I am posting this new thread in order not to hijack Greystreet's.

Visioniosiv, your response to my post about conflicting medical advice made me wonder what we can do about this. The money spent on bad medical advice is considerable and a great loss, but it cannot compare to the considerable pain it causes along with the loss of quality of life.

In my case I believe the ignorance of medical personal prevented early diagnosis. If even one had suggested CRPS as a possibility I would have researched and maybe have prevented it from being a chronic condition.

I also do not understand why there is no decision tree to follow for CRPS. You would think in the Internet age, all doctors would have a computer system to help them diagnose better with a handout.

I am still reeling from the paucity of information I was given regarding brain surgery and follow up. I only learned from a follow up letter that I would need a stent as well as coils, along with lifetime aspirin use. The letter also referred to me as a "he" and mentioned controlling a collagen vascular disease that as far as I know I do not have.

I would like to trust the professionals, but with every interaction I find a new reason to be skeptical.

The bones in my foot and ankle are demineralizing and the pain is through the roof. I have constant throbbing in the back of my thigh and that adds to my misery. I am spending a fortune on healthcare, but I feel like I am my own doctor.

I'm so with you! The ignorance and lack of urgency among my healthcare providers has been so frustrating. I told every single one of my providers before my diagnosis that "I can't relax my leg". I didn't say "I'm scared to" or "I don't want to". I said "my body won't let me". Not a single one of them made note of that as a key symptom. I also told three of them that the seams on my pants felt like sandpaper. Nothing.

Even after I got my diagnosis they continued to fail me. It wasn't until weeks into my own research that I found out I should stop icing (even though I told them weeks before that I thought it was making me worse). My physical therapist even googled it right in front of me!!!!!!

I'm coming to a more and more solid conclusion that I need to trust my own intuition and the wisdom of all of you more than the doctors, as we are all now too aware that doctors are not the all-knowing wizards the media makes them out to be.

I can't even imagine what a state I'd be in right now if I didn't have the level of advocacy and literacy skills that I do. Just as much as figuring how to get our doctors to be better at their jobs than we are, how do we help the 50% of the population that has low literacy skills and can't to the same research we can?

You are right, they do not listen! Like you I told multiple medicos about my symptoms, the burning pain that prevented me from sleeping-that required constant icing, the feeling that I was walking on broken bones, the pain moving, that a tiny, hard crumb felt like a boulder and could throw my balance off. I screamed when I took a shower. None of this is in the notes. Not one word. It is as if they,as group, decided that what I reported to them was of no value.

I begged for pain help repeatedly, but got nothing, worse I was treated like a drug addict and I believe there is a hidden report written at the beginning of this misery saying I am a drug seeker. I am 65 years old with no history of drug use. I don't smoke or drink either. It boggles my mind that not one of the doctors I saw, did not think it was odd, based on my history, that I was in extraordinary pain begging for relief.

Today I am mixing up my first batch of low dose naltrexone, with naltrexone pills. It is hard for me to believe I live in the USA, pay privately for healthcare and in order to get relief I have to buy a drug and mix it myself. If I want medical marijauna I have to pay a private MJ doctor $260, register with the state $50 and then go to the only dispensary in the state which is miles away from where I live so I can spend another $300 or so to get pain relief. There is something so wrong with this! But I have no other choice.


Meds: Neurontin :400mgs 3x a day.

BB,

I understand the desperation for a med that will work. BUT....LDN has a very small therapeutic range. Patients often start at 1.5mg and go up to maybe 4.5 max in increments. Compounding pharmacies have triple mill systems, etc. to make sure the dose is standardized. I am concerned you are getting into something that may sabotage your efforts at healing. You are in a consistency danger zone. We may have our challenges with doctors but there are competent ones out there and a doctor and reputable pharmacy should really be doing this for you.

Have you tried calling compounding pharmacies and asking who in your area prescribes LDN? That is how I found someone who will prescribe it.

It is illegal to sell prescription drugs over the internet in Thailand. Thailand is absolutely notorious for online pharmacy scams where internet 'pharmacy' sites are actually selling counterfeit and contaminated products. There was a scam in 2013, for example, where over 30 different pharmacy websites with different branding were all in fact linked to one woman who was illegally selling counterfeit drugs online in a huge, professional set-up.

