looneymom Posted January 10, 2014 Report Share Posted January 10, 2014 My son saw a immunologist back in December. He recommended a few new supplements to try with Tyler. Under this doctors recommendadtion I did not start Tyler on these all at once because we did not know if his blood pressues would stay up. These new supplements are L- Carnitine, Co Enzyme Q 10, and NAC. This doctor wants to try to get Tyler's cell energy up, so his cells will open up and release the bad guys. He suspects that mycoplasma and some other things may be hiding in the cells. To get rid of the bad guys he has prescribed Azithromycin. However, as long as Tyler has been sick, I wonder if this will be strong enough. It will be at least six weeks before I will be able to tell if this medication will be strong enough to help. My fear is that Tyler will get sick and things will get worse.This doctor has also prescribed a very specialized B-12 Shot. Our insurance has asked for a letter of medical necessity. They will not pay for the prescription in Oklahoma. However, we were able to get a months supply from the state of New York. Tyler can have these shots twice a week. This week he had a shot on Sunday and he did well with school on Monday and Tuesday. On Wednesday it was awful. He complained that he was hurting more, could not stay focused on school work and feel asleep after two hours of doing school work. So yesterday (Thursday), I gave him another B-12 shot. Thusday was like Monday and Tuesday. Tyler was able to stay foucused, did not need to take a nap, smiling, laughing and talkative. So I think the B-12 is doing something.Just wanted to share Tyler's progress. Hope everyone is staying well and avoiding the flu.Rachel Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 10, 2014 Report Share Posted January 10, 2014 That's great! I'm curious what the special B-12 is? I have begun a methylcobalamin spray(under the tongue) and a few days into it, I told my husband my mind feels energetic. I am going to see what the next few weeks hold to make sure I'm not having a placebo effect. I even have him taking it. Quote Link to comment Share on other sites More sharing options...
badhbt Posted January 10, 2014 Report Share Posted January 10, 2014 You know that is interesting. My naturopathic Doctor would give me a B12 shots then ask me to really pay attention to my symptoms. I started to notice a similar pattern, I would be good for a day to 2 days then bam. He told me that I must be B12 deficient so I started doing the shots every day at first and now I am up to every 5 days. When I start getting nerve feelings I know it is time for a shot. Quote Link to comment Share on other sites More sharing options...
LMG Posted January 10, 2014 Report Share Posted January 10, 2014 I take b12 shots as well. Methylcobalamin and compounded specially. regular b12 shots not as effective. I see the same effects as described above. Less fatigue, and more stability. Some people say they get the same benefits from the sublingual b12, which are easily available. Google Dr. Lapp for CFS. He says 80% of his patients get some benefit from B12 shots Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 10, 2014 Report Share Posted January 10, 2014 Great news for Tyler! Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 10, 2014 Report Share Posted January 10, 2014 Yay! Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 10, 2014 Report Share Posted January 10, 2014 So nice to have something positive happening for Tyler for once! Yay!!!! Quote Link to comment Share on other sites More sharing options...
imapumpkin Posted January 10, 2014 Report Share Posted January 10, 2014 good news! i have good results from b12 shots as well. i'm a fan of supplements! Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted January 11, 2014 Report Share Posted January 11, 2014 Hi Rachel.How wonderful. That sounds like a move in the right direction for Tyler. It's amazing what supplemental b12 can do. Keep us posted on how Tyler does with the rest of the recommended supplement regime. I am also a huge fan of supplements. Thanks for the update. Janet Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 15, 2014 Author Report Share Posted January 15, 2014 Hi everyone,This B-12 shot that Tyler is being given is called Methycobalmin. It has to be compounded by a pharmacy. This week Tyler had a bad day on Monday and he was given a B-12 shot on Sunday. ( low blood pressure, not able to stay alert and fell asleep after 2 hours of schooling, more vocal tics). Last week, I noticed his blood pressure was also lower, so I've had to figure out what might be causing this. The Qco10 100mg was the last supplement that I started with Tyler. So on Tuesday, I did not give this to Tyler and his blood pressures were up and he did not need a nap either, vocal tics were less. So I am hoping this is the problem.Tyler was given another B-12 shot this morning. So we will see if we get the same results today. Has anyone else had trouble with this supplement lowering their blood pressure? I was finally able to find information that it could interfere with blood pressure medication. Anyone else heard of this. Tyler still takes 40 mg of midodrine 3 times a day.Rachel Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 15, 2014 Report Share Posted January 15, 2014 I'm not sure if it was the CoQ 10 or fish oil but I've definitely noticed a problem with it affecting my BP and making it low even with the midodrine. I've stopped both and am doing better without them. I know they're both supposed to be really good for you, but I think like everything else about these diseases we have, we are all so individual. You just have to work with what's going on at the time and go with what's working and drop what isn't. I can't find it right this minute, but there is a huge chart that explains where a lot of these various supplements get processed in the various biochemical pathways in the body. So, theoretically at least, depending on what mutations someone has and what else is going on in their body, they may or may not be able to process or utilize a given supplement as they need to. If you put in more of something than they can use, it may very well shift them into another biochemical pathway that isn't good.Sounds like you're on the right track Rachel. I'll try to remember to look for the chart and link to it later. Quote Link to comment Share on other sites More sharing options...
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