martiz

Sorry, Issie, I didn't see this post. I will write here some of what I have written to you backchannel. First, Naltrexone is not of the sulfur family. Here is the link to drugs.com on naltrexone: http://www.drugs.com/pro/naltrexone.htmlhttp://www.drugs.com/pro/naltrexone.html "Naltrexone hydrochloride is a white, crystalline compound. The hydrochloride salt is soluble in water to the extent of about 100 mg/mL. Each tablet, for oral administration, contains 50 mg of Naltrexone hydrochloride. In addition, each tablet contains the following inactive ingredients: colloidal silicon dioxide, crospovidone, hydroxypropyl methylcellulose, lactose monohydrate, magnesium stearate, microcrystalline cellulose, polyethylene glycol, polysorbate 80, synthetic red iron oxide, synthetic yellow iron oxide and titanium dioxide." Naltrexone does not help your body make more endorphins. It blocks the endorphin receptors in your brain so that in the middle of the night, when your brain produces it's endorphins (a fixed amount), they flow past the endorphin receptors and go into the body to heal and do it's thing. So naltrexone is able to help the body's pain, immune function and healing in this way. There are several pharmacies that don't compound it correctly - adding in calcium carbonate as the filler which blocks the drug. Some add fillers that people cannot tolerate or they use slow release naltrexone which doesn't produce the spike needed during the night. You can read more here, about sources to obtain LDN, clinical trials, etc. http://www.lowdosenaltrexone.org/ I don't have a doc working with me on this so I purchase my tablets 50mg, from India and I mix with 50ml of water. Then I take 4.5ml (equal to 4.5mg of naltrexone) every night at 11pm. I have done this for 3 or 4 years now. Naltrexone MUST be ramped up slowly - you don't start taking 4.5 on the first night! I started with 0.5mg and ramped up to 4.5 within 7 or 8 weeks. There are few side effects for this drug, compared to other drugs - please read the website. As stated, all drugs, supplements and even herbs! have side effects but this medication has fewer than most. That being said, it may not work for you. I first started LDN to handle my pain and as long as I don't overdo, I do not need additional pain meds or muscle relaxers. I have experimented and I am one of the lucky ones and I can take tramadol without ill effect on the days that I do overdo it. My sleep cycle is better (I can fall asleep easier and stay asleep longer) as well as better immunity. I tested this earlier this year and my health plummeted (not right away but within weeks). Marti

I make my own from 50mg Naltrexone tablets. I mix with 50ml of water and take 1ml per 1mg. Easy peasy and about $16 per month not $50 or more. I order it from overseas. Marti

Trying to get a handle on the temperature dysregulation as it seems to get worse as I get older. I am looking at this ChiliPad for my bed/wheelchair. I can't afford two so I would just move it from bed to wheelchair. http://www.brookstone.com/chilipad-cooling-heating-mattress-pad and this cooling vest with Phase Change: http://store.coolvest.com/p-24-concealable-rpcm-cooling-vest-white.aspx I picked this one because it is more form fitting and comes in small. It can be worn under clothing. Any thoughts?

I got a stomach ache from the salt tablets - I think it was the fillers. I use natural sea salt, either in water or under my tongue followed by water. It would be nice to have tablets when running errands but I usually just grab a salt packet from a fast food place and put that under my tongue and drink 8 oz of water. Marti

Before an attorney, consider Allsup. They only take the govt allowed amount which is not 30%. Google them. I was going to use them. I hope they take you. Sometimes attorneys do nothing so find a good one (or use Allsup). Sorry you have to deal with this stress. Did you work during that time - maybe your company can write a letter stating how many sick days you used or that your employment was in question due to your illness. I would try to get letters from other people not immediate family. Your pastor, employer, child's teacher - a third party, especially if they can attest to the illness causing a problem in your life. Also, there is a Yahoo group called "Disinissues". Disability insurance issues. They are a volunteer group and have attorneys on the list ( a couple) that give free advice. HTH, Marti

I have been on LDN for a couple of years at 4.5 mgs per night. I never had insomnia but had great, vivid dreams the first few nights. I still have a few sleep problems but overall, it has improved my sleep. Easier to stay on the normal circadian rhythm once I get on a good schedule. Started slowly and ramped up to 4.5 mg. I have breakthrough pain if I drop to 3.5 mg. it resolves all of my pain - joint, muscle, back. The only thing it doesn't do is handle my pain when I am overactive or bending down too much (I have spinal stenosis). I feel that it has also make my urticaria better and my sensitivities to foods and chemicals a little better. I do not have any improvement in my POTS symptoms but I wasn't expecting to - I never heard of anyone's POTS getting better or worse on LDN. That is interesting - I wonder how that would work. I do not have an increase in energy which others have reported. This was disappointing but that's okay. My understanding is that it's chemical structure is similar to the body's own endorphins so it blocks the endorphin receptors. Then when you sleep, the endorphins your body has produced go right past those blocked receptors and are used in the body. I think the longer you have unresolved pain, the more your body produces pain receptors. I went years with unresolved pain so I hope that in the future, I might see an energy increase when there is more in my system to be used by my body. It does not work if you don't take it during a certain time frame at night. For example, if I stay up late and take it at 1:30am, it doesn't work the next day. I have breakthrough pain. You are not supposed to be able to take Tramadol (an atypical opiod) but I have taken one dose with no ill effects. I very rarely have to do this - maybe 3 times in 2 1/2 years. You are also not supposed to drink alcohol (which I don't) but I have had a bit of Amaretto and I have had a margarita with no ill effects. Casein (dairy protein) also is a no-no as it keeps it from working correctly. I forget why but it's on the main website. Lastly, I order my tablets from overseas and make my own liquid suspension. One 50mg tablet to 50 ml of water, kept refrigerated. I pay $16 for 3 months not including the shipping which I usually split with friends who are also ordering. It is one of my desert island supplements. Marti

