posted
I have my first appointment next Tuesday with an LLMD. The problem is that I am starting to worry about many things as a result of the appointment. I think I have been sick (off and on) for 30 years, but have been really sick since 2005.
I have learned to accept this illness (whtever it may be) and I know the things I can and cannot do. I know the ins and outs of the day to day, varying symptoms and what to do about them.
So here are some things that I am worrying about: ~Herxing- I have read where some are so sick for so long with herxing. I don't know if I could handle that or want my family to have to handle it.
~Not getting better after the herxing or all the meds, what if it doesn't work and I am sicker in the end?
~How do you know what to take when? How can you trust what the LLMD is doing?
~Do I really have to go glutten-free?
~Do I really have to give up sugar?
~Do you have to do the "parasite" thing before Tx or can you do it at the same time? Do you have to do it at all?
...and detox baths and probiotics or is it prebiotics and lemons and coffee enemas and rife machines and infrared heat and, and, and....
Do I have to take the detox bath on a full moon while rubbing my belly with my right hand and patting my head with my left? Just kidding, but really how do you get it all straight?
OK, breathe....
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
When I finally got my diagnosis after 15 years of illness, I also considered not treating. Like you, I had adjusted to my illness and my limitations. Treatment seemed uncertain at best, and, quite frankly, terrifying at worst.
Now, at 3.5 years into treatment, I would NOT go back to how I lived before. Yes, herxing is hard. Yes, treatment is extensive and complicated. But you get GOOD DAYS. Some symptoms resolve early in treatment. More resolve as treatment progresses.
I am a much healthier person now. Although I still have symptoms, I do not feel "sick" anymore. I have learned what combos of abx and herbs and supps work for me, so I know what I need for each new round.
I fully expect to hit a symptom-free remission. I may require further treatment, as relapse is common, but I'm OK with that. For now, I just plan to keep going.
You deserve to recover your health. Life is a different ballgame when you've got your health. More possibilites. Greater participation. No more "couch days."
Go to that appointment, and follow the doc's instructions. And keep posting here.
posted
Definitely NO SUGAR, or you will pay for that a long time.
My LLMD allowed me to back off the meds when I herxed too hard. It was a great plan that saved me much misery!!
You can do this!! Lyme can be disabling... so get rid of it!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
3 and a half years into treatment, and I am soooo much better. I would definetly do it again. I was so sick before and now I don't feel sick. I just have a couple of remaining symptoms to deal with.
I've treated mostly with a non aggressive protocol and it is working well for me.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
@mom2kids... everything you wrote is EVERYTHING I fear. You expressed it well ) Good luck to you.
-------------------- ~Lola Posts: 61 | From New York | Registered: Aug 2011
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Start slow as not to overwhelm yourself, I was in a total state of shock and fear a year ago. I am 80% better today. Living a pretty normal life. Working 5 days a week, cooking dinner for my family again, trucking through theme parks this summer with out hobbling !! After the initial 4 months of treatment I was able to go back to work.
To answer some of your questions:
~Herxing- It gets to the point where you learn how to adjust. Now I only herx when I change meds or am cycling and it only lasts a week if that.
~I have seen (from being on these boards) most of us do see improvement. I never thought I would get there but I am.
~ I seek advise of my Dr and those here who have experienced similar protocols. Some of us tolerate the meds better than others. When you need support we are all here for you.
~ I never went gluten free - It depends on the person. I also eat some cheese and dairy.
~ There are plenty alternatives to sugar. Dr. B allows Splenda. I use mostly Stevia and it is pretty good.
~I did a Parasite treatment for a few months (little or no improvement)before addressing Bart or Babs. It wasn't until treating Bart that I started to feel better. I will go back to the parasite treatment once I knock babs down. Starting soon and am nervous but have faith that God will see me through.
...Start out simple so as not to overwhelm yourself but detox is crucial. I do detox baths with Epsom salts, peroxide and grated fresh ginger on a regular basis. I take 100 billion probiotics daily. I am allergic to lemons but if you are not I recommend lemon water
~ I do the coffee enemas and an occasional castor oil packs. I feel so good after, it really helps rid your body of toxins.
I do not do rife machines or infrared saunas
My advise is to not try to do it all at once. Start slow and you will find what works best for you. The Lymenet family has been a wonderful resource and support system to me and you will be fine too.
Most important is to believe, your mind is a powerful tool. I have a strong faith in God and have prayed myself through some tough times. I got to the other side. I listen to inspirational music, attend church and pray regularly. You have to believe you will get well with all your heart and soul. When we believe we ACHIEVE.
But remember, it IS a marathon, not a sprint. There is no cookie cutter approach to any of this. You will find what works best for you...You have to go through the muck to get to the other side. And you will get to the other side. Maybe not this week, maybe not next month but you CAN do this.
Back down on the meds when it becomes too much Exercise as much as you can, but not ever day. Read Burrescano guidelines. (My second bible)
Use the love in your heart for your family knowing they are good enough reason to hang on.
I pray God gives you the courage and perseverance you need to begin knocking down these hideous infections. YOU CAN DO IT !
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Your post is exactly how I feel.. What to do? I too have had lyme for years and about 3 yrs ago became so sick, and still no improvement. All the doubts and fears I still have.
Good luck to you and keep us posted would love to hear about your visit.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
I am sorry it has taken me so long to respond to and thank all of you. I have had no internet since this post due to Irene.
Thank you all for your advice and support. I know I have to take things one at a time. I just feel so overwhelmed when I read some posts here. I will have to make a big chart so I can remember everything. I have the memory of an 80 year old, coma patient.
Hopefully my internet is back for good now and I won't take so long to respond to you all.
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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