Lyme is back in full force

Hello everyone,

Many of you already know/remember me. I'm a veteran on this forum but have been on here less and less as I successfully recover/recovered and trying to move on with life more and more.

However, I'm in trouble guys.

Last month I took the WB again and retook the test for mycoplasma. The WB showed active bands and myco score is back up to original high levels.

Coincidentally, or not so much, weeks after this I've experienced old lyme symptoms that I haven't experienced since the early days. Joint pain (toes). Tender, sore soles that feel funny when you walk, etc.

Then an old and very troubling symptom of noticeable collagen loss returned.

When I first experienced wasting and collagen loss it was in my legs, knees, and ankles. This was 8-9 months ago. As troubling as this was it didn't bother me too much at the end of the day because I could just wear pants and only I knew what was happening.

I then took matters into my own hands and started to do physical therapy. I built all the muscle back and then some on my thighs, making measurable progress on my calfs. My knees look much better where it appears collagen has returned. My knees are no longer really nobby when I bend them.

It seems things were on the up and up.

But now I'm experiencing noticeable collagen loss in my wrist and elbows. It's almost like lyme waived the white flag on my lower extremities, packed their bags and moved north.

The loss is noticeable and happening relatively rapidly.

This has me very distraught. And not since getting lyme in the early days, I will even say I'm scared. As much as a lyme veteran that I am, and the battles that I've had with lyme (winning many of them), this new predicament has me a bit scared.

I saw my LLMD today and she gave me her best collagen support supplement and protein meal packs.

This ordeal has me so worried that the big herb advocate that I am, my LLMD suggested getting back on ABX and I agreed.

I'm really worried (logical or not) and everyone on this board helped get me through the fear and anxiety of my first tour with lyme, so I'm back for tour #2.

I really don't "mind" most lyme symptoms as I can power through, but collagen loss I absolutely hate because if feels like I'm dying (even though I feel alright), if that make sense.

I know no one on this board can really directly help me. But I really need the moral support. I'm trying to be emotionally strong but this "wack a mole" game with lyme really has me feeling hopeless.

Oh my gosh, how sad.... and antibiotics.... even more sad.

Did you have a stressful situation come up? What triggered this relapse?

Why not got back to Buhners? Did you not do a maintenance dose when you healed?

Sorry I have so many questions. This is my greatest fear -- lyme again. I have been healed for a year and I know and can feel lyme still in me, but I stop, duck and cover -- really I treat with any impending threat. Usually J/K is my go-to at the first sign and then on up the list. I have had to do this 2 times in one year.

Hugs of healing and prayers too... so very sorry.

My personal opinion is this stress is the cause.

I'm so sorry. Your post is certainly nothing we want to hear about, for you to experience and for us, a not so gentle reminder that we are all victim to the reoccurance of the horors of this disease. No matter what we do, it's lurking, and waiting...

Thanks for sharing, here's to a speedy recovery and a reminder NEVER to let our guard down and to take the best possible care of ourselves.

I'm sorry to hear that you may be relapsing. This is unsettling to hear for many of us.

I'm curious when you say you had collagen loss. I have had strange wrinkling appearance in my bilateral calf region for over a year now. It started mostly in my left calf where most of my nerve issues are, but it has since reared it's ugly head in my right calf over the last 6 months. I am also noticing this strange wrinkling now on top of my feet, my forearms, and on top of my hands.

Would you say this is what you are experiencing with collagen loss? Of all the doctors I have seen only one had a guess as to what this was. She said it was a sign of Small Fiber Neuropathy. It was a neurologist who then sent me on my way telling me to take more gabapentin.

oddity said...
I'm sorry to hear that you may be relapsing. This is unsettling to hear for many of us.

I'm curious when you say you had collagen loss. I have had strange wrinkling appearance in my bilateral calf region for over a year now. It started mostly in my left calf where most of my nerve issues are, but it has since reared it's ugly head in my right calf over the last 6 months. I am also noticing this strange wrinkling now on top of my feet, my forearms, and on top of my hands.

Would you say this is what you are experiencing with collagen loss? Of all the doctors I have seen only one had a guess as to what this was. She said it was a sign of Small Fiber Neuropathy. It was a neurologist who then sent me on my way telling me to take more gabapentin.

