|
Post by iwmlb68 on Jul 23, 2006 6:10:24 GMT -5
Hi All, Flowerchild has asked if I could pass on some information to you all about Diseases in Australia. If we join forces we might be able to help each other out here. Please see first link: www.health.vic.gov.au/ideas/notifying/whatto.htm1. This link is the Victorian Government Health Department. It has a list of all the diseases in Victorian which need to be reported. If you have trouble getting this link let me know please. 2. You will note that there is no reference to Rickettsia whatsoever and that is what I have been diagnosed with - spotted fever group and so have a couple of others in this group in Aussie, as well as Q Fever, Ross River Virus etc. 3. I have spoken on the phone to a farmer in North Victoria who has CFS/Rickettsia and Lyme Disease, he has a lot of close friends who also have Scleroderma, Q Fever, and CFS. He also sees the same doc as me. Anyway people lets see how we go, any requests for disease info from Australia please let me know. More than happy to help you all. ;)
|
|
|
Post by iwmlb68 on Jul 23, 2006 6:11:07 GMT -5
Why don't my smileys work? AntHill do you have any idea?
|
|
|
Post by iwmlb68 on Jul 23, 2006 6:20:46 GMT -5
I received a new registration the other day via the MRF. I sent an email to this lady today. I just received a reply from her and below is her story. I suggested that she come to Lymebusters to hang out for support and treatment information.
Hi XXXXX
I am very glad to hear from you. This is my sister's story:
In early Feb this year XXXXX and her partner, XXXXX, noticed little bugs all around their home. They thought they were fleas, so set off flea bombs. unfortunately these did work. They lived with the bugs, hoping that they would go away in their own time. Instead these bugs began to dig into their skin and cause problems. Luckily, they did not infest their two children, aged 4 and 2. In early March the family moved out of their home and into a motel, leaving all their worldly possessions behind. Unfortunately for them, the bugs moved with them - in their clothes, car, platic containers, everything. They sent the boys to my mum and contacted the local council. An exterminator was called, but when he heard the nature of the bugs, he told them he would not go anywhere near the house. (Apparently, in Aboriginal times, the land the house is built on was swamp land and the Aboriginal people would not go anywhere near it.)
Let's come to the present. XXXXX and XXXXX are still infected with what one doctor has said is Collembola. The council is not doing anything about the house. XXXXX and XXXXX have not been able to move back in, the bugs killed their cat and are still in possession of the house. XXXXX and XXXX enter at their own risk to retrieve any of their belongings. Their boys now live with XXXXX dad and stepmum and XXXX and XXXX have not seen them for 3 weeks for fear of contaminating them. No one has told them if they are infectious or not.
This last tuesday, XXXXX and XXXX saw a dermatologist who has asked them to collect samples over the next 11 days, but he believes they are infected with morgellons. The local council do not want to acknowledge that XXXXX and XXXX are suffering from anything and believe that they lived like pigs and that any problems are their own fault. XXXXX is a neat-freak. I have never known a person to live so tidily! Yes, they were living in a house that needed a lot of renovating, but that does not have anything to do with this. I know that collembola love wet areas, and i will admit that the house was full of moist areas. That does not count for all of these problems, though.
I apologise if this letter is a bit of a shambles, but my family is at its wits' end. I have seen my sister once since this all began, because we do not know if she is contagious and my partner has Cystic fibrosis and we don't want to put him at risk, either. I am planning my wedding for October this year and no one will tell me if XXXX and her family will be able to join us. All we want is some answers and for this family to get back together.
I don't know if you can help me, but some more information on morgellons research/remedies in Australia would be great. I want my nephews to go back to their parents. And i want them to be able to find an new home and rebuild their lives.
Can you help us,please?
XXXXXX XXXXXXX
PS I have also sent your details to my mum, so she may also contact you. Thanks.
|
|
|
Post by iwmlb68 on Jul 23, 2006 6:32:37 GMT -5
When I started my research 3 or 4 years back (before I had the diagnosis of Rickettsia) the closet disease I found was Elliot's Disease. I do remember in a phone conversation with Mary L. a while back that she really wanted to call Morgellons - Elliot's. I found my info. through this link. members4.boardhost.com/Kritters/ I fell upon the Morgellons Foundation only through pure chance because a doc said scabies, but because scabies doesn't effect the scalp and face I was lucky to find MRF. It was a Sunday afternoon I remember and I phoned the Victorian Health Department out of hours emergency phone number to report infectious disease. I told the woman I had Elliot's Disease or Morgellons Disease. Never heard of it she told me. I said I was going to the XXXXX Hospital in Melbourne to see an Infectious Disease Specialist who I once worked with for only a short while some time ago. She told me to tell him and they would look after me. That they didn't, I was just bounced around the health care system and even endured a two and a half day stay in the Psych. ward to prove that I had a physical illness. They said hummmm could be scleroderma. I was discharged because they said I did have a physical disease but there was nothing more they could do for me. So I was back Doctor shopping once again. All my blood tests are very healthy apart from the Rickettsia Spotted Fever antibodies an elevanted CRP and ESR which showed inflammation. I must mention that whilst under this hospital I looked nothing like a genetically should, I had no hair, bloated from head to toe, could hardly walk, severe CNS problems. But of course I must be damn delusional hey?