You have absolutely no idea what you are buying. It is entirely possible that it is not the drug you think it is, however reputable the website you bought from looks and however genuine all the packaging looks. The ingredients could be toxic or dangerous - that is common in these counterfeit and contaminated prescription drugs. As you have no idea what you are actually taking, they could cause you further harm or interact with other medications or supplements.

Its up to you of course what you decide to put into your own body but this is an incredibly risky and illegal activity, you may well just be throwing your money away and you are endangering your own health. Under the circumstances, is it actually worth that level of risk?

Littlepaw,
Thank you for your concern. I understand why you think as you do.

I have experience with two compounding pharmacies. Because I was having constant attacks from Ménière's Disease I was able to convince my old PCP to give me a prescription for a compounded drug after I supplied her with multiple monographs and other info. The drug worked well for two years. I even regained my lost hearing.

But something suddenly changed, I started having attacks and my hearing declined. It took a long time to figure out what happened. Ultimately I learned that the compounding pharmacy changed the supplier of the main ingredient, one which did not seem to work for me even though it was supposedly the same chemical formula. I then went to another compounding pharmacy, which used the original supplier, but this pharmacy mixed the formula wrong so often I would find the capsules oozing and stuck together. They were ineffective. I permanently lost 50% of my hearing in my right ear during this distressing period.

Both pharmacies are top rated.

Please read: http://www.lowdosenaltrexone.org/comp_pharm.htm

The instructions on YouTube and those I found written by a chemist to make LDN are straight forward.

Basically a 50mg pill is scored and put in 50mgs of distilled water. The pill and water are refrigerated while the pill dissolves in two hours. The mixture is shaken and then the sediment is allowed to settle. Afterward the appropriate dose is drawn up into a calibrated syringe and taken. I am going to start with 1.4mg and see how it goes.

At the risk of being a total pain in the ***, you need to bear in mind that the distribution of the active ingredient in pills and tablets is notoriously random. Its one of the well known problems with people splitting pills and tablets. Because the active ingredient is not necessarily evenly spread throughout the whole tablet, each half can contain dramatically different amounts of the active ingredient. Given that your instructions and the doses are supposed to be precise, you need to bear in mind that however careful you are (and assuming you even have the drug you think you do) splitting a tablet means you can't ever be certain about the dose you actually get.

I'm not trying to be difficult - I just think you need to fully factor in the significant risks and issues there are with both your materials and methodology.

All your concerns were mine as well. Again I understand what you are saying, but there was considerable due diligence put into this before going forward. FYI I did not randomly select any overseas pharmacy via a google search and blindly give them my credit card info.

I paid considerable sums of money to two compounding pharmacies for a unique compounded drug that worked beautifully when it was compounded properly, but when it wasn't, it ruined my life and took my hearing, so I am informed differently than you are regarding the safety and efficacy of compounded drugs provided by a compounding pharmacy.

Please read the following report from the FDA:

http://www.fda.gov/Drugs/GuidanceCom.../ucm155725.htm



The reason the tablet is split or scored and both halves put in the distilled water is to assist dissolving. I did not bother splitting the pill, but it would not be an issue, I used the entire pill. Also these pills are not slow release. I followed instructions provided by a chemist using precise equipment.

As I said, its your choice to take these risks with what you are buying on the internet and then putting into your body.

I didn't mention compounding pharmacies so I think maybe you have confused my post with someone else's. Compounding pharmacies are not the same as the large scale, commercial pharmaceutical manufacturing facilities run by drug companies who would normally manufacture and supply the type of medication you had been hoping to be prescribed.

I did not confuse your post with someone else's. Low Dose Naltrexone is not manufactured by large scale commercial pharmaceutical manufacturing facilities. The only ways to obtain it are via a compounding pharmacy or DIY. Dr. Bihari, the leading LDN doctor, recommends the latter method.

I am glad we are having this discussion, because it highlights the issue of access. I am in extraordinary pain all the time, because the legion of doctors I have seen will not give me oral (I recently was given neurontin) or topical pain meds. I am fearful of driving lest I brake hard and damage my CRPS foot and ankle. I can barely walk 40' feet on crutches. I cannot use stairs. I have to have a heating pad and a heated blanket on my foot or it gets icy cold. Socks make it worse, because they act as cold insulators. In order to follow Dr. Bihari's protocol in the traditional manner a person would first have to find an LDN doctor, then go the doctor, convince said doctor to prescribe naltrexone instead of LDN. This process requires incredible wherewithal that most sufferers do not have. I for one do not have it.