Need help to understand how to get help

Discussion in 'Fibromyalgia Main Forum' started by Lookn4health, Jul 18, 2012.

  1. Lookn4health

    Lookn4health Member

    Hi, I have been ill for 26 years. In the beginning I tried everything and everyone to get well but it was the 80's and nothing was known about what was wrong with me. I was told it was in my head. Thru the 90's I went from doctor to doctor, from nutritionist to nutritionist and then from quack to quack hoping to find something so I could continue working. I even went for therapy and group therapy and the therapist told me I was physically sick and there was nothing she could do for me.

    I did acupuncture in 2000 and she saved my life. But she could never bring me to the point where I could work again.

    Then I gave up and did nothing until 2005 when I found Dr. Larry Sharp. Unfortunately I was to ill to make the 6 hour trip to see him more than twice. Then I gave up for the next 6 years and did nothing. Then I found out I was losing my health insurance so I thought there is one last doctor I have not been to so I better go and see what if anything she can do for me. She is a leading doctor in this field.

    She did extensive blood work and I have HHV6 and virtually no immune system. I tested twice for Lyme and it was negative both times. I have been seeing her for 11 months now.

    I have extreme difficulty trying to stand up long enough to peel 2 potatoes. I feel like I am going to crash to the floor.

    So I went and had a tilt table test done and the doctor found nothing wrong with me.

    As long as I can keep moving I am ok but due to the CFIDS I don't have the energy to keep moving. I can make it around a small grocery store to buy one days worth of food maybe twice a week. If I have to stand in line to pay I want to ask everyone to let me in front of them but I have never done that. When I get out to the truck to load the few bags of groceries I am in such a state it is unbelievable. I feel like I am going to die right then and there.

    I am taking anti virals and they are bringing down the viral load. This is the only thing this doctor has done for me.

    So when i get on this board and I read about all the things you are doing especially the mitocondrial post and the peptide post that I just read well I have to ask the question HOW do you understand all this information and HOW do you find a doctor to help you or is it something that you just have to research and research to find the answers.

    I now have no health insurance, no job, no disablilty and no chance of getting a job being this ill. My days and nights are totally turned around. When I wake up in the late afternoon it takes me several hours to get out of bed and move.

    I have sleep apnea and I was using the CPAP machine but my lungs were getting worse by the day. I think breathing thru the plastic was really affecting me. It is a shame because I could tolerate that mask on my face.

    So if anyone can shed some light as to how I would get started I would appreciate it.

  2. mbofov

    mbofov Active Member

    You have a lot going on. Most of us here have had to do a lot of research on our own, over many years. If I had relied on my doctors, I would not have made the progress that I have. This board has been an invaluable source of information, together with the Phoenix Rising board.

    Though you had a negative tilt table test, it sure sounds like you have orthostatic intolerance, which is classic for CFS and would explain your extreme difficulty standing up. Here's an excellent article you should read:

    As you can see from reading it, you can do your own test with a wrist blood pressure cuff. What to do about it is another matter and I don't have the answer for that, but you could do more research and see what others are doing, ask questions on this board about what people do for it, and talk some more to your doctor. You could show her the article and blood pressure cuff testing protocol.

    How do we understand all the information on mitochondria and peptides? By reading and reading, asking questions. Often I will just skim something and if the basic premise makes sense or the protocol involved is not too complicated, I will just try it. And ask questions.

    Finding a doctor to help can be difficult, if not impossible. When I did the methylation protocol, I was on my own - I didn't have a doctor helping. I just read about it here and decided to try it. Re the peptides - if you read up on all the peptide posts using the search feature at the top of the page, you'd find out there are only 20 some doctors in the U.S. who do this, and the posts also tell how to find out if there is a doctor in your area who do the peptide injections. They are very expensive - roughly $300 a month for a year - so they are out of the reach of many of us here. Also finding a doctor who does them close to where you live is a crap shoot.

    Did your doctor test your vitamin D levels? With your immune system shot, it's very likeliy your levels are very low. I've been on a rather high dose of vitamin D3 for quite awhile and my immune system is functioning quite a bit better.

    You could have so many things going on - weak adrenals, low thyroid, low B12, folate deficiency and so on, all will contribute to weakness. Also low potassium can cause severe weakness.

    To get started I suggest just start reading about one thing (the article above is a really good one so you might start there). ANd then post your questions, and then read some more.

    Take care-

  3. jc16551

    jc16551 New Member

    The first step would be for you to share your symptoms, in detailed and precise terms. Effective treatment depends on effective diagnosis.

    Dr. Dan
  4. MicheleK

    MicheleK Member

    Hi, It is a fact that orthostatic intolerance varies and not only can it change from day to day and week to week, but it can change hour by hour and minute to minute! So getting a negative tilt table test doesn't mean you don't have postural orthostatic tachycardia syndrome or neurally mediated hypotension.

    I have been a POTS patient for many years and your description perfectly fits the syndrome. Do you also feel weak and sweaty when standing in a line? That would be even more evidence.

    You can get a very inexpensive heart rate monitor anywhere. Every morning for a week, before you sit up in bed check your heart rate. After a week you will know what your average resting heartrate is. Then when you stand up from the bed, take it again. Write down the difference between your heart rate lying down and standing up next to the bed.

    I would wear the heart rate monitor all the time and when you feel symptoms coming on, check your heart rate to see if it is elevated greatly. If it is, try to sit or lay down flat to bring it down. After keeping a journal of the heart rate fluctuations, bring them to your doctor and explain what you have been doing. Likely he will acknowledge your experience.

    Drink lots of water but also increase your salt intake. It helps to drink an electrolyte drink like Vitalyte or even just Gatorade (though that has lots of sugar in it).

    Let us know how you do. Truly, if you can pinpoint the orthostatic issue and treat it, you will have a higher quality of life. I wish that for you and every other patient on this board. It's tough living this way. hang in there. Hugs, MicheleK
  5. mbofov

    mbofov Active Member

    Michele posted some excellent ideas re POTS.

    I thought of a couple of other things. I was helped immeasurably by a chiropractor who does muscle testing/applied kinesiology. I had been getting sick for about 7 years with no help from docs, and came across this chiropractor who helped me with several things using muscle testing, including weak adrenals, several digestive issues, a toxic liver, inflammed gallbladder, and so on. I would hvae been much worse off without him because the doctors picked up none of this. If you google "contact reflex analysis", you can find more info, or just muscle testing in general.

    Also, is a good resource for finding an integrative medicine doctor, who are the ones most likeliy to know anything about CFS.

    I'm really sorry about no health insurance, no job, etc. A chiropractor who does muscle testing would be the cheapest route to begin with, maybe you could try that. You can just call their offices and ask if they do it. You can also go to the Standard Process website (they make nutritional supplements used by those chiros) and their customer service number will give you the names of practitioners in your area.

    Take care-

  6. Lookn4health

    Lookn4health Member

    Thank you everyone for posting comments.

    I will take Dr. Dan's advice and post information I have found out from various doctors over the 26 years as soon as I can sit down and try to remember those things in order as they happened to me.

    One other thing I should mention is that I only have one kidney and I have been so afraid to take a lot of supplements.

    I know what GSE is and I tried that many years ago with no results. Maybe I did not take it long enough. I will start taking it again.

    I will post more on this in a few days. Once again thank you to all that replied.