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Posted 11/2/2021 10:13 PM (GMT 0)
Hi everyone,
have been feeling really worn down with treating Lyme and co. It sometimes feels never ending and I almost feel numb to everything. I guess detached bc although I started with a new doctor and am doing antibiotics I don’t feel the hopefulness that I use to when I would try a new treatment in the past.

With earlier on treatments I was so happy to have a dx and treatment to be well again. Each time I’ve been less and less hopeful just due to lack of progress. I did cowden protocol then antibiotics then various other treatments acupuncture, chiropractic, herbals. Now back to antibiotics but it is different combinations than I did in the past. I had to go on disability almost a year ago now. Feels like a blur. I was having very bad pots symptoms so could no longer work. My brain feels so out of wack, can’t concentrate on something to save my life and a lot of difficulty remembering things so it’s been difficult to try different hobbies to keep me busy.

It really gets old after awhile continuing to treat this over and over. I’ve had some improvements at times esp the year before last I had months of doing really well but then had a really bad relapse. Maybe from stress idk. I guess just looking for some encouragement. You guys are the best on here and it’s nice to know their are others that understand and are going through similar battles.
Posted 11/2/2021 10:40 PM (GMT 0)
I know that feeling of being less positive about every treatment that passes, due to the lack of results or the amount of setbacks.

In the beginning you're full of hope because you have a diagnosis and there are so many treatment options.
Then one by one you mark them off for a variety of reasons:

- Didn't work.
- Too many side effects / couldn't tolerate.
- Made things worse.
- Can't get the treatment you need / afford it / not available.
- etc.

But even with several options still available, it's the lack of optimism that something will work that ultimately makes things so difficult.
Then the questions keeps arising:

- Why even bother?
- Will I ever get better?
- Am I one of those cases where it just won't go away?
- Is it something else?

I'm struggling with it myself and wanted you to know you're not alone.
Posted 11/3/2021 3:32 AM (GMT 0)
So I have similar problems of despair. This won’t always help or be enough to encourage, but I remember watching a clip from American idol where the contestant, who eventually won his year, said he grew up on a farm and when you farm if you’re lucky out of every 10 things you try to make things work better 1 will work. I suppose it made me feel better that there were people out here that habitually had such high rates of failure like me- that they made it a way of life and persisted despite it.
Posted 11/3/2021 12:20 PM (GMT 0)
it certainly can be a long road - and there are often many ups and downs - everyone here can sympathise

but progress is possible - many do recover and go on to lead full lives

It may even be that adjusting to the new reality and understanding the scale of the challenge is a good and natural part of the process to prepare you for digging deep and getting through it.
I mean you could consider the initial optimism - that you just needed to do a course of antibiotics and be cured ( i'm oversimplifying a bit but you get the point) was the unreal expectation part and you could now be in a better position than ever to face the job head on.

typically its the ones that keep going - trying different approaches till they find what works for them - that recover
- so you are doing the right thing. keep at it

stress can be a huge factor in these chronic illnesses - and i hear so many times how that has triggered a relapse for people - or even triggered the initial illness.

perhaps that is in itself a clue for you on what you could do to help yourself recover
antibiotics can only do so much at some point your immune system has to take over - and your story seems to point to wards stress being something that you are sensitive to - so what if you flip that around?
what can you do starting today to reduce stress on your body and mind?

-are there sources of stress in your life you can remove ? people? situations? behaviours?

-if you really cant remove them - can you mitigate the stress they cause you - with physical actions or coping strategies?

- if you cant do that - can you change the way you think about or frame these events in your mind so that your body does not suffer the same degree of stress from them.

- can you incorporate stress management into your routine in a proactive way to lower your background levels of stress? - eg meditation, yoga, walks in nature - all proven to improve immune function

it all takes more effort than taking a pill - which is often why people don't do it - but as we have been discussing
- recovery from Lyme is not easy we often have to dig deep in different ways - and therein often lies the benefit

there is a lot to go at here and it really does have the potential to bring really significant changes.

more power to you !
Posted 11/3/2021 2:37 PM (GMT 0)
Thanks everyone, these were very helpful.
Rainycloud-thank you for sharing although I’m sorry you have similar thoughts it is nice to know I’m not alone in that.
Bailey- thank you for sharing that’s an interesting story and way to look at it. Persistence definitely seems to be key although difficult to keep up.

Garzie- thank you for your thoughts. I’ve definitely been working to keeping stress down. I think a big part was Covid being such a stressful time for everyone and I was working in the medical field so it was enormous stress that was difficult to manage esp in the beginning. I do have to limit time with certain family members and that has helped. I was working with a good counselor who has helped me a lot and taught me a lot of great strategies but I lost my insurance several months back. I’m hoping I’ll be able to get back on some soon. I do need to focus more on controlling stress bc that is a big trigger for me .
Posted 11/7/2021 11:59 PM (GMT 0)
Hey Sarah, how are you feeling since your most recent post?
Posted 11/13/2021 2:46 AM (GMT 0)
Hey rainy cloud, I’ve still been struggling with my mood especially depression. A lot of negative thoughts coming at me and it’s been hard to combat them with the flares from the treatment. I just feel so awful and wonder when it will get better. Praying helps me a lot I try to do it everyday. If you or anyone else could say a prayer for me to lift off this depression I would so appreciate it.
Posted 11/13/2021 5:39 AM (GMT 0)
Hi Sarahjane,

