Update. Saw the LLMD yesterday. Shaken a little bit.

Yesterday was my big day seeing an LLMD for the first time. I honestly don't know what to think. I'm so confused. I was glad that I had my prior lab results (western blot I believe) faxed over to the LLMD ahead of time. I was definitely positive alright. I was told years ago that I was "barely positive" and the LLMD said "How about definitely POSITIVE"

He also performed some type of "centering chi" type of thing with my husband and I and said I have a candida overgrowth. I'm honestly not sure how putting his hand on my husband and me at the same time while doing some kind of resistance test would help to tell him that, but hey..he's the expert. I already had suspected a yeast overgrowth due to several issues. Here's where I'm very confused. He gave me a list of anti candida foods. He also has started me on doxi 100 mg 2 x per day and some Acidipholus (sp?) 4 pills per day 2 hours after I take the doxi. 

Back to the list. It says I can't have any soy products or mushrooms which makes sense..no sugar, lots of No no's, that's fine. But it says I CAN have potatoes (not sweet) brown rice, barley, wheat, millet, oats, rye, triscuits, potato chips, corn chips, shredded wheat, eggplant, beans, corn, etc..I'm so confused. I was told to stay away from all starches. And also, I looked on a website for anti candida type diet, and it says no to all this stuff like brown rice. I haven't been really touching starches for like weeks now. I don't want to go back and destroy it. It says NO to dairy which I have been doing a little bit of, and I will have to give up. That's fine. It upsets my stomach anyway.  Is anybody else here on an anti candida diet and what does their list look lke? How long did you do it for? I'm not complaining, just making sure I'm doing the right thing before backpeddling on my diet.

Also, many of you know I've been having some scary chest/heart pains. Well, the LLMD listened to my heart and said, "You know you have a heart murmur right?" He didn't seem that concerned and didn't say anything after. When I questioned it, he said to check with a cardiologist. Which of course I will. Does anyone else have a heart murmur? Nobody has ever told me that before. He said I was too weak to exercise right now. He said things would get worse before they get better, but if it got too bad, we'd back down a bit and then go back up again.  

He took bloodwork for coinfections and such and the results will take about 2 weeks. He wants me back in one month.

I'm overwhelmed. I was afraid to ask too many questions. I had all these different questions written down and chickened out on many of them because I felt a bit rushed and overwhelmed. He is a busy LLMD with a LOT of patients in the waiting room. Don't get me wrong, I'm not angry, just overwhelmed and confused. Sometimes I need a bit of hand holding. I'm just confused. I guess the doxi treats the candida issue too.  He said we'll get more agressive with treatment over time. Scares the bejesus out of me. I was expecting more answers and homeopathic recipes and answers to my anxiety. I actually had to call the office after I left to ask what I had forgotten to ask for............anxiety medication. They called the script in. I'm confused. So confused. I don't know what to think anymore. I was also told to stop taking cat's claw. (I had just started) He told me not yet, it would mess me up. Maybe that's why I've been even sicker the past few days.  I'm so flipping fragile and overwhelmed. I want to crawl in a corner and surrender to this all.

So that's my day. I have no idea what to think. I just wish I had more explanations. I know it's me, not anyone else..not the dr, not my husband, not anybody...just me. Maybe I really am crazy now. I don't even know. I have no idea how I'm gonna get through this when things get worse.

 

 

EXERCISE - generally, Dr. B states no aerobic exercise until you're better. BUT, this sems to apply to people that had no prior exercise/fitness base. Aerobic exercise, if you have that base, is a highly effective means for killng the pathogen (heating the body), driving the blood deeper into the tissue to get access and kill the critters, aiding with detoxification (sweating through the skin) and boosting the immune system. Again, as everything with this blasted disease, you need to find what is right for you. And Summer3 is right, different LLMDs will have different opinions on the matter.

SleeplessNJ - you will get through this! I know it seems overwhelming now, but it will get better - we Lyme-folk have all gone through the very same questioning, crazy-feeling, and uncertainty that surrounds this disease. But, you will prevail...your body will take care of dispatching the intruder once you get a plan and treatment straegy going...from there you can adjust to meet your individual body's needs. Hang in there, my friend!

Post Edited (yazzer) : 3/2/2012 12:34:13 PM (GMT-7)

Oh and I did ask about diflucan and he said not yet you're not ready

It's really nice to have this forum and friends with others who understand me and to not be embarrased. It is so comforting to me. Thank you both so very much for your replies.

LoveHealth--That's exactly what he did. It's funny, my husband and I both had a very hard time understanding what he was asking from us. I was resisting as best I could, but I am not sure that's what he wanted. I hope I did it right because my husband took awhile to understand. AH..first he asked me to do it, then he asked my husband probably because I am such a dimwit. LOL

The diet definitely makes me leary. I ate a very tiny a mount of brown rice today and some corn chips (all natural but not as tiny of an amount HA) last night after I got the list. *shrug* But I feel like utter crap now in my stomach. It feels VERY mad at me. I have my time of the month right now (sorry I know TMI) so it could be that too. But my stomach seems very tender. Even more than usual. So I think I'll stay away from the starches still as much as possible .

And I know I'm going to have to be patient and open minded. I know. I have to trust. It's hard because I am controlling and want to know EXACTLY what i'm in store for, and everything I can possibly know right away because if not, I worry......and OBSESS. Not good on my pain or fatigue or all symptoms.

I have to try and calm the **** down!

I'm also a little anxious because the LLMD said he would have an online or mail order pharmacy call me within 24 hours, so I that could get the pills for only $10 most likely if approved (which he said had great success) 24 hours later, on a Friday..LLMD is closed and pharmacy didn't call me. The LLMD gave me 4 days of doxi as a sample, but I don't want to start and have to stop, so I haven't started the doxi yet and I have to wait till Monday to contact my LLMD to discuss that so I can get a start and make progress for our next appointment.

