This is topic lingering symptoms - advice? in forum Medical Questions at LymeNet Flash.


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Posted by paleogal (Member # 45991) on :
 
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.
 
Posted by Lyme248 (Member # 51011) on :
 
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.
 
Posted by paleogal (Member # 45991) on :
 
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!
 
Posted by Lyme248 (Member # 51011) on :
 
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.
 
Posted by Lymetoo (Member # 743) on :
 
Congrats on all the successes!!

A few things for you to google ..

Oxalates in foods .. joint pain, muscle pain

salicylates in foods and in skin care .. difficulty sleeping, tinnitus .. (and more)

Vitamin B6 .. vivid dreams from taking too much
 
Posted by Brussels (Member # 13480) on :
 
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. fasciculations (whole body, but primarily torso) in the AM on waking

7. swollen lymph nodes in neck

8. tinnitus

-------------------------
First, congratulations!!!

Please tell us what was your MITOCHONDRIA treatment!!! [Big Grin]


Your symptoms above look still lyme to me...

And probably some sort of immune responses like Lymetutu suggested.


It could be also candida (my smaller joint pains
in hands and toes, plus shoulder was more CANDIDA arthritis).

For me, the difference with candida and Borrelia arthritis, is basically that Borrelia arthritis develops MAINLY in bigger joints (knee and hips)

... and it is fast growing (for me).

While candida arthritis develops very slow, but steady, and it is MUCH harder to treat than Borrelia arthritis.


I mean, it is much stubborn and non-reactive (no matter what I did, I only saw minor improvements).

A bit like people here that keep herxing for years but still see no improvements.


Recently, I read this book here, on JOINT PROBLEMS, that was very enlightening.

Very!!

It made me understand why the hell we react with inflammation the way we do. I read half of the book in one evening!!!


Arthritis - The Botanical Solution: Nature's Answer to Rheumatoid Arthritis, Osteoarthritis, Gout and Other Forms of Arthritis


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.
 
Posted by paleogal (Member # 45991) on :
 
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!
 
Posted by Lyme248 (Member # 51011) on :
 
Glad you are feeling better!

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.
 
Posted by paleogal (Member # 45991) on :
 
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...
 
Posted by Sara C (Member # 51102) on :
 
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:

https://www.bestnutrient.com/best-adrenal-fatigue-supplements/

Might consider trying a vitamin / mineral injection from a local doctor also
 


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