Hi

[Guest guest]

Hi Ginni!

Welcome co the list, I hope you find many who have walked a mile in your

shoes!

Here is an article which may help you a bit:

EHLERS-DANLOS SYNDROME; The Role of Collagen in the Eye

Authors:

Kirschbaum OD

Private Practice Optometrist

Diablo Optometry

Alamo, California

S. R. Curry LPT/RNC

EDNF Board Member & Secretary of the Northern California EDNF Branch

Stayce has Vascular EDS and Hemophilia - Factor VII

Bayside, California

Maggie Buckley

EDNF Board Member & President of the Northern California EDNF Branch

Maggie has Hypermobile EDS

Walnut Creek, California

ABSTRACT

Ehlers Danlos syndrome (EDS) is a group of heritable connective tissue

disorders characterized by hyperextensible skin, hypermobile joints, and

connective tissue fragility.1 These symptoms are believed to be the result

of gene mutations affecting the structure or assembly of different collagen

types. The eye is made up of 80% collagen. Therefore, it is recommended

that individuals with EDS be seen at least annually by an optometrist or

ophthalmologist for a full evaluation of their eye health. This article

attempts to explain common ophthalmologic findings and their symptoms. The

symptoms discussed in this article occur in the normal population and are

not exclusive to EDS. However, due to the involvement of collagen and its

role in the eye, individuals with EDS may have a higher incidence of

ophthalmic implications, especially in the Kyphoscoliosis Type of EDS

(formerly known as Type VI).1 Additional research in this area is needed.

This article is based on two presentations by Dr. Kirschbaum to

the Northern California Branch of the Ehlers Danlos National Foundation.

ROLE OF COLLAGEN IN THE EYE

The human eye is primarily made up of connective tissue. The sclera (the

tissue that makes up the white of the eye) is all collagen and represents

80% of the eye. The cornea (clear tissue at the front of the eye) is mostly

collagen as well.4 Since EDS is a collagen defect and the eye is primarily

made of collagen, individuals with EDS in particular may experience ocular

changes.1, 4 An optometrist or ophthalmologist should be consulted for a

comprehensive eye exam to establish the patient's baseline medical data.

This first exam should include a complete history and examination of all

parts of the eye. Dilation of the pupil will allow for thorough examination

of the internal parts of the eye. With annual follow-up exams, an eye

physician should be able to identify any ocular changes. The presence and

nature of any pain, discharge, redness or changes in visual acuity require

further evaluation. Any disturbance in vision demands an explanation. If

retinal changes occur, follow up frequency should be at least every

six-months. For floaters (floating spots behind the lens of the eye,

usually harmless and not visible during normal visual activities) suggested

follow-up frequency is every three months. Patients experiencing flashes of

light should report this immediately to their primary eye care physician.

Many factors may effect ocular changes; genetics, nutrition, computer usage,

environment and overwork. The strength and sensitivity of the collagen in

the eye appear to be responsive to overuse. Overuse or overworking of the

eyes can be defined as excessive reading, television viewing, or computer

screen use without blinking or looking away every few seconds and taking a

break from the activity after one hour. While reading, that would translate

into looking away after every page and putting the material down after an

hour to focus on another activity for a few minutes.

Many articles identify ophthalmologic findings of individuals or small

groups of patients with an Ehlers-Danlos syndrome diagnosis.1, 2, 3, 4, 5, 6

Findings identified in these articles are:

Epicanthal Folds

Keratoconus

High Myopia

Blue Sclera

Lens Subluxation

Retinal Detachments

Angioid Streaks

Strabismus

Carotid-cavernous sinus fistulas

Photophobia

Posterior Staphyloma

Glaucoma

Cataracts

Macular Degeneration

Dry Eyes

Note that these findings also occur in the normal population and that no

research to date compares their occurrence within the general population to

that of individuals with EDS. Major diagnostic criteria for the

Kyphoscoliosis Type of EDS include scleral fragility and ocular rupture.1

EPICANTHAL FOLDS

An epicanthal fold is an extra fold of skin covering the inner corner of the

eye. They are caused by the hyperextensibility of or an excess of eyelid

skin. The excess skin causes a fold in the area closest to the nose.

Epicanthal folds are commonly found in the Classical Type of EDS4 and people

of Asian ancestry.

