posted
Been a while since I've posted because honestly I've been feeling pretty well. My LLMD has me off abx (only on seroquel, cholestyramine, nystatin, and 2.5 mg cortef in the AM), and on major mitochondrial support, which has been life-changing.
I've cleaned up my diet (no gluten, dairy, soy, eggs, and actually pretty grain-free in general).
I am working full-time again, and able to enjoy occasional weekend activities (i.e., I no longer have to rest every minute of every weekend to make it through the week).
This year I have lost 45lbs of the 80lbs I gained while sick.
I applied for and got my dream job (now I just have to pass a physical...luckily it's something like 5 squats and lifting 20lbs, which I can do on most days), and I will be moving back to a drier climate and do work I find really meaningful.
So, that's all good and I don't want to look a gift horse in the mouth.
That said, I have some lingering symptoms, and I would love suggestions for what I should be addressing next.
I have positive tests for Lyme and Babesia d. (IGENEX), and had positive signs for Bartonella including that classic purple rash (disappeared last spring). Given my response to cholestyramine (been on it for almost a year), I also had/have a major mold problem.
Symptoms: 1. major joint aches, particularly hands, elbows, shoulders and often hips and knees
2. buzzing/tingling/vibrating in my feet
3. very vivid dreams
4. fatigue off/on (much better with mitochondrial treatment)
5. fractured sleep (waking early seems to be my current problem)
6. fasiculations (whole body, but primarily torso) in the AM on waking
7. swollen lymph nodes in neck
8. tinnitus
Off and on I still get migraines, but nothing like the 6-month one I had before being diagnosed, so I can't really complain about those too much.
I have other symptoms that crop up here and there, like wordfinding, memory loss, and brain fog, but these ones I've listed seem to be the ones that I note day after day as still being problems.
In fact, joint aches have gotten much worse since ~July.
Any advice anyone has for what might still be going on, or if this is just Lyme et al. doing their thing still and I need to be patient, please let me know. It just feels like I've plateaued somewhat.
Thank you and all my best to everyone.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
| IP: Logged |
posted
It's great you got rid of your Bartonella rash! What did you do? But your symptoms sound like Lyme to me. I had similar symptoms when I thought my Lyme had gone away. Strangely, I didn't even think it could be Lyme still until I came back with a positive test again.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
| IP: Logged |
posted
I am actually not sure what finally knocked out Bartonella.
I did a couple of rounds of rifampin + other meds, I was doing IM Rocephin shots last summer, and last fall did the complete Buhner protocol for Bartonella.
I was on malarone when the rash finally went away (maybe knocking back Babesia was enough to let my immune system take out Bart?).
Sorry I can't remember exactly what helped. Thanks for your thoughts that it might be only Lyme left to tackle. I hope it's not something new that we missed!
Posts: 243 | From Southern Arizona | Registered: Jun 2015
| IP: Logged |
posted
I also did rifampin and now I am trying Buhner's protocol. It seems to be helping.
Someone told me tinnitus was caused by viruses. Have you tested for viruses or tried antiviral herbs like oregano oil or garlic? Tinnitus was one of the few things I never had, but a lot of people with Lyme do have it. I think I had some hearing loss though, from the Bartonella.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
| IP: Logged |
To treat the lyme, in your case, as it is low grade (as you are FUNCTIONING, right), I would have no doubt but treat with nosodes and infrared (biophoton treatment).
That is the only treatment for us that could eradicate all symptoms for good, even the smallest, almost imperceptible lingering symptoms of chronic lyme.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
posted
Brussels -My LLMD has me on Mitochrondrial Renewal by Xymogen. It's very expensive, but it actually made a noticeable difference within a few weeks. I hope to only be on it for a few months more.
Now my energy is actually outpacing my endurance - as in I am so excited to do things and I sign up and then just have to cancel because Im not quite up to it yet. But definitely a step in the right direction.
Thank you for the book recommendation - will check it out.
What did you do for candida? My diet is waaaaayy better than it ever has been for a while, so I'm wondering why I might still have a candida problem.
What are nosodes? And how do I find a biophoton treatment (or is infrared sauna OK?)
Lyme248 - what testing for viruses do you recommend?
Lyemtoo - I don't use any skin care other than olive oil with some rosemary essential oil, so probably not there. Not taking B6...so I'll have to look into oxalates and salycilates. Thank you!
Posts: 243 | From Southern Arizona | Registered: Jun 2015
| IP: Logged |
My energy always outpaces my endurance. It has for a long time, so I have to be very careful not to sign up for too many things. Lately, I've tried not to sign up for anything-I'm always backing out on everything because I'm exhausted.
I'm not a virus expert. My doctor tested me for Epstein-Barr and Q fever (I'm not even sure that's a virus). I don't think those are ones that cause tinnitus-if viruses actually do. I just heard that viruses might be causing it-who knows, maybe it is something else, like a different strain of Lyme. I really shouldn't say anything about tinnitus because I don't know anything about it.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
| IP: Logged |
posted
Just to update anyone who might be curious about these lingering symptoms, turns out I also have:
Mycoplasma pneumoniae EBV CMV HHV-6
(got some additional tests and all came back positive.) It's going to be a longer road than I thought...
Posts: 243 | From Southern Arizona | Registered: Jun 2015
| IP: Logged |
posted
Have you tried any supplements for your symptoms? Your HPA axis might be burnt out, leading to fatigue which can worsen the other symptoms. Lots of supplements can be helpful if it is fatigue related to adrenal burnout after fighting Lyme disease for so long. Helpful list of adrenal supplements:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic