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Posted 8/11/2009 1:24 AM (GMT 0)
Are there anyone who is mostly bebound with this awful disease.Its only in the last 5yrs i have been 90% in bed i have horrendous symptoms dizziness, pain ,twitching and fatigue that is unbelievable.i find it difficult to sit up for any length of time i have very low bp also these symptoms were all present before i became bedbound so i dont think its deconditioning.thanks pingu
Posted 8/11/2009 1:49 AM (GMT 0)

Several years ago when I was at the point of no energy and completely wiped out - but not at the point of being bed bound, I found a nutritionist who began checking my diet and recommending additional supplements.  He has helped improved my overall health.  You might want to see if this would help you - it won't be an overnight change, but slowly you might see improvement.  It's worth trying anyway.

Blessings, Ginnia

Posted 8/11/2009 4:41 AM (GMT 0)
With that really low BP - have you had your adrenals checked out? Adrenal insufficiency will cause extreme fatigue and the low BP. Is your body temp low?

I have a low cortisol problem that we're going to work on before we start on the Cpn infection.
Posted 8/11/2009 3:20 PM (GMT 0)
Have your adrenals and thyroid checked... That could very possibly be part of your problem.

Blessings
Posted 8/20/2009 8:20 PM (GMT 0)
Pingu,
I suffer with bouts of being bed-bound & being house-bound. Most of it is self-imposed, as I know when to really hide out! I am imposing my bed-bound routine right now as I have really over-done it.
I am getting ready to start Homeopathic tx, I really feel like it's the best move for me right now as money is tight & Homeo is most likely the cheapest way to go for me.
I agree with the others about getting your thyroid checked. Mine are really swollen, and beginning to interfere with not only swallowing but breathing now as well - it really s*&ks!!!
I wish everyone health & peace with where they are right now! ~
Trav
Posted 1/21/2010 5:25 PM (GMT 0)
Hi pingu - I am here in scotland too - new here - think my hubby has lyme.
Posted 1/21/2010 6:15 PM (GMT 0)
Pignu,
I am in US. I have been bed bound on and off for over 15 yrs. the only thing that got me going was medications that only
made my condition worse because of misdiagnosis. So be careful what any doctor give you to make you feel better especially the steroids or amphetimines. even antidepressants make you push yourself beyond your limit.
You have to start getting treated and make the diet changes. Also, the pain will zap all of your energy too.
the diet and air quality are so important. I hope you find a good doctor to make the right choices for treatment.

best of luck to you
Bucci
Posted 1/22/2010 12:23 AM (GMT 0)
Thank you all for your help and care.Where about in scotland are you from maunsie,would be great to talk to someone near home .No offence all you other lovely people i mean it be helpful knowind about what drs etc are nearer me fpr treatment.you are all lovely people on this site and thanks so much .love pingu xxx
Posted 1/23/2010 3:51 AM (GMT 0)
I have been 'sick' for just over four years, I was bed bound for several months in the beginning of my illness - being undx'd with lyme for the first three years, I did get dx'd with other things in the mean time that I treated during that time - cebv, Fifth's ( which I treated w/antivirals), hashi's, (still treating) and other hormone imbalances. It is astounding all that lyme disrupts - we really must treat everything 'wrong' not just the lyme. And it is so important what we eat, and really everything that touches our lives - it is best to reduce your "chemical" loads as much as possible in every area that you can.
Posted 1/23/2010 9:31 AM (GMT 0)
Hello Pingu - I am on the west coast somewhere between fort william and campbeltown.

Its my husband who we think has lyme although still negetive on the anti-boy tests - He didn't receive appropriate anti-biotics at the time of rash 6 years ago - He has actually been quite well since the bite - but this autumn has taken a tumble and we suspect that lyme is getting into his nervous system, causing the achy legs/back/fatigue/headache,brain fog.

He is trying to keep working , but we are worried.

Hve you had any sense from your doctor? have you found a LL doc yet?
Hope you ok
Posted 1/23/2010 10:22 PM (GMT 0)
Hiya thanks for your reply i am in the very far north of scotland.My dr is helpful but doesnt really know what to do .if you would like to talk anytime email me and let me know be great to talk to someone i also had  the bullseye rash andgot horrendous symptoms. love pingu
Posted 1/23/2010 10:44 PM (GMT 0)
When I was first diagnosed back in 1998, I was bed bound for almost 6 months straight. I got up to use the bathroom and that was it. I couldn't do anything for myself I was so bad. This was in large part to being on antibiotics after 5 years of mis and undiagnosis. It took me over a year to start to feel well enough to function around the house, but I remained house bound for some time. At the two year mark I was well enough to go out again and by 3 years, I moved out on my own, was working full time and having a completely normal life again.

I understand not being able to get up and do much, but on days you think you can, you should try to get up and at least walk around. I had a physical therapist come in and show me exercises to do in bed as I lost all my muscle mass and a lot of weight at my sickest time. I slowly built my way back by walking (some days it was 2 minutes at the most), but I tried to do what I can and slowly worked my way up. It really helped me get better as well.


 

Posted 1/26/2010 9:43 AM (GMT 0)
Hi pingu and maunsie! Welcome to the forum!

This is off subject but I just have to tell you-----two of my family's college-age, young adults visited your beautiful country and fell in LOVE with it! They look forward to visiting again (one studied for a semester at St. Andrews Univ.) and spending as much time there as possible. My husband and I briefly spent part of a day there last summer and we were so impressed, we also plan to visit again for much longer. When/if we are able to visit there again, we would be honored to meet you "fellow lymies". I hope we can stay in touch and make this dream come true!

Wishing you both good health and happiness, bablymers mom

P.S.   A friend of mine was bedridden at one time, but after treatment with IV rocephin, she was no longer in bed.  However,  the treatment was very hard on her body and when she stopped the treatment, she "crashed' and has had many severe troubles ever since.   She can no longer take any drugs and is allergic to almost everything---even natural supplements and most food!

 

Post Edited (bablymers) : 1/26/2010 2:50:36 AM (GMT-7)

Posted 1/26/2010 12:54 PM (GMT 0)
Bablymers = I grew up in the East Neuk just round the corner from St Andrews, St A is a true delight.

- And Pingu - we picked this tick up in Tain - we stayed there for a year and a half - before moving south west - you prob know it..

Posted 1/26/2010 9:16 PM (GMT 0)
Bablymers thanks for your kind words and welcome ive sent you an email hope you get it. Maunie ilive a wee bit further north am way up beside john o groats it would be great to talk to you but am not sure how to give you my phone no or e mail in private only if this be ok with you .I dont know anyone in my area with lyme disease and would love to compare symptoms and treatment with someone thanks a lot love pingu xx
Posted 1/26/2010 10:57 PM (GMT 0)
pingu, I've been bed-bound before with vertigo, extreme fatigue, blurry vision, double vision, severe pain, etc., but only for a few days here and there. I do notice that I do better on a gluten free, low carbohydrate, high protein diet....I've heard that carbs feed the Lyme bacteria.

Best wishes to you.....I hope you feel better soon!
(((hugs)))
JoAnn
Posted 1/27/2010 7:10 AM (GMT 0)
Hi again pingu! I am sorry I have not received your email. Could you try again please?
If it still doesn't come, I will try to set up a yahoo mail account and then try that. Do you have an email for me to try? Thank you. bablymers mom
Posted 1/28/2010 6:54 PM (GMT 0)
Here is my email - [email protected]

maunsie

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