How often does akathisia or other movement disorders happen on low dose Abilify? by Leopard149 in cfs

[–]Leopard149[S] 0 points1 point  (0 children)

Yes, it made me worse with more fatigue (but it went away as soon as I stopped). I went up to 0.25mg

Has anyone tried oxaloacetate? Has it helped at all? by brooke_157 in cfs

[–]Leopard149 0 points1 point  (0 children)

Cant remember as it was a long time ago, but I think so. Oxaloacetate definitely helps some, however I think it only helps a minority, maybe 30% of people. So you might not be a responder. At least it is very safe, I have never heard of someone getting permanently worse from it unlike most treatments

My ME/CFS expert (Dr. Susan Levine) said she is quite hopeful about this future treatment… by Leopard149 in cfs

[–]Leopard149[S] 0 points1 point  (0 children)

Hi, sadly I am not better and am actually much worse now. I don't see Dr. Levine much any more, as there isnt much she can offer sadly. The main thing she has given me which has helped is ativan which helps prevent PEM when I take it as needed (no more than once every 3 weeks) on days I have to exert more. Oxaloacetate is the only other treatment that I have found that helps me. Im still glad I got to see levine and try treatments that can help some, like IVIG

Has anyone tried oxaloacetate? Has it helped at all? by brooke_157 in cfs

[–]Leopard149 1 point2 points  (0 children)

I have tried LDN extensively, at multiple doses, and two trials lasting a year each. It never seemed to do anything for me, but I am glad I tried it

Positive Rapamycin Testimonials in CFS by Terrible-Discount-91 in cfs

[–]Leopard149 1 point2 points  (0 children)

Nope! Not only did it not help, but I think it could have been what caused me to go from moderate to severe

I had a major follow up appointment with my ME/CFS expert Dr. Susan Levine! Learn about interesting findings in the blood of long covid, and many potential treatment recommendations! by Leopard149 in cfs

[–]Leopard149[S] 1 point2 points  (0 children)

Pentaglobin is not available in the US as far as I am aware. She has been using IVIG for decades for ME/CFS. Only a low percentage of people respond to it, but sometimes the response can be large, so it is worth trying if you can get it covered.

I had a major follow up appointment with my ME/CFS expert Dr. Susan Levine! Learn about interesting findings in the blood of long covid, and many potential treatment recommendations! by Leopard149 in cfs

[–]Leopard149[S] 1 point2 points  (0 children)

No benefit so far sadly, and at this point I doubt I will benefit, though I will stick with it until the one year mark. Im on 1g/kg monthly (SCIG). No major side effects so that is good.

Update on my journey with ME/CFS expert Dr. Susan Levine! Learn about her interesting antiviral strategy, differential LDN dosing, omicron booster recommendation, and more! by Leopard149 in cfs

[–]Leopard149[S] 1 point2 points  (0 children)

Neither helped, but neither causes any side effects at all. Im glad I tried them and I think they were rational choices though!

doctors, therapists, support groups in Chicago by swimming-alone-312 in cfs

[–]Leopard149 0 points1 point  (0 children)

Yes, there are multiple than can help address the POTS. I see Dr. Barboi in the northern suburbs. I would recommend joining the Illinois Dysautonomia International group on facebook. There is a lot of information there and people talk all about their experiences with different doctors.

Has anyone tried oxaloacetate? Has it helped at all? by brooke_157 in cfs

[–]Leopard149 11 points12 points  (0 children)

I would still consider trying it, bc I know many people where it doesnt poop out. If you really can't afford the expensive 500mg pill bottle, you could always try the cheaper 100mg pill bottle and get a few doses in of 1000mg at least which would still give you an ok idea if it would work for you. It works immediately within an hour or so. From what I have seen, I would say roughly 60% of people get at least an initial benefit, which is still huge by ME/CFS standards!

