Guestbook Number 12

Numbers 276 - 300

June 8 - July 28, 2003

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300. Amy Lynn Matias Starlite725@Aol.com
New York City
July 28, 2003 at 02:26

Hi there, I am definitely addicted to this website and I check in weekly; for those of you who don't know this there is a really interesting book called COPING WITH LYMPHEDEMA by Joan Swirsky,RN & Diane Sackett Nannery. So if you have recently been diagnosed with this illness or dont know where to get resources this book can answer alot of your questions and give you more information regarding doctors, therapists, stockings and taking care of yourself. Good Luck! Email me if you have any questions :)

299. Dr. Kuldeep Ratnoo sadgurudev@rediffmail.com
Jodhpur , India
July 20, 2003 at 19:54

Invitation to Research and Find the Truth Dear friend, A lot of people believe in the medical properties of yoga. But what they don't know is the divine effect of SIDDHA-YOGA and SPIRITUAL MEDITATION for bringing perfect health to all human beings irrespective of caste, colour, creed, nationality, language or religion. This message intend to bring this to the notice of thousands of those who are suffering due to ignorance and lack of information regarding Spiritual Science. Complete cure from all incurable diseases like cancer, AIDS, hepatitis, asthama, arthritis etc.is possible and for that people need not to spend a single penny because cure is present within them. It is possible due to the divine and supramental force present within every human being, (you may name it HOLY GHOST) that is unlimited source of immunity to all ailments troubling the humanity. This supramental force can be activated by awakening of 'mother power' KUNDALINI. Our revered spiritual master Sadgurudev Sri Ramlal Siyag has been blessed with the unique power of SHAKTIPAT by which the all powerful KUNDALINI gets awakened and induces Involuntary Yogic movements (external as well as internal) in the human body to cure all types of diseases. This is known as SIDDHA-YOGA where involuntary yogic movements take place in the body and the human being has no control over them (He can't initiate or stop these movements as per his will). These movements take place in that particular organ only, which is not fully functional and thereby making it perfectly healthy and immune to all ailments in the future also. (For details, please visit: the comforter. ) The only requisite for this type of cure is regular spiritual meditation and silent repetition of the divine word given by Gurudev during initiation ceremonies. Any person can attend these initiation ceremonies absolutely free of charge and as Gurudev says he never paid anything to his spiritual master to receive this divine power, which is helping the humanity and so he will not take money to distribute this power to the mankind. Therefore, the complete cure of CANCER and AIDS is possible through SIDDHA-YOGA if the person suffering from such diseases is seriously doing spiritual meditation. If one is serious then he can experience positive results within a week. There is no time limit for complete cure, it may take few minutes or may require few days of regular meditation depending upon the condition and willingness of the person. We don't expect and we don't accept anything in return for the possible cure of all types of incurable diseases; for the simple reason that we don't give you anything from the outside world; the cure is within you. Only thing is that you don't know how to communicate with the all powerful 'doctor' (supramental power) that is present within all the human beings. Thousands of people suffering with various incurable diseases like blood cancer, asthma, arthritis, hepatitis, kidney failure, brain tumor, HIV etc have been cured for ever in India through SIDDHA-YOGA and SPIRITUAL MEDITATION. Many such cases will be put up on the following website very soon. We sincerely feel that all the mankind has equal right to know about and activate such divine and supramental force which will remove all ailments, biological and psychological, troubling the humanity. visit: www.the-comforter.org Divine Change!!

As you know, science also believes that in cure of many diseases, meditation is more effective than all other methods of treatment. But you may not know that Spiritual Meditation is most effective not only for common problems but for incurable diseases also. This spiritual meditation is possible after receiving Shaktipat Initiation from Sadgurudev Shri Ramlal Siyag due to which the mother power Kundalini gets awakened and the following changes take place in the human body:

1. Complete cure from all types of physical and mental diseases such as CANCER, AIDS, DIABETES, BLOOD PRESSURE, T.B., HEPATITIS-B, ASTHAMA, ARTHRITIS, THYROID PROBLEMS, SLEEP DISORDERS, MENTAL TENSION, INSANITY etc.

