Flares every 3-5 days. What is this? It's awful!

Hi there,

I can only say that I have noticed a great improvement over the last 2 months except for my foot pains.

I,too, go for 3 or 4 days where my feet,especially my right one feels nearly OK and them BAM! I'm back to agony in either one or both feet.The pain can be constant or come and go at whim,it drives me bonkers!

I have tried to relate these patterns to diet,stress, even the weather,but it doesn't seem to be relevant to any of these things.
It is sooo frustrating,it's no wonder that we all need a good old moan,so vent away! you're in good company.

Tickled

Something to look into as well is Babesia, as it flares frequently as well.

I used an herbal protocol to treat my Bart, but it still only took me a couple of months to feel a difference, and 9 months for at least most of the symptoms to be gone.

I feel the same way and am going to talk to my llmd about it. My biggest issue is generalized pain in most areas of my body. When I flare which has been more and more frequently, my pain goes through the roof which I'm sure causes my thyroid and stress hormones to kick in. today is particularly bad day after a few decent days. I don't get the 3 weeks of remission with only mild pain followed by a week of steadier pain increase and then a break again. It seems these days it is more constant and the detoxing does very little to improve it. Today it feels like as bad as it has ever been again. I'm thinking of going back on abx. The samento and banderol just don't seem to be helping. Anyways, I do understand your frustration. Feeling at our worst when we thought we were making progress is a real let down. It does require us to be our own advocates and take ownership of our treatment plan.

Trav-Wow, that is really encouraging to hear! I can't wait until I start noticing improvement like that! It will feel like heaven, lol!

One other question that I've been meaning to ask you. Did you have strange vision issues? I have a constant visual "snow" or "static". Hard to explain. I also get after-images - like if I read a book and look away, it looks like there are black lines all over the wall. And when I look at a patterned surface (like a granite countertop) it looks at if it's quivering or shaking. Again, hard to explain, but it's driving me nuts and I've had it for well over a year now. My LLMD said that it will go away, but I just keep doubting that some of these symptoms will ever go away!

Mystery,

My symptoms tend to follow this same pattern too. I am still waiting for my test results, but my LLMD suspects Bart and Babs. It is such a frustrating rollarcoaster ride. When I experience good days in a row, my mood is so uplifted - - AWESOME feeling.  Then the bad days cycle back and it really can get me down in the dumps. I feel like not many in my life understand what I am going through. It's isolating.

Epsom salt baths help me a lot. I need to be better at drinking more water and eating super healthy.

I have cut out sugar. I wish we could afford a sauna.

I had 5 pretty good days, got some Christmas decorations up and our Christmas tree. Now the past 2 1/2 days have been feeling really sick.

I also experience the vision changes that you mentioned. I get the floaters, I have seen the static, white flashes almost like a waterfall.  The black lines. Objects also have "jumped".  My head also gets this heavy, cottonhead feeling. Somedays it's really bad, other days it's not even there.

Glad to know I am not alone.  And that there in an end to all of these bizarre symptoms. I hope you start to get that relief soon!s

 

Hey Mystery -
Sorry for the delayed response. I too have had all of the eye issues that you and others are referring to. Last year I would get bright white light flashes on the outer edges of my eyes. I still have one floater that comes and goes but has gotten better from a year ago. Much less noticeable. I also have had wavy image jumping as if the tv signal was shifted for a second and then moved back but I don't have a tv on. Right now I'm dealing with dry eyes with bloodshot veins appearing and causing a sharp pain. Then the pain goes away. It's as if I have the most painful eyelash in my eye and then nothing.

So detoxing... I've done baths and can't handle it. It irritates my parts down under and causes massive herxing for me. I have done foot soaks but the cayenne ones were causing my ankles to be irritated. My body is just very dried out. I've always had dry skin and I have curly hair which is notorious for dryness. So what has worked best for me...

1. I bought a portable FIR Suana and it has been great. I have gotten sick from over doing it accidentally but I feel better when I keep the temp low and build up every other day. The portable ones start around $165 and you can buy used ones on ebay I think. It folds flat to slide under your bed which is nice too. I just dry brush first, jump into a swim suit and get going.

Other things I've found helpful:
1. Acupuncture has helped with pains and getting things moving when there are energy blockages. I do community acupuncture as that is half the price and I'm in a room with 4-5 others.
2. I do lymphatic drainage when I can. It's more expensive but when she works on my stomach, it gets things moving perfectly which is soooo nice. She also does cranial sacral therapy while there.
3. My new favorite is high doses of vitamin C IVs. They aren't cheap but I tend to get lots of toxins backed up in my muscles and fat tissue and the IVs remove all of the lumps I have built up and I can feel it and see the difference in my arms (my rt one gets so tight and painful in my upper arm/shoulder area).

I can say that I still have a long way to go but I have had some great days like you all described. The roller coaster has been hard but to be honest. I used to be at the low point with no good highs. Now I at least have some highs. I hope that's a sign of good things.

As for diet, I find that for me, being on a strict gluten free, dairy free, sugar free diet makes me feel good. I also do the anti-inflammatory and anti-candida diets. It can be hard but doable. There are a couple of websites and cookbooks out there. I think the cook book is the Healing Lyme Diet. It's by a mother/daughter combo. To be honest I bought it and have looked through it and was interested in it but haven't used it yet. The most helpful resource I've found is by another Lyme sufferer. Her recipes have been great so far and I've tried lots of new things because of her. Her site is: http://www.affairsofliving.com/

As for trying to cook for a whole family, here is what I do. I always have some gluten free options for me to eat but everyone else eats regular breads. I can eat milled corn but not corn as a veggie. I have corn tortillas around and I find some gluten free bread but to be honest, I don't crave them anymore so they mostly sit in the freezer. I am allowed stevia and agave so I do some of my own baking. The Babycakes bakery in NYC has some cookbooks. I like the first one (I don't know about the second one). I've made zucchini bread, banana bread, and pumpkin muffins all with gluten free flours and agave. They are the little sweet treat that I need every once in a while. And it isn't overly expensive to bake this way, especially if you have a local co-op where you can buy things in bulk and get small quantities to try it out. The Cravings Place makes yummy pancake mixes that everyone loves and we serve them with our melted berries.

