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Posted 2/5/2017 7:27 PM (GMT -5)
I was diagnosed about four months ago, after spending the previous eight months convinced I was losing my mind. The constant exhaustion, weak sore legs are bad, but the mental and emotional pain is absolutely terrifying. My first symptoms were mental and emotional and I tried to hide it until the physical pain got bad enough that I knew it wasn't all in my head. After going to the doctor and getting diagnosed I thought things would get easier. After four months of antibiotics the rollercoaster of terror, anxiety, physical weakness is still going on with no end in sight. This disease is so much scarier than I could ever have imagined. I used to be a strong, active man. I used to thrive on life's challenges. Now I considered it a good day if I get through the day without braking down and crying like a baby. I know other people are going through this too. I hope we can all feel good again one day.
Posted 2/5/2017 7:41 PM (GMT -5)
Yep ..i have seen some crap tooo...a member here said nam was calkwalk compared ...i have seen weird zombie crap happen to my body ..doc do nothing ... done iv abx on my kitchen table ,injecred silver ,bee venom and hydrogen peroxide into myself ..done weird mojo bs therapys like scar interferance and still at it ..welcome lost coast ..you are among friends
Posted 2/5/2017 7:44 PM (GMT -5)
Antibiotic treatment can be a nightmare, I went through it, and I don't think it did much good the way my doctor prescribed it, he was an Internist. I'm trying herbal treatments now, on my own.

One of the issues that might have been facing you, that I wasn't really aware of was that when we treat, and kill off the bacteria, etc., they can become toxic sludge in our systems, clogging up our natural avenues of dispelling them out of our bodies. There are many things that we can do to help different aspects of our body to push these things on out, rather than recycling them, which happens all to often.

Most people, many doctors even, don't know or understand the value of de-toxing, so that is one treatment method that we include in our intro "New to Lyme?....start here".

We really try to encourage everyone to read that over, it's at the top of our thread list, and there is much more invaluable info in there.

I'm glad you've found us, and am so sorry what this disease has taken away from you, but you will get lots of support here, and hopefully we can help direct you to a path of healing
Posted 2/5/2017 7:52 PM (GMT -5)
On the subject of detoxing, I spent the first 18 months of treatment popping antibiotics and drinking diet a and w. Why? Because no one told me any different and I wasn't sick enough to find my way here. I know I hindered my progress but .. lessons have been learned.

Anyway, you will get alot of good advise here ☺. Welcome!
Posted 2/5/2017 7:53 PM (GMT -5)
Another problem of long term antibiotics that you might not be aware of, is the total kill off of all bacteria in us, including the good that resides in our gut for digestion.

Two things can arise from this, overgrowth of yeast/fungal and Candida problems, and digestive disturbances.

Taking probiotics, good strong ones, will replace what good bacteria was lost. Also if that isn't enough, many people eliminate dairy, carbs and sugar from their diets, which doesn't necessarily have to be a permanent deal, once you feel you are over all symptoms for a couple of months.

Healing from these infections of Lyme and it's co-infections doesn't happen overnight or within a week or two like most everything else normally does. The variables of what will heal us are as different as our fingerprint is from someone else's.

Finding the right method, or combination of them takes time, trial and error, unfortunately, and we have to be well attuned to our own bodies to succeed, because no doctor or anyone else can fully understand everything that is involved with each individual. Even mental, emotional and physical stress play a part in how we feel and heal.
Posted 2/5/2017 8:01 PM (GMT -5)
I've done lots of research in the past year. Based on what I've read, I decided to go with antibiotics. I'm seeing one of the top Lyme docs in the SF Bay area. Currently I'm on 500 mg azithromycin once daily. 1000 mg amoxicillin 3x daily. Plus herbal supplements. Guess I have to ride out the healing crisis for a while, and give the treatment some time to work.

Do other people have a hard time in the morning? Every morning I feel terrible, usually I start to feel half decent by late afternoon or early evening. Wish I could understand why, and what to do to make waking up less miserable.
Posted 2/5/2017 8:06 PM (GMT -5)
Hello Lostcoast, I really don't have anything to add. It is a real nightmare for sure. One of the hardest things is being sick but most people just don't get it. Cancer, MS, Fibro all of these diseases get respect but not Lyme. (Of course Fibro and MS are often caused by Lyme). I think this in itself makes it a lot harder to get through.

I mostly just want to say welcome and to stop by frequently. We all understand what you are going through.

My sympathies and compassion go out to you.
Posted 2/5/2017 8:10 PM (GMT -5)

Lostcoast said...
I've done lots of research in the past year. Based on what I've read, I decided to go with antibiotics. I'm seeing one of the top Lyme docs in the SF Bay area. Currently I'm on 500 mg azithromycin once daily. 1000 mg amoxicillin 3x daily. Plus herbal supplements. Guess I have to ride out the healing crisis for a while, and give the treatment some time to work.

