canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Curious what everyone's opinion of ALS is here (causes, treatments, diff in symptoms between Lyme vs ALS)
I have major muscle wasting and nerve issues. My LEFT SIDE is deteriorating more and more each month. It's ALL on my left side. Lyme flares, Bart flares, etc etc - affects predominantly my left side only. My brain is sharp as can be - but from my neck below it's wasting away.
I can also stand in the mirror and see that I'm sort of disproportional now (left side has less muscle, left side of gut is altered, left side of face/jaw is in a knot, left side of thyroid is GONE)
Is this an early sign of ALS related Lyme? Is ALS really deep rooted bacterial/viral infection?
My Uncle is dying of ALS right now (in wheelchair given less than 6 months to live)
The one thing we both have in common is our brains are SHARP as can be, but our bodies are deteriorating (his obviously faster than mine)
Someone talk me down! Tell me I'm crazy!
Seinfeld - White Discoloration episode "Cancer?! Are you crazy? Get out of here!" -George Costanza
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I'm sorry, I don't know. Borellia is one sided and the co-infections affect both sides. That is all I know.
If it is something else like MS causing this, which I also know nothing about, maybe LDN would help you. I would sure give it a try just to see if it helps. LDN does wonders to halt the progression of auto immune diseases like MS and even ALS.
This is the miracle drug of the 21st century but it is so safe and cheap, it is kept just as undercover as lyme disease. The money making pharmaceutical companies do not want you to know about it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Low dose naltrexone is being used to treat ALS. For info, check lhttp://lowdosenaltrexone.org/ and there is a very busy Yahoo group. You would have to join Yahoo groups http://health.groups.yahoo.com/group/lowdosenaltrexone/
Also a possible heavy metal connection. Amalgam and heavy metal toxicity can cause or contribute to ALS. There are a couple of good books by Andrew Hall Cutler - Amalgam Illness and Hair Test Interpretation - at lymebook.com. There is a good Yahoo support and information Yahoo group at http://health.groups.yahoo.com/group/frequent-dose-chelation/?yguid=491243442
Above all, there is the lyme connection.
Posts: 705 | From WA state | Registered: Jul 2011
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
cane,
Really upset to read this. Google muscle wasting + high protein diet. A friend of mine who was dx with HIV eats/ate a huge slab of beef when he would go into muscle wasting and it always pulled him out of it.
Can you increase your diet by mega amounts maybe by high protein and carb smoothies?
It reminds me of a time yrs ago before I came down with peritonitis and was hospitalized because I kept passing out and losing weight. I was on an 8,000 calorie a day diet because the infection was taking all my nutrients.
I would definitely increase caloric intake and see if that helps. I would be surprised if it didn't. Sending prayers,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Thanks for the info
I can also say that it really started and manifested quickly after I treated parasites with herbs (and seemingly opened pandoras box)
So I do agree that it may be related to heavy metals and endotoxins.
LDN, I'll check it out and ask my LLND.
Ugh I hate worrying about things like this - the truth sometimes hurts... but I'd much rather know it.
Just tired of wasting away at age 28!
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Thanks gael,
Ya I'm sure much of my muscle wasting is due to infection, atrophy, and the fact that I probably require a ton of calories right now (not to mention parasites as well)
I'm just a big mess of parasites, infections, metals, poor sleep, lack of exercise - & I'm tired of it
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
cane, I consume lots of milk and eggs which are good sources of protein. Dairy paralizes the parasites, so taking my antiparasitic herbs at this time helps to kill them.
GiGi also posted this about milk and parasites. Google best foods for muscle wasting. I know fighting this disease is a drag, but you're young and have a great chance to recover.
Since you're in Texas, maybe you can join a two step class and go out dancing. Great fun and excersize! I'm not kidding either. Push yourself out that door boy!
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
lol Thanks
Ya 2 stepping used to be my forte Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
if you google spacedoc.com als you will see info connecting als to statins
duane graveline wrote 3 bks about statins and mentions it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Burrascano mentions using creatine for ALS in his protocol(also says you must have adequate fluid intake when taking it).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Catgirl,
So is it about rebuilding muscle faster than "ALS"/Lyme/Cos can destroy it?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
posted
Hello Canefan, this is what I have found on the subject:
Thomas Levy in his book: "Vitamin C, Infectious Diseases & Toxins" writes:
"Kok (1997) hypothesized that vitamin C may prevent the formation of peroxynitrite in the brain and that lowered brain levels of vitamin C may play a role in the development of amyotrophic lateral sclerosis. (ALS)
A nitrite derivative, peroxynitrite, appears to be an important tissue-damaging compound that substantially increases oxidative stress in the affected tissue.
