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Avatar universal

A horrible week

I'm feeling very discouraged. This week my doctor told me I have a double gene mutation MTHFR. Will have to do some research but I guess I can take some "more" supplements to help this. Then I went to the ll cardiologist. I got the echo, my heart rate was 102, I sat up to go on the treadmill and it jumped to 140. Needless to say I lasted about 2 minutes before I got dizzy and had to lay down. It took forever to come down. I can't believe last summer I was exercising 5 days a week, biking, hiking, playing. Now I can hardly walk to mailbox without getting dizzy and winded. Long story short, the Dr.'s think I have POTS. I honestly thought I would start abx treatment and things would get better not worse. I teach preschool so I'm up and down off the floor, bending down to 4 yr old level and so dizzy all the time. If things don't get better soon I not sure I can keep working. I really don't want to stay home and think about Lyme all day. The only saving grace is I have enough sick leave to take me through the school year. I just want this to go away ASAP. My Dr said I can do IV but I would have to come in 3 times a week for 90minutes for 10 weeks. I'm embarrassed to say I only drive short distances and the doctors office is 1/2 hr away in crazy traffic. I'm feeling so overwhelmed right now I can't make any decisions. Ok enough complaining form me. Any of you out there have POTS? Do you take anything for it? Did it get better with treatment? If so, what treatment? Thanks  
6 Responses
Avatar universal
I had a mild version of POTS (I never fainted), but I've had plenty of tachycardia and dizzyness. It got better with treatment.  

I don't see why you have to go to the doctor's office for the infusions.  Sounds like that's more about his revenue stream than about your care. I understand the first dose or two, in order to monitor you for any adverse reactions, but after that, you should be able to do them at home.

While you might indeed get better with orals, I have found that IV meds were very helpful for me. They've also been easier on my gut than orals. Assuming they work, you'll get better faster. (Your doc is probably suggesting them because of your nervous system and heart involvement.)
1763947 tn?1334058919
I have both POTS and congestive heart failure. I am going to a new cardiologist because there are new medications out there for POTS. I am on a beta blocker which worked fine for 15 years until Bartonella got into my heart and caused the heart failure. I need some guidance and pray the young Dr is Lyme aware.

I don't think IV is necessary. I have joined POTS groups on FB and nobody is on IV. They are on new medications, well new to me since I haven't dealt with this for so long.
Avatar universal
I have POTS but it only got worse after I had to go off of antibiotics (due to the state I live in). Before that it wasn't too bad.


You can read a plenitude of causes, symptoms, treatments on Wiki. (Wiki offers citations so it's not quite the White Bread that some people think but it does need clarifying.)

I saw Lyme disease offered as one of the causes. Perhaps as you continue to treat it may get better.

There are also some physical therapies that might help.

About the IV---- in case you decide to do it. It's not always the treatment that ends Lyme disease. That should be your decision, though.

BUT----- I don't understand why you'd have to go to his office to get the infusions! Most doctors have the IV catheter placed in  a hospital then assign a home health agency to oversee instructions, dressing changes and delivery of the medication filled syringes to your home.

You should ask him about that. (Somewhere here there is a fairly complete description of how that works. Found it.

Avatar universal
You said:
This week my doctor told me I have a double gene mutation MTHFR. Will have to do some research but I guess I can take some "more" supplements to help this."

You COULD take more supplements. They may help. But they may not.

You might want to read "How are changes in the MTHFR gene related to health conditions?" found at http://ghr.nlm.nih.gov/gene/MTHFR

"other disorders - increased risk from variations of the MTHFR gene
Polymorphisms in the MTHFR gene have also been studied as possible risk factors for a variety of common conditions.

These include heart disease, stroke, high blood pressure (hypertension), high blood pressure during pregnancy (preeclampsia), an eye disorder called glaucoma, psychiatric disorders, and certain types of cancer. The 677C>T polymorphism in the MTHFR gene has also been suggested as a risk factor for cleft lip and palate, a birth defect in which there is a split in the upper lip and an opening in the roof of the mouth.

Studies of MTHFR gene variations in people with these disorders have had mixed results, with associations found in some studies but not in others. Therefore, it remains unclear what role changes in the MTHFR gene play in determining the risk of these complex conditions."

Mixed results.
Possible risks.

But perhaps your doctor knows of some supplements that might help. Good luck.
Avatar universal
Mojogal - is the beta blocker you are on propanatol? I took one for the 1st time yesterday which made me feel sluggish, but was sure nice having my heart rate stay down. Good luck with your new cardiologist. I hope he has some answers to heal your heart. I'm going to check out pots on FB.

Cave76 - Thanks for all the links to research. I wish my brain was working better so I could comprehend some off this. Oh well thats another chapter:)
Avatar universal
" I wish my brain was working better so I could comprehend some off this"

If you have any questions I'd be glad to try and answer them. That's the way I learned-----asking questions about the MANY things I didn't understand----- which was almost everything at the beginning.

Use it (the brain) or lose it. (grin)
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