abbriggs

I had a positive Lyme test and I saw and LLMD. He gave me a script for the B-12 shots. He wants me to give them to myself in the thigh ONCE a DAY. I am just a little nervous about it.

I have not had my levels checked.

Has anyone tried B-12 shots for energy? I am concerned that they might over stimulate me.

My BP has stayed high when standing after the birth of my daughter 3 years ago. The only plus side of having it high is you don't pass out anymore.

My Dr. recommended that I get one. I just have not made the decision yet. They are basically a holter monitor that is implanted on your heart.

Does anyone out there have POTS and Multiple Sclerosis? I have had pots for 3.5 years now, but pots is actually the least disabling of my symptoms.

Thanks,

Mandi

Paxil really helped with my symptoms and helped to increase my energy. I was a size 4 when I started taking it a little over a year ago. I have since gained 55 pounds and am a size 12. Another thing about it is, it is one of the worse SSRI to try to stop taking. I have to decrease my dose by 2.5 mg and wait for the horrible side effects to go away about a week and a half then let my body get used to the new dose before tapering some more. I am down to 5 mg. But this has taken me 3 months to get to and I don't think I will be totally off for another month and a half.

Paxil is the only SSRI that I have tried.

I could always count on my SVT to occur about a week before my period and always while I was laying down in the middle of the night. For me I knew that it was hormonal. I had ablation done about a year and a half ago and was very pleased with the results. I will say that I do take BB's so if it did come back I am not sure that I would notice it.

I would. I am seeing one at the end of January. Check out LymeNet. There is so much info on their site.

http://flash.lymenet.org/scripts/ultimatebb.cgi

I see Dr. Ben Levine in Dallas. He specializes in POTS and related disorders. He is a cardiologist. It does take quite a while to get an apt with him though.

I do not have a Lyme Diagnosis. I am seeing an LLMD at the end of January. I have alot of neurological symptoms to go along with POTS. I developed and essential tremor, muscle twitches. muscle cramps, neuropathy. I grew up on a bunch of land. Hunting, having horses, cows, goats, pigs you name it. I have pulled more ticks out of me than I can count. Not everyone gets a rash. There are also coinfections that you can get from ticks as well as fleas.

There are also certain essential oils that are antibacterial. I have read about people using essential oils internally. This has to be done with great care. They must be pure organic essential oils with no additives or other ingredients from a company like Young living (very expensive) or Rocky Mountain Oils (much cheaper and just as good). And not purchased for your corner drug store. They can be dropped in a liquid and drank. placed under the tongue or put in a pill capsule and swallowed.

When I actually get to work I am an Aesthetician and I have seen what they can do for the skin. I know the effects that they can have on helping one sleep. there are some that can help the endocrine system and balance hormones. because they cross the blood-brain barrier, can really help with neuropsychiatric symptoms. Many oils can help with brain fog, depression, and anxiety.

This is kinda just me thinking out loud. But I thought that I would throw this information out there. It is something that I am going to give a try.

Mandi

I too am on this path. LymeNet has alot of helpful information.

http://flash.lymenet.org/scripts/ultimatebb.cgi

I feel better while I am on antibiotics.

Mandi

Where is the list of Dr.'s that specialize in POTS?

Thanks,

Mandi

beggiatoa: Plenty of people have POTS without having low blood pressure. You blood pressure has nothing to do with getting a POTS diagnosis you must have Orthostatic Tachycardia but, can have completely normal blood pressure.

Daisy: Sorry I meant that your sinus node was the area of the heart that POTS tachy comes from. Not that is was the source of POTS. Yes, it is the ANS that causes it and many of us have other ANS issues as well.

I did not have my levels tested. But I also was taking an antibiotic at the same time. I am wondering if that had something to do with it also. the increase in energy. there is another post here that states that alot of people feel better after being on an antibiotic.

ramakentesh: I am not sure about all his patients. He did tell me that mine was due to deconditioning ( I got it while on Bed rest with a pregnancy) but, i think that I had it long before that and pregnancy is just when it chose to rear it ugly head with a vengeance. Pretty sure that I have MCAD too. I would have episodes that sent me into Anaphylaxis when I was younger. It was never the same trigger.

As for Dr. Levine, I have seen him a few time the most recent when I acquired a tremor a year and a half later he had to admit that he did not think it was from deconditioning anymore and that is was just time to let it go. He thoroughly pissed me off. I have not been back since.

My EP was trained by him but is wonderful although he will completely admit that he does not know everything.

Aprilmarie52:

How was your Dr. diagnosed with mito? Did she have a blood test to tell her she was low in CO Q10?

Thanks,

Mandi

It all depends on what part of your heart you are having ablated. You should never have your sinus node ablated which is where POTS comes from. I had SVT and had ablation done on it a year and a half ago and it helped me tremendously. My EP also trained with Dr. Levine who specializes in POTS so he knew exactly what he should and should not do. With me my SVT would happen at night when I was laying down so we knew immediately that it was not POTS. I think second opinions are a must. But not with someone that is not versed in POTS.

Worththewords: I am curious to know what part of your heart you had ablated. Was it your sinus node?

I see Dr. Ben Levine in Dallas. He is a cardio that specializes in Pots.

http://www.utsouthwestern.edu/findfac/prof...,,14262,00.html

One of my major complaints or symptoms is exhaustion. I can be standing cooking in the kitchen and then suddenly have to sit down. It is like I don't have the energy to talk, blink, move my arms, or hardly breath. I will have to sit for 30 minutes to an hour before I can get back up.

I started taking 50 mg of CoEnzyme Q 10 two months ago after reading From Fatigued to Fantastic. Since then I have not (Knock on Wood) had any more of these episodes. Does this make any sense to anyone?

Thanks,

Mandi

You can purchase 5HTP here in the US. I have been thinking about tapering off the paxil and giving it a try. I have been on paxil almost a year now and have gained 45 pounds in that year. I am 5'6 and weigh 180. I was 135, which is a size 4 for me. I don't take it for depression. It helps with Anxiety and some of my other ANS symptoms. It does nothing for my heart rate. The main benefit I get is it helps with energy.

I missed it for 2 days last week and felt very strange in my head, like in between dizzy and spacey. Just strange. I will have to taper for like 2 months to get off of it. All I take is 10 mg.

I take Toporal XL too. Some days my heart rate is better that others as well. I have found that the days that my heart rate is the highest is always close to the time to have my period. My pots has alot to do with my hormones.

Would someone please explain Eds to me. I do not know what it is.

Thanks

I Have had post for a while now and about 10 months was put on Paxil to help some of my autonomic symptoms. Squeezing of the throat, fatigue..... It really helped with alot of my symptoms. But, it also helped me to gain 45 pounds. I now have high cholesterol and am as heavy as I was 8 months pregnant with my daughter. My question is what antidepressants have you tried, what has helped, what has not, what were your side effects.

I know that a few of you are ANTI antidepressant so there is no need to let me know your views. I have read them on other posts..

Thanks

I take 500 mg twice a day. My Dr. told me to try it 3 times a day but I am very paranoid about trying new things, so I started off slow. Twice a day was just enough for my body. It does not interfere with my sleeping AT ALL. The only things I have noticed is pretty much the absents of PVC and PAC and maybe a little bit more thought clarity.