I eat lots of eggs, I even fry one and then throw it on a salad at lunch and the yolk becomes a dressing. I eat daiya cheese as a cheese sub so that I can make chicken enchiladas, or throw some shreds in a soup. We eat lots of soups and cook up brown rice so that we can pour the soup over the rice to make it more of a stew. We eat rotisserie chickens from the grocery store. They will get us not only a meal like chicken pasta (corn or brown rice pasta) or chicken tortilla soup, but left overs are also great as lunch with some steamed frozen veggies. I make chicken salad with the remaining chicken and add Indian spices included turmeric to help with inflammation.

I also eat kefir with cereal and berries in the morning for breakfast. It gives me energy, fills me up, is a great probiotic source and satisfies some of that creamy diary I want. I won't lie. It's hard watching my little one eating or husband eating sweet treats and regular bagels. But that is why I try to have some snacks like pop corn and some agave macaroons for me to eat every once in a while. If I feel that I'm deprived of everything then I'm not a happy person and more likely to go off the diet. Hope this helps. I have lots of food ideas if you need help. I have a child with food allergies so I have a lot of experience trying to find replacements for dairy, eggs, nuts and sesame. Over time I have been able to find a way to replace things in recipes and find tasty alternatives. I'm always willing to share. It's one of the things that I love to do.

And when you can, choose the fruits and veggies you eat the most often as organic. I always feed my daughter organic dairy. If you can't do those things, focus on any foods that grow in the ground or low to the gorund and try to eat organic for those. Such as peanuts, potatoes, cauliflower, broccoli, lettuce. Hope this helps. The diet is a hard change but if you prepare ahead of time and stock your house with yummy treats for you to eat (or the whole family if you'd like everyone to focus more on healthier foods) but you can do it. It gets esiear.

Hey Mystery -
I get most of my groceries at the local grocery stores. I don't have a whole foods here so I'm left with just local stores but we have lots of good ones.

Taking the meatloaf, here is what I'd suggest:
- For the first set of ingredients, I think the Aleppo pepper is like cayenne pepper but Penze spices carries it online. You could omit it or replace with a little of cayenne.
- Coconut oil can be usually purchased in the organic section but if you don't want to use coconut oil then you could use safflower oil. If you can't find it you can order it from amazon.
- If you don't have allergies, you can use Bob's Red Mills Gluten Free Rolled oats and other gluten free products. Sometimes grocery stores carry them in their organic sections. We can't do them because my daughter has tree nut allergies but I have seen their products at our Christmas Tree Store if you have one of those. They were very cheap there. Otherwise you can buy this stuff online at Amazon or right through Bob's Red Mills.

The baked goods I spoke of did use Agave which some people use and some don't. If you can use agave, I would check out the Babycakes cookbook. Some of the recipes use Spelt but many use Bob's Red Mill's gluten free flour. They also use things like soy milk but things like that can usually be substituted with things like rice or almond milk in baking. Rice milk makes things sweeter though so you can cut the agave in baked goods. Agave is usually available in very large sizes at BJs or Costco. Maybe Sam's Club carries it too. I don't know.

Here is the amazon link to the baby cakes baked goods cook book:
http://www.amazon.com/BabyCakes-Gluten-Free-Sugar-Free-Recipes-Talked-about/dp/0307408833/ref=sr_1_2?ie=UTF8&qid=1354737494&sr=8-2&keywords=babycakes

As for cooking with kids, I have a good eater but she has food allergies. I like to try different things so we do a lot of fun cooking. I do like to cook but I don't like the time involved as I find that I don't often have the energy. That's why we use organic rotissary chickens from our grocery store to build meals. It cuts my cooking time down and we can still eat yummy stuff like chicken enchiladas. We make a yummy lentil and chard soup that all seem to enjoy as it's tasty, not spicy and hearty. http://www.sproutedkitchen.com/home/2012/10/2/spiced-lentil-soup-with-coconut-milk.html

We also love to make roasted chic peas as a snack. You can make them mild with garlic and salt and lemon or spicy. http://allrecipes.com/recipe/roasted-chickpeas/

There is also a cool website/ipad/iphone/android app that allows you to search through lots of recipes. You can either put in that you crave something or you can put in things you dislike. Dislikes would be wheat, beef, cheese, etc. It takes a while to put in everything that you don't want but you end up with recipes that you can cook from blogs all over the web. It's pretty cool. I don't omit milk or butter because you can always sub those with dairy free substitutes like rice milk and margarine. The site is: www.gojee.com

Hope this helps. I have gotten good at figuring this stuff out due to my daughter's food allergies. I still wanted to be able to eat some of the stuff that I like but that was safe for her. It's allowed me over time to figure out good substitutes for things so that I can look at recipes and sub and still create something yummy. It's not always easy, it doesn't always taste 100% the same but it is worth it when you're upset that you can't eat what everyone else is eating. Finding subs that fit my diet allows me not be mad that I can't eat food and it keeps me from cheating and thus feeling better. Good luck!

Hei everyone...
How do you feel now Traveller? Still seeing improvement?
All the best!

LV - I've removed your post as the rules clearly state "No Flaming". Please do not flame again or you will be banned.

Post Edited By Moderator (Mister Mike) : 5/19/2015 5:30:03 AM (GMT-6)