2. Freedom from all kinds of addictions such as HEROIN, OPIUM, LIQUOR, HEMP, etc. within days without experiencing any bodily pain or withdrawal symptoms.

3. Libration from all wordly problems and solution of all types of problems related to daily life.

4. Developing Insight and Intuition to find complete solutions to limitations of physical sciences.

5. Practial Realisation and Visualisation of GOD (Supreme Spirit) during SPIRITUAL MEDITATION.

6. Divine changes in human life due to repression of Tamsic (negative) tendencies and strenghtening of Satvic (virtuous)tendencies by the SUPRAMENTAL FORCE.

7. Practical visualization of the instances of the indefinite present, past and future during spiritual meditation along with complete knowledge of Spiritual Science.

8. Attainment of MOKSHA (SALVATION) while enjoying house-hold family life.

Now if you want to experience the above mentioned DIVINE changes in your personality after receiving Shaktipat Initiation from Sadgurudev, then visit the website:

www.the-comforter.org

It is a NEW BEGINNING, A SPIRITUAL REVOLUTION because it gives results within few minutes. Try it on YOURSELF to realize the SUPREME TRUTH. It is unique because you don't have to give away anything to receive Shaktipat Initiation from Sagurudev Shri Ramlal Siyag. Initiation ceremonies are absolutely free and open to all people irrespective of religion, language, colour, creed, caste, or nationality.

Medical reports of few among the thousands of patients of cancer, AIDS and other incurable diseases who were cured for ever through this process of spiritual meditation, are also available at the website:- We invite you to research and find the truth !!

Yours, Dr. Kuldeep Singh Ratnoo Ph.D. Contact us :-
avsk@sancharnet.com
sadgurudev@indiatimes.com
ksratnoo@indiatimes.com

298. Peter ppkelly@indigo.ie
Dublin , Ireland
July 19, 2003 at 11:09

My wife was diagnosed with breast cancer in early April and had a mastectomy. She is now suffering with severe swelling of her right arm and has been measured for a compresion sleeve 4 weeks ago at our hospital. Despite phone calls we have not received the sleeve. Meanwhile she suffers. Has anyone purchased their own sleeves from a supplier, is there a supplier in Ireland, UK or Europe. How can you take your own measurements. Is it a good idea to go it alone.

Great to see so many stories.

297. Chris chrislu04@yahoo.com.sg Singapore
July 18, 2003 at 10:24

Hi all, its nice to discover this site. I am a 22yrs old girl who is suffering from lymphedema since I was 12yrs old. I was not born like this, its all because I knocked my right ankle while playing. It later because bruise and I did not really take good care of it until my leg was swollen. I began to look for doctors for cure but no doctors know what I was suffering from. Now, this illness had spread to both my legs, I wonder if it had spread to my knees.. I am so afraid. Just got to know from a doctor few days ago that I was actually suffering from lymphedema. I was so afraid to see doctors all these years as no one have a cure for this. All these 10yrs, I thought I was alone and a freak suffering this illness. Now, I have seen so many of your stories and is very console that I am not alone. My greatest dream is to be able to wear a skirt again, swim and do anything I want. I really hate those people who often stare at my legs when I was young, I need to wear a skirt because of my school uniform, I really hated those years.. When people stare or comment about my leg, looking like elephant legs, my heart really cried and wanted to die. I really do not want this illness to follow me for the rest of my life, can anyone help? I really hate to wear those compressive stockings as putting it on is a nightmare. Pls email me to share your problems with me, you are not alone..

296. Pam correll@penn.com
Ridgway PA , USA
July 17, 2003 at 22:23

Hi...I am a 3rd generation sufferrer of Milroy's Disease (there are actually 5 generations in my family). My family participated in research at Johns Hopkins Hospital many years ago, and I have joined a reseach study at the University of Pittsburgh. I would be glad to correspond with anyone else who has been diagnosed with Milroy's. Maybe we can help each other out!

