Topic: Drop dead feeling - need Lyme veterans to answer this one
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Well I have been at this for 4 years now.
My main issue the first 2 years was severe pain, nerve pain specifically.
In treatment the entire time.
Then at the 3rd year, the psych symptoms started, so I had excruciating pain and brain fog to the hilt, tremors, weakness,etc.
Year 4 now of treatment and the past 3 months I feel like I am getting even worse.
I have to be conservative w/abx because they ream the nerve pain. I started Bicillin IM - very low doses (done the shots in year 2, but didn't stick w/it long enough) for the past 6 weeks and OMG, I am so sick...weak, heart palps, nausea - quite literally a drop dead feeling.
The fatigue the shots cause (they never did this before) is absolutely debilitating. Oddly, they relieve some pain like an anesthetic to my nervous system, but knock me out completely and I become totally non-functional.
I seriously feel so sick and fatigued I don't know if this is a herx or this is gonna kill me now. I have backed down on abx the past week, but no improvement. I have had every symmptom this past week you can think of, from dizziness to pain to fog, to weakness.
Does anyone literally feel like they are going to die at times, like this is it, your body is just shutting down? This is the scariest feeling yet. I am amazed when I wake up each morning lately.
I have an LLMd appt coming up in a couple weeks, but am dragging and so sick I hope I can make the 2 hour ride. I honestly don't know and am getting to the point that no one can help anyway.
posted
I am sorry to hear about your long struggle. Don't give up, as you are treating the disease. I have to say that I am continually flabbergasted at the resilience of this bug.
I was diagnosed 5 years ago, and went through intensive treatment. I remember that the main "herx" I would have is extreme fatigue during IV treatment. I would fall asleep every time....for hours.
This year I got the neuro symptoms full force.
I have had the fears you state. NO, I do NOT believe the body is shutting down. Not at all! I believe the body is fighting back.
The neuro symptoms are the scariest for me. What I did during my scared days was write in my diary: I AM HERE.
The fact that you ARE HERE means you have another day to live, another day to GET BETTER. Your body is REACTING. We all have to have patience and faith. I truly believe that if we are here today, on beautiful earth, it is for a reason and we are being given a chance. Remember this is an infectious disease-that means the little bugs can be killed and our immune systems CAN respond. You can do it. Bless you, and know that you are here for a reason, you are meant to be.
Posts: 172 | From ohio | Registered: Feb 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I know I have mentioned this several times lately, but it comes from my own experience and I am still early in figuring it all out.
One of my early main symptoms was drop dead fatigue, along of course with pain and the other lovely array of lyme symptoms.
After almost 2 years of treatment everything got somewhat better, then I noticed I started having fatigue "episodes". Like out of nowhere, the fatigue would just hit.
Found out that Lyme in the brain had triggered a mood disorder. This sudden fatigue that I contributed to LD was actually coming from the mood disorder.
My moods were up and down, but I had mostly ignored it thinking when I got over the lyme this would go away as well.
Started taking a mood stabilizer and now the fatigue is starting to improve. I am still very early in treating this, so we will see how much improvement is made in the next several weeks. Just got to theraputic dose a week ago; had to titrate up.
This might not be your problem at all, but it is one idea to consider; especially if you notice that your moods change easily.....either depressed mood to normal mood or depressed mood to elevated mood. Another symptom could be ruminating or having obsessive thoughts.
Just something to consider!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Thank you to both of you.
Dali - thank you for your uplifting thoughts on this, you have encouraged me and I know why you are here
sutherngrl - I have not tried mood stabilizers, I have heard some say they work well. Interesting fatigue is related. Which med works best for you?
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lymebytes, at this time I am trying Lamictal. So far so good!
I wouldn't have thought that fatigue was related either, but in hindsight I can see how it can.
Even healthy ppl that are depressed and anxious get fatigue and pain. Not saying that our pain is psychological.....not saying that at all!!! Just that mental issues can increase these symptoms. Thereby making the symptoms we already have even worse.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thank you...yes, we are all here for a reason, we can all get better. I have had Lyme disease for 23 years...most of that time undiagnosed. And maybe, because it was undiagnosed, I went ahead full force with all my dreams, and I can say that even with Lyme I have had a wonderful life. Now I am being challenged again, but I know that our bodies can respond. Just do your best within your physical capabilities and remember every day that you are intreatment you are moving toward a healthier future. peace...
Posts: 172 | From ohio | Registered: Feb 2010
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey there Bytes,
Well, you knew that i wouldn't leave you in that boat alone, didn't you?
Yes...have just had a new PICC implanted and am at the start of week 2 IV Invanz...i feel pretty much as you describe.
Have not had debilitating fatigue for years, but I have it now....and the weirdest part is that i can only sleep in the early morning or afternoon. I spend the night tired but tossing and turning.
Yes to the dizziness, drop dead feeling, and an excruciating headache....weakness etc....
lot's of weepiness too, but i attribute this to being in my 3rd year of treatment with virtually no response.....
evidently our bugs are tough sons of guns Bytes, we have to be tougher
no answers, as usual, but wanted to let you know that your friend is still with you...and still searching for answers....
hang on kiddo!
Posts: 3975 | From usa | Registered: Aug 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
feelfit - Will we ever see the shoreline? This boat is too rocky and we have been at sea MUCH too long. Do you ever wonder like me, could a bacteria really be this resistant, or I have to be on the wrong path? But nothing else fits! I am hoping and praying your IV changes everything for you. It blows my mind, even 4 years into this, to have life stolen like this day by day. There can't be a battle worse than this..or is there? Hugs ~ D
sutherngrl- I have actually had my LLMd talk about Lamictal and had heard others say it does work. Thanks I am going to talk w/him further about it.
dali - amazing you have lived w/this so many years and still have a great positive attitude. Thanks again for your inspiring message.
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi Lymebytes-
I am so sorry you are suffering. I know EXACTLY how you feel. It's so hopeless and seems like it will never get better.
For my own personal choice, I decided to stop all abx because I didn't see any major improvements on them after years...just felt like I was trapped in a living nightmare of pain and fatigue...
For what it's worth, I started just doing whey protein and high doses of Vitamin D....I've never felt better....My theory with me is that my immune system was out-of-whack and overreacting...In fact it felt like a constant, pulsation throughout my body...
Am I well? No...I still have problems with overexertion of my muscles...still have twitching...still have stiffness...
However, it's really night-and-day now in terms of the CONSTANT, UNRELENTING suffering I was in....Ex. I've been able to help my mom move and work on the remodel of her home...If I overdo it, I feel like hell the next day...But, the difference is that a year ago I didn't even feel like driving over to her place which was only 20 minutes away...much less packing a box....
The real thing I'm trying to say is that you should always believe you can get better...maybe the whey and Vitamin D could help you...maybe not...maybe it's something else....Just keep trying new angles....
It took me about 2 months on the Vitamin D and Whey before I really saw the dramatic improvement....(I felt worse when initially starting it and slept ALOT!!!)....
I'm sending you a hug and letting you know I CARE that you're hurting and I'm so sorry....Hang in there!!! I know there's an answer for you!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Lymbytes, Me too! I have the same symptoms you are describing nd I am off anbx for now. I did go to LLMD and one of the problems is my heart. Who knows what everything else is. I am so sorry you are suffering. You are not alone. Blessings, justjan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
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