyme. It

> would not surprise me the vulvodynia were a side effect of the

lyme.

> Sounds like you have other lyme symptoms as well. This disease can

> effects the whole body, from head to toe. Inside and out. Whats

> important is your IgM confirmed lyme disease and hopefully you will

> get relief from your great discomfort with treatment. Are you on

any

> kind of treatment? Do you have a lyme savvy DR? Maybe we can help

you

> find one in your area.

>

>

[Guest guest]

,

I also live in CA. I may be able to help you find a great lyme savvy

DR, we call them LLMD's (lyme literate MD.)I have a wonderful, amazing

llmd woman DR and would be happy to give you her #. Send me a private

message. I think I can help you. I have heard that vulvodynia is

really painful, sharp pains in such a sensative area. I hope you saw

the other response from the woman who had it with lyme. You are not

alone. Let me know what I can do to help.....Lizzie

> >

> > Vulvodina in woman is usually, not always, but usually caused by

> > bicycle riding. I read one case where a woman had it with lyme. It

> > would not surprise me the vulvodynia were a side effect of the

> lyme.

> > Sounds like you have other lyme symptoms as well. This disease can

> > effects the whole body, from head to toe. Inside and out. Whats

> > important is your IgM confirmed lyme disease and hopefully you will

> > get relief from your great discomfort with treatment. Are you on

> any

> > kind of treatment? Do you have a lyme savvy DR? Maybe we can help

> you

> > find one in your area.

> >

> >

>

[Guest guest]

Stormy,

Welcome! I'm sorry for the circumstances that bring you here, though!

I don't know if anything I can say will be of any help, except maybe

to let you know that you're not alone....so I'll share a bit of my story.

Although this is a group focused on diseases of the liver, many of us

have *multiple* autoimmune diseases, along with related issues such as

fibromyalgia. As it turns out, if you have one autoimmune disease, you

are at a much greater risk of developing more of them.

Many of the symptoms you're describing sound SO familiar to me. I've

had asthma, psoriasis, and Hashimoto's thyroiditis for most of my life

(all of which are autoimmune diseases), and just this past year,

within a 6 month period, I was diagnosed with fibromyalgia, cubital

and tarsal tunnel (plus other pinched nerves), rheumatoid arthritis,

autoimmune hepatitis and celiac disease. Talk about too much in too

short a time!!

For me, life got worse for a while before it got better...I take so

many medications now, including prednisone and Imuran to suppress my

immune system. My pain issues worsened until I actually ended up in a

wheelchair (still need it). And I spent enormous amounts of time on

the Internet trying to figure everything out.

Without going into a long complicated medical thesis, some of the

latest, cutting-edge research suggests that celiac disease literally

" opens the door " for other autoimmune diseases. Even though it was my

very last diagnosis, I'm convinced I've had it practically all my

life. For all those years the doctors just told me that all my

gastrointestinal problems were due to IBS, until I stopped eating

gluten and found the real culprit!

I bring this up because you mentioned that you are going to have an

endoscopy. Are they planning to biopsy your small intestine at that

time? That's the standard way to test for celiac disease.

Not that I hope you have it, but I know that as soon as I cut gluten

out of my diet, I started to feel better...I'm not falling asleep in

my office at work anymore!

BTW, I too am 53, married, and allergic to cats. Although I have 4

biological children (all adult, 3 daughters, 1 son) plus 2 adopted

children under the age of four (my biological grandchildren).

In any case, I'm glad you found this group and I wish you the best of

luck on your journey towards healing!

Take care,

JoAnn

[Guest guest]

Stormy, what a stunning story. Made me think of a book all should have a

copy of, Dr. Palmer's Guide to Hepatitis & Liver Disease. It covers

all liver diseases, and I refer to it frequently. Dr. Palmer also has a

website, www.liverdisease.com. To read about NASH, go to

http://www.liverdisease.com/nonalcoholicfattyliver_hepatitis.html.

There is also information about viral hepatitis, PBC, AIH, PSC, and many

other subjects and topics.

