Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Borrelioosiyhdistys, Bb, Jatta1001, Bb, Jatta1001, Borrelioosiyhdistys, Jatta1001, Borrelioosiyhdistys, Bb, Jatta1001, Borrelioosiyhdistys, Bb

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Viestit: 1820
Liittynyt: Ma Tammi 26, 2009 23:13


Viesti Kirjoittaja Bb » Ti Tammi 27, 2009 21:34

Kuulostavatko seuraavien henkilöiden oireet tutuilta?

Perheen äidillä ja kahdella lapsella on borrelioosi. Äidin mukaan lapsilla oli borrelioosi jo syntyessään.

I have been in treatment for a year now, as well as both of my children, ages 16 & 18. They both contracted congenital lyme. I was most likely infected when I was 3 years old. I am now 41. ---We are all on oral abx. (my kids - BiaxinXL & Plaquenil, me - BiaxinXL, Plaquenil & Flagyl). Along with Probiotics, Milk Thistle, Mag. & Nystatin.

I feel so guilty because I have practically zero energy. On top of that I feel like I'm an 80 year old arthritic woman! Some place on my body hurts every day.

Some well meaning friends/family say maybe it would help if I and my children got more active (push ourselves more) we would feel better. Believe me I try to do that (so do my kids) only to pay for it later.

Another thing we deal with is our sleeping/or lack thereof. Evenings seem to be better for us, but then we can't sleep at night because of the pain.

But once we get to sleep, we could sleep for 10-12 hrs. Anyone else have this problem? I feel like our sleep "clocks" are set wrong. Like when they say a baby gets their days and nights mixed up?

My daughter and I have more of a problem with this than my son.

All of you "long termers" out there, do you have similar situations - How long were you in treatment that you experienced noticeable improvement with sleep, pain especially?

Am I expecting too much too soon, if so, I can handle that, or am I just being a "wimp"?

I feel bad some days when my husband gets home form work, I'm still in my pj's. It makes me feel pretty worthless, even though I know that's not true.

My kids are homeschooled, so we're all at home. They would have missed so much school if they actually went somewhere.

My daughter is going to have a laporoscopy (sp?) surgery done on Monday, because they suspect endometriosis. I also had endometriosis that I had surgery for when I was younger.

Is what I'm feeling normal? How do you deal with all the people in your life who look at you like you are from another planet when you try to explain to them about lyme and how you feel??

I wish that I could "will" myself to get better, every night I go to bed thinking about what needs done in the house. And how I wish I could get my body to agree with my mind! It just won't listen!

It's been a year since starting treatment, and I realize it could be years more. (My LLMD says I/we may have to be on a maintenance dose for the rest of our lives.)

But we have to get to that point first. I had Bell' Palsy and left sided body weakness when I started treatment. The Bell's Palsy has improved to the point that no one can see it in my face anymore.

As Background I never did have a tremndous amount of energy all my life (now I know why), but I really would like to know what it feels like to be somewhat normal.

In my life I have had :

tonsilitis more times than I want to count, been diagnosed with arthritis in different joints - only to disappear and go to another joint, mono when I was 16 - which then attacked my liver and I got hepatitis (thought I was going to die), endometriosis, mytral valve prolapse, osteomyalgia - lose of bone density - broke my collar bone once when I rolled over in my sleep!, fibromaylgia, chronic sinusitis, bronchitis, Bell's Palsy, migraines, chronic neck and upper back pain.

Doctor suspected herniated/slipped discs in lower back, toxemia with both pregnancies, and these are all the things that I remember, there is probably more.

All these before my Lyme diagnosis with the final one being "It's all in your head syndrome".

I have had lyme since 16 (at least), suspect I may have been born with it. I only got dx'd last year and the time I was on abx, I saw much improvement.

Before getting really sick, and finding out what I had, a low carb diet was extremly helpful in gaining energy and reducing pain, not to mention serious weight loss.

I wonder if you are getting the proper nutrients as lyme steals so much. I just recently changed my mulit to living multi by garden of life and with the primal defense I feel better.

Ever since I started taking a lot of herbs for the liver, I have seen major increase in energy, it was amazing. Milk thistle would be one the others I got were from a doctor. I was taking 8 milk thistle a day (divided doses) not including the other herbs for the liver and I saw a HUGE improvement in energy and it hasn't weaned much since even though I am off right now.

My family doctor tested my children many times over the years since they were small - because they had a lot of the symptoms of Lyme. But of course, the test always came back negative. We were constantly at the doctors for different things.

Boy, do I wish I would've known then what I know now! My daughter was exhibiting the symptoms of rheumatoid athritis and she had fevers they couldn't figure out the cause, swollen lymph nodes, stomach problems, heart issues, etc. She is a mini me.

My son has an unexplained neurological disorder (he loses control of his muscles at times), sinusitis, tonsilitis, his skin doesn't heal well, he's had blood clots, hip pain, (something with the soft tissues in the hip joint), etc.

I'm 35 now, but all my life (maybe since about 5) I've had these weird, vague health problems. Never really explained. It was just "me".I just kind of chugged along, but as I'm sure you know, it was hard and just getting harder esp since my early 30's.

Well, a little over a year ago I suddenly came down with "severe neuro lyme". Horrible, near dealth, couldn't get a diagnosis etc.

Well, I've been on antibiotics for almost a year now, and while I still have symptoms, I'm functioning most days now (the last 2 months esp) where I can have a pretty good quality of life. No, my energy is not always great, and I am pretty uncomfortable (and miserable) sometimes, but a lot of the nero symptoms are fading away....

It only hit me about 3 months ago that I prob. have had Lyme most of my life. The change with the severe neuro lyme a year ago was so dramatic, it hadn't occured to me that all the other things I had been dealing with my whole life could be Lyme too.

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