This is topic No hope in forum General Support at LymeNet Flash.

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Posted by Mountainsky (Member # 51857) on :
Has anyone learned to accept there's no hope?

I'm on vacation this week out of state and I'm more anxious. Not relaxed. I'd rather be working. I'm exhausted and can't do alot here.

When I work I'm distracted from this ugly life.

I'm seeing happy couples, families, women pregnant, holding babies and know the chances are very good esp at my age it's not gonna happen, or it'll happen but be a disaster.

I'd give anything to go back 10 years. Hell I'd go back 2-3 years because that's when the **** hit the fan when I began treatment and I'm only getting sicker.

Everyday I mourn my old life. I had a telehealth appointment with my therapist yesterday and told her all this. She's good but it doesn't take away or change my situation.

I can't look forward to anything, instead of being excited it draws fear. I don't like facing my birthday, new seasons/months, holidays. This pandemic didn't help either.

Another year wasted it seems. In pain, no progress or improvement.

I see my LLMD in a week for a followup. Mixed emotions with that.
Posted by hiker53 (Member # 6046) on :
I certainly have bad days and days where I think about things I can't do anymore or see what others can do that I can't.

But I never give up hope.

Here is what helps me:

1. Everyone day is a new day and I approach it that way.

2. Every day I write down blessings for the day. Nothing that was bad, but only the good. It might simply be seeing a hummingbird or talking with a good friend. Then I write my prayers and I can look back on what has been answered.

3. I have a personal relationship with Jesus Christ and that has saved me (literally).

4. I found a small church and even though I don't attend right now due to Covid, I talk to the parishioners and the pastor and ask for prayer.

5. I found a women's group Bible study. We support each other and I have discovered they also have trials in their lives. The trials are different from mine, but no less harsh.

6. Listen to uplifting music.

7. I remember that I am not Lyme. I just have a disease and I will not let it rob me of joy.

This may sound all preachy, but I think the key to getting better is a relationship with the Lord. And that doesn't mean automatic healing.

"Be joyful in hope, patient in affliction, persistent in prayer." Romans 12:12
Posted by Mountainsky (Member # 51857) on :
Nobody wants a wife that's chronically ill and mentally handicapped. That's not fair to a child too.

I hurt and disappointed too many people.

Fake it till you make it
Posted by hiker53 (Member # 6046) on :
Mountainsky—Life is not always fair. No one promised us a fair life or that all our dreams will come true.

I was single before Lyme and am still single. That is okay. My brother has a Parkinson’s like disease and didn’t get married until his late 50’s. So, you just never know.

You have to find ways to channel your energy into positives.

And who knows what blessings life will bring your way.

[ 09-21-2021, 01:15 PM: Message edited by: hiker53 ]
Posted by Mountainsky (Member # 51857) on :
Sorry to be so negative Hiker.

I told my therapist and a family member that I feel like I died. I'm gone mentally but physically here.

I've been off all lyme meds since around July 4th and only feeling sicker.

Why is this happening to me? My life was stolen.
Posted by hiker53 (Member # 6046) on :
It is easy to say, “why me?” Much harder to say, “why not me?”

Try not think your life is gone. Focus on the positive.

Blessings to you.
Posted by Mountainsky (Member # 51857) on :
I try to think positive but it doesn't help.

My therapist said my brain is wired differently and that I have trauma-informed responses and reactions.

I think it's more than that.
Posted by Ann-Ohio (Member # 44364) on :
One positive thing: You are seeing a therapist. So many people can't because of cost, insurance etc.

That makes you a lucky minority.

Hang in there. Hope you can share your concerns with your doctor and see if you can get help there.

Try making a list of things for which you are grateful.
Posted by Mountainsky (Member # 51857) on :
Sadly I feel no better seeing a therapist. It's not her fault though.

I've been on vacation all week, been bed-bound crying. In so much pain physically and mentally. I told my parents sorry I'm a burden to them. I just cannot go out because I can't keep up. They've been doing a ton of day trips and I can't go. My body feels like I'm 90.

My anxiety, depression and paranoia is worse.

I don't believe this is Lyme anymore.
Posted by Bartenderbonnie (Member # 49177) on :
Please don’t give up hope.
The fact that you are still able to work while being off Lyme meds is a tribute to your inner warrior self!

Something is missing in your treatment protocol so I would suggest starting from scratch. Here is Dr H. at a Lyme diagnosis and treatment summit. It is 1 hour long and watch with paper and pen in hand. He packs ALOT of Lyme and co-infection info quickly. I guarantee something will pert your interest and maybe will be the key to your moving forward.

Also when I’m feeling down, I try to find humor through the suffering. Nobody does that better than illustrator and Lyme sufferer David Skidmore, author of “Lyme Loonies.”
Posted by Mountainsky (Member # 51857) on :
It's alot more complicated than that.

Just too burnt out.

