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Struggling to keep hope alive

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Posted 10/16/2017 12:29 AM (GMT 0)
This is my first post on this site. I’ve been battling Lyme for many years now and I’m only 26 years old. Have been treating for about 2 years but still struggling with so many symptoms and just feeling so overwhelmed and so lonely. I feel like my life has just been at a stand still for so long and I wonder if there is a light at the end of this tunnel.

I’m so tired of working so hard to manage my diet, detox and just survive on a day to day basis while trying to hold onto my job. I’ve made some progress but it feels like as soon as I do a new symptom pops up or new issue and I can’t keep up with it. Is anyone out there getting better if they were not treated soon after symptoms started?

I know there are so many out there that are worse off than myself but I am struggling to accept my limitations and wonder what my future holds. Thanks to anyone who reads this. Praying for everyone out there struggling along with me tonight
Posted 10/16/2017 1:32 AM (GMT 0)
Hi Sarahjane - welcome!

I'm so sorry you are still suffering with so many symptoms after 2 years of treatment.
I know what you mean about life being at a stand still...

Yes, people are getting better. It just takes a lot of time...unfortunately.

I'm at 3 years now. I have whittled my symptoms down to less than 10 bothersome ones...(from close to 40)
But, a couple are still my worst ones...so I still feel crappy a lot of the time.

Hang in there...and lean on us when you need to.

Sometimes a switch in LLMD's makes a difference...a new set of eyes. Are you happy with your LLMD?
Posted 10/16/2017 1:34 AM (GMT 0)
Hi Sarah,

So sorry your sick but so glad you found us. This is a very difficult thing to muddle through. We are all so different. We have all experienced the loneliness you mentioned.

I've been treating for over 2 years, I do have an occasional good day. Today was horrible. But in June July I had 6 good weeks.

Hang in there and come to us when you need advise or just a hug
Posted 10/16/2017 2:11 AM (GMT 0)
Hi and welcome to our forum,
I'm sorry that you are going through all of this,not fun at all but try to keep moving forward and think of getting better not staying ill.

I have heard that if we train ourselves to thinking we will gt better it does help overall.

When I was you age I also face a chronic illness, it wasn't easy and even though I had many bad days...I had so many more good days and experiences in life overall.

Please don't give up and don't let these infections keep you down. Keep treating and taking good care of yourself and I sure hope you have more improvements soon.


I wondered, in addition to detoxing have you used binders to get rid of the toxins in your body?
That might help move things forward too.

We encourage all new members to read our"New to Lyme start here" thread at the top of the page. It has tons of useful and important information about Lyme, treatment, testing , symptoms and much more.

Take care, Jo
Posted 10/16/2017 3:01 AM (GMT 0)
SarahJane,

Hello, and welcome to the forum. I'm so sorry you're feeling down and discouraged. I think we all struggle with those feelings.

You asked, "Is anyone out there getting better if they were not treated soon after symptoms started?" The answer is yes. I've had these infections since early childhood and didn't know. Then the chronic bizarre symptoms started in 2009. I got better but symptoms came and went randomly and new symptoms developed as the years went by. In 2015, I had a respiratory illness that sparked a new wave of chronic symptoms that were much worse than what I'd had before. In Sep 2016, I learned I had CIRS from mold exposure and then tested positive for Lyme and ehrlichia early this year. I started treating with Stephen Buhner's protocol in June.

I can tell you I'm much better off than I was a year ago. I can also tell you that my progress has not been linear. Sometimes I still wonder if I'm really getting better or if I'm just rotating symptoms.

A year ago, I was dealing with toxicity from mold on top of Lyme and coinfections that had gone undiagnosed for a long time. Mold toxicity is horrible enough in its own right. Symptom-wise, I felt like I was in a cyclone with symptoms whirling all around in mass confusion.