295. Bahareh bahareh_p1346@yahoo.com
Oxford , United Kingdom
July 16, 2003 at 18:40

I invite your help and advice on treating sever right arm lymphodema that my anunt suffers from following bilateral radical meastectomy. She lives overseas in a country whose medical care of its non-citizen's is rather poor. For the past years, I have supplied her with compression sleeves, videos on MLD & low stretch bandages. She needs more. Specifically I want to send her a pneumatic pressure machine. She is under the care of an oncologist who will show her how to use the machine, but is unwilling to prescribe it. My questions to you are: Is there a prescription required for this machine in the USA? In the UK? If I can manage to get a hold of one, can anyone recommend which type, brand, model #, etc? Thank you. My prayers are with all of you as well. Thank you, bahareh_p1346@yahoo.com Currently living in England, returning to the USA soon.

294. Octavian Iosup iosup@yahoo.com
Galati , Romania
July 12, 2003 at 06:05

Hi, my name is Octavian Iosup My mother had radical mastectomy on both sides, the last one about three years ago. Since, she developed lymphedema at the right arm. Probably, right now she is in the stage II. Recently, we bought a Jobst Extremity Pump Model 116500. Anyone can help us to find a user manual for this pump? Has anyone used this type of pump? Thank You!

293. Vanessa david.kidwell@bigpond.com
Melbourne , Australia
July 11, 2003 at 07:16

I am a 27 year old female and developed Le in my left ankle when i was about 22, it has seemed to stay at the same size until now, i feel a change happening, my leg and groin are aching and i have been told that this could mean it is moving up the leg. I have had one very normal pregnancy without any change but am considering another child and have been told this could onset the Le even more, is there anyone out there who has any experience with being pregnant while having Le. Also has enyone had any success with vitamins. I also am wondering whether it is possible to contain this disease without it getting any worse or will i have a enormous leg when iam older. Great site!!

291. Michael W. Maiman maiman@wi.rr.com
Brookfield, WI , United States
July 9, 2003 at 14:50

I'm a 57 yr old (Insulin dependent Diabetic) male who enjoyed auto racing, golf, shopping & more. I am now in the process of filing for disability, my career as a Business Consultant is over.

Last October, while doing a good deed, I fell. Shattered my left leg between the knee & ankle. delevoped nerve damage (foot drop) & due to the surgery, Lymphodema.

Need thigh high compression stocking & brace to walk. I'm trying to find a way for me to put on my stocking by myself so that I can try to rejoin the working world.

Does anyone have any ideas?

290. JANICE jjlo400@aol.com
McDonough,Georgia , USA
July 6, 2003 at 06:53

Hello everyone, I am a 39 year old woman who was diagnosed with primary lymphedema at the age of 6 years old. I have worn compression stockings of all brands since I was 7 years old. I have used several types of compression machines since the age of 8. About 4 years ago I was told about a study that the machines do more harm than good. It wears out the veins and in the long run causes more damage. I have it in my right leg. In 1990 I gave birth to a healthy baby boy by c-section. At this time it began to build fluid in my stomach. In 1976 I went to Boston to have the lower in side of my leg removed so I could walk properly. The surgery held the swelling down on the inside but the outside began to expand worse. About 8 years ago I began using the Circ-Aide (wrap made out of velcro) on my lower leg. I lost 17 inches almost imediatly. And have kept it down. I had plastic surgery to remove my grossly inlarged stomach that just laid on my thighs. This was 3 years ago and my stomach still is flat. Just 2 years ago I had plastic surgery to remove the inside of my thigh. This surgery was a failure and my thigh is large I have trouble walking. Because of this I stay deeply depressed. When I go out in public I feel as if I am the freak show from the circus. I still work 40 hours a week. But am concerned that I cannot continue to support my family financially. Has any one had any luck with lyposuction? I have never had the MDL and donot care to try it. If any one has any new treatment or suggestions Please e-mail me? May you have a blessed day, Janice

289. John E. Fox cefjef@juno.com
Newport News, VA , USA
July 5, 2003 at 21:12

In about 10 days, I will be an eighty year old man. Within the last month, I have been diagnosed as having lymphedema. Symptoms: left leg, ankle and foot have extensive swelling. Foot so sore cannot wear regular shoes. Through a number of years, have been troubled with the edema. It had not been given a name. Primary doctor made initial diagnosis, verified by a Lymphedema Treatment Center Therapist. In a couple of days I am scheduled to begin a treatment program. Among many questions, one of the biggest is: what is the cause of my Lymphedema. Couple of years ago had hernia surgery in left groin. Have had 2 major spinal surgeries...in 1995 and in 2001. Had two TURP's (1982 & 1992). About a year ago, scar tissue in prostate (residual to TURP's) was removed. Have had 2 right shoulder surgeries. Have some other problems right now. Thanks so much for any help anyone can give!