KERATOCONUS

The cornea is the clear membrane at the front of the eyeball. Keratoconus

is a type of abnormal corneal curvature that occurs when the cornea becomes

cone-shaped.2, 4 It usually happens during the second or third decade of

life and will cause images to be distorted. It is believed to be more

common amongst people with lots of allergies (atopic). Gas permeable

contact lenses are helpful. As a last resort, corneal transplant is

required. Keratoconus can lead to blindness.2, 3

HIGH MYOPIA

High Myopia is characterized by nearsightedness where items in the distance

become blurry. The nearsightedness results because the eye is too long or

the cornea is too steep so the focus point of light rays entering the pupil

is in front of the retina. Corrective lenses are an effective treatment for

high myopia.2, 3

BLUE SCLERA

The sclera is the white of the eye or the thick outer coat of the eyeball.

=20A bluish appearance is attributed to a thinning of the sclera. The

thinning is most noticeable at the limbus (where the cornea meets the white

of the eye) thus creating the a blue " halo " at the limbus. The blue halo

becomes less prominent with aging and the normal decrease in scleral

transparency. Blue sclera is considered to be a prominent feature of

osteogenesis imperfecta and EDS.3, 4, 6

LENS SUBLUXATION

The lens, located behind the pupil, bends light rays as they enter the eye

so that they focus on the retina in the back of the eyeball. The signals

travel to the brain where they are translated into images. The lens is

suspended by ligaments and may sublux, or come loose, sometimes falling into

the posterior of the eye, causing an inability for light to focus in the

eye. The lens is made up of epithelial cells that grow in many layers, like

an onion. It grows throughout a person's lifetime. With normal aging,

thickness and loss of resiliency can cause focusing to be more sluggish.

This is known as presbyopia, or the need for magnifying glasses after age

40.2, 3, 4

RETINAL DETACHMENTS

The retina is the innermost layer of the eye upon which light rays are

focused. As the eye lengthens or expands, the retina is more loosely

attached than in infancy. A piece of the retina may detach itself and be

trapped within the vitreous or the inside gel of the eye. A retinal

detachment may be preceded by a shower of sparks, floaters, or lightening

flashes then a 'curtain' falls across the visual field. THIS IS AN

EMERGENCY. Floaters are trapped debris, usually a clumping of protein, in

the vitreous gel of the eye. Most people have floaters which prove to be

harmless, but they should always be reported to the eye care professional to

be certain.3, 4, 6

ANGIOID STREAKS

Angioid streaks are cracks in the Bruch's membrane, the basement or

" anchoring " membrane of the retina. The " streaks " usually radiate from the

optic disc and appear as changes in the color of the retina. Through aging,

the Bruch's membrane thickens, but if there is a defect in any of the

collagen layers of the membrane, streaks appear. It is as if one dipped an

uninflated balloon in paint and let it dry. As the balloon is inflated,

cracks appear in the paint. Angioid streaks are common to many systemic

disorders including Sickle cell, epilepsy, Marfan syndrome, Paget's disease,

and EDS.3, 4, 6

STRABISMUS

A strabismus occurs when the resting eye is in a position other than at the

center. A group of six muscles hold the eye in place and enable it to move

around. Both eyes normally move in concert with one another. If any one of

the muscles is weaker than the others, the eye will drift or cross. Loose

tendons and ligaments around the eye create hard working muscles that get

tired. Over active muscles will not work efficiently. Multifocal lenses

(bifocals or trifocals) can help to balance the muscle activity associated

with changing focus from faraway to close up and back to distance, as when

driving. Prism in prescription glasses can be helpful in directing light to

the correct spot on the retina. Avoid intentionally crossing the eye or

moving one eye out of synch from the other. Surgical repair of a strabismus

may be further complicated because sutures are difficult to place in thinned

sclera. Surgical repair may not have lasting effects if the cause is a

non-uniform elasticity of the tendons and ligaments associated with the eye

muscles.3, 4

CAROTID-CAVERNOUS SINUS FISTULAS

A carotid-cavernous sinus fistula is very much like an aneurysm. It is the

rupture of a blood vessel which bleeds into a sinus cavity and/or some part

of the eye. The blood flow can cause serious structural damage to the

eye.=20 THIS IS AN EMERGENCY. Individuals report hearing their pulse in

their temple and having a frontal headache on one side or the other. A

doctor will look for it by placing a stethoscope over the temple and

listening for a 'whooshing' sound. Carotid-cavernous sinus fistulas

commonly found in Vascular, formerly called Type IV EDS, but all types and

the normal population are susceptible as well.3, 4, 5

PHOTOPHOBIA

Photophobia is an intolerance to light or glare. Light-eyed people are more

susceptible to this kind of glare. It may re relieved by tinted,

glare-resistant or dark UV protected glasses. Sudden photophobia should be

reported to an eye care professional immediately.

