Thought I had recovered- now what

[AlwaysTired]

Have you had any of the usual blood tests, and tried any of the usual treatments for ME/CFS?

If by usual blood tests you mean EBV, CMV, HHV 6 etc then yes. When I first got sick I was positive for mono, and the 3 viruses just listed. I got tested for EBV again a year later and no virus was detected in my blood. I got blood drawn a week ago to test for it and other viruses again, but haven't gotten results yet.

I also have them check for coccidioidomycosis a few times a year when it seems I'm having some symptoms (they're usually mild) cause I had Valley Fever one year before mono/CFS. Those have come back negative for the last few years.

I have tried on a number of occasions to have the saliva test for cortisol but have been ordered the wrong one because the doctor (endocrinologist) didn't know better, got an order from my GP when I lived out of state for the right one but was too severely fatigued then to go to the lab 4 times a day, especially early morning. Waited months to see an endocrinoogist here (thank you, Medicaid), sat in traffic for an hour to get there only to have her flat out deny such a test even exists. I was too spent and disenchanted to try to see another endocrinologist, so haven't pursued that any further. I insisted on her testing estrogen levels, which she wouldn't do since my periods were normal (I insisted but she was very rude and uncooperative.

The doctor that SSD had examine me said he didn't think I had CFS but pvf, despite the fact that the timeline of my illness was way past PVF at that that point. He agreed but said I needed to have a CFS panel first and foremost. I had no idea what that was, and knew I was going to be turned down because of his conclusions so didn't ask. In retrospect I wish I had.

As for treatment I have tried so many supplements that others here have had success with, I did the methylation protocol, tried stuff recommended by CFS docs like Myhill and others, went to a naturopath stem cell therapy, who sent me home with a bunch of other supplements and B12 and methionine(?) shots to self administer, tried acupuncture (early on), essiac tea, cut all sugar and redined carbs out of my diet, and none of these did anything for me, except possibly stem cells but that's unclear since it takes 9 months to begin to see effects supposedly, and I began to improve in 4 or 5, shortly after moving to Phoenix. Oh yeah, I also tried low dose naltrexone.

I don't have the money to go see these CFS specialists like Enlander, and it seems their success rate is not much better than just doing your own research and self treating.

The only things I can say for sure that have helped are rest, time and moving to Phoenix.

 

[AlwaysTired]

I'm a special education teacher. Right now I teach Sunday school classes for students with special needs, which is exhausting. But for the rest of the week I do administrative work for my organization, plan curricula, and do all sorts of interesting projects from bed (including writing two books). It's hard on days when my brain isn't working very well, or my fingers are too tired to type, but I feel fortunate that I'm still able to do something I enjoy.

I don't know if full and permanent recovery is possible right now (thankfully medical science moves forward each day, albeit slowly, so hopefully it will eventually be possible). But I do know that it is possible to live a god and fulfilling life within the limits of this illness.

I think if I could do that much and still be able to take care of myself, socialize and go for hikes now and then I'd be at least somewhat fulfilled. Needing to have someone else do the grocery shopping, cooking, dishes, being bed or house bound most days and not being able to do any sort of work...well that's a different story

 

[lafarfelue]

Change is the only constant.

Eternal Plants CBD Oil

Fark. Two hundred and fifty bucks. Man, I was talking about walk-in dispensaries... it's a positive move, but I've heard that getting Aussie Drs to prescribe it has been a challenge for some people. I also sorta doubt 'little ol'CFS' would be considered an appropriate use of the prescription by the powers that be. (Let me know if anyone's experienced otherwise and who your Dr is, please!)

 

[IThinkImTurningJapanese]

Two hundred and fifty bucks.

That's a very strong concentration.

 

[Diwi9]

@AlwaysTired - Thank you for sharing your experience. I too seem to have a relapsing-remitting form of this illness. I've just had three weeks of solid energy with a decrease in POTS symptoms, but am starting to short circuit again. I don't get the anxiety you discuss, rather my nervous system feels crazily energized at times and I know it's a trap, because if I go with it...I will crash.

I'm sorry you feel a loss of hope right now, I understand the feeling of defeat...just when you think your body and health can be relied upon, it's pulled out from under you. I think the one thing folks like us have to contribute to this disease is knowing that recovery can be like a switch...but like you, I just wish we knew how to manage the switch.