Whiteman and Halliwell (1996) showed that both vitamin C and glutathione "protected efficiently" against toxic effects of peroxynitrite.
Sandoval et al. (1997) looked at human cells in culture, finding that vitamin C decreases the peroxynitrite-induced cell death in these cultures.
The protective role of vitamin C against peroxynitrite-induced braindamage has also been advanced by Vatassery (1996).
Bohm et al. 1998) have also observed that vitamin C works very well with other antioxidants (vitamin E, betea carotene) in protecting cellls from the toxicity of peroxynitrite.
Shi et al. concluded that vitamin C provides "a detoxification pathway" for peroxynitrite.
Kirsch and Groot (2000) observed that vitamin C has a potent antidote effect against several different peroxinitrite-induced oxidation pathways.
Peroxynitrite appears to have some serious toxic effects and vitamin C has been observed to counteract these toxic effects.
The scientific evidence shows that vitamin C is very effective in blocking the conversion of nitrates and nitrites into compounds of known toxicity. At the same time vitamin C also serves to directly lessen the toxicity of the related nitrite compound.
Neurodegenerative diseases like multiple sclerosis respond well to high-dose vitamin C therapy. Many of these diseases may be largely due to unneutralized toxins, in which case vitamin C with its antitoxic properties is arguably the best treatment choice for such diseases.
-------------------- "They that are whole have no need for the physician, but they that are sick: I came not to call the righteous but sinners to repentance"(Mark 2.17) Posts: 149 | From Amsterdam | Registered: Jul 2011
| IP: Logged |
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Goodness, sorry to hear canefan. I don't think I know too much helpful for your situation, but want to pass on one tidbit in case it helps, as I hear all this talk of high protein diet.
My doc imports this protein supplement "MAP Protein" from europe somewhere and distributes it, supposedly very high quality utilization. So, if you need really good protein, maybe this would help. Of course, if you just need lots of calories, this is just pure protein, so not lots of calories.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i thought coq10 was real impt and in my case after a yr if i dont take it i end up in walker from leg pain
am i thinking wrong? is coq10 not helpful for mitochond problem?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Thanks for the info guys
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm sorry, Canefan, I don't know. Gael's friend doing better after a slab of beef is interesting. I wonder if there is a B-12 connection.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
canefan, have you been to a neurologist for an ALS diagnosis? I was dxd at Yale two years ago. I have muscle wasting/atrophy in my shoulders, hips, arms legs. I have trouble breathing and swallowing at times too.
I went for a second neuro opinion a year later and they couldn't find any facillations during the emg so they couldn't say it was definately ALS. The antibiotics have pretty much stopped the shaking but I continue to get slowly weaker.
I couldn't put up the christmas tree this year and I'm having trouble climbing stairs.
ALS forum is a good website but they don't believe in lyme and get angry when you post about it. Most ALS patients die so quickly and the abx don't work.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I haven't been to a neurologist nor do I plan on it.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
posted
My husband also shows all of the ALS symptoms. His Lyme doc says Lyme, probably co-infections. He has lost 30 lbs during summer. Manifests like yours, all on left side. Major limp now. Was started on Rocephan IV several weeks back but his liver enzymes rose so high they stopped it. Just yesterday was started on Claforan IV drugs. So we'll see how this goes. The Rocephan did definitely improve all symptoms. Hes on a ton of different supplements and nutrients. Hes so much better than he was over Thanksgiving. Good luck. Don't give up. If theres any possibility that its lyme and not ALS, plug away.
Posts: 305 | From United States | Registered: Nov 2011
| IP: Logged |
posted
I had primarily ALS type symptoms for over 5 years, with muscle fasciculations, muscle atrophy and progressive weight loss/weakness as my major symptoms. Oral meds minimized and seemed to slow the progression, but IV antibiotics have me (I hope) near "remission". I was on IV rocephin for 2 months, then had an allergic reaction and was prescribed IV Azithromyocin, which I have been infusing since Aug 2011. We added Tindamax (and I recently added Samento and Banderol) and I am nearly symptom free at this point. It is such a blessing! I'm stronger, have put on muscle mass, have energy to work 2 days/3 days a week. All I can do in encourage others to hang in there, try IV antibiotics if you can (and more than one if you need to to find the right combination for your situation) and know you can turn this around if you don't give in. Also, I know Burrascano doesn't recommend aerobic exercise, but I walked or hiked at times when perhaps my body was too weak, but it would have been worse on my spirit to quit, and I don't feel aerobic exercise decreased my immunity but has played a pivotal role in my "recovery".... Never give in!
Posts: 143 | From Louisville KY | Registered: May 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Razz]](tongue.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic