I thought the brain fog was starting to go away and then yesterday, it settled back in again. I think I hate the brain fog symptom worse than any other. Not only is it an odd pressure type feeling in my head that I can’t describe, it’s also my stupid “pill”. I can’t get the right words out, I can’t concentrate and my depth perception seems off (which is especially scary when driving in lots of traffic).

I also think I’m typing one thing but when I go back to read it, I realize I typed something else. Or I spelled words completely wrong or used the wrong one (there instead of their). That may not seem like a big deal to most people but before all of this, I never had to proofread anything I wrote. I could be confident after I wrote an email, I could just hit send. Now? Not so much. I reread it slowly multiple times and each time I’ll see another screw up. It doesn’t help that our ( <– I actually typed “or” there – perfect example) email program at work doesn’t have spell check!

So today as I was sitting there, I just thought I can’t take this. I go back to my thyroid doctor next week but it takes FOREVER to get blood work results back from his office (3-4 weeks) and I just can’t imagine dealing with this for another 4-5 weeks if it could be a relatively easy fix. Probably not that lucky but a girl can dream, right?

I called my regular doctor and asked if I could come in to be tested for anemia since my OB/GYN mentioned it at my last appointment. They said they would be happy to test but I needed to be seen first. As luck would have it, the NP who leans more towards the alternative/holistic side is who had an opening. So I grabbed it.

My main symptoms right now are the brain fog (and all that comes with it), getting dizzy when I stand up, heart racing for no apparent reason and fatigue (though it’s been much worse in the past).

In all of my research, there are several things that continue to come up with those symptoms: (1) Celiac/gluten intolerance, (2) Hypothyroid, (3) Adrenal Fatigue, (4) Anemia and (5) Lyme (of course).

So I went over this with him and he patiently listened. In fact, it’s probably one of the longest appointments I’ve had with a “conventional” doctor outside of my thyroid doctor and I don’t really consider him to be conventional.

Let’s break it down….

Celiac/Gluten Intolerance

About 18 months ago, I saw this same NP about not being able to lose weight despite being on a low calorie diet and exercising five days a week. I had been doing this for 2 months at that point and had lost less than 2 lbs. After running a bunch of blood work that came back normal, he suggested cutting out wheat. I decided to just go low carb which essentially did the same thing (minus cross contamination) and the weight started to come off. I lost 60 pounds. With the Lyme diagnosis and prior, I altered my diet again and tried products with wheat – that’s when the intolerance symptoms started though I didn’t recognize them at first. I cut it out for the most part starting in December. But as I’ve better educated myself, I’ve been more diligent. I got super serious about gluten free this past spring as far as cross contamination, changing cooking utensils at home, checking supplements and toothpaste, etc. So I explained that my test for celiac had always shown negative because I wasn’t willing to gluten myself to get a positive diagnosis.

I asked if the celiac diagnosis would be of any benefit – is there any kind of treatment that I would receive that would be different versus a gluten intolerance? He said the main thing is the gluten free diet and with celiac, it’s a matter of trying to re-balance your gut, which is done by being strict with the diet, probiotics and monitoring nutrient levels. He said celiacs tend to have issues with B12, vitamin D and iron absorption. Um, check, check and maybe.

So good to know that there’s no real benefit to diagnosis and as long as I stay strict with the diet and continue my probiotics, I’m taken care of.

Hypothyroid

We know I have this already. The problem is trying to get me optimized on my meds. I explained to him that no matter how much Armour I take (1 pill or 4 pills), I feel no different. He said he didn’t think that was because of the thyroid but because other things were interfering with my thyroid being able to work as it should – either on or off medication. That theory works for me.

He also wanted to know who was treating my thyroid once I said I was on Armour. I told him and he seemed surprised but said he hadn’t talked to him much in the past few years since he moved out of the alternative medicine practice he was in and moved to this more conventional practice. He did say my heart rate could be due to thyroid as well.

Adrenal Fatigue

I told him I have been more tired since I came off of the Cortef but I really wanted to be able to take the saliva test with no medicine interfering with the results. He understood that but thought I probably still needed it and that could also be why I see no difference with thyroid meds. He asked me if my thyroid doctor does the saliva test, I said yes and he said to have him order that one for the best possible results along with DHEA-S and the other markers from that test.

Anemia

He thinks this is the most likely cause of my symptoms – particularly since I’m getting dizzy when I stand up and things typically coincide with my period. I told him my Ferritin level was 41 this time last year and he said wow, that’s low. Well, no one has said a word!! And it dropped into the 20s on my last test in March. He kind of nodded his head so I think that’s what he is leaning towards. If 41 is low, obviously in the 20s is worse!

