Really trying to hold on to some hope

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1000Daisies
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Date Joined Apr 2016
Total Posts : 1930
   Posted 10/6/2017 9:06 AM (GMT -6)   
And one more thing, dacarte... I don't go into specifics, but one of my kids had so many terrible extreme diagnosis during those early years. Supposedly, they were all life long diseases with no cure. But they were wrong. All of those diagnosis have ALL BEEN DROPPED years ago with treating the lyme/coinfections. Supposedly, we "cured the incurable". Silly, ignorant doctors. So very wrong they were.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Very sick now despite being treated for years, still very bad
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

ChickenArise
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Date Joined Nov 2015
Total Posts : 1122
   Posted 10/6/2017 9:33 AM (GMT -6)   
I wish I could help you with some advice like you did for me.

The first video in the most recent set of videos I posted in the thread 'Does this sound like us?' reminded me of you as it spoke about logic in a hauntingly similar manner in which you spoke in this thread.

For now I will keep you in my prayers.

2014 Mold Sick,2015 Clinical Lyme and co.,2016 Morgellons,2017 Remission
YT (for now): www.tinyurl.com/ClintFromNYtoVA
Twitter: @ClintFromNYtoVA
Blog: www.fascinatingtimetobealive.blogspot.com/
“The privilege of a lifetime is to become who you truly are.”


dacarte3
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Date Joined Feb 2016
Total Posts : 1496
   Posted 10/6/2017 10:42 AM (GMT -6)   
Daisies,

Which is why I'm doing both, to cover my basis. Of course abx will be for a shorter term like 6 month where herbs will be long term. Probably for life.

CD3764
Forum Moderator


Date Joined Sep 2014
Total Posts : 4508
   Posted 10/6/2017 1:41 PM (GMT -6)   
Hey dacarte,

It's been a long while since I've posted on the forum but, I stopped by today and just had to post here.

So very sorry to hear about your concerns!

My personal experience leads me to ask if you've ever considered that your symptoms might represent damage that needs to be addressed.

I say this because I could NOT get rid of the various manifestations of peripheral neuropathy I had....and this was after 5 months on abx , 2 years on herbs (6 months on full Cowden and 18 on Buhner's full Lyme/Bart/Babs protocols) and doing tons of things to heal nerves.

I recently decided to consult a Functional Medicine Dr.

Her first recommendation was B12 shots. I've long known that blood levels of B12 do not necessarily indicate that the body has enough so I decided to go for it.

It's only been 3 wks. and the improvements are HUGE.

She also ran an organic acids test:

/www.greatplainslaboratory.com/organic-acids-test/

The results showed that I have a few things going on that could contribute to peripheral neuropathy and we're addressing those issues with supplements and a few herbs.

Take a deep breath - your path will become clear and you will heal.......I have no doubts.

Post Edited (CD3764) : 10/6/2017 1:46:56 PM (GMT-6)


Hoagie
Regular Member


Date Joined Jul 2017
Total Posts : 209
   Posted 10/6/2017 1:57 PM (GMT -6)   
decarte - Are you familiar with Dr Wahl's testimony?

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 633
   Posted 10/6/2017 4:32 PM (GMT -6)   
CD3764 - I too have the peripheral neuropathy post lyme and co-infections treatment. I've been on shots of methylated B12/B6/Folinic Acid for 2 years, so it's not the problem. Mine comes and goes, worse if I don't exercise. What other things could be contributing? What other treatments? Very interested.
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2013
   Posted 10/6/2017 7:13 PM (GMT -6)   
CD3764 said...
Hey dacarte,

It's been a long while since I've posted on the forum but, I stopped by today and just had to post here.

So very sorry to hear about your concerns!

My personal experience leads me to ask if you've ever considered that your symptoms might represent damage that needs to be addressed.

I say this because I could NOT get rid of the various manifestations of peripheral neuropathy I had....and this was after 5 months on abx , 2 years on herbs (6 months on full Cowden and 18 on Buhner's full Lyme/Bart/Babs protocols) and doing tons of things to heal nerves.

I recently decided to consult a Functional Medicine Dr.

Her first recommendation was B12 shots. I've long known that blood levels of B12 do not necessarily indicate that the body has enough so I decided to go for it.

