So I figured out what's going on.

I know lyme and co has some very strange or very troublesome symptoms.

But whenever a group of lyme related symptoms that are much more rare comes along I need to research it more (mainly to make sure it's not something else going).

So I know weight, fat, and collagen loss is not uncommon with lyme disease, HOWEVER, it is the way it is happening that made it seem different than the run of the mill lyme wasting. I still knew the root cause was lyme but there was something "extra" about this.

I have significant reduction in fat and collagen in very isolated areas, the joints. But that's it. It's very localized. The rest of my body is fine.

So I came across a group of lyme symptoms that is Acrodermatitis Chronica Atrophicans (ACA). At the end of the day it's still all lyme (similar to how Morgellons is still basically lyme).

Reading multiple sources and studies in a great detail I realized I experienced/experiencing 80-90% of the different "indicators", if you will, of ACA. Like nodes under the skin near joints where the ACA is occurring. Nodes around joints that would look like bruises as they fade and go away. The fact the problem is very isolated at the joint and/or very near the joint. And a plethora of other things that these sources go into detail about.

Now the question is "what to do about". I still have to figure "how" it's happening. I know "why" (because of lyme disease), but how.

What mechanism(s) is occurring or not occurring or not occurring properly, with me and a smaller percentage of lyme patience that is or is not occurring in the larger fraction of lyme patience or those without lyme.

What is going on that makes us different? Once I can figure this out then I can start thinking about how to treat these extra set of lyme related symptoms.

Yes, addressing the root cause (lyme) is always the ultimate goal and that will let the body start to heal. But in the mean time, just like we have herbs and supplements to manage certain symptoms as we battle lyme, I need to do the same in this instance.

I refuse to believe that whatever is happening, or not happening, or not happening properly that is causing this can't be remedied once it's known what that variable(s) is.

I'm posting this because 100 heads are better than one. Anyone's insightful input, knowledge, and information is much appreciated.

Thanks.

PeteZa said...
I am sure you have read much more than I have about this. I have just done a general reading. I had a reddish speckled spot on the top of my foot and that is why I looked this up long ago.

There are so many varied symptoms with lyme and we all don't get them all, thank goodness. We get varied symptoms.

I thought my reddish place was capillary related. I wondered if it was sluggish blood? I thought poor circulation.

I finally just figured I was able to live with it much easier than a lot of the painful symptoms and I did not give it another thought. I had so many pain related symptoms that needed looking into and resolution.

Please let me know what you find out. I am healed over a year now and I can see the reddish hue on the top of my foot. My husband says he can't see it. But he might just be being sweet to me.

If you are not experiencing isolated fat/collagen loss around the joints, then I wouldn't worry about it.

I basically ignored the symptoms that were common Lyme symptoms. Because logic says that's just "basic" lyme, so yes those particular patients are experiencing those symptoms with ACA because they to haveLyme, (common sense). I focused on the more unique symptoms associated with ACA and I am experiencing most of them.

So it's good to know that it's "just" lyme and not something else.

However, there isn't much help out there on managing this symptom outside of just treating lyme.

Decarte that was my finding also. I found nothing specific that I could do for that one symptom. It was just an overall - treat lyme.

it's simple dude, you have B. Afzelii, which is the European flavour of our beloved Borrelia sensu lato.

it used to be called VS461, before it had its own name
/www.ncbi.nlm.nih.gov/pubmed/8027576
/www.ncbi.nlm.nih.gov/pubmed/7626787

The term Lyme is perfect to show how retarded our way of thinking is in the west. We chose brevity over completeness in an extreme way. Lyme. 4 letter word, easy. In Europe it is sometimes called Borreliosis, it is a longer, complicated more terrifying name than Lyme, so more suitable. There are at least 130 known subspecies of this bug. There are minute differences in their genome that make them create severe disease in some type of tissue or in another... or small differences in presentation.

www.jpeds.com/article/S0022-3476(15)01346-3/abstract
this girl , after 4 weeks of doxy, saw remission of ACA.

