METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Update:
I'm responding again to the Malarone. It caused some significant depression at first when I increased from 2 tablets to 3, as instructed.
My LLMD told me to expect it, so mom and I watched out. I'm better from that, but now I started the Rifampin, and "oh my god" it's hitting something. I feel like the worst I've felt in probably years. Some type of die off is going on. I'm hopeful it's just that and nothing anything else. It "feels" like a massive herxheimer reaction. The side effects have been typical: some anxiety, red/orange urine, and debilitating insomnia.
The Seroquel did not work. I also tried the Xanax, and just like Valium, it caused the "reverse" effects that I wanted. My heart was pounding all night with anxiety and insomnia.
Last week while using the Rifampin, I was around 25% function. If I dropped to 20, I would have had to stop and contacted my doctors. 20% has always been marked by hospitalization, but now that we know many of the pitfalls from years of doing this, it would be unnecessary as long as I stopped treatment temporarily. Herxheimer reactions can literally kill if they cause acute damage during the immune system activation.
I'm waiting on the Rifampin blood work. I stopped it last Friday so I could get the results back to make sure my liver is ok. Hopefully the liver support my LLMD gave me does the trick.
I wrote a thread here about the events with the Rifampin:
quote:I noticed too there was a comment about checking out the mold or such in your house. Have you done that. what methods are you using? are you just using those mold growing kits and putting one in each room and outside to compare? or??
I have the test kits but I haven't used them. I've had too much going on. My numbers keep going down each time I test the Mold, and I've treated it extensively, so I probably am ok, but the method I'm supposed to use is the kits. I have two of them. My LLMD told me to put one in the bedroom and living room (Where I spend all my time -- I also had my AC's in those rooms).
So anyway, that's all.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Sorry to hear all the hell you've been through MB.
I wish there was a way for you to try HBOT - sometimes just a couple of treatments will give a good indication whether it can provide a cure or not.
It sounds to me like you have heavy biofilm buildup - I can't imagine anything else that would withstand the onslaught of treatments you've been through. I was reading something last night about researchers looking into the chemicals used to clean pools because a variety of bacteria form biofilms on the side, but didn't see anything that looked like results you could use. I don't suggest drinking bleach:)
On the biofilms note, however - have you tried any of the proclaimed cures for biofilms? I've seen a few herbs suggested as useful in breaking them down.
My apologies if that was already covered, it's a very long thread.
Posts: 98 | From Maine | Registered: Jul 2009
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posted
Haritaki is good for biofilms. I could not take it in the form of Triphala, it was too strong, but Banyan herbs makes Haritaki alone. It is the herb that was used in that famous science project where the girl learned it broke up biofilms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Hi all - it's been a while. I (unknowingly) broke up biofilms using Detoxamin (chealtion) in the fall and had a massive relapse!
My LLMD and I had know idea my bug load was so high. I had been functioning at about 90% or so..
It's been a rough few months..
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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METALLlC BLUE
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posted
So I began back on Tetracycline temporarily so I could take a break (symptom wise) from the last year of abuse I've subjected my body to. I've been working with Dr. H in NY, as you know. We tried everything except IV. He wanted to do it, I declined for now.
At any rate, exactly on the date I said I'd be very sick from the Tetracycline Herxheimer reaction, I am. Wednesday (today). I began the drug March 2nd, it is now 8 days in. By the 12th day I will improve from 35% to 40%. If fortunate, by the 14th day, I will improve to possibly 45%. I will then hit a plateau and remain there.
I have tried all the conventional drugs we typically use for Lyme, including Minocycline and Doxycycline. Yet, why is it Tetracycline specifically is the only one to produce this perfectly timed Herxheimer response and then improvement period?
The only other drug to cause improvements which were similar was Doxycycline. However, the Doxycycline loses it's effect after about 1 month. The Tetracycline doesn't lose it's effect for 6 -7 months, then it must be stopped for 2 months, and then rinse and repeat (8th day Herxheimer, 12th day Improve).
The other drugs which caused similar reactions in half that time (4 days) were Bactrim and Rifampin. Rifampin caused the Herxheimer reaction but never led to progress of any kind. Bactrim was discontinued due to side effects.
What is the common denominator here? I don't know. Tindmax, GSE, and other drugs showed no progress or change.
Lyme is definitely present. Testing confirms that, Malarone caused a significant decrease in breathing problems and night sweats, so it's presumable. The short reaction time to Rifampin and Bactrim are intriguing. The Herxheimer reaction caused by these two drugs is much different than those caused by Doxycycline or Tetracycline. They are perhaps 3 times worse, but also are shorter in duration. The reaction on Tetracycline lasts 2-4 days, the reaction to Rifampin and Bactrim lasts 1-2 days.
We could assume Babesia, Bartonella (or some other unknown infection), as well as Lyme Disease are responding to these drugs. Malarone led to improvements in night sweats and breathing, while Mepron, Zithromax, Arthemesiae, and Lariam did not.
It appears Penetration of the drug may be the problem. LDN did not result in any changes. Adrenal therapy improved test numbers drastically, normalizing their function, yet no symptomatic improvement took place. Three rounds of VFEND/Diflucan substantially lowered Stachybotry Chartarum IGA numbers, probably close to normal now, though I have not retested. It is assumed given the numbers lowered by about 1/3rd to 1/2 each cycle. Initially 6.9 (without treatment), then 4.8 after 10 days Diflucan, then 3.2 after about 12 days VFEND. I have just completed 17 days of VFEND. Given the last number was 3.2, the average decrease should be about 1.2 to 1.6, dropping the number to 2 or less. Normal is below 1. 17 days is a long cycle, so the number may even be normal. No progress in symptoms have been made, even as this number dropped.
The next therapies on my list are as follows.
Continue using:
Lamictal, 200mg x 2
Buproprion (Welbutrin) 200mg
Trace Minerals Research (liquid) 30-40 drops per day in Filtered water.
Chemet 400mg every 3rd night w/10 drops Algas, and 7 tablets Chlorella. (Detox for heavy metals).
Heel Detox Homeopathics (Liver, Kidney, Lymph)
Cholestapure (Detox Binder)
Lorazepam 2mg (Sleep)
Pentasa 1,000mg x 2 (Bowel inflammation)
Tetracycline 1,500mg
VSL, Theralac, and Saccroymycins Probiotics)
Magnesium 1 gm
I'm also eating reasonably well, and juicing vegetables (Green/Red Pepper, Carrot, Celery, Spinach, Brocolli, Cucumber, Romain Lettuce). I add Stevia, 1 packet
Fruit Shakes (1 apple, blueberry, strawberry), 2-4oz Uncooked Oatmeal, 1 cup Soymilk, 2oz Cottage Cheese, 8-16oz Filtered Water, and Whey Protein. I also add stevia 1 packet.
(The Veggie/Fruit shakes are done bi-daily. One day I do Veg, then next day I do fruit).
Dietary wise, I feel solid. Yeast issues are not present, and Lyme specialist agreed. Different diets were tried. None resulted in changes in symptoms other than bloating/gas. These symptoms change relative to gluten intake, but also to inflammation. When systemic symptoms improve due to drug therapy (such as Tetracycline), the bowel symptoms improve independent of diet.
My next plan is to cut out some of the things from this current routine, leaving a barebones framework. Cuts will be Tetracycline, Theralac, Algas.
Treatments which worsened symptoms in a "non-Herxheimer" response were Fish Oil (Multiple brands), and Vitamin D2 and D3.
Transfer Factor Plus led to "significant" improvements when used entirely alone 9 years ago. I'm going to give the latest brand another shot. When I improved, It only lasted one week, but the improvement was from 25% to about 50-55% at 9 capsules per day. Cost wise, this is not sustainable. No herxheimer reaction or flu-like symptoms were seen.
I will be starting the Bionic 880 in a few weeks. Rife therapy will wait as a result of the shorter treatment duration of the Bionic. All necessary tools will be used in the same pattern that Dr. W in Germany uses. However, instead of IV, the preparation of Sodium Bicarbonate will be taken at the same dose orally. I will try hard to cut my drug treatment to bare minimum, but it will not be entirely possible to remove them all, which is what Dr. W prefers. I will also be unable to avoid EMF fields, as I live in the city of Springfield.
