Born with ME

[Tia]

Regarding the urinary tract infections. I had them for years and had all kinds of test. They couldn't find anything wrong with my bladder or my urinary tract. A couple of years ago my urinary tract infections went away and haven't come back yet. My son and I also have problems with reoccurent sinus infections and ear infections. He has had to have surgery.


My sister-in-law has the worst case of CFS/ME in the family. She gets urinary tract infections so bad that they spread to her kidneys. She also gets Kidney cysts and stones. She has had to have her ovary removed because of cysts and she had such a big problem with her lymph nodes swelling and getting cysts that she had to have some of her lymph nodes removed. Most of what was removed was under her arm pits. She has also had infections so bad that she has been in the hospital for sepsis more than once (infections that have spread to her blood). This is why she is seeing an infectious disease doctor. Things for her were so bad that her doctors finally decided she must have some type of infection lowering her immune systems ability to function. However, they never did figure that out and she is convinced that her illnesses are because of past trauma.

Oh good god. When I hear about your sisters suffering.. Geez. My heart bleeds for her. It does show however that this XMRV-research MUSt be right on the money! If they can get the rootproblem disapear by treating her XMRV, then she should get rid of all the other symptoms too, right? Let me ask you: how much does she sleep a day? Does she have POTS? Stupid questions maybe but it makes me so curious. I've read about xmrv and the link to cancer, so what you're telling me makes sense; that living with an untreated infection in your body of course creates other illnesses since the body can't take it. I'm VERY curious about your sister and would love to hear more!

 

[Tia]

Good POTS info at following site http://www.dinet.org/pots_an_overview.htm If you do have POTS and start treating that part of the CFS, it can make quite a difference to things. As long as i dont flare my POTS up, Im fairly functional. POTS causes many symptoms when its flaring up. (not sure if flare is the right word or not.. or maybe i should be saying POTS attack, its symptoms can really come in and hit).

i suggest to not stand in the shower.. when my POTS was bad, i used to shower sitting on the floor (and crawl out of there when finished). You could also use a bath chair. As the other said.. avoid showering in too warm water as heat is a trigger for POTS. I used to have my shower nice and warm but everytime dizziness started to come in more.. I'd turn the shower onto cold for several seconds (as much as i could bear) then just put the temp up a little more but keep it cooler. (and keep switching it back to cold). That allowed me to stay in longer.

Try to learn to manage the POTS better (eg increasing fluids etc) and this should be a help.

Yeah, that's exactly the way it is! :O If I shower medium warm or clder, there never is any problems with fainting, but if I shower warm, I can nstantly count on being near faint. Wow.. So weird that others explain the exact symptoms! Nevr happened to me before, but then again, I'm new here. You really know how it is. It's like said earlier: the heat from the shower makes the blood run to the skin which makes the brain get too little blood and thefefore the fainting starts. It all makes sense..

 

[Mya Symons]

Oh good god. When I hear about your sisters suffering.. Geez. My heart bleeds for her. It does show however that this XMRV-research MUSt be right on the money! If they can get the rootproblem disapear by treating her XMRV, then she should get rid of all the other symptoms too, right? Let me ask you: how much does she sleep a day? Does she have POTS? Stupid questions maybe but it makes me so curious. I've read about xmrv and the link to cancer, so what you're telling me makes sense; that living with an untreated infection in your body of course creates other illnesses since the body can't take it. I'm VERY curious about your sister and would love to hear more!

Tia, actually she is my sister-in-law. I have two sister-in-laws with CFS and one also has FMS. This particular sister-in-law lives in a different state and I do not talk to her much. My husband was pretty severly abused when he was a child and I have encouraged him to talk about it including getting counseling. She has been angry with me for this and we haven't talked for awhile.

I know she goes through periods where she feels better at times, but most of the time she does sleep a lot. She has also had bladder cancer which is in remission and sometimes has small seizures (they are seizures she has while standing up). When she was in the hospital once because of her weak immune system she contracted a staff infection of the skin that has never gone away. I am not sure about the POTS but she has had an CFS/ME diagnosis so I imagine she probably has POTS. I do remember her talking a lot about nervous system problems including dizziness and balance problems. She also can not wear shoes because of the nerve issues. She has been tested for every other disease possible that could be causing these symptoms including having several full body scans and they have all come out negative. Her doctor expected her to turn up positive for Lupus but she has tested negative for all these years (over 15)

She is convinced that her illness is caused by trauma because she became ill after being sexually assaulted. I did mention to her once that I thought it might be contagious and she became upset. This is understandable since there are several people on my husband's side of the family who are sick with CFS and/or fibromyalgia and she was the first to get sick.

 

[Tia]

Mya:

Sorry about the sister-thing.. My memory sux. I read after I replied too that it was sister-in-law. Uups.

Well, after reading you're text there is NO doubt about it: she defenitely has ME. It's just so typical.. The doctors can't find anything and put a stamp on you as "imagining sickness" while one gets sicker and sicker and always in something new.. It affects ones economy, the people around you and everything.. It's a downward spiral. So if they can resolve the question of it is XMRV behind it, and make us well again, we have no more medical bills and can work and pay off our debts and everything will turn into an upward spiral instead.

I can't help but wonder.. How many live alone like me with ME and have noone to turn to? How many of us are there out there and how many doesn't even KNOW they have it? This is one freaky and scary thing.. I sure hope they're right about XMRv and that they will be able to cure it and make us better. It would be a nightmare to continue like this for the rest of one's life.

Also I'd like to know: Is she moody? Does she have moodswings and temperament is quite aggressive? Trying to put the pieces together here.. have so many questions but such poor memory. :S