I would be more curious why 4 weeks of doxy cures some ppl, even in late stage, like that girl, and not others. THAT is the 1 million $ question....

A checkup one year after her ACA diagnosis and treatment, the girl was still fine, 1 year of remission is pretty hefty return after 4 weeks of doxy if u ask me ....

RedLabel said...
Dacarte, you say you were symptom free for 6 months. Did you gain anything back during this period or did the fat loss just stop?

Just stopped. I tried physical therapy in the initial problem areas and it helped me gain strength and regional muscle growth (which is good), but no return of the collagen/fat that is supposed to layer around your joints, to give it that healthy "supple" look.

I'm trying to do different things to see what helps. It's just shooting in the dark right now. I really need to know more the scientific reason why so I can target it more directly.

Shooting in the dark it's the very basic thought process of trying to consume a significant more amount of calories and fat per day. I also switched over to a much better collagen support.

This has created a little but at the same time real improvement. But the improvement is too small. I'm force feeding my body to do something it is currently having trouble doing. It doesn't seem right. It wants to heal a little bit but then stops. It may even fluctuate.

Like my ankles start recovering, I can see it, I'm happy about it. Things are looking up but then it digresses again. And it's starts recovering once again but then digresses. But then my wrist improves but then plateaus and doesn't keep recovering, but it also doesn't digress like my ankles.

It's definitely a puzzle and my very non-scientific "just eat a bunch more food" approach is fleeting. It seems this is something much more delicate, but yet I'm trying to nail it in with a sledge hammer.

For me the bruising" was sites of specific weird zombie wasting ...i believe it to be dying tissue from nerve damage cause by bart and lyme .
Much like aca in the sking but on a deeper facia level
for me my logic went
1) stop the damage (hd treatment )(abx bvt rife (
2 ) repair the nerves
3) add growth factors with colostrum and royal jelly if you cannot afford stem cells ...

why doesnt matter as much as what imo

your not alone
http://forums.phoenixrising.me/index.php?threads/fairly-rapid-tissue-and-muscle-wasting-during-disease-onset.26058/

check this dudes hands ..he probably believed 1 month of roceph cured him
http://jnnp.bmj.com/content/63/2/257.full#ref-1

Post Edited (bluelyme) : 8/8/2017 4:00:17 AM (GMT-6)

logmoss82 said...
The mechanism is the Lyme bacteria itself and how it is interacting with the human physiology and biology of it's host, which occurs differently in different people. Supposedly, this condition is more common in the European strains of Lyme. I would surmise that the specific mechanism is collogen disruption. However how to address this is more difficult. Perhaps supplementing collogen or hyaluronic acid. But just like Lyme neuropathy or Lyme carditis, or any physical manifestation of this disease, the most effective treatment is to eliminate the underlying pathology which is the Lyme itself. This will allow these symptoms to subside and allow the body to resume normal function. This is our best hope as far as I am concerned, and if we KNOW something is being caused by Lyme for sure as ACA is documented to be even by admission of the CDC, then we need to effectively treat Lyme to treat this condition. The question of exactly how to treat Lyme properly and effectively can be the hard part, as many of know.

Thanks, logmoss. I always look forward to your input as you are very analytical with your responses. You speak my language.

Yes, I know the root cause is lyme. However successfully treating lyme can be such a long uphill battle and that I am hoping to find a way to treat the fat and collagen loss more successfully while I also treat lyme.

But I guess this magical way to treat this symptom probably doesn't exist. Yes, I have taken protein and collagen supplementation with real, noticeable improvement, however they are small.

But you are right. If the agent (lyme and co) is still in full force in my body, then progress will be slowed or reversed because the agent causing all this is still present. Like trying to fill a bucket but it has a leak in it.

dacarte3,

I am curious what happened in those 6 months of good time.
Where did you leave Buhner Protocol? Were you having any symptoms when you left? And what changed in those 6 months, diet, stress, lifestyle? Do you have any test record of before and after? I am sure there must something to analyze that can be traced back to why it had to relapse, And why didn't it get completely healed at the first attempt.