I haven't heard of it connected with RA (though it could be). Have definitely heard of it possibly being found with hypothyroidism, CFIDS (CFS), Lyme disease, EBV (and other viral syndromes), allergies... long list.
I have been told that it is a symptom of CFS. CFS is an auto-immune deficiency. There is blood work to show if you have a Low Natural Killer Cell Count which many doctors don't know about. Next time you visit a doctor you might want to see about having yours tested. I go to an auto immune specialist that is very thorough in her testing and is up to date on this type of problem. I get weekly injections that help improve my energy and also helps my muscles from Fibromyalgia. If there is a specialist in your area you might want to check them out.
What are in the injections? Is it HGH? Just curious. There is some research out about CFIDS (CFS) and growth hormone deficiencies. Many docs think this is just folks wanting to "be young again." Then, some docs are just more progressive than others.
The injections are Glutathione with ATP. I am not sure what that stands for but I can definitely tell the difference if I don't have the shot. The ATP is to help with the muscles for the Fibromyalgia and the Glutathione helps with the energy. Grant it, I am still tired but not as much without them. What the injections do is help get the Natural Killer Cell count back within range. All of the CFS and FMS is considered under the Arthritis category. If you have an autoimmune specialist in your area I would highly recommend you go to them. They are use to dealing with this type of illnesses. I am very curious to what your Natural Killer Cell count is at and if you have been tested for that. I am sure you know that our problems mimic so many other illnesses and it is hard to figure out which one it is. My doctor has received a recognition award from the Senate for her breakthrough in research. She also does research for AIDS. There are many types of immune deficiencies and each causes so many symptoms. I will try to find some links for you and send them to you. I hope this info really helps you and gives you something to think about. I know that everyone has a cure that never works. You just have to weed through them and go with what makes sense to you. Never be afraid to ask your doctor questions or if your instinct is telling you something different then go with that and if you need to go to a different doctor then do it. They get paid good money to listen to you and you know your body better than they do. I have found out that you definitely have to speak up for yourself.
Let me know if you need any other info or have questions. I have been dealing with this for quite some time. The sooner you get a grip on it and get it treated the better your chances are of recovering from it. Sorry so long.
Just curious if you live in Houston, TX. I think we might have the same Dr....I too take the glutathione and ATP injections. I have since December and they have made a big difference, but I must say, I also take a lot of supplements too. Without the supplements I don't feel the injections would be as effective. I have gone from not functioning to being able to live an almost normal life. (With some new health issues recently) But all and all I feel I'm on the right path. My T cells have gone from 112 to 148 and my ATP have gone from 12 to 40. She told me it might take some time. I also just heard of a supplement from Japan that works on the immune system and focuses on the Killer T cells it's called AHCC I just got it today so I'm hoping this will help me also. Have you heard of it?
Wow. Interesting stuff! Thanks for posting. I'll definitely look into this more. As far as I can tell (from reading the rules), posting docs' names and cities is okay (just can't post addresses or phone numbers, emails or websites).
I'll try to find more info about this. Going to a rheumatologist in a few months, (whenever my doc's office can get it set up), but don't know if he/she is going to be an "expert" on ME/CFS.
It all gets so exhausting.
Did either of you ever try antidepressants for your pain? (Mine is mainly muscular/ligament pain and injuries - constantly have injuries). My doc wanted me to start Cymbalta, but I'm so fatigued right now I don't want to have to fight more fatigue.
Thanks again! Keep posting as you have more info or improvement!
It sounds like we have the same doctor. Is she off of the Southwest Freeway? I refer to her as Dr. S. I am not taking any supplements. If you don't mind me asking, what type of supplements are you taking? I am still not at the rate I should be as far as being able to do things. Have you been diagnosed with multiple health issues and how long have you had them? Unfortunately I have had mine for years and the only time I am able to make it out is to go to the doctor. My autoimmune system is very comprimised. I had surgery last year and it took me a year to find one that would actually do it since I am considered high risk. That was a nightmare. I had to go to Atlanta to get it done. Fortunately enough for me, he was the best doctor for the job. I have osteoarthritis, osteoperosis, fms, cms, brittle bones, spinal stenosis, pain disorder. That is all I can remember for now. We can't give up. I have learned how to deal with it but to accept it for me is giving up and I can't accept that this is what my life will be from here on out.
I am so glad that you are able to do things and that it is working for you. I know that the longer someone has had it, the less of a chance to be cured. I hope that isn't my case. It thrills me to hear that someone is actually getting better. I am happy for you.
I haven't heard of AHCC. I will have to check it out.
My husband was talking to this guy at a wedding last night (husband is photographer) and the guy is videoagrapher and his wife had similar problems as I and she is completely cured. I was surprised to hear that there was another doctor out there that works in this field. I don't know how long she had it but I like checking everything out. I try to not get too excited. I have heard of so many miiracle cures. I like Dr. S. She listens to what you have to say and seems to really care. I have been going to her for over two years now.
Sorry so long. I just get excited to hear someone is doing well and like to share info.
Hope you have a good day.
I am glad to hear that you are going to a specialist. They should know about your problems since they do fall under the "arthritis" category. I wish you could get in sooner. When you are fatigued you don't have the energy to fight so it is important to have others help you fight. I am lucky to have a understanding husband who really cares.
