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» LymeNet Flash » Questions and Discussion » Medical Questions » Fear of Living this Sick for the Rest of my Life

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Author Topic: Fear of Living this Sick for the Rest of my Life
tickssuck
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Hi All,

I'm really struggling here. 14 months of tx on orals, 3 years sick prior to dx of Lyme, babs, bart, ehrlic, mycoplasma...of course, virus activity as well, hypothyroid, glucose elevated, BP elevated....pretty much falling apart. I know most of you relate.

I feel like hell. My neuro symptoms are out of control. Currently on doxy, rifampin, plaquenil...laundry-list of supplements (been on mepron/art and numerous other abx's in the past). After 14 months of tx, I feel like I'm spinning my wheels - getting no where.

Horrible neck pain, balance issues, buzzing/hyper nervous system, numb face/tongue, neuropathy, heart palps...

How does one stay hopeful? I feel bad 24/7, no real herx and improvement, just bad, bad, bad.

On top of the horrible physical stuff, I mentally am fried, just so scared that this is my life forever as I've really seen no change so far. Is there any reason to think IV would even help? I'm scared. Thanks for listening...I apologize for being a downer. TS

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adamm
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Re: your last question--Absolutely. I knew someone who the duck had given six months to live when she started tx, and, though orals pretty much completely failed her, she got to full remission on IV.
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Starfall1969
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Don't apologize for "being a downer."

That's what this group is here for, to support you when you're down and to give advice as needed.

I've only been in treatment for a couple mponths, but I don't see any overall improvement yet either.

I started workiing a temp job (sitting at a computer all day), and I have days (like today) when I'm afraid I'm going to collapse and die on the floor.

I get so discouraged, wondering f I'm ever going to be able to use the degree I've been working towards for 10 years.

I wish I could tell you when it will get better, but I just don't know.

This disease just sucks rocks!

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yanivnaced
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IV is no panacea. As you will see on these boards many who have tried IV Rocephin felt better but relapsed immediately when taken off. IV might help somewhat for your neuro stuff but you have to continue with orals again after IV.
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SoSublyme
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TS,

I feel the same way...I had a really positive attitude until I hit the year mark, then just constant fear and worry that I will never get better.

I know that having a positive attitude is so important for recovery, so I'm trying to find my upbeat self again.

Although in some ways I feel that my body is just falling apart with a new problem everyday, I can tell you that I have recently at least had some improvement with the overwhelming fatigue. So there is hope (I hope!)

Try to hang in there and feel free to vent anytime...it helps.

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KirstenS
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Hey TS,
I also have been mentally asking myself the same question. I have almost made the 2 yr mark of being on abx's and just this past weekend I just lost it.

I feel as if I am not where I should be and definately where I want to be.

Before treatment I felt as if something bad was about to happen to me and now I feel as if I am dying a slow death.

I came to the decision that I need a break from taking my abx's right now due to the fact that my digestive tract is being affected and I am not able to eat enough to keep my strength up.

My husband came to me and asked me to please take a break. He is so worried for me.

Little did we know that our whole family has been worried for me for months. I seem to be going downhill and getting weaker and more and more depressed.

I need to regain some stregnth back and some of my life and love for life back. I have become a lifeless person due to treatment.

So I am taking a break for now and trying to see how I feel from it. I feel it's like you're damned if you do and you're damned if you don't.

Thankfully my llmd also agrees on the break. Now to try and find myself again! It's time for some therapy too! lol....just got to love this disease...so many lovely angles it has...I just wanted to share that you I am right there with you.

Please feel free to IM me if you need to. I am going through exactly what you are And you aren't being a downer. You are being true to what this illness brings to the plate.

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dguy
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I can relate, particular after a setback. This process is not easy.

Lots of negatives go with this illness, no doubt about it. Try to accept that and move on. Count your blessings. Yes, we all have some.

I remember feeling sorry for myself when visiting the doctor one day. Then I saw another patient. She had been born without any limbs, yet now as an adult she was smiling and interacting with others.

The red flag in your message, tickssuck, is the lack of herx. That says to me either 1) lyme is not the cause, or 2) you need a different treatment. Lots of different treatments out there, and One Size does not fit all.

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aMomWithHope
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I want to give some of you hope........

The proctor to my son's AP exam saw me reading Singleton's Lyme Solution and asked me if I knew anyone with Lyme. We started discussing my daughter, and she told me about how she suffered from Lyme for many years with almost the exact same symptoms that my daughter has, i.e., constant unrelenting headache, severe body aches, complete fatigue, etc. She said she was very bad off.

She said she was treated with tetracycline for 18 months and is well now and doing great. She said she still has some residual nerve and GI issues, and when I asked her about treatment for any co-infections she didn't seem to understand that, so I am not sure if she was ever treated for Bart, etc. But the point here is that she said she is doing great and she looked it.

Eighteen months, two years, three years--I don't know how long one needs to go, but as long as there is promise of living a normal life again....I'm holding on to that promise for my daughter, and I hope that it comes to all of you as well.

