Lyme Disease Support Group

Ok, so it's been forever since I've been on this forum... so it's time for a little update.

I went on IV Rocephin about 2 weeks ago, 5 days on, weekends off, 2gm per day. So far neuro symptoms are worse (legs/feet/butt are numb, legs are weaker) and otherwise no reactions. I'm also on Biaxin 2x/day plus Actigal 2x/day, as well as NAC, multivitamin, Omega 3 (fish oil).

I've gotten back on a healthy diet, mostly veggies/fruit and fish, some poultry, not much else other than eating as much raw foods as possible instead of cooking out nutrients. Green drink in the morning with banana, raw cacao powder, green powder, acerola powder, agave, flax seed oil, maca powder. Healthy lunch, and often just fresh juice for dinner (carrot with celery, kale or whatever else is handy). I'm feeling more energy, and wondering if it's the maca at work? Hoping I don't start turning green or orange from all the greens and carrot juice!

Bathing is a chore, figured out the easiest way is to use the kitchen sink sprayer for hair, and then take a bath. Haven't ventured into the shower yet, not quite having enough trust in the picc line cover yet.

The elastic stretchy thingy they put over the picc line was driving me bonkers, so I replaced it with a cut-off tube sock. Not sure if the elastic thingy was too small, or if it's just the latex that bothers me. Tube socks stretch out after a while and have to be replaced, but a pretty cheap fix.

Other than the bathing, the picc line hasn't been that much of a chore. I dose myself, and then the nurse comes in weekly for a dressing change. Doc visits are every two weeks, so my first checkup is tomorrow. He did the first two infusions to make sure there were no reactions, and then left me to the home IV therapy group.

Hoping that the Rocephin starts to have an impact on the neuro stuff soon! Wondering it that's the last to improve? Also having another MRI this week to check status on myelitis and spinal stenosis, to see if either have gotten any worse and thus could be contributing to symptoms.

thanks for posting

I have read many of your posts as your treatment is very similar to my husbands so your posts have come up in my searches. Your diet choices are so right on. We've spent over 18months trying to transtion our family off gluten and into a more raw diet with juicing...etc etc. I just wanted to share with you that I saw a dr speak this weekend on lyme and I found it very intersting that she said when treating lyme to avoid eating any fish, as it all contains too much mercury now. All this time i had been trying to add more!! Very intersting though and such a great point. She actually recommended grass fed meat...and to make sure they didnt "finish" them with grain (feed them grain the last few weeks before slaughter). This was all very new info to me but thought Id pass it on. Cheers with the green juice..lol. Best to you.

I saw somewhere a listing of good fish and bad fish mercury-wise, so not all fish are bad for you. I buy wild-caught as much as possible, and then eat more organic turkey than anything else non-fish. I do also eat lamb at times (part of the blood type diet), and beef once in a while. Also, I'm not eating huge quantities of protein per day, just smaller portions. Not sure how much this matters, but before I'd eat a pretty sizeable portion of fish, and now it's more of a side dish. I bought some gluten-free macaroni and cheese from a local chef today - she makes frozen meals for busy families. Figured I'd break that into small portions to fill in when I'm too lazy/busy to cook, and will add that to some veggies to complete the meal.

The blood type diet was interesting to me, but suprisingly unappealing. Perhaps with the lyme/bab the body still craves what it shouldnt have. Who knows. I am ABpos. We are doing the same thing...our proteins are no longer the main portion of the meal. I like that. Plus it will help soften the blow of buying the grass fed meats to feed a family of 5! The expense is unreal. Five with lyme in our house. The supplements are killer! Oh well. Was the gf mac and cheese good? My kids miss that one. They are not big on any we've tried.

I'm a B blood type, so the diet is pretty varied. I'm allowed dairy, so that makes it easier I think.

The mac n cheese was pretty good... she uses trader joe's brown rice pasta, 5 cheeses, some tomato and chicken is optional. Nice break from routine. I took a 6-serving casserole and broke it down into 9 portions.

People say my skin looks really good, so I guess that's a good thing. Now to get my nerves better!

Are you allowed turkey, or just beef? I like to use turkey for taco meat - use it for taco salads and stuff for an easy fix. I put in organic refried beans, then lettuce and veggies, then turkey taco meat on top with some organic salsa and a little sour cream. You can get the premix taco seasoning packets at the grocery store.

I normally replace pasta with spiral-cut zucchini or spaghetti squash, so the gf mac n cheese was a nice change.

Sounds awful with 5 in one house... can't imagine what the supplements cost must be each month!

I have a bit of a fix for mac & cheese - a real quick fix, so long as you can have the cheese...

I get a GF Quinoa pasta...a little bit more tricky then the rice pasta's - but tinkyada or mrs leepers pastas will certainly do...(which www.vitacost.com has some good discounts on these)anyway...

I also make a simple cheese sauce - I use the regular cheese slices, roughly about a package (depending on how many in the family i am feeding) melt it with a bit of butter and milk, salt and pepper - it gets clumpy...

But drop it on the pasta and my GF 6 yr old is quite happy - as is the baby, me and the others all want some of ours instead of their organic mac & cheese...

I am sure there are ways to sub better cheese product - just gotta play with it...

Lindaca - glad to hear from you...with some time those neuro symptoms will get better...

Hang in there.

Christine

With that diet I'm sure your skin looks great. It was interesting I ended up with some magazine of high end ads for cosmetic surgery stuff and very expensive treatments for any imperfection one may have ...anyway there was a whole article about the use of probiotics for acne. Too funny, also quercetin (sp?) which is in one of our supplements as an anti aging tool. We will all be gorgeous when we get our health back. lol

We do turkey and chicken but it grosses me out sometimes...food aversions big time. I am going to order from a local farm poultry, beef, pork, eggs...as soon as I have a little extra money! The supplements are easily 1000 a month...unreal!

Thanks Christine i will try that. I make queso with deli cheese and the kids love it. Great idea! Sometime subbing the healthy stuff loses the comfort food feeling...especially to the kids, they have given up so much. I send them to school with rice and seaweed these days..lol. We've come along way from our PB&J. Bad cheese will be sooo good to them! Thanks!

Well, crap... got the mri results back and the entire thoracic spinal cord is pretty much lit up like a christmas tree. Myelitis virtually everywhere. Radiologist wants to re-do with contrast and add cervical and brain. Sucks... not sure if this is all lyme-related, or if there's another raging infection going on. Hopefully will get a call back from the lyme doc to see what he thinks of all this, but not sure he's really that up on the myelitis-type stuff.