Hi folks - I got hit with horrific neuro lyme in 1999, and battled with IV's(lost my gallbladder to rocephin, etc). Upon relapse, I was introduced to rifing by a very kind person and after getting it right, I have the neuro lyme beaten thanks to "the doug coil". However, I have found that as my symptoms go away, I am getting rally bad herxes and nerve pain. I tried vicodin for two months but that is not the appropriste long term solution due to the fact it's a narcotic. It REALLY works on pain. However, it's not the safest choice. What I am trying to find is pain releif via marijuana. This is much better than pharamceutical meds and treats the inflammation better. If anyone has any tips, please shoot me a PM or email. I am in the Chicagoland area. My state does not have medical marijuana, but if it did I would be all over that. It really makes you feel normal again.
If anyone is an abx failute like I was, please look into the doug coil. It's the real deal. Contact me if you need any pointers.
One last thing - I am looking to change doctors. I am in the Chicagoland area but am willing to drive into neighboring states if need be. Thank you and best wishes to all.
Posted by METALLlC BLUE (Member # 6628) on :
Thanks for the post Mike. Maybe you could consider using Lyrica for your pain. It's specifically created to treat symptoms of that nature and works for many Lyme patients.
You also might find Ultram useful, but it seems to only help people who have a pain level less than about 7.5. Once you hit 7.5 it may not be enough and you may either need more, or need to try something else.
Unfortunately, I know of no "good" sources to buy pot safely. There are abundant suppliers, but they lace a lot of their stuff and process it incorrectly around here where I live.
I'm going to begin Rife treatment soon. I have an EMEM3D2 machine.
Posted by Mike30 (Member # 2581) on :
Thx for the tips, Metallic. Very helpful. I too am worried about local sources. It's a shame my state doesn't have medical marijuana. The stuff really does make you feel normal.
I will give the Ultram a shot.
Also, good luck with your rife treatment. I have found it works far better when you are not on antibiotics. You need to have the lyme "out" for it to get nailed by the rife.
Posted by Keebler (Member # 12673) on :
- Since many prescriptions and over the counter products for pain can be very hard on the liver, kidneys or GI lining . . . I focus mostly on other things
First, liver support has to be number one to help reduce all kinds of pain. Be sure your liver support supplements are top-notch. Other things to consider:
* Corydalis (I'd try this before trying marijuana as it has less side-effects). I'll post some research. Sort though what calls to you. I'll leave in the notes regarding kindling and seizures as that same sort of kindling also can send the pain to the moon. Reducing kindling helps to reduce pain.
* MAGNESIUM 1,000 to 2,000 mg/day (to bowel tolerance). Glycinate is a good type but you'll have to read up on your choices. See Burranscano's recommendation, too.
* CALCIUM, and other minerals and electrolytes in balance.
Shixiao San, Jin Lingzi San, Liang Fu Wan, and Baishao Gancao Tang
by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine, Portland, Oregon
excerpt:
. . . Corydalis is added "to increase the pain-relieving effects of this prescription."
To compare Shixiao San and Jin Lingzi San, it is helpful to examine two of the main ingredients. Yang Yifan (9) compares corydalis to trogopterus (wulingzhi):
Corydalis and trogopterus enter the liver and spleen meridians. Both are able to promote blood circulation and remove congealed blood. They are very effective for relieving pain.
This is an excellent formula, intended for use before going to bed (follow instructions and caution with driving until you get used to it. Do not mix with sedative or alcohol).
Ingredients; Corydalis root, jujube seeds and Schisandra fruit.
Jujube is also called zizyphus. Schisandra is also spelled schizandra. Both can be searched at PubMed and at The One Earth Herbal Sourcebook ( http://oneearthherbs.squarespace.com )
Pain Management: Natural Strategies to Regain Mobility
- By Nieske Zabriskie, ND
=====================
Perhaps this is discussed in the aboves article but GINGER capsules and also ENTERIC COATED PEPPERMINT pills are very helpful, too. I stress "enteric coated" as peppermint oil is very caustic and can burn. These specially coated tablets do not dissolve until further down the GI tract where it's not such tender tissue. Peppermint can also help sort of wake up my brain.
These help by lowering inflammation and encouraging circulation. ("Stagnant blood" is just one cause of pain. Inflammation is another.)
HOLY BASIL (Tulsi) might also be one to consider as it is very calming and will help with sleep.
Good luck.
===============
Hey, also to consider is body work. Massage - weekly, if possible, can be wonderful and the effects can last for several days to a week.
