Remaining BODY PAIN - any detailed links on reasons and how to resolve?

As I read my headline, I'm thinking "good luck with that".

If there was a good way to resolve it, It wouldn't be a mystery, right?

Cant hurt to ask though. I'm just wondering if any great Lyme Drs have written about this in detail. By detail, I mean how ATP/muscle chemistry is affected in the long term in late treated lyme. Its all guess work untill a body chemist / MD looks into it at the cellular level. I've searched, and found nothing in detail, other that guess work.

Its easy to throw more ABX into ones body (and assume one still has chronic lyme), but not everyone handles abx well, my liver does not like abx at all, I wont do it anymore. Have used four different ones per a good LLMD. I felt better at one point on Doxy, but doxy is also known to be an anti-inflammatory too. Did I herx like crazy, or was the major discomfort really my liver telling me it was slowly dieing from the abx? I dont know. Any abx feels toxic to me (and makes my liver enzymes skyrocket), no matter how much detox I try.

I can still remember 25 years ago, some months after the bite, laying in bed and my body would go into mini spasms, and tighten up. The ridged muscles gave me slight scoliosis too. If I didnt keep on moving and progress into individual muscle release, I'd probably be very "MS like" today, as that was the direction it was headed. So even though I also have a lot of gene mutations, the majority of stiffness happened after my Lyme rash 25 years ago. And it progressed fast, then leveled off, leaving me in pain.

I have some good non- conventional MDs trying to help figure this out, from a lyme view point and any other possibilities , genes and other possible diseases, or what long term effects lyme does to you.

I am getting very tired of living like this. Work (I have to) is getting harder this way as I age. Pain everyday, to a different degree. I cant type (slow painfull hands) for an office job, I cant do physical work 8 hours (feet, hips, back), and I cant stand very long without muscle tension. There is no job I can do 8 hours without pain. As far as I know, no one will pay to sit in a recliner! So I'm screwed and forced to be in pain during the work week. (A life in pain is not much to look forward to)I absolute hate monday thru friday now. Venting again, oops....

I know I'm not the only one like this, I am surprised at the lack of info available on "pain after lyme".

A trial of LDN (low dose whatever its called) will be in my future if I cant resolve this the right way. And I hope that helps.

thanks

Astro - is there something that's holding you back from trying the LDN?
Just wondering why you aren't trying it already.

If it doesn't work - no harm done.

I wish it had worked for me.

Also - if you still have active infection - don't you think that when the infection is in remission, that the symptoms - including pain will resolve?

I have not tried LDN (yet) because even though it sounds great, its still a symptom cover up from what I've read, although a good one. And then I need to adjust my thyroid level again.

Since the body is one very complicated chemistry lab, I'm convinced there is something lyme does that offsets this, even after lyme is gone. 5-10 years is one thing, 25 is another. Bazillions (more or less)of microscopic holes in your body remain after the infection is gone, I would think that creates symptoms of some sort. I did ABX over 15 to 16 months. The one month of improvement was so short that I cant say it was from ABX benefits.

Two Drs that followed Iliads have told me that not everyone gets 100$% better, they were just being straight forward with me. Polio, as an example, had lingering effects in people, long after it was gone.

I did ask one place about trigger point injections, but they said it doesn't work well for wide spread pain (too much required), or deep trigger points. Prolotherapy looks great for specific tendons, costly though. My tendons lack the elasticity they are supposed to have.

IMO, Borrelia burgdorferi is just part of your problem. If your tendons aren't like they should be, study the composition of tendons and postulate what you are missing. Increase your intake of those minerals. It took Terry Wahls eight months to make a difference in her condition. It has taken me over a year.

Pain is usually caused by inflammation. Inflammation is caused when the immune system detects an agent it deems foreign. That agent can be a pathogen or a protein. The cytokine storm that occurs triggers a chain of events that the brain's receptors determine is pain. There are many steps in that process and any one step that isn't functioning properly can cause issues in the entire system. I have researched the most common issues that occur from chronic infection and expressed by beliefs on this forum. Perhaps you have a histamine or mast cell issue? Perhaps your bradykinin (B1) receptors have been damaged? Perhaps your flora is still so skewed that proper metabolic functioning can not occur? (ex. 5-HT production is over twice as important in pain transmission than histamine)

If I were in your shoes, I'd be looking for what by-products I was excreting to try to determine what was going on. Doctor's Data has tests that are good for that.

Hi again Astroman,

I think this is a pretty good article on detailed reasons and how to resolve your remaining body pain (excuse me if you have read this article before):

Lyme Toxins the Primary Cause of your Symptoms

www.benbrew.com/lb/lyme5.pdf

Denise

GH- Terry Wahls- wow, I read a little on her, I'll have to read more.

