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mitochondria disease caused by Lymes?

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Posted 1/20/2013 9:56 PM (GMT 0)
Been doing a lot of research this weekend, trying to figure out what I could possibly do to help myself. It appears that I have some type of mitochondria disease, I am assuming, caused by Lymes. I just get weaker and weaker, even though I have been on treatment for a few years with abx. Most of my original symptoms have gotten better or disappeared all together. Low platelets, euvitis, and the muscle weakness cond. are not getting better, they are getting worse. I can't excercise at all, if I do, I will crash. I go to work but basically try to stay at my desk and do very light work. If I was to do much of any physical work, I wouldn't be able to finish out the day, say nothing about make it to work the next day. Does anyone have any experience or knowledge about this issue? Besides the weakness and complete lack of stanima in my arms and legs, I don't have any reflexes(none at all) when the doc. hits my knee with that little reflex hammer thingy. I also have what I would call, a lack of sensation in my limbs. My legs will get all wobbly and all, but I can't sleep at night because I don't get the "tired sensation" that I should be getting in arms and legs. I also get bouts of muscle twitches in my legs. It doesn't appear that mitochondrial issues are fixable or reversible but am hoping that if it is a secondary condition, It might be salvageable. Again, can anyone relate to what I am talking about or have any input? I am so tired of fighting, it almost like I don't care anymore. Thanks to anyone that could help.
Posted 1/21/2013 12:31 AM (GMT 0)
1. If you are taking statin drugs for lowering cholesterol, stop taking them - they destroy muscle and mitochondria

2. Mito cocktails usually include L-Carnitine and Co-Q10 in pretty big doses -- these supplements can be very helpful.

3. Consider looking in to methylation issues and maybe start the simplified protocol from Rich Van Konynenburg, Ph.D. -- see livewithcfs.blogspot.com/2012/05/dr-konynenburgs-simplified-methylation.html

4. Do not do any aerobic exercise (jogging, etc.). Focus on deep breathing and resistance/strength training type exercise (yoga, weight training, Tai Chi, etc.) instead.

5. Avoid artificial sweeteners, preservatives, flavors/colors, corn syrup and GMO foods (packaged, non-organic foods) -- i.e., eat organic produce and grass-fed organic meats/free-range organic chicken.

6. Consider the possibility that coinfections, parasites, and/or candida have not been adequately addressed, and may therefore be contributing to your decline...

7. Make sure you are continuing to detox, as the junk we are exposed to on a daily basis is quite a long list (plastics, air pollution, water pollution, etc.).

I hope this helps...take care,
Posted 1/21/2013 3:09 AM (GMT 0)
Razzle,

  Thanks for the response. I am hoping that there is a chance that this could be due from a co infection instead of Mito disease. It is easy for us Lymes people that have been run through the whole gammit to always assume the worse. I sure fit the criteria for Mito Disease, but I guess looking at it from a different angle, I guess this fits into the criteria of Lyme's and co infection. I find it odd that so many of my symptoms have got better but the muscle weakness has got to this point. I am hoping that maybe being on ABX for so long and not doing any detoxing procedures might be playing into it. I have been taking epsom salt baths everyday for the last 10 days or so, I am hoping that continuing this everyday, over the course of weeks and month's, I will slowly gain strength. Maybe my body is infiltrated with dead Lymes bacteria that never got detoxed out of my body?? Just thinking out loud here. I wonder if having no reflexes is unheard of or is fairly common for different reasons? Just trying to think positive here. Thanks again, all other thoughts welcomed.

Posted 1/21/2013 3:51 AM (GMT 0)
Before I was diagnosed w/ Lyme Disease, I had a neurologists mention the possibility of mito. disease. I researched it and it scared the heck out of me, so I can understand why you would be concerned about that. Certainly, if it is mito., the mito. cocktail would be beneficial. Mito. disease is very difficult to diagnose and treatment is always supportive anyway, so you may want to look into the mito. cocktail anyway. Probably wouldn't hurt even if that's not what it is.
Is is very possible that the remaining symptoms are from lack of detoxing and simply the need for more time for your body to heal. Dr. Bursscano emphasizes that physical therapy and intense reconditioning is needed in chronic lyme patients. He says that the exercise should be strength training, not cardio workout. Maybe id you focus on detoxing while also working on building muscle, that would help.
Posted 1/21/2013 12:31 PM (GMT 0)
I appreciate all the advice, you folks really seem to know what is going on. When I get home from work tonight, I will be disecting and researching all of the ideas and suggestioins so far. It is giving me some hope. Yeah!!...chrisnj,  Do you take this cocktail because you have been diagnosed with Mito disease or are you thinking your Mito issues are from Lymes disease? Again, if it is o.k. to take these cocktails even if I am not Mito positive, it apparently won't hurt anything?

