posted 16 November 2004 21:56            

One thing and only one thing worked for me...
Methycabolomin injection. Its expensive but it really works. The pills had no effect.

If you get it make sure that it is made good japaneese grade powder. There are a lot of cheaper powder sources around but they are from either portugal or china. The chineese supplier selld the powder in 45 gallon paper drums (presumably for compoundng into tablets) AVOID THESE SOURCES.

posted 16 November 2004 22:00            

quote:

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Originally posted by riversinger:
Lots of yoga videos have some restorative poses, but I've only seen one that is all restorative. I haven't seen it, so I don't know how good it is.

Yoga Journal's Yoga Practice for Relaxation

Here's another good book I saw today: Yoga For Wimps
It has some pretty good adaptations of poses for people with limitations.

I'm guessing you could get some of these, maybe even the video, from the library to try them out.

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posted 16 November 2004 22:23               

right now any kind of exercise is just not possible..... even sitting with my legs bent kills my knees... doing wash increases my pain alot....

other than laying on the couch watching tv every little thing seems to increase my pain... and im already in pain management.

as soon as i'm well enough I'll try the various exercise suggestions.

now i think i'll try breathing exercises cuz my lungs are one thing on my body that actually work...

visualization (sp?) is good idea too....

unfortunately im allergic to the duragesic patch cuz that really helped my... although my pain wasnt as bad back then.

I'm going to look into the herbs and juice suggested as well.
Thank you all... for all the great ideas.

posted 17 November 2004 10:08            

I am sorry for your pain. I have that also. It takes a lot of deep breathing (and Advil) for me to work through it. But, when I was more athletic I would push through the pain to reach a finish line. I try to think of that when doing my little exercises now.

Your hiking spots sound wonderful. I am a very visual person and got an instant image as you described them. I could almost smell the air, snow, wind..........

For the yogis out there: Gaiam has some pretty good yoga videos. I use one that is for "stress and relaxation". I didn't buy the props - too expensive. I just improvise.

Azure: My Dad was really, really sick with cancer that had spread to his bones. He could barely move. The only thing that brought him relief was having a very caring physical therapist come to the house a couple of days a week to help him stretch and move a little. Having this person help him made it much easier for him. May I suggest that you see if you can get a script from your Dr. for a home Physical Therapist? Insurance did cover several visits for my Dad. Just a thought. It is actually one of Dr. B's recommendations in his guidelines.

Today I am not moving well. Last night I could barely climb the stairs. But, the sun is out and the New England air is crisp. Can't complain too much.

posted 18 November 2004 04:29            

2 things help a little bit with the fatigue. Lemon juice in water- I think lemons have something good in them besides vitamin C.

And pain releivers. I've kept a very minimal rx of darvocet going for 10 years. I only take them when I absolutely have to. That way they keep working and the docs have no problem perscribing them. Pain is exhausting. Constant pain is a lot of stress on your body. Even a one day break from it is a really nice refresher & does help a little with the exhaustion & with healing.

I have to say though that my pain tolerance has gone up too. By the time I'm aware I'm in pain now it's too much for the darvocet, & I doubt very much I'm resistant to it. It does take an edge off it though.

posted 18 November 2004 06:29               

4 years ago I was working out in the gym 3 days a week, hiking, swimming.

3 years ago I was reduced to taking frequent long walks.

2 years ago I found I could no longer walk more than a few blocks, and paid a terrible price for that for days.

Today I can lay myself out just going up and down the stairs from my 2nd floor apartment.

Not objecting to anything anyone's said, just a gentle reminder that some of us lived for exercise before we got sick, are wrecked now walking across the room, and just a bit sensitive on the whole subject.

posted 18 November 2004 08:11            

I agree about the sensitive issue of exercise. I think we are all just trying to help and sometimes forget that we have been where some of you still are. I too could not walk a flight of stairs last winter. A couple of years before I was cycling parts of the Tours de France route for 10 days straight. I have doubts that I will ever be able to do that again.

But, I think it is ok to give some hope and to let those who are unable to exercise know that maybe any little movement can help. I struggled to walk to the mailbox, with my arm on my sister and a cane in the other hand. Without that little push every day I believe I would still be lying on the couch.

