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Question For You With Pots And Lymes


AJVDK
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Hello All,

Hope this find you all feeling good, and enjoying your day.

For those of you with POTS and LYMES, how do you know the difference between a HERX, and the POTS getting worse?

Also for those of you with POTS and LYMES what diet changes have you made that you have seen improvement with? There are so many different books, and information on the web, I am not sure with ones to try?

Well I started IV Docycycline yesterday. I have to infuse every 12 hours, and then also to the fluids for the POTS, so I am now stuck to the IV pole a lot. (But if this works it doesn?t matter)

Today I am feeling very tired, worn out, and wiped out. I am sleeping least 12 hours now a day. I am hoping that this will get better with the treatment.

Also have any of you tired fluconazole? The LLMD is starting me on this along with the IV abx. I guess this is to help with the yeast with the abx, but also they say helps with LYMES? Not sure thought I would ask.

Well have a great day thanks for reading! :)

Amy

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Hi Amy,

That's a question I've been wondering as well. I know that a herxheimer reaction can make POTS worse, but some people who don't have POTS, develop it when herxing. However, I think that us with POTS can go into a "hole" as we call it because of the antibiotics

I had a very bad herxheimer reaction in January after upping the dose of the anitbiotics, and we stopped the antibiotics completely in late January. I was improving for a week or so, then suddenly went into a crazy POTS hole, which I've been in ever since. Right now I"m not on any antibiotics, but am having all they symptoms of a herxheimer reaction...and have also had new symptoms like seizures and visual disturbances.

I think that when our bodies are already so weak, sometimes just the upset of starting antibiotics can make us worse. Just like how we get worse under any other stress.

I know that's not really an answer to your question, so I'm sorry. My only advice is to be very careful and take things slow. If your symptoms are getting much worse, I'd talk to your doctor about slowing down the dose a bit, to let your body recover.

Hugs,

Lauren

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Hi Amy, That is a good question. It's often really difficult to determine if you're feeling badly from killing off the lyme, or if other stuff is just acting up. The one way I can usually tell it's a herx, is from the pain and inflammation. I don't have that normally, but when I went on doxy I could barely turn my neck for the first couple of months. Now, with the other symptoms, like fatigue, palpitations, etc. it's just really hard to tell. I usually just try to rest more, which is good for both herxing and pots :D

As for diet, it's really important to stay on the anti-candida diet while you're on antibiotics. My current doctor also has recommended I eat a lot of vegetables, raw if possible. And, because I'm having trouble keeping weight on, I try to eat a lot of protein as well. What is everyone else eating?

In the past I've tried nystatin and diflucan for yeast treatment. This was long before lyme treatment however. Right now I'm trying to keep the yeast in check with diet and herbal supplements.

Hope you start feeling better soon! And go slow with the treatments if you need to.

Pam

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I've had a hard time keeping weight on too. I can't eat any sugar or fruit right now because of reactive hypoglycemia, and I'm on a gluten reduced diet...so getting those extra calories has been tough.

Right now I eat mostly veggies and meat or eggs, but I also occasionally have a bit of cheese in my meal. I also snack on "Glucerna" bars, which are meal bars designed for diabetics. They have lots of nutrients but are also safe for people with reactive hypoglycemia.

Also, eating nuts is a good source of calories. If I lose any more weight, I'm going to start eating peanuts and such during the day. Nuts are also a good souce of essential amino acids and other nutrients, so they're a really smart snack.

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Thanks for all the imput, I am going to try the diet. When you all started the ABX did any of you have problems with really bad joint pain, neck pain, and the one that is a little worry about it my chest hurts. I think it more like the chest wall of my heart- but wouldn't that make since since the LLMD think all my heart problems are cause by the Lymes? Well I am off to do another round of the IV B) . You may think I am crasy but I think I feel worse after each time I do them, but I know I need them so I am going to try to fight though it!

Thanks for all you support! :)

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