New Topic Post Reply Printable Version
35 posts in this thread.
Missing Key Value : en-US, 591 :
 1  2 
[ << Previous Thread | Next Thread >> ]

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/28/2018 6:40 PM (GMT -6)   
I am very overwhelmed and I need to write this.

I have been tempted to abandon the treatment, I know I should not do it, because things will be worse ...

I'm terrified with the idea of having a false ALS, or rather, of the motor neuron produced by the spirochete ...

The fasciculations are horrible, they are constant in my legs ... today I have looked at my legs, and the right I see it smaller, with a bulge inwards ... I think it is atrophy ... I'm probably obsessing, but I suffer .

I understand that fasciculations are not benign, when they appear after strength with some muscle. If I tense my leg, and I relax I have fasciculations ...

I'm terrified, I think I'm going to die of an ELA.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/28/2018 6:50 PM (GMT -6)   
Carol - why would you abandon treatment?

If it is 'ALS ' - don't you think it's caused by the Lyme and coinfections?

I suffered muscle atrophy when lyme first hit...and I mean in the first several weeks...it's not getting any worse...it's even getting better now.
I can flex my biceps now...and they kinda get firm...not as good as they used to be...but better.

My legs aren't coming around as fast though.
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

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5095
   Posted 4/28/2018 6:50 PM (GMT -6)   
Many are or were overwhelmed, not that thats comforting. I was sure i had MS. Was a tip top shape pro-ranked athlete and lyme made me a gimp at one point (years). What was happening out of my control was shocking.

I have not read all your posts, but will say lyme creates huge anxiety. Natural supplements for anxiety do help with the overwhelming feel while your treating lyme.

Not having good tests for these bugs just adds to the anxiety. It is good to test for other things to though- for your body and sanity.

Post Edited (astroman) : 4/28/2018 5:57:14 PM (GMT-6)


BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 4/28/2018 7:07 PM (GMT -6)   
Agreed with Astroman. I was convinced I had MS as well. I lost the ability to walk or stand for more than a minute or 2. I too have been an athelete my entire life and have completed Insanity program and many others numerous times, quite easily. My balance was AWFUL, my legs would shake and so many more symptons. That was about 8 months ago. Today I went to the zoo with my kids. It was surreal!! I have only been treating for 3 months and I have seen real improvements. Stick with it!!!! I even developed POTS with lyme, (still have it) but things do get better.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1304
   Posted 4/28/2018 7:26 PM (GMT -6)   
ALS is a challenge-there is a good book called "Eric is Winning".
www.preventionandhealing.com/articles/Time-to-Heal-at-Last-ALS-amyotrophic-lateral-sclerosis.pdf

I thought this might be helpful

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/28/2018 7:56 PM (GMT -6)   
I have many fears and these surpass me.

I am afraid that the mino / rif treatment is not working as it should.

I'm afraid it's too late to try other things ...

Now the fasciculations come suddenly with ramps ... and I think the truth has affected me the motor neuron ..

i think too many things, and thinking too much has caused me to have lost 8 months of treatment, which I could have taken advantage of .... but because of my mind, I have wasted them ... and now I fear it's too late.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/28/2018 8:38 PM (GMT -6)   
OriolCarol said...
I have many fears and these surpass me.

I am afraid that the mino / rif treatment is not working as it should.

I'm afraid it's too late to try other things ...

Now the fasciculations come suddenly with ramps ... and I think the truth has affected me the motor neuron ..

i think too many things, and thinking too much has caused me to have lost 8 months of treatment, which I could have taken advantage of .... but because of my mind, I have wasted them ... and now I fear it's too late.


OriolCarol - you haven't been treating for very long... 8 months isn't long - so please don't be discouraged by the lack of progress. Is there anything that has improved?
There's a lot of trial and error...have you discussed Babesia with your Dr.? Is that something he/you are considering pursuing?

What do you mean you wasted 8 months? What would you have done differently?
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

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 4/28/2018 9:08 PM (GMT -6)   
ok so you stop abx treatment .... and then what ? what is the treatment for ALS ?

If there were a treatment for that, i'd understand your decision to stop. Like for MS, you can treat MS now with some very strong drugs like ocrelizumab.