|
|
|
Post by iwmlb68 on Jul 23, 2006 6:58:40 GMT -5
In March 2006 I telephoned the Rickettsional Research Laboratory in Geelong Victoria and told them of Morgellons Disease. I asked if they would like to meet with me and collect some specimens. The doctor was very nice but he said - we just don't have enough people here for that - there are only three of us, but I am very interested in this disease and will certainly check it out. The link below is a radio interview from back in 2004 it is about a misdiagnosis of Rheumatoid Arthritis which turned out to be Rickettsia. www.abc.net.au/adelaide/stories/s1229038.htmI found my current treating physician through the Rickettsial Research Laboratory. www.barwonhealth.org.au/arrl/home.htmlI said to this doctor - look you have all my details and blood records if you want any further information please contact me, or if in your travels you are talking to another doctor please mention this disease. I told my doc about this and said I am just trying to plant seads in peoples heads and hope the information will get into the right hands. My treating doc is a lovely man, but I still have the problem where I can tell him all about some horrible symptoms and he doesn't respond to me. I am visiting him this week with my parents. I spoke with him the other day on the phone because I was in a terrible state with paranoia from the Flagyl. He told me that he definitely believes that there is an infectious agent involved with Morgellons and then told me about Dr Robert Beck who wrote "The Road Less Travelled" was murdered recently and maybe it was the mafia, because mafia have been involved in pharamaceutical companies for years. Then said well I will give you some more NAET and maybe we try some more oral Dalacin C. I am not knocking the man because he has helped me, but for god sake I was fragile enough without him telling me more crap to add to this whole nightmare. Maybe I shoudn't have ever shaken his hand. Strange thing is - his wife works at the surgery - lovely lady but she says I don't take any of the vitamin supplements or any of that rubbish. I said to mum tonight if the doc says Morgies is an infectious agent - why the hell doesn't he contact the health department then. So the three of us are going to come down on him on Wednesday. I am very concerned about the health of my 9 and 12 yr old nephews because they have been in contact with me since birth. Their mother (my sister) is an RN specialises on oncology and chemotherapy, I can't talk to her about this because her damn husband (an ex senior detective with the victorian police force) thinks I am a mental case and delusional. She tells me she has never heard of a herx, and then in the next breath says isn't it a shame about Kylie Minogue having cancer, the poor poor girl. I just wanted to scream!!!!!! The pressure of my family at the moment is incredible, my dad has suffered for 24 years with mouth cancer, my mum has an implant to control messages from the sacral nerve to the brain for bladder instability, but this is what makes us all sick, my grandma is 90 years of age and is getting the best of help from doctors and is currently in hospital after some abdominal problems which seemed to stem from scar tissue from her hysterectomy 50 years ago. This is okay now was removed through surgery, but she has ended up with pneumonia - they have also treated this and she is now back on solid food and is sitting up right, feeling great, her mind is so sharp, but says "oh what have I done to deserve this". I love her dearly but she thinks I am just a bit of a "problem". So the hospital which turned me away on three occasions in the past even when I exhibited all symptoms of a stroke - are keeping her alive, fit and healthy. It just doesn't make sense to me. She isn't even an Australian Citizen which I am. She has never worked a day in her life in this country - which I have. She has never paid any taxes in this country - which I have.
|
|
|
Post by iwmlb68 on Jul 23, 2006 7:06:09 GMT -5
|
|
|
Post by iwmlb68 on Jul 23, 2006 7:07:06 GMT -5
|
|
|
Post by iwmlb68 on Jul 23, 2006 7:20:40 GMT -5
|
|
|
Post by iwmlb68 on Jul 23, 2006 7:22:56 GMT -5
|
|
|
Post by iwmlb68 on Jul 23, 2006 7:35:02 GMT -5
www.beyondblue.org.au/vcoe/index.aspx?link_id=39.259This Professor is also very much aware of this disease. This Prof and a colleague were going to do a story on Morgellons for the Medical Journal. Because I was under IV treatment I only met with his colleague (a young psychiatrist trainee) once, I was a bit too sick to continue, but there has been no mention of a story on Morgellons for the Medical Journal to date. I am catching up with him next week. He is happy I am doing well off the Psych. meds. I want to let him know this whole situation is insane and something needs to be done.
|
|
|
Post by iwmlb68 on Jul 23, 2006 16:22:58 GMT -5
|
|
|
Post by iwmlb68 on Jul 23, 2006 16:26:44 GMT -5
|
|
|
Post by iwmlb68 on Jul 23, 2006 16:34:46 GMT -5
|
|
|
Post by iwmlb68 on Jul 23, 2006 16:36:44 GMT -5
|
|
|
Post by iwmlb68 on Jul 23, 2006 16:38:03 GMT -5
|
|
|
Post by iwmlb68 on Jul 23, 2006 18:15:47 GMT -5
|
|
|
Post by iwmlb68 on Jul 25, 2006 22:48:39 GMT -5
|
|
|
Post by iwmlb68 on Jul 25, 2006 22:57:52 GMT -5
|
|
|
Post by iwmlb68 on Jul 25, 2006 23:15:44 GMT -5
|
|