It's only been 3 wks. and the improvements are HUGE.

She also ran an organic acids test:

/www.greatplainslaboratory.com/organic-acids-test/

The results showed that I have a few things going on that could contribute to peripheral neuropathy and we're addressing those issues with supplements and a few herbs.

Take a deep breath - your path will become clear and you will heal.......I have no doubts.


I'm interested too in what the organic acids test showed that could contribute to peripheral neuropathy. I just received my kit to do the test (mine is through Genova though) and I too have neuropathy. My doc ordered it for chemical sensitivity though.

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 633
   Posted 10/6/2017 9:22 PM (GMT -6)   
I also had the OATS test done before treatment. Since my first symptoms was a numb big toe, I always thought that Candida was causing my neuropathy.

My results indicated Hi yeast/fungal metabolites and High HPHPA (an abnormal phenylalanine metabolite produced by Clostridium sporongenes, c.Botulinum and others), Extremely low Beneficial Bacteria.

My LLMD said many of his patients had the clostridium and he used to be really worried about it, but after great lengths to try to eradicate it, there were virtually no improvements or changes so he stopped worrying about it. Probiotics Lactobacillus and Sacchromyces will help crowd it out. FYI, This is NOT the same as Clostridium difficile which is very dangerous.

I started researching this and it seems it is a bacteria that actually produces amino acids that the body uses and if you have too much, it can produce some psychiatric problems on the autism spectrum. That's interesting because Aspergers runs in our family...

I'm curious, for those of us with neuropathy, if the Candida will be the link...
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1496
   Posted 10/7/2017 9:10 AM (GMT -6)   
CD3764 said...
Hey dacarte,

It's been a long while since I've posted on the forum but, I stopped by today and just had to post here.

So very sorry to hear about your concerns!

My personal experience leads me to ask if you've ever considered that your symptoms might represent damage that needs to be addressed.

I say this because I could NOT get rid of the various manifestations of peripheral neuropathy I had....and this was after 5 months on abx , 2 years on herbs (6 months on full Cowden and 18 on Buhner's full Lyme/Bart/Babs protocols) and doing tons of things to heal nerves.

I recently decided to consult a Functional Medicine Dr.

Her first recommendation was B12 shots. I've long known that blood levels of B12 do not necessarily indicate that the body has enough so I decided to go for it.

It's only been 3 wks. and the improvements are HUGE.

She also ran an organic acids test:

/www.greatplainslaboratory.com/organic-acids-test/

The results showed that I have a few things going on that could contribute to peripheral neuropathy and we're addressing those issues with supplements and a few herbs.

Take a deep breath - your path will become clear and you will heal.......I have no doubts.


After gathering myself a little I asked myself, "what have been my symptoms recently". They are nerve pain, twitching, wasting, numbness and tingling, sore burning feet.

Then I asked myself have I experienced all of these symptoms before. And the answer is "yes".

I then asked myself is there any symptom that is completely brand new? I thought long and hard about it and the answer is "no".

So as sh**ty as these symptoms are and some I'm experiencing much more intensely this time around, none of it is brand new, none.

So I'm going to go see the neurologist, just because getting things checked it out can only help. But I'm also going to go see a Functional Med doctor that ISN'T an LLMD.

Just to get a different non-lyme, non-lyme box, non-lyme perspective (and dare I even say non-lyme bias perspective) point of view.

I won't even mention Lyme to this functional doctor and see what a different view and opinion can bring.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 5754
   Posted 10/7/2017 9:50 AM (GMT -6)   
Just wanted to add a couple thoughts -

My Lyme-knowledgeable neurologist sees many Lyme pts and suggests that inflammation is the cause of a lot of the neuropathy we experience so that's something to look into. I've always had success with japanese knotweed (also an antimicrobial so use cautiously) and turmeric.

Also -
I've been treating for almost 4 yrs (almost done with the primary pieces) after going undiagnosed for 16 yrs so I have a lot of chronic problems to solve. But it's taken that long to resolve many of my sx. It's been an agonizingly S---L----O--------W process. But over time, I've made progress. Partly because it's simply taken that long to try different modes of treatment, in different combination and it's taken awhile to get around to addressing everything.

