Jump to content

martiz

Members
  • Content Count

    156
  • Joined

  • Last visited

Community Reputation

0 Neutral

About martiz

  • Rank
    Advanced Member

Profile Information

  • Gender
    Female
  • Location
    Houston Texas
  • Interests
    Getting well

Recent Profile Visitors

1,306 profile views
  1. 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, crosp
  2. 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
  3. 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?
  4. 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
  5. 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 illne
  6. 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 m
  7. 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 usua
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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 i
  13. 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 h
  14. 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
  15. 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. Work
×
×
  • Create New...