Can anyone relate to this??

When an LLMD told me he was convinced I had Lyme Disease back in March, I was actually relieved, as it explained my relentless anxiety, but I was also very skeptical. This is because I had read a lot of comments from Lyme victims complaining of bodily aches and pains, of which I had absolutely none. After taking my abx for a few months, I started feeling a lot less anxious and began having some really good days. At one point, I went almost 3 weeks without feeling anxious or down in the dumps. I thought I was almost in the clear. Then, in August, I told my LLMD that - out of nowhere - my muscles and joints were starting to hurt, especially in my knees and legs. He said it was the babesia acting up and he replaced my 2 abx with Tindamax. Soon after, I hurt my knee by simply climbing a small stair and I had to hobble around on crutches for a week. I now need to go for physical therapy. Strangely enough, during that whole knee ordeal, my mood was excellent. Now, for the last month I have had lower backaches, continued soreness and weakness in my legs, times when my wrists, ankles, and feet hurt, but (here's the awful part), the anxiety has returned and I'm back to waking up with my heart in my throat and spending day after day trying to fight a heavy heart and a glum mood. I'm seeing my LLMD this week, but he's a man of very few words...a good doctor, but very short on explanations or encouragement. If even one person reading this can relate to what I'm describing, then it will really help. I'm told that I may have had this illness for decades, so I'm pessimistic about beating it any time soon. I feel so confused, lonely, and useless. Very little family support. Many thanks.

Lyme is known to move around in bizarre ways. And believe me, it is enough to drive you crazy. I had these "migratory" pains from my head, to my eye, to my elbow, to my wrist, to my knee, etc. etc. etc. This is typical of lyme. I would strongly recommend detoxing but remember lyme cycles so it can also be the bacteria taking different forms.

Lyme is such an incredibly long crazy journey. Just when you think you are on the way up, wham you get hit again. But don't be pessimestic about beating it. Be determined and stronger than it. Keep your chin up!!

I had some muscle aching and stiffness and a little bit of joint stiffness and cracking, but never severe pain like you hear about w/ Lyme. Now, I'm 3 months into treatment and have a ton of joint and muscle pain. I think that the abx. "stir it up" and it really goes down kicking and screaming. That may be what's happening w/ you. It sounds like die-off or herxing.

Thanks for writing, springsjean. How would you suggest I go about detoxing without making myself feel even worse? It's the drops in mood that I really can't stand, especially when I had felt perfectly well for a few weeks. God, I miss being my real self.

Dan....Where would I get the activated charcoal? What form is it in? How does it work?

Hey Missyouall -
I totally can relate too. First I have a doc who is super successful but of little words. For all I know we may go to the same doc as people travel from all over to see mine too. I think others have addressed the possible issues that could be causing how you feel (and yes, I have had pains appear after 6+ months of treatment that I never had before and when I started with my doc I was in a good place and then the floor dropped out from under me).

As for your doc, here is how I approach my doc. He has a 'nurse' she's actually just a woman who fields his phone calls and emails. She gave me her email address to contact her. She can then pass everything on to him. When things have been so bad, my emails to her in the evening have prompted a call from him at 9 pm with him changing my abx regimen right then and there. If you can, ask the office about who you should contact when you have issues or concerns.

As for my doc, I send a list of questions that I'd like to discuss the week before my appointment. I basically create a notepad entry on my phone and add to it throughout the weeks between my appointment. Then I email it off to him and he has a heads up before my appointment. Finally, I let him know if I'm struggling emotionally and where my fears are. When I need more help from him I tell him what I need from him (in gentle words). I have found that over the past 7 months, he has warmed up to me, given me hugs and lots of kind words. He has cared enough to call me in the evening to help me out and though he's not my warm and fuzzy doc, he's getting results for me and explaining to me what is going on when I am specific in my questions. I have had lyme for over 24 years and was struggling detoxing. My doc is good friends with Dr. Burascano. He called him up and mentioned me to him and ended up getting some ideas. As a result I now have a new detox plan which has been working well after the first week. We will see what happens but I was appreciative that my doc was willing to reach out to a colleague to get some advice for my specific case.

If you don't feel comfortable with your doc, please do find another one. There are some great docs out there but may not work with your needs.

Good luck! You will get there. And anxiety is soooo debilitating. Once I started to get treated for Bart I started to get better but it wasn't enough. If I slip up on my diet, my anxiety gets worse. When I feel worse my anxiety feels worse. I've found detoxing is key. I did Vit. C IVs and it helped me a lot. It flushed a lot of stuff out. Find your detoxing method that works best and I think you will start to feel better.

No problem Mustelid, I'm just glad to hear that it was because of work, not because you had experienced a relapse or something!

Missyouall - I have the same llmd. Would love to compare notes and progress. I just added bactrim and feel terrible! I too wish he spoke more but am trying to stick with him as several people tOld me he made them better. Email me!
Hope you are feeling better!

I see a LLMD in NJ who also just put me on a bactrim like drug sulfamethoxazole in addition to the Tindamax. Having head & stomach aches which are annoying herxes I guess.

My LLMD also is a mad of few words but asked a question he answers so I find it is my job to make him comfortable first then ask my questions. But he seems to understand this disease.

Opugirl, just sent u a private message. In short, I don't feel good. Crazy tired, sore, achey, anxious. Definitely a bad week. :(