posted
Good morning, some of you saw my post recently about d/c treatment. Im angry. I have so much bitterness, humiliation, worry, rage and sadness that I'm taking it out on the wrong people. Its not just effecting my body and mind but other things as well.
Sometimes it feels as though I'm at the start of a breakdown and it's all a waste. Whats normal and what's not? Where's the light at the end of the tunnel?
I came across a post about a LLMD who passed very recently due to chronic lyme disease, Neil Specter. It showed a picture of him with the words "keep fighting in his honor". Was that a sign? Or just an odd coincidence?
At the end of the day I have to know it is worth it no matter how hard it seems and when I can't convince myself otherwise, or that there are many ppl due to financial constraints that can't even seek an LLMD, or will never have the connections/advocates I did that assisted me and gave me knowledge and advice pre-treatment and beyond.💚
My next appointment/phone conference with my LLMD is next Tuesday. 🙏
Posts: 597 | From Massachusetts | Registered: Mar 2019
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Hi Kristyn. Didn't see the post you are talking about, but Lyme is hell. With treatment, though, the symptoms get better. The inflammation can cause many psychological symptoms, and reducing the inflammation can help so much with reducing the symptoms.
What helps me with inflammation is the Stephen Buhner herb Japanese Knotweed.
I hope your appointment goes well. Don't give up. With time it gets better.
posted
True, for any of us to be grateful if we can access LLMDs. Also to be aware of advocacy efforts to help others to access the doctors, like the Lymelight Foundation, for example, that gives grants to anyone age 25 and younger to get treatment, and now has done so, in the millions of dollar donations.
I personaly think it's most helpful to keep focusing on solutions, for ourselves, for others, for others creating them. And Neil Spector did that - he was an example of someone looking for treatments.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I would suggest you to go running or have some exercise from time to time. I know that aerob exercise are some not recommended but it help sort out thoughts. And you can do anaerobic exercise hard also. Another thing that helpful for me was sauna. And of course Japanese knotweed. Don't be afraid of increasing dosage for trying how you will feel. In time, you will notice the things and the drugs that are more helpful for You. All have their unique organism and also lyme.
Don't put your hope only on your doctor. They're only trying us to help win this disease, do they best they can. I remember how many times I prayed that the doctor would help me best. Often it was ending that I got disappointed.
Posts: 5 | From Poland | Registered: Nov 2014
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posted
Marcin, I do exercise, within reason. I walk in my neighborhood when I can. The very last time I did it it took everything out of me though, yes ive read aerobics should be avoided. Our state just entered phase 3 and gyms are now back opened. I've heard/read many articles on weight training for ppl in treatment, my LLMD agreed.
An update from my appt the other day. I was never tested for Bart and have expressed many symptoms of it, more so while in treatment. They took 10 tubes of blood from me yesterday. I feel like it was a waste of the last 14 months in treatment since Bart could have been playing a huge part in this all along.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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it's never a waste if you keep working even if it seems grim at times you still learn something that allows you to move forward in some way - and that is of great value.
Posts: 245 | From UK | Registered: Feb 2020
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posted
That's why when I go for a jog I take a bunch of antimicrobials, before and after. Otherwise I often got flare up and can't sleep. But it's me . I do some things very radically. I'm sorry, I couldn't imagine how some of you people go through it. I am quite young, and it was and it is still a hell for me. I have used to jogging hard and it's lifeline. BUT it could be tricky. Especially if you have not addressed the coinfections adequately...If you have it would not be a problem. Now I know the regiment for me was not good at the beginning, bartonella and babesia (or probably proto) was not hitted. Treatment was long, herxing weak, compared to later drugs and some symptoms get slowly worse. I was not aware of that, because it seemed to be the effect of herxing, antibiotics and bad bacterial flora. The doctors were not so helping at that point - due to symptoms I had were not so specific. But I don't think so. Later the symptoms get stronger but and I could understand better what was going on with me.
Hope You will find best and fast, good treatment. Best Regards!
PS. Take a bunch of sunbath for better frame of mind. It is v. helpful Posts: 5 | From Poland | Registered: Nov 2014
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. I do some things very radically.![[Frown]](frown.gif)
I am quite young, and it was and it is still a hell for me. I have used to jogging hard and it's lifeline. BUT it could be tricky. Especially if you have not addressed the coinfections adequately...If you have it would not be a problem. Now I know the regiment for me was not good at the beginning, bartonella and babesia (or probably proto) was not hitted. Treatment was long, herxing weak, compared to later drugs and some symptoms get slowly worse. I was not aware of that, because it seemed to be the effect of herxing, antibiotics and bad bacterial flora. The doctors were not so helping at that point - due to symptoms I had were not so specific. But I don't think so. Later the symptoms get stronger but and I could understand better what was going on with me.
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