posted
I am reluctant to post this up here. But I am with no other options and I can not go on living like this.
My pain is killing me. I have never in my memory of existence not been in pain. I apparently contracted Lyme disease and other tick-born illnesses at 4 and it has been non stop pain ever since. With each passing year it gets worse, and so far treatment is not working as well as the doctors thought it would. I will not stop trying to get better, but I will not continue with the pain.
I made this decision last night (the pain was worse than ever) when I realized I could never kill myself as it would destroy the people I love and who love me. I suppose for the past few years in the back of my mind I saw it as some sort of option. One day at 18, I realized "oh my god, I have to live another 5 years like this" and I panicked. At that point, doctors could not figure out what was wrong with me. Then I realized, 5 years... actually its probably another 40 years and then I really freaked out.
Bottom line, I last night decided I will no longer live like this. I can not kill myself (I realized last night it would destroy everyone I love. can not do it), and every day I hope I just die. This is not a life. So, I am changing the rules, and I am going to make this work at any cost until this stupid *insurmountable number of curse words* Lyme Disease is dead.
Now I am considering doing something that I think is illegal. I really do not know if it is or not. But I don't think my doing it would hurt anyone. I want to buy the pain meds, that i know help, over the internet. My doctors can not write out a prescription for it or they would be putting their whole practice at risk and all the Lymies they are helping. I have tried pain specialists and everything else under the sun and all of it has either not helped, or made things worse. Now, I am afraid to try stuff, as acupuncture about killed me and my back is still messed up from it, and I went to one of the best doctors for acupuncture. Pain specialists told me they could not help me as I did not have a back injury. I could go on and on...
What I would like to know is:
Have any of you tried or know of a good online pharmacy that can be trusted?
I do not want to waste what very little money I have on scams. I have no money, no job, and can't mess around this new endeavor of mine to live. I am hoping, if I can get the medications that helped me I will be able to get a job, so I can support myself, buy food, actually help my wonderful boyfriend pay rent. Things of that nature.
I am not depressed. I have a lot of great things in my life, I am just in a place where I can never enjoy them because of the pain.
Of course, Addiction is one of those things that anyone considering pain meds is concerned about. Doctors have always been weary of giving me pain medication because of my age, stating I have a long live ahead of me. But, another part of my realization last night, for the past 5 years, I have dreaded the thought of having to live one more year in this condition. Now, I am at the point of dreading each passing day. It just seems at this point, the risk seems worth it if it means me truly wanting to live one more day. Of course, I will do everything in my power to avoid becoming dependent on the stuff. I need no more complications added to this mix, but I want to live. That right now seems more important.
I am sorry if this topic is inappropriate. After giving it a great deal of thought, I realized I just have nowhere else to go and thought perhaps one of you might have some information to help me.
Thank you for your time. Best of health to all of you!
Posts: 419 | From Florida | Registered: Apr 2007
| IP: Logged |
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up for Skyler.
Ideas anyone??
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
what about trying the buhner protocol? you can start out at less than 50 bucks i think if you order from iherb.com.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I'm sorry that I don't have energy to reply to all aspects of your letter. However, I do hope that, somehow you can address the core problem.
If you need help with pain along the way, I hope you can find safe solutions, of course. One thing to remember, though, is that many pain meds are very hard on the liver and that will actually increase pain.
Please also consider taking milk thistle, at least, to give your liver some level of support and protection. It may not be enough, depending upon whatever meds you get, but liver support is vital.
Might you have friends who would take a massage lesson from a LMT (licensed massage therapist) and then work with you on a regular basic for massage to help your body move out the toxins? This will help decrease pain and also help your nervous system in many ways.
------
Match photos of your pills.
If you get meds over the web regardless of if from across borders, check the actual pill with a photo from the mfg web site and the official photo of that med to be sure you have the real deal.
You can get a bottle of andrographis for under $9.00. That is the best source for an all round antimicrobial. It's the primary herb in Buhner's plan. I'm up to a bottle a week but, just staring out, a bottle would last you 3 weeks.
It would not cover the full protocol, but you may be able to do that with the Resversatol, etc. At first, the andrographis will increase fatigue tremendously, but that gets a bit better. I can tell it is helping as the swelling in my ankles went down by many inches in no time and I have fewer seizures on this - better sleep and pain is more tolerable.
It has lowered tinnitus for me but, sadly, it appears to have no effect at all by lessening hyperacusis that troubles me the most.