If progress is not made, I will attempt to use the Bionic in another location where EMF is significantly reduced. Nosodes and other tools (Blood sample) will be used later.
That's my update.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
See, you are one with a plan. You've done your research. You know there is a much bigger picture than just taking some abx and miserable. You will change that plan, adjust that plan, anything to help yourself.
Someone questioned your protocols in an earlier posts I was reading. It's just so much more complicated for those of us experienced to tell others:
A+B-D+E-divided+F=success!!!!!!!!!! If one of us could patent the formula we would be rich.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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seekhelp
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posted
Good luck MB. I wish you the best.
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djf2005
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posted
Good luck Mike, I know that your diligence will pay off. Keep at it.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Thanks for the update. I'd stop abx two weeks prior to the Bionic.
EMF's were a problem in the beginning for me when I returned from Dobel. I bought a Philip Stein watch that counter-acts EMF's and haven't take it off except to shower since I bought it two days after I returned.
It took almost a year with the Bionic to reach remission. And, as you know, I did lots of detox along the way with it. Good luck!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
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posted
Chemet is the prescription version of Chelex. It's used for heavy metal toxicity, especially lead.
Where did you buy the watch Six? How did you know that EMF's were an issue for you?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
sparkle7
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Member # 10397
posted
Good luck, Metallic Blue!
I'm rooting for you! I hope you can come out of all of this illness & treatments someday soon.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I bought it in Las Vegas, LOL! You can buy them at their website though ... and on the website I believe they have listings of jewelry stores that carry them.
Interestingly, part of their sales pitch is doing muscle testing in the store. I saw the muscle testing on my husband using a cell phone that was on but not in use with and without the watch and was amazed. I bought it on the spot. This was two or three days after I returned from Germany.
I became sensitive when I started Bionic 880 treatment. I think that the treatment is doing things on the "physical" level (as in physics, not chemistry). That change made me feel strange when I was around heavy EMF's.
I am okay in a place that has wireless internet, but if someone is near me with a computer working off the wireless I can tell their wireless is on .... ie, my daughter turns her wireless on at work and I feel bad if she's next to me at home and has forgotten to turn it off .... not nearly as bad as I used to, now it's just a little energy drain.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
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Interesting. I'll wait to see if I react. As far as I know I've never reacted differently from the day I got sick until now. When I travel, it also didn't change.
I'll see what the Bionic dose. I do know the Tetracycline is causing me to still experience die-off today. It's Thursday, 9 days in, so only 3 days left until I feel better. (That's the prediction). Then Erica will arrive, and I'll begin therapy with her.
The Infusions may be an issue since it's not usual for physicians to be helpful with this type of thing. I'll see if my own N.P. is willing to help.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
When I returned I didn't have the infusions. I took magnesium, burbur, drank a lot of water and used coffee enemas. Infusions would be best though. No telling how much help they really were especially since they had zinc and I needed KPU.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Summary of Events: Treatment works, but it's not going to solve all your problems overnight. It takes work, it takes a lot of sessions (More than 5). I did 13 and I only made it to about 40-45%, and I was at 30-35% when I began. I don't know how it works, but it does.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
MB, How old are you? Have you satisfied yourself as to the origin of your high mercury/lead? You mentioned a low vitamin D, I didn't have time to read the whole thread (longest one I've seen, btw) but have you tried correcting that?
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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METALLlC BLUE
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quote:Originally posted by DoctorLuddite: MB, How old are you? Have you satisfied yourself as to the origin of your high mercury/lead? You mentioned a low vitamin D, I didn't have time to read the whole thread (longest one I've seen, btw) but have you tried correcting that?
1: 33 2: Yes, a lot of chelation over a year. 3: Stopped Vit D, makes me feel sick and the sick feeling does not resolve no matter how long I stay on it.
I am feeling better, and I am stable at 35-40% without antibiotics. The next step is killing these little bastards that remain.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
But what was the origin of the heavy metals? Amalgams? Tainted groundwater? Proximity to smelting operaton? Chelation can help, but you must halt ongoing exposure.
I would posit that the low vitamin D is related, and understanding why you get sick when you take it (do you also get sick when you go out in the sun?) might help you find a way to get your level up without getting sick.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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METALLlC BLUE
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Member # 6628
posted
I have news. Between my last response on Marchy 7th, I had been continuing Rife therapy using an EMEM3D2 machine at various frequencies. I have recorded and charted every single session in a chart as well as a one page write up. Rife therapy I believe hold benefits, but I believe that depending where you are in your illness, the type of power you should use makes all the difference.
For someone who is just beginning, an EMEM3D2 might be key, if they've done minimal antibiotics, and want to start Rife.
For someone who has treated Lyme an c-infections for nearly a decade with heavy duty antimicrobials, herbs, and 30,000 dollars later worth of therapy, a high powered Coil Machine is the way I'm going to go.
I'm awaiting for my order to be filled with John Stoller, but in the meantime I decided to add one varible to my routine. Since I was at baseline, it couldn't hurt.
[04-24-11] - Sunday
I began taking a cheap OTC product called MSN, which stands for Methylsulfonylmethane (MSM) is an organosulfur compound. The organic sulfer component does not cause allergies or side effects but is said to have profound anti-inflammatory effects, reduce allergies, reconcile Fibromyalgia type soft connective tissue pain, as well as treating severe athritis. The dose is extremely crucial as most people who use this supplement only take small amounts. Initially only 2 grams should be used once or twice a day, then as time goes on and a clinical response is see thru improvements, more is added until 4-8 grams is commonly taken. Some severe illnesses respond to doses as high as 60 grams. Fortunately, the supplement is dirt cheap and can be purchased in bulk. I bought 2.2 lbs of the organic crystals for 20 dollars. Given my reaction, let's hope it's followed by improvements in key areas.
I began taking MSM Sunday Morning at 2grams in the morning. I repeated the same on Monday. By Monday evening I started have excruciating headhaces and had to take pain medications (Ultram).
Here are the notes I took while it happened:
[04-25-11] - Monday
I laid in bed all night awake, even with large doses of Ativan, Sleep Aids, and Ambien. I had chills, fever, sweating my skin hurts to touch, my eyes are sensitive to light, and my ears are sensitive to sound. I have a serious migraine that is not responding to high dose Ultram, a prescription pain medication. It feels like the Flu multiplied x 10.
It is not a flu however. All my muscles ache and throb and walking on my joints or using my arms creates a poping sound, combined with arthritic pain. Clearly this is a Herxheimer reaction. I performed Rife therapy yesterday. MSM) is an organo-sulfur compound. The organic sulfer component does not cause allergies or side effects but is said to have profound anti-inflammatory effects, reduce allergies, reconcile Fibromyalgia type soft connective tissue pain, as well as treating severe athritis. The dose is extremely crucial as most people who use this supplement only take small amounts and the purity is not usually know. Initially only 2 grams should be used once or twice a day, then as time goes on and a clinical response is see thru improvements, more is added until 4-8 grams is commonly taken.
Some severe illnesses respond to doses as high as 60 grams. Fortunately, the supplement is dirt cheap and can be purchased in bulk. I bought 2.2 lbs of the organic crystals for 20 dollars. Given my reaction, let's hope it's followed by improvements in key areas. The product I bought I confirmed was in-fact 99.95 pure Methylsulfonylmethane. I wanted no added ingredients and no fillers and I found someone who had the perfect product.
[04-26-11] - Tuesday:
Alright, here is what I presume is happening. I took a shower last night, but I had to hold the wall. Everything was pinning and "heavy." I cleaned up, and immediately I began profusely sweating.
All night long I saturated my clothing and bed sheets and pillows. I changed them over 15 times each. This pattern of symptoms is associated with a parasitic infection similar to Malaria. It's found here in New England in Ticks, and produces very similar symptoms. Upon killing it, it too produces a die-off reaction. In other words, if you treat it, it makes you must must sicker for a few days during early therapy before improvements take place.
The next issue is Bartonella and Lyme diease. I've never had a strong reaction to antimicrobial medications like this except for the antibiotic BACTRIM and IV- Vancomyin, which is given in the vein.