 

[maybe some day]

I began getting better (from CFS) when I moved to Phoenix in August, and continued to improve in the coming months. By November my CFS began being replaced by anxiety, as my nervous system suddenly came back to life. The anxiety became unbearably severe as the fatigue disappeared, and I had so much nervous energy that I could only discharge it by hard exercise and activity. There were days I would work out hard at the gym then come home and labor in the garden under the hot sun, and still be ok a day or two later (and no fatigue, just normal tiredness if anything the following day).

I went on hikes, sometimes upwards of 3 hours, running on the trails for most of the time to get the ridiculous amount of nervous energy out and relax.

So, I was sure that the CFS was gone and done with, as I was now at the complete opposite of the spectrum. I did expect that I would end up with less superhuman energy as the anxiety got under control, which it finally has.

That brings me to the past week. I began volunteering at an animal shelter at the beginning on February, and was ok energy wise with that. Then last Friday, after a moderate work out (wasn't needing to push myself as hard since the nervous energy wasn't as severe) I spent 2.5 hours at the shelter and had to leave because I began to crash. It was very busy and I was running around doing a lot, including carrying large puppies back and forth.

Spent the rest of that day mostly in bed, was in bed all day the next day (last Saturday, exactly a week ago), then able to sit on couch and watch tv and such by Sunday.

By Monday I felt OK again but the anxiety was back, so I went for a strenuous hike that was very rocky and all uphill (well in one direction. Was downhill and hard on knees with lots of loose small gravel that made the way down nearly as challenging)

I've managed to do a few errands since (this past week) but have begun feeling a level of fatigue I haven't experienced for about a year now. I struggle just to sit on the couch and watch tv or even write in my journal. I was making plans to work again, but now that this has happened I'm worried and feeling like that simply won't be possible.

Obviously I triggered a relapse, but what I am questioning is whether this past 7 days activity (most notably the hike) was too much too soon, or if it's going to be too much ever. Is it possible this is just a setback or is it more likely that CFS is never really going away and I will have to limit my activities forever. That I'll never be able to return to work, even if it's part time and sedentary?

I know no one can tell me for sure, so I'm just looking for probabilities here, and experiences of others.

Although the trails I was running on were much more level than the one I hiked on Monday (which I walked the entire way...nearly impossible to run it) I thought it was the same level of activity.

Now I don't know what to do moving forward, especially w/r/t working again...

Thats quite an improvment! Sorry for your downard spin. Honestly, there is nothing that make sense with this illness..nothing. You think you get a grasp on it, then poof..all that vanishes in thin air. Ive been ill for a very, very long time. Was doing pretty well, 80% of normal functioning, rested, took care of myself. Unfortuneatly the last 2 years I have crashed and very chronic. Havent beem this bad since the first 5 years of being sick. This is CFS/ME.... it lurks, hides, strikes at any time, any severity. Take care of how much you do, and hopefully you can get back on your feet as before. Give it time.

 

[Tammy]

If by usual blood tests you mean EBV, CMV, HHV 6 etc then yes. When I first got sick I was positive for mono, and the 3 viruses just listed. I got tested for EBV again a year later and no virus was detected in my blood.

This does not mean the virus is still not in your system...........it's just not floating around in your bloodstream as in the initial stages when it can be picked up by labs. EBV can attack and make a home in organs such as liver and spleen and even in the thyroid and still wreak havoc.

 

[AlwaysTired]

This does not mean the virus is still not in your system...........it's just not floating around in your bloodstream as in the initial stages when it can be picked up by labs. EBV can attack and make a home in organs such as liver and spleen and even in the thyroid and still wreak havoc.

I agree. The ID doctor I saw just called me with my lab results- evidence of past infection with CMV, EBV, HHV, BBV(?) coccidiomycosis and influenza (which I had last month), but no current/acute antibodies. I asked her about getting me on an anti-viral since they seem to help a lot of people with CFS, and her reply was that they don't. I mean I told her that it's helped a lot of people, so yeah. Yet another disappointing encounter with a doctor who ignores the experiences of people (obviously not all, but some) who struggle with this illness

 

[Tammy]

I asked her about getting me on an anti-viral since they seem to help a lot of people with CFS, and her reply was that they don't.

