I have lost total sensory system in my body. I feel nothing, no emotions, sickness, bathroom needs, nausea, motion from my head,nothing. Sadly I know this disease can do more. To top it off DR too.
Example: I have had the pICC in and not felt anything at all. Thank goodness no sepsis as i don't feel a fever either. Getting out this week.
I have no doubt it is in my heart too as I have been diagnosised a way back with heart murmur.
I had no longstanding symptoms before getting really sick in Feb 08. I mean this is a mess.
I am only 7 months into treatment and don't think I can take literally "LIke dead" feeling anymore. Sadly I could have made progress in other areas but can't feel that either.
I have had 3 months of babs treatment. I am perplexing to my LLMD and he is going to take it slower with treatment.
KIndly, BArb
Posts: 167 | From USA | Registered: Jul 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey Barb,
I went through a period of time when I experienced the same exact thing - I felt like the walking dead. I'm naturally a pretty intense person ...I feel all my emotions very intensely, but for about three months I felt nothing.
It was like the lights were on, but nobody was home...it was the worst feeling I've ever experienced.
I was also on very high dose meds at the time. When I came off all meds, within a week I was back to my old self. So, for me it was meds - maybe it could be for you too?
Did you say you have one more week of IV?
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
I hope things turn around for you SOON!! Sounds devastating. I'm struggling myself, but NOTHING like you!
I hope and pray you will find strength to continue treating.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Barb,
I hope that you hold out hope. Hopefully lower doses of meds will turn things around for you.
You are in a place that is very difficult, but hang in there and things will shift.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yeah, there's no rhyme nor reason for this stuff sometimes, Barb. I was a good athlete prior to lyme and now have been sick for 2 years. I have yet to turn the corner.
However, I've heard from some of the best that it can take a year, two, and even three to make a dent. Just keep plugging away.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Barb,
Sorry to hear you are feeling that way. Babs treatment can make folks VERY depressed; that feeling may be due to the treatment itself.
Are you taking malarone or mepron for babs tx? There are alternative babs treatment (clindamycin and quinine sulfate) if tolerating the babs treatment is too tough.
Hang in there, things will get better.
Posts: 2557 | From home | Registered: Aug 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Barb,
I have been thinking of you and wondering how you are doing.
Wasn't able to read the others posts.
But, hoping someone will read your post that has gone through what you are going through and give you hope.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Right Barb,
Most of us, actually, I have never read of another on here who cannot feel "anything"....besides you. I hope that if something grave needs attention, some part of you will warn you.
I think that i just sort of flew by that....that if you had a clot or inflamation in your picc...you would not have even felt it.
gosh, I can't imagine. Know that I am thinking of you and hope that this hell relents soon.
God Bless, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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bettyg
Unregistered
posted
barb
i haven't experienced this 1st hand; so sorry but glad to read picc is coming out this week!
best wishes, and DON'T GIVE UP HOPE; it's the one thing WE ARE IN CHARGE OF anymore.
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posted
Earlier I read about baby doses and it was more helpful to some. Perhaps this would work for you too.
First three months of this year were hopeless ones for me - I empathise greatly.
You are in my Thoughts and Prayers - Grace
Posts: 212 | From Arizona | Registered: Jul 2008
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I can't stress enough that I know the feeling and how scary it is. It happenened a few weeks ago again, to remind me it's not over. My doc added doxy to all,but then I realized I was due for my monthly cycle and how close it is to that. I am prescribed an ocd med daily and xanax that I take for when the feeling like that does come (no feeling). It doesn't happen often, but when it does, its the scariest feeling. I am on 3g rocephin iv, zithromax for bartonella and now doxy. Hold on.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Reading everyones support brought tears to my eyes. I have thought I am the weakest person to cry everyday from this.
Everyone here is truly special.
Kindly, Barb
Posts: 167 | From USA | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's absolutely normal (As a lyme patient) to experience what you're dealing with. Lyme and associated diseases cause the problem you're speaking of. The biological "deadening" of all wellbeing and emotion. It distorts and disturbs our biology significantly.
I feel very similar. It comes and goes, but generally a looming lacking is present in my experience of the world.
It does get better in time, but it's taking far too long.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
My God, I am truly sorry to hear this. I too have often found myself discouraged about txment lately, and really hear what you're saying.
However: I just got back in touch with an acquaintance who, though her prognosis right before she started Lyme treatment was death within 6 months, is now feeling, in her own words, "as good as new." She has been free of all symptoms for about 3 years, and yes, Babs was the last thing to go for her.
So just hang in there--this is a really great place with a ton of people that can relate to what you're going through, and people make comebacks from all kinds of complications related to this disease.
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Lack of Magnesium can sometimes cause heart arythmia. My daughter had a heart murmer years ago. When my herbalist read the symptoms of magnesium deficiency I called my daughter in and she was very defiecient in Magnesium.
6 weeks later when she went to the doctors, they couldn't find the murmer.
This is not medical advice, just sharing personal experience.
Gail
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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sorry you're feeling like this. symptoms of lyme are so varied. kmow that lyme is causing this symptom and try not to get upsey about this. i know for myself i get upset and think "i am much worse". i have to tell myself to calm down and switch my thoughts to "this is this crazy infection causing this and i will eventually get better" i know not easy.
would it help to treat the symptoms? like an anti deppressant? have you looked into low dose naltrexone?
you are not weak. i cry often. this disease is brutual. someone i know says lyme was worse than cancer. (he had both) we are dealing with alot and most people do not understand the complexity or difficulty of this disease.
posted
Hello.. I am sorry to hear of your pain and frustration and I too am at that point and am talking to my doc. The reaction from taking the meds is what keeps me DOWN and I stay DOWN until i come off the meds which he has allowed me to pulse one week on and one week off and the week off is so much better.. So know to that as my doc says the herx means it is working.> but that is not so helpful when you feel helpless and not able to get out of bed every day that your on it. He also has agreed to slow it down and I also know each med is so different. but overall I have always had such a hard time taking these meds and not ever seeing that light at the end of the tunnel year after year after year. I have done abx for 2 yeras and took a year off and now for another year and I certainly feel I should stay working on this but i see no improvements .. while on meds..? I hope you can find something that is a balance so the mind and emoitions do not feel so down. I have been told I may not be able to detox and there is a genetic test and I am looking into that... Maybe that is part of it. I do not know. God Bless
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posted
I was just Googling "neurologic lyme" and "apathy" the other night to try and figure out if the deadness I feel is a neuro lyme symptom -- and it totally is. It is also a symptom of other brain injury/illness.
I think I know what you're feeling. No passion, no creativity, just a deadening of everything. It's a really odd feeling. I used to be the most passionate, creative person I knew.
It's NOT depression -- it really is an organic neuro symptom. Hopefully it will pass with treatment. I totally empathize.
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