I'd post ALS treated as Lyme stories for you if you like. I share them with people who have been dx with ALS to encourage them to treat w/ LLMD. More and more, these neurodegenerative diseases are being considered with an underlying bacterial component and when treated as such, the dx is changing.... that doesn't mean people are "CURED" 100% - I don't think that exists. I do think people are avoiding a life sentence with successful Lyme tx.

Hang in there - keep posting. Look at all the support!

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 1930
   Posted 10/7/2017 1:07 PM (GMT -6)   
CD3764 said...

My personal experience leads me to ask if you've ever considered that your symptoms might represent damage that needs to be addressed.


^ This. In general, I don't think we address this enough here or IRL. I totally agree on this question, and I strongly suggest people think about this too.
I do believe the pathogens/treatment (abx) can causes damage, and it's hard to distinguish between symptoms and damage from the illness/treatment.

Dacarte - I know you weren't a big fan of HBOT, but it was an absolute game changer for Kid#1 in helping to resolve one of his more stubborn symptoms which I feel was related to damage/inflammation that supplements/herbals/meds just couldn't "fix". It was huge in his recovery. So, I do believe absolutely that damage is a factor more than we realize. Some people are seemingly able to rebound, whereas others need more help to recover (like my Kid#1 who was an extreme case IMO). Whether it's HBOT or whatever, healing is so essential for some of our lasting symptoms.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Very sick now despite being treated for years, still very bad
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26285
   Posted 10/7/2017 2:09 PM (GMT -6)   
While some of this may be from damage - that need to be 'fixed' ..or maybe just more time to heal...it does appear that DaCarte has symptoms of active infection.

He had gotten to a point of almost sign/symptom free...for a period of six months...and now those symptoms are back.

That to me isn't 'just' damage....but infection that needs treatment as well.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 10/7/2017 2:12:41 PM (GMT-6)


Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 5754
   Posted 10/7/2017 2:10 PM (GMT -6)   
1000Daisies and CD -

I agree. In fact, that is the current "theory" about why some "advanced" ALS and other neurodegenerative cases don't benefit from abx tx--the damage is too comprehensive at late stage or the person simply cannot get a medical entity to prescribe high enough doses of abx or for long enough... or cannot tolerate abx in the context of this damage. I also feel that it's doubtful these people are comprehensively treating like they should be (with the detoxing and support that we all talk about in the Lyme community) and they're certainly not carefully building a protocol over time, in stages, like we do to heal body systems and allow our immune systems a chance to regain dominance - they're literally racing against the clock.

Extrapolating that theory, in earlier cases of Lyme tx with "early stages" of various neurodegenerative disease x,y or z - it's also where I'd focus attention - on healing the damage. I think that can also be complicated for some but that's where I'd focus as well.

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1496
   Posted 10/7/2017 3:35 PM (GMT -6)   
Piroutte and girlie,

I'm with you it's why I'm doing both herbs and abx and going aggressive. It's hasn't been too long in Lyme time and perhaps I'm being impatient, once again relatively speaking.

1000 daisies,

Using hbot (again) has crossed my mind again. I had my doubt it "fights" Lyme but I always believe the scientific evidence that it can heal tissue and cells.

The military uses it for this reason in soldiers and professionally athletes use it for the same reason as well.

So there's something "there" there or these institutions wouldn't waste the time or money.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1496
   Posted 10/7/2017 4:05 PM (GMT -6)   
I greatly appreciate everyone's support, ideas, suggestions, and advice.

I have to remember that I've had many symptoms since the relapse. Many of them uniquely lyme, like sore burning feet, the funny feeling in feet that feels like I'm walking on floor full of quarters, clamy wrinkle fingers that some times peel, head fog, hungover off-kelter feeling, etc. (once again all symptoms I've experienced before)

But my mind is just lazer focused on one symptom and then I'm letting my thoughts run wild.

If there was no other lyme symptoms accompanying it I should worry much more.

I do however believe my biology is less strong this time around then it was the first time around and that is having an affect.

As always you guys have re-ignited a glimmer of hope.

I'm not going to sit here and pretend I'm okay with what is happening, but it is what it is (for now), so I can't waste time boohoo'ing about it because it's already happened.

