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Posted 9/4/2013 12:53 AM (GMT 0)
I wanted to first say thank-you to everyone on this forum who has offered me positive guidance. I would really be lost without the help I've received here.

Tonight, my mom asked, in a sort of exasperated way, if I should think about going to another doctor since I'm not feeling any better yet. I've told her that this is a long, slow process, so her comment caught me a bit off-guard.

I'm only 5 weeks into treatment, and my doctor told me that she often sees slight improvement around 6 weeks. I've been clinging to that "6 week" point for some sort of hope.

My mom then asked why I wasn't doing IV antibiotics, because her co-worker told her that's what I should be doing. My doctor never suggested that route, and I don't know that my progress would be any different if I had tried it.

So now, instead of looking positive toward the next week of "maybe" seeing some "slight" improvement, I'm totally bummed out and wondering if I'm just not going to get better- if I'm in that percentage of people who just don't respond to antibiotics.

I really wish my mom hadn't said that to me, because now I'm feeling down, and to be honest- today was not such a bad day compared to others last week. My anxiety wasn't even too noticeable today. My son was sick, too, and I wasn't getting anxious or overwhelmed. I thought that meant today was maybe... better.

I wanted to go to bed with that hope, but it got kind of crushed.

Did any of you notice some good days around this time? Do you think I'm progressing slower because I am taking a lower dosage of antibiotics? My doctor wants me to up them now, and even add another.
Posted 9/4/2013 2:14 PM (GMT 0)
Hang in there bindy, You are so early in treatment. It is easy for others to be critical when they don't understand. I still don't think my hubby understands but he supports me and I know that now whereas before I didn't even though he says he did. We are communicating better now.

You are not a burden when you are surrounded by loved ones. Try to be optimistic. I know it is hard sometimes, trust me. Cling onto that hope - and pull it closer to you. Only you can decide what is the best treatment path for you. It is hard, I know it. And sometimes I second guess myself but just keep trudging bindy.

Posted 9/4/2013 6:21 PM (GMT 0)
Oh honey I'm praying for ya. As opugirl stated a lot of people just don't understand. They really don't. It does take time...when I started out I think it took about 6-7 weeks before I saw a real shift but that was after I was trying to find out what worked for two months then we nailed it. I'm starting in my 7th month and I still have struggles. Not as much as before of course. I just try to stay positive and I'm saying this to you because you have to be your own cheerleader.

Before I get an IV I look at my son's picture and know I am doing this for him. Maybe before you take a pill or whatever look at your son, his picture and know you're going to get better.

Not a maybe...or if...but you WILL get better Binduspire.

I'm cheering for you honey!

Posted 9/4/2013 6:28 PM (GMT 0)
Binduspire, Opugirl is right...you are early in your treatment. You and I have been on treatment about the same time. Like you, I started on a low dosage and slowly upped my dosage. The changes (for the better) are not dramatic. Some improvements I had not even noticed because they are overwhelmed by the major ones like dizziness/vertigo and chronic fatigue (for me at least). What I did (and you may want to try this as well) was to copy Dr. Burrascano's list of symptoms and assign a scale number from one to five (five being the worst). Then every day when I go to bed I mark each item with a number depending on how I felt on that day for each ailment. believe it or not, I started to see improvements on some stuff that I had forgotten that I had. They were minor stuff so since I was still being impacted by the big stuff, I lost track of them. having the list showed me that I was making an improvement. And you know how I said that I started on a low dosage? Well, when I upped my dosage that is when I saw the biggest difference (well a few weeks after that). I have not herxed in about two weeks, so I was thinking of upping my dosage to 1500mg a day from 1000mg to see if I notice an improvement. If I get worse, I can always lower it back to where I was.

Right now I am fighting allergies that have jumped to the front of my list of worries. Its crazy how much damage this bacteria causes. I am so sick of it.

I hope that one day someone will invent a microwave where we can walk into, turn it on and it will kill all bacteria without harming the body. That would be so cool.
Posted 9/4/2013 6:38 PM (GMT 0)
It is frustrating, I know. I'm only two weeks in, and I'm starting to feel others (mostly colleagues) second-guess the diagnosis. I'm also questioning myself occasionally, like... am I really this sick? All it takes is something like misplaced car keys. Five minutes of searching and I am exhausted. And in the evenings when the pain comes, its unmistakable. Or, as my husband humorously pointed out, the fact that I'm home resting instead of out shopping speaks volumes. All this time on my hands and I can't even pick up a book and read, because it hurts my brain. I am usually a voracious reader.

Both my parents understand this because they have had it too. My husband is supportive, yet he does not fully understand. It makes one feel lonely. :(

Hang in there.
Posted 9/4/2013 6:40 PM (GMT 0)
I agree with the others that have posted so far - you're early in your treatment, so please hang in there!!! It's so hard when others don't understand and make comments like that that make us doubt what we are doing - but you and your doctor know what's best for you. IV abx have their complications and don't have that good of a track record in dealing with these infections - or we all would have been on them and everyone who has tried them would be healed! So stick to what your doc is doing and see if you don't feel a 'slight' improvement like she said.

Another thing - healing from these diseases is a very complicated thing - not like healing from tonsillitis or a minor infection. The bacteria that we deal with are some of the most complicated there are from what I understand - so healing is very complicated as well. It can depend on how well your body is able to detox, whether or not the bacteria is in it's cystic form, how much support your body needs while healing and more.

Just remember, these are incredibly complex infections and not many out there understand. Educating your Mom would be the best thing, as then she can help spread the right information, but if you are not up to doing that just yet, it's definitely understandable!! Just don't let the uneducated stop you from doing what you need to be doing to heal.

You'll make it! :-)
Posted 9/5/2013 6:15 PM (GMT 0)

sunny_1 said...
It is frustrating, I know. I'm only two weeks in, and I'm starting to feel others (mostly colleagues) second-guess the diagnosis. I'm also questioning myself occasionally, like... am I really this sick? All it takes is something like misplaced car keys. Five minutes of searching and I am exhausted. And in the evenings when the pain comes, its unmistakable. Or, as my husband humorously pointed out, the fact that I'm home resting instead of out shopping speaks volumes. All this time on my hands and I can't even pick up a book and read, because it hurts my brain. I am usually a voracious reader.

Both my parents understand this because they have had it too. My husband is supportive, yet he does not fully understand. It makes one feel lonely. :(

Hang in there.

My dh judges how well I'm doing by how much time I spend working in the garden. :-) When I was really ill in my late 20s, maybe with Lyme, he thought I was just enjoying an easy life since it came on shortly after we were married, or just got worse most likely. He'd come home and find dirty dishes and no dinner started, so he thought he had really misjudged me. 1 year or 2 after that, he noticed that I didn't dive into the garden work one spring like I usually did and then he knew something was wrong. I spent my time in bed or laying on the couch. I wish I knew if it was Lyme back then.

I don't think anyone can fully understand unless they go through it too. I know that lonely feeling too. Hang in there and keep fighting
Posted 9/6/2013 12:29 AM (GMT 0)
Thank-you all so much. These posts are really the light in my day.

Healing98- I like the idea of posting the symptoms list, because you are absolutely right. I had to give it some thought, but I think I do ahve some of those less noticeable symptoms that get forgotten because of the big ones like dizziness- same as you.

Traveler- you bring up some great points about how complex this disease is. And yes- I have to hang in there!

opugirl and TheWryter- you remind me to stay positive. Thank you for your suggestions and kind words.
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