POSTERIOR STAPHYLOMA

Posterior staphyloma is a stretching or distortion in the back of the eye.

Scleral tissue " bubbles " which results in a significant myopic shift

(increased nearsightedness.)4

GLAUCOMA

Glaucoma is an increase or change in the intraocular pressure which leads to

vision impairment ranging from slight changes to blindness, as well as a

progressive loss of peripheral vision. Glaucoma is irreversible if it is

identified too late in the progression of the symptoms. It is believed to

be caused by nearsightedness, heredity, injury, diabetes, vascular and

mechanical irregularities.2, 3, 4

CATARACTS

A cataract is a cloudy lens. The lens tissue discolors naturally as a

result of sclerosis, or hardening, as one matures. It becomes more golden

in color as it thickens which also decreases vision. Premature cataracts

can occur from UV exposure, diabetes or nutritional factors.3, 4

MACULAR DEGENERATION

Macular degeneration occurs when the macula atrophies causing pigment

changes and a decrease in keen vision to occur. The macula, the strongest

part of the retina, contains the highest concentration of vision receptors.

There are two kinds of macular degeneration: wet and dry. In wet macular

degeneration the underlying retinal blood vessels break or leak. Dry

macular degeneration is a deterioration or " wearing out " of the retina.

High risk factors include chronic UV exposure, smoking, inadequate

nutrition, and heredity.3, 4

DRY EYES

Dry eyes result when the normal coating of tears on the eye is diminished.

This can result if one doesn't blink regularly or under dry environmental

conditions. Dry eyes should not be treated with bottled eye drops that have

a preservative in them. Instead, drink plenty of water, blink frequently,

use a warm compress on eyes and/or use eye drops that do not have a

preservative. Preservative free eye drops come in packages of single use

containers.3

KYPHOSCOLIOSIS TYPE EDS

Kyphoscoliosis Type EDS is caused by a reduction in the normal activity of

the enzyme lysyl hydroxylase which is required for the assembly of collagen

fibrils. This type of EDS may include the progressive loss of pigment

tissue in the eye. Improper drainage of the fluid of the eye may lead to

increased intraocular pressure which promotes the incidence of glaucoma.

Scleral fragility and ocular rupture are possible with this type of EDS.1,

3, 4

SUMMARY

Since the eye is primarily collagen, anyone with a preexisting collagen

disorder or defect must pay particular attention to any and all ocular

changes. A yearly eye exam is as important as a yearly physical. The

presence and nature of any pain, discharge, redness or any changes in visual

acuity require an immediate evaluation. Begin with a thorough medical eye

exam performed by an optometrist or ophthalmologist to establish a baseline

eye health profile. If changes in vision or eye health occur, consult your

eyecare professional as soon as possible.

BIBLIOGRAPHY

1 Beighton P, De Paepe A, Steinmann B, Tsipouras P, Wenstrup RJ.

" Ehlers-Danlos Syndromes: Revised Nosology, Villefranche, 1997, " The America

Journal of Medical Genetics, 77 (April 1998): pp. 31 - 37.

2 Cameron, A. " Corneal Abnormalities in Ehlers-Danlos Syndrome Type

VI, " Cornea, Volume 12, Number 1 (January 1993): pp. 54 - 59.

3 Gurwood A, Mastrangelo DL. " Understanding Angioid Streaks, " Journal of

the American Optometric Association, Volume 68, Number 5 (May 1997): pp.

309 -324.

4 Mannis MJ, Macsai MS, Huntley AC. Eye and Skin Disease, Lippincott-Raven

Publishers, Philadelphia 1996

5 Pollack JS, Custer PL, Hart WM, ME, Fitzpatrick MM. " Ocular

Complications in Ehlers-Danlos Syndrome Type IV, " Arch Opthalmol, Volume 115

(March 1997): pp. 416 - 419.

6 Wilkinson CP, Rice TA. Michel's Retinal Detachment. Second Edition, St.

Louis, Mosby, 1997.

[Guest guest]

Welcome to the CEDA family, Ginni.

