Help with residual effects after VM a year ago.

[tatumlarson]

Hey all,

I was diagnosed with VM a year ago after contracting a brain parasite that causes severe neurological issues/damage. The whole healing process has been very confusing and frustrating considering that the parasite itself is not well known, there isn't really a treatment for it, and everyones residual effects manifest differently. A lot of people end up disabled, have seizures, etc. but others seem to walk away from it after a brief recovery. Until recently I was under the impression that the pain and fatigue that I am still dealing with was from the parasite, but it is becoming more clear that it may be after effects of the meningitis. Like many of you have noted, doctors are not all that helpful in this arena. I have seen so many physicians this last year and received no guidance in regards to alleviating the pain, understanding what kind of timeline I should be expecting in regards to feeling somewhat normal again, etc. I have not been able to consistently work because of this, I am 25 and was in the middle of my schooling and I just want some idea as to when I can somewhat reintegrate back into society without dealing with this at such an extreme. I guess what I am asking is if anyone has really found helpful treatments that relieve the constant head and neck pain, as well as the fatigue? The only thing that I have found to truly help was consistent craniosacral therapy, it relieved the stabbing pain in the back of my head as well as the cranial pressure, but if I overexert myself I crash. Fatigue is something I suppose you just have to work through, all I really want to know is if there is an end in sight? Who has recovered back to a point of feeling somewhat high functioning again? It would be hugely appreciated any advice. Thank you!

Tatum

[OlamanaMartel]

I had, pneumonia, leptospirosis, and viral meningitis. A different animal, but it took me 4 months to be able to get up and move about. I still need rest, 8 months post. I don’t usually get going till noonish , and really need to stop around 3:00 to 5:00 or it sets me back for a bit.

They r no help at all in the medical field except for saving our lives. I guess because we r all so different they don’t want to commit to anything. I also have fibro, so there is that that is a constant.

I wish u well on recovery, and my suggestion is to not rush it and rest as soon as u feel tired. It will pay off. I also get acupuncture, that seems to help with it all besides cranial sacral Work. I have been getting cranial for several years now, but acupuncture since about 4-5 months post , but should have started sooner, but hadn’t heard of it helping till then. I had had acupuncture for fibro that was painful and she said it could take up to 40 treatments to get result, so I didn’t persue it as the $$$$ thing. We have a clinic in Hilo that I can get for 20-50 $ sliding scale, so that works for my low fixed income. Best wishes, sending healing and energy your way😉

[Chicagogirl]

Hi Tatum,

I contracted VM from West Nile Sept. 2016. I was told that any residual effects at one year out would be permanent. I was much older than you (66) but I was a runner and had some strength left over from that.The loss of energy and balance were the long term problem for me.

However, I'm almost two years out and I believe I am still improving but at a slower pace.

I can say that what helped me the most was staying physically strong enough to stick to a routine. I seem to have a finite amount of energy each day (energy was something I used to take for granted) and I must use it each day wisely.

I made myself walk every morning no matter what. I had trouble with appetite and forced myself to eat a banana while I walked a mile whether I felt like it or not. It seemed to boost my strength, my spirits, and my confidence.

I know what you are saying about energy crashing. It was the one piece of information from the neurologist which was right on target. You need to push the boundaries a bit to get well, but if you push too hard the price is energy crashing. Then you must stop.

I thought I would never be normal again, but I have been "slowing creeping" back to normal this second year out. I don't know if I will ever be back to exactly where I was, but at my age it's hard to say what is left over VM and what is age related.

I can do most of what I used to except run long distance or balance a bicycle. I suspect at your age you will be able to get back more.

Stick to a routine which gives you something to mark your progress. It gives hope and motivation. Doesn't need to be strenuous, just something to make you feel more like your old self, even when you don't feel like your old self. It helps the confidence which helps the motivation. Allow yourself to feel the "down" moments but try not to hang around there too long. Can become a bad habit

Best wishes to you and keep pushing back a little at a time.

L

[Lippistix]

Hello,

Sorry to hear you are still suffering. Below is my daughters account of how cranial osteopathy helped her tremendously. So i would persevere with this amazing therapy if you can, as and when you need it. Its a huge relief. November 2015 she contracted VM, but today she pretty much feels back to normal, so don't lose all hope. It takes time but you will get there.

You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck

[Hidden]

After a year and a half of 24/7 head pains, headaches, fatigue, light sensitivity, etc. I found something that stopped all my pains and I have felt great for two years now.

I was trying to find things to boost my immune system. I came across Graviola tea. I ordered 30 organic teabags off Amazon. I started drinking just hoping to help lymphatic system.

To my total and complete shock, about two days after drinking I woke up with no headache, no head pressure, no neck soreness. Within a couple of weeks, all my symptoms decreased significantly.

After two months, I felt more normal than I ever expected. And I cut back tea to just one or two cups a week. And cut back all supplements to one week on, one or two weeks off, to give liver a break, and because I hate taking pills everyday.

I also take a few brain and energy things: gotu kola, apple pectin, and grape seed extract. I use echinacea and dandilion roots for immune system, (teas or supplements) I prefer teas and just add to my graviola tea.

And milk thistle before bed to keep liver from getting overloaded. And because mine is viral, I take Neem Capsules.

Hoping these can help others. The only time I've had any pains or symptoms in the last two years is if I run out of graviola for over a month. I've run out a few times, and symptoms do come back. So, I really try to keep up on it.

Normal life is possible again!!!