[04-27-11] - Wednesday
Now, my joints don't hurt and aren't stiff like there were, but I am still sweating and feverish. I still have muscle aches and mild fatigue but the worst is over for now -- until the next dose of MSM kicks in. Instead of taking a break today, I took the same dose of medication from yesterday. I'll tough it out. I won't die, so it's a good idea if I want to get to the other side. I won't be able to do my Rife treatments, or Ride the exercise Bike or do any type strenous activity which sucks.
This is key information for people to consider, as I never provide reports until I'm 100% confident they are having a strong noticeable effect. Whether that effect leads to improves, I don't know. That's really the key issue, but these preliminary results are a start.
[ 04-28-2011, 10:17 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Any chance you have a detox pathway defect, i.e., can't detox or process sulfur?--thus the cause of these symptoms?
I hope it is a herx reaction instead and that you continue to improve!
Thanks for the update--always interesting info--look forward to reading more updates as you go along.
May it bring the relief you seek!
Posts: 648 | From northeast | Registered: Feb 2009
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METALLlC BLUE
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posted
[04-27-11] - Wednesday Continued
The chances of it being a detox issue are extremely slim since I've never problems with Detoxification and I've used Sulfur medications.
I also took my morning dose of MSM and I'm still continuing to improve. Also, MSM has never shown to cause side effects of significance even in people with multiple chemical sensitives or people who had "sulfa" "sulfite" allergies. I took a nap and didn't sweat once during the naps.
I'm able to move around more, I have more energy, and I can easy do some light task if I wanted, such as clean up my kitchen, or fold some laundry.
I'm not doing these things however, my body needs time to recover.
[ 04-28-2011, 10:18 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
MB, that's wonderful news and definitely promising!
I will keep MSM in mind and ask my child's LLMD if he recommends it for children.
I wish you continued success!!!
Posts: 648 | From northeast | Registered: Feb 2009
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METALLlC BLUE
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Member # 6628
posted
If you're really interested then see if you can get this book at the local library or find it used real cheap. It'll tell you everything to do. The Miracle of MSM:The Natural Solution for Pain [Paperback]
Again, the issue appears to be does. Many people use MSM in joint supplements, but the amount must be significant and pure to meet medicinal needs.
Remember, this is all preliminary. Saftey is solid, supplment is dirt cheap especially when bought in bult.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
[04-28-11] - Thursday
All night long I saturated my clothing and bed sheets and pillows. I changed them over 15 times each. This pattern of symptoms is associated with a parasitic infection similar to Babesia in my opinion.
I suspect the immense onslaught of sulfur attacked Bartonella, and thus Babesia surfaced. My reason to suspect this is on [04-27-11] I woke up, still tired but had more energy. I immediately got up and started doing things, but I made sure not to overdo it. This energy increase and decrease a wide range of symptoms signals this probability. I woke up today, and the same exact pattern took place. I am coughing a lot, breathing is more difficult, and the sweating is profuse and to the point where I would literally call it "insane." I also was running fevers of 100-101F on Tuesday
I'm going to attack the Babesia with my Rife Machine and see if a die-off response takes place. I will hit it hard with over 1 hr of therapy.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Wow, MB,
I hope MSM is the answer for you. Best of luck
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Since the Babesia has clearly surfaced and I've done almost 1 1/2 years of Babesia therapy, does anyone have any suggestions? I've never used Artemisinin, and I have a large supply of Malarone which appears to have suppressed it previously but didn't kill it.
Babesia: Ideas to kill it?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
04-29-11 -- Friday
Interesting news. I may not have to worry about the Babesia for right now. It all depends on if this pattern continues: I only had to change my clothing 3 times last night. It appears things are slowing down. it's 4:30 a.m. right now and my body is telling me "Sorry Bro, but it's time to get out of bed." So here I am. Good news. I went to bed at 8:30 p.m. so it makes sense that I'm up so early. This is all good news, very good. I hope it continues.
Here is my latest plan of attack if all goes well:
I'm using my Rife machine on the same cycle now that I have been (Every 48hr). I rifed for Babesia for 1hr yesterday, and I'm still taking 2gm MSM daily. This organic sulfur is ****ing off a lot of the microorganisms in my system. I can "feel" them antagonizing my immune system. It's like a war inside. They seem to be losing finally, but whether they lose just a battle or lose the war is an entirely different story.
In 2 weeks, I'll increase the dose of MSM to 4gm per day, and every 2 weeks after, another 2 gm until I see the desired results.
Once I get my Coil Machine from John -- which I will get -- I'll then kick the **** out of the remaining buggers.
I may pull back on the MSM if I think it's suppressing some of the infections. If that is the case, I'll cycle MSM at a high dose until I have another Herxheimer Reaction. The moment the reaction peaks, I'll stop the med (MSM).
I'll keep Rifing, but will rest without MSM for 3 weeks, then add Tetracycline alone at 2g. I'll use that until the Herxheimer peaks, and stop that and then rest for 4 weeks, then I'll repeat the MSM.
All in between this, I'll be Rifing. I am certain this is the best routine I've ever come up with.
It follows all the patterns I've been talking about. It incorporates my theory of weakening the immune system (Higher intensity aerobic exercise), pulsing, deep penetration therapies to attack deep tissue, ligaments and other sequestered sites, as well as immuno-modulation, thus decreasing the inflammatory response systematically. The exercise will also be pulsed in order to coax the infection out of hiding. When the immune system is suppressed, the infection takes the opportunity, a bit like bait and switch.
I'll slam the high intensity aerobics during the short periods prior to and during Antibiotic use and MSM use to get optimal kill in tissues. The Rife will then clean up.
Co-infections will be dealt with as necessary in the same format
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
The effect of methylsulfonylmethane on the experimental colitis in the rat. Amirshahrokhi K, Bohlooli S, Chinifroush MM. Source
Department of Pharmacology, School of Medicine, Ardabil University of Medical Sciences, P.O. Box 56197, Ardabil, Iran. Abstract
Methylsulfonylmethane MSM, naturally occurring in green plants, fruits and vegetables, has been shown to exert anti-inflammatory and antioxidant effects. MSM is an organosulfur compound and a normal oxidative metabolite of dimethyl sulfoxide. This study was carried out to investigate the effect of MSM in a rat model of experimental colitis. Colitis was induced by intracolonic instillation of 1ml of 5% of acetic acid. Rats were treated with MSM 400mg/kg/day, orally for 4days. Animals were euthanized and distal colon evaluated histologically and biochemically. Tissue samples were used to measurement of malondialdehyde MDA, myeloperoxidase MPO, catalase CAT, glutathione GSH and proinflammatory cytokine TNF-α and IL-1β levels. Results showed that MSM decreased macroscopic and microscopic colonic damage scores caused by administration of acetic acid. MSM treatment also significantly reduced colonic levels of MDA, MPO and IL-1β, while increased the levels of GSH and CAT compared with acetic acid-induced colitis group. It seems that MSM as a natural product may have a protective effect in an experimental ulcerative colitis. Copyright � 2011. Published by Elsevier Inc.
-----------------Oxidative Stress
2: Cell Mol Biol Noisy-le-grand. 2011 Feb 12;57 1:62-9.
Effect of topical application of methylsulfonylmethane MSM, EDTA on pitting edema and oxidative stress in a double blind, placebo-controlled study. Tripathi R, Gupta S, Rai S, Mittal PC. Source
University of Allahabad, Department of Biochemistry, Allahabad, India. Abstract
No pharmacological treatment exists for lower extremity pitting edema, characterized by inflammation, found in chronic venous insufficiency. Treatment with EDTA, an effective metal chelator, was explored because it can modulate free calcium and iron and prevent further free radical production. However, EDTA may not effectively penetrate the cell membrane, hence methylsulfonylmethane MSM, reported to facilitate transmembrane transport, was added. The effect of topical application of a lotion containing MSM+EDTA was assessed in two phases of a double blind, placebo controlled clinical trial. In phase 1, patients having swelling in the lower extremities were randomly distributed to receive the MSM+EDTA lotion or a placebo vehicle alone. In the second phase, patients were given MSM as placebo followed by MSM+EDTA lotion for 2 weeks. The circumference of calf, ankle and foot for both legs were found to decline significantly after 2 weeks of application of the lotion/ but not placebo, and total antioxidant capacity FRAP and lipid peroxidation products MDA, assayed in blood, showed decline in oxidative stress. Application of MSM alone increased the swelling. Thus EDTA+MSM offers an efficacious treatment for lower extremity pitting edema, through reduction in oxidative stress.