I don't have glaucoma, but I have a lot of other things like, M.E.

fibromyalgia, chronic fatigue, HEDS and M.S. I am 56 and my daughter,

Ann is 24 and she has HEDS too.

Lovely to have you aboard.

Love,

Lilian,

In Scotland.

z13gin@... wrote:

>

> Hi my name is Ginni and I am 27yrs old. I was told that I had EDS

> about 2 1/2 yrs ago, my health at this point in time seems to be

> getting worse. I was recently dx with Glaucoma and would be very

> interested in knowing if anyone else has Glaucoma.

> Thanks,

> ginni

>

>

>

[Guest guest]

Hi Amy,

Welcome to the family.

My daughter, 15 yr.old, has HEDS and is in pool therapy once a week.

It has been the safest way for her to exercise. They have a rotation of

exercises that she does in shoulder deep water. They have styroform

barbells and very light ankle weights for her to workout with. Kate hase

problems remembering when she is hyperextending but once she gets control

of that the water work is very good for her.

The one she enjoys the most is a large floater board that is held under the

water by two OTs and than she balances herself on the middle. They have

several positions in which she sits or kneels and as they gently move the

board she has to balance herself using her back and stomach muscles.

I think there are some suggestions for pool therapy on the national sites?

Glad to have you here,

Jean

----------

| From: Pizzas81@...

| To: ceda

| Subject: Hi

| Date: Monday, May 21, 2001 12:59 AM

|

| Hi. I'm new to the list. My name is Amy Hoffman and I'm 20. I was

| diagnosed on May 4 as having EDS type 3 or hypermobility. I have

| joint pain in all joints and am weak especially in my back muscles.

| My ankles turn causing me to fall and my knees will buckle. I also

| have Mitral Valve Prolapse and GERD.I am curremtly in physical

| therapy and watertherapy. I will be starting to train with a personal

| trainer on Monday to try and build muscle. Has anyone else tried

| physical or water therapy. If so, did it help and what kinds of

| things did you try?

| Thanks

| Amy

|

|

|

[Guest guest]

Hi Amy H. Welcome to our world-wide CEDA family. I am Lilian, and my

daughter, Ann and I both have EDS hypermobile type and I have vascular

problems too. Currently I am having a flare up of viral arthritis so

have had to cut my swimming to a minimum but hope to take it back up

shortly.

Love and hugs,

Lilian,

In Scotland.

[Guest guest]

Welcome to the group .

Pierre

Moderator

P.S. My remark about my neph being good for 3 questions was

tongue-in-cheek.

Hi

> Hi,

>

> I just came across this news group the other day and thought I'd say Hi

to everyone. My name is , I'm 32 and was diagnosed with an aggressive

form of IGAN in 8/2001 via a kidney biopsy. There were a couple of

questions that people asked that I thought I'd give my opinion to. I

believe Alison was asking about fish oil and whether or not she should try

it. I've been on 12g/day of fish oil since Aug 2001 and have noticed no

negative side effects. Though initially when I started I did have a problem

with it repeating on me. Currently I've been told that I'll be on it for

at least 2 years. The only complaint I have with it is the cost. It gets a

little pricey. I tend to by the bottle that has 500 pills in it. It's a

little cheaper especially since where I'm from I can get it on sale the

first Mon and Tue of the month. The one concern I have with taking so much

fish oil is the possible mercury level that's in it. I'm trying to find

some information on that so if anyone has any info on that I'd appreciate

it... The other question that caught my eye was something about

prednisone -- sorry I didn't catch the name -- and that on 40mg they were on

the highest dose according to their doc but it wasn't helping them and

someone else replied they were on 60mg... I believe what is considered to

be the highest dosage is based on the person's weight, so 40mg may be the

highest for 1 person but not for another. In my case I was up to 80mg (I

was about 200pounds) and like this other person prednisone did not help me.

