neuro lyme stories of healing

Please need some hope today

So sorry to hear you are struggling but glad you reached out. You aren't alone and hopefully
some better days ahead very soon.

We can heal, just sometimes we get worse before we get better and that is really difficult.
It is real trial and error too sometimes as there isn't one size fits all - there is a vast array
of different persister symptoms with us and we have to switch protocols often to find the right
one, the one that suits our body's needs at that time.

Sending lots of love and strength.

shallow breathing, forgetting to breathe, weight on stomach and of course the every present hot body....

does this ever get better...I am scared to go to sleep at night..I have a c pap machine but I cannot wear it due to my mouth being raw it drys it out and since all of this stuff has happened I sleep with my mouth open which I never did before....and I just can't wear it...not to mention with the dermagraphics....I would get up with imbedded in my face which isn't really an issue would just look funny

I HATE THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I have not had one good day in 2 years...this has been hell..I do have a job and come here and sit at my desk but it won't last long cuz I can't hardly work..and process information...Im happy I can still drive..but my eyesight is getting worse...

my nails don't grew..my hair has almost all fell out...and the list goes on

Whats even weirder is I can't eat hardly anything because my mouth feels raw..so my nutrition is not very good....which I need nutrition now....

Post Edited (carla) : 6/16/2016 10:43:13 AM (GMT-6)

Hi Carla
My son and I were diagnosed with and have been treated for lyme for the last 9 months and 4 months, respectively. We have had it, likely, since about 1994 / 95...so it was slowly doing it's thing for quite some time. For my son, in particular, the neurolyme had devastated his life for the past 8 years or so...making him pretty non-functional and bed ridden almost 24/7 by last September / October when treatment kicked off. We were told things would get worse before better ...but that we should see some improvement by a year out.

The fall and holiday period 2015 was a horror as he worked through the worst edge of babesia ...but he began to be able to speak again by early December.

January to March 2016 continued to be daily struggles but by the end of March he was out of bed every day for 14-16 hours (although often laying on a sofa in a main living area). At an appointment with his LLMD in March we were asked if we were seeing a pattern of any good periods yet in his 2 weeks on, 2 weeks off antibiotics protocol....I couldn't claim that we could.

And, then -- gosh -- the pattern breaks through! ...just in the last 2 months - where the same days in the 28 day cycle are consistently pretty good (meaning bearable), with a few extra days of better days in the 2nd of these months. I'm told that month after month, these periods may / should get longer.

Now the bad days are nothing as bad as last December but they are bad because he's got more energy but can't quite put things together so that causes this terrible lash out - which can be a challenge for him (and all hearing it or targeted by it). But the glimmers are there. And the beautiful young man emerges sometimes and so kindly says "thank you..." for simple things like a meal or even "all the care." And the glimmers feel like you can almost see solid rays (til the next moment when a rage happens or a new strange OCD behaviour occurs for a few days - grin).

I know we'll get there! I know YOU'LL get there. And the group on this forum is amazing to have as support.

Hi Carla and (((((hugs)))))

I'm healing from neurolyme after a year of LLMD treatment and several months trying to treat myself. I've had only a couple bad days in the last month during the new moon, which is such an improvement over how it had been. My presentation was deep dark depressed mood, very freq. crying spells, brain fog, difficulty with vision and probably more that I've forgotten, oh yes, poor memory, ha.

When you are in the middle of it, yes it's such a long road and then as someone said above, one day you just notice that there is an improvement. You will get there.

But please, remember to detox and have you tried colon hydrotherapy for detoxing? I highly, highly recommend it. It made such a difference for me.

God Bless you, Carla.

Hi,

I'm sorry that you are feeling so bad. I had/have pretty bad neuro lyme and am finally feeling like the end is near. I'm in my 9 month of treatment and am having some "normal" days. During my worst, I had lyme rage (my kids tell me stories of horrible things I said to them that I can't remember ever saying), couldn't remember the neighboring street I was walking on (looked like a new street I'd never been on before), couldn't spell, could recall words and would stutter or say the wrong word, total fail at face recognition, extreme paranoia (accused my brother of stealing money from my parents), extreme anxiety, depression, couldn't feel my hands and feet most days, total body vibrating. And that was just the neuro part...My heart breaks for all of us to have to go through this and not having the general society even recognize the disease makes it even worse.

Back in January, I was invited to join a meditation group and it really helped me with my catastrophic thinking that I wouldn't ever be normal again. It's called Joey Klein's Conscious Transformation series. He happens to also come to my city for seminars and I have been attending and I can't recommend it enough. His book is called The inner Matrix. Please don't loose hope.