I need advice. I don't know how to move forward from here. clamming up :(

Ok. So most of you know that I've had a really rough time. Treatment after 8 months left me more sick than when I started out. Finding out I have MCAS and getting treatment for it has been life changing. I don't know if it's a fluke that I feel so much better or what.

It's an incredible turn around the last few days. I feel a thousand times better since stopping Lyme treatment and only taking medicine for the mast cell issue.

My llnd thinks that I should treat for babesia and parasites now in conjunction with lyme. I'm worried that starting lyme/co treatment again is going to send me into a tail spin and pull me out of this new found healthy streak. It makes me question whether lyme was ever the bigger issue.

I'm left feeling like Im doing better because I'm getting the medicine my body needs in regards to MCAS and the killing has stopped for lyme. My worry is that if I don't keep pushing forward with lyme treatment I'll wake up a few months from now back at square one with symptoms. On the other hand I'm worried that starting is going to only make me feel sick without any real progress. Ah!!!!

Maybe it wont.be so bad like before if I do both treatments simultaneously. But what if it isnt? Today I woke up with bad stomach cramps and a little headache. They both subsided pretty quickly. This afternoon I ended up feeling like I had 2 ice picks stuck in my head and face. So... ya. I don't know what it from what. The testing all sucks. I have no way to tell. I don't know what to do. I'm stuck in a rut.

I'm terrified. I don't want to backslide any further. It was way past my limit and my doctor could only tell me it was normal. But it wasn't normal! I had a different disease on top of it! I don't know if he is qualified to take care of me. He said he is still dedicated to getting me well. He's a nice guy.... I really like him. I'm just really scared. I can't blame him really because the symptoms do overlap. But if almost dying is the only way to get to the bottom of what's really going on I'm just not comfortable with the situation.

Am I overreacting? What do you guys think?

I would definitely let your body heal awhile before moving on and just add 1 thing at a time slowly.

I don't remember but did you have Igenex testing for Lyme? If not then maybe this other thing was your problem.

Glad you feel better!

IHL, I would rest and focus on the MCAS for awhile. Do you feel that your current doctor is adequately addressing the MCAS? Again, I don't know anything about that condition, do you need a specialist for that?

I'm so glad I'm a part of this forum. Your input really helps to put things in perspective.

My doctor did say we needed to slow down and change things up. he said he wants to see me ASAP to go over risks etc....

I had a bad night. I think my mcas will stay pretty reactive due to the Lyme itself. I think after researching some more both need to be treated simultaneously. They react to each other. I did not sleep. Horrible stomach cramps and restless legs. Peeing a thousand times. My stream is so weak and it's filled with stringy stuff yet I have no infection. Besides Lyme and company of course..

I want to press pause and really dig deep. ... yuck.

Whatever you decide, please proceed slowly and carefully. I'm concerned that your dr let it get that far and that he may be in over his head.

However, if you chose a different LL, you need someone who can pay more attention to you than the average patient requires. Maybe you can look into whether there are any other LLMD's who you think would be a good fit.

Just be careful and take very good care of yourself. Don't push yourself to the edge again because we care too much about you. :)

Hopefully, you're doc is more clued in now to what is going on with you. I also hope he will make the effort to learn more about your MCAS and its interractions with Lyme and Co.

Try not to be scared and frustrated. Go slowly with one new thing at a time. If something feels wrong or like it is too much again, you need to trust your gut and get help.

If he knew about MCAS, I wonder why he didn't catch it sooner. I hope he will be more cautious with you now. Has he checked your adrenals? You've had a lot of stress that could impact their function.

Try to take some breaks from thinking about it and enjoy the sun breaks. It's not easy to do, but it would do you some good. I'd really like to see you be able to enjoy mother's day this coming Sunday.

Ugh.... I feel like whatever I decide will majorly effect the rest of my life. I might be done with abx.

What is the treatment for babesia and parasites like? Maybe I should start a new thread on that to get more traffic.

I have the most horrible stomach ever. I'm up all night peeing. My head pain has been minor considering. Just like a normal headache not beat my head against the wall type.

I'm still feeling pretty indecisive. I've decided to write my symptoms down everyday for a week and then send it to my doctor. Hopefully that will she'd some light on what's really going on. I've been communicating with some mcad people to get a better perspective on what that does to you. A lot of them have been diagnosed and treated for Lyme and have very similar experiences to my own. They just never got better with treatment, and not for lack of effort.

My fear is not treating my infections and getting sick from them somewhere down the road.. my other fear is trying to treat both and never getting better that way either. If it takes years how will I ever know the difference? I don't know if I want to give up that much of my life with no certainty of getting health at the other side.

Right now my symptoms are manageable. I can stand to live like this. But should I settle for manageable? If I have a chance of regaining my complete health I should probably go for it. I'm 26 I'm still pretty young. I still want more chilDren. I still want to work. If it takes 2 or 3 years to get well that means I'll be almost 30. My 20s will have been completely forfeited to these stupid diseases! That's still better than the rest of my life.

But on the other hand as far as I understand the mast cell stuff is something that never goes away. And the symptoms overlap Lyme symptoms. How will I ever know for sure what Is from what and if I am healed from infection?? Drives me absolutely crazy! Are you as confused as I am yet? ***?!?!?!?!?!

Maybe ill never get to have another kid. Maybe I should give up on that. Maybe it would make my life easier to bare if I just gave up on certain things. It's just not in my character to do that! My son and I both almost died and I don't think I could live with myself if something like that happened again. I still feel guilty and responsible for what he had to go through. I tried to bargain with those doctors the whole last half of my pregnancy. They didn't believe me and we almost paid with our lives... I have a feeling that happens often. It breaks my heart knowing a lot of that could've been prevented had they taken me seriously..

I feel ruined. I feel.... broken. Faulty. I've been the squeaky wheel in doctors offices for years and look at me. I just keep getting worse no matter what. There has to be something out there that will help. Right now I feel like giving up. I'm exhausted. I'm spent. I want life to be about more than being sick. I want to have other things to think about. I'm so over this.. I can't keep putting my family through this.. ugh.... This is what nightmares are made of. Stuck. Stuck. Stuck.

I'm sorry IHL. I wish I had some answers for you. I think you can beat this, but it may take another doctor on board to get you through it. Are you near Medford or Roseburg? I know LLDs are hard to come by down there, but I might be able to contact the head of the Eugene Lyme group to see if she knows of anyone else that could help you.

I forget, have you had adrenal and thyroid tests? You've had a lot of stress, so they could be impacted. My memory hasn't been great, so I apologize if I've asked you before.

Hang in there and don't give up. We're here for you.

Hi IHL-

I don't think you should be afraid of the slow and less aggressive approach to treatment, regardless of the doctor that prescribes it. It is just the route some of us have to take, myself included. Going slow allows you to back off and regroup and assess without pushing the limits of your health.

Think about this...what is your end goal with lyme treatment? To get better right? But we know that lyme is likely to never go away 100%, it is just a matter of beating it down to a level where our immune systems can keep it in check. But in order for our bodies to do this, we have to take care of it and support it. Get the good gut flora back, let the liver heal, etc so that once you have completed abx, your immune system has the strength to do its job effectively for the long haul.

Take the time to rebuild right now while you are going slow. It will give your body a little break as well as your mental and emotional states. Detox, take supplements to support the liver, rebuild your gut with probiotics, bone broth, gelatin, supps, etc. Don't feel guilty about nurturing yourself right now, you need it after all you have been through!

You will pull through, I am sure of it. You are young and smart and incredibly resilient! I have faith in you!