I've been tapered down to 5mg and am thankful that I'm off of it. I had a

lot of problems with it but the current results are that I feel like I've

gain a lot of weight and have loss a lot of muscle mass. Someone else

(perhaps the same person) was saying they're protein level kept going up

after the prednisone. I know for myself it seems whenever I get a cold my

level goes up and last month when I was hospitalized everything seemed to

shoot through the roof though it has stabalized again. I've been down the

cytoxan route as well and after 6 months of that I've come off of it and

have been switched to imuran. My last protein level was around 900mg at the

highest it was a little more than 4g. The problem I had with the cytoxan

(possibly they actually don't know why I got so bad) was I've become

extremely anemic -- so much so that while I was in the hospital they kept

running my blood through oncology because they can't explain why I'm so

anemic -- so now I'm on aranesp and iron supplements to help that. Besides

that I'm on the typical cholestrol and blood pressure lowering medicine

along with something to protect my stomach from all this medicine... I'm

currently investigating Ayurvidec Medicine and may seek an opinion from an

expert in that field. Has anyone gone that route? The only other comment I

have is that someone mentioned that their nephrologist is only good for 3

questions.... If it was me, I'd find a new nephrologist. I know my

nephrologist will speak to me for as long as l want, and I can ask him as

many questions as I'd like. He's never once rushed me through an

appointment and I've spent up to an hour with him. Of course that has it

drawbacks -- I've had appointments where I show up on time and I have to

wait around for a long time -- but it's worth it because I know he's

spending the time with someone else...

>

>

>

>

>

>

[Guest guest]

Hi ,

Thankyou for your very informative e-mail. I'm still collecting as much

information as I can about fish oil so that I'm well armed for when the

specialist next comes to town. I really appreciate the insight you have

given me.

Sorry if the are any weird typo's in this. My cat has just tumbled across

the keyboard and I can't see anything untoward but who knows what buttons he

has pressed!

Take care,

Ali.

" "

>Reply-To: iga-nephropathy

>To: <iga-nephropathy >

>Subject: Hi

>Date: Wed, 10 Apr 2002 11:02:50 -0400

>

>Hi,

>

> I just came across this news group the other day and thought I'd say Hi

>to everyone. My name is , I'm 32 and was diagnosed with an aggressive

>form of IGAN in 8/2001 via a kidney biopsy. There were a couple of

>questions that people asked that I thought I'd give my opinion to. I

>believe Alison was asking about fish oil and whether or not she should try

>it. I've been on 12g/day of fish oil since Aug 2001 and have noticed no

>negative side effects. Though initially when I started I did have a problem

>with it repeating on me. Currently I've been told that I'll be on it for

>at least 2 years. The only complaint I have with it is the cost. It gets

>a little pricey. I tend to by the bottle that has 500 pills in it. It's a

>little cheaper especially since where I'm from I can get it on sale the

>first Mon and Tue of the month. The one concern I have with taking so much

>fish oil is the possible mercury level that's in it. I'm trying to find

>some information on that so if anyone has any info on that I'd appreciate

>it... The other question that caught my eye was something about prednisone

>-- sorry I didn't catch the name -- and that on 40mg they were on the

>highest dose according to their doc but it wasn't helping them and someone

>else replied they were on 60mg... I believe what is considered to be the

>highest dosage is based on the person's weight, so 40mg may be the highest

>for 1 person but not for another. In my case I was up to 80mg (I was about

>200pounds) and like this other person prednisone did not help me. I've

>been tapered down to 5mg and am thankful that I'm off of it. I had a lot

>of problems with it but the current results are that I feel like I've gain

>a lot of weight and have loss a lot of muscle mass. Someone else (perhaps

>the same person) was saying they're protein level kept going up after the

>prednisone. I know for myself it seems whenever I get a cold my level goes

>up and last month when I was hospitalized everything seemed to shoot

>through the roof though it has stabalized again. I've been down the

>cytoxan route as well and after 6 months of that I've come off of it and

>have been switched to imuran. My last protein level was around 900mg at

>the highest it was a little more than 4g. The problem I had with the

>cytoxan (possibly they actually don't know why I got so bad) was I've

>become extremely anemic -- so much so that while I was in the hospital they

>kept running my blood through oncology because they can't explain why I'm

>so anemic -- so now I'm on aranesp and iron supplements to help that.

>Besides that I'm on the typical cholestrol and blood pressure lowering

>medicine along with something to protect my stomach from all this

>medicine... I'm currently investigating Ayurvidec Medicine and may seek an

>opinion from an expert in that field. Has anyone gone that route? The

>only other comment I have is that someone mentioned that their nephrologist

>is only good for 3 questions.... If it was me, I'd find a new nephrologist.

> I know my nephrologist will speak to me for as long as l want, and I can

>ask him as many questions as I'd like. He's never once rushed me through

>an appointment and I've spent up to an hour with him. Of course that has

>it drawbacks -- I've had appointments where I show up on time and I have to

>wait around for a long time -- but it's worth it because I know he's

>spending the time with someone else...

