Lyme Disease Support Group

Its not fair...Give him the time and the room to vent all of his frustrations...

Since he was feeling better off treatment...I would say talk to the doc about stopping the meds...Yes...I said it...

What I have found over the years...is that some who have extreme difficulty when the treat...they often tend to be able to go back to it AFTER they take care of the diet and nutrition...

Trying to do diet, supplements, this treatment, that treatment...and so on is taxing on the body...and since he does not detox well...his body NEEDS to be made stronger so that it can fight along side of the abx...or naturals...or both...

His Endocrine system NEEDS to be brought up...I would strongly suggest a low dose of Maca daily...this will nourish his endocrine system...and it has many other benefits for the body as well...

Keep him going on that no amylose diet (however you spell it)...

Basically, what I am saying is to simplify things for him...try to get him down to minimal but highly essential things...

Juicing is great...and being able to add things like Maca to it...and other whole food supplements can really help his body to grow in strength...

Diets high in fruits and veggies...especially juicing has been known to knock the crap out of cancer...my step fathers mother beat breast cancer that way...and I have met others who did as well...

It gives the body what it needs...just be sure it falls in line with that diet...

I understand the pain...god knows I have been there...I used to be on so many meds for pain and such...that I had to sign waivers at the pharmacy...because of the high doses and such...

And LET him make some decisions in all of this...communicate with him...he NEEDS to feel that he has SOME sort of control...

He certainly can still fight this...he just needs a new approach...

Here if you need anything....

Hang in there

Christine

Talk about devastation!

I am already and have been seriously depressed, now just when I thought it couldnt get any worse....I find this out and I am telling you I too am thinking what your thinking...maybe I wont treat.

I really think I might not.

Sunds crazy to some but realistic I think when your faced with hearing the news that you have this gene.

Top it off, I did call the doctors office yet again...and the response was "we just dont know if you will get better with this gene" they also said "can happen and it cant....NO ONE can say"

I tried to talk myself into jumping off a bridge the other day....it didnt work cause the people on here said NOT to.

Not sure whats gonna happen but finded this gene crap out knocked me down 10 knotches...

I dont even wanna try.I do have to say doctor took me off the abx, to focus on detoxing

I found it very inspirational and has given me a new direction.

I hope it inspires you too!

Terry Wahls, MD. On you tube

Let me know what you think.

Nights in the ER - no memory - not being able to stand or sit because vertigo was so bad - bad digestion issues, etc.

Watching your kid in pain, especially while you are sick and suffering too, is nothing short of HELL.

The fear is overwhelming. AND I know you will keep trying your best to take the next step to help him.

I don't know exactly what that next step is ... but keep working with your doc, keep working on the nutrition and detox.

Eventually, something will help.

I'm not sure if you saw my post a while back on some topical pain relief cream that my pain management doc prescribed. It does have gabapentin in it, and does wonders for my nerve pain. Here's the thread.

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/3529621-pain-relief-awesomeness

Sending best thoughts and prayers for you both!

Betty, The ice and heat don't work when he gets to this level of pain.

Christine, That may very well be the most wise choice. We're doing the adrenal salavia test today. I KNOW he's going to have serious cortisol issues.

If we can get adrenal issues in control, figure out a more gentle detoxing plan, and start jucing, etc. then maybe he'd be ready for IV rocephin in the future.

Want, maybe you can do the diet and supplement and detox route for awhile? And then get to the point where you can go back on abx.

Rife, I looked at that doctor's video. She did a Ted talk. I loved that! Inspirational for sure.

We already eat tons of veges, berries, wild salmon, etc. But I'm sure we can do even more.

Irlen, How's your boy feeling now? This is such scarey stuff.

I haven't had to take my boy to the ER since treating... that must be terrifying to get to that point. I'll look into the gabapentin cream.

Our llmd told me yesterday that he will ALWAYS be available for my boy. Isn't that nice? Made me feel better. It can be overwhelming to know that I'm the only one here for my boy.

Post edited by: mysticthecat, at: 07/03/2012 08:17 AM

Post edited by: mysticthecat, at: 07/03/2012 08:18 AM

The only other "heat" type therapy that has ever worked for me is ultra sound..but that is cuz it gets in deep...

I think DS just gets so negative/discouraged about trying anything. Some moist heat packs used to work a bit, but with more pain now he won't even try them.

I am sorry to hear what you Son is going through, One of the hardest things a parent can go through is seeing their children suffer with any kind of sickness, It tears deep within us

Depending on how high your sons Pathogen levels are, Anything he takes could make him herx and make him feel like he is dieing. Killing these infections is not pleasant for most people, I am sure every person dealing with chronic lyme has felt like they were diening many times during treatment and it can become frustrating and make us feel hopeless

Nutrition and Exercise had been a huge part of my treatment, Along with Abx Herbs supplements and detoxing. It is a long hard road for many of us. Unfortunately there are not many quick fixes . It is a process

To just stop treatment completely can be very dangerous. These pathogens can progress very quickly and things can become much worse

I have two sons with Lyme One is 100% better and my older son has been struggling for the last two years

I know what you are going through,Keep fighting and encouraging your son daily . Things will get better

John

We will keep fighting. I will discuss each move with our LLMD. He's good. We'll get him better.

I got the ok today to work from home as long as I keep up the quality, etc. I think that will help my state of mind. I won't have to worry so much about if he's gone and thrown himself off the 95 bridge.