Posted 1/21/2013 12:44 PM (GMT 0)
Razzle..I did look into Methylation during the little time I had last night, very interesting but yet, complex. I am interested in learning more when I can find some time. That seems like there could be something there...Thanks.
Posted 1/22/2013 4:22 AM (GMT 0)
taysdad,

Did you ever have your cortisol levels tested? A lot of people with lymes disease have adrenal issues and the symptom of crashing after I exercise was the symptom I told my doctor about and that was when he decided to have my adrenals tested. Needless to say, they were in poor condition and needed some help. After some time, they leveled off. I use ADR by Pure, (vitamins) and they maintain my levels well. Good luck!

Samantha
Posted 1/22/2013 12:17 PM (GMT 0)
Sam,

Great information and a good lead for me to look into. You guys are giving me some good options, yeah!! I did some reading last night and found that Lyme and mito issues kind of overlap, mito is a common concern for Lymes people. I guess Lymes induced damaged mito would be better than the actual Mito disease, which has a pretty grave outlook...I wish I could start strength training as recommended but I am just not at that level yet, very frustrating. If I was to go to the gym and work out, even lightly, for any length of time, I would crash hard the next day and it woould take me a long time to climb back to where I was. Again, it could be the lyme and years worth of dead bacteria all through me that never got detoxed out. When I take a detox foot bath, say, for 1/2, I always will have a headache later on in the day (herxing). This tells me that it is certainly doing something. I think next, I really need to buy a IR sauna, lots of folks say that is everybit as effective at detoxing as detox bath's, plus the heat itself kills off bacteria. But in the interim, I will get my bloodwork done and also start looking into the Mito cocktails, can't see how that would hurt anything even if I don't have Mito issues. As Razzle mentioned, I also need to investigate the meds I currently take to make sure that they aren't playing some type of role. Thanks people.
Posted 1/24/2013 5:30 AM (GMT 0)
taysDad,

There are treatments for mitochondrial issues. I have been doing them off and on. Not disease as I understand it, but a result of toxins and infections.

I also have fatigue as primary symptom and the exercise intolerance, like you.

Are you seeing a LL doc? there is so much complexity here, that I highly recommend a good LLD...LLND or holistic LLMD. I have been doing this three years and can tell you a lot, but in the end, there is so much that a doc is really imporant, IMO to sort it out...see what to treat first, etc. that being said :) ....



IR sauna..yes it is way better than regular. Possibly a must.

Here is a link Burrascano's notes on Lyme..toward the bottom are exercise guidelines..they help me tremendously! And you might learn a lot for the other lyme notes.

http://sonyafightslyme.blogspot.com/2011/03/burrascano-notes-from-march-21st-talk.html

Do not do aerobic exercise at all. Very little weights or none and never two days in a row..this is from the link above.

Mycoplasma infection is thought to be related to CFS (lyme related or not) and exercise intolerance.

There are different supplements to support mitochondrial function, as mentioned above. I also think toxicity plays a big role here. And antioxidants. You need lots of good antioxidants for mito to function. I believe this dysfunction is reversible. In fact, I am counting on it :)

There is a test for genetic pre-disposition to poor detoxing in the body. from Genova diagnostics. I think the name is detoxigenomic profile. This has been very helpful to me and docs in knowing how to help me detox.

The methylation issue is also important..I am looking at that now. Just got tested for the genetic marker..I do not have it. But it seems there is disruption in the cycle.


Neuro-toxins in the brain, espeically ammonia, can cause CFS-like fatigue. Here is an article on Leaky brain:
http://www.hansacenter.com/pdfs/AmmoniaBloodBrainBarrier.pdf

Do you ever smell ammonia? I did and dr. J was the first to recognize it was a problem for me. I take Neuro-anitox CNS/PNS for brain symptoms (not just ammonia) and for ammonia detox itself, l-ornithine-aspartate. It works well. the long term solution is to get the lyme and co-infections under control.

well..that is alot! I do hope it is helpful. Hang in there!! It is hard to work with the fatigue..I so get that.

Blessings to you,
Nan
Posted 1/27/2013 6:34 PM (GMT 0)
I will be getting my cortisol levels checked in a couple weeks, that sounds like a good place to start. He also has a few other things checked off on the blood test page, I forget what they are though. I will post results when I get them in a few weeks. Thank you to everyone who have expressed their thoughts and suggestions and also the links to the articles. I have printed this entire post off so I won't lose any of this info. I will disect everyones advice and formulate a plan. Been away from the site for a few days, sometimes I just get overwhelmed and just shut everything out for a few days so I can re-energize, if that makes any sense.
Posted 1/27/2013 7:35 PM (GMT 0)
Good luck!

I agree with you..adrenals are a good place to start. I take cortef and it helps a lot. I get my cortisol levels tested several times per year and cortef adjusted accordingly. Helps with sleep, too.

Even with it, though, I have the fatigue and exercise issues. It would be much worse without, though.

It is overwhelming! So much info. You are wise to take it one step at a time.

Hang in there!
N
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