-----------------Useful In Cancer Therapy
3: Methyl sulfone induces loss of metastatic properties and reemergence of normal phenotypes in a metastatic cloudman S-91 M3 murine melanoma cell line.
Caron JM, Bannon M, Rosshirt L, Luis J, Monteagudo L, Caron JM, Sternstein GM. Source
Department of Cell Biology, School of Medicine, University of Connecticut Health Center, Farmington, Connecticut, USA. [email protected] Abstract
BACKGROUND:
The most deadly form of cancer is not lung or colon, breast or prostate; it is any cancer that has become metastatic. Mortality due to metastatic melanoma, one of the most aggressive and deadly cancers, has increased steadily over the last several decades. Unfortunately, the arsenal of chemotherapeutic agents available today is most often unsuccessful at extending and improving the life expectancy of afflicted individuals. We sought to identify an effective and nontoxic agent against metastatic melanoma.
METHODOLOGY/PRINCIPAL FINDINGS:
We chose to study Cloudman S-91 mouse melanoma cells sub-clone M3, CCL53.1 because these cells are highly aggressive and metastatic, representing one of the deadliest types of cancer. Melanoma cells also had an experimental advantage because their morphology, which is easily monitored, relates to the physiology of metastatic cells and normal melanocytes. We chose to test methyl sulfone -Methylsulfonylmethane- as a chemotherapeutic agent for two reasons. Because of its chemical structure, we speculated a potential anti-cancer activity by targeting microtubules. Equally important, methyl sulfone has a well-established safety profile in humans. Surprisingly, we found that malignant melanoma cells exposed to methyl sulfone demonstrated the loss of phenotypes characteristic of malignant cells, and the reemergence of phenotypes characteristic of healthy melanocytes. Briefly, over time methyl sulfone induced contact inhibition, loss of ability to migrate through an extracellular matrix, loss of anchorage-independent growth, proper wound healing followed by contact inhibition, irreversible senescence followed by arborization with melanosomes in arbors as seen in normal melanocytes.
CONCLUSIONS/SIGNIFICANCE:
Methyl sulfone may have clinical potential as a non-toxic agent effective against metastatic melanoma. Additionally, methyl sulfone has promise as a tool to explore molecular mechanisms of metastatic transformation as well as fundamental processes such as cell migration, contact inhibition, wound healing and cellular senescence.
The anti-inflammatory effects of methylsulfonylmethane on lipopolysaccharide-induced inflammatory responses in murine macrophages.
Kim YH, Kim DH, Lim H, Baek DY, Shin HK, Kim JK. Source
Center for Efficacy Assessment and Development of Functional Foods and Drugs, Hallym University, Korea.
Methylsulfonylmethane MSM, also known as dimethyl sulfone and methyl sulfone, is an organic sulfur-containing compound that occurs naturally in a variety of fruits, vegetables, grains, and animals, including humans. In the present study, we demonstrated the anti-inflammatory effects of MSM in lipopolysaccharide LPS-stimulated murine macrophages, RAW264.7 cells. MSM significantly inhibited the release of nitric oxide and prostaglandin E 2 by alleviating the expression of inducible nitric oxide synthase and cyclooxygenase-2 in LPS-stimulated RAW264.7 cells. Furthermore, the levels of interleukin-6 and tumor necrosis factor-alpha were decreased by MSM treatment in cell culture supernatants.[/b] Further study indicated that the translocation of the p65 subunit of nuclear factor NF -kappaB to the nucleus was inhibited by MSM treatment in LPS-stimulated RAW264.7 cells, in which it helped block degradation of inhibitor of NF-kappaB. In addition, in vivo studies demonstrated that topical administration of MSM at 500-1250 microg/ear resulted in similar inhibitory activities in 12-O-tetradecanoylphorbol 13-acetate-induced mouse ear edema. Collectively, theses results indicate that MSM inhibits LPS-induced release of pro-inflammatory mediators in murine macrophages through downregulation of NF-kappaB signaling.
-----------------Skin Inflammation & Vasularity
6: J Cosmet Dermatol. 2008 Mar;7 1 :8-14. Combined effects of silymarin and methylsulfonylmethane in the management of rosacea: clinical and instrumental evaluation.
Berardesca E, Cameli N, Cavallotti C, Levy JL, Pi�rard GE, de Paoli Ambrosi G. Source
San Gallicano Dermatological Institute, Rome, Italy. [email protected]
OBJECTIVE:
This study aims to evaluate a topical treatment based on silymarin/methylsulfonilmethane S-MSM to improve erythematous-telangiectactic rosacea. METHODS:
Forty-six patients affected by stage I-III rosacea entered this double-blind, placebo-controlled study. Subjects were treated for 1 month. Clinical and instrumental evaluations were done at baseline, after 10 and 20 days, and at the end of the study. Itching, stinging, erythema, and papules were investigated clinically as well as hydration and erythema instrumentally with capacitance and color measurements. RESULTS:
A statistically significant improvement was observed in many clinical and instrumental parameters investigated P < 0.001. In particular, improvement of skin redness, papules, itching, hydration, and skin color occurred. CONCLUSIONS:
The combination of silymarin and S-MSM can be useful in managing symptoms and condition of rosacea skin, especially in the rosacea subtype 1 erythemato-telangiectatic phase. The action can be considered multicentric and multiphase because of the direct modulating action on cytokines and angiokines normally involved and up-regulated in the case of such skin condition.
Randomised, Double-Blind, Parallel, Placebo-Controlled Study of Oral Glucosamine, Methylsulfonylmethane and their Combination in Osteoarthritis.
Usha PR, Naidu MU. Source
Department of Clinical Pharmacology and Therapeutics, Nizam's Institute of Medical Sciences, Hyderabad, India.
OBJECTIVE:
Glucosamine, classified as a slow-acting drug in osteoarthritis SADO, is an efficacious chondroprotective agent. Methylsulfonylmethane MSM, the isoxidised form of dimethyl-sulfoxide DSMO, is an effective natural analgesic and anti-inflammatory agent. The aim of this study was to compare the efficacy and safety of oral glucosamine Glu, methylsulfonylmethane MSM, their combination and placebo in osteoarthritis of the knee.
PATIENTS AND DESIGN:
A total of 118 patients of either sex with mild to moderate osteoarthritis were included in the study and randomised to receive either Glu 500mg, three times daily for 12 weeks. - Notice the higher dose of 1,500mg of MSM, aka 1.5GM Patients were evaluated at 0 before drug administration, 2, 4, 8 and 12 weeks post-treatment for efficacy and safety. The efficacy parameters studied were the pain index, the swelling index, visual analogue scale pain intensity, 15m walking time, the Lequesne index, and consumption of rescue medicine.
RESULTS:
Glu, MSM and their combination significantly improved signs and symptoms of osteoarthritis compared with placebo. There was a statistically significant decrease in mean +/- SD pain index from 1.74 +/- 0.47 at baseline to 0.65 +/- 0.71 at week 12 with Glu p < 0.001. MSM significantly decreased the mean pain index from 1.53 +/- 0.51 to 0.74 +/- 0.65, and combination treatment resulted in a more significant decrease in the mean pain index 1.7 +/- 0.47 to 0.36 +/- 0.33; p < 0.001. After 12 weeks, the mean swelling index significantly decreased with Glu and MSM, while the decrease in swelling index with combination therapy was greater 1.43 +/- 0.63 to 0.14 +/- 0.35; p < 0.05 after 12 weeks. The combination produced a statistically significant decrease in the Lequesne index. All treatments were well tolerated.
CONCLUSION:
Glu, MSM and their combination produced an analgesic and anti-inflammatory effect in osteoarthritis. Combination therapy showed better efficacy in reducing pain and swelling and in improving the functional ability of joints than the individual agents. All the treatments were well tolerated. The onset of analgesic and anti-inflammatory activity was found to be more rapid with the combination than with Glu. AKA MSM is key and works fast It can be concluded that the combination of MSM with Glu provides better and more rapid improvement in patients with osteoarthritis.