Good luck to all struggling with AI liver diseases. It is quite the

journey, but to be knowledgeable is the first and most important step, to be

proactive is the second.

Kay, TX, 59yo, AIH 1995/AMA-neg. PBC dx stage 2, 1999

[Guest guest]

Hello guys. I'm new to this site... and to this condition. My doctor recently

perscribed 5mg/day of Androgel for me based on my sustained low T level. Over

the past year, it has ranged between 170-185 ng/dL. My TSH 3rd Gen level is

1.665 ulU/ml (I'm not quite sure what this is). I'm not sure of the cause, but

I was only born with one teste, could this be a potential factor? I'm a little

confused because everything that I've read on this site (as well as the Androgel

site) indicates that T levels under 300-400 ng/dL should be treated; however, my

lab results (from two seperate labs) indicate that the normal range is 175-780

ng/dL... a much lower range. I've only been on Androgel for a few days, but I

haven't noticed any difference whatsoever.

I'm being treated by a general practice doctor (who's great), is there anything

else that I should consider or any ideas that I should raise with him? Again,

he recently perscribed Androgel, but told me to come back for a follow-up visit

in a couple months. Shouldn't I have some follow-up bloodwork after 3-4 weeks

to see how the Androgel is affecting me?

I'm a 39 year-old male who excercises regularly. Approx four years ago, my body

seemed to fall off a cliff. I gained a significant amount of fat (approx 60

pounds), and currently weigh 260 lbs (I'm 5-10 " ). I developed all the basic

cues for low T: low energy, lack of concentration, low sex drive, etc... I've

even shrunk an inch in height. Over the recent years, every time I begin a

diet/excercise regime, I get sick after a couple weeks... very frustrating. All

my other bloodwork (thyroid, glucose, etc) appears to be fine.

- O.

[Guest guest]

I am in a similar situation. My Canadian Endo put me on androgel 5G a day and

said to come back in 3 months. My initial range is just inside the low end of

the so called " Normal Range " . When I use the gel (I have been on it 7 days now)

I can feel it in the genitals and throughout my body. I haven't had morning

wood for a couple of years now but with the gel I am getting a weak erection in

the morning.

The Doc isn't going to test me in 2 weeks as suggested here but I can get tested

in the US if I go on my own pay for it myself. I am not sure if I should get

this 2 week test done or not. The gel seems to be having an effect and I would

notice if the effect was reduced and if the effect slowed down I suppose I could

go to the endo before 3 months but I dont know what good that would do.

Any one got any experiences or ideas about this?

>

> Hello guys. I'm new to this site... and to this condition. My doctor

recently perscribed 5mg/day of Androgel for me based on my sustained low T

level. Over the past year, it has ranged between 170-185 ng/dL. My TSH 3rd Gen

level is 1.665 ulU/ml (I'm not quite sure what this is). I'm not sure of the

cause, but I was only born with one teste, could this be a potential factor?

I'm a little confused because everything that I've read on this site (as well as

the Androgel site) indicates that T levels under 300-400 ng/dL should be

treated; however, my lab results (from two seperate labs) indicate that the

normal range is 175-780 ng/dL... a much lower range. I've only been on Androgel

for a few days, but I haven't noticed any difference whatsoever.

>

> I'm being treated by a general practice doctor (who's great), is there

anything else that I should consider or any ideas that I should raise with him?

Again, he recently perscribed Androgel, but told me to come back for a follow-up

visit in a couple months. Shouldn't I have some follow-up bloodwork after 3-4

weeks to see how the Androgel is affecting me?

>

> I'm a 39 year-old male who excercises regularly. Approx four years ago, my

body seemed to fall off a cliff. I gained a significant amount of fat (approx

60 pounds), and currently weigh 260 lbs (I'm 5-10 " ). I developed all the basic

cues for low T: low energy, lack of concentration, low sex drive, etc... I've

even shrunk an inch in height. Over the recent years, every time I begin a

diet/excercise regime, I get sick after a couple weeks... very frustrating. All

my other bloodwork (thyroid, glucose, etc) appears to be fine.

>

> - O.

>