My ALS-Like thing

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
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alfon
Posts: 12
Joined: Mon 27 Apr 2015 1:54

My ALS-Like thing

Post by alfon » Sun 3 May 2015 1:16

Hi There,

My name is Alfonso, I am 25 years old. and I have been suffering from something 'ALS-like' since March 2014.

On Sept 2014, I was pretty bad, I could barely walk, (foot drop) and had spascticity, cramps, fascics, atrophy.....
Also had really bad vision problems.

After watching Dr. Martz video, and reading Sarah's book, I started on doxy 200mg/day first for a month, didn't do anything,

then I switched to Doxy 600mg/day, really bad herx and then stabilization for 3-4months , and a little improvement I should say, but atrophy was still going worse.

Then researching a bit more, I changed to Minocicline 400mg/day plus Rifampicine 600mg/day.. and I deteriorated to the point of not being able to write in the computer, get out of bed.... but I held on that treatment, and after 1 - 2 weeks, a magic improvement happened.

My muscles are rebounding really nicely, my legs, forearms, shoulders, hands, fingers,.... it's to relieving what can I say...

so I can think of maybe a co-infection with bartonella ? (I have had bartonella-like rashes since I was 15 years old but I didn't know it until know),

I am back to surfing and hopefully really soon back to skateboarding, I will send some probes to infectolab to see what I am dealing with.

Best regards

andersrn
Posts: 1
Joined: Tue 23 Jun 2015 0:32

Re: My ALS-Like thing

Post by andersrn » Tue 23 Jun 2015 10:34

Dear Alfonso,

So glad you are better :)
I am a 24 year old from Norway who got sick in December 2013. Had very typical lyme symptoms, but started to develop muscle problems in March 2014, and it is still getting worse, but very slowly.
The neurologists here in Norway are still trying to find out what's wrong with me. I do not have ALS, and I do not think the next muscle biopsy I take will give any clear answers..
I also have a doctor in Germany that treats me for borrelia, bartonella and babesia. He diagnosed me with that based on WB-test, dark field microscopy and symptoms that I have.

Been having some improvements, but not with my muscleproblems.
He is treating me with rifampicin, wellvone, azithromycin(pulsing), doxycycline and tinidazole(pulsing) and will soon start up with Bactrim too.

The thing is that, last fall when I was taking minocycline instead of doxycycline, I tried for a couple of weeks to increase the dose from 200 to 300 mg a day, and my muscle problems increased a lot. I was not able to write on the computer with my left hand, had this strange powerless feeling inside my legs, problems with talking and eating food and the fasciculations increased also. So after a couple of weeks I stopped because I got scared, and after a while it went back to normal. I think now, that it might have been some kind of herx.

So after reading your post, I have been thinking of starting on minocycline again, and try out 400mg for some months. My doctor has no experience with that high dose, but says that 400mg should be okey, he just don't know if it has any more effect than 200mg a day.

When you started 600 mg a day with doxy, for how long did you herx before you started to get better? If you had started with minocycline 400 mg from the start, do you think you would have had an improvement after 1-2 weeks, or do you think you would have needed to use it longer?

I am not sure if it is Borrelia, Bartonella or something entirely different that are the reason for my muscle problems, but if it was some kind of auto-immune disease like myasthenia gravis, the doctors would be able to give me a diagnose..

best regards

alfon
Posts: 12
Joined: Mon 27 Apr 2015 1:54

Re: My ALS-Like thing

Post by alfon » Sat 25 Jul 2015 21:59

Hi!

I just wanted to drop by to give a follow-up and found out your response.

Dude, same thing happened to me when I started with minocycline, I had to stop working (I am a programmer) because I couldn't even type in the computer (LEFT HAND ALSO out of curiosity) I requested to be hospitalized here to a LLMD we have in Spain, but yeah, I didn't stop and after 1 - 2 weeks (it was really hard tho), and on 3rd week I eventually started to see light and started to improve a lot.