-----------------Systemic Distribution Of MSM Efficient
8: J Agric Food Chem. 2007 Feb 7;55 3:1033-8.
Pharmacokinetics and distribution of [35S]methylsulfonylmethane following oral administration to rats.
Magnuson BA, Appleton J, Ames GB. Source
Burdock Group, 888 17th Street N.W., Suite 810, Washington, D.C. 20006, USA. [email protected] Abstract
Methylsulfonylmethane MSM is a sulfur-containing compound found in a wide range of human foods including fruits, vegetables, grains, and beverages. More recently, it has been marketed as a dietary supplement worldwide. The objective of this study was to evaluate the pharmacokinetic profile and distribution of radiolabeled MSM in rats. Male Sprague-Dawley rats were administered a single oral dose of [35S]MSM 500 mg/kg, and blood levels of radioactivity were determined at different time points for up to 48 h. Tissue levels of radioactivity at 48 and 120 h and urine and fecal radioactivity levels were measured at different time points for up to 120 h following [35S]MSM administration to rats. Oral [35S]MSM was rapidly and efficiently absorbed with a mean tmax of 2.1 h, Cmax of 622 microg equiv/mL, and AUC0-inf of 15124 h.microg equiv/mL. The t1/2 was 12.2 h. Soft tissue distribution of radioactivity indicated a fairly homogeneous distribution throughout the body with relatively lower concentrations in skin and bone.Approximately 85.8% of the dose was recovered in the urine after 120 h, whereas only 3% was found in the feces. No quantifiable levels of radioactivity were found in any tissues after 120 h, indicating complete elimination of [35S]MSM. The results of this study suggest that [35S]MSM is rapidly absorbed, well distributed, and completely excreted from the body.
-----------------Safety
9: Food Chem Toxicol. 2007 Jun;45(6):977-84. Epub 2006 Dec 13.
Oral developmental toxicity study of methylsulfonylmethane in rats.
Magnuson BA, Appleton J, Ryan B, Matulka RA. Source
Burdock Group, 888 17th Street NW, Washington, DC, USA. [email protected] Abstract
Methylsulfonylmethane (MSM) is a metabolite of dimethyl sulfoxide, and occurs naturally at low levels in many foods. MSM has received wide attention as a dietary supplement to promote joint health. The objective of these studies was to determine the developmental toxicity potential of MSM when administered orally to pregnant rats during the period of major organogenesis and histogenesis. In a preliminary dose-finding study, distilled MSM microprill (i.e., microspherical pellets of MSM) was administered by oral gavage at dose levels of 0 (vehicle control), 50, 250, 500, and 1000 mg/kg/day to 8-9 sperm-positive female Sprague-Dawley rats/group/day on gestation days 6-20. No evidence of maternal or fetal toxicity was observed. For the definitive developmental study, four groups of 24-25 timed-bred primiparous female rats were administered 0, 50, 500, or 1000 mg MSM/kg/day via gavage on gestation days 6-20. Maternal feed consumption, body weight, body weight gain, uterus weight and corrected body weight/body weight gain were unaffected by treatment. No evidence of maternal toxicity, and no significant differences in litter viability, litter size, or litter body weight were detected. Fetal evaluations failed to show any biologically significant increase in the incidence of anomalies in the MSM treated groups, and no malformations were seen in any of the fetuses. No evidence of fetal mortality, alterations to growth, or structural alterations were observed in the fetuses of dams administered 50-1000 mg/kg/day. Therefore, under the conditions of this study, the no-observed-adverse-effect level (NOAEL) for maternal and developmental toxicity was 1000 mg/kg/day.
10: NMR Biomed. 2005 Aug;18(5):331-6. Dimethyl sulfone - Methylsulfonylmethane in human cerebrospinal fluid and blood plasma confirmed by one-dimensional (1)H and two-dimensional (1)H-(13)C NMR.
Engelke UF, Tangerman A, Willemsen MA, Moskau D, Loss S, Mudd SH, Wevers RA. Source
Radboud University Nijmegen Medical Centre, Laboratory of Pediatrics and Neurology, NL-6500 HB Nijmegen, The Netherlands. Abstract
(1)H-NMR spectroscopy at 500 MHz was used to confirm that a previously unidentified singlet resonance at 3.14 ppm in the spectra of cerebrospinal fluid and plasma samples corresponds to dimethyl sulfone (DMSO(2)). A triple resonance inverse cryogenic NMR probe, with pre-amplifier and the RF-coils cooled to low temperature, was used to obtain an (1)H-(13)C HSQC spectrum of CSF containing 8 microM (753 ng/ml) DMSO(2). The (1)H-(13)C correlation signal for DMSO(2) was assigned by comparison with the spectrum from an authentic reference sample. In plasma and CSF from healthy controls, the concentration of DMSO(2) ranged between 0 and 25 micromol/l. The concentration of DMSO(2) in plasma from three of four patients with severe methionine adenosyltransferase I/III (MAT I/III) deficiency was about twice the maximum observed for controls. Thus, DMSO(2) occurs as a regular metabolite at low micromolar concentrations in cerebrospinal fluid and plasma. It derives from dietary sources, from intestinal bacterial metabolism and from human endogenous methanethiol metabolism.
[ 04-29-2011, 06:51 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
There are literally hundreds of studies demonstrating this. The issue is "dose", not so much duration since it works quickly in most people.
High dosing is necessary.
For those interested in doing further research in credible medical journals, please go to pubmed.gov and type in: Methylsulfonylmethane
This substance no only appears to be effective in all the areas I pointed out, but also as a solvent in industry. It's ability to help transport substances across membrane tissues may be useful in other applications, including with the use of antibiotics.
[ 04-29-2011, 06:53 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Individuals who have CBS and/or SUOX methylation cycle genomic variants should not use MSM. This is because the CBS and SUOX genes influence the body's ability to process and detoxify sulfur compounds. If these genes impair the function of the enzymes sufficiently, then sulfur compounds become toxic chemicals even in small amounts, and can actually lead to metabolic crisis.
I have experienced such issues with a variety of sulfur compounds, including many of the foods that are natural sources of MSM, and I have a CBS genetic variant. My reactions are anaphylactoid if exposure levels are high enough... Yes, these reactions could be fatal. I can't call them anaphylaxis because they are not allergic, they are metabolic intolerances. But the symptoms are systemic and life-threatening.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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METALLlC BLUE
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Member # 6628
posted
Well, I guess people in Razzle's boat will need to watch out, but for me the risk to benefit was to go for it, especially with all the toxic drugs I'd taken. The first 48 hours were pure hell. I was told to expect that for a very long standing illness. I felt like I was dying, so anyone considering that should be aware that you may feel like hell too, as opposed to literally dying. Again, risk to benefit. You have to decide for yourself and talk to your physician.
So here is an update:
Friday - [04-29-11]
More energy. Felt well enough to do morning chores, ride the exercise bike, go for a drive, and laundry. Brushed my teeth, showered, did dishes.
Aches and pains are less thus far. It is only 10:45 a.m. here. I've been awake for 6 hours and going strong.
I have only been for a drive twice in the last 6 months, and today was one of them.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Wow! I'm so excited for you that this may be the key. Can't wait to hear ongoing updates!
Posts: 2541 | From Northeast | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Ongoing updates so far have been positive. As I increased the dose, I did not have the repeat flu-like symptoms but I've gradually felt a reduction in pain, inflammation, and an increase in energy and mood.
It's still too early to confirm that this isn't a placebo effects or a coincidence, but I will continue to update.
If this pattern continues into the next month, with a steady uphill pattern, I'll be inclined to recommend it. For now, I can only recommend researching the topic for oneself.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Sunday - [05-15-11]
It has been about 3 weeks since I initially began at 1gm. I climbed each week about 1 to 2 grams, until I reached 5 grams last week.
The first few days were quite distressing, with massive Detoxification. It's the type of symptoms you might experience withdrawling from a narcotic, with wide spread systemic aches, fever, chills, fatigue, and a lot of pain.
After that, I improved around 2 g, and reached 45% at my maximum, which is significant, given that is the best I reached with antibiotics orally.
