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Posted 2/20/2017 2:50 PM (GMT -5)
Well as much as I hate to say it I'm back in the game. I had gone misdiagnosed for around 10 years to the point my doctors had told me to get my affairs in order and that they would help with the pain as much as possible. Thankfully I went to 1 more doctor who ended up being LLMD and after some intense medicine I was able to go into remission. We all know how it is though. You still have little things left over from the lyme- allergies, sensitivity to temperature, memory issues, ect. But overall I had 3 good years in remission. Now I find myself with the hard reality of telling my husband that we will have to put a hold on starting a family and I have to go back to fighting the lyme. At first it was just the memory fog and numbness in my hands, feet, and face that alerted me it was back. Last night the pain started up. I just needed a reminder I wasn't alone out here. I have a great support team but it's not the same as someone who has gone through this. So here I am back in the game. Anyone else relapse after so long in remission? Was it easier to beat this go around?
Posted 2/20/2017 2:54 PM (GMT -5)
Hi... so sorry you're back in this awful game, but this place has great support. I did go into remission, and I had the best 12 months I've had in 20 years. I am still fighting it the second time around but finding progress for sure.

Keep after it!!
Posted 2/20/2017 2:56 PM (GMT -5)
Thanks! Hopefully we both will reach remission again soon!
Posted 2/20/2017 2:59 PM (GMT -5)
Welcome! I'm sorry you came out of remission. I wish you a speedy road to health.
Posted 2/20/2017 3:10 PM (GMT -5)
Am I right in guessing you've been here in the group before?

If not, have you read our intro "New to Lyme?...start here" Obviously you aren't new to Lyme, but it's a great 2 pages of info.


I've had a couple of partial remissions that came about without intentionally treating for Lyme, probably due to recovering immune function and easing of life stress. Always, yes, there were still always residual issues but I was working and playing in spite of that.

Traveler will tell you her story of re-infection later


The good thing about this is we know we did it once, at least, so there is that hope we can do it again!
Posted 2/20/2017 3:17 PM (GMT -5)
Hi BookWyrm - welcome to the community!

Is it possible you stopped treatment a bit too soon?

You said you still had "allergies, sensitivity to temperature, memory issues:

i'm just wondering (hope I'm not offending) if those were active infection symptoms...and you needed to continue to treat.

i know people in remission...and there are no symptoms at all.
I do realize that there could be some damage done that may or may not heal (arthritic joint damage, nerve damage...etc)...
Posted 2/20/2017 3:54 PM (GMT -5)
Welcome! I'm sorry that you're out of remission. I'm hoping to get there myself. Have you changed anything you were doing while in remission? Diet, supplements, anything?

Hang in there. You're in the right place. smile
Posted 2/20/2017 6:33 PM (GMT -5)
Julymorning- I'm actually new to the group. I did read over the "new to lyme" thread though. You are right- knowing we beat it once brings hope to our current battle.

Girlie- thanks for the welcome. I was treated for a couple of years, but I think my continue issues stem from underlying matters that the lyme brought to light (heart defect thankfully taken care of now, and Reynards) and the memory issues are much better than they were(literally forgot who I was and where I was) I'm doing the yeast test now to see if the re-emergence of the brain fog is from that.

Stoopid- my only changes are that I got off birth control and stopped my lyme diet. I'm praying we all get to remission soon. I'm really glad I found this website and all of yall. I fought this alone the first time and it's nice having support this time.
Posted 2/21/2017 11:04 AM (GMT -5)
Hi Bookwyrm!
Welcome to our community! I'm very glad you found us this time around too!

I was reinfected, but I'm back at it as well.

I'm so glad to hear that you have a good support team at home! There are many that lack that. I did for much of my illness. But, now I can come here and talk to others that really do understand and sympathize and can help much of the time!
Posted 2/21/2017 11:14 AM (GMT -5)
Thanks Traveler! Question- how fast did you notice the symptoms returning with your relapse? My big indicator it was back was the tingly numbness in my feet, hands, face but this week has brought back the joint pain. Also does anyone have suggestions for quick on the go type breakfast that sticks to our lyme diet? Sugar free yeast and gluten free- bonus points for no dairy and or eggs;)
Posted 2/21/2017 12:01 PM (GMT -5)
Honestly, I noticed symptoms coming back within 20 minutes of the tick attaching - but then I went into denial. You would think that someone that has had it for 40 years previously wouldn't do that, but..... LOL.