I know the feeling, been there done that, just don't give it up. I am quite sure myself that both ALS and MS are symptoms of chronic (whatever-infection, say borreliosis, or borrelisois with N-coinfections), I know enough people who have gone through the same path as me to convince me, apart from some studies here and there that points to it, who knows, this is science.

Also, Norway, how scary, that place must be full of ticks, damn!.

Replying to you, I didnt improve a lot with Doxy 600mg, I just 'stabilized' kinda in a period of 4 months, which wasn't bad given how fast I was going downhill. The improvement came with Mino&Rifampcine (followed by a strong rapid deterioration like I said, I was really scared and wanted to abandon it like you.).

Right now I am taking 200mg/day of Minocycline as I found out that I am still improving, and I am scared of taking 400mg for a long time, and since I am right now much healthier...

alfon
Posts: 12
Joined: Mon 27 Apr 2015 1:54

Re: My ALS-Like thing

Post by alfon » Sat 25 Jul 2015 22:10

Something that I read long ago that it's sticked to my mind:

http://www.alsforums.com/forum/do-i-hav ... -lyme.html
Hi,

I don't post too much anymore but of course being that I was diagnosed with Lyme's disease and having an abnormal EMG this thread caught my eye. I wanted to shed a little light on this subject of Lyme and ALS. I've been seeing one of the leading neuro diagnostic neurologists in the country for the last 7months since my crazy story began. You can read back on my posts and updates for my story.

What I learned about ALS and Lyme's disease over the last few months is that in Lyme's disease it can cause a mononeuritis multiplex of which you can google on the internet for the information. It gives a very similar "dirty" EMG and can progress in the same aspect as ALS being that it can cause total paralysis and death.

There are two distinct differentials in deciding on a diagnosis of multiplex and ALS and even then the lines are very blurry when handing out the diagnosis of one or the other. Dr. G told me that the reason she would not be diagnosing me with ALS even though I had denervation, fibs, and giant mups..all that jazz..is bc for one I had a positive Lyme titer that was very high and also a high EBV titer. Secondly, she said I did not show any denervation in my paraspinal muscles at all.

I guess what I am trying to say in summary is that Lyme's does not cause a dirty emg but if it has caused a mononeuritis multiplex that will show dirty. If you are responding to Rocephin, you would not be seeing instant improvement in weakness or cramps etc that has to do with the muscle denervation. However, you would see a change in your speech possibly, in your reflexes, basically anything that would be an UMN symptom bc Lyme's invades the central nervous system and instant improvement due to treatment would be feasible. You wont see any instant symptom relief due to LMN damage only bc when the multiplex sets in, it is there and will take at least 6 months or more from the eradication of the Lyme's to begin to heal.

All in all, if you have Lyme's and a multiplex then you should start seeing improvements in your UMN stuff and then in 6 or more months you should have another EMG to check for active denervation in the affected areas. I must add that not all people recover from a multiplex but most do within a year or so. I would say a year from now if you still have active denervation and you see any progression in UMN symptoms ALS is probably the correct but if you dont then you had a multiplex of some sort.

Hope this helps..its taken me so many questions and research to get where I understand this Lyme/ALS question but at this point there is no research that links Lyme to causing ALS. Lastly, I want to make it clear that Rocephin is used to kill Lyme bacteria and is used in ALS trials because of its ability to stimulate natural glutamate blockers in your body which is theorized to cause oxidative stress which kills motor neurons. This is also why trials are being done with high doses of glutathione bc of its ability to detoxify as to alleviate oxidative stress.

If you have any questions..I have a wealth of knowledge on this subject. I'm an open book and a dirty fibber

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: My ALS-Like thing

Post by ChronicLyme19 » Mon 27 Jul 2015 1:36

Just curious, alfon, since you were treated with rifampin, did you notice any weird rashes like this:
http://blog.thesmithlife.com/?p=539
This comes from a blog from someone who was first diagnosed with MS, but later they had Lyme/bartonella.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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