Cranial-Sacral therapy, too, can help the whole body. Be sure to get a gentle approach, though. No "snap 'n crack" or sudden "twist 'n shout" movements. That can really wreck a lyme patient's neck and brain for a long time afterward.
Upledger Institute trains DO, DC, MD and PTs - you can find someone in your area trained in this method. They also teach visceral manipulation and you can read about that on their site (just search Google).
If not for diagnostics or for a serious concern (for which you would first see a doctor), some LMTs have specialized training but be sure to discuss where they got it and if they are certified for cranial-sacral - then search web for details about that style before you let them touch your neck. It's beyond the scope of regular LMT training but many do go on to learn this and many are good at it.
====================
Gentle, "Restorative" style YOGA, Tai Chi or Qi Gong can also be helpful to line up better body mechanics and release stress from tight muscles.
[ 03-24-2010, 12:49 PM: Message edited by: Keebler ]
Posted by MariaA (Member # 9128) on :
Personally, I hate the 'side effects' of marijuana. I don't use it recreationally, but every couple of years I try it for something like a migraine or pain- in my case, it just makes me stoned and still in pain or with a migraine. I do know that it works well for some people with those conditions. I think it would probably have been helpful for my appetite loss. Today I was in a moderate amount of pain and visiting some recreational smokers, and had a chance to try some marijuana in food, as I was curious if it might help this particular pain. I ate a 1/8 teaspoonful of some jelly that someone offered me. Everyone who eats marijuana for fun knows that it can sneak up on you, and there's no easy way to dose it when you don't know how strong it is. 45 minutes later I was standing in the kitchen wondering why my Lyme 'vertigo' was back. I was getting worried. then I remembered that actually, I was just getting 'high' by accident.
oh, and, the pain was still there, unfortunately.
Posted by elley0531 (Member # 9434) on :
to get less smoke and more effect one can try a vaporizer. I bought one for a family member who uses pot for depression but has lung problems.
Apparently it is the best method he has ever tried and he uses much less than he used to.
I personally can not do this stuff right now maybe not ever again. It completely aggrevates my mental issues.
Posted by METALLlC BLUE (Member # 6628) on :
There are a lot of pain options, and pot in it's medicinal form is one of many. Like most drugs or herbal therapies, they aren't going to work well for every person.
If the person has great success with one -- such as it seems with the OP, it's best to talk with your doctor or find a legal method of attaining the therapy for your particular stiuation. Exceptions can be made in some cases, even though laws are in place.
If it's not a lot of hoops to jump, try that. If it's a hassel, experiment with conventional pain management that is used for Fibromyalgia. That condition is well known for experimental pain management and many doctors have experience treating it.
Posted by MariaA (Member # 9128) on :
Here's a question for folks who may have used it for pain relief: Do you think it's actually analgesic (ie like ibuprophen) or is it more of a 'makes you not care' sort of thing? I know the answer probably depends on the level of pain, what the cause of the pain is, etc. I'm just curious if anyone else divides their pain and pain relief into categories like those two (My friend with severe pain used to call opiate painkillers his 'don't care' treatment- and I sort of think I know what he meant).
Posted by MariaA (Member # 9128) on :
How about other herbal, legal pain relief options? I was researching topical 'rubs' for arthritis and ran across quite a few in this writeup: http://www.blessedmaineherbs.com/chpare.html
here's what I've been doing the last few weeks: heat. Mine is just a sock with uncooked rice in it- I microwave it and strap it to the painful joints (which at the moment are in part of my spine): http://www.arthritis-treatment-and-relief.com/hot-packs-for-low-back-pain.html Posted by kday (Member # 22234) on :
After I got sick, marijuana sent me to the hospital with SVTs (which I get anyway) resulting in panic. My friend counted 230 bpm, but I'm not sure if he counted right as I've never seen it over 200. I was freaking out.
I was actually very sick, in pain, had tachycardia and hypertension at the time, so my friend suggested that maybe a big hit will make me feel a little better.
However when I got to the hospital, my heart was still stuck way up high. I asked the Dr. if it was the marijuana and panic, and he said he didn't think so since beta blockers and sedatives only got it down to about 140. They sent a cardiologist down and he tried manipulating my vagus nerve with no effect. Breathing techniques did just about nothing. I have had tons of cardiac workups (multiple echos, stress test, cath study); all negative.
It was a good scare. Marijuana is no miracle drug in my experience. I probably won't touch it again.
Posted by Keebler (Member # 12673) on :
Topic: 'Shocking' conditions at Tylenol plant ----
Also includes articles about some cases of liver and kidney damage from OTC products (acetaminophen can cause stress on the liver; ibuprofen can be hard on kidneys. NSAIDS can cause stomach bleeding.) -
Posted by merrygirl (Member # 12041) on :
what you need is a good pain management doctor. Its one of the best things I have done for myself.
maybe someone in your state can refer you.