It was 2 months later that I finally got back into treatment by the time I came to my senses, and got my herbs tracked down and ordered. I had my adrenals crash, taking my thyroid down with it, so I have extra issues now to deal with and have been back in the fight for several years now - much of that time has been spent struggling with trying to figure out my adrenal and thyroid issues and getting them properly supported. There are no doctors in my area that are willing to help me, so I'm completely on my own with all of this, even the thyroid and adrenal issues.

For breakfast, I don't follow the usual "Lyme diets", but I do have a few breakfasts up my sleeve that do. ;) I HATE cooking, so sorry:
A green apple (Annie Smith - lower sugar), and nut butter of some sort.

Steel cut/organic oats, with pecans and cinnamon and a bit of stevia.

I'm sure that others will be along soon with better suggestions though! Also, you may want to start a new thread for that question. A good title will bring more views and more suggestions most likely.
Posted 2/21/2017 12:02 PM (GMT -5)
BookWyrm, first all -- Welcome but so sorry you are ill again.

This scares me about relapsing. I think relapsing and reinfected are 2 different things. I believe Traveler was bit by another tick and infected. I could be wrong. Relapsing is common, I have heard. Darryl Hall says he relapses about once a year.

I was symptom free for 3 months and then I stopped my treatment. I have almost been 1 year in remission. So stories of relapsing scare me.

about breakfast. I ate weird things for breakfast. I had no problem having organic chicken soup for breakfast. I ate beans and rice once. But, I did eggs while I was in treatment. I also did sourdough toast, maybe twice a month. I was cautious but I did not have a lot of GI issues that many lyme patients have.

Eat something healthy and it does not have to be "breakfast." I love a bison patty with steam broccoli for breakfast.

My still favorite is a baked potato with Kerrygold butter and 3 cloves of chopped garlic sprinkled on top. You can smell me coming, but I swear it was what really helped me kill a lot of bacteria.
Posted 2/21/2017 12:12 PM (GMT -5)
The thing is, if a person is relapsing yearly, then they never healed in the first place.

I was 'grilled' (in a loving way though!) by members on here when I got reinfected. They really just wanted to know how I could tell that it was a reinfection and not a relapse - but there was just no denying that it all started back 20 minutes after the tick attached. I remember, because I was shocked by the 'proof' I had just experienced.
Posted 3/2/2017 11:55 AM (GMT -5)
Hey everyone! sorry I took so long to reply. Work has been crazy and has used up all my spoons shakehead I just found out I have that MTHR gene thingy where I don't process folic acid. I'm beginning to wonder if this is not a relapse and maybe my symptoms are due to that....then again it could be wishful thinking. I'm having a hard time getting ahold of my doctor so I can discuss my test results. We all know how frustrating this can be. I hate the waiting game. PeteZa- I think relapsing is the nightmare that haunts all of us and makes us a little paranoid. The symptom that I'm thinking may just be due to high levels of homocystine (from the MTHR) is peripheral neuropathy. My 1st bout with lyme gave me some days where I was numb on parts of my face, from my hips down to my feet (great for high heels because I couldn't feel the pain) and my upper arms down to my hands. On my bad days my roommates in college had the joy of treating me like a life size Barbie- dressing me and doing my hair/ make-up. Thankfully they were theatre kids like me so I usually went to class looking like my usual "stepford-wife" self and not like a 5-yr-old playing dress-up. LOL tongue Well fingers crossed I hear something soon one way or the other.
Posted 3/2/2017 12:14 PM (GMT -5)
Well, I hope life slows down for you a bit so you can save up some more spoons!! I hate when I know I'm running low!! I just wait for the 'next shoe to drop' and what's going to eat up my reserve.

I'm glad you found out that you have the MTHFR genes - now you can take some supplements to help your body make those connections so you can detox easier.

Do be sure to let us know what your doctor has to say!
Posted 3/2/2017 5:53 PM (GMT -5)
Maybe I missed it, but did you treat with abx, herbs, or a mix before?
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