posted
Is anybody else bedridden? I've been to 6 LLMDs and 42 other docs and am over the last ten yrs wasting away.
How do I get from bedridden to moveable without spending more money? We have less than none.
I keep trying to do a little every day and wear a smile from ear to ear. However if I go to dinner one night I pay for it for days.
For example I have been in bed for five days for trying to be up with my family bits here and there last wknd.
I would love to see the ice caves this month but the only way is for my family to take turns pulling me in the dogsled for two miles.
Everything is so monumental. Any ideas? My migraines and body pain hurt so much it's unbearable to live. I have a positive outlook. Really I do. I just don't know where to start.
Migraines make me throw up and r making me waste away. Any advice appreciated.
Tomorrow is a new day. That's my motto but I just don't know how much longer this body can hold out.
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
What migraine medication are you using currently, and are you currently using any abx to treat for bartonella or babesia?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Took five years of IV and oral abx. Currently on fentanyl patch and OxyContin for breakthrough pain. Also on temazepam nd zofran Benadryl and melatonin at night and lyrics and cymbalta. That's it but I've been through the ringer with every migraine and antidepressant out there. Bupenorphine is the next one they want to trey but nothing actually takes the nerve pain away.
I had Lyme encephalitis for 3 yrs b4 they diagnosed me but by that time my nerves were so raw I weighed 90# and threw up all day every day from pain.
I'm afraid I'm headed back there as I watch myself waste away. Nobody knows what to do with me. Bcuz of past abuse when I was 16 they want me to go to a psychotherapist now.
Prob w that is I live in boonies and closest one is 90 min away and I can't drive so to try to do that 3 x per wk seems unrealistic. I don't even crochet anymore. Doesn't bring me any joy anymore. I'm so stuck.
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Oh I am so sorry
I have used IV hydromorphone in the past for migraine pain but to be honest the safe doses don't touch my migraine pain and just drove my blood pressure very low.
From that point forward I said no more narcotics.
Tried liquid morphine in the past also, but it also didn't help the migraine pain much.
Just makes one in pain and sleepy.
I haven't tried Fentanyl but I suspect it would be the same as the hydromorphone and morphine.
Narcotics don't do much for head pain, I find.
I was given acetelzolamide this week to see if it helps reduce the intercranial pressure. It takes the edge off. But when the pill wears off, the pressure builds up and the pain is back.
Have you tried it? It is affordable. Moreso than the gazillion other meds.
I wish I could offer more advice.
I can only offer support and a hug. Migraine pain in the worst. It is inescapable. Unrelenting. Neverending. Well encephalitis at this point but I still call it migraine. Force of habit I guess.
I did find after a while I got the "rebound" headache from medication overuse. It was another weird headache ontop of the usual migraine. Almost like going on a merry-go-round on top of a migraine. I pinpointed it to an NSAID.
I use gravol suppositories to try and keep food and meds down. Have you tried those?
Thinking of you.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Thanks for the ideas. I will run them by the doc. Yeah I was on 2 mg every 2 hrs of IV dilaudid and 50 mg IV Benadryl and that helped but like u I wasn't in pain but just slept all the time.
Thanks for caring! I don't c my doc until feb 13 but will ask then.
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
When you say you pay for days when you go out for dinner suggests possible adrenal fatigue.
I was bedridden for 15 months and then went to chair-bound. Looking back at all of the treatments I've done, I am positive I would have made much more and quicker progress if the adrenals had been addressed properly.
I am no longer chair-bound so there is hope.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I know the pain from Lyme is indescribable but for me, it took me weaning off of those before the pain stopped. When taking such powerful drugs consistently, they will cause pain when they originally had helped.
It's not what you want to hear and it takes superhuman discipline but an effort must be made to lower the dose in order for the tolerance to lower.
I've had compound fractures, surgeries, appendicitis, organ pain...nothing hurts worse than when you are consistently taking pain killers and they wear off. The pain they were originally caused to help is magnified 100 times.
Opiates have an incredibly low success rate for Lyme patients and are extremely toxic which will negate treatment.
posted
I was in bed alot too before I found physical treatment that enabled me to get out of bed. So I think it's about finding treatments that work for you and improve you so you can get out of bed.