288. Debi imalefty2@hotmail.com
Bonnie , USA
July 4, 2003 at 03:40

Hi everyone. My name is Debi and I have lymphedema in my right hand. I have been going to PT for the last two weeks and go Tues. for a fitting for a compression glove. I am doing the exercises at home and trying to keep my hand elevated when I can. Any suggestions? I have been off work but go back in a week or so. I had a bi-lateral mastectomy and reconstruction in Feb. Also had Chemo and Radiation therapy.

287. Lisette yaritsar@yahoo.com
Elmhurst, NY , USA
June 26, 2003 at 20:21

Gosh, where do i start? i'm 25 years old, and i've been suffering from lymphodema on my left leg since i was 10. It all started off with my ankle, and then in 1998 it started developing on my leg. It is painful sometimes especially when i walk too much. What really made it worse, is the rude comments of people. I am a teacher, and i understand that children can be curious, but when everyone stares, and start making side comments, it just hurts so much, but i expect that from children. What hurts me the most are adults, staring and asking questions. Last year at summertime, i went to a department store. i tell you it was like 105 degrees, and i couldn't bear to wear pants. The cashire asked me in front of people, why is your leg so deformed, ill, that's nasty. My heart just wanted to die, i felt like it was my fault, what did i do to deserve this? i still don't understand, i refuse to wear shorts, skirts, even though i love them so much. my boyfriend tells me all the time, don't worry about what other people say, or think, they don't know what great of a person you are. At least you have legs, and you can do the same thing they can. I take those words of wisdom, but i know how i feel, and i'm just glad to see that i'm not the only one with this problem. please, if anyone can email me, please do, i would love to speak to you. remember you are not alone.

286. Brenda Parsons s6949@comcast.net
huntsville , U.S.A.
June 25, 2003 at 10:16

Have had lymphadema of rt. leg since march. Ultrasound showed no cause. Now am having catscan of abdomen and pelvis to rule out a pelvic mass. Never thought of cancer. Has anyone had this to happen this way?

285. Keith probinsonrn@bellsouth.net
Mobile,Al , USA
June 25, 2003 at 04:39

My son was diagnosed with Milroy's congenital lymphedema when at birth the tops of his feet were edematous.His pediatrician was clueless as to the cause of the swelling so he was subjected to a battery of tests still with no results.After ruling out congenital heart and kidney defects the pediatrician recommeded we see a geneticist.We took him to see a geneticist a he diagnosed him.He told us that compression devices or wraps were, in his opinion,unecessary.He did receommend we seek out a pediatric orthopedist for any future problems,which we did.Again,no recommendations for therapy were made.He told us he has been seeing other children with lymphedema and the only problems they have had have been buying shoes.Because none of the doctors have given ny wife and I any cause for concern it is only now, a year later, that I have begun to research this disease.Garrett is now 1 year old and has developed normally.He has been walking since he was 10 months and has shown no ill effects of the disease other than "fat feet."After reading many horror stories about lymphedema I am now very concerned for my son and I am desperately seeking advice and information from those who have primary lymphedema.Does MLD or compression stockings work?Will my son be able to play like a normal child?Thank you verymuch for this site.

284. Kathy BBETTEN@AOL.COM
San Antonio , USA
June 24, 2003 at 01:10

WOW! JUST FOUND THIS SITE TODAY. 43 YR. OLD FEMALE WHO 4 WEEKS AGO HAD MY RIGHT LYMPH NODES REMOVED FROM MY LEG. ALTHOUGH NO CANCER HAD SPREAD I AM NOW SEEING LARGE SWELLING IN MY THIGH. IT FEELS TIGHT & FULL. I HAVE A LEMON SIZE BALL IN MY GROIN. WHAT THE HELL DO I DO?? IS MASSSAGE & THERAPY THE ANSWER??

