I've had new symptoms come up recently (seems walking now sometimes produces some tingling in my toes on rt foot, and sharp needle like pain in one toe in rt foot--I thought bc I had over clipped the dead skin bc it hurt going into an Epsom bath, but now I get it outside of that )...
and my question is what do you say to yourself, do, watch, anything, to make yourself feel better and more positive? That you think is true? (any advice or help with the symptoms is welcome too) I just feel like I need something to make me keep going and keep Hoping... I really dunno if I'm improving or getting worse and don't feel I have any control here.
(I've even recently read a study, or several studies actually, given to me by my ND about focused thinking and meditation can actually affect dna--winding or unwinding it!)
Posted by hiker53 (Member # 6046) on :
I do a lot of prayer and talk time with God. I think that is my kind of meditation. Sit quietly and let God fill me up.
I also read the Bible. Am trying to memorize verses that I can pull out when I feel down.
A good comedy movie always helps, too.
And I have several "go to" friends and they have different kinds of problems, so I think listening to them helps.
Posted by MissVictoria (Member # 45232) on :
I'm sorry you're not feeling well yet. You will get better. I think knowing that and keeping that in the front of your mind through this process will help anytime you may feel discouraged.
Prayer and meditation are great. I've been going to Shamanic prayer ceremonies and have had healing ceremonies performed on me by a shaman and both have helped me significantly. Shamanism is all about healing.
I recommend going to a great therapist. Having emotional support is so vital for recovery
It's really important to rest when you need to rest, and to take good care of yourself. Don't push yourself to your limits. Your body is going through a lot right now, so listen to it when it needs rest and calmness
I very highly recommend Bach Flower Remedies
Posted by 6Hypnone (Member # 47629) on :
I do pray too. I also try to imagine all the spirochetes disintegrating in a non painful way.
Any tips or instructions on how to get into a meditation?
I question whether I'll get better now, that's one of the problems. Bc I haven't noticed anything really going away since I started treating in May 2016. How can you tell if you're actually going in the right direction?
I've also been reading those who think they're in remisdion--the bugs are just chilling in cyst form Posted by MannaMe (Member # 33330) on :
My hubby listens to motivational speakers / preachers / songs, using earbuds. Even at night if he wakes up, he listens to something.
He said he might only be awake enough to 'hear' a few minutes of it, but feels it soaks into the subconscious mind that way.
Daytime, he often only has one earbud in so he can hear what ever is going on around him at the same time.
Hubby is basically home bound. He believes his healing is coming in God's timing.
Posted by Harmony (Member # 32424) on :
Hm, I don't know how to say this and still sound positive, because it is, in its own way...
I used to be worried about crippling symptoms - now I just "take" them
I feel like I got hardened to everything
I had so many symptoms and they were, many of them disabling in their own right
I had no choice but to go on
then a lot of them went away - some on their own, some with a lot of drugs (abx) - some have returned and sometimes new ones appear - mostly neurological and musculoskeletal, some severe - often rotating
Since I still have fevers and chills, I assume I still have an active infection
Right now I cannot step on my left heal after rest, and yes, I worry from time to time that something big is going to happen if I keep ignoring things - like a tendon rupture
I do what I can with what I know and what I can afford - right now I got Epsom salt baths on that foot and I ordered ReMag and put it in my drinking water
ReMag was a tip from members of Lymenet (Thank you, Lymetoo!) and Bartenderbonnie reminded me of the Epsom salt baths
The added Mg actually made me 70% better overnight when I started my first hot Epsom salt foot bath one night - now it comes and goes and I added the ReMag to the water - I think it helps and hope the pain will go away with time as the tendon/joint repairs
Other than that, doing whatever I can to help my body, I just work around the most horrific symptoms
hobble on one foot, go down the steps backwards if forward is too painful, etc.
maybe it is not the best way of dealing with all the symptoms, but it is what I do to get through the day and I have been doing that for 20 years now
IBS, for example, can get so bad you have to stop at the side of the beltway with all cars going by and relieve yourself in your business attire- but when you go to a gastroentonologist they just say you are fine, so what can you do?
my doctor thought I have a bone spur in my heal but x-rays don't show a thing - well spirochetes don't show up on x-ray - so for the most part I don't waste my time and money to go a doc anymore - they simply don't know anything and don't care to find out and don't help
also, the symptoms come and go - so unlikely to be a bone spur - painful as hell when on, though
I had such neuropathies that my whole left or right side would go numb down to my waste
a specialist wanted to remove the first rib on either side of my neck (to relieve nerve conduction issues into my arms - which went completely dead at times) - thank God I refused that major surgery, together with Carpal tunnel surgery (Basically cutting your ligament on your wrist and hoping it will heal back ok)
I am sorry, I am venting, I realize this
but it may benefit you to know that I was also often worried sick about what was happening to me - and I am still here
I think B12 and D vitamins actually helped with the nerves and muscle twitching
also, Lymenet information often helped - asking specific questions about a symptom or a supplement and getting some helpful tips to try something (always use your own judgement, and your doc, if you have one you trust, to confirm that something is probably safe for you before taking or trying)
prayer does not help everyone - nor does spiritual stuff, especially if one is so sick and nothing seems to help for years and years, I find
just being honest in case that helps someone - to hear another view point - it is not your fault if this is hard and seems never-ending
you are not alone
keep asking about questions you have - often others can give you clues, too, about what may be truely lifethreatening (heart issues, for example, that may be worth checking out with a cardiologist) and what feels terrible but has gotten better again for so many others
anyway - that has helped me the most: getting information that makes sense
may not be correct in the end, but worth considering and investigating more, so maybe something can be done to help yourself in the area of damage to the body
hugs and love!!
