He started me on one antibiotic at a time, with instructions to change to the next one if I either plauteau or see no results after four weeks.
I have herxed on each one, but not improved. So I'm now on the third one on the list.
So far, I'm not feeling better. I'm still completely exhausted, still need narcotic pain meds to get through the day, still can't think straight, etc.
I'm worried about when I go back to see him at the end of the month and report no improvement at all.
Of course I realize that I'm not going to get better this quickly - he warned me that it could be 2-3 years, since I've been sick for so long.
But shouldn't I be seeing some sort of change?
The only thing I can think of that might be messing me up is the fact that I have pericarditis right now, and apparently have had it for a while.
Can inflammation in my chest keep me from feeling any better at all?
Is there anything I should try before I go back and report this lack of progress to my LLMD?
Posted by Dogsandcats (Member # 28544) on :
I wouldn't try anything - assuming you liked your doc - until you see him. I personally have had a period of three months where I did not feel better....
Can you call him and ask?
Sorry I don't know anything about the inflammation.
As everyone says getting past Lyme is not a sprint. For me it has been a slow journey with some periods of relief thrown in.
hang in there, we are here ---
Posted by Keebler (Member # 12673) on :
- This is not a school test and you won't be issued a report card.
It's important to not think in terms of progress as we typically do, but simply report the state of your being. Your LLMD wants to know the TRUTH.
You are not a failure for not feeling better. As he implied, it might actually be unrealistic to expect to feel better for quite some time. However, if you notice any CHANGES, note those.
Absolutely, DO tell him about all your issues, concerns, medications. The pain meds can be hard on the liver and with liver stress, pain goes up.
So, while the pain meds are needed, extra liver (and kidney) support is essential. Even acetaminophin is very hard on the liver.
At least one LLMD tells patients to avoid acetaminophin as it blocks the liver's capacity to make glutathione, and essential element that allow the liver to metabolize toxins.
Ask about getting GLUTATHIONE IVs, or how to get that into your body. Some patients use rectal suppositories as glutathione is not absorbed great by the stomach.
Gentle massage is also very important, as is gentle exercise every day. GENTLE is the key word but so is consistency. Moving in in a warm (not hot) bath, low-level "dancing" to a song you like, short walks, even across your living.
Still, pain and inflammation have to be managed but ask your LLMD how you can best do that so that you have a couple different alternatives.
Lyme causes inflammation all over the body (including the heart area), it just goes with the territory but, you should call and let him know about the pericarditis.
Are you drinking enough water? Green Tea?
Are you taking magnesium (between 1000 & 2000 mg a day, in divided doses)? It has to be divided.
Liver support? Antioxidants? Those help to relieve inflammation by helping the body's detoxification process.
Are you managing to keep candida at bay with probiotics (away from abx)?
If that is not enough, Olive Leaf Extract (OLE) can be extremely helpful as an antifungal tha also has wonderful support for the whole body, including helping to fight inflammation. SEAGATE - or Myrolea-B by White Tiger - are the best OLE brands, IMO.
I assume your diet is free of sugar, white flours, processed foods, MSG (google for ALL the names), artificial sweeteners, dyes, additives, etc. If not, you might be amazed at the improvement that can come from some tweaking.
Are you getting ENOUGH nutritional food, especially the fats? Fish oil (and krill oil) can cut inflammation and it's important for so many other reasons.
Are you on a gluten-free, dairy-free, corn-free, & soy-free diet? All those can send inflammation sky high and many LLMD suggest patients avoid all of those, at least until they are well into recovery. Such a diet often also helps cut pain.
You might also consider getting assessed for Celiac (inability to metabolize gluten), just in case that might be genetic, rather than caused by infection.
Good luck. -
Posted by Keebler (Member # 12673) on :
- Most of all, I've found it's important to love and respect myself for simply getting this far. Dropping our barometer of where I thought I should be or how I should look is a daily exercise.
Meet yourself where you are and appreciate your inner strength. It's there, I'm sure. Hold onto that certainly and keep going back to it.
Feel love, light, warmth and know that it is reasonable to hold hope for better times but, today, see what you can just appreciate about yourself, others, music, art, humor, nature.
Even when all that might seem impossible, my ability to appreciate irony has helped me cope with the "new normal". If there were comedy skits for lyme, we'd all be top contributors, I'm sure.
Your being afraid to see your LLMD because of "lack of progress" reminds me of how we have to stop grading ourselves and come to terms with what just IS, even for just now.
You may not remember a frequent skit on Saturday Night Live - but back in the mid-80's, (now a U.S. congressman from Minnesota) Al Franken was a comedian on SNL. He has a character (Stuart Smalley) who's main message to those suffering was:
"I'm good enough. I'm smart enough. And doggone it, people like me."
Remember that it does take a long time. Are you taking something for the pericarditis?? And yes, do make sure he knows about it.
Be honest, and he will do what he can to try another avenue.
Posted by kellyjk4 (Member # 19731) on :
Thanks for the replies - I appreciate the help.
I'm not sure why I'm so worried about this. I guess I do feel like I'm failing in some way (which Keebler hit right on the head).
I have been taking my medications faithfully, including probiotics.
I've changed to gluten-free and mostly sugar-free. Sugar seems to be in everything.
Exercise has not happened yet. I can't seem to make myself do more than move around the house.
When I do have to go anywhere, I can manage one place (one dr appt, one trip to the grocery store, with help, etc.) and then I'm wiped out for the rest of the day, and sometimes the next day.
All I drink is water, with lemon, and one cup of coffee in the morning.
All of this is very different from what I was doing back before I saw this LLMD. The changes started as soon as I got back home from the appt with him.
I actually didn't even think about calling and telling him about the pericarditis, but I'm going to call tomorrow.
Telling myself to just be is very hard for me. Before I became so ill, I never stopped going, even as my health was declining. I just refused to accept any limitations.
Now it seems all I have are limitations. It's very frustrating, as I'm sure you know.
In the past, I've kind of stayed away from posting very much, as I didn't really feel I have much to offer here.
Lately I've begun to see how much I need the support that is to be found here. Thanks for that.
And thanks for the links, Keebler. I'll check them out tomorrow, when I'm hopefully not so tired.
Posted by BethHurts (Member # 32708) on :
Thinking of you, Kelly. Please let me know if there is anything I can do to help you.
When do you go back for your follow-up?
Posted by kellyjk4 (Member # 19731) on :
Hi Beth - I've been wondering how you're doing. Send me a pm or email and let me know what's up with you, ok?
My appt is on the 26th, so we'll fly up on the 25th and come back the night of the 26th.
My ten year old's appt is right before mine, and my mom goes with us. There's no way I could make the trip without her.
A couple of things I forgot last night:
Keebler - you mentioned not eating corn. I had not heard that before. We are eating a lot of corn-based foods since going gluten free.
I am taking magnesium. I've found that one 500 mg tablet three times a day really helps with my headaches. So I guess that's one improvement I had not thought about.
I do remember that skit - it was hilarious. Thanks for the pick-me-up.
TuTu - For the pericarditis, I'm taking Motrin three times a day for two weeks. Then I'm to change to Colchicine and take that for the next three months.
I'm going to call my LLMD today instead of waiting until my appt to tell him about the pericarditis.