Do other people have a hard time in the morning? Every morning I feel terrible, usually I start to feel half decent by late afternoon or early evening. Wish I could understand why, and what to do to make waking up less miserable.


That's great! What are you doing for de-toxing? Mornings are always the worst for me. But I have bad mucous drainage to contend with after lying down for so long.
Posted 2/5/2017 8:14 PM (GMT -5)

Denikeef said...
Hello Lostcoast, I really don't have anything to add. It is a real nightmare for sure. One of the hardest things is being sick but most people just don't get it. Cancer, MS, Fibro all of these diseases get respect but not Lyme. (Of course Fibro and MS are often caused by Lyme). I think this in itself makes it a lot harder to get through.

I mostly just want to say welcome and to stop by frequently. We all understand what you are going through.

My sympathies and compassion go out to you.

Cancer, MS, Fibro all of these diseases get respect but not Lyme. A truer statement has never been made 😓
Posted 2/5/2017 8:14 PM (GMT -5)
Thanks for all the replies everyone. Its good to connect with other people who understand what it feels like. Seems like you have to experience this disease to understand it, so it's not their fault, but family and friends will never get it. Some people even think I'm making it up and wallowing in self pitty. Oh well, guess I'll find out who my real friends are.
Posted 2/5/2017 8:27 PM (GMT -5)
For detox I'm on Blue Sage, and Silphitrin, as prescribed by my doctor.. I eat organic whole foods and lots of water. No sugar, and I try to stay away from simple carbs and gluten. I wonder if more detox support would make mornings easier. I know the body detoxs at night, maybe the toxins build up and it takes time to process after I get up.
Posted 2/5/2017 8:30 PM (GMT -5)
As the Marines describe it: welcome to the suck. I would say that realizing what you have is half the battle...but it is only the start of it. There is a world of study for you to do; remember that only some of it will pertain to you. EVERYONE IS DIFFERENT! Your millage will vary. Be aware that some things will work better for you than others. There is no one single way. There will be your way. It may be similar to my way or anothers' way, but it will be different for everyone. Persevere.
Posted 2/5/2017 8:32 PM (GMT -5)
Ya mornings are ruff...i use b12 injections ,b pollen ,ginsing and others to work the adrenal fatigue ,cortisol inversion due to the inflammation resonse ...you may need a cyst buster eventually and to address the coinfections ..which amox wont touch

some people use prescription stimulants...maca and the like for me

Post Edited (bluelyme) : 2/5/2017 6:35:17 PM (GMT-7)

Posted 2/5/2017 9:21 PM (GMT -5)

OldSalty said...
As the Marines describe it: welcome to the suck. I would say that realizing what you have is half the battle...but it is only the start of it. There is a world of study for you to do; remember that only some of it will pertain to you. EVERYONE IS DIFFERENT! Your millage will vary. Be aware that some things will work better for you than others. There is no one single way. There will be your way. It may be similar to my way or anothers' way, but it will be different for everyone. Persevere.

Well said!!

Welcome lostcoast glad you found the site but sorry to see yet another fellow Bay Area member. There are many of us. We are fortunate to have a number of great LLMD/ND options to chose. Glad you found one and have started on your path towards health.

This disease definitely takes it's toll on relationships. For friends who don't get what you are going through the best article I've read that's from a known resource is the one in Men's Health. Just google Lyme, Men's Health.

I've found that getting up and getting moving helps. Not that I'm great at the getting up part. My bed is comfy and my blankets are soft and everything hurts when I move so I s t r e t c h getting out of bed out as long as possible. Once up I've found that when it isn't raining (who'd have thought) that taking a walk in the cold air and getting my system going really helps. I put up beat music on that gets me in a good mood and walk for 10 plus minutes. The cold air helps with vagus nerve issues and I know I deal with some of those.
Posted Yesterday 11:13 PM (GMT -5)
On fear and socialization, knowledge is power and the more we understand about these pathogens ,the more we educate ourselves about phamacology ,microscopy ,herbalism, alternative therapies the less strangling grip these infections hold . Seeing apitherapy and longterm abx work to aliviate the horrid symptoms that is lyme has given hope and empowered people to go beyond their doctors .
To seek answers to the unanswerable is what has gotten us to this point in our journey. We are the people who would not take no or "I don't know" for an answer .
We are the front line ,we are the guinea pigs ,warriors of the future, past and present state of healthcare. So i raise my lemon water in toast to the hand holding mods ,the realism of the sufferers, to another abx down the hatch or bee sting or hyperbaric dive or obscure substance done intravenously ...forgive my crassness or my assumption that everyone thirsts for satisfaction the way i do but the learning curve is steep and the slope of lyme even more slippery.thank you healing well for walking with me .thanks for upping the ante .thanks for letting me be of service .i will try to sugar coat with compassion a little more .
the difference between fear and courage is that the courageous feel the fear and do it anyway.

