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Totally rethinking treatment, what did I get myself into? Opinions please!

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Posted 1/10/2015 8:55 PM (GMT 0)
Ok. This is bad. I can't swallow, I'm in crazy pain, and there is what appears to be a long purple blood vessel in my thigh that is hard. I'm out of my mind, a total loon, and I feel like I can't breath.

What have I done to myself? Maybe this treatment isn't what is going to get me better. What if I'm one of the ones that can't do it like this? What if in 6 months from now I'm even worse off? At what point will I know that this is either working or not?

I'm not going to stop taking my antibiotics and herbs. I know the right thing to do is give it more time. But holy hell! I'm getting kind of scared. Things have went from bad to worse. And it's been a month of steadily progressing towards where I am right now.

Maybe it's just the stress, but really, how do you fix that? I'm actually in an alright mood. Well, I'm just very aware of my situation and I feel like that is a good sign. I'm taking care of myself and my son. I'm fighting my way through the symptoms and I'm not about to give up. I'm meditating and doing stretches. I'm conscience of grief and I've been doing nice things for myself and my family to ease the sadness. I feel like I'm dealing with my stress in healthy ways.

But this is much more than just stress. And I do want to know exactly why this is happening to me. How do I figure this out? What do I try or do?






(By the way for those of you might wonder the little girl I was worried about is going to be OK. It's autoimmune and shes being treated).
Posted 1/10/2015 9:06 PM (GMT 0)
Echo MM's questions—you need to be in very detailed contact w/ the LLMD… he/she needs to know exactly what is going on with you.

And—I also support the idea of stopping treatment to get a better foothold into what is going on with you (trust your instincts—my LLMD has told me at each appt to listen to my body).

I think you're overloading your system with the treatment and your detox isn'tt sufficient. There might be some housekeeping items to clear out before you are ready for lyme & co treatment. For me, that was dealing with a high viral and fungal load, which took a couple of months.

I have no idea what that means for you, though… but I think you and your doc need to re-evaluate the context for which your treatment is being approached. At the very least, give your sympathetic nervous system (primary process is to stimulate the body's stress response) a chance to breathe, recover from your mourning and stressful recent events. Help your body help you.

I bet others who are much further along in tx than I am will be right along to offer other perspectives.

-p
Posted 1/10/2015 9:20 PM (GMT 0)
He says that this is common and he thinks it's die off. He said based on my test results my load was really high. He said that all of this sounds exactly like Bartonella to him. I could stop taking my antibiotics and see what gives. I hate having to do that though.

He is so so busy. I had to remind him 4 or 5 times to get me a referral for pain management. So maybe I need appointments closer together.

He tells me when I start noticing worsening of symptoms to up my detox and rest more. And if it gets really bad to back off the antibiotics. He doesn't seem very concerned at all. Which is reassuring to me. But ya, he said let's get me on some pain management and see if I get that under control what happens.

Maybe I should tell him about the wierd leg stuff. I need to google hard leg veins.
Posted 1/10/2015 9:37 PM (GMT 0)
You need to tell him EVERYTHING. Do not be swayed or discouraged by his schedule. He's the professional and it's his responsibility to take care of all his patients but he can't do that if he doesn't know what you need or what is going on with you. He will appreciate all the info—even when he is busy, I assure you.

I email my Dr's office all the time. Sometimes it's to update them when something has happened, sometimes it includes questions and sometimes it's to remind them that I've left a couple of messages and need attention paid to something. That helps me a lot because I can email anytime that is convenient for me, there's a record of the email so I don't have to remember things and I know that they also have that record so less chance of lost info.

I'm glad he's OK with backing off abx if necessary—and I agree with you, it is reassuring that he is not concerned. However, he isn't aware of all your sx and things going on so he needs to know everything—including the life situations and other context for stressors in your life.

I say, give yourself a little bit of a rest from the abx, beef up your detox significantly (in a safe and careful way), get as much sleep as possible, watch some of your favorite movies with your son, take him to the park, get some 'me' time away from everyone and everything… and then resume in a week or so. You don't want to ratchet downward…

-p
Posted 1/10/2015 9:51 PM (GMT 0)
It just doesn't seem right for you to be having such bad reactions going on constantly. Going slower with the abx and heavy on the detoxing seems like a good idea and you should talk to him about that some more. Like others said, tell him about the loss you're going through too since that can impact your health too. We don't want to see you suffer needlessly ya know.
Posted 1/10/2015 9:57 PM (GMT 0)
I just wrote him a pretty long email. I listed my symptoms and told him I'm not thinking clearly enough to write it all down. But something has suddenly changed, and I did have some stress. I told him I figured it was a die off thing and I've been detoxing religiously. But it's getting worse anyway. I told him I didn't want to have to stop the abx and draw it out any longer than it already has to be.

Soo..... We will see what he says. My abx are not high doses at all. I was worried they wouldn't do anything at all! And I am detoxing and rotating the methods and have tried some new things. Maybe it's a lyme growth cycle? I just don't know.. I'm just really sick.
Posted 1/10/2015 10:10 PM (GMT 0)
Agree w/ MM—I should have stated that with every email I send I also follow up to remind the receptionist to check the email and print it out to share with them ASAP.

-p
Posted 1/10/2015 10:22 PM (GMT 0)
Well it's Saturday so they just have the answering machine. No one answers the phone on the weekends. He has emailed me back on the weekend before I'm pretty sure.
Posted 1/11/2015 12:19 AM (GMT 0)
IHL - When I started my treatment in July, I had a 12 day herx...worst symptom was back pain - upper/middle back...I upped the detox, but it didn't seem to help. Then I lowered my antibiotic dose as well as the Japanese Knotweed and Cat's Claw. When I did that, within a couple of days, the symptoms lessened.
Then I read some articles - that it is okay to stop antibiotics for a few days when you're herxing...and then go back. So now, I don't reduce, I stop them for a few days...when symptoms subside, I go back on.

If your Dr. says it's okay to do that...I think you should, too. Personally, I don't think it will slow down the healing - your body won't heal faster if it's in constant state of distress. Your inflammation is high because of the toxins...and that will slow down your healing.

You need a break.
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