It is good to have a willing buddy or therapist to encourage you.

I do understand your lack of mobility and your sensitivity. My hope for all of us is that we will be at least 1/2 the athletes we once were, if not more. Helps to think positively.

I wish you nothing but wellness.

posted 18 November 2004 11:21            

Restorative yoga is NOT exercise. I am not advocating pushing people. You spend 10-20 minutes in a pose lying completely supported by blankets and pillows, relaxing deeply and breathing. No effort is required. You can do it in bed.

The reason it is better than just lying on the couch is that the body is supported in poses that allow deeper breath, and for the blood to move into areas that have been restricted.

It does not require a lot of knowledge to learn one or two poses, especially if you have someone who can teach you.

I agree that it is impossible to push to excercise when really ill. I've been there. When I first started thinking about doing yoga again, I just watched the videos and IMAGINED doing the poses. It took time to work up to doing any.

However, circulation of blood and good breathing is important to relief of fatigue. Someone mentioned a physical therapist to do passive exercises, which is another good option. Anything which gently relieves muscle tension and moves the body will be helpful.

I'm not trying to push this particular thing, I just don't want people to misunderstand, and possibly miss an opportunity.

posted 18 November 2004 15:47            

I had it from the lyme, then got better on antibiotics.

THEN, had it from candida. The candida fatigue was not as bad as the lyme fatigue, but still was not able to even drive.

Nystatin was great, doing this now again, and oil of oregano. I also have found a great probiotic to help, had tried many and finally found one that works for me, my body. FOS is in some probiotics and was causing me fatigue, and it was not probiotic herxing, it did not agree with me. Some are fine with it, others are not, makes them worse. New info to support this.

I think one has to find the root to the fatigue. I used so many supps to get rid of the fatigue when I had the candida causing it and nothing worked.

Possiby a break from antibiotics to treat candida but work with your LLMD to guide you. I went off antibiotics too long and relapsed REALLY bad. I was off them for 75 days, should have stayed off only 1 month.

DIFLUCAN also really helped the fatigeu caused from candida, but I cannot get it at this time, maybe later.

Depends on each of us.

I dont take many supps, I was taking the coenzyme Q10, while on last antibiotics zithro and flagyl, but now am on DOXY and the coenzyme Q10 makes me sick while on DOxy, dont know why.

I believe that supps are NOT the answer for everyone. Some do so well with supps, I am one of the ones that dont do well with a lot of supps, and have to have them usually tested at a ND's to see if they agree with me.

POssibly you dont need all the supps you take. Possibly a good multi vitamin/mineral is all and maybe some EFA's.

Not giving advice just suggesting.

Also, I have a zapper, and I use this daily, then take a break from it, and back on it. It helps me a lot I find. I also herx on it when I am in the 28 day lyme cycle, and this is quite surprising, also herx off and on from it, so it is killing something. It was not strong enough to kill lyme, as when I was off antibiotics used it and still relapsed.

posted 18 November 2004 15:56            

Just reread about your stomach...

I had problems with my digestion.... antibiotics helped, then due to them killing off good bacteria, had problems again..

UNTIL...

I found this probiotic and nystatin. I used many before this(probiotic), and this one, well, my food was now digesting again. I was getting food in my bowel movements, not good. This probiotic stopped it, and am now feeling better, and helped with candida fatigue.

I herxed with it, but it went away after several days. I take 2 a day with food. Has to be with food for me, as it says on the bottle. Worked and works wonders for me.

I am in Canada, and the one I get has 30 billion per cap, here in the USA, they have only 20 billion per cap, maybe cause the USA wont allow as high a count.

Here is the site.
http://www.florahealth.com/flora/home/usa/products/TG9.asp?CategoryID=108&ImageFlag=1#61958

Also, if you take s. boulardi with nystatin or diflucan, it is not a good idea. I read that the antifungal drugss will KILL the s. boulardi as it is a yeast, a friendly yeast. Antifungals wont kill the probiotics.

s. boulardi is good though, VERY good for some, I took it with great results years ago... but not along with antifungal drugs.

posted 18 November 2004 16:32               

I remember when making one phone call during the day was an accomplishment.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I believe a good chiropractor would help with your fatigue and improve your immune function (among other things) if you could get to one.