283. David Raymond hllywood@naisp.com
Plainville , usa
June 22, 2003 at 06:55

So glad I found you people.The more I read the more I cursed my doctors.I suffered tissue loss and numrous grafts after contracting necrotizing fasciitis in my left leg.I fell into a huge manhole and the lid lacerated my shin deeply.The first cellulitis incident was cured in the hospital in 4 days.Right away I felt pain in my nipples .(Im male)I asked my primary care about this, and she shrugged it off.Eight months later, my left is red and swollen.Cellulitis again,I have eaten 3 different anti-biotics.The pain in the tissue behind my nipples gets worse.Now its a month later and nothing has changed except my legs are hard,red,and swollen.I go to the hospital and get all the tests and Im told I have fluid everywhere.NO YA THINK!!!!!All up my thighs and into my abdomen.My belly button is changing shape by the minute.So I ask the doctor "Now what do I do"???? Im still convinced I have cellulitis, and that I need an IV in the hospital.The doc says I had so many anti-biotics, that theres no way I can still have cellulitis.So, I stop them.(I have Hep C by the way)She tells me to take a diruetic and improve my diet pronto.Now,today,its 3 days later,my calfs are flaming red as hard as a bulls head with secondary stirations of red gleaming up and down.And the pain near the muscle on the tops of my feet or where my muscles are sore is freaking me out,nevermind the constant scratching.Scratching, yes the bane of mans existance.I use a hair brush on my legs.So what do I do now?Start on the anti-biotics again?I think im going to go to another hospital in the morning.They wont start me on interferon for the HCV until we get the legs under control.Anyone have any advice? Good luck to you all and I will pray for all of you ,thanks for helping me with your stories,it really helped.Im really worried bout the nipple pain.Thanks David Raymond

282. Fumie fumie@cad-smith.com.au
Melbourne , Australia
June 20, 2003 at 14:04

Fantastic effort hosting this site, I am glad to have come across this site. Reading about others with the condition makes me feel not so alone.

281. Ruthann ruthann@peoplepc.com
Bloomsburg , Pa, USA
June 18, 2003 at 06:27

Hi, I think I have the same problems in both legs and would like to know what kind of doctor to contact for treatment and therapy. I saw a vascular surgeon and was told circulation from heart to toes is fine but the return back to heart is slow. No one really mentioned anything about lymphedema but my legs are very swollen and hard. They did recommend the compression stockings which were not fitted well and I have a hard time wearing as they are too long and if I overlap, they cut circulation. I am due for knee replacement this Dec. and I would like to eliminate this problem. I do take diurectics every day, but this does not help. I am not diabetic but a borderline one. I really would like to consult the right type of doctor but I am confused. This doctor could be in the Wilkes Barre area also, as I live half way between both places. Any help would be greatly appreciated. Also I am over 300 lbs so I realize weight is a big factor but it is something I am working on and not having much success right now because of swelling. Can't exercise or even walk right, thus no weight loss.

279. Martha Kay mkmckusick@yahoo.com
North Richland Hills, TX , USA
June 15, 2003 at 16:31

I am 55 years old and was finally diagnosed with lymphedma last month. I have been in my first week of MLD and have had bandages for the first time. I was in a car accident 3 years ago and have had trouble with my legs since that time, especially the left. I can no longer work as I cannot sit for very long without a lot of pain and more swelling. I have always had a weight problem and large legs, but did not have particular problems with swelling, cellulitis, etc. until after I was diagnosed with Type II diabetes. Then after the trauma to my legs (caught under the dashboard in the car) I had chronic cellulits and have been on anitibiotics almost continually. I knew my immune system was compromised, but did not have any knowledge of lymphedema. We moved and I saw a new doctor who referred me to a Lymphedema Clinic here in the Dallas area. Wow, what a enlightening experience.

I also have another mitigating condition, Valley Fever. In January of this year, we took a vacation to the Southwest, and visited family and friends in Utah, Nevada and Arizona. Somewhere out there I breathed in this fungus that settles in the body permanently causing havoc. If your immune system is compromised as mine is, it can invade your skin and lymph system causing problems. Just what I need!

I would like to chat with Martha from Vero Beach who left a message on 6/14/03 but did not give an e-mail address. If you see this please e-mail me.

