Treatment with the AIDS cocktail

[ElizabethG]

Hello . I have ALS and I have had it for 27 years. I am still doing well. I am able to stand, transfer, walk my dog, cook, knit and generally enjoy life. I was diagnosed in 1997 ( I was 45 years old). My progression with the disease was the usual and I was given a prognosis of 3-5 years.

In 2000 I read an anecdotal report in the Neurology Journal -April 2000 about an AIDS patient who had developed ALS and after being treated with the AIDS cocktail, her ALS symptoms resolved. I am a nurse and I do understand retroviruses and although I didn't have AIDS, nor was I HIV positive I wanted to try this cocktail. With my insistence, my doctor wrote the prescription and I started the AIDS cocktail. After only one week I felt stronger,....my voice became stronger and the weakness in my left hand -which couldn't safely hold a coffee cup- lessened and my grip became stronger. My increased leg strength and grip strength was measured clinically and an EMG was repeated after one year on these drugs. The EMG showed marked improvement. this was all well documented in my medical records.

I continued taking these drugs for 5 years and then I didn't feel they were helping any more..I felt I had stabilized so I stopped taking them. I have been in a wheelchair since 2005 ( at that time, I preferred the wheelchair as I could keep up with the world more easily and faster than with a walker). So today I am about the same...my back is weaker and I am presuming it's from being in a wheelchair for so many years and ...the fact that I am now 70 years old.

I am so grateful for the time I have been given and I believe without question that my longevity is due to the antiretroviral treatment. There are other retroviruses - aside from the AIDS and HIV - and as a nurse working for 18 years in the ER I may have contracted a virus through my contact with patients or it could be a retrovirus in my genetic make-up.

All cases of ALS are unique and present with different symptoms. I do not promote the AIDs cocktail for ALS patients but I do believe the ALS community deserves to know about my success and my experience with the three medications that made up this cocktail. The cost was covered by a drug plan which was very fortunate and I had no symptoms at the time I was taking it. I do have neuropathy in my lower legs which I believe is due to the cocktail.

The research community have known of the correlation between ALS and retroviruses for over 25 years and yet it is only now that are looking at it seriously. No one from the medical or research community will address my success with the antiretroviral even though it was clinically measured and documented. I don't get it. I am open to being studied. I haven't hounded anyone ...I just don't get it.

So I will never likely understand the resistance of the research community and the medical community in acknowledging story/experience. some may be fearful of giving false hope yet is it truly false hope when there is a possibility that it may help some...

When you've been told you're going to die any news of a successful outcome with ALS is welcome news.

(Also today they are using antiretrovirals in studies but the drugs used are not the same. My belief is - as in cooking...if you change the recipe, you get a different outcome.

I hope my story inspires.
Take care everyone.
Elizabeth

 

[lgelb]

Hi, Elizabeth, your case has been discussed here before -- appreciate your first-person contribution. The viral hypotheses you describe continue as an active area of research. A small trial of Tregs + IL-2 showed some promise and I would imagine more work is planned, but likely not for all immunological profiles.

And since viral assays in 1997 were not as robust as today's, it is certainly possible that you had a viral load at that time that would qualify for antiviral treatment today.

A quick PubMed search of CD4+ALS shows 151 publications to date. The development of MN-166 (ibudilast) in ALS, for which an October update is forthcoming at NEALS, is based on related hypotheses, as is the current follow-on trial of Triumeq, a modern AIDS triple therapy. So I don't think you need to be concerned that ALS research is ignoring virology.

I moved your post so both CALS and PALS could comment and linked the closest (2001) case report I could find to your description, though as you noted HIV was confirmed in that patient, and the few cases published since have been in the same instance (HIV+ALS syndrome).

 

[Nikki J]

Did you contact Dr Bedlack? N=1 reversals are his interest

 

[JAM]

I am so happy for you, this disease did not rob you of life! So many questions…what symptoms did you have when you started the cocktail? Was your ALS diagnosis a sporadic type? What was your ALS symptom history before diagnosis? How were you able to convince your doctor? Just amazing blessings to more living for you.