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I read a book called " Cleansing the body, mind and spirit " by Carolyn

Reuben. She mentioned different ways to clean body, like eatting

organic greens, sea weed, carbon, foot massage and a lot more. At

least I got some ideas. The only concern is if the kidney can endure

it. But I think it is better to get ride of these heavy mineral etc

out of our body, so that our system can run more correctly. If you're

interested, you can read the book, I borrowed it from library, it is

also on amazon. This may not be the new idea, but doesn't harm

reading. I like to get ideas from different resources and hope one

day I can figure out a cure...

Good luck.

April

> Hi,

>

> I just came across this news group the other day and thought I'd

say Hi to everyone. My name is , I'm 32 and was diagnosed with

an aggressive form of IGAN in 8/2001 via a kidney biopsy. There were

a couple of questions that people asked that I thought I'd give my

opinion to. I believe Alison was asking about fish oil and whether

or not she should try it. I've been on 12g/day of fish oil since Aug

2001 and have noticed no negative side effects. Though initially when

I started I did have a problem with it repeating on me. Currently

I've been told that I'll be on it for at least 2 years. The only

complaint I have with it is the cost. It gets a little pricey. I

tend to by the bottle that has 500 pills in it. It's a little

cheaper especially since where I'm from I can get it on sale the

first Mon and Tue of the month. The one concern I have with taking

so much fish oil is the possible mercury level that's in it. I'm

trying to find some information on that so if anyone has any info on

that I'd appreciate it... The other question that caught my eye was

something about prednisone -- sorry I didn't catch the name -- and

that on 40mg they were on the highest dose according to their doc but

it wasn't helping them and someone else replied they were on 60mg...

I believe what is considered to be the highest dosage is based on the

person's weight, so 40mg may be the highest for 1 person but not for

another. In my case I was up to 80mg (I was about 200pounds) and

like this other person prednisone did not help me. I've been tapered

down to 5mg and am thankful that I'm off of it. I had a lot of

problems with it but the current results are that I feel like I've

gain a lot of weight and have loss a lot of muscle mass. Someone

else (perhaps the same person) was saying they're protein level kept

going up after the prednisone. I know for myself it seems whenever I

get a cold my level goes up and last month when I was hospitalized

everything seemed to shoot through the roof though it has stabalized

again. I've been down the cytoxan route as well and after 6 months

of that I've come off of it and have been switched to imuran. My

last protein level was around 900mg at the highest it was a little

more than 4g. The problem I had with the cytoxan (possibly they

actually don't know why I got so bad) was I've become extremely

anemic -- so much so that while I was in the hospital they kept

running my blood through oncology because they can't explain why I'm

so anemic -- so now I'm on aranesp and iron supplements to help

that. Besides that I'm on the typical cholestrol and blood pressure

lowering medicine along with something to protect my stomach from all

this medicine... I'm currently investigating Ayurvidec Medicine and

may seek an opinion from an expert in that field. Has anyone gone

that route? The only other comment I have is that someone mentioned

that their nephrologist is only good for 3 questions.... If it was

me, I'd find a new nephrologist. I know my nephrologist will speak

to me for as long as l want, and I can ask him as many questions as

I'd like. He's never once rushed me through an appointment and I've

spent up to an hour with him. Of course that has it drawbacks --

I've had appointments where I show up on time and I have to wait

around for a long time -- but it's worth it because I know he's

spending the time with someone else...

>

>

>

>

>

>

[Guest guest]

Hi April,

Thanks for the info about that book. I'll have to check in my library to see

if they have it... I'm looking into Ayurvedic medicine to see if there's any

info on that side.... I received a reply from one of the staff members of the

doctor I contacted and was told the doctor has only treated 1 IGAN patient but

has success with other kidney diseases... I was told by them if I do wish to

pursue it that to make sure I see a Ayurvedic physician and not a Ayurvedic

practioner. I was also told to make sure that if I see someone that they have a

min. of 5 - 5 1/2 years of training in some specific university in India. The

doctor I had contacted is both a Ayurvedic physician as well as an MD internist

so I guess I have a little more interest in him then someone who is just

ayurvedic physician since he looks at both western and eastern medicine.... I

haven't decided if I'm going to try to make an appointment with him or not...

