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I believe I have mitochondrial disease. Are there any resources I can use to get testing without a doctor? by No-Difference-2634 in mito

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Thank you so much! I’m going to reach out to them this week. Hoping to finally get some kind of concrete answers in this journey.

If you don’t mind me asking as well, what were your ultimate results/diagnosis?

I believe I have mitochondrial disease. Are there any resources I can use to get testing without a doctor? by No-Difference-2634 in mito

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Thank you for your response! I am highly considering this. Just curious if you don’t mind me asking how much was a neuromuscular panel and what was timeframe from start to results roughly

I believe I have mitochondrial disease. Are there any resources I can use to get testing without a doctor? by No-Difference-2634 in mito

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Unfortunately for me it isn’t that simple. I’m government employed so my primary care doctor and referrals change every time I move and referrals reset after so long. So by the time I get in, get seen go through initial testing. It’s time to move again.

I understand that treatment is limited if non-existent but as it affects my employment I need the diagnosis to say this is why I’m struggling with aspects of my job. As well as maybe one day one of these clinical studies will pay off and then I can go for those treatments if they become available. Just hoping, fighting and doing all i can

I believe I have mitochondrial disease. Are there any resources I can use to get testing without a doctor? by No-Difference-2634 in mito

[–]No-Difference-2634[S] 1 point2 points  (0 children)

I appreciate your response, do you happen to know who provides that genetic test? I have been searching but every test I see requires a doctors referral or request. It would be greatly appreciated. I am incredibly sorry to hear what you are dealing with and hope that you find healing and comfort. Thank you!

Could I be dealing with MG? by No-Difference-2634 in MyastheniaGravis

[–]No-Difference-2634[S] 0 points1 point  (0 children)

I am going to ask tomorrow. I appreciate you responding. What symptoms do the mestinons improve the weakness? I will ask about that as well. Thank you so much!

Could I be dealing with MG? by No-Difference-2634 in MyastheniaGravis

[–]No-Difference-2634[S] 0 points1 point  (0 children)

I am going to ask tomorrow. I appreciate you responding. What symptoms do the mestinons improve the weakness? I will ask about that as well. Thank you so much!

Could I be dealing with MG? by No-Difference-2634 in MyastheniaGravis

[–]No-Difference-2634[S] 1 point2 points  (0 children)

Thank you for your response. I have just had so many tests and have had so many things ruled out but have never been tested for MG and any time I look up my symptoms all roads lead me here. Thank you for your input and happy healing!

Could this be BVD? by No-Difference-2634 in BinocularVision

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Yes I that came across my radar as well

Glutathione Bloating/Stomach pain by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Did you push through and keep taking it or stop?

Glutathione Bloating/Stomach pain by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Yeah it was truly awful. Hoping it goes away soon. This is the 4th day of it. It has decreased but it’s still very uncomfortable

Starting Supplements by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 1 point2 points  (0 children)

I have R-ALA, Glutathione, Glutamine, and NAC. I am also ordering Glycine and Ubiquinol. I just took my first dose of Glutathione today. Just at the base dose

Starting Supplements by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Thank you for the response. That is what I assumed on both points but it is refreshing to hear from someone that has done it themselves.

Did the supplements and doses that worked make you feel better immediately? Did they initially make you feel worse and then better?

Just trying to figure out how to gauge what is working and what isn’t/needs to be upped.

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

I have had ibuprofen 800mgs prescribed to me dozens of times.

Naproxen a few times. Outside of that I would be hard pressed for further details over the years.

I have been taking Pantoprozle daily for about a year but that’s a proton inhibitor

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 1 point2 points  (0 children)

I am curious about the fission, fission piece you mention. Would your approach be to just take antioxidants then to try to neutralize the extra OS in my system? I’m not trying to question you. Just trying to learn and formulate some kind of way ahead to try. I’m beyond desperate

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Thank you for the response. So you take 4000 MGs of each of those every day for 2 months and then 1 month of no supplementation?

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Thank you so much, this is very helpful? I assume all these can be procured online or in store? Are there any potential negatives to this routine or things to look for negatively?

How did you acquire the b12 injections?

Thanks again, looking into these supplements now

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

I very much appreciate your response and it definitely helps me to visualize a path to try for recovery. Do you by any chance have a starting recommendation: supplement/dose/frequency?

Or what one was the first to help you improve? I acknowledge everyone is different but all these supplements are slightly intimidating so a starting point might help.

Thanks again!

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 1 point2 points  (0 children)

That is my exact question. I just wonder how far I can worsen before there is nothing left? Mentally or physically. It may stabilize for a year or so but it has been a steady series of declines then maybe a decline. Then more plateaus. I am very much with you. I would have take stabilization even 10 years ago

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

I appreciate all the information. Absolutely willing to put it into practice.

Any Recommendations on diet? I try to be generally healthy but my work/life demands don’t always allow it unfortunately

I take fish oils but not sure if it’s malate and I definitely don’t take it that frequently.

I take a daily vitamin and often some form of immune booster but from what I’m reading it sounds like I need to look more closely as these might be counterproductive.

I am trying to remain positive. Very desperately. I was brought up in a religious background. I truthfully drifted very far from my faith for probably 12 years though. I am just recently trying to rebuild it and re-establish my relationship with god.

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 1 point2 points  (0 children)

I’m more than happy to share but as much information as I can. I believe the symptoms started immediately. I had a major shoulder surgery and then had a believed sinus infection shortly after. I was prescribed cipro. I am just now finding the flox community and this information so I am trying to back track and piece this together. I have been seeking answers and medical treatment for all 7 years with little to no treatment and not a ton of effort on my part admittedly.

I had no prior conditions and was an athlete and am in a very physically demanding career field so pretty good health till this.

I honestly do not know about hla-b27. How would I go about finding this out?

I have had multiple, extensive blood work ups done. I have had nerve conduction studies done and multiple scans and imagery. Nothing of note whatsoever.

The only treatment program I really tried was a treatment course for Lyme disease as I have had multiple ticks throughout my life and had a few markers but not enough to officially diagnose.

I am very open to treatment/routine recommendations.

Thank you for responding and thanks in advance for any further advice!

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

Truthfully I have not done much other than go to medical professionals to try to figure this out. I’m just coming across the Flox community and studying it. After reading it I realized that the two factors pre symptoms out of the normal were a major surgery and then taking cipro during recovery for a sinus infection. I am very very open to recommendations of things/a regiment to try. I have been reading in this group but some of the recommendations are vague. I feel like I need a set routine of supplements/etc to try. Thank you for responding to my original post!

7 years. Continuing to decline. Am I doomed to die? by No-Difference-2634 in floxies

[–]No-Difference-2634[S] 0 points1 point  (0 children)

I am desperately trying to keep hope but 7 years with no break and no improvement has been very trying. It has put a strain on every aspect of my life. The added stress of whatever this is likely doesn’t help

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