I have to keep at it and keep trying everything (within reason and within evidence based science) and if this thing takes me down I'm going to go down swinging.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Jinna
Veteran Member


Date Joined May 2017
Total Posts : 692
   Posted 10/7/2017 4:29 PM (GMT -6)   
First, I'm also sorry you're going through this...
It's unbelievable what you guys are going through.

I haven't read all the posts, but the one with supplements and herbs, yes.
I don't see many neurotoxin binders there.

MSM was a big help, as well as chlorella and bear garlic.

During Buhner, I could never LIVE without these binders.

The 1st book of Buhner ignore binders, and that was the weakest part of the protocol, in my opinion.
I don't know the other books as I did not read them.

I was basically LIVING on binders, more than anything else... or I would just be totally dysfunctional.

---------------------------
Another topic to consider is EMRadiation.

I listened to an interview with dr. K now, and he said that normal radiation found in houses breaks cell walls by displacing calcium (if I understood correctly).

He said that ion pumps get dysfunctional and then you accumulate more toxins and heavy metals inside, nutrients cannot get in well (no matter how much you take).

The same way nutrients don't get in well, supplements and herbs neither.
so it's not the amount the problem, but how to correct these ion pumps again.

Cell potential goes lower, you get CFS. Alzheimer, many CNS diseases.
The problem with heavy metals inside is the antenna effect: all antennas are metallic to get the radiation.

We get these heavy metals inside us, that accumulate, we become even more antennas to bad EMRs.

In the past, chelators did help people he said.

Now chelators help only minimally, the load of heavy metals do not decrease because people are exposed to EMRs the whole time, the cell wall ion pumps are weak, not functioning well.

He's suggesting that simple ionic foot baths can do something to invert that situation.

It helps raising cell potential, for example, plus pull some toxins from the feet skin.

He said he has seen very good results with autistic kids only due to ionic foot baths. (in another video).
It takes 4 months to start seeing results , usually, he said. Foot baths 2x a week is the average.

I'm in contact with a lady in Canada, suffering from lyme and babs + bart for more than 10 years for sure.
Severe symptoms.

After a couple of months on an ionic foot bath (not the expensive one dr. K recommends, but a model of 200-300 dollars), she's having major healing crisis NOW.

Not before.
Babesia seems to be getting mad (herxes), but she wrote me today saying it's the first time she starts to feel hopeful again.

I'm particularly sensitive to EMRs, so I know that this stuff makes me feel crazy, even though I have no more lyme for the last 8+ years.

I still get mad when I'm bombarded with EMR in certain places.
I feel they're harming me.

Dr. K mentioned that he had several Alzheimer disease patients, who weren't Alzheimer, after they became exposed to smart meters (in a matter of weeks, they BECAME Alzheimer!!).

He said, smart meters ARE like a cell phone tower INSIDE your house.

It's a crime and not only sensitive people suffer: he sees blood values changing from the non-sensitive people as well.

As for me, I know my cell potential was weak, severely depleted, just because by starting on the violet Ray of Tesla, it was like night and day: so much difference in energy, stamina, relaxation...

And my lyme had been long gone when I started that.

Only today, I understood that what's depleting me from that ionic energy could be EMRs too (not only infections).

mcspike
Regular Member


Date Joined Sep 2016
Total Posts : 165
   Posted 10/7/2017 5:20 PM (GMT -6)   
Hi, Ive been feeling the same-thinking, wondering if I have ALS because especially after the entire month of September I had literally NON-STOP leg pain, twitching, and a weird kind of weakness unlike ANY id experienced since starting Lyme treatment in June of 2014...

May-September I was on Alinia w/amox in May, then Minocycline Late July thru Sept. But i did the minocycline off-n- on whenever symptoms flared I stopped for a week, then started back on minocycline.

I've ceased ABX treatment altogether because symptoms were so severe.
Im currently in the mind that its meant to be I die from this, and today Im not having neuro/psyche symptoms-Im thinking clearly!

Im now going to invest in eternity!

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1496
   Posted 10/7/2017 9:54 PM (GMT -6)   
Went through Buhner's literature once again and focused on muscle wasting/atrophy.

He talks alot about muscle tissue/cell breakdown and atrophy. Emphasizing Bartonella and Mycoplasma.

I swear I think sometimes the "co-infections" are a lot worse than Borrelia.

I think people that get worse are not addressing the co-infections as hard, me being one of those people.

