question

lynbrez said...
I'm on a very very low dose 5mg three times a day. I was real confused when he said steroids.. I really trust him he healed a few people I know. His wife was sick for six years before they diagnosed her with Lyme. His two children also had it and are all better... so it holds a special place in his heart.
Again thank you so much for all of your help. I'm going to ask him about everything I'm taking and why.

I am not trying to get you to distrust your doctor at all, we need to trust them in order to have the confidence we will heal - but I question all doctors, and everything they give me. Drives them nuts usually, but I need to know what's going into my body and why. Doctors are human too and they make mistakes. I've been the one that has "slipped through the cracks" one too many times - that's partly how I ended up living with Lyme and company for 40 yrs.

With that said though, just because he's healed a few people surely doesn't mean he really knows what he's doing. Maybe he does, maybe he doesn't, but what I do know is that we want you to get the best possible treatment and care as we can help you get. So we always encourage members to be very active in their healing. You can ask what each thing is that you are supposed to take, you can educated yourself to understand at least some of what's going on with your treatments (even with quite a bit of brain fog!), and we hope that you will become an active part of your own healing team.

I did see the rest of the supplements you listed, but I did not see anything out of the ordinary other than you taking 2 meds for your adrenals that are duplicates from my understanding. It could cause too much stimulation or something else that I'm not aware of for your adrenals to actually heal - I'm not very knowledgeable on adrenal issues yet. I do know that when I started on desiccated adrenal, I was told by sooo many people that I wouldn't heal because they are too stimulating, but I held the course with my doc as she assured me that she has healed quite a few people this way. So maybe your doc is on to something, but you need to know why you are taking full doses of 2 drugs that do the same thing.

Also, I take a lot of B-12, but I have to use methyl B-12 in order to absorb it without throwing my body for a loop. It really can make a difference with nervous system symptoms too.

Supplements are such a person by person thing. The list of what I take daily is scary! LOL! For example, I need a lot of magnesium (most people are deficient due to the ground our food is grown in being deficient), I have to take turmeric for my inflammation, and bile salts and digestive enzymes.

I also have to avoid a lot of supplements due to a soy allergy.

I completely agree with you on trusting doctors completely - I don't either, as I said above. I was passed around from doctor to doctor almost all my life. I still see different doctors frequently, but that's because I won't put up with much now. Either they can help me or they can't.

Do go easy on your doc about detoxing though - it's amazing to me how many doctors (even natural medicine doctors that believe in detoxing!!) - really don't understand how important it is for us to detox. I was one of the first on this forum back in 2009 to start saying just how important it really is - and I got a lot of flack for it at first. Fortunately, I was not a lone voice, and it's proven itself to be a very valuable tool for just almost everyone.

That's wonderful that you got some sleep!! Congrats! Although I am very sorry that you woke feeling so poorly. That happens to me too when I finally get a chance to catch up on some of that much needed sleep. It usually goes away later in the day or in a day or two - depending on how far behind I got with my sleep and how well I sleep the next few nights too.

I had to take a trip recently an it hit my adrenals pretty hard. It was only a three day trip (one day of driving, one day of activities and one day of driving back) but it took me a full week to stop feeling like I was worse! LOL! I had a mini crash from it. I'm still on kind of rocky ground with my sleep, even though I've been in treatment for the adrenals for a while.

Do be sure to let your doc know that you are not using the desiccated adrenal though - many doctors base the treatment of their patients on past successes, so if he thinks you are using both, he will base part of his decisions on how to treat others on how you do with this. It's just part of his experience with it and I think we do other a disservice if we aren't up front with our docs - as well as doing ourselves a disservice. I'm not advocating for us to tell our doctors all, just be honest about the meds more than anything.

No, that doesn't really sound like a Lyme rash, but it does sound like a possible Babesia rash. And yes, a person can go a very long time without having symptoms - or at least symptoms they recognize as Lyme. If the immune system is still trying to do it's job, then it can keep the symptoms at a low enough level that a person could not realize they are really that sick - aches and pains that move around - a feeling of having a flu - a bit of dysfunction but not enough to really make the person stop. And since it's very common for Lyme symptoms to wax and wane, many don't connect their symptoms with much of anything.

Traveler I'm going to bring Babesia up to my doctor also. Maybe that's why I'm feeling so awful because I'm being treated wrong.
What concerns me is my symptoms don't wax and wane..well certain ones do...I'm constantly feeling sick.
Today I feel like when I'm relaxing I have this energy running through me very lightly...it's the strangest thing and very annoying. I feel like my equilibrium is off just fogged/disconnected. It's like everyday it's something. The ONLY time I catch a break is in the evening for a few hours(thankfully I get that). I would be OK if I had tingling and numbness I just hate feeling sick. Oh and my eyes are constantly bloodshot.

Peteza...June 20th in my anniversary. I truly believe there are people walking around misdiagnosed with another disease. My neighbor was diagnosed with MS and she wasn't buying it after being tossed around to doctors for six months. She was treated for lymes/Bart treated for 10 months and is not sick anymore. It's just so frustrating.

Yes its exactly like electricity!!! It upsets me because I'll try and take my mind off of feeling sick and just cant. What causes that feeling? Do you think it will eventually subside with treatment? So what I'm feeling is a constant herx???

I'm wondering if that's why my left shoulder hurts and I'll feel like pulsing in my left breast...I always think it's my heart. Gee Girlie we have lots of the same symptoms. Do you experience brain fog also? I feel off until the evening and even then I don't feel great just a tad better.

Girlie..how long did it take for your brain fog to fade away? I'm three months into treatment and I feel just horrible. Like I said I have moments where I feel just ok.
How long were you sick before starting treatment? You've been on antibiotics for a while how is your belly handling it?

lynbrez - I was sick for 15 months before I started treatment.

Started treatment July, 2014.

My brain fog was much better after a few months into treatment...and just continues to improve.

i was surprised a couple months ago, though, when I was trying to figure something out with some income tax issues...and I got suddenly overwhelmed. My brain wasn't cooperating.
So, I know it's still not 100%.

Overall, my progress has been slow...i can tell you that. Although my brain fog started to 'lift' quite early on....other symptoms have been very slow to resolve.

Approximately 15 months on antibiotics (I have taken a couple of breaks)

My stomach has been okay. Although I have had to take some of my antibiotics with food because of throat issues.

My issues with antibiotics have been with my liver enzymes. That is what prompted my first antibiotic break last April.

Three months of treatment really isn't a long time...so just keep going...know that it will get better...in time...