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Posted 1/21/2015 12:14 AM (GMT 0)
I am having a lot of trouble trusting the diagnosis and trusting my doctor. I have been sick for over six years (I am 19 now) and have gone to so many doctors and I have been told so many different things. I now go to an LLMD and I am constantly second guessing myself and my doctor. I have my third appointment tomorrow and I am kind of freaking out. I feel so sick since starting the antibiotics and I am feeling depressed. My symptoms seem to be worsening by the week and I am just feeling so discouraged. I just wish I could look into the future and see if everything will be okay. My mood is changing and I feel annoyed all the time. I am also having ear pain and sensitivity to sound. My brain is a mess. I feel like my brain isn't connected to the rest of my body, like I am disconnected from the world. I am so thirsty 24/7 and I seem to have no warning before I have to pee. I also feel so uncomfortable in my abdominal area. I drink so much, but it is never enough. And I just went from having diarrhea (when I wasn't on any antibiotics) to constipation (now that I am on antibiotics). I am losing hope. Sorry, just needed to vent. But my question is: how do you trust your doctor when so many doctors have been rude, mean, or just given up on you in the past?
Posted 1/21/2015 12:31 AM (GMT 0)
twinmkm—

I am so sorry that you have been sick for so long and that you are having such a miserable time. Treatment can be so tough most of the time—especially when you are doubting that it's working.

Everyone has a different journey through lyme & co treatment. But one thing we know is that your symptoms and how you're feeling during treatment can ebb and flow. The microbes you're killing have a life cycle and the die off of the microbes also creates other symptoms. It's a bit like a maze.

Since you're on abx, are you also taking care of your gut? Are you on high doses of various strains of probiotics and being proactive against yeast/fungal overgrowth? Some of your sx sound like yeast/fungal overgrowth… So if you suspect that might have developed, you need to act quickly to address it before it gets worse and completely overwhelms your progress.

Also, are you detoxing effectively? We've had a lot of really good conversations about that lately.

But to answer your specific question—
I do think it's important that you believe in your lyme specialist AND in the protocol that you have developed together. Are you confident in your steps leading up to finding the LLMD? For instance, did you have an EM rash (pretty much definitive for lyme)? A positive IGeneX WB? What are the other things that you can remind yourself led you to him/her?

Hang in there. I'm sure others will be along to offer wisdom. We have ALL had a difficult phase during treatment so it's often a matter of stepping back, reminding ourselves of our path and staying focused. Posting is really good therapy, too. ;)

-p
Posted 1/21/2015 12:56 AM (GMT 0)
It really sounds like you are herxing, Twin. What abx are you using and at what dosages? What are you doing to detox?

And when you are that unsure about your doc - you come here. We can tell you if your doc has no clue or if you should hang in there usually! Just be prepared for a hundred questions and for several opinions to be posted!! We all have different experiences and by us sharing them, it can help you decide what you may need to do.

Hang in there!!
Posted 1/21/2015 5:20 PM (GMT 0)
Sorry you are going through this, I really hope it gets better for you soon, I had those same exact symptoms and I know they are no fun but I was able to ease them out just a bit eventually, anyway you will find good support on this forum with helpful people, I did. You can also email me if you would like to as I had a very similar experience and can try to help you with that. And I know it is very scary right now but hang in there, hoping you heal soon.
Posted 1/21/2015 8:34 PM (GMT 0)
I went to the doctor this morning and he said that he thinks my bartonella surrounded itself with a bio-film and we need to attack the bio-film to get to the bartonella. He also diagnosed me with babesia. He added four medications so hopefully those will help. I also got an IV today of Vitamin C and another one for detoxing (I am not sure what all was in it). Hopefully things will get better soon! I am trying to be more positive now, but it is so up and down for me. Thank you all for your support! I am so glad my mom was there with me today and I am glad today went so well. I think my doctor finally realized that just because I am young doesn't mean I am in a better situation than someone with the same problems who is older than me!
Posted 1/21/2015 8:51 PM (GMT 0)
Twin,
I don't know what dr. you see, but most LLMDs are v. knowledgeble. I think many of us are in doubt at some point. My dr also treated me for Barto, which I tested negative for. He was right, not only lyme was giving me the symptoms but barto also. Many people here report improvement after a treatement for other bacteria besides lyme is followed. Tell your dr. ALL your symptoms and do your own research as well. Barto is still giving me troubles once in a while, even after treatement. Perhaps because I wasn't treated for it as aggresively as for Lyme and from the start--I was treated for lyme 2x and for barto 1x. Nevertheless, my dr. was smart to treat me for lyme and barto, although at times I did question his judgement. You MUST tell your dr. ALL your symptoms so that he can figure out if a co-infection is present.

If you treat only for Lyme and you do have co-infections, don't expect to recover 100%, as I am sure you know abx for lyme don't cover all co-infections. Sometimes we have to trust drs but we should also do our research. Best of luck!
Posted 1/22/2015 2:03 AM (GMT 0)
You will have ups and down's. What you MUST understand is that as bad as the down's are you must NOT give up. I hear the desperation in your voice and I understand it because I have been there and currently am there. Here is what is in your favor...you are young and your body wants to recover. You are responding to treatment if you feel lousy...and apparently you are feeling really lousy! So...hang in there. You MUST tell your doctor EVERYTHING that is going on. Journal it so you can remember it. Your doctor CANNOT read your mind and if you don't tell him then he won't know and know how to treat new symptoms. You will be ok....just keep reminding yourself of that even if it feels like a lie. Eventually, it will be the truth! God bless you. You have lot's of things to do still in life....get well and go do them! :)
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