Sallysblooms

My Integrative doctor does the testing. Very easy to order, just like B12 and vit. D, etc. She is a family doc.

Yes, Phoniex Rising is the best place for information. Great chats too, we help each other there and on the forums.

If you find a good doctor, they can help with supplements for your immune system so you lessen the viral load. Not all doctors know which is shameful. Every doctor should be able to help with good supplements and take good blood tests to check B12, Vit D, etc. This forum will help you understand. http://forums.aboutmecfs.org/forum.php

Yes, that is from 1998. There are several viruses that are often involved. You can test for Epstein Barr. There are new things finally happening. It has been painfully slow and many docs didn't understand or want to understand what CFS was. Very sad. I use supplements for my POTS and CFS and supplements for my immune system to fight the Epstein Barr Virus. Most people have this virus, as in Mono when you are ill as a kid. Some of us to not fight it and it has high levels. There is a really good forum for CFS. Lots of info there.

My BP is high also. Many docs don't know that BP can be very high with POTS.It is hard to manage and so destructive, scary. Mine will be very high, then a few days of sort of high, then much better.. Never low on the bottom number.

You can test for CFS. Spinal fluid, news on TV just this week. I just hope it embarrasses the doctors that didn't think it was real. Shame on them. Many people with CFS have POTS.

As I said, I have had CFS for 18 years, no I do not work. Stay at home wife. I started with POTS two years ago. I take many great supplements three times a day. I have two doctors that tell me what to take, brands and dosages. I am fighting the Epstein Barr virus with good supplements for my immune system. Sleep is also important for repair. I can sleep very well now with my hormones balanced and good supplements. I get blood testing every few months. My vit D level was awful, that is now at a good level thankfully. I am slowing improving with POTS and CFS. I just want to function better, I know I will always have both. Having the B12 level checked with CFS is important. My symptoms were vertigo, severe exhaustion that sleeping never helped, dizziness. Those were the worst along with noise sensitivity. 5htp is very helpful for seratonin and sensitivity, sleep etc. A good doctor should test many things with good blood tests so they can help guide with supplements.

I have had cfs for 18 years. I will write more later.

Sandyshell, just wanted to tell you there are a lot of GREAT pastas that are gfree. Just try and find your fav.

I have had major general aneth. three times in the last two years. Twice this year. No problems.

Does he know about supplements for fatigue and neuropathy? There are really good ones that you can try. I don't take any prescriptions for POTS. Most doctors have no idea for some reason. I have doctors that do treat me with very good ones.

I eat healthfully most of the time, but I love to drink a little Coca Cola and have some Chocolate. I eat no gluten so it is important to also have some FUN. Everyone is different. It bothers some people to have even a little caffeine. Doesn't bother me at all. I don't drink coffee though, so I don't get that much.

Finding a doctor that knows how to test and order the best bio hormones is best. Most doctors have no clue about balancing them. I do great now. I know they are important for the brain, bones etc. also.

Ask your doctor about Alpha Lipioic Acid. I use Lipoic Acid Supreme daily. It is given to people with nerve problems all the time. Not just for that but it is very effective for nerve health.

Wow, you have been busy! I am so sorry! Please keep us informed!

Being stable with blood sugar and nutrients is important to me. Maybe some can do it. Fasting has never been something I feel a need to do. I make sure I eat healthful meals and snacks to stay well. I take many supplements also so food and drink is important.

God doesn't promise we will all be healthy, but he is always with us. I don't ever get angry. I just ask for direction...to doctors, supplements etc. I just want to be led to the right places for help. I have not been let down. I am so sorry about how you are feeling. I am sorry your husband is ill, prayers for you both.

Good you saw your cardio. You do have to make sure the heart is "ok." POTS does this to me. Chest pain, like a big pinching feeling. Painful. Shortness of breath too. This used to be much worse. CoQ10 and all of my other supplements like Mag. have helped this greatly. The "air hunger" is rare now thankfully. I hate that. POTS makes each day an ADVENTURE! Not in a good way as we know. I am improving so much, but I still never know how each day will be. I put stickers on my calendar to keep track of how I feel. Silver, orange, brown, purple...and BLACK. Thankfully I never have to use black since I am better.

I had to have a total hysterectomy two years ago. I have a very good doctor, Dr. Dzugan from the Dzugan Method. I get my blood tested at least twice a year. He works through your doctor. I was on the patch and that is all with my old OBGyn. That was bad. With Dr. Dzugan, you get on the hormones you need. I take the combined estrogen gel, progesterone and a little testosterone gel. Also 7 Keto and Pregnenolone. The key is to have someone that really knows what they are doing. Take blood tests and see what you need. Balanced hormones are important for a lot of reasons. I have my hormones balanced to keep from having migraines also. I had them for many years. Clueless doctors didn't help. I finally have help!

I can't stand heat. But I can now tolerate warmer water in my bath. Even at a restaurant when it isn't hot, I get hot and my symptoms come. I need to start carrying a folding fan like people used to. ha.

I have a regime I follow. I have two doctors that know about supplements. Do you have a doctor that has any knowledge in integrative medicine? Also, I had a Nutritionist with a PhD that worked with a doctor before, that is a good thing too. I know that there is very little that reg. medicine can do. I do not take any prescriptions for my POTS or CFS. I do not have my list with me. I will have to check. I take good things for my immune system like AHCC, Maitake Mushroom drops and Thymic Protein packets. I take Vit C, E and Zinc also. You can google all of it. I take Vit D because mine was SO LOW. Carniclear (liquid l-carnitine) CoQ10, Adrecor, Lipoic Acid Supreme (SUPER antioxident, good for the nerves,) Magnesium powder, Calcium powder, and others. Oh DRibose has been wonderful. I take blood tests every 6 months to see how my levels are. Vit, D, B12, Epstein Barr, etc. I get guidence from my doctors about the dosages, brands, time of day etc. I have improved a lot. We need to support the body with supplements that we need (we are all different with that) and to help with symptoms. Also help with immune system. Eating very healthfully also. Then the body will slowly be able to heal.

I hope everyone has a good day. I want to be positive and I hope everyone can share a postitive story. I have this signature with my name with a snail. Slowly but surely, I will heal.

I wanted to give it another try today. I walked my little dog. I had done it once before, but holding the leash was hard. So, a neighbor saw me and told me I should put something around my waist. I had tied another leash to the w.chair so I untied it and put it around my waist. Then I could handle the chair. I have CFS, but that is doing fine, my POTS keeps me from walking. I can walk, but not for a long distance without getting sick. My hubby came out to check on me and took a picture. He usually pushes me and I walk her, but I have been wanting to go alone. I can't go far, ha. It is not easy to push the chair. I get so winded with POTS. Anyway, it was nice. Happy pup too.

I hope it works great for you!

Yes, I have Epstein Barr. I have not used antivirals. My doctor said she has used them with some people and they feel better and then have a relapse that is worse. She knows I would do badly. I have lots of trouble with medicine. Everyone is different however. Antivirals might help some people. She has me taking Maitake Mushroom drops, Proboost Thymic Protein A powder. (Comes in little packets) also a very expensive mushroom supplement called AHCC plus. You can google it all. Also, I support my body with many supplements like vit E, C, Dribose (SO good for CFS) CoQ10, liquid carnitine, a very good multi, and a lot more. We are making my body as strong as possible. I am guided by my doctors on the brands and dosages. I take my supplements three times a day. I take blood tests twice a year. I had VERY low b12, that is very good now. VERY LOW Vit D and that is better now. Still needs to be better.