Fatigue can be one of the hardest things to fix but I strongly suggest that you do not turn to stimulants. That is a fast way to fatigue your adrenal glands and end up in worse shape than you are now. Many things can lead to fatigue that are easily treatable and may lessen the overall burden. Are you eating lots of carbs to give you that energy boost? Are you drinking a lot of caffeine? These things can lead to a crash which makes you feel worse overall. Another thing to make sure of is your thyroid. Did the doctor tell you it's okay or did you review your labwork? A TSH over 2.0 is usually considered hypo but the better docs. Current mainstream medicine uses 4.0 which is in reality raging hypothyroid. Gluten seems to cause inflammation which leads to fatigue in me. I'll keep thinking - a little brain dead tonight. Marti

The way that this MAY tie in together is like this: The EDS causes weakness in tissues everywhere and possibly the tissues in the cerebellum (the back lower part of the brain). are weak so CSF gets trapped in brain since brain tonsils drop down (possibly due to EDS weakness). This restriction in CSF back and forth between brain and body and possibly blood flow may be what is causing POTS and ME. At least that is what I am piecing together. Marti

Hi Hibi, If it was the link that I provided, please remember that those are proposed criteria that have not been accepted or approved yet. The group that created that list of criteria are some of the bigger names in ME research which is why it is so far the best criteria thus far. The next best is the Canadian Consensus Criteria. The worst is the Fukuda Criteria or the one before that and I can't remember what it was called - the one by Ramsey that was psychological in nature. Have you also been checked for chiari malformation and/or EDS? That is what I am doing now and it's amazing the the Chiari symptom list is so much like ME. The EDS list is a little different. Marti

I would like someone who will work with Dr. Suleman in Dallas and Dr. Dhar at Baylor. Someone who can ties the ends together or at least manage my prescriptions. Near Houston (I'm on the north side near Conroe) but wiling to travel a little bit. Marti

I will sometimes go off most or all of my meds and supplements and then add things back in one at a time. Can't do it with everything but it is amazing how sometimes a medication or supplement can make you feel worse in other ways. I try to do this once a year. Marti

Hi there, The facility is http://www.altushms.com/about-us/contact-us.html. The two names they gave me were shirzadi - 713-777-4122. Kraus 281 870=9292. Shirzadi is a neurologist and I haven't looked up Kraus. I have an appt with Shirzadi on Friday but will cancel if Altus can't take my insurance. Supposedly, they have a financial assistance plan to help but I can't afford that either - well, we'll see. If I do cancel, I may go ahead with a neurosurgeon and see what type of MRI's they do for Chiari. Either Dr. Parrish or Dr. Dong Kim. The test is weight bearing - sitting. I have no idea who will/can do the CINE MRI. Haven't started researching that. I have read a little about CSF leaking - not enough to give direction but I say - go with your gut. Most likely, you know what it is. Marti

Having done a boatload of research, this is what I have found: There is a facility in Houston that does weight-bearing or open mri. I have spoken to them and they do test for chiari malformation - sitting/weight bearing (not standing). We will see how "sitting" I am or if it is more recumbent. I got the name of a couple of docs and one of them had a cancellation so I see him on Friday. I will keep you posted. Another test (possibly better) than a weight bearing is the CINE MRI where they measure the CSF flow to your brain. I have the name of another doc that sends patients for this. I am hoping this doc will send me for that one too. I am almost considering cancelling my appt with the otolaryngologist on Tuesday. Bad thing is there is an EDS Support group meeting this Saturday that I wanted to go to but can't afford gas to go Friday, Saturday and Tuesday. Well, one thing at a time, I suppose. I will keep you posted. Marti

Hi there I have used it in the past. I used Nature's Sunshine Liquid Chlorophyll. I took it everyday but especially when I felt a toxic burden. My son used to call it swamp water but it tasted fine. More importantly, it made me feel better. I used it as a blood purifier but it does other things. I can't say that it helped my POTS symptoms directly - just overall felt better. Less nausea. It's has been some years since I took it regularly. I have been craving it a bit but I am not as toxic as I used to be now that I have changed my diet. Marti

I was not able to take regular Vit D supplements - I had to work my way up. I was also very low - 23 at one point. There are vitamin D drops so you can start at very low levels. I would get very sick taking even 1000 units. So I would take 1000 units every third day. I am now at 1000units of Vit D3 every day and will start the every third day for the 2nd 1000units. I am supposed to be taking 4,000 to 5,000 daily. I have a ways to go! I take Low dose naltrexone for my pain. Works as long as I don't overdo it. I order it from overseas and make my own titration. I take 4.5 per day. Works for joint, muscle, and that all over pain. Marti