Deeja- thanks for the PDF

Traveler said...
I would say inflammation as well - only I would suggest an anti-inflammatory. The inflammation that Lyme creates is in between the cells and won't necessarily be picked up by conventional testing. I had doctors arguing with me that I had no inflammation, yet the knuckles on my hands were so swollen that I had to stop wearing my wedding ring - among other indicators - so I know that I had plenty of inflammation.

I choose to use natural products and have found turmeric to be very, very valuable in my daily routines still- even though I'm healed from the infection itself.

As you said, no one knows what having a long standing chronic Lyme infection will do to the body. I'm finding out the hard way and there is virtually nothing that helps guide me.

If you look at the proteins that are transported through the cell membranes during the initiation of the cytokine cascade and what is required to transport those proteins, you can get an idea of what may happen if that process is repeated constantly over time. Combine that with the research about the decrease of intracellular polyamine levels that come with age and you find that polyamines are not reentering the cells. Look at the research that shows pathogens utilizing metallothioneins to sequester metals of various valences and you get a further evidence of what is going on. There is no paper that shows what will happen to a long term Lyme patient, but you can connect the dots with numerous papers and you can get an idea of what is happening. If you act on this theory and practice to prevent it from occurring, you may see benefits that were not previously available. I know it has worked for me. My recommendations may seem unorthodox to some, but I arrived at them through years of research and practice. Practice on myself.

astroman said...
I have not tried LDN (yet) because even though it sounds great, its still a symptom cover up from what I've read, although a good one. And then I need to adjust my thyroid level again.

Would you mind sharing what you've read that brought you to the conclusion you did about LDN?

LDN modulates the immune system and the result can be improvement in symptoms. I wouldn't say LDN is a symptom cover-up but, instead, a mechanism that promotes balance and healing.

Do you not have to adjust your thyroid meds at least seasonally? Many people find the need for more hormone in the colder weather.

Based upon the actions of LDN, yes, there could be thyroid dose adjustments as your body "re-sets". However, those same actions show promise for stable thyroid levels.

Deejavu said...
GH,

Is there any possible way you can reword what you wrote so that a dumb blonde like me can understand it?? Duhhhhhhhhh!!!! I only understand simple things because basically I am a very simple person... You know: 2 + 2 = 4

Denise

Denise, I apologize but am not very good at teaching or even relating sometimes. I'll do my best. As we age, pathogens cause us to wear out. We lose nutrients that aren't being replaced by our diets. Add in Lyme or another infection and this process accelerates rapidly. We can take all of the herbs and antibiotics in the world but if we don't have a trace element/nutrient we need, we won't get better. I literally have a basket of supplements at my house that would fill up a trash can. I've tried so many things and gotten good and bad results. Getting simple and replacing the trace minerals and missing elements is what has helped me the most. This won't help some until they lower their pathogen load down enough to benefit. Our detoxing ability is the the limiting factor in our treatment.

In truth, a severe Herxheimer reaction is a sign of poor elimination pathway drainage, poor organ support, and poor treatment by your doctor.

-Yep!!!!!!!!!!!!!!

And if you have your share of liver detox pathway mutations (dysfunctions), then you "herx" even worse on ABX, it can be dangerous. This was discovered in me (23andme testing) after 5 month long herxing - my body was getting more and more toxic despite trying to detox, I even started to lose motor control of my limbs. This was not the "bad for tendons ABX" either. Better now. You only have one liver.

I've thought about it for a couple of smaller places wear the pain area is easier to pinpoint. Its kind of expensive, like $250 to $300 out of pocket per injection, I heard.

For widespread pain or widespread aches that are hard to pinpoint, this might not work.

It might work good for my bad foot, but not my whole leg its attached to.

i feel great these days but still have the occasional tight muscles and lingering neuropathy. For me and I think for many of those with Lyme, magnesium plays a major role in tight muscles, leading to facial pain, tight neck and shoulders and overall body aches. The more I take, and I just got an injection at my dr, the better I feel. Also, I just recently stopped taking an ex vitamin B combo and boy oh boy have I noticed a major difference in my body. Vitamin B deficiency can lead to major upset in the nervous system leading again to tight muscles and body pain.

Lyme throws off so many systems and I think we overlook the benefits and necessity of crucial vitamins and minerals that without Lyme, may not be so low.

Girlie- Your friends $100 per prolotherapy treatment (not per injection) is great deal.

So she just had it.............do you know if it was a painfull after getting all those injections (I'm wondering if I would be able to drive after?)

I wonder how they figure out where to stick you with the needles?