Lyme

I’m actually okay with the symptoms being any of the above (minus the celiac as I have no idea how my diet could be stricter) but the one thing I don’t want it to be is Lyme. Though I’ll still take celiac over Lyme, I just may need to find a doctor who specializes in it if that’s the case.

Interestingly enough, today a report was released that the CDC has grossly misrepresented Lyme cases by saying there are 20,000 to 30,000 cases per year. In actuality, they admitted today it’s closer to 300,000 per year! Maybe next they’ll finally admit it’s not easy to diagnose and easy to cure! I won’t hold my breath.

Anyway, he said as you’re well aware there are many different opinions on Lyme, how to treat it and if it can be chronic. He said his own theory is that if you received proper treatment (with proper being up in the air as to what that is), then he believed lingering symptoms were due to the immune system attacking itself. I could buy that to a certain extent especially since everything I mentioned above is connected to the immune system (minus the anemia, possibly – depends on the cause). But there have been studies in animals and a group of about 160 people in the 1990s that show the actual germ still exists even after very aggressive treatment.

However, I gave up a long time ago with fighting with doctors about their beliefs on Lyme. I’m not going to change their mind and I don’t want another doctor to drop me so it is what it is. I just nod and move on. Now, if all these tests come back “normal”, then it will be a whole new ballgame if I feel like I need to pursue the world of Lyme again.

I planned to ask for another western blot but upon hearing his theories, I knew I was pushing it. And I really wanted all of this other blood work done so I let it drop. I’m pretty certain I can get my thyroid doctor to do it if all of these other results show normal.

So that’s where I am. He is doing CBC, metabolic panel, all thyroid levels (including FT3 and FT4 – no conventional doc usually does those!), blood cortisol, vitamin D, B12, kidney and liver function, all of the iron panels including ferritin, electrolyte levels and a few other things.

He drew blood and said the results should be back within a few days. Luckily, they have a patient portal so I can see them when they come in. Only exception being if something is really out of whack because they typically won’t post them until someone has called to explain.

More waiting….but hopefully in a few days I will get some answers. Good thing is I’m going to start cross fit again. I had stopped in the event that it was somehow contributing but that’s made zero difference. So I’m going back to it. I at least feel stronger when I do it and that can’t be a bad thing, right?

I’ll post when the results come back. Keep your fingers crossed it’s a simpler thing to attack and NOT Lyme!

Well, I didn’t have any kind of herx reaction on the Zithromax but I did start to feel better so I think I just had a sinus infection.

Last week, my period started and was back to normal. Started on day 25 and the flow was like it was before I had Lyme (sorry for the TMI). On the day I started, my head felt a little off but nothing too bad.

It’s been off and on in the past week but starting on Sunday, it has pretty much stuck around. My husband and I have been going back through everything trying to figure out what it could possibly be as far as gluten or dairy. We bought new pans and utensils for the kitchen. We quit using anything plastic when preparing or storing any food for me unless it was brand new and therefore designated gluten free. I even replaced my protein shaker bottle.

Sitting at work today, it hit hard again and it was just after breakfast. I knew I hadn’t had gluten or dairy. So I started going back through every thing I’ve put in my body. I had rechecked my medicines, magnesium, biotin and vitamin D and all were free of gluten and dairy. My multi (that I’m not great at remembering) is also gluten and dairy free.

The only thing that leaves is my probiotic. I started a different one just after starting the antibiotic. So it’s been about 12 days on it and I’ve missed a few in there. I started doing Google searches and guess what I found? Reports of people having issues if they have a dairy intolerance. Some bottles say does not contain milk, some say doesn’t contain lactose, some say doesn’t contain casein (never all of those together). Why is the labeling different on different bottles? And these are all at places selling it right now!

Are dairy free and does not contain milk the same thing? I have absolutely no idea. But I switched to a probiotic today that specifically says gluten free and dairy free. It’s actually the same one I took before this one.

I’m praying this is the answer and this brain fog is not actually from the Lyme coming back to the surface. Please, please, please don’t let it be the Lyme.

In other news, I also started Crossfit about a week and a half ago. It’s kicking my butt but in a very good way. The workouts are quick and it’s something different each day so it’s difficult to get bored. I’m doing an incredibly modified version of it since I haven’t exercised in forever but I’m hopeful I’ll gain my strength back again.

And also hopeful this brain fog goes away and stays that way. My stomach has also been a mess the past few days so that is also giving me hope that it’s either the probiotic or something I ate instead of Lyme. I just hope I’m right!

Saturday before last (20th), I started feeling bad. Nothing terrible – just didn’t feel good and felt like I was starting with a sore throat. On Sunday, I woke up with a definite sore throat and had been waking up in the night with the feeling like I had sand in the back of my throat (hate that feeling!).