However, as the dose increased beyond 3g, symptoms gradually worsened, with feelings of fatigue, insomnia, and just general malaise. The feelings you might have following a night of drinking too much alcohol.
Here is my theory. While the MSM has a potent inhibitory effect on the immune system, it's also extremely potent at producing Glutathione in the liver. This causes the body to try to detox from typical things it comes in contact with or stores during therapy from Lyme or just general disease.
The detoxification process can only move forward at a very particular speed for each individual, so the more MSM I added, the more of a toxic burden my body was attempting to remove, and it could not keep pace, thus symptoms worsened.
Another piece of evidence that leads me to this conclusion is that I smell extremely bad -- body odor, especially after working out. Previously prior to the MSM I never smelled, but now it's potent. I suspect my body is removing the toxins through pores, especially where major lymphnodes are present under the arms and groin. These toxins must be have fatty content or other be organic, because the bacteria are feeding on it, causing the smell.
So, that is my thoughts. I will cut back, and I'm considering a Tetracycline combo in a week. I will add a high dose of Tetracycline, probabl 2g or higher per day, for about 2 weeks. When the Herxheimer hits, I will immediately cut the drug, and rest for a few days and detox. I will then either repeat the MSM at a low dose, or possibly a much higher dose. We'll see what happens. Pushing appears to be helpful in seeing where to take the therapy but not so hard that it leads to overwhelming the system.
So, it clearly is powerful, but whether it can lead to significant progress remains to be seen. Temporary progress has been seen which can not be attributed to any other therapy.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
metallicablue, have you tried the salt/vit c protocol? It has helped so many people. I'll start tomorrow and I will post result. It is a long treatment though but conventional treatment are eternal. Take care
Posts: 37 | From maryland | Registered: Mar 2011
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metallicblue, have you tried the salt/vit c protocol? It has helped so many people. I'll start tomorrow and I will post result. It is a long treatment though but conventional treatment are eternal. Take care
Posts: 37 | From maryland | Registered: Mar 2011
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quote:Originally posted by METALLlC BLUE: Sunday - [05-15-11]
Another piece of evidence that leads me to this conclusion is that I smell extremely bad -- body odor, especially after working out. Previously prior to the MSM I never smelled, but now it's potent. I suspect my body is removing the toxins through pores, especially where major lymphnodes are present under the arms and groin. These toxins must be have fatty content or other be organic, because the bacteria are feeding on it, causing the smell.
I came across a blog post the other day which mentioned that sulfate may feed candida, and that one possible sign of this might be bad body odor.
It's just shy of half way down the article. Look for the paragraph that starts with "One researcher..."
Posts: 18 | From Planet Earth | Registered: May 2011
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METALLlC BLUE
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Member # 6628
posted
I stopped smelling a few days after doing a lot of exercising and drinking filtered water with trace minerals added.
My immune system definitely turned out. I've never had Candida problems, I was tested via stool sampling.
I'm in my second week of Tetracycline therapy combined with MSM. I should notice a hit within a few days as the Herxheimer reaction appears.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Wow. You had this for 20 years. I would have shot myself. No, better yet, I would have shot myself while jumping from a bridge.
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METALLlC BLUE
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quote:Originally posted by ks90: Wow. You had this for 20 years. I would have shot myself. No, better yet, I would have shot myself while jumping from a bridge.
Trust me, I thought about it a lot. I've had it for even more than 20 years, it's just that I only became "significantly" sick for a period of time at age 9. Prior to that I had a lot of problems too but I was young and my parents and doctors never attributed it to my current condition.
Dr. H & L believe I was 18 months old when it began given the reports from family. Apparently I went from being a very calm and loving child to violent and manic. They told me I would chew furniture and scream.
The key to my survival has been a combination of luck, lucid periods of intelligent decisions on my part, and my unbreakable promise that I made to myself.
At age 17, I had been in and out of psychiatric units twice. I remember standing in the shower and this looming depression was consuming me. I was bleeding from my rectum, my heart was throbbing, my head was throbbing and faint, my eyes sensitive to light and my skin felt like I was being burned alive. Everything in my body was failing. The inflammatory response caused by the infections was so chronic that one autoimmune disease after another was appearing.
In that shower, that night, I asked myself: It's time to make a clear decision and whatever the outcome, I will follow thru no matter how much pain or hard work is involved. One side of the equation was death, the other life. If I chose death, there was no possible way for me to find a solution, and curiosity for me is like breathing is to most people. I had to do it, I had to know. Yet, the overwhelming suffering was so profound and disturbing that I could not keep going. I had to be kind to myself. If I did end it, was I doing what was right? Was ending my suffering fair? After careful thought, I felt it was the best option under the circumstances if I could not obligate to the other. I chose to stay alive and see the process thru to the bitter end. I would let the disease kill me rather than take my own life. In that decision -- that promise -- I knew it would be possible to defeat the disease, but I also knew there was no guarantee, since I didn't even know what I had. I wasn't even diagnosed correctly yet. I not only needed to find out, but even if I did, could it be cured?
It took another 7 years before I was diagnosed correctly with Lyme, and another 8 years after that before the co-infections were discovered. So, I survived on a promise for 15 years.
Had the infection taken hold of parts of my mind that prevented me from considering the possibilities, I just may very well have ended my life and it wouldn't have been my fault for it is the only possible way I would make that decision, and I suspect it's often why other people end their lives too. Foresight. If I lacked the ability to imagine a future where the problem was solved, then that would be all.
For those who made the other decision, I completely understand and think no less of them for it.
Today I still have not cured the infection(s). I still don't know if I will, but I won't stop until I find out.
For anyone considering one choice or the other, it's all on you. My only advice is to write notes to yourself over a period of months to find out if "you" are still inside there. I wrote diary entries because I knew the personality changes, memory loss and other abnormalities were like gaps in time. I could see myself at times doing things and sayings things to people that I know inside that I could never do or say and still live with myself. Yet, I did them.
Not only was the body broken, but so was the mind, so to make this decision, you've gotta have an idea of what the true you really wants.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Update: MSM did not work, nor did additional cycles of Tetracycline. The infection has adapted.
Rife therapy with the EM machine was a failure after over 100 sessions (carefully documented HERE)
It's time to move to the IV. I've decided to return to Dr. D in Boston, given he and I discussed and previously worked on using IV antibiotics. I had not returned to the IV for a lot of reasons, 1: Trauma from the last septic process that nearly killed me, and 2: I felt I hadn't explored the lower risk options, although those lower risk options had almost no science to support them, the risk to benefit was appropriate at the time. I've dealt heavily with Co-infections under the care of Dr. H in NY, but Dr. D is affordable, takes my insurance, is willing to write the scripts after thorough debate and planning, and my primary at home will now be fully in the loop and capable of providing local care if anything goes arong. I also have a surgeon on hand for any line/inserts.
Now, it's IV time. I'm performing a number of activities and need your help:
1: Retesting via Igenex, complete panels for Lyme 5060, and the full Co-infection panel, as well as Bartonella Fish and Babesia Fish, and the CD57 that they now offer. 2: Local Retesting of blood work, including viral, bacterial, parasitic, fungal, and other forms of infection.
I need help choosing which tests to run through my local lab, including immunological testing, Gene testing or anything else that might be pertinent to giving me information.
Here is what I have listed so far:
Igenex
6050: Lyme Disease: Includes IFA, IgG and IgM Western Blots and PCR (whole blood and serum):
5090: Babesia, Ehrlichia - Anaplasma phagocytophila (HGE) or Human Monocytic Ehrlichia (HME), and Bartonella. IFA antibody tests: Babesia microti-#200, Ehrlichia: #203 Anaplasma phagocytophila (HGE) or #206 Human Monocytic Ehrlichia (HME), Bartonella - #285 and Babesia FISH-#640.
CD57 Test - It is expressed on both, natural killer (NK) cells and T lymphocytes.