Posted by Keebler (Member # 12673) on :
SOTA Lightworks - high intensity infrared Led therapy system.
------------
Some Physical Therapy departments use something like this. -
[ 11-11-2011, 03:05 PM: Message edited by: Keebler ]
Posted by NanaB (Member # 26227) on :
Ultram, Lyrica, nerve medicines, depression meds, etc. only made me feel worse, not better. My pain doc finally said my body is intolerant of medication - so - I live in pain.
Now I've found out I most likely have Lyme and possibly XMRV. Waiting to start any treatments until the full XMRV testing is available which should be in a few months. Don't want to mess those tests up.
Posted by Keebler (Member # 12673) on :
- Porphyria can cause horrific intense pain (often in the lower abdomen and head), or even just lower level chronic full body pain.
Although lyme certainly creates intolerance of meds (due to the overwhelming toxic nature of lyme clobbering the liver).
Intolerance of meds could also be connected to excess porphyrins (again, the liver not working well enough). More here: ------------
[ 11-11-2011, 03:07 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Acetaminophen BLOCKS the liver's ability to make glutathione, and that can be very dangerous for those with toxic infections who really need the liver to process out waste products.
the switch to acetaminophen might have fueled the increase in asthma.
Since then, more than 20 studies have produced results in support of his theory, including a large analysis of data on more than 200,000 children that found an increased risk of asthma among children who had taken acetaminophen. . . .
- Full article at link above.
[Although this is about kids and asthma, if there's a link for kids, well . . . .]
==================================
Ibuprofen can also be very hard on the kidneys. Even at normal dose, there have been problems for some. Search Google for more details. -
[ 02-16-2012, 02:29 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- So the bladder might better help us sleep:
d-Mannose is a nutritional supplement that can help the bladder calm down.
I have taken vicodin daily for about 3 years now, without it I would have probably taken a 9mm instead. I have have deep, never ending, 24/7 bone pain. Not just joint (although I have that alot also) pain and I also have the achy, bruised muscle feeling kind of pain, but it is the pain in my bones (and I mean all of them) that hurts the most.
I have tried oxycontin, percocet, ultram, lyrica, lexapro, cymbalta and every "psych" drug that they claim helps with pain. They literally made me crazy and I told doc no more "drug testing" for me. Vicodin doesn't take away the pain, but it takes snough of the edge off most of the time that so that I am able to function.
I don't get a "buzz" from it and it doesn't affect my functioning other than allowing me to function normally. I also meditate and when I can afford it I do acupuncture which both help, but I can't spend my life in meditation or full of needles...
Good luck in your search.
Posted by tartana (Member # 28985) on :
I was eating Aleve, four capsules a day,or Vicodin, then when I found a Massage/Reiki therapist I started cutting back on the Aleve, and have now gone two weeks with no pain meds! She really works me over, two hours almost but I can walk out feeling like a million bucks! The fibromyalgia pain is now much better.
Posted by Keebler (Member # 12673) on :
Dr K is a nationally recognized holistic physician with expertise in the fields of nutrition, allergy, environmental medicine, Lyme disease and the healing of mind-body-spirit as a unified whole.
**edited name of LLMD**
[ 07-16-2012, 07:47 PM: Message edited by: Lymetoo ]
Posted by Keebler (Member # 12673) on :
- Many suggestions for topical relief over at this thread: -------------------
Posted by Lucky8711 -
Posted by Keebler (Member # 12673) on :
- Lyme causes elevated cytokines and mitochondria dysfunction. While not at all addressing lyme, this author explains how massage can help with both aspects: ------------
By Nicholas Bakalar - The New York Times - February 6, 2012 -
Posted by elainer97 (Member # 33917) on :
This may or may not help anyone but I'll throw it out there- my LLMD told me at my first appt last week to avoid nightshade foods to try to reduce pain levels.
I felt a bit of a difference after just a few days. I'm not limping as much from my hips. Still a lot more pain than I want but seems like an edge has been taken off. After a full week or so of this I'll do a challenge by eating a lot of these foods in one day to see how much it really is helping (or not). Of course I've also gone sugar/yeast-free and gluten free so I suppose that could play into it all too. We'll see
Nightshades are potatoes (not sweet potatoes tho), tomatoes, peppers, eggplant and some spices like chili powder and paprika. Yes, it has been hard because I love potatoes and tomatoes a lot - I was eating them pretty much everyday. Posted by JCarlhelp (Member # 15957) on :
Inflamacore by Orthomolecular has helped me.