On Monday, I went to my doctor because I was going out of town for work at the end of the week and I didn’t want to have a sinus infection for a plane ride! So at this point, it was just sore throat, feeling like I had “gunk” in the back of my throat, beginning to lose my voice and my neck had been hurting (which I continually attributed to sleeping on it wrong). No fever.

They swabbed me for strep – negative. She looked at my throat and said it looked perfectly fine. So I’m like great, then why do I feel like this? She gave me a Z-pack and sent me on my way.

I got the prescription filled and then started thinking about how much I really didn’t want to take another antibiotic! Plus, if I’m being honest, it freaks me out a bit. This is how I felt when the Lyme really started kicking up – like I had a cold all of the time and I was exhausted. And Zithromax is one of the medications my Lyme doctor uses sometimes instead of Doxycycline.

I decided not to take the medication and just hold out to see if my immune system would handle it. I convinced myself it was allergies and started taking Zyrtec. The sand in the throat feeling continued a few more nights. And then this past weekend, I started coughing – not a lot and kind of random. Today, I haven’t been able to stop coughing and my head feels clogged. And my voice is nice and raspy!!

So I just gave in and took the stupid medication. I held out 9 days – you would think if my immune system was going to kick in and help me out, it would have done it by now.

Please, please, please don’t let me herx on this. Let the Lyme really be gone and for this to JUST be a sinus infection.

I made it 25 days without any antibiotics. Maybe after this five day course, it will be a long time before I have to take another one!!

So it’s now been a full week since I ended all of my antibiotics. Right now, I’m just continuing with my thryoid and adrenal meds, probiotics and magnesium. Every other day, I take biotin and vitamin D and when I remember, I take my multi. I have to admit, it has been great to not have to choke down 20-30 pills a day! I may end up adding back some of the supplements at some point but for right now, I’m happy where I’m at.

Another thing that happened this week is we think we may have discovered another food allergy. I’ve read a lot about cross reactions with gluten where your body recognizes other things as gluten as well and you react in the same way. Well, we went to eat Mexican over the weekend (I had my usual safe food of bean dip with chips fried in a separate fryer) and within just a few minutes, my stomach was cramping and I had intense nausea (to the point of finally giving up and taking Zofran several hours after it started). I didn’t think much of it then – just figured maybe my body was still adjusting to being off of antibiotics.

On Sunday night, we made a gluten free pizza. I ate one piece and within about ten minutes, here comes the nausea again. So we started trying to find the correlation between the two and the only thing that was the same was the cheese! With that, it essentially ends any eating out for me as well as many of the “convenience” type foods I was eating like pizza. Probably not such a bad thing. 😉 I’m going to cut it out for a bit and see what happens.

Right now, it doesn’t seem to be all dairy as my husband has been cooking vegetables with butter and there hasn’t been an issue with it. But I haven’t tried any other dairy products. I may attempt that this weekend – we’ll see!

I literally knock on wood every time before I say this, but I’ve been feeling good the past two days. I had some brain fog issues on Tuesday but I just tried not to focus on it too much and that night, I came home and was in bed by 8:00p and asleep shortly after. I slept until the alarm went off at 6:45a the next morning. It made such a difference in how I felt the next day, I’m going to continue trying to do that.

While my head was all foggy, I was looking up cures for brain fog – not really expecting to find anything but just to see what was being talked about in regards to it. It helped me to see that what I describe as brain fog is what others describe too – so I’m at least using the right term when I tell doctors that. The interesting part is that many articles also referenced different causes of brain fog including thyroid, adrenal fatigue and gluten intolerance. Um, check, check and check!

Many of my Lyme symptoms disappeared a long time ago. The symptoms I’ve not been able to kick have been the brain fog and the fatigue. With the fatigue, I think it will just take time because my body has been through so much. But what if the brain fog issue is really from my thyroid not being optimized or from the adrenal fatigue or from the gluten intolerance and cross reaction to other foods as well? What if it’s not from the Lyme at all and I’ve actually been done with all of the Lyme symptoms for a while? I still think about when my head was the clearest it has ever been since all this started and that was when I was in the hospital for my gallbladder and given stress doses of Cortisol for my adrenals. I think it’s too early for me to attempt to answer that one, and maybe I’ll never be able to but it’s interesting nonetheless. Yet another theory of mine – as if I need any more! haha

Also, my period started today. In the past, the few days leading up to my period and the actual week of my period have been pure hell. But other than the brain fog on Tuesday, I’ve been okay. It scares me to even admit it because I’m terrified it will be taken away from me again. But I have to remember to stay positive with this. I keep reminding myself that I didn’t herx at all with the Doxy or Rocephin this time and the herxes I thought I was having with the herbals were likely allergic reactions!

So far, so good. I hope this continues. I’ve been praying for a strong immune system and a healthy body. I hope my prayers will be answered!

Now off to bed to make sure I get plenty of rest again tonight!