 

[Marieb425]

Elizabeth, thanks so much for posting this! My 42 year old husband is 2 years in with advanced bulbar onset and respiratory involvement that qualifies him for hospice. But I wonder if it might be worth asking his neurologist about this … it doesn’t hurt at this point.

 

[ElizabethG]

I am just another ALS patient however because of my profession as an RN I am able to strongly advocate for myself. I know the health care system and I know that my knowledge gives me an advantage. I don't like to discuss my history I just want others to know this has been a positive treatment for me...so that they can advocate for themselves.

 

[Loulou22]

When you say the AIDS cocktail are you referring to Triumeq? I’ve been taking it since February, not sure how much it helps me. I’m still progressing, albeit slowly ( still too quick for me)..

 

[JAM]

Lou Lou - did you see a slow down when you started? Prayers that you get similar results as Elizabeth

 

[Loulou22]

I’ve continued to progress similarly, although at my last appointment with my neurologist, she felt not much had changed at all. I’m limb onset, diagnosed almost 2 years ago at 41. My progress has been ‘unusual’ (while acknowledging that there are no two cases the same) in that it doesn’t seem to have started in 1 limb, or upper or lower, rather it progresses in 1 or 2 spots, then seems to stabilise for a while, while another spot or 2 progresses, then stabilises for a short time, and so on. So while earlier this year my left shoulder was stronger than the right and my right hand was stronger, now my right shoulder is the better of the 2 and I favour my left hand! The meds don’t seem to have affected that. And I’ve not noticed any improvements. But I will stick with it, as my neurologist thinks it’s worth it

 

[JAM]

What exactly is the drug? Is it a drug used for HIV? I am happy to hear you are progressing slowly. I wouldn’t change a thing since that’s the case!! My husband first felt finger weakness (unable to button cuff link with non dominant hand) in beginning of May. Not much has changed for him but he was diagnosed almost a week ago, we are reeling with so much info but I want to be sooner rather than later with anything that may slow progress once it starts . Please keep me updated. My thoughts are with you.

 

[JAM]

I’m not sure your question about the aids cocktail was ever answered / the cocktail she took is;
lamivudine 150 mg bid, zidovudine 300 mg bid, nelfinavir 750 mg tid).

She said the new cocktail for hiv is different than the one back when she took it, but the one she took is what she listed.
She has had ALS for 27 years. It’s an amazing story.

 

[JAM]

@igelb you mentioned Elizabeth’s case was mentioned in this forum before but thanked her for her first hand account- how was her case known? I keep coming back to this viral hypothesis & it certainly seems like many of the current research is in that direction. I cant believe the ALS community would not want to meet her etc. she says she is open to being studied. my main question is how was this forum aware of her case in the past? Thank you in advance.

 

[lgelb]

From past posts from members.

 

[Leticiaaa555]

Hi Elizabeth, so happy to hear your success story!
My fiancé was diagnosed with limb onset ALS on May/24, he’s a fast progressor (already on a rollator, right hand fully paralyzed) and only 40.
Do you mind if I ask you if you have the herpes simplex virus? Because he does and I remember once reading HIV and herpes simplex are correlated, and herpes simplex is also correlated with ALS.
Maybe that’s the reason why the cocktail works for some people, don’t know.
Thank you and keep fighting the good fight.

 

[JAM]

Hi Leticia,
Could he try the cocktail that worked for Elizabeth?? Praying for a slow down in his progression. Is he taking anything? My husband was diagnosed in September with first function failure being inability to button cuff beginning of May. No changes since then and we are looking to get on Budilast, but may consider this cocktail if Budilast doesn’t work for him. Maybe he needs to be tested for viral issues? I know he doesn’t have HIV but there are others I believe??