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

This was very helpful, Issie. I did not know that is the best way to take H1 and H2. I do both but not together so I am doing it wrong. Thanks for this info. I also didn't know that EDS'ers bruise easily. Explains alot! Marti

Hi Anna, I have had those and they came back negative - RA and Lupus. I will call the office back in a few weeks and see If I can talk to a nurse or find out what testing they want me to have first. I think you may be right - they want to save the appts for those who they know have EDS and she's the confirmation. Those have not been done recently. Maybe I can get those results ready in case they need them. Good thought. Thanks!

Glad your MMT test showed some results so you can get some answers. I hope it is something you can address easily. Praying that they will not drag this out so you can get home soon. Marti

I have done a little research and there is a vertical MRI facility in Dallas. Baylor has the regular tunnel supine. I am going back to Dallas June 2 to see Dr. S so maybe I can wait and have it done there. I am willing to wait to have it done right. My opinion is that once you get a negative test in your file, doctors don't want to retest. Thanks for responding. Marti

Just because he said he was a POTS expert, doesn't mean he was. But I have had a cardiologist who does autonomic testing not offer much in terms of treatment or even lifestyle changes. Welcome Amber, sorry you are here. I am a new member here but have learned a lot already. I would fast whether the hospital tells you not to. I recently had a TTT but completely forgot to fast and it showed normal. The previous two were abnormal and I had fasted. So, that can make a difference. The nice thing about fainting on a TTT is that the test is over after you faint. Since I had forgotten to fast this last time, the test lasted the FULL 30 minutes. I didn't think I would make it through!!! So, let it happen, don't fight it. Don't move your legs to compensate. Keep pushing for answers. Marti

Thanks, Yes - Dr. S. did already do that part. I will wait until we closer to the date as he will have to send a referral letter. Not sure what she was talking about. Marti

Hello, Recently, had a full workup by Dr. Suleman in Dallas and he diagnosed me with EDS. I have an appt to see Dr. Dhar in Houston (where I am from). Her office gave me a hard time about setting the appt - "have I had the testing done"? But I haven't had any testing - Dr. S. gave me the diagnosis based on a physical examination. What tests should I have done before meeting with Dr. Dhar (in July)? Last thing I want to happen is to wait until July, then her office says I need a referral or need other testing then I have to wait even longer until those requirements are met. Sorry if I already posted this. Brain fog. Thanks, Martii

I don't use table salt, I use a good, quality sea salt. I think there are more minerals and less fillers or anti-caking agents. I don't drink any of the sports drinks. I will drink purified water with extra minerals, salt, Lo-salt or No-Salt, Emergen-C packets. Dr. Cheney, an ME/CFIDS researcher, came up with a way to make these electrolyte drinks at home. Google "gookinaid" http://www.dfwcfids.org/healing/gokhmbrw.htm Marti

Hi, I don't have migraines - just a constant, low dull pain. So maybe my advice isn't great. I think the MRI for Chiari is more the head/brain than the neck. But it doesn't hurt to do the neck too. Maybe a diff doctor - a neurologist seems to be a better fit for someone with migraines but I don't have them. or pain mgmt doc? My endo does do a lot for me but somethings are just best with the right specialty. Maybe someone will chime in on this thread or the new post about upright MRI. I also was bedridden and worked my way out of it. And I am a little sad to be going backwards but the nice thing about POTS is that there are some treatments and tests can show you are sick unlike with ME/CFIDS. Good luck to you. Marti

Hi Group, I am being sent for an MRI to check for Chiari Malformation and I have been researching recently that this is best done vertically or weight-bearing rather than lying down. Since Chiari is sometimes misdiagnosed as CFS or POTS. I would like to have the right test done (and so I don't have to pay two copays). I did have a neck injury about 6 months before I developed ME/CFIDS. Is this the best way to check for Chiari? Is it hard to get this done vertically? Has anyone had Chiari diagnosed by a supine MRI? Should I push for this or just let them do a regular MRI? http://en.wikipedia....ri_malformation http://www.chiarione.org/chiari.html http://www.huliq.com...ri-malformation Marti