It's not a miracle but it's kept me on this planet when I thought I just could not go on. I've studied up on it and am very impressed with it.
I know I still have a long way to go but I am so very thankful for this and for it being affordable.
You can also get organic garlic and take 1-2 cloves a day in the middle of a meal, if your stomach is okay with that.
======================
If you consider this, please read the book very carefully first.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
Thank you for your help and concern. Randibear, I have never tried that protocol. That sounds like a wonderful idea. I am going to talk to my llmd about that.
Keebler, I asked my boyfriend to pick up some milk thistle after work today. Damage to my liver has always been a concern of mine, when the doctors first started putting me on pain medications. I know I certainly do not need any more problems. Massages have generally helped me in the past, but they are so expensive. And now the pain is so bad I can't bare to be touched. I am diffinatly going to look into the andrographis. This is something I have never heard of before. That is exciting it has helped you so much. Its a great thing i love garlic, I started taking garlic as a helpful supplement about 6 months ago.
Lymetoo, I do have a good LLMD, thank god. I have been pretty lucky with that. Right now, I can not treat my Babesia. Every time I try any meds for it, in a matter of 3-5 days they make me so ill I I just about land myself in the hospital. Have to get IVs and such to get me back to just very ill.
Thanks Tracy9. I will give that a shot.
Thank you all so very much for you help with this. Lymenet is the best.
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Sklyer-
I'm sorry you've been suffering so much. It's hard for me to recommend anything for you as, of course, I don't know your complete medical history and current medications. I can only speak from my own experience.
With this disease, I have been in "off-the-charts-non-stop-diffuse" muscle pain. It was like a toothache-throbbing-pain just under my skin, especially bad in my legs.
I tried everything to try to rid myself of this pain short of taking Alieve...Advil..etc (didn't work for me)....I never took prescription painkillers except for a few rare times I took Flexeril for back spasms....For years, my pain has been a 9 out of 10....extreme.....
Anyway, I have found four things that are all fairly cheap and they have helped SUBSTANTIALLY with this pain: Vitamin D (which I assume you try to get plenty since you live in Florida); MagTabSR(form of chelated magnesium from Niche Pharmaceuticals which Dr. B recommends); NAC-N-acetyl-cysteine; and Vitamins (B-12, B-6, and C)...
Do you know if you have low levels of cysteine or glutathione? If so, you can have intense, chronic muscle/nerve pain from ROS (reactive oxygen species). NAC helps to restore your levels of glutathione which fights ROS. Many, such as myself, feel worse when starting NAC as it is a powerful detoxifier.
You can purchase all of these without a prescription from a healthfood store. Please discuss with your doctor as I don't know what your medical history is...
So sorry you're in so much pain...
Posts: 1155 | From Southeast | Registered: Oct 2005
| IP: Logged |
posted
Wow Bugg! I have no idea what cycteine or glutathione is. Do they run those tests on a regular lab blood test. Cause if so, then I am fine. If not, that might be my problem.
For some bizarre reason B-12 makes my pain worse. I have tried so much, and quite often had the pain even worse. That makes me a little afraid to try anything new. But I need to live pain'less' and am still willing to try anything to get to that reduced state.
I will ask my doctor about the things you mentioned, Bugg.
Everyone here has been so helpful. I really appreciate it.
I did call a really good pain management place. The doctor sounds like he knows what he is doing. In our phone conversation he brought up a few things I had never even heard about that might help me. Later this week I go to my first appointment. I feel confident that things are going to change for the better. Pretty exciting.
posted
Medical grade marijuana, might help you out a ton. I don't care if it's illegal you have to do what you have to do. Grow your own, make it happen. It has saved many, many people in your situation from doing the unthinkable because it works for pain relief from serious illnesses such as yours. Most people that finally end up trying pot as a last resort, find it to be more effective than all the pharmaceuticals making them sick all those years and wish they knew about it sooner.
Anna Scott April 6, 2009 Sarasota Herald Tribune
Marijuana is the only drug Cathy Jordan says helps her fight Lou Gehrig's disease. The 59-year-old mother smokes two joints every night to relieve depression and muscle spasms, and to boost her appetite.
"It's keeping me alive," said Jordan in an interview at her home in Parrish. "Anti-depressants made me a zombie and other drugs had bad side effects. The crime is that people like me can't get it legally."
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[dizzy]](graemlins/dizzy.gif)
![[confused]](graemlins/confused.gif)
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Pretty exciting.
Printer-friendly view of this topic