That web site (if you're interested is www.niam.com)

[Guest guest]

Hi! Hope everyone is doing well this evening. I haven't posted

anything lately because I have been very busy this past week going to

doctors, etc. By Friday I was coming down with bronchitis or

something of the sort but my primary care dr office would not return

my call. So I have been doing breathing treatments all weekend. In

fact, I went to bed on Friday night at 9:30 and woke up on Saturday

at 11:30am! I think I am warding it off now. I picked up a new CPAP

mask Thurs. and I am sleeping better. I think I will call that dr

again tomorrow.

I made my self stay in out of the cold because it really makes me

hurt when I breathe. Hopefully this coming week in Georgia the temps

will be back in the 50s.

I wish I knew some words to write that would help people feel better

or feel more positive. I have enjoyed reading the posts for the past

week very much. I have also added this group to my prayer list and I

pray for all of you every day. I know everybody is in different

stages with this " monster " and I am learning a lot from all of you.

Thank you all for the knowledge you add so we can deal with

this " monster "

Sincerely Jane IPF (Dec.1998)

[Guest guest]

Jane,

Hi! I too haven't posted much lately. I think I'm just feeling a little overwhelmed with everything that's going on in my life. I hope by now you've been in touch with your doctor and have had some help with how you're feeling. Please definitely stay out of the cold. I know that for me the cold makes it very hard for me to breathe. I didn't venture outside at all today. Our high topped out at about 15 degrees with 30 mile an hour winds. It was just crazy. I can't wait to move to North Carolina. It's coming up soon, just not soon enough to suit me!

Look after yourself!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Hi

Hi! Hope everyone is doing well this evening. I haven't posted anything lately because I have been very busy this past week going to doctors, etc. By Friday I was coming down with bronchitis or something of the sort but my primary care dr office would not return my call. So I have been doing breathing treatments all weekend. In fact, I went to bed on Friday night at 9:30 and woke up on Saturday at 11:30am! I think I am warding it off now. I picked up a new CPAP mask Thurs. and I am sleeping better. I think I will call that dr again tomorrow.I made my self stay in out of the cold because it really makes me hurt when I breathe. Hopefully this coming week in Georgia the temps will be back in the 50s. I wish I knew some words to write that would help people feel better or feel more positive. I have enjoyed reading the posts for the past week very much. I have also added this group to my prayer list and I

pray for all of you every day. I know everybody is in different stages with this "monster" and I am learning a lot from all of you. Thank you all for the knowledge you add so we can deal with this "monster"Sincerely Jane IPF (Dec.1998)

[Guest guest]

Hi Beth Where will you be moving to in N.C. ? I live in North

GEORGIA (Dalton). I just read this today and wanted to respond. I went

to the dr. in Chattanooga today and had a coughing attack all the way

there LOL! I worked with the bronchitis and was able to hold it off

this past weekend. Now I am coughing. My dr said it was the PF. He

gave me a prescription for augmentin and also gave me one for a

prednisone dose pack which he said I could wait until Thurs. to fill it

if I was still coughing. He said it was the only medicine that would

help coughing! Thank goodness my lungs were clear except for the lower

end crackles. The weather, though cloudy is very mild, 60 degrees today

and I am so glad. I can hardly wait to hear where you will be moving to!

Jane IPF (Dec. 1998)

>

> Jane,

> Hi! I too haven't posted much lately. I think I'm just feeling a

little overwhelmed with everything that's going on in my life. I hope by

now you've been in touch with your doctor and have had some help with

how you're feeling. Please definitely stay out of the cold. I know that

for me the cold makes it very hard for me to breathe. I didn't venture

outside at all today. Our high topped out at about 15 degrees with 30

mile an hour winds. It was just crazy. I can't wait to move to North

Carolina. It's coming up soon, just not soon enough to suit me!

> Look after yourself!

>

>

> Beth Fibrotic NSIP 06/06

>

> Don't try to explain it, just nod your head.

> Breathe in, breathe out. Move on. J. Buffett

>

>

>

> Hi

>

> Hi! Hope everyone is doing well this evening. I haven't posted

> anything lately because I have been very busy this past week going to

> doctors, etc. By Friday I was coming down with bronchitis or

> something of the sort but my primary care dr office would not return

> my call. So I have been doing breathing treatments all weekend. In

> fact, I went to bed on Friday night at 9:30 and woke up on Saturday

> at 11:30am! I think I am warding it off now. I picked up a new CPAP

> mask Thurs. and I am sleeping better. I think I will call that dr

> again tomorrow.

>

> I made my self stay in out of the cold because it really makes me

> hurt when I breathe. Hopefully this coming week in Georgia the temps

> will be back in the 50s.

