robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
two years of heavy duty ABX ....... saw some improvement but no where near recovered or remission ......... statred going down hill slowly a few months ago. .... been feeling like pure hell the last 3 weeks ..... old symptoms, new ones and just can't figure out what the heck is gong wrong ....... taking an ABX break for 2 days now and feeling even worse .......... I don't thnk I can do this much longer........
what do you do when you get get desperate? robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
I'm so sorry to hear this, robi. Can you call your LLMD? I really don't know what to tell you. The desperation is coming through loud and clear.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Now, I know what you are going through because hubby has been there many times in the last 5 years. This is knid of where he is at right now in fact.
In my opinion, the first thing to do would be to make a list of your most severe symptoms -- do any of them point to a coinfection?
I honestly feel that coinfections are what holds a lot of people back. Even if you have treated, maybe they are still there.
Next question would be, "How is your G.I. function?" Leaky gut is real and so is Candida (yeast) -- if you have serious G.I. problems there is no way to know what is really going on in your body elsewhere.
You said you started going downhill a few months ago -- did you do anything differently at that time -- change your meds or any supplements?
In my opinion, a 2 day break is not enough to rest your body and really give you any clues. Hubby always takes 1 or 2 weeks off in between meds and he usually stops if he has severe diarrhea.
Have you tried herbs or colloidal silver or any other alternative treatments -- perhaps your body is simply rebelling against all the drugs?
You might want to seriously try something different for a couple of weeks or months while you weigh all your options.
The other critical factor is your bloodwork -- have you had a thorough workup lately -- perhaps there is a clue there that would point to an organ that is severely stressed or there could be an indicator that would point to a nutritional deficiency or even a coinfection (LDH and Bilirubin frequently elevated with Babesia for example).
What about an epsom salts bath or a massage or even a colonic (as GiGi suggests) -- this could very well be a toxin issue.
If all else fails, list your med and symptom history here on LymeNet and I am sure others will chip in with lots of suggestions.
I am not a doctor and this is not medical advice, just the voice of experience.
Hope you are feeling better soon.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Desperation is not good. It is the start of a downward mental cycle - once that gets growing has a life of it's own and after a while it's very hard to reverse.
Do you have a support system (close friends) that can help you get thru this emotional time?
You have to turn this around before you can even look at things objectively (separate out symptoms)and make decisions that will benefit YOU.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Oh no---This is really disturbing to hear from you Robi.
I agree that it can be the disease itself doing nasty things to your mood. It could be that you are ABOUT to make a break thru and it is their dying plea to get you to stop the ABX so they keep holding on. I feel this type of thing with Yeast---I know when I crave sweets that it is the YEAST craving it, not ME and I refuse to give in, no matter how strong the urge.
I am reading a very interesting book called-- Faith, Madness and Spontaneous Human Combustion; what Immunology can Teach us about Self-perception. By G.N. Callahan (got it at the library) He's very sexist in parts...so if you get it you have to ignore those parts. But he is awesome at explaining many diseases and how they affect us in ways we dont understand. I dont agree with everything he says, but I am learning about immunology and myself and my diseases.
I just got done the chapter about "madness" and it turns out some of it is about Syphilis. tada. And syph, as you know is much SIMPLER than Lyme. He was explaining about another disease that actually makes ants become suicidal. The ants with the disease do things that put their lives DIRECTLY in jeapordy. THe ants without the disease steer clear of these hazards.
The DISEASE makes people think, feel and do things they would NOT do otherwise. NOT the fallout from the disease, but the DISEASE itself. And we know the fallout from lyme itself would drive a very strong and competent person to insanity alone.
How does this help you, geez, I dont know. But it sometimes helps me to remember that there are friggin bacteria in there makin me feel this way. That I am NOT a depressed, angry, bitter, hopeless person---that the DISEASE is all those things, not ME as a person.
Otherwise, I just totally relate to you. It has been one and a half years since my relapse and although I havent been on ABX and other treatments for that entire time, I am not seeing any improvement at ALL.
NOT looking back or forward seems to be the key to emotionally dealing with this disease. I mean the true true true zen of being here and now. You can NOT look at last week, yesterday, last month, last year, 3 years ago.....nada. You can NOT look ahead to ANYTHING. You must just live right here and now and give your body and your soul what you believe it needs right now. This is so hard day and day , year after year. For me it means, no job, no children, no plans for buying a house, no stability, no anchor, and nothing that the rest of the world looks at as ACCOMPLISHMENTS.
But instead, I have to find my own accomplishments. Sometimes they can be as simple as today I pooped. No kidding. Hope it made you smile, but for reals---it is very simple stuff.
Sometimes if there is too much outside pressure it can be very hard on my mental stability. Like I just got back from big family stuff and it is always hard on me---what do you DO all day? You look so good! How come you can----but then you can't ------? How long is this going to take? What if you just stop taking all these meds? You sister had lyme and isnt like you are.
Have you had too much familial or public pressure lately? That will do it.
OKay, now I am rambling, trying to get you to hang in there. Can you take a break from regular life and go to the beach or somewhere different for a day or two? Sometimes that helps me. As my friend puts it: get off campus.
