Do you have severe crashes/ collapses? Suffer from lyme and POTS?

Hi Sue,

Welcome to our Lyme page! That is very sweet of you to do this for your friend. I bet she is distraught right now!

I was also diagnosed with POTS and it did resolve with treatment after about 2-3 months. I wonder if her glutathione levels have been checked?? When glutathione is completely depleted it is hard to get out of bed and some folks need shots in the AM just to move.

Specifically for POTS - the only thing that helped me sometimes was to eat salty foods to increase my blood pressure. But again - I was mild. Is she working with an integrative lyme dr?

~beth

Opugirl, what treatment did you have that helped your POTS?

lymerunner said...
What is POTS??

Postural Orthostatic Tachycardia Syndrome... it falls in the Dysautonomia category of illnesses. Best way I've learned to describe it is that your body is "allergic" to gravity. People with POTS, have trouble with being dizzy when they are standing up or sometimes sitting up. They have lots of headaches, nausea and stomach cramping. Their electrolytes are almost always unbalanced, and they have a drastic difference in their heart rate from laying, sitting to standing.

My 14 year old daughter has it, and before I was correctly diagnosed, they said I had it too. My daughter is doing much better on atenolol, a low dose beta blocker. It really slows her heart rate and helps a great deal with her dizziness and headaches. For now, that's the only medical treatment she needs. However, POTS can vary from person to person, some have mild cases, like my daughter, and others are so severe they are bedridden or in wheelchairs.

Shansmom, it took us about a year too. I'm taking her to my ND and getting her in to my LLMD because I suspect that she probably has Lyme as well. Although, she doesn't have any muscle or joint issues, she does get the blinding headaches and blacks out occasionally. It's hard to tell, but I think well worth having her checked out.

Good luck and God Bless!

I had those severe crashes- boy are they scary!! I could feel one coming on and I had about 2 minutes at most to get to where I was going to be for a while!

It didn't really take too many months of Lyme treatment for mine to clear either, although I don't know if it was 2 or 3 months.

I dont think I ever had anything as severe but before I started on antibiotics, I would stand up and get enormous throbbing pressure in my head. I was checked by cardiologist and found out I have hole in my heart since birth> I think the 2 are unrelated

I have POTS symptoms (very low bp, fainting, fast heart rate). In my case it didn't resolve with several years of Lyme treatment. My LLMD wasn't comfortable treating me because of the heart symptoms/fainting so I self-treat now for Lyme. I deal with a mainstream cardiologist for arrhythmia's and fainting. He has no in-depth knowledge of Lyme or dysautonomias that I'm aware of.

I was first put on a beta blocker which controls my heart symptoms very well (SVT, PVC's, PAC's, atrial runs, tachycardia, etc.). Then Florinef to raise my BP which still ran low. Florinef wasn't working to raise it after a month so the next step was to either triple the dose or try midodrine. I chose midodrine because I was worried about a high dose of Florinef causing immune suppression since I'm no longer on antibiotics. So far midodrine is helping only very short-term (a few hours) and then I'm near fainting again.

You will find that this forum moves pretty quick, as we have many members posting!! Sitting on the top of the very first post in every thread, you will see where it says "subscribe to this thread". If you click on that, you will automatically receive an email alert telling you that there have been responses to that thread. You can use this function on threads that you or others have started. You will have to have your email listed with the site though. You can change settings by going to your profile, then to "edit profile". Be sure to scroll down to the bottom of the page and click "submit" before closing the window.

Oh yeah - sensitivity to almost everything for quite a long while for me, and migraines that would last 3 or more days. Lights, sounds, and smells would completely overwhelm me and then I lost practically all cognitive abilities and couldn't find the front door to the grocery store so that I could leave. Panic would then set in because I felt trapped, and I would have to watch my breathing so that I didn't hyperventilate. Crazy, considering I don't do that, normally it would take something pretty massive to make me panic - I'm one of those that stays calm when most people panic (it all happens later for me, once things settle down).

Anyway, for me -and for many others- this can be due to the adrenal glands starting to really struggle or fail. Once they are supported properly for a couple of months, things should ease up - they did for me.

Eating organic baby food isn't the answer though - there's a problem that needs to be fixed - usually gut repair and/or support. There are actually quite a few different things that can be tried until the right thing for that person is discovered. Some need aloe vera juice to heal. Tons and tons of really good, complete probiotics -like kefir or kombucha - is usually also necessary. This will help heal the issue, rather than just finding a temporary fix.

I personally have not used Cholestyramine, as it requires a prescription if I remember right, although there have been many here that have. I used activated charcoal, which emergency rooms still use, and it's easy to get at a health food store.

PS, those symptoms sound a bit scary. They also sound heart related, esp. with arm pain. Have you seen a cardiologist lately? Also has she had her potassium checked? Margaret

Hi Dreampeddler,
I do hope that you are no longer taking steroids, as they lower the immune system allow these infections to spread even deeper into tissues, organs, bones and even the brain.

Since I posted this my friend's daughter started the DNR System (Annie Hopper) in January. She does it daily in conjunction with Lypospheric Vitamin C and doxy abs, and a strict diet. She is now able to walk for an hour 40min a day, make her own food, has less chemical sensitivity issues and is slowly returning to a more normal life. No more crashes, just a few days occasionally of low grade headaches, amazing as she had frequent migraines up till now. She is the second POTS patient that I know of to have had such an amazing recovery on the DNRS. They live in Sydney, Australia and anyone can contact me for more information.