Order of recovery from multiple symptoms

Many people diagnosed with ALS actually have lyme disease. Good for you for continuing to seek answers! As you probably now know, the controversy surrounding lyme disease and the treatment scares many drs. off. I don't know why drs. try to pursued patients against treatment though, it's ridiculous. I've had a couple of drs. look at me as if they had seen a ghost when I mentioned LD; they don't want anything to do with it.

So, you are seeing a LLMD (lyme literate MD)? Is he/she ILADS trained?

The fact that you are ALREADY seeing improvement in some symptoms 6 weeks in is incredible. For most people with LD that have gone untreated for a while, it takes a long time to see improvement, many months, and sometimes a year +.

The length of time to improve and the way in which various symptoms improve varies significantly from one person to another and involves a lot of factors. And sometimes, due to herxing, a person will have symptoms show up that they rarely or never have had. My LLMD said that symptoms slowly disappear over time and that the fatigue and sometimes cognitive problems are typically the last to resolve.

For me, the nausea and vomiting resolved quickly after beginning treatment for a co-infection of lyme called bartonella. The muscle weakness and pain waxes and wanes significantly for me and none of the neurological symptoms have gone away completely yet, although some of them come and go instead of being constant. I'm 7 months into treatment.

Neal, my husband was diagnosed with ALS last summer. I pushed really hard for him to see that it could be Lyme. His company doctor sent for Igenex testing and sure enough he had six positive bands on the report. He could have coinfections too. His symptoms are muscle atrophy, weight loss, finger deformity, and loss of motor function with hands and arms. He has never experienced many of the symptoms such as pain so it took him awhile to really believe it was possible to have Lyme. His doctor wants to start him on Doxycycline, but we will look into a LLMD to treat him. He has been rifing, using recommended herbs for lyme, and detoxing. Since you were diagnosed with ALS, I would love it if you can post how you are doing and the treatment you are using. I will be doing the same.

I apologize for this terrible delay. My post notification system is apparently not working right.

I am now six months into my antibiotic treatment. I have had improvements in breathing, swallowing, fatigue, and mental fog. I have lost some more weight and some more strength — some more body mass. However, having said that, I have not had the steady and relentless decline that is associated with ALS.

An example: I reached the point where I lost the ability to move my toes. I need to mix in an additional subject — that of herxing. It was during a herx that I lost this toe function. Once I stop the antibiotic for a time the function returned. I then went back on the antibiotic at the relatively high dose and it went away again. I have interrupted it twice with the same results. I am now adjusting the dose to avoid that.

That, along with a few other things, tell me that I do not have the steady and irreversible decline associated with ALS. Although mine is a difficult existence, I continue with my genuine feeling of optimism that I will beat this. I am six months into what I'm told could be 18 to 36 months of treatment.

I hope this answers your question, and again I apologize for my unforgivable delay.

LOL! Not getting notifications sure isn't an unforgiveable delay in my book! Just a goof up, and sometimes my computer "helps" too - by putting my notifications in my "spam" file! I'm suspecting it the cats walking on my keyboard as the reason!

Congratulations on your improvements!!! How wonderful!! Are you detoxing? That may help with some of those issues that you are having while on the abx, and please be sure you are taking at least 50,000 units of a good probiotic to keep the Candida at bay.