I dont have any answers, I just have empathy and concern. I hope you can muster the strength to do something nice for yourself today and realise that you are a really valuable person to many of us here.
take care, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Robi - this is the seasonal change from winter to spring. For the past few years at this time I just wanted to be in a cave or coma . April has been the worst. Big frontal changes. Symptoms shifting and changing big time. I feel so sick right now, muscle trembling, new pains in the middle of my buttox and top of back of legs, complete dizziness, confusion, nausea all through the month of March, spatial problems, verbal confusion, slowness talking, out of balance, worse muscle problems. Many of these were not here a month ago. My acupuncturist has been helping me big time with all of this. Yesterdays front knocked me off kilter yet again.
My acupuncturist notes a lot of patients with some degree of some of the above or people who get worse this time of year. The surging electric shock was horrible for me this time last year when I had it. When the season changed I felt better. This may be the cause of some of your new symptoms so I give you hope to hang in there for a short time til things stabalize.
-------------------- Nori Posts: 109 | From Virginia | Registered: Mar 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Robi
I hear your frustration and can relate completely.
I am so sorry to hear of your stubborn symptoms remaining.
If it is any consolation I didn't start to feel any real big improvemnets till year 3.
And I also,every year without fail,tank in april may.
Don't know why, but this seems to be a cycle for me.
I agree, like some people have expressed ,this disease is like a mental/emotional olympics. In that it takes so much time and patience to get better.
Hang in there dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Hi Trails, Just wanted to let u know that your post helped me big time. Brought me back to reality. I will see if my library has the book u mentioned. Robi,I hope Trails post lifted your spirit like it did mine. Hang in there. Big hug for u. I can relate as most on the board can. Healing Blessings to U. PS I am getting my neurotransmitters,hormones adrenals straightened out,I was in adrenal exhaustion as I bet alot of people with this illness are I was tested by Senesco. Blessings Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
What I would do is call my llmd.
But first I would make a symptoms list and by each one try to estimate the percentage you have gotten worse.
I know that is alot of work but it may emphasize to your llmd how bad things really are.
Maybe he will change your meds. I have been on a couple meds that just didnt help.
I'm sorry that things are so rough right now. I have spiraled downward a few times and I know its rough.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Robi? You there? You okay? Check in with us please, I am worried about you.
Also---I find that crying my heart out sometimes helps a lot. Putting on some music or getting in the car and driving with some poignant song on can really get the tears flowing!
Thinking about you today, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Hi Robi I am sorry you feel so bad. I notice that when the trees begin to leaf my symptoms get worse. Especially pine and birch trees. Do you have allergies? Do you take anything for them? My headaches are always worse in the beginning of spring, pain intensifies and I am even more 'dizzy' than usual. And the noise in my head would probably drive anyone else to the brink of insanity. Is there anything I can do to help? You can call me if you want to rant, I am a very good listener. email me if you'd like [[email protected]] Sharon
-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I am still here .......... I am still ......... thanks for all the hope and replies .........I just don't have any energy to reply to all yu your great, caring and kind responses right now......... please know that thaey are all deeply apprecited.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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liz28
Unregistered
posted
Have you taken a cephalosporin yet? You said you hadn't been given one the entire time you you've been treated.
FYI, rocephin is a cephalosporin. So are omnicef and ceftin.
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Sorry but just when things look up, they begin to look down.
I was doing ok with the depression , so I thought, and then the LLMD gave me doxy.
Yet another herx and guess what. I just wanted to die, didnt want to be alive. Was in so much pain, everything I thought of was terrible.
The thing about this lyme herx depression is that its very tricky. It want to trick me into thinking everying is bad evil and will fail.
I look at TV and I see people smilling eating, I say ohh they must be evil sinners. How sick of them to be happy when Im miserable. And then I get these terrible thoughts. I see these people and just think (what if a bomb went off)
I think its the lyme trying to make me destroy others and then myself. Its very sick and strange.
Then when the herx clears I feel more happy , more sane. what a way to live.
Just the other day I saw a kid at the strore with his father, this is a kid 11 years old that I know from a school where I work. It was a Friday and he was talking about sleeping over a friends house. I asked him if was going to get down and party, then I asked him if was gonna drink.
The kids 11, why would I say that, then I said o yea gatorade.
He looked dumbfounded and left. I was SO EMBARASED I broke into a sweat imediatelly.
Why did I say that, i should have never. Its the lyme screwing with my brain, and now the anti-biotics screwing with my brain.
I got so scarred I though that the father would beat me up. They just walked away.
I also thought about it 10 more times today. All in all I realize that regretting the past is a wake. Ive suffered enough.
Thats where faith comes in. Faith turn suffering into prescence, into light. We just need to get quicker with that part.
Good luck and GOD bless. We could all write novels.
Posts: 2905 | From New England | Registered: Sep 2004
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I know how you feel. We can't give up. We have to keep on truckin. Know there are brighter days ahead. Hang there. Much love sent your way.
Posts: 188 | From NM | Registered: Feb 2006
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