And that's a process and one that we need to be patient about, but steadily going forward on.
I also used my downtime - I read alot, talked on the phone - so whatever you can do, I encourage you to do.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
sickofthepain made a couple of the suggestions I was going to make.
I was wondering if you had done anything for hypercoagulation as that could potentially help the migraines. Options include lumbrokinase and other systemic enzymes such as Wobenzyme or the high dose niacin as mentioned above.
I was also concerned over your weight. Nutrition may be a big factor in the pain and other symptoms. Antioxidants are very important for brain function -- vitamin C for example is highest in the brain of anywhere in the body I believe.
Pychnogenol (pine bark extract) is another fairly inexpensive antioxidant that crosses the blood brain barrier.
And the good fats are also very much needed for brain and nerve function.
It sounds like you need to change focus and maybe work more on rebuilding your strength before attempting to kill pathogens at this point.
And yes adrenal fatigue could be a major issue as well.
In your situation I would probably be looking for the best herbalist I could find.
If you have not tried acupuncture that would be another possibility for pain issues.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks everyone. I tried acupuncture but she kicked me out bcuz I missed two apts bcuz pain was so bad I couldn't get away from the toilet. I'm trying to find someone who can do Reiki and Yoga at my house.
I inherited a little money and hope that gives me a jump start.
What do you all mean by adrenal fAtigue? Is something my GP would be able to handle ?
I went to urgent care w 102 fever and pneumonia. I just can't catch a break. I don't want to give up.
I give a talk to the local Kiwanas every year and had to have my dad go for me this year. I couldn't even do tha. I'm in Under Our Skin and usually show clips from that and discussion flows from there. This year he told my long story and they had no idea how sick I've been an am. It's such an invisible disease
It's almost good I couldn't go so they saw another side if this.
Anyway thanks for all ur help and advice. Gotta go sleep ! God bless u all! Xoxoxo
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Can you get Dr James Wilson's book 'Adrenal Fatigue'? That book was the best $15. I spent.
It explained what was going on and how to help / recover.
We used his adrenal support supplements with very good results. After taking them for a month, my husband went from struggling to work 2 hours a day to working 5 hours a day.
Posts: 2252 | From USA | Registered: Aug 2011
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Ultram is significantly more effective for fibro/Lyme pain than oxy or morphine. You just don't get the high.
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
No answers for you but sure can sympathize .. I am so sick of trying and never seeing a light at the end of the tunnel.
This is probably not the thing to do but I have given up on doctors, as there is no money, but the main reason is I saw no improvement and every doctor had a different treatment etc.. I try to move around the house and like you if I do anything I am in bed for days..
No answers but lots of sympathy and prayers.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Phyll6648 and others tyvm for the support. I've decided to try a psychiatrist. I'm allowed six visits and maybe if I find a competent one I can get some hope.
I just refuse to use any more of my 13yr olds college fund for my health. He already lives with so little. Used clothes and toys etc. I spend any money I get on pastel pencils and art paper for him. He's so talented. He won second place in the teen division of a local contest.
Don't know why I started bragging about Zach I'm just so proud of him!
Anyway thanks for all the support! I'll try to keep my chin up.
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Schnuddelka,
I'm glad your son is interested in art. You are good to keep supporting him in that way.
So, you have tried rifing and it didn't help you?
I hope that the psychiatrist can be supportive and understands these infections. Sometimes, they are in denial and try to say that health issues are because of childhood trauma, etc.
Now if he/she prescribes an antidepressant or similar med, maybe that could help you.
And hopefully they will understand lyme and co's.
Best wishes. There is an answer for you.
Perhaps part your health problems are viral. Lyme has helped to reactivate the Epstein Barr Virus that is in my body, plus I tested positive for other viruses.
They key is probably getting our immune systems healthy.
posted
Tyvm everybody. Helps just to have the moral support! U r all in my prayers as well. Now if this cold snap would snap its way away I'd be able to get a little sunshine at least !
God bless us everyone! xoxo
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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