For me its the soft padding around the joints. The soft padding on the wrist has greatly reduced and my elbows are extra nobby, similiar to how my knees looked almost a year ago when it was happening in that region. And more on my left side than my right (typical lyme to pick a side).

It's not so much the skin.

It sucks because the joints have no muscles. It just bone, collagen, and skin. So no amount of working out can fix this.

That's the helpless feeling I'm having. I have to just take my collagen/protein supps and treat lyme and wait and cross my fingers.

I hate doing that. At least with muscle wasting, everyday there's something I can do about it (physical therapy). It takes hard work and commitment but it's doable (and works). With collagen loss around the joints I have to just treat and supplement and wait.

I just hope it doesn't get worse.

Post Edited (dacarte3) : 7/12/2017 12:59:02 PM (GMT-6)

dacarte3 said...

oddity said...
I'm sorry to hear that you may be relapsing. This is unsettling to hear for many of us.

I'm curious when you say you had collagen loss. I have had strange wrinkling appearance in my bilateral calf region for over a year now. It started mostly in my left calf where most of my nerve issues are, but it has since reared it's ugly head in my right calf over the last 6 months. I am also noticing this strange wrinkling now on top of my feet, my forearms, and on top of my hands.

Would you say this is what you are experiencing with collagen loss? Of all the doctors I have seen only one had a guess as to what this was. She said it was a sign of Small Fiber Neuropathy. It was a neurologist who then sent me on my way telling me to take more gabapentin.

For me its the soft padding around the joints. The soft padding on the wrist has greatly reduced and my elbows are extra nobby, similiar to how my knees looked almost a year ago when it was happening in that region. And more on my left side than my right (typical lyme to pick a side).

It's not so much the skin.

It sucks because the joints have no muscles. It just bone, collagen, and skin. So no amount of working out can fix this.

That's the helpless feeling I'm having. I have to just take my collagen/protein supps and treat lyme and wait and cross my fingers.

I hate doing that. At least with muscle wasting, everyday there's something I can do about it (physical therapy). It takes hard work and commitment but it's doable (and works). With collagen loss around the joints I have to just treat and supplement and wait.

I just hope it doesn't get worse.

This whole thing is very odd to me. I've said it before, it's like some angry alien has taken over our bodies. I'm amazed at the different symptoms I deal with on a daily basis. Just thank God you do not have Small Fiber Neuropathy.

Try not to let this get you down, it's not unusual for it to come back one, two, or maybe even three times, Hit it hard again with treatment and eventually you will finally get to a point that it won't come back again. You're on the road to recovery, it's just happens to be a long road.

Post Edited (Kirky98) : 7/13/2017 12:07:12 PM (GMT-6)

Thank you everyone for your kind words and support. My herbs get here Monday and then I'm on ABX Friday.

Wish me luck.

Yes, good luck and fast healing.

Patty

bluelyme said...
I had much of the same symptoms and though strength is back the parts with wasting are slow to return . I have not let up .i dont trust lyme .western blot is not a good measure except that your immune sx is working ...i feel the wasting is a a combination of a bartonella induced vascutis and subsequent nerve damage .
i would get on houttynia and allicin ,and maybe andrographis asap from zhang and consider bvt and or rife if rifampin and zith are not options .
this is the first time i feel out of the grip of deaths door .live in between but it is a full time job ...take weekends but otherwise its 50 hr weeks and do not stop ... do not give them room no quarter no rest for them . Maybe in a few years but hey peoples diagnosis and life choice sentences are often for life ...we are lucky you know the name and how to fight it ...

Blue lyme,

I missed this post.

Yes the LLND wanted to do the WB just to see if the immune system is fighting lyme more so then to try and "prove" I have lyme. That has already been proven.

I was already ahead of you and got andrographis ASAP lol.

To be honest, I always thought the "stress" thing was a little overrated, no offense to anyone. But the month of June was REALLY stress. A lot of disturbing things (in life not lyme, was happening). Insomnia came back hard.

But I will not underestimate the stress factor again. Next time if a really stressful event happens I'll actually take prevented actions.