Have you considered herbal anti-virals? I have been on a consistent anti-viral protocol a little under 3 yrs using natural anti-virals as well as some other supplements and am pleased with my improvements and how far my healing has come. I still have challenges but I am no longer suffering nor do I feel like shit 24/7. The healing journey with anti-viral protocol was not easy............nor was the healing linear. It came with ups and down and twists and turns along the way...............but I am glad I stuck with it because I am reaping the rewards.

I've never tried the prescription anti-virals .............but I believe there have been other members that have found a way to get them without prescription? (I think). Might do some searching on this site if interested.

 

[AlwaysTired]

Have you considered herbal anti-virals? I have been on a consistent anti-viral protocol a little under 3 yrs using natural anti-virals as well as some other supplements and am pleased with my improvements and how far my healing has come. I still have challenges but I am no longer suffering nor do I feel like shit 24/7. The healing journey with anti-viral protocol was not easy............nor was the healing linear. It came with ups and down and twists and turns along the way...............but I am glad I stuck with it because I am reaping the rewards.

I've never tried the prescription anti-virals .............but I believe there have been other members that have found a way to get them without prescription? (I think). Might do some searching on this site if interested.

Yes, and I would prefer them if they helped. I'm taking raw garlic right now (mixed with turmeric and cinnamon), since it also is anti-fungal and everything else too. Don't know if the garlic is doing anything though. Tried others in the past but they didn't work. Sadly I am one of those people who has more luck with pharmaceuticals. What are you taking that's worked?

 

[Tammy]

The anti-virals that I've taken (not necessarily all at one time). Cats Claw, Licorice root, L-lysine, Lemon Balm, Olive Leaf, Silver Hydrosol, Monolaurin. B12 with methyl and adeno forms along with liquid zinc sulphate are two supplements that are critical for me and that I won't be without and Vit. C also as it flushes viral toxins out of the liver . This is just a sample of my protocol. Sigh.........I wish we could all just take a super pill and be done with it.

 

[Diwi9]

@AlwaysTired - I'm sorry to hear about your experience with your doctor. The antiviral situation is contentious. I saw Dr. Chia and he was very particular about which antiviral would be most effective per my past viral infections and the symptoms I developed upon relapse. We are shooting in the dark with treating this illness, but I have faith in the clinical experience of a physician like Dr. Chia who has seen many ME/CFS patients before me with whom he has trialled antivirals. They do help some people and there are published studies backing this up. The more appropriate response from your doctor should have been, "They do help some people, but we do not yet know why."

 

[AlwaysTired]

The anti-virals that I've taken (not necessarily all at one time). Cats Claw, Licorice root, L-lysine, Lemon Balm, Olive Leaf, Silver Hydrosol, Monolaurin. B12 with methyl and adeno forms along with liquid zinc sulphate are two supplements that are critical for me and that I won't be without and Vit. C also as it flushes viral toxins out of the liver . This is just a sample of my protocol. Sigh.........I wish we could all just take a super pill and be done with it.

I've tried licorice root, lysine and olive leaf, but they didn't seem to do anything. Tried oregano oil and some other things I don't even remember.

I did the methylation protocol too.

If we're talking about all herbals and not just anti-viral ones, then I have tried a lot.

It really seems to me that the underlying issues vary widely for people, and CFS/me is just an umbrella term for symptoms, which also vary quite a bit (aside from PEM and fatigue). I do have these viruses, but they themselves are a symptom I think (most people who get mono don't end up with CFS, so why did I? Something set me up for that), so even treating them may not address the root cause.

Like everyone else, I wish we had more answers.

 

[IThinkImTurningJapanese]

...it's a positive move, but I've heard that getting Aussie Drs to prescribe it has been a challenge for some people.

Fortunately, change is the only constant.

MATTERS OF URGENCY - Medicinal Cannabis

Dear Mr President,

Pursuant to standing order 75, I give notice today I propose to move that, in the opinion of the Senate, the following is a matter of urgency:

In view of the overwhelming public and professional support for the use of whole plant medicinal cannabis, the need for it to be listed in schedule 4 of the Therapeutic Goods Act, so it may be prescribed by an authorised health professional and available for purchase from the pharmacy.