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Clint31
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Remember they call this Lyme Disease "The Turtle Disease". It is a crawl to the finish line.

People do get well. You're not likely to find a ton of them in here. People that get well get on with their lives. The only people on here are still struggling (mostly). I hear stories of hope all of the time, people who beat it. It does happen. Remember that. It helps me keep going.

My girlfriend works with a guy who is around 40 and he got well. He said the key isn't diet or supplements so much. Nothing magical. Just the right treatment and a doctor who is aggressive. People do get well. The longer I'm sick I hear more and more stories of people who escaped the darkness. Just have to tell yourself you will too eventually.

--------------------
DX'ed Lyme Disease: 7/7/2008
DX'ed Babesia, Epstein Barr, Liver Parasite 8/15/2013.

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Wimenin
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...Its called faith.... The best thing you can do for yourself in your treatment is have a positive attitude.. Your body reacts to your mind. You need to stay positive, even when you feel like death warmed over. You have to stay on sch with your meds, you have to eat right and dont cheat on your lyme type of diet, you have to get plenty of rest, you have to try to live a stress free life, ...but most important you have to have faith.. you have to believe.

Dont get sucked into wallowing around about your life. Dont compare yourself, your trx with anyone else.

Smile...and breath...and live!

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CD57
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I know about this too....I live in fear that I am a non-responder. My new LLMD and Dr S.D. had a write up on how some 10% are non-responders and they don't know why. I wonder if the key to this might be undiscovered issues (ie, mold poisoning or something) that makes someone a non-responder?

We don't really hear about this much.

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yanivnaced
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quote:
Originally posted by CD57:
My new LLMD and Dr S.D. had a write up on how some 10% are non-responders

additionally I have heard from another LLMD's that once in remission about 20% of patients need to be on maintenance dose forever or they will relapse. So there's a 70% chance that you'll actually reach remission and stay there drug free.

Unfortunately I think most LN members are in the 30%.

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feelfit
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yes, isn't that nice! TS, I know that we are in the same shoes.....more meds, med switches, no change.

What else can we do except try all combos and then maybe switch directions. I am lining myself up for rife and herbs. At the 2 year point and need to start to consider the effects that these heavy dose abx has on the body.

I have begun juicing and eating all raw except for dinner.

I hope that we find our answer sooner than later.

Hang in there friend.
feelfit

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Nexis
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I don't know how much this advice helps yet its a good idea if you can get a second or even several opinions if you can afford it. Make sure that your LLMD is a member of ILADS, or contact them to refer you to a member/doctor in your area or nearest.

Also other co-existing medical conditions and occult infections that has not been address could be blocking the meds from working or preventing you from full recovery. This was something that was addressed by the ILADS.

We are all in the similar life situation. We all know and feel what a nightmare this can be, yet you just got to keep going/moving, yet its absolutely normal and necessary to have doubts. These tick-borne illnesses is not fully well understood, and we are really, the mystery generation for the medical community as well.

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kreynolds
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CD57,

I guess I would be considered a "non responder", there are probably more "non responders" than we know.

Myself I haven't herxed in 2 years!! I am on some AGGRESSIVE treatment, but its like the IV is water and the orals are water......

I guess I am part of that 10%, but I can promise you I won't give up! [dizzy]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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Lymeorsomething
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No choice here, Ticks...just keep pluggin' away with different protocols and maybe something will stick...

I've been having a tough time too. All I can say is to run all the tests you can think of (within reason)...metals...hormones...parasites...rare conditions...and perhaps you'll find an answer...

Usually when there is no progress, there is an x factor gumming up the works...

I'm still trying to uncover mine...

--------------------
"Whatever can go wrong will go wrong."

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LisaS
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I'm in the same boat as you. When I read your post I was like, wow she sounds exactly like me! From neck pain to brain fog! I don't have the answers, just want you to know your not alone!

--------------------
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adamm
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Another non-responder here. Just got done with my second bottles of Mepron/Zith, and I've done nothing but get worse. I just have so many lapses in reasoning over the course of the day I can no longer keep track of them...

Seems like those in my family have nervous systems that are particularly vulnerable to spirochete infections, as I have a great grandfather who ded of neurosyphilis, a great uncle who just died of Alzheimers (prob. Lyme, especially since he lived on Long Island), and a grandmother who's currently suffering from the latter condition.

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tickssuck
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Yes...I guess that is my fear, being a "non-responder." I think, like feelfit, I am going to give it more time; but, if I find myself at the 2 year mark...I'm just going to have to look at other treatments. I also want to take a break soon from abx just to see how I feel. My LLND didn't like this idea, but I think it could help me evaluate things.

My LLND is a ILADS member. The latest strategy is to try low dose sublingual heparin to get my blood moving better; my blood work showed hypercoagulation - not surprising to me considering some of my symptoms. This is starting next week, if no results, I'll try the IV route as that's about the only thing I haven't tried as far as abx goes.

Thanks for feedback and encouragement. I hope we all find answers and see improvement. TS

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