Regular Lab:
Ehrlichia, Ehrlichia serologies & PCR
Bartonella Hensale & Quintana, Serological, cultures, or PCR
Tularemia, Serologies
Rocky Mountain Spotted Fever (IFA) & PCR
Relapsing fever serologic testing
Chlamydia Pneumoniae Serological testing & PCR
Mycoplasma Pneumonia PCR
Mycoplasma fermentans PCR
Toxoplasmosis polymerase chain reaction (PCR
Babesia Microtic Smear Serologic testing for antibodies against Babesia (both IgG and IgM) & PCR
Babesia Ducani Smear, Serologic testing for antibodies against Babesia (both IgG and IgM) & PCR
Viruses:
Cytomegalovirus CMV pp65 antigenemia test (IFA) and PCR & ELISA (Or IgG, IgM)
Human herpesvirus 6 & 7 (PCR or Serology)
HSV 1 and 2 IgG and HSV 1,2 Screen, IgM, EIA Antibody levels. If the HSV 1,2 Screen, IgM, EIA is positive, an HSV 1,2, IgM, IFA
Colorado Tick Fever (CTF) complement fixation & IFA
Epstein-Barr virus Serologic & Mono Spot
Coxsackie A and B (B more important) PCR or Serology
Immunological:
Cytokines IL-6 and TNF-alpha
chemokine CXCL13
Endocrine:
Testosterone: total testosterone with sex hormone-binding globulin (SHBG)
*What "specific" tests should be done for the Endocrine system or any other recommended tests? I.E. Serology, IgG/M, Smear, etc.
Information on IV supplies
I'll also need information on what type of IV line will be most effective for reducing complications. I do want to continue working out if possible (Biking) with the line, but I'll give up things if necessary. I'm thinking a chest port may be most appropriate, but I'd like to know what tools I'd use to cover it and protect it. I'd like to know the details about how it's maintained, who deals with it (nurse?) what, who, how, why, when, where basically.
IV Formulation Combinations
I'll then need help formulating an IV combination therapy that will be most potent based on my prior response to medications. I responded very well to Bactrim, Vancomycin, Tetracycline, Doxycycline and Malarone.
That's all I have to go on. There are still many drugs I have not tried, or drugs that work differently when taken via IV verse orally. So, combination therapies? Where to begin?
I'm not concerned about Detox and all the other supplements surrounding this process. I already know what to do on those fronts.
Additional concerns are that I developed bad allergic reactions to Vancomycin and "probably" Bactrim. So I need alternatives that work on the same mechanisms of the bacterium while using a different drug if possible, or combinations.
[ 07-05-2011, 03:06 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
MB, I'm glad you are posting your findings. I have been worried about you and I think you knew that I didn't agree with your rife protocol.
I'm glad you are stepping back and rethinking this whole BIG picture. I too last week had blood drawn and sent to Igenex.
$1600 worth of tests and gave them my credit card number. My primary Insurance is Humana and I know I'm going to have to fight and appeal process to get them involved. They will one way or another.
Medicare will also have something to say to Humana about paying their part. So I will fight that battle when it happens.
Humana doesn't know that I'm not the same insuree as 8-9 yrs ago. I backed down after losing my first appeal, too ill to fight and just accepted our paying. No more!!
Good luck with the regrular labs. Now they can find mycoplasma pn, HHV-6, EBV, CMV, c-reactive protein, thyroid including t3 t4 tsh and TPO AB, which shows if you have Hashimoto's, immune system attacking thyroid.
I was reading Amy Tan(famous author with Lyme) last night. They drew blood on her and intentionally sent if off to 5 different labs.
The results were all over the board. It was the TRUTH. Most of these labs are just about worthless unless they happen to have a good lab person actually using the tools and the work needed or the best trained to do this work.
It is really sad that WE are trying to find answers to very complicated situations and we must depend/rely on others to know how to do the job correctly.
It matters if I have mycoplasma pn. I have lyme, most likely bart and bart(soon to hopefully find those answers), so all these viruses that I test highly positive for are relevent to my body and health.
I don't want to hear the bu!!crap that many people have these simple viruses in their body and they aren't important. These people need to go back to medical school and get a real education on the NEW SUPER bacteria, protoza, parasites and viruses that are making our patients very ill.
Oh by the way if you are considering going to endocrine specialist. You must educate them also. You will need to educate every direction you turn.
That's okay because that is why we are here is to educate. But my new endocrine said I was on too much thyroid. She lowered my dose and it made me into one crazy woman.
She told me that the lower dose was correct and I keeded to see psyco doctor about my depression meds. She wanted me to see a specialist for each of my sx. HELLO????????????????
I'm blessed that I have a PCP that's been with me since 98-99 when this nightmare began. Yes, I ventured off and seen specialist here and there.
Found them to be ignorant or unwilling to learn. I've had 2 that got it....my eye doctor and my therapist, in 12+ yrs. All of the alternative type docs get it, mostly.
Never know I might go back to LLMD, but I do know it won't be for abx unless something is killing me bacterial wise.
I wish you the best. I hope you find some answers and can finally reach some degree of improvement.
Don't get rid of that rife machine. It might help you eliminate some of the smaller evils haunting you. You never say never.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Pam, Thank you for your response and experience. I've been thru all the same things -- like a lot of people here, so I can say I really relate. I'll just keep telling myself that somehow I'll work this out and find a way. The truth is though, I'm so tired. My attitude needs some serious adjusting if I want to keep my head up and stay motivated. Ironically it's pushing against the tide to force yourself to adjust your attitude of being helpless and hopeless when the situation really is that way. So be it though. Lie to yourself if it'll get you thru to the end, and that's where I am. It's a strange place to be.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
MB, I just ran across your post. All traetments have failed me. I'm thinking about going back to Dr. W for Bionic 880. First time, 5 treatments didnt' take me to health, but this time will try to run it longer and buy the machine. Any advice. My body is rejecting all medication and I'm nearly face down, bed ridden, my brains swimming so that I think I am loosing my mental capacity quickly.
Cried my eyes out tonight. Think I"m at the end and should "prepare" myself.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Metallic Blue, how do you continue. I think about ending it a lot, but I fear going to hell, and I have three beautiful daughters with chronic lyme. What would I teach them.
Lord help us all.
God bless you MB. I will pray for you tonight really hard. I don't pray enough. Tonight I will.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
I feel for you both - I have witnessed turn-arounds in hopeless cases here before - via stem cell injections, oxygen dives, the right meds or herbs or supplements.
Mary, I haven't read much about what you've gone through, but have you tried the herbal route? Any of the herbal remedies?
I'm a lighter case than you both, but still have felt stuck. I have experienced four breakthrough treatments where I have felt previously stuck, the latest being detoxing with FIR so I can start to handle chemicals again, as in touching materials and being around smells -
I think you need to keep asking and looking for what people try that you haven't tried yet.
Posts: 13116 | From San Francisco | Registered: May 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'm always open minded to the next healer and sure enough I got some great info Friday.
I looking forward to making some phone calls tomorrow morning. I'm not giving up, no way.
lymewreck, please don't think or write things like that. It is scarey to me to read when someone says they want to give up.
Don't know you, but I just don't want anyone in this situation to feel or have to think that way.
Don't lose hope. It's very hard work and everything is so expensive and many things are out of pocket expenses. Where there's a way there's a way.
I'm personally wearing alot of armour the last couple months but I have too to get thru what I know must be done. I'm truly blessed and only a messenger.
Robin, I know that word stuck. I'm stuck and don't know which way to go. But I'm going somewhere.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by lymewreck36: MB, I just ran across your post. All traetments have failed me. I'm thinking about going back to Dr. W for Bionic 880. First time, 5 treatments didnt' take me to health, but this time will try to run it longer and buy the machine. Any advice. My body is rejecting all medication and I'm nearly face down, bed ridden, my brains swimming so that I think I am loosing my mental capacity quickly.
Cried my eyes out tonight. Think I"m at the end and should "prepare" myself.
Mary
You can visit my post on Bionic therapy if you wish. It "seemed" to work, enough where I would continue if I had access that was easier. Search for my name and the subject "Bionic" and you'll find a post about preliminary results as well as a comparison of Rife to Bionic.
I went the Rife route using only one machine. It failed. This dose not reflect failure of the concept, just as the Bionic would not reflect failure if it worked for others but not myself.
Don't quit. Don't you want to see how the story ends? It's possible to solve this problem. Like I've said, if we can build planes, trains, computers and come up with some amazing ideas -- then we can solve this too, we just need to stick with it long enough.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by lymewreck36: Metallic Blue, how do you continue. I think about ending it a lot, but I fear going to hell, and I have three beautiful daughters with chronic lyme. What would I teach them.