Post Edited (bluelyme) : 2/6/2017 11:42:07 PM (GMT-7)

Posted Today 9:43 AM (GMT -5)
I can relate ro everything you said. This is a horrible disease. I cry every day, some days more than others. My mornings are horrible. I haven't had a good night's sleep in months. I know stress makes it worse, but I am constantly worried about how we're going to pay for all of this. I am paralized by the fear that I may have passed this on to my children. I don't think i could live with myself if one of them got this from me. I just have to hold on tight to the thread of hope I have and rely on my faith. I have to believe that I will get better.
Posted Today 10:14 AM (GMT -5)
I just wanted to say welcom, Lostcoast, and I'm sorry for what you are going through. Lyme is definitely scary, but you found a great place for support and advice! You're not crazy and you're definitely not alone! The people here are wonderful, knowledgeable and compassionate. Don't be afraid to ask questions or just vent...we're all in this together. Hang in there!
Posted Today 12:30 PM (GMT -5)

Lostcoast said...
For detox I'm on Blue Sage, and Silphitrin, as prescribed by my doctor.. I eat organic whole foods and lots of water. No sugar, and I try to stay away from simple carbs and gluten. I wonder if more detox support would make mornings easier. I know the body detoxs at night, maybe the toxins build up and it takes time to process after I get up.

Can you work in some activated charcoal tablets at bedtime? That or bentonite clay are good for pulling the crud through your digestive track, but must be taken with a large glass of water and a minimum of 2 hours away from consuming any meds, probiotics, or herbs and food that you don't want to get sponged out.

What about some dry skin brushing before bed with a natural bristle brush, and keep lemon water at your bedside if you get thirsty in the night.
Posted Today 2:43 PM (GMT -5)
Pmm73 ...either way it will be ok...we are here
Posted Today 6:01 PM (GMT -5)
Yes, DS had horrible mornings the first 6 months of abx treatment then summer came and he got much better. This fall he has 1 chronic fatigue day a week but otherwise can get up just fine. Hopefully you will find the same. Those first months were brutal - hang in there and detox as much as you can.
Posted Today 6:55 PM (GMT -5)
Welcome to our forum. I am truly sorry that you have Lyme. I'd like to share with you a few things I have experienced or noticed since joining this forum 5 months ago.
1. There are people on this forum that offer much needed support to all that ask or reach out for help in their most desperate moments.
2.There are members here that have excellent textbook like knowledge of different treatments and protocols.
3.There is an enormous amount of experience when it comes to dealing with Lyme and it's co-infections.
4.If you have questions about anything, just ask and so many step up to help give insight or answers.

There is so much more. Your not in this battle alone. I pray you have better days ahead. I am so glad you have found this forum. Sincerely, Jo
Posted Today 8:09 PM (GMT -5)
Lostcoast,

Welcome! You are not alone and if we were all in one place our collective tears would cure any drought.

You found your way here that is the good news. The Lyme angels on this board have saved my sanity and have been more helpful, and at times more knowledgeable, than our LLMD!

My entire family is healing late stage Lyme and it is so different for each of us.

You are still a strong and active man. You have just been sidelined. The first two months of treatment I was pretty much bedridden. February began month eight for me. Much better than July but a while to go. My son is in week 13 of treatment and having a very, very hard time of things. You WILL get better.

I noticed you are on Blue Sage are you doing the Jernigan products? I'm doing them as well.

What helps me in the mornings is Eluethero, start slow. I also make a smoothie with Spirulina Mana. I can feel it waking up my cells. My son even asks for it now, when he wakes up. Rishi green tea helps me. It s a pure green tea. Many other have contaminants. Green tea helps with Lyme.

I was on here all day, every day the first few months. The wonderful angels on here have undying patience. Lyme is a steep learning curve.

Oldsalty: Cracked up at 'The Big Suck' - best laugh of the day.

We're here. It gets better and you can heal. The body wants to heal itself.
Posted Today 11:34 PM (GMT -5)
Thanks for the warm welcome everyone!

The blue sage and Silphitrin are from Jernigan. I'm not on the complete protocol, just these two my doctor recommended. Appearently they are mostly for for neurological detox. So I plan on adding something for whole body detox as well. Seems like a good idea to get something like clay or charcoal moving through the system at night to help absorb totoxins. Might help make mornings a little easier.
Thanks for all the suggestions, lots of stuff for me to learn about.
Posted 2/8/2017 8:35 AM (GMT -5)
Jernigan is having a big sale the next three days. You may have received the email. I have BS but haven't started it yet. I was started on Borrelogen, Lymogen, Neuro-Anti-Toxx.

Activated charcoal is great for toxins. You have to take it two hours away from food/drink on either side. Many of us wake up in the night, take it, drink 8 oz. of water and go back to sleep.

Like all things Lyme it's not for everyone. My son can't tolerate it. Hopefully you can.

Feel better.
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