Lyme ALS

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.

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)

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

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 ...

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

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.

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

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

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.....

Hi OriolCarol,

I am sorry you are having these fearful experiences.

If you feel the need to talk further about it we are here and just post more questions.

It is not easy to feel this way or to face fighting these infections. We do understand how difficult and overwhelming it can be.

I know we all cant talk face to face, but we do battle Lyme and co together.

All of us. Fighting and hoping for the best for each other every day on this forum.

I hope you have a peaceful night and remember you are not alone.

Take care, Jo

Post Edited (goshawk) : 4/30/2018 4:55:19 PM (GMT-6)

Carol - I can’t tell much from that photo.

But even if it is atrophy - that is not unusual for Lyme and coinfections.

I lost 14 pounds in a very short time - I wasn’t heavy to begin with - I had muscle atrophy. Arms, legs, back etc.

I am not losing anymore muscle now and in fact I’m getting tone back. My husband commented on my biceps yesterday.

You haven’t been treating long - it’s going to take awhile and you may also need to address Babesia.

goshawk said...
Hi OriolCarol,

I am sorry you are having these fearful experiences.

If you feel the need to talk further about it we are here and just post more questions.

It is not easy to feel this way or to face fighting these infections. We do understand how difficult and overwhelming it can be.

I know we all cant talk face to face, but we do battle Lyme and co together.

All of us. Fighting and hoping for the best for each other every day on this forum.

I hope you have a peaceful night and remember you are not alone.

Take care, Jo

Beautiful words, Jo.

OriolCarol,

I don't respond on most of your posts because I know nothing about antibiotics or a lot of the severe symptoms you're having that are so alarming, but I do read many of them. You're not alone.

I've seen some really exceptional responses from others on this particular thread, including from those who had what appeared to be ALS.

When you get scared, go back and re-read what others have said and try to focus on what they are telling you. I think that will help a) reign in the fearful thoughts of worst case scenarios and b) help you get a better understanding of what is happening to you. The more you read it, the more sense it will make, and I think it will help you cope better with the fear these symptoms bring.

There is a lot that is not known or understood about Lyme/coinfections, but the collective knowledge and experience of the folks on this forum, IMO, is greater than what you would get from any one doctor.

Many on this forum have been treated by and have talked with the top doctors in this field, and these folks share generously and freely of all they know and understand. Personally, I find that deeply comforting.

Hi Sjtom, welcome to the forum! I certainly have gotten a lot of muscle twitching from the infections, especially worse when I'm herxing. Epsom salt can intensify symptoms because it is moving a lot of toxins. You may want to use less salt or stay in for a shorter period of time, it might be too much detox at once. Have you tried infrared sauna? I've found that to be an extremely helpful detox method.

What therapeutics are you currently taking for the infections? do you know if you have any coinfections? unfortunately lyme is often a clinical diagnosis and the tests aren't great. But I do believe band 41 is indicative of flagella of spirochetal organism.

Are you working with an llmd?

I'd also suggest creating a new thread asking your question, you'd likely get more responses that way.