An adjustment also releases endorphins so would help with mood too.

Good luck and I hope you find some relief soon.

You deserve it.

posted 18 November 2004 19:52            

How much is too much. What about an hour a day.

I know in the past I couldnt excersise because after I did I was in pain.

Even more pain after wards. I even fourced myself every day... Didnt help/

quote:

---

Originally posted by Raskilnokov:
Interesting. I debate this back and forth also--the excercise vs. rest.

Excercise can stimulate the body and mind, but proper rest can also rejuvenate.

Too much of either tips the scale.

Although "listening to the body" can be tricky. Sometimes it seems better to be active walking, other times a huge relief just to lay down.

Sometimes I feel terrible sitting in a room in a meeting, other times having to walk a certain distance can be very aggravating.

Hard to know what's best.

But early on in disease, in first 1-2 year, I hiked Pikes Peak 3 times and have no regret whatsoever.

Wonder if I'll ever be able to do it again...

[This message has been edited by Raskilnokov (edited 15 November 2004).]

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posted 18 November 2004 21:22               

I am a big fan of stretching. If you have mobiity problems you might want to try warming your body while laying in bed with a heating pad. After stretch to what's comfortable, all the muscles. You can do this a couple of times a day if you don't get too much pain from it.What good about this when you have no energy to get up is you can just lay back and rest.

When my neck was really bad, I used to warm it, and then do chin stetches ten times. It hurt, but it got better. I had lyme then and didn't know it and suffered serious neck injury.

Doing this with deep breathing exercises, will improve the sluggishness in the body over time and the days you feel better you can do the more demanding stuff. Something to think about when too tired to do anything that requires actually getting up.

posted 19 November 2004 00:44               

That's what had happened to me before as well. I was way too tired to move much and too much pain to endure any strenuous movements. After trying to excercise because "everybody" told me it's good for me and I ended up more sick for 1 to 2 weeks after that. So I tried Podi Patch for 5 days from www.podipatch.com and I noticed a great result for both symptoms so I continue the program. I am not painfree, full of energy and no more inflamation in from my calf to toes. I've been recommending this products before, but it seems no one takes notice since everyone is still voicing their pain and suffering. Now I tried this product from a LymeNet member so I'm another living proof that this works and no side affects because it is all natural. Really, what do you have to lose but the possibility that it might give you.

posted 19 November 2004 00:48               

What I'd said was "I'm now painfree,..... no more inflamation from my calf to toes."

posted 19 November 2004 01:33            

Well I started taking it again and notice a difference already. Today I was able to stay awake all day. It sounds like a minor thing, but for me it isn't. Most days I simply cannot function or stay alert and have to sleep for several hours.

posted 19 November 2004 10:34               

quote:

---

Originally posted by fulfillment09:
I've been recommending this products before, but it seems no one takes notice since everyone is still voicing their pain and suffering. Now I tried this product from a LymeNet member so I'm another living proof that this works and no side affects because it is all natural.

---

Go to Medline or PubMed and type in "mangosteen+xanthones" It's important that you type it in that way.
http://www.onmangosteendaily.com/go

Mangosteen contains xanthones that act as COX2 inhibitors. So basically it works like some of the now-defunct prescription meds do/did. But it's natural and can't harm you! Awesome!

------------------
oops!
Lymetutu

posted 19 November 2004 15:40               

The only thing I know that helped me (actually used to be worse) is antibiotics. So, I know the infection(s) have something to do with it, but I seem to have other problems too. Oh, I forgot.. flushing niacin (don't take more than 500 mg because of liver) and MethylC b12 shots and glutathione IV ($$) help for short periods.

I know most people with lyme have fatigue, but I'm not sure most are aware how very intense it is for a minority of us and how hard we crash from exercise. I wonder if this exercise intolerance is even directly lyme.

Strange that many of us with this problem used to exercise vigorously.