Chronic Lyme Disease

[kmattie]

Good Morning everyone.  I am new to this forum and have a question to post.

I have currently been diagnosed with chronic lyme disease.  I have been fighting this "monster" for over ten years.  .  Can anyone share what type of diet might help control symptoms in chronic lyme disease?

[mojogal]

Happy New Year. My LLMD told me to be sugar free, gluten free and dairy free. Honestly, I am only half gluten free and eat a little dairy.

[JackieCalifornia]

From what I read, I agree with the view that a long-standing Lyme infection as you seem to have will not likely respond to doxycycline, because doxy cannot penetrate the hidden areas (called biofilms) that the Lyme bacteria make in the body, in order to avoid being located by the immune system.  

Doxy can work in the very early stages of Lyme, but that is before the bacteria create biofilms.  Thus the need for other antibiotics like Flagyl and others which penetrate the biofilms, then allowing other antibiotics (not necessarily doxy) to do the killing.  A Lyme specialist will know that.

I just searched online for

                         --- colorado lyme diseas association ---

and got several interesting leads.  Patient groups like that often have good information about who the more progressive thinkers are in the Lyme field.  More traditional docs follow the view that doxy always works with no other 'cyst-busting' drugs to get through the biofilms.  This split in the medical community is an oddity and not like any other infection I am aware of ... but for now, we patients have to keep an eye on our Lyme docs and gauge whether the *docs* understand the need to test for co-infections that often come along with Lyme and the need for cyst-busting antibiotics.

There are many well-meaning docs who don't take the more progressive view, but mine did, and I was cured of Lyme and babesiosis [one of the common co-infections] with about a year's treatment.  

Please let us know if we can help ... I don't know what is more difficult:  having Lyme or finding a good Lyme doc!  But it's worth the hassle.  

[Ricobord]

Happy New Year to you, too!  Chronic Lyme can be tough.

I encourage you to do some research on Lyme and diet. There are books and blogs that talk about it a lot.  

I felt noticeably better when I went gluten-free. I had lots of gut issues, so I most likely had leaky-gut.  Most people feel worse when they eat sugar and some doctors insist on cutting it out of your diet.  As my gut improved, I was eventually able to add gluten back in without a noticeable problem.

You'll want to make your body more alkaline. Things like lemon water and apple cider vinegar can help with that.

Most importantly, your body and your immune system need lots of natural nutrients.  Eat as little processed food as possible and as much natural and organic food as you can.  Minimize additives, chemicals, and toxins.  You need a good immune system to fight Lyme.  Antibiotics can't do the job by themselves.  Neither can the immune system.  You need both to work together.

If you have had Lyme for 10 years, Doxy alone probably won't get you well. You probably need combination therapy or possibly even IV meds.

It sounds like you're taking the right steps towards getting well, including the idea of coinfections. (Hopefully you don't have any!)  You're welcome here.  There are many here with experience to share about fighting chronic Lyme.

[kmattie]

Thanks you so much for your advice.  I truly appreciate it.  I will need to research about the different co- infections that tag along with lyme disease.

I will be in touch !  Happy New Year to All!

[cave76]

" I was treated with long term antibiotics which seemed to take care of the situation until now."

I'm glad you had been treated with abx----- I wasn't sure. But it seems as if your remission is gone (unless you got bitten again) and are having a relapse. That's very common and those that don't relapse eventually are indeed very lucky.

Taking doxy again is a good thing, but you might also  have a co-infection. Your Lyme doctor should test for that. A co-infection might need a different medicine than doxy.

Please keep us posted.

[kmattie]

Thank you JackieCalifornia for the quick response.  To answer your question regarding me being diagnosed, the answer is yes.  Ten years ago I went through 9 months of misery before being diagnosed. I had severe headaches which ended up being viral meningitis, daily panic attaches, severe leg pain which put me in a wheelchair.  After 9 months of terrible symptoms I finally was diagnosed.  By this time the infection had become well established.  I was treated with long term antibiotics which seemed to take care of the situation until now.  

I have been diagnosed with chronic lyme and am now been treated with Exalgo and Lyrica to help out with the pain.  I am also taking doxycycline  but have not seen much improvement.

I am now going to take charge with diet and exercise, while I wait to see the doc again.

This is such a lonely disease.  It takes your life out from under your feet.:(

[JackieCalifornia]

You might try magnesium (Mg) supplements along with other vitamins, just to give your body the best level of nutrient support possible.

I also tried to avoid sugar (but still ate fruit), but had a fairly normal diet with as little junk food as possible (in fact, I gave it up altogether).  It sure can't hurt, and I don't miss the junk/fast food.

The most important thing is finding a wise Lyme doc.  Not all of them are interested in dietary issues, but I am with you -- eating well sure can't hurt.  I ate as much fresh food as possible, being sure to get vegetables, fruit, grains, and protein each day, just like Grandma would advise.

I'm glad you got a diagnosis!  It can take a long time ... it took me a year, which is nothing compared to what you have been through.  Did your doc test you for co-infections, which are 'bonus' diseases the Lyme ticks carry about half the time?  It's sometimes difficult to parse Lyme symptoms from the symptoms of other infections, so your doc may keep a close watch on your progress with that in mind.

We're here if we can help -- stay in touch!  We're rooting for you.

[cave76]

A healthy, well balanced diet will help anyone, any time. Many people with Lyme will restrict sugar and some doctors tell their patients that.

The established way (by hundreds of doctors who treat Lyme) is antibiotics.

If you have other symptoms because of allergies, gluten sensitivity or so forth, then a diet to exclude certain foods is a good idea.

Are you being treated for Lyme disease now? Your post didn't indicate whether you are or not. I hope you have a good LLMD looking after your treatment.

I hope we can help you here.