Fibromyalgia in chronic lyme

Welcome carolebmw!

Sorry for the reason you're here but glad you found us. And, sorry to hear you're still having issues :(

Successful treatments abound - it's all a matter of finding what works for the individual because everybody's body is different.

I really hope that any soy you choose to consume is organic. Most soy sold in the US is genetically modified - not good for anyone.

What types of treatments have you done/are you doing? Many of us find the need to switch things around - especially when it comes to that last 10% of healing which is often the hardest to achieve.

Thank you all for your quick responses. I'm just coming off Doxycycline and starting samento and banderol along with Alinia. From your responses, I think I need to explore detoxing and the Cowdon protocol. I really am better - it took 4 years for the a Morgellons to completely heal. But have had major surg and want to be more active....

"Fibromyalgia in chronic lyme - any successful treatments?.............but muscle, facia and joint pain.."

As much as I dont believe anything the CDC has to say about lyme- they call what your experiencing "lyme Arthritis" as a symptom of what they call post lyme disease symptoms, because they dont believe in chronic lyme.

That said, I cant seem to shake the muscle, joint and tendon pain, no meds, abx, supplements - whatever seem help.

I went to a "fibro" Dr, he said its not fibro since I dont hurt to the light touch, its very deep and this is not like fibro symptoms. And it not RA either. Plus my SED rate is fine. So although I feel inflamed, I'm actually not, so he said is nuero causing it.

My muscles tighten up and I can lose motor control if I dont roll on a LaCross ball and foam roller. I also do Myofacial Release slowly-the correct way (John Barnes method). This is my EVERY DAY routine to keep moving. I have a team of Drs trying to figure it out. A Guiene Pig, I have become.

carolebmw said...
Thank you all for your quick responses. I'm just coming off Doxycycline and starting samento and banderol along with Alinia. From your responses, I think I need to explore detoxing and the Cowdon protocol. I really am better - it took 4 years for the a Morgellons to completely heal. But have had major surg and want to be more active....

When you are up to it, I would love to hear what you did to heal from the Morgellons. We don't have many people come here with Morgellons, but it would be nice to have some understanding of what it takes from someone that's been through it.

I've been diagnosed with Fibro several times with 18 out of 18 trigger points showing positive - but I hurt that bad all over, so I know that it wasn't Fibro, and I'm healed now that I've treated all of the tick-borne infections I had.

I recently (1.5 yrs ago) discovered that I had developed a soy allergy, so I would encourage you to be very careful using soy products as most are GMO and my doc firmly believe that GMO crops are starting to turn our bodies against us. I can't even use a little bit of soy sauce or eat things with soybean oil in them now.

Turmeric is great for lowering inflammation - I can't go without it for more than 3 days due to arthritis. I buy in bulk and fill my own capsules, but it you are going to buy the premade capsules, I would highly suggest that you look for one with pepperine added to it. It's a black pepper extract that helps increase the power of the turmeric.

PS tested pos for babs and bart. Hmmmmm sounds like a pair of comedians.

bluebyyou said...
You might want to look into LDN - it's helped me a lot with muscle, joint, and nerve pain. (Fibromyalgia is one the diagnoses I received, but the level of pain I was in worse than standard fibro.)

http://www.lowdosenaltrexone.org

Thank you. Will do.

Carolbmw,

You shouldn't have anything in your diet that causes problems. Food sensitivities sneak up on us like any other symptoms. Egg whites is one of the worse. Soy and Dairy protein are bad too, but really you can be sensitive to anything.

If you have Leaky Gut which seems to be universal, anything can cause an issue. My CRP (or CRP - measures inflammation in the body) was way out of whack, but he said it was not a problem compared to other patients he sees.

He put me on a (reverse) elimination diet. Only chicken and white processed rice and salt for two weeks. No spices, no oil, nothing. He said he has found these two to be the foods most people tolerate, although sometimes an egg allergy (whites are the worst) causes a cross reaction. The idea is that you let everything settle down then add one item every four days as long as you don't react. The bad part is if you do react, it will be worse than ever before but you know you can't tolerate. Sometimes after a very long time you can retry the things you reacted to over again and if there is no reaction it's safe (probably).

I can definitely attest to the "come roaring back portion." After 4 days, I felt relief from some symptoms but I had no food in the house and wasn't feeling up to going out. All I had was eggs, so I though that if chicken was ok eggs would be too. I was so wrong! I spent the entire night throwing up. I already know dairy protein causes the same reaction. Soy is just as violent a reaction except I don't throw up. Really it could be anything.

It's very restrictive and I couldn't stick to it. I lost 8 pounds in a week. Chicken and rice for three (or six small) meals a day is unappetizing. So I use a limited diet. I try to stick to things that are least likely to cause a reaction. I make sure that produce I buy is organic. I also pay attention to how I feel while I am eating and after. Pepper is a no-no. Cinnamon causes a problem with many people.

i thought that after a while when I was feeling better, I would try goat's milk and duck eggs because they have different proteins and people seem to have less allergies. Turkey is a good protein that most people can tolerate.

Don't underestimate the effect your diet has. It's not just GI. Food particles that get through the gut travel all over the body through the blood stream and cause symptoms accordingly. Pain is a prime example.

Have a good day,
Kim