Lord help us all.
God bless you MB. I will pray for you tonight really hard. I don't pray enough. Tonight I will.
Mary
Mary, see post time stamp: May 29, 2011 09:05 PM
That will tell you how I do it, and why I made the choices I have. Thank you for the prayers. Unfortunately as time has passed I realized that I'm totally on my own -- aside from advice from people here and there. But ultimately, I have to make the choices that will either bring me to health or failure. Whatever the outcome, I'm ready.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by gailth: metallicablue, have you tried the salt/vit c protocol? It has helped so many people. I'll start tomorrow and I will post result. It is a long treatment though but conventional treatment are eternal. Take care
I never answered this question. No, I actually had not done this. I suppose I could go another year or two doing something like this or the Marshall Protocol, but it's gotten to the point where family and friends see me circling the drain and feel it's time to hit the highest risk therapies.
I think it's time as well. It could be the biggest mistake of my life, or it could be the key. Whatever the outcome, the Salt C and other treatments will still be waiting. I just can't wait anymore. I'm dying spiritually in this apartment. It's been 10 years of different treatment methods, and 3 decades of misery. It's time to take the biggest leap.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
8 Ways To Reach Hope
MB, you are my HERO.
I will be in silence and fasting...
Untill I can come to the Reality of what I just digested from YOUR LIFE...
I appreicate The TRUTH and Honesty in this.
I am thinking Salt.. The Finest healing salt in this world... if I am going out in A Blaze of Glory... let it be that I salted my self to death to beat this PLAQUE... Life is to Love One another.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Update:
I moved onto a new Lyme Specialist in CT after being "let go" by Dr. H in New York.
My Lyme Specialist thinks he knows what is keeping me sick and he thinks there is good reason to be hopeful. The news was very surprising. My Heavy Metal test wasn't a shock -- excessively high lead levels, moderately high Mercury levels. Lyme Disease IFA was Equivocal and both Western Blots were Igenex positive. The Bartonella Henslae IGG came back positive (This was surprising), as well as Rocky Mountain Spotted Fever (Also surprising). Ready for the big surprise? What came My blood smear for FL-1953, also known as PROTOMYXZOA came back "significantly" positive, with widespread massive biofilm production in the blood.
This infection was never treated, Ivermectin is the treatment of choice thus far among people diagnosed with it, and the progress can be substantial. Therefore, the doctor is going after this, as well as the other infections, and I'm using two very simple treatments to do it: Artemisinin Essential produced by Hopkington Pharmacy in Massachusetts, and Compounded Ivermectin in it's purest form starting at 1mg. The AE is taken 2 caps x 2. The AE has heavy metal binding agents in it. Here are the ingredients: Artemisininm, Essential Phospholipds, Calcium EDTA, Alpha Lipoic Acid, and Olive Oil.
The biggest problem with FL-1953 is it produces massive amounts of biofilm. To give you an idea, think about the plaque buildup that takes place on your teeth over time. That's "biofilm" Now imagine your blood and arteries being filled with this. Other infectious diseases associated with ticks seem to have evolved together, with this infection providing a nice safe niche in the form of the biofilms. This information I'm presenting isn't new per se -- the infection of FL-1953 was discovered in 2009 and named in May of 2011. Biofilms have been suspect in Lyme Disease for a long time now. Treatments which break up Biofilms, including AE with it's EDTA, are useful in gradually tearing down the wall.
It is unwise to attack the biofilm or infection quickly or with heavy treatment. Like Lyme -- the consequence will be a massive flare-up of the disease, thus a "gentle" approach over a longer period of time is optimal to treat. People are free to share this information. The Ivermectin they can order if they can get their physician to send the prescription to Hopkington Pharmacy and start with a compounding of 1mg, and gradually increase each week by 1 mg until you reach three -- but only if symptoms do not increase. If symptoms increase substantially it means you've gone too fast for your particular case. The AE is over the counter and can be purchased I believe from Hopkington possibly, or you can get your doctor to order it for you and pay him/her directly. Hope this helps.
So, bottom-line, the reason some patients with severely chronic Lyme Disease and co-infections may be because they also have this co-infection which requires a very specific plan of attack that often isn't incorporated in the therapies offered by most Lyme Disease specialists.
This is being found in many other conditions as well, such as patients with Fibromyalgia, CFS, MS, ALS, etc.
Some people have asked why the Ivermectin must be compounded initially:
The reason for the compounding is that it's purer, and you can better control the dose early in therapy. If you're reacting heavily and flaring up on Ivermectin, it's too much, otherwise those doses are fine. The dose for the Ivermectin Compound Agent is "For 2 weeks take 1 capsule (1mg) every 3 days. After two weeks, increase to 1 cap (1mg) every other day, and yet again after two more weeks take 1 cap (1mg) every single day. The dose then climbs from there to 2 and 3 along a similar pattern. The dose for the AE (A Essentials) is 2 capsules twice per day for 5 days, then the weekend off, then another week, then weekend off, and then another week (So 3 weeks in total you're taking it with the weekends off). After your third week you take the entire fourth week, including the weekends off, and then you start over and rinse and repeat.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
MB, I'm curious as to the name of your new LLMD. The doctor sounds VERY educated. If you can PM me, I'd greatly appreciate it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
This is incredibly exciting. Please continue to post on the Ivermectin thread as well, so we can know your progress.
I am on ivermectin and so far I beleive this is going to help me get well.
I personally believe my problem is filarial worms due to all of my symptoms. These parasites have a symbiotic relationship with Rickettsia(sp) which explains my high RMSF titers. I have always responded to Doxy and Mino, also Flagyl. The other abx that really got me was Rifampin which can treat Filiarial worms.
I remember that tetracycline helped you also in the past.
Thank you for all the detailed information on the AE. I will check that out.
Please keep us posted MB
Posts: 2232 | From USA | Registered: Aug 2009
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Yes MB so glad for your posts, they help everyone. I really hope the Fry thing is a breakthrough for you. I had similar results on my smear and was told that folks who have been on long term abx have more biofilm. Tough huh?
Posts: 3528 | From US | Registered: Apr 2007
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sparkle7
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Member # 10397
posted
Interesting! Thanks for posting. I hope this will get you well.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I'm SO excited for you! Awesome news! I wonder if you see the same LLMD as me. I'll PM you.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Getting rid of intestinal parasites is very important since 70% of the immune system is in the guts and apparently it is our immune system that does most of the work.
Early on I was given a stool test which went to Genova Diagnostics. Turned out I had the most common intestinal parasite which was blastocystis hominis. Alinia did the job of getting rid of it.
Posts: 705 | From WA state | Registered: Jul 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I don't think Ivermectin gets into brain?
Posts: 3528 | From US | Registered: Apr 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I do think it gets into the brain and my LLMD said that it does. I have been off and on IV meds for over 2 years. I took 1/2 pill of Ivermectin and I could feel that it went into my brain much the same as IV but stronger!
Posts: 2232 | From USA | Registered: Aug 2009
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Do I have this right? Is Heartguard for dogs Ivermectin?
Posts: 2541 | From Northeast | Registered: Jan 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Metallic - I am so happy for you!
Only on Lymenet do we congratulate someone for identifying their potentially life-threatening parasitic infection. And that's why we're so great!
I continue to rule in/rule out various tick-borne infections. The fun just never stops!
I plan to try Ivermectin on my next round, as I am currently herxing my face off on antibiotics and antiparasitic herbs.
I can't wait to hear how you do on your new program.
Again, congratulations. Your persistence has paid off.
I hope you find much healing in your very near future!!
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
MB - I have been thinking of you! This is great news to hear!
I felt MUCH better after being on Ivermectin for just 2 weeks. Maybe related to this infection?? Now I want to be tested also.
Please keep us posted. Routing for you! Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is great news. Are you following Dr F's diet suggestions? I am on and off it myself but think it should be the next move for me.
I took ivermectrin horse wormer once and had no reaction at all. Does that mean anything? I squirted the amount for my weight on a cracker and ate it - it was so awful. No wonder my horses hate it so much.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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