It was only a few weeks ago that I started to feel like my symptoms were slowing down and starting to dissipate. I finally thought I could tell what was triggering different symptoms and thought I had a grip on things. For the past week, though, I've been having worse symptoms again and feeling lost and confused again trying to figure out what's going wrong. I have to remind myself this will pass just like the other flares passed. I believe the flares or herxes, whatever they are, will get fewer and farther between.

Please don't give up hope. You may have to change something to get there, but don't give up. Dealing with Lyme and all that goes with it is frought with confusion and ups and downs. Everyone truly is different in how they are affected and in how they recover. I'm just trying to trust God and learn as much as I can so I can make informed decisions.

Pray you will feel the hope and encouragement you need tonight and will have some peace that everything is going to work itself out in due time, even if the waiting is hard. Sometimes it takes a long period of steady, consistent pushing before the wall starts to crumble and you know you've broken through.
Posted 10/16/2017 3:16 AM (GMT 0)
Very sorry to hear about your struggle sarahjane. Lyme is a constant pain in the a**. My symptoms came on very slowly (I want to say I was developing issues for well over a year) But I didn't seek help until about four months before receiving a diagnosis because that's when my symptoms got serious. I have been doing antibiotics since January of 2017. Recently i have started to feel improvements but this past summer was a living hell. I know what pain and suffering you must be feeling but this is a great place to talk to people about it. I wish I would have found this month's ago. You are not alone. Not that this is fun at any age but I'm 28 so i feel for you on not being able to enjoy these years of your life....its simply not fair. Don't give up. Two years is a long time to fight this thing but if you had it for many years then it's going to be more of a battle to kill your lyme. I feel for you and I'll say a prayer.
Posted 10/16/2017 3:31 AM (GMT 0)
Sarahjane never give up! You will get glimpses of "back to normal" and then all of a sudden you will see that you are not feeling bad at all. Just don't give up and keep on trying.
Posted 10/16/2017 11:45 PM (GMT 0)
Thank you all so much for the kind messsages and encouragement. I’ve been feeling a little better this afternoon thankfully but the ups and downs can be so discouraging. It helps to know that there are so many others out there going through similar situations and so glad to hear that some of you are improving with treatment.
Girlie I do like my doctor right now but it’s so hard to know if I’m doing the right thing. I saw one doctor who was treating me with cowden protocol for over a year but bc of lack of progress (I had to move bc my apt had mold) I changed to the one I’m seeing now and have been on antibiotics for about 9 months or so and was having some great improvements and feeling a lot better on a combo of riphampin and minocycline. Then she wanted me to try the weiegman pulsed protocol and wow was that an ordeal. Physically I actually did not feel terrible but I had this out of control anxiety and was going crazy on it. She felt that it was the bartonella coming out. So we went back on the mino and riphampin and I herxed really bad for a couple weeks. I have started to stabilize on it and am feeling better but still having some really bad days and can’t seem to get back to how I was feeling before. It just seems like such a crazy never ending cycle to get rid of this crap. And I am on a really strict diet to help keep symptoms under control and detox as much as I can but it’s just so overwhelming.
Goshawk I do take cholystyramine several times a day and at times I take charcoal to detox.
Thank you all so much for the prayers it did seem to make a difference and I feel more hopeful today. Praying for you all as well
Posted 10/17/2017 12:17 AM (GMT 0)
Hi, I had a similar bad herx treating Bart in July. Two weeks of pretty severe increase in neuro symptoms and like you I was not better right away. It was depressing and I felt like I backslide so much.

My llmd had me increase L-Tryptophan, Uncaria ryhynchophylla and she added a few supplements by apex energentics called Gabatone and Dopatone. She also had me step up my use of zeolite.

It helped quite a bit and started me back on the path of improvement.

This all did take about a month to feel like I was on the right track again but at the time I though it would take forever.

Maybe your llmd can check these out to see if they would be an option for you or not.

Good to hear you are using binders, that is very important.

Well take care and I truly hope this turns around for you soon and you have brighter days ahead, Jo



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Post Edited (goshawk) : 10/16/2017 6:25:37 PM (GMT-6)

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