Yeah it's a real problem for me. 

I'm trying. Easier said than done with my rage and frustration, but I'm really trying. The problem is and I told this to my LLMD, that when I try and reel my anger in and control it, it ends up being MUCH worse for me. It seems trying to control it, only puts strain on my body and causes a horrible herx or something. I don't know. I am just really messed up it seems.

Hey Sleepless,

Well, I didn't have candida before I started antibiotics, but I had some issues while on antibiotics, and my doctor didn't take me off- he just added diflucan. So your doctor is probably trying to balance candida, keeping the lyme from getting worse/treating you but not being so aggressive he overwhelms you.

It is overwhelming, but the appointments get easier! And remember- at this point, a couple days delay is not so bad. You have a diagnosis. You have a doctor. You will get treatment- it just might take a little bit to sort it all out.

Thanks again everybody.

Zeusy--I think you're probably right that it will get easier over time. I'm just a nervous wreck and want to make sure I do the right thing for myself this time around.

Jess--I appreciate you sharing what works for you. I will mention it and keep it in mind if the doxycycline doesn't sit well with my stomach.

april--great to hear your feedback. Really...it means a lot if we're seeing the same LLMD. I just expected on a 1st visit that I would get more time and some good diet suggestions and detox and a game plan. I got none of those.
Did he start you off at 100 mg 2 times per day too?

"I don't just pop pills because I "trust" the dr knows what he's doing. I research."



I am the same way. I have never needed to take any medications for anything other than a minor infection occasionally over my lifetime. However, I think sometimes that my research increases my anxiety especially when I read about all the potential side effects of every medication. That doesn't stop me from looking things up for myself though lol.

As far as the diet goes, I would do what you feel comfortable with. As long as you can maintain a healthy weight by eliminating foods that you have researched to be problematic, I don't think there is a problem with creating our own diets.

My LLMD was not overly concerned with treating yeast or detoxing either prior to treatment. I was pretty worried after my first appointment as well because my protocol was not the same as a lot of other people, so I had some anxiety and doubts.

I became more comfortable over time. I found that asking questions made me have more confidence in my LLMD because I could base the answers against research I had done, and fortunately the answers matched up most of the time. If they didn't, a logical explanation was provided. My LLMD never seemed bothered by any of the questions I asked, and some of them were pretty unusual and difficult to answer.

It's definitely a tough situation when you are first starting out with a LLMD. He may not have known how much research you've done prior or how aggressively you wanted to treat. Sometimes they like to start slowly and ramp up so they don't overwhelm patients.

He may be a really great LLMD with a plan in mind that is really effective or it may just be that he doesn't align with your treatment goals and that's okay too. Do you have another appointment coming up that you could use to address your concerns about the meds and diet with him?

I think my first appointment was about 90 minutes long. I had prepared a chronological list of my symptoms that was about 5 pages long that I just handed in. I had a hard time remembering the questions that I had. I was really nervous about the whole thing and I pretty much blanked out and didn't ask much at that first appointment.

The next few appointments went better. I decided to write down all my questions and also print out a summary of my symptoms and how they change between one appointment and the next. The summary really helps because it's easy for me to forget certain symptoms and it's sometimes difficult for me to determine which ones are important to bring up. I have a ton right now so I just write them down in categories making sure to highlight any new or severe ones and hand it in. The LLMD can then look it over and decide which are important and which aren't and it leaves the majority of the appointment time open for asking questions and going over any changes in the protocol.

Sleepless,
I really felt a need to tell you that you're not alone in being too ill to start treatments. I had to rebuild only for the first 9 months because my practitioner was too worried about my over all health! Allow your doc to take the time to build you up before you start treatments for the tick-borne infections - I seriously doubt that you'll regret it. I know I sure haven't!

LOL Sleepless!!! You're too funny!! I'm the forum xanax now, huh??? LOL! I'll just take that as a compliment, so thank you!!!

It is scary to realize that you are very, very ill!! I know for me one thing my Acu doc was really nervous about - to the point she almost wouldn't treat me - was the state of my adrenals. That sent me on a search to learn all that I could about the adrenal glands! To then understand that mine were about to shut down really drove the point home about how ill I was -especially when I began to realize that I had a whole lot more wrong on top of that!

But, didn't we already know that we were really ill??? That's why we have fought long and hard in some cases (like mine and far too many other cases) to get the recognition that there really is something wrong!!

Hopefully by now you have the script for anxiety, and your Doxy will be coming soon! If you haven't yet started, please, please start with detoxing - the sooner you start getting those toxins moving the easier time you could have once you start killing off those bacteria. Just remember to start slow and don't try to push yourself to go too fast or push too hard to get through something.

Of course we are all here for you!!! Post what you need (support, info or whatever) and I know that we have such great members that you will get what you need!! Also don't forget that if you think I may be able to help, you (and anyone else) are always welcome to email me directly!! We "Lymies" have to stick together to help each other out!!

Of course you are very welcome!!! I would have never made it through much of anything with this set of infections had it not been for the members of this forum back then!! So i know what you mean!! As a matter of fact, it made such an impact on me, that I'm still here almost 5 years later!!! Hmmm, wonder what that says about me??? LOL!!

It might help to set your mind to your healing every time you think of how ill you are. I used to do the same things - I've had never been told that I was so ill that a doc was nervous about treating me before that - even though I'd been saying for a couple of years that I was that ill! LOL!! The other thing is that if your LLMD feels like you are bordering on getting worse, chances are pretty good that you would be the first one s/he'd tell!! Who else can make the changes that would keep you from getting worse???

Hmmm, I've sure been called a lot of things, but soothing is a first!!! Giggle!