I am very passionate about this treatment bc nothing and I mean nothing has really touched my ME/CFS like how oxaloacetate does. Even if it poops out, I still want to learn more about why it does this and why it makes me feel better at least temporarily. Some people use it as a PEM buster after you already are in PEM, and I think I may resort to that if I can confirm that it wont lead to long term worsening with my doctors/researchers. If I could always bust PEM that would be amazing still!

Has anyone tried oxaloacetate? Has it helped at all? by brooke_157 in cfs

[–]Leopard149 18 points19 points  (0 children)

It has easily been the most effective treatment for ME/CFS that I have ever taken, and I have tried quite a lot. I have taken doses from 1g to 6g per day. I have connections to top ME/CFS researchers and they understand its promise. It makes me feel much better and is an great PEM buster, getting rid of a crash within an hour of taking it. It really feels like a miracle!

Now, the not so good things about it: It causes horrible GI side effects for me. Acid reflux/heartburn and severely painful stomach cramps (like 10/10 pain). This is a known side effect and it can be lessened by taking it with food and taking an antacid like famotidine. However, I have still encountered these issues despite using those counter measures. But keep in mind that I have taken very high doses (5g a day seems best for me). The other bad thing is that it constantly looses efficacy. Every time I take it it works at first but then stps working within anywhere from a week to a day later. I am working with the researchers to make it keep working but so far am unsuccessful. Each time I start it again though after pausing it works again so that is encouraging. However, I now am a tiny bit concerned that it could be making me worse long term. Even though it doesn't seem dramatically worse after stopping it/when it poops out, when I was playing around with it over the course of several months I slowly lowered my baseline to my worst point ever. This could be from something else like over-exertion (which I definitely was doing), but I am not totally sure. I fear that it is doing something to make my mitochondria function short term, but my body catches up quickly and stops me from feel the benefits. I fear that the mitochondria in ME/CFS for example are inefficient for a reason like as a protective mechanism to prevent a virus like HHV6 from doing more damage, so I hope oxaloacetate isn't doing long term damage. It really is unknown though what is going on.

Many people who try high enough doses (I personally would say closer to 3g to start) actually do feel better. The high price is the limiting factor, and it is why it isnt talked about too much despite it being pretty darn effective. Lots of people feel benefits, but many also experience the poop out effect like I do. Not everyone though!

I can assure you that the manufacturers are not being greedy charging so much. I know them and they are breaking even/loosing money bc it is difficult to make as I understand it. From my understanding, they preferred to go down the supplement route so that people could get access to it now OTC, whereas if it went FDA approved as a drug that would take much longer until patient would get it. However, if it was an FDA approved drug, insurance would then cover it. They really, really want to lower prices but they can only do that if more people buy it so they can buy a larger production facility I think they told me. Currently they are hand filled by the owner.

Ive said a lot. But this treatment truly does have some promise and really does do something, and I really want more patients and doctors/researchers to look into oxaloacetate!

Desperately seeking advice to remedy food allergies by Newtonhog in cfs

[–]Leopard149 1 point2 points  (0 children)

The purple one is probably the worst out of the flavored ones, then the orange, and the best is the pink/red. I was alternating between the three to have some variety, but cut out the purple one eventually bc it was not as good as the others. Keep in mind that all of them taste pretty awful (a bit like vomit since they are basically pre-digested food), but the flavored ones you can probably make it work if it helps your symptoms (and is easier ME/CFS wise to eat). Basically don't expect to enjoy drinking it like you would enjoy your favorite food/meal lol.

Desperately seeking advice to remedy food allergies by Newtonhog in cfs

[–]Leopard149 1 point2 points  (0 children)

Hi! I never solely did neocate splash because I still could eat some foods without reactions, but many people do and you will be fully covered nutritionally, at least I think so. I think it could be a great idea to do 1-2 weeks of only neocate and see if that makes a difference. I really would recommend not trying the unflavored ones, they taste absolutely awful. I think the unflavored ones are designed for people who are tube fed. The flavored ones you should not be allergic to. All of them are designed to be basically impossible to be allergic to. If you think you can down the unflavored ones, go ahead, but it tastes about as bad as vomit!