I'm so sorry to hear that you are still struggling. I just said a prayer for you.
I want you to know that you can do this.
As hard as it is, you will not feel like this forever.
But I do understand that's difficult to see right now.
I think it's positive that you are aware that the flares are what are making the thoughts worse, because it's important to know what is causing it.
Please don't be shy to post updates. That way we can support you.
God bless you.
Posted 11/13/2021 7:23 AM (GMT 0)

Sarahjane09 said...
Hey rainy cloud, I’ve still been struggling with my mood especially depression. A lot of negative thoughts coming at me and it’s been hard to combat them with the flares from the treatment. I just feel so awful and wonder when it will get better. Praying helps me a lot I try to do it everyday. If you or anyone else could say a prayer for me to lift off this depression I would so appreciate it.

Hang in there Sarahjane !

You can do this!! 🙏🏽
Posted 11/14/2021 4:26 AM (GMT 0)
Thank you both for the encouragement. Today has been better with my mood, I think your prayer helped! still having to really work on those negative thoughts creeping in. I’ll think back to the past and it reminds of all the times I tried and failed different treatments. Not the best thoughts to be having when your trying to stay positive. I’m trying to write down in my journal all the things I’m thankful for. Get myself focused in on positive thoughts. Thank you all for the reply and prayers, it is so appreciated!
Posted 11/14/2021 9:32 AM (GMT 0)
You can do this Sarahjane!! 😀👍😀
Posted 11/14/2021 7:04 PM (GMT 0)
Hi Sarahjane,
Just chiming in with the others in encouraging you.

Some great thoughts have already been shared, and here are a couple of mine - please disregard any that may not be right for you.

Are you detoxing well? Have you considered combining treatments?

Understanding that it's a long road and walking that road are very different things, which is why it's super good that you are posting about being discouraged/in a tough place, so that others can reach out with words of encouragement.
Posted 11/15/2021 8:44 PM (GMT 0)
Thanks rainy cloud 💜
My moods been all over the place! I think the agitation in my mind has been a lot worse harder to deal with. I think part of it is just feeling bad. And my startle reflex has been ridiculous lately. Like my brain is always on high alert. Every little thing I jump at it’s kind of comical if it wasn’t so annoying lol.
Thanks traveler I have been trying to detox but I don’t know if it’s been enough. Might be part of the mood issues too. I typically do epsom salt baths every other day or at least 3x’s a week. I’ve been taking turmeric and have the burbur/pinella drops. Try to do lemon and ginger in my water sometimes. I’d like to use charcoal but there is not enough space between this regime I’m on btw meds and meals.
I see my doctor this Friday so I’ll be able to get her take on everything. Is there any other detox treatments you would suggest? I’m open to anything.

It is frustrating. It’s crazy how much time and money and emotion it takes to try to get functional. But I am glad to have an outlet here for support that makes it a little easier
Posted 11/16/2021 2:18 PM (GMT 0)
Hi Sarahjane,

I just wanted you to know that it does get better. I was in a similar situation as you and I'm going on 16 years of being healed.

Taking detox baths are great! Even though I'm well I still take them just to remove the toxins from living everyday. I dry skin brush my body first to removed the dead cells so the epsom salts and hydrogen peroxide can enter. I used to do foot baths as well but I stopped those (warm water mixed with dry mustard powder and cayenne pepper). You can google the purpose of foot baths.

I didn't take antibiotics because they made me sicker and I couldn't handle feeling more sick then I already was. So I tried all different types of alternative medicine until I found the protocol that worked for me which happened to be Jernigan's protocol. I didn't expect to feel any different from that protocol either but I did to my surprise.

You asked about more detoxing, I suggest if you could take a detox bath 5 times a week that would be more beneficial. I stay in the bath for about 20 minutes and drink water. Years ago I bought a portable sauna and that helped me a lot. If you are able to exercise that's another form of detoxing. Sweat it out! To this day I do aerobic walking to Leslie Sansone dvds. She has a 1 mile walk where you walk in front of your TV (you may be able to find it on YouTube).

May I ask if you are nearing menopause? When I was peri-menopausal I got scared that I had relapsed but I didn't. Hormones can play so many games with a person.

Last but not least when I took Jernigan's Neuro-Antitox formula it cleared out the ammonia in my brain so I felt less depressed and so much better! When lyme bacteria die off they leave a neurotoxin (ammonia) which messes with the brain and body.

Hang in there okay? You will get better!
Denise
Posted 11/16/2021 7:42 PM (GMT 0)
Deejavu gave some really great detoxing ideas! If you need more, please keep asking!!

I also wanted to comment on your startle reflex. Mine was WAY over the top. Crazy reactions to being startled. And yep, everyone but me thought it was funny. I didn't because it actually caused me Neuro pain.

For me, it was due to toxins and infections attacking my nervous system, so detoxing really well and staying that way (yep, what a pain!) and treatments slowly too that away as well.

Hang in there!!!
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