My last chance of someone listening. My depression and ME have left me alone.

I think I should make up little business cards that say "I really don't have the energy to convince you that I'm not "just tired and depressed", so go watch this movie! It indeed is a lonely, isolated life. Knowing that there are others out there rowing a similarly sinking boat, might be enough to keep me from giving up and drowning. There is literally no one left in my "tribe" so I'll keep turning to the virtual friends in cyberspace. Good luck with the new meds.  My gut couldn't tolerate LDN but I hope it helps you.  If you're feeling good enough to "do", how do you put your head into the right place as well? Maybe severe depression isn't common with other MEers?

Love your idea about making up business cards that say "I don't have the energy to convince your that I'm not just tired and depressed," so just go watch the documentary! Great idea, by the way. 

I agree with the other comment that the combinations of family troubles and CFS is not a good one. As we all know, stress makes our symptoms far worse than the already are! I wish you could find a way for your loved ones to understand what you are going through. Perhaps you could get them to watch the documentary or some other videos where professionals speak about CFS/ME. 

Very curious why you said that your gut could not tolerate LDN. Do you know anything about it? I just returned from my doctor's appointment, and he wants me to continue on the antivirals for another month before trying LDN. He says he's seen some improve, but he's also seen some get worse on it. Thanks, KPD

Thanks for the positive response. My experience with LDN through my immunologist was in hindsight, probably from starting at too high a dose (3.5?) I immediately got migraine headaches lasting days and developed "spontaneous bowel reflex". Use your imagination on the last result. Because I'm on so many meds for so many conditions (as well as a spinal stimulator implant) it's difficult to determine where reactions originate without the eliminate and reintroduce game. I actually am listening to an audio book "How To Be Sick", which because of the title I was hesitant to begin. Man was I wrong! There is some very powerful stuff she is passing on in the book--and from a bed-bound patient/author. I highly recommend it.

My situation is very similar to yours. I'm housebound, except for doctor appointments. Friends act like I don't exist anymore. Even when I email them and say that's the only way I can connect right now, they don't respond. I had a close friendship with someone for over 50 years, who is not in my life anymore. Basically, my husband is my support system, which I'm sure can be very hard on him. But at least I have him, and I do everything possible to take care of myself and not try to restrict his life. I saw a screening of "Unrest," with Jen Brea and her husband Omar doing a Q&A after the screening. It was very powerful being in a movie theater (I had to push to get out for that), with everyone in the theater impacted by ME/CFS. I, like others here, am going to try LDN. By the way, I think you started way too high on your dosage, from what I've read. Some say to start as low as .25 mg. I've read that target dosage for LDN should be 4.5 mg, so you effectively started close to the target dosage. We tend to be very sensitive to meds, so starting low and going slow is the rule of the day. I also make sure to only start on one med at a time, so I know what's going on. Otherwise, it just gets too confusing. Having to deal with ME/CFS is just a lousy experience all the way around. 

Interesting, MommaT! My infectious disease doctor was not real positive about LDN, either. He said many of his patients who had tried it developed stomach issues, but he was willing to let me try it if I really wanted to. Maybe you started at too high of a does, though, because everyone I know, started at 1.5 mg and worked up to 3.5 but after a few weeks.

I'll have to look into the audio book you are listening to. It sounds like ti could be inspirational. Thanks for sharing. KPD :-)

Hi Jackie, sorry to jump into your conversation with MommaT, but I noticed you mentioned that you are going to try LDN.

Can I ask you who will be prescribing it to you, that is what kind of a doctor? And, I know you watched Jen Brea's documentary. I still can't bring myself to watching it because I'm afraid it will make me even more depressed right now. I was wondering if she mentioned trying LDN, and if so, did she get any relief from it? All of this is such a bummer and a lousy experience all the way around, I agree!

Yesterday, I got the lab results from my Infectious disease doctor showing inflammation and an underlying bacteria/viral infection. When I compared the results to those that my primary physician did, they were slightly different but I noticed that the range of normal is different in both labs. All this is crazy! After suffering with CFS for 25 years, I don't know what to think anymore!

I just want to feel better and some days I do, but other days this disease gets me so so down! Hope you are having a good day. Please let me know how LDN works for you. I'm eager to try it, and my doc says he is willing to prescribe it if I don't feel better by next month. Thanks, KPD

Working on it! Conference call with my therapist today helped get some funk out that had built up. I appreciate your care?