-Harmony
Posted by Harmony (Member # 32424) on :
PS: that pain in your toe could be the start of toe nail fungus
with compromised immune system and being on abx, these things (fungi, yeast) can get an advantage they don't normally have
my toenail fungus started with shar pain around my toe
your other nerve pain in the foot sounds like it could be nerves being attacked by spirochetes, so the sharp pain (like a tooth ache, I know) could be simply from that
but you speak of "over-trimming the skin" and I had a lot of calluses on that toe that got attacked by the fungus
then the doc I saw said it was "that stuff growing on you" i.e. the fungus, not just normal dead skin on the foot/toe
when he said that, it made sense - I never had that much dead skin around the tip of my toes before
you may get help from a dermatologist if it is a toe nail fungus
I did not want the "feed-though" medication since it is hard on your liver (got enough of that, thanks a lot) so I opted for a new paint-on drug that is expensive but has a 40% chance of getting rid of the nail fungus (it is called Jublia) and a crème for between the toes
it has gotten a lot better and pain is gone - still working to get rid of it all together
you may not have a toe nail fungus - but worth checking maybe, if you think this may sound right
Good Luck!
Posted by Bartenderbonnie (Member # 49177) on :
When feeling poorly, I baby my body. I stay in bed, relax, try to nap, everything not important can wait.
Been down this road before, don't feel guilty about not being productive. Remain calm, this too shall pass.
Lyme is a journey. Many good days, many bad days.
Sufferring from bronchitis. Black on antibiotics, inhaler, among lots of other things that I started in order to avoid this constant relapse in Fall. I will remain sick for many months now.
It is my hope, once I am able, to get back to gym, to resume weight-resistance exercises. This helped me so much towards having months of almost ALL good days. It builds up immune system and the results show in relatively short time. Healing wishes.
Posted by 6Hypnone (Member # 47629) on :
My thought based on something I read earlier, was that it's average to feel better after 2 years of treatment. I'm still waiting for that.
Harmony...did you take any Fluoroquinolones? That could account for any tendon issues.
I spray my feet with magnesium everynight, same kind that's in remag. No clue if it does anything. Too scared to put that one foot in the epsom bath now since that pain happened. So guess I will just do the one foot.
It's the severity of the pain that causes anxiety. And I can't live with that anxiety forever. I'll have to 'get out' if I don't start feeling better. I need some proof that I'm healing SOME. Even a little. And I have none.
I do try to take it easy when I dont feel well but it's sporadic usually. Not predictable in any way.
Posted by MissVictoria (Member # 45232) on :
Everyone heals in their own time. If you've had it for a long time, it will probably take awhile to get better. But you will get better.
I had Lyme and Bartonella for my entire childhood and teenage years, and I wasn't diagnosed until the summer after 7th grade, and I was better after four years of antibiotics.
A lot of people try to look for quick fixes for Chronic Lyme, but there are none. Be patient. It is a journey and it takes time. Slow and steady wins the race.
Posted by 6Hypnone (Member # 47629) on :
My lyme doc guesses I may have gotten it actually around 6th grade. I didnt get dxed until I was 38. I'm 41 now.
Posted by Lymetoo (Member # 743) on :
Have you been to a podiatrist?
harmony... You are welcome on the ReMag!! Posted by 6Hypnone (Member # 47629) on :
Me? Oh yes several times. First they said I had tarsal tunnel, now they say I dont. They do say that I have flat-ish feet, and no fat padding. And yes i'm wearing orthotics. One said I had some tightness around the nerves in the foot. Another one's ultrasound specialist said i did not. Story of my life. I feel totally out of control. I dont know what' is causing what or who to believe.
Read someone's blog on Allodynia and how she's in terrible pain all the time...and just a month ago, in the shower, it was painful when the water hit my back. Now I'm scared of getting that, worse.
Neuropathy and Allodynia were the 2 symptoms my mom had from diabetes (for years in the latter part of the first 2000 decade, and beyond. She's passed now), that scared me the most. I thought, I never ever want to get that. But I'm not diabetic. So unlikely.
WRONG! Anxiety can be terrifying.
Posted by Robin123 (Member # 9197) on :
I think it can take a while to figure out what to do with symptoms. Best to be seeing a smart doctor/health professionals who can help figure it out.
It takes time to try treatments.
It takes a lot of patience!
I think taking a lot of deep breaths can get more oxygen in and calm down anxiety.
I also try to put things in my day that I enjoy. I find that doing this changes my mood to a more positive one.
Posted by 6Hypnone (Member # 47629) on :
It just appears to me that so many know what's causing things for them as well as what infections they have. And when they're gone. All of which to me personally, and from what my doc has said, seem impossible.
![[Frown]](frown.gif)
)...![[Smile]](smile.gif)