>

> I wish I knew some words to write that would help people feel better

> or feel more positive. I have enjoyed reading the posts for the past

> week very much. I have also added this group to my prayer list and I

> pray for all of you every day. I know everybody is in different

> stages with this " monster " and I am learning a lot from all of you.

> Thank you all for the knowledge you add so we can deal with

> this " monster "

>

> Sincerely Jane IPF (Dec.1998)

>

[Guest guest]

Hi Jane,

I'm moving to the Durham, NC area. My sister Amy lives there with her husband and two little girls (4) and Gracie (3). I'm hoping to be down there before spring is over. I know that I can't do another NY winter. It will kill me. Believe me I know it gets cold down there but the difference is it doesn't get and STAY cold for weeks at a time without a break. The winters are somewhat shorter and milder. That's all I'm asking for!

If I'm not mistaken in Dalton, GA you are around 275 miles or so from where my son lives outside Boone, NC. Boone is in the western mountains of North Carolina. He's lived there for most of the last few years and it's unbelievably beautiful. I love to visit there, though the altitude makes it tough. I'm toying with the idea of going down there for Easter, maybe renting a cottage for a few days and cooking my son a nice big Easter dinner! It depends on how the finances start shaping up now that I'm getting disability.

Hopefully once I'm down in NC full time we can meet! Wouldn't that be fun?

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Hi>> Hi! Hope everyone is doing well this evening. I haven't posted> anything lately because I have been very busy this past week going to> doctors, etc. By Friday I was coming down with bronchitis or> something of the sort but my primary care dr office would not return> my call. So I have been doing breathing treatments all weekend. In> fact, I went to bed on Friday night at 9:30 and woke up on Saturday> at 11:30am! I think I am warding it off now. I picked up a new CPAP> mask Thurs. and I am sleeping better. I think I will call that dr> again tomorrow.>> I made my self stay in out of the cold because it really makes me> hurt when I breathe. Hopefully this coming week in Georgia the temps> will be back in the

50s.>> I wish I knew some words to write that would help people feel better> or feel more positive. I have enjoyed reading the posts for the past> week very much. I have also added this group to my prayer list and I> pray for all of you every day. I know everybody is in different> stages with this "monster" and I am learning a lot from all of you.> Thank you all for the knowledge you add so we can deal with> this "monster">> Sincerely Jane IPF (Dec.1998)>

[Guest guest]

Hi Beth! Hurry up and move down here it already feels like spring

today. Jane

> >

> > Jane,

> > Hi! I too haven't posted much lately. I think I'm just feeling a

> little overwhelmed with everything that's going on in my life. I hope

by

> now you've been in touch with your doctor and have had some help with

> how you're feeling. Please definitely stay out of the cold. I know

that

> for me the cold makes it very hard for me to breathe. I didn't venture

> outside at all today. Our high topped out at about 15 degrees with 30

> mile an hour winds. It was just crazy. I can't wait to move to North

> Carolina. It's coming up soon, just not soon enough to suit me!

> > Look after yourself!

> >

> >

> > Beth Fibrotic NSIP 06/06

> >

> > Don't try to explain it, just nod your head.

> > Breathe in, breathe out. Move on. J. Buffett

> >

> >

> >

> > Hi

> >

> > Hi! Hope everyone is doing well this evening. I haven't posted

> > anything lately because I have been very busy this past week going

to

> > doctors, etc. By Friday I was coming down with bronchitis or

> > something of the sort but my primary care dr office would not return

> > my call. So I have been doing breathing treatments all weekend. In

> > fact, I went to bed on Friday night at 9:30 and woke up on Saturday

> > at 11:30am! I think I am warding it off now. I picked up a new CPAP

> > mask Thurs. and I am sleeping better. I think I will call that dr

> > again tomorrow.

> >

> > I made my self stay in out of the cold because it really makes me

> > hurt when I breathe. Hopefully this coming week in Georgia the temps

> > will be back in the 50s.

> >

> > I wish I knew some words to write that would help people feel better

> > or feel more positive. I have enjoyed reading the posts for the past

> > week very much. I have also added this group to my prayer list and I

> > pray for all of you every day. I know everybody is in different

> > stages with this " monster " and I am learning a lot from all of you.

> > Thank you all for the knowledge you add so we can deal with

> > this " monster "

> >

> > Sincerely Jane IPF (Dec.1998)

> >

>