I had to go on antidepressants for depression. It just gets to you emotionally. I do take Neuroten for neuropathy. It seems to help. If you get on antidepressants you sometimes have to try different ones until you find one that works for you. With me, mosts meds drain me for a few weeks until my system gets use to it. Some just didn't work for me and had bad side effects. Don't be afraid to discuss anything with your doctor and make a list of questions, issues before you go. I forget things to ask until after I leave so a list helps me.
If you have any questions or if I can help in any way, let me know. I can tell you what I have been through or what works for me or what doesn't, just remember everyone is different.
Hope you get to feeling better.
Yes we indeed have the same Dr.....Let me start by saying, I think I have had CFS for sometime but I got really sick last year and went to the bottom of the barrel. I have a friend who owns her own Vitamin (ect)store and has been a life saver for me. I take SO MANY supplements along with the injections that I know I could not be doing as well as I am without her help. (she also was diagnosed with CFS a few years ago and healed herself in 18 months) It has taken alot of research for her and I to help me but it is paying off big time. The supplements I am taking you can research on the web or books. With my job I cannot take liquid vitaimins because I travel , so my multivitamin back up is by Enzymatic Therapy for women it is in pill form. If I'm home I take Vita Wave liquid (multivitamin with minerals and alot more). I also take Nac 500 mg., Co q10 200 mg., zinc, magnesium, Astragulus, Thymus PMG (for adrenals), Aloe Vera juice, Omega 3, and now AHCC. I can tell you at first I only did the injections but it just didn't feel I was getting better. I have to young boys that are very busy and not being able to be apart of their lives in every way was NOT an option. I have spent SO MANY hours on the computer and being my own investigator with the help of friends that I truly believe I WILL lick this. I am going through (tomorrow I have a test at the hospital) for other things that I am also dealing with. At this time they also think I have Crohns disease and maybe more. I can live with any diagnosis as long as I know I can do something other than traditional medicine to cure it. I know sometimes you have to do traditional , but sometimes it just masks the problem instead of fixing the underlying issue. I to took antidepressants but they only made me feel out of it most of the day so I only took them for a short time. I think my main problem is I get sick with viruses alot and they have totally run down my immune system along with the antibiotics I've taken over the years for viruses.
I have extremely high hopes, and feel better with each passing day. Stay positive and DO research on alternative supplements......THEY WORK.......
Thanks for all of the info. As you know, you can never get enough. I too have done extensive research. You take what makes sense and try to throw out the garbage. I believe as you, I think that medicine only masks the problems and at times makes them worse. Yes it is necessary but I think sometimes it is prescribed way too much when there are natural ways to improve the quality of life. I hate taking meds.
I hope your test turns out okay and that your other problem is taken care of. When I went through the year of horror with the doctors telling lies instead of telling me that I am high risk and they don't want to operate I did research from the beginning and told all six doctors what I thought the problem was and what test I needed. They wouldn't listen. I told them that I know that I don't have a degree but I know my body and what it is doing. When I finally found the doctor in Georgia and he ran the proper test, everything I told them I had was confirmed. One doctor wanted to remove 90% of my colon when that wasn't the problem at all. You could tell by the look on his face that he knew we knew he was lying but told us that anyway, the scary thing is, we got that feeling from some of the others also. After my surgery, my problem was immediately relieved.
I don't know how you keep up with two boys with this. Actually, now that I say that, I do since I raised two girls alone for 15 years and was feeling bad back then. You just have to. Like you said, it isn't an option. I would be in serious trouble if I had to do it now. It just wouldn't happen. Thank God that it didn't get this bad until they were grown.
It sounds like you are wise in what you are doing and you know you have to speak up for yourself. Let me know how the new stuff works for you and how your test comes out.
I can't wait to find out who the other doctor is in town and how she was treated to get cured. If and when I do, I will do research on it and pass on the info.
Good luck tomorrow.
Well let's just say we must have alot in common. I think once the immune system is in distress other problems are sure to follow. Today I had an EGD done. Last week a Colonoscopy. (with two more test to go) It amazes me all this is happening. I my not only have Crohn's disease and mild proctitis, but today they found a Gastric ulcer ans gastritis. YEA!!!!! Anyway, through my research I have found when the body is in distress it is hard to fight off and control the normal body functions health immune system fight off. The best defence is to get the immune system back in order. (LONG PROCESS) but it is all I can put my energy in.
Most Doctors do not want to hear our input. Most don't believe in anything but traditional medicine. Alternative medicine is not an option. I know somethings are necessary, but overprescribing is out of control. With supplements you know you are putting something positive in your body. Something your body needs or is lacking. That was something I never did. I would try and remember to take a multi , only to forget most days. Now I never forget , it is to important. Good luck to you too!! We can contol our lives and will get better. It just might take a some time to get it back to it's normal fighting ways.......
I have to apologize for all the miss spellings and errors. I guess I thought I was okay ,but was still under the effects of the drugs from my Endoscopy. Hope you can understand my intent. (HA HA). I would rewrite but it took to long.......(why reread later, after the fact?)