Fine, but ALS ? You cannot treat it with anything and the prognosis is very grim. So the real question is, do you have a choice ? If you have positive lyme blood tests and symptoms (and it seems you do) the only treatment that you can take is the lyme one, as far as i know and i am not a dr, but still, ALS does not really have a treatment.

I have motor neuron damage too and i am still here 4 years after my diagnosis, and it's probably only because i take my lyme meds ... i have some muscle atrophy of course but i can run , jump, exercise etc.... i'd say if this were "normal ALS", in 4 years i'd be either in bed on ventilator or at least unable to walk. If not dead.

This is from the NIH page: "Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, about 10 percent of people with ALS survive for 10 or more years."

So i am already 4+ years into it and RECOVERING. I mean i am MUCH better than 4 years ago. This is unheard of in ALS. Recovering ?!

So what am i sick of ?

But this is known, lyme can present with motor neuron damage, please read the abstract of this paper
/www.ncbi.nlm.nih.gov/pubmed/19670562
or this
/www.ncbi.nlm.nih.gov/pubmed/24397499

it's a weird disease and it mimics MS, ALS, Alzheimers and many others ...

Please think of the options you have if u stop treatment. Is there a cure for ALS ? Is there at least a treatment for ALS that works? I understand most treatments only make the symptoms easier to take but do not delay the progress at all and the end is quite the same...

Maybe what u need is a change of lyme treatment, or LLMD, better/stronger meds. Some patients only respond to stronger medications like dapsone / vancomycin etc... mino + rifampin is a really strong combo and it is adequate treatment for lyme and will surely at least slow the progress of it, but it is not in the new category of treatments that are now used on the sickest and the unresponsive people.

so my point is u still have a lot of bullets to try before giving up ...

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4913
   Posted 4/29/2018 3:02 AM (GMT -6)   
my als was bart and a spirochet with 7 other pathogens ,,,twithcing is scary but it just means you need magnesium and nerve protection . i can show you your spirochetes under the microscope if you need proof ...it took iv abx 2.5 yr bvt and much more for me to be back to work from "youre gunna die in 2-5 years , sorry your borrilia test is a false positive "
if you really want to fight and live you will muster what you need to . grab your boot staps , surrender pride and truck on thru . this guy got better on tinidazole ...hmmm www.shackel.org/mytheory.html

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/29/2018 8:02 AM (GMT -6)   
You have reason, but the situation surpasses me and it gives me a lot of anger to be so weak psychologically ...

I know there is no possible treatment for ALS, but I have also seen articles where ALS patients who took minocycline succumbed much faster ... I think this will happen to me ... every time I have a fasciculation, which is constantly , I think my diaphragm is atrophying and will die of respiratory failure.

I am very influenced by many people ... the doctor who told me that adding rifampicin to minocycline, I would lose all the effectiveness ... or maybe I should be with ceftriaxone and tinidazole etc ... I am very desperate and I just feel like I am losing this fight.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4913
   Posted 4/29/2018 12:12 PM (GMT -6)   
No single doc can do it it costed 40 k and 9 practitioners to get me walking again. Bvt works ...on paper and real life . I was so scared i was willing to do anything ....are you ?. Get rocephin asap ...creak trail trats als lyme ...roceph zith riffy and tini all at once til plataue. I know 2 other als survivors doing it with bvt

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/29/2018 1:22 PM (GMT -6)   
Bluelyme, when you say riffy, what do you mean? Rifampin?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/29/2018 1:31 PM (GMT -6)   
OriolCarol said...
Bluelyme, when you say riffy, what do you mean? Rifampin?


In case he isn't back soon - yes, that's what he means. Rifampin
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

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/29/2018 2:38 PM (GMT -6)   
Jajaja Girlie, than you! smile

Tomorrow i'll go to do an EMG... i'm big scared.... sad

Is it painfull?

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/29/2018 5:24 PM (GMT -6)   
mpost, a nerve pain can be directed caused by inmune system when i'm herxing? Since I started but mino i had a strong attack and now i have pain in all my nerves but it's like residual...

