ready to give up

Hello all,

My son (22) diagnosed at 19 with all bands positive, RMSF and just last year 2012, Babesia.

On 4th LLMD, Dr. H in NY....he's actually worse, not because of the doc, he's trying his best.

completely mentally disabled....now started talking to self....hasn't "talked" in years except for "its good" no matter the question.

doctor is trying different meds which is good, some we haven't tried so that's good but he's still getting worse, gradully over 3+ years. He's taken it all...currently on plaquenil/malerone/factive

I'm not sure how much more we (his parents) can take. The money has run out and unforgunately so has my hope.

Of course we will keep going but  how much longer can my son go thru this. Besides being completely lost/confused he laughs constantly....all day....we now have to give him sequerol just to let him sleep.

this must be extemely hard on his body no less his mind.

What do we do, we are already seeing the best. What's next?

Sorry, just so frustrated that NOTHING is working. What are we missing?

His Mom

 

Hello,

Believe me, any and all advice is welcomed.

My son received multiple oral ABX....minocycline/rifampin/doxycycline/tindamax/flagyl/factive/plaquenil/bactrim DS/cindamycin/im bicillin shots/ldn/mepron/malerone/monodx/omnicef/zithormax...iv rocephin (only 2 months sporatically) iv doxy (9 months).

I have had much advice from people on forums...its all so overwhelming.

For detox...he's on chemet/chorella/medcaps and other supplements. Other than that the doctor hasn't really said much. We're actually supposed to stop that this month.

thank you

 

Hi Frikfrak (I love your screen name!), welcome to the forum!

I am so sorry your son is feeling so sick. I am glad you were able to find us.

Detoxing is as important as treating the infection, I think. Is your son able to tolerate a detox bath (Epsom salt and peroxide)?

I agree with Don,it sounds as if it's time to consider another form of treatment,many of us here are recovering using more "natural" protocols.

It might be a good idea to explore the possibilities open to your son.

Wishing your son and yourself the stamina and endurance to beat this hideous disease.

Tickled

Hi Frikfrak,

I just wanted to wish you good luck, and wish you lots of courage to continue you terrible journey...

You may find a lot of help on this forum, people here have experience with all sorts of treatment!

Marie

Welcome to the forum! I am so very sorry to hear what you and your family are going through! I can't imagine what it must be like to watch your son go through this. All the information is overwhelming, it is to all of us in the beginning. Heck, I've been here 9 months and I'm still overwhelmed! It gets easier.

To piggyback onto what Don and Deejavu said, 3 yrs. is a very, very long time to have no improvement. I saw the list of abx your son has been on--it's alot for his body to handle. I also think you should order the books suggested. I've read information on Dr. Buhner's website, I am currently reading Dr. Jernigan's book. They both come at it slightly differently, but the approach is the same: you have to build the immune system back. Also, Dr. Jernigan says something in his book that I find interesting and also have discovered to be true through experience: when the bugs are killed in the body they release toxins, and more specifically, ammonia. If you don't detox the ammonia, it wreaks havoc on all your brain processes. Given the list of abx your son has been on, it's likely that he's killed quite alot of bacteria. If he hasn't been detoxing properly, all of those toxins are trapped in his body and his brain. Once he starts detoxing properly, you may see the change you seek.

Also, your son is on Chemet? With all of those abx? Chemet is a heavy metal binder. It pulls heavy metals out of your tissues to be detoxed. I know, I was on it this week to check to see if I'm loaded with mercury from years of dental work. At any rate, I know that the first doctor I saw last July, told me that there is no way she would chelate (except for the initial testing to determine whether or not I have mercury in my system and you only take the medicine for 2 days) me until she was absolutely sure that my body was detoxing properly and not until after I had already hit the Bartonella for a bit. Chelation is very, very hard on your system. If your son is already not detoxing the die-off from the abx, and he's adding heavy metals into his system, it's no wonder he's having such a hard time. I had a terrible week this week over the chemet!! It was brutal. I didn't take the test initially in July, because I had so much brain fog, I literally couldn't understand the directions on how to get the sample. It seems ridiculous now, but I remember looking at the directions and thinking, "Huh? I can't read all of this..."

I started my treatment on abx. I took a break and went herbal for a bit and felt great. I'm back on abx and plan on hitting it for another 2-3 mos. (as long as I can tolerate it) and I'm finishing up on herbs. I believe in both routes of treatment. But I must say, Dr. Jernigan's approach falls more in line with what I believe to be true about the human body, healing and maintaining good health.

My journey reading about maintaing good health began years ago when my ex-husband was diagnosed with MS. I didn't realize that years later I'd be at it again for my own health reasons but here I am. But the ideas have stayed with me: in the human body EVERYTHING is related. One part not running right effects the whole machine. Western doctors pick and choose the pieces they want to fix. It just doesn't work that way. Please order the books suggested. If you can't afford the book, Dr. Buhner posts alot of his information on line for people to read.

I wish you the very best of luck. You have come to the right forum. You will get much support and answers to many questions that most of our doctors don't have time to answer. God bless.

My heart goes out to you. I can only imagine how difficult it must be to see your son suffering so much.

Like others mentioned, it's time to look at the whole body. At this point, it sounds like just killing the bacteria is doing nothing. His immune system needs strengthened, his vitamin and mineral levels increased. His whole body needs treated. It might be time to go another route to herbals. It may be beneficial to see a naturopath that specializes in lyme. My LLMD primarily used abx. treatment. I'm 6 months in and seeing improvement, but if I wasn't improving, I would begin to look at other options.

It also does sound like maybe your son is unable to detox correctly. There are blood tests that can be done to check to see if he carries genes that cause him to be unable to detox. Ask his Dr. about that.

When the bacteria dies, it releases toxins (including ammonia) into the body, which is why we have the herxheimer reaction when starting new medications. There are many ways to help him to try to detox, there is more info. on the "new to lyme" thread on here. It is important to start the detoxing slowly because some of it can actually cause herxing. This is what I do to detox(based on my own research and the suggestions of my LLMD):

A liver support supplement
Lots of veggies
Chlorella tablets (4 before bed on empty stomach)
Methyl B12 injections
Methyl Folate
Glutathione (inhaled via nebulizer)
Alternate daily between hydrogen peroxide epsom salt baths and sitting in my portable infrared sauna
Tons of water (with lemon if he doesn't have bad muscle pain, twitching, spasm)
Alkaseltzer Gold up to 3-4 times/day. This helps to neutralize the acidity in the body, makes it more alkaline. It's hard to find; I order it online).

I hope that helps. Don't give up. He can get better, but it may take a different approach than conventional/abx. treatment.