If there is anyone else out there who has similar problems, I am open to any and all to see if we can help each other. It seems our medical community has miserably failed to learn much or do anything much about this horrible disease.

278. Martha
Vero each , United States
June 14, 2003 at 02:45

I am a 58 year old Grandmother of 5. In my late 30's my legs started swelling, at first my father was worried that I might have heart trouble but my heart has always been good. Doctors that I went to said I needed to lose weight but no matter how hard I tried my legs were always large. In old family photos, my aunts and grandmothers on both sides of the family had large legs. All I was ever told was that it was a weight problem. In 1988 I was in a very bad car accident and my legs jammed under the dash. Soon afterwards my legs really started swelling. My family Doctor that I had been going to said "Your weight probably saved your life, but you need to lose weight, your legs look like tree trunks". Another Doctor said, "You were so good looking when you first started coming to me". My legs kept swelling and my ankles fell over my feet, sometimes clear liquid would seep from my legs and if I scratched a leg it would seep liquid for days, filling up my shoe, even it it was bandaged. No Doctor seemed to know what was going on. Finally, I went to an indigent clinic in this county and the Doctor told me I had Lymphedema and there was no cure, but he ordered me a pressure pump with custom made stockings that I could use at night. That was fine until another Doctor told me to use the pressure as high as I could stand it and then my legs got worse. I no longer use it. The knowledgable Doctor also sent me to a German therapist who said that German Doctors have been studying Lymphedema for 40 years. They aren't sure why I have it, I may hae inherited it or may not have enough lymph glands. I did the massage therapy for 5 weeks and lost 35 lbs in my legs. However, I couldn't afford to keep the therapy so now my family helps me to keep my legs wrapped about 4 nights a week and I wear compression bandages. My knees are really bad and I can't hardly walk so I don't know what is going to happen. I can't afford an electric scooter so I don't know how much longer I can work and keep my house. I would not wish this condition on my worst enemy. I am going to try natural herbs and see if that helps with the lympth system. If anyone out there know the kind to take please email me under the subject of lymphedema.

277. Alex ank122@psu.edu
State College PA , USA
June 10, 2003 at 05:09

Hi everyone, I cannot belive that there is a website like this. Anyway i have a problem with my right legs and i wear a 25-30 compression now, which i got this sat.I also have a huge vein that looks like it just flots and does not change, it sits above my knee cap. If anyone out there would like to email me to answer some questions. The main part i have is that do i have to ware these things 24/7? And if i do when can i expect to see results? Also how do you handle people, i live with 3 other guys at college and the make fun of me, 'oh alex weares pantyhose. It is a big joke to them. Social I am having a hard time dealing with this.

276. Lesley Lesley_20032000@yahoo.co.uk
ATHENS , Greece
June 8, 2003 at 14:21

I have suffered from Lymphodema in my legs and genitals for 18months, after having a radical hysterectomy in Dec 2001 due to cervical cancer; the surgery was followed by radiation treatment.

One day my legs started to swell so I went to see my oncologist-radiologist about this & was told not to tire my legs and to inform him if my legs get red or hot, when I explained that in my job I stand a lot, I was advised to change my career, (at 51 not a great answer) I still cannot work. At no time was I told this is lymphodema and just how bad this could become, and that there is no cure.

I was devastated to see my legs, genitals & abdomen swell so much that, no clothes or shoes would fit me, I walked with a limp, and to take a shower I had to have help from my daughter, to bend down was impossible.

By sheer determination I found help, my surgeon suggested that I look for a physiotherapist but only one who specializes in manual lymph drainage, this took some doing here in Athens, but there is one, if any body is reading this from Athens email me and I will happily give you her number. I can now say that my lymphodema in my legs is under control for the time being, after a course of physiotherapy and as long as I wear my compression stockings all day every day, yes even in 40c heat, (this is when we need the help, heat and humidity are a great enemy), daily exercise, a lot of walking in the winter and swimming in the summer, and simple lymph drainage, (SLD) which really does work, it is not easy doing this every day for the rest of my life, but what can one do.

Although my legs have greatly improved, my abdomen and genitals are still swollen, is there anybody who has any advise on these areas.

Good luck to you all.

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