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/29/2018 6:45 PM (GMT -6)   
I've found that my symptoms could be mononeuritis multiplex but it can be produced for many reasons... lyme, drugs like mino etc...

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/29/2018 7:10 PM (GMT -6)   
I have several doubts, in case of being a multiple mononeuritis, will abnormalities in the EMG be seen? Mononeuritis is due to direct damage of the bacteria, or the immune system? If so, would corticosteroids be effective along with the abx?

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2550
   Posted 4/29/2018 9:01 PM (GMT -6)   
Do you have amalgam fillings? The few people I know who’ve had lyme/als have had amalgams. If you have them I would get them out.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/29/2018 9:47 PM (GMT -6)   
OriolCarol said...
Jajaja Girlie, than you! smile

Tomorrow i'll go to do an EMG... i'm big scared.... sad

Is it painfull?


I had an EMG and a NCS -one after another.

I wasn’t prepared and yes one of them hurt. But the test is quick.
They tested my arm (my bad side)
Funny thing at one point my leg kicked up

This was ordered by the Neurologist - I was sent to him by my regular Dr to rule out MS, ALS, and Parkinson’s disease. The Neuro sent me to the Physiatrist who did the nerve/muscle tests.

You can handle it OriolCarol - don’t worry - you’ll be ok.
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

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4913
   Posted 4/29/2018 11:24 PM (GMT -6)   
they told me my emg was not dirty enough for that dx and wait til it was >>>i had to ask him to clean the electrocution needle with alcohol it hasd been use on previous client with the exception of elena frid most neurologists are barbaric gerbils imo

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/29/2018 11:33 PM (GMT -6)   
bluelyme said...
they told me my emg was not dirty enough for that dx and wait til it was >>>i had to ask him to clean the electrocution needle with alcohol it hasd been use on previous client with the exception of elena frid most neurologists are barbaric gerbils imo


Ugh - I hope the physiatrist cleaned the needle. smhair
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

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4913
   Posted 4/30/2018 3:45 AM (GMT -6)   
best of luck carol keep us posted... take your health back when your ready please dont do steroids or any immunosuppresive ...ms is bs dx too

Cberg
Regular Member


Date Joined Jul 2017
Total Posts : 52
   Posted 4/30/2018 8:33 AM (GMT -6)   
Please remember these two FACTS.

1. A dirty emg by itself does not Mean als.
2. A dirty emg can be caused by MANY conditions.

I've been down this road.

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 4/30/2018 2:29 PM (GMT -6)   
I'm stupid ... I thought it was the EMG today ... but it's this Thursday morning.

I have more time to prepare the EMG... i'm scared

Surely say a nonsense, and this is caused by lyme with 99% safety, but ... minociclone and plaquenil, can cause atrophy and myopathies?

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 4/30/2018 3:42 PM (GMT -6)   
OriolCarol said...
I'm stupid ... I thought it was the EMG today ... but it's this Thursday morning.

I have more time to prepare the EMG... i'm scared

Surely say a nonsense, and this is caused by lyme with 99% safety, but ... minociclone and plaquenil, can cause atrophy and myopathies?


dude i had muscle artophy long before taking any mino....

true that, when i first started mino i had huge herx and it involved abnormal heartbeats , feeling cold , like dying , head pressurr, face going numb, etc.... i then attributed these on mino side effects. i was barely able to tolerate 28 days of it. with breaks....

okay fast forward 2 years and im again on mino. same dose. none of these effects show up now and i am on this mino combo for 8 months!!. no breaks!

so what was that back then? A HERX that's what it was.....
New Topic Post Reply Printable Version
35 posts in this thread.
Missing Key Value : en-US, 591 :
 1  2 
Forum Information
Currently it is Monday, August 20, 2018 7:38 AM (GMT -6)
There are a total of 2,994,645 posts in 328,155 threads.
View Active Threads


Who's Online
This forum has 161294 registered members. Please welcome our newest member, Fred700.
255 Guest(s), 9 Registered Member(s) are currently online.  Details
suppwife, bluelyme, Jackiema44, Nervous nelly, Tudpock18, Minnesota, halbert, iPoop, Lanie G