I've never really went hard after bart specifically, even though I have had the hallmark sore soles and red streaks symptoms before.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26285
   Posted 10/7/2017 10:02 PM (GMT -6)   
dacarte3 said...
Went through Buhner's literature once again and focused on muscle wasting/atrophy.

He talks alot about muscle tissue/cell breakdown and atrophy. Emphasizing Bartonella and Mycoplasma.

I swear I think sometimes the "co-infections" are a lot worse than Borrelia.

I think people that get worse are not addressing the co-infections as hard, me being one of those people.

I've never really went hard after bart specifically, even though I have had the hallmark sore soles and red streaks symptoms before.


Yup, the co's are worse than Borrelia from what I've read, and seen.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1496
   Posted 10/7/2017 10:21 PM (GMT -6)   
Girlie said...
dacarte3 said...
Went through Buhner's literature once again and focused on muscle wasting/atrophy.

He talks alot about muscle tissue/cell breakdown and atrophy. Emphasizing Bartonella and Mycoplasma.

I swear I think sometimes the "co-infections" are a lot worse than Borrelia.

I think people that get worse are not addressing the co-infections as hard, me being one of those people.

I've never really went hard after bart specifically, even though I have had the hallmark sore soles and red streaks symptoms before.


Yup, the co's are worse than Borrelia from what I've read, and seen.


I'm also seeing tons and tons of articles on line with lyme and muscle wasting/atrophy and it's slowly restoring my faith that it's lyme.

Not that it makes it any better but at least theoretically there's something that can be done about it.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1496
   Posted 10/9/2017 3:46 PM (GMT -6)   
Girlie, when you were experiencing wasting did you see these critter move to a different parts of the body?

I'm experiencing improvement in some areas while getting worse in others. It's like a region of the body stops taking fire recovers a bit while another area seems the get under attack again.

It's like they retreat and then hold the line elsewhere.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26285
   Posted 10/9/2017 4:34 PM (GMT -6)   
dacarte - my wasting happened pretty much all at once, with the weight loss. This was within the first couple of months of having lyme.

My legs, arms, back (especially left side thoracic area), face, hands (worse on left side)
I had these hollows under my eyes...I looked sick.

Even now my fingers on the left hand - if I feel them they're still worse on my left hand...just nothing there really..except skin and bone. They work fine though.

I am still rehabbing...trying to get muscle tone back.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1496
   Posted 10/9/2017 5:37 PM (GMT -6)   
Girlie said...
dacarte - my wasting happened pretty much all at once, with the weight loss. This was within the first couple of months of having lyme.

My legs, arms, back (especially left side thoracic area), face, hands (worse on left side)
I had these hollows under my eyes...I looked sick.

Even now my fingers on the left hand - if I feel them they're still worse on my left hand...just nothing there really..except skin and bone. They work fine though.

I am still rehabbing...trying to get muscle tone back.


It's worse on my left side as well (though both sides are/were affected). If I can get my left side to just look like my right, I would be willing to accept that.

I'm afraid to rehab these problem areas for I fear I may make it worse. Because sometimes it seems that way. Sometimes it seems rehabbing the area speeds up the problem.

I'm in a catch 22 it seems.

Perhaps it's too early in treatment.

I know last time I wasted I didn't rehab until until 6 months later when I felt nearly symptom free. Perhaps I need to do the same this time as well.

All of the mass I re-gained in 9 months of dedicated rehab down the drain. 9 months gone in 2 months. I'm back to square one, like the beginning of lyme.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1496
   Posted 10/9/2017 5:43 PM (GMT -6)   
Also Girlie,

Do you have/had mycoplasma?

I just found one of your post in an old thread and you described so many things exactly what I'm going through right now. It's not "kind of the same" or some of it the same, but the SAME.

So I'm wondering.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26285
   Posted 10/9/2017 8:37 PM (GMT -6)   
dacarte3 said...
Also Girlie,

Do you have/had mycoplasma?

I just found one of your post in an old thread and you described so many things exactly what I'm going through right now. It's not "kind of the same" or some of it the same, but the SAME.

So I'm wondering.


I don't know - was never tested for it. I do know via testing that I have Lyme and Bart.
Mycoplasma should be taken care of when treating the three B's (if treating with abx)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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