Posted by Keebler (Member # 12673) on :
- Certain food additives can cause pain. Also, for some people, nerve pain can be reduced by avoided excess glutamine / glutamic acid. Detail here: ------------
[section] Carbohydrates Consumed by Lyme Spirochete
An effort to determine which carbohydrates Bb consumes revealed that the organism utilizes the monosaccharides glucose, mannose and N-acetylglucosamine, as well as the disaccharides maltose and chitobiose.
A popular treatment for arthritis includes the administration of chondroitin sulfate and N-acetylglucosamine.
If the arthritis is Lyme-induced, N-acetylglucosamine is contraindicated. 22 (See Chart 14.)
- Full article at link above. -
Posted by Keebler (Member # 12673) on :
- Since a stressed liver can cause tremendous pain, some details here can help:
LIVER LINKS set -
Posted by TwistedbyLyme (Member # 38478) on :
Mike30 and all, I find that the marijuana strains high in CBD are most effective for the pain. There are so many different strains with different characteristics. I can say from experience (I have a medical marijuana license), that not all marijuana is the same, due to varying chemical compositions. But like everything else we try, I feel like it's so important to listen to our bodies.
kday, I'm so sorry for your experience. I had something similar happen to me (but wasn't smoking at the time). My LLMD and I uncovered it was a magnesium deficiency in my case. I continue to take a Magnesium Glycinate supplement with B6, and trace minerals for this (along with the slew of others).
Keebler, much love to you for your awesome posts! You're so spot on (specifically the supplementation) for things that have been working for me.
Posted by TwistedbyLyme (Member # 38478) on :
Before I found a LLMD, my primary doc kept telling me to take acetaminophen for the pain...as soon as I read about how it blocks the liver's ability to produce glutathione, and how dangerous that can be for those with toxic infections, I knew I had to change doctors!
Just feel it's important to note that so many of these drugs we need to take, also deplete our system of the very essential vitamins and minerals needed for us to recover.
Posted by TwistedbyLyme (Member # 38478) on :
Keebler, that's so sad, and just so wrong & unnecessary. < boy & your mother > I'm sorry for your loss.
I just lost my mom a couple of months ago to lung cancer (not a smoker). It broke my heart hearing of how many chemicals she/her body had to endure, and also how one medicine was given to treat symptoms of another. Then causing more and more deficiencies. In such an unusual way I feel like her battle gave me some strength to fight mine.
I'm a big advocate of natural & alternative routes whenever possible, but just because I've had too many first hand experiences with medicines & doctors doing more harm than good. I've wound up in more than one case study on separate occasions. It inspired me to take up pre-med classes (for Medical Illustration), study nutrition, herbs, Eastern medicine and aromatherapy.
Of course it doesn't help that my body has also always done things outside the norm even before I got The Lyme! Makes it fun when I see doctors... The universe has been teaching me patience. And humor.
And yes, your posts definitely make a difference! Ty.
Posted by Keebler (Member # 12673) on :
- Ty,
Hmmmm. An hour or two ago I deleted a post I had there (just couldn't say it clearly) and now I see that you must have seen it and then replied. Sorry to have created a burp in the flow.
Sorry about your mother, too. It is hard to see the state of medical care. Hoping for change. Hold onto that humor. -
Posted by TwistedbyLyme (Member # 38478) on :
No worries Keebler, but you came out clear to me! And thank you.
Posted by Keebler (Member # 12673) on :
- By James Gallagher, Health and science reporter, BBC News - 29 May 2013 -
Posted by Keebler (Member # 12673) on :
- Berberine really helps to lessen pain for me. I often run out, so often, indeed that I know this really helps.
When I run out (usually for a week or so), pain shoots to the moon, it is so very bad I can barely stand it. [However, I should take magnesium but can't afford more than one thing at a time. Magnesium would be a help, for those who can get it. If I can only get one thing, it must do beyond triple duty as Berberine seems to do.]
It takes a week to ten days when back on Berberine for pain to lessen again but then, it's pretty even and I need to pay better attention the calendar and my bank budget so as to never run out again.
Topic: MAGNESIUM LINKS sets -
Posted by Lymetoo (Member # 743) on :
HEADS UP ... OLD THREAD
Posted by Keebler (Member # 12673) on :
- Good point if anyone is going to reply to the initial post.
This has been used / intended as a links set. It's important to add anything that may be helpful or informational to pass along when pain management methods are asked about.
However, maybe it would be best to create a new links set, so that the initial question of post #1 does not take up someone's time. Another day, perhaps, I might be able to sort through this. -
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