Been told I'm too weak and not a strong person. Been laughed at too many times. So that comment of my work status means nothing
Posted by Bartenderbonnie (Member # 49177) on :
I’m sorry Mountainsky, but that’s not how it works here on Lymenet. WE NEVER GIVE UP ON ANYONE 💚

We offer H❤️PE and SUPP❤️RT ALWAYS !!!!!

Whoever called you weak, not strong and laughed at you, they are victimizing you. This has left you with the assumption that this is your role in life.

You are NOT powerless. . . but you have deep feelings of powerlessness, which is understandable.

Recognize you are not a powerless victim. You feel this way because of the genuine difficulties you now find yourself facing.

There is goodness around you and good things in your life. Your life is of great value. Helplessness is not who you are. That’s why Lymenet is such a valuable resource because it is not healthy to try to ‘go it alone’ and suffer by yourself.

You must become your own health-care advocate.

I have a canvas beach tote that contains all my medical records, tests, correspondences, etc. I used to take it with me to every doctors appointments. It now weighs about 30 lbs (since 2013) so I take my monthly planner with whatever I feel is prudent. I want explanations and treatment solutions for everything.

There is no roadmap for TBI’s but there are many options.

What are your plans in moving forward towards wellness?
Do you want a second opinion?
Why do you believe good things will not happen for you?
What do you need help with?

Write down questions and actively engage with your LLMD.
Never give up, keep fighting.
Posted by Mountainsky (Member # 51857) on :

I didn't think this far out I'd be WORSE. I don't know what's normal or not anymore.

I hear and read horror stories of ppl going bankrupted and losing their life savings to get better. Maybe I should stop reading them.

It's terrifying. I long for a better normal life. I'm 36.5, not getting any younger. I'm watching my life flash before my eyes.

I don't know what will come this Tuesday. I have a list of many questions and concerns. This isnt just gonna be a quick usual followup in and out, no. I want this appointment to be comprehensive. I'm not ****ing playing around when I tell my LLMD, my family and my friends...I truly feel like I'm dying. I am suffering greatly. I cannot live like this.

There's another LLMD I looked into that is actually down the road from my job. Alot more $ though so I need to weigh my options.

I can't keep throwing $ at these physicians and put more meds/herbs into my body unless we have a definitive answer of why I am still sick. Another confection? Something totally unrelated and more serious ?

With every protocol I got sicker, assumed it was herxing but had my llmd and other ppl on this forum and another Lyme forum say it wasn't herxing, it lasts too long and I have no relief after, regardless of detoxing.

I've been off Lyme meds for almost 3 months now and I have no relief.

I was away on vacation this past week and cried more than I have in a really long time. I cried more than I laughed. I couldn't do anything, was in bed most of the time.
Posted by Robin123 (Member # 9197) on :
Hi - was looking through posts tonite and saw yours.

Wow - sounds like you're having a rough time. What happened at your last LLMD appt?

I find for myself I always think more negative when I'm in pain, so the first thing I want to ask you is are you taking any pain meds, and if you're not, if you could. Or anything else you can do to lower the pian level. Just that step alone can start to help.

You said you are 36? That's still young. I went 25 years in the dark, age 27-52 before I found out. During that time, I would try anything to see if it made me feel any better, and sometimes, yes, I found things that helped.

Then of course when I found out what I had, then that relief exploration continued. I have had to try things to see if they help me.

Curious to hear what happened in your latest discussion with the LLMD.

One idea, when you say you get sicker from treatments. I don't detox well, so my Lyme doctor had me do the 23andme methylation test which shows how well or poorly we detox. They did the bloodwork and then I recall GeneticGenie sent me the interpretation.

This test can show the details of the 4 methylation cycles and where we might be missing genes for crucial methylation cycle enzymes. Then we can supplement in those areas. Just an idea for some more info.

I have been in bed too, for years. So, I read a lot, and I listened to the radio and to music. Are there activities you could do while in bed that could be of interest to you?
Posted by Mountainsky (Member # 51857) on :
Hi Robin,

Thsnks for reaching out.

You know I mentioned this to my LLMD ( MTHFR I believe what you're referring to?) she shrugged it off and said she doesn't think I have that.

It seems whatever I bring up to her it's of no interest.

If you've read my latest post, she did a few histamine/inflammation tests. All flagged. But I don't believe it's enough.

There's more, but what is it?
Posted by Robin123 (Member # 9197) on :
One indication of MTHFR is when we have trouble detoxing. Do you know whether you do?
Posted by Mountainsky (Member # 51857) on :
I brought it up to my llmd as a possibility ( as in why I cannot get better) and she shrugged it off. Never tested me.

Could it be possible ? Absolutely
Posted by Robin123 (Member # 9197) on :
Any chance you could check in with a different LLMD who is aware of detox issues? My Lyme doctor initiated the investigation and indeed, my Genova Diagnostic and 232andme tests showed detox difficulties. The 23andme test pinpointed the missing methylation cycles.
Posted by Mountainsky (Member # 51857) on :
Robin look at my latest post on "medical questions"

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