The NP called me this morning and said all of my blood work was normal except for my thyroid. She only measured TSH but my doctor who manages that will never adjust my medications just based on that number. She wants me to drop my dosage but I told her I would talk to him about it.

So normal labs – my WBC was even on the low end. The good news is liver and kidney enzymes still look good, although a little higher than last time they were checked. That’s one thing that’s been consistent – with the exception of TSH, my labs have always been perfectly in range.

So she said that only leaves one option for all of this – the herbal medications. Maybe the fever was some kind of viral thing since it was basically just a day long thing. But the rash is something different. Of course, it could be part of a herx and that’s the tricky part. What’s a herx and what’s an allergic reaction?

Last night, my head felt very strange. But not brain fog or even typical Lyme brain as I call it. It was more the feeling that I was about to pass out. My husband ran downstairs to get me a protein shake and protein bar so I ate that at 10:30 last night. Then I got in the tub. When I got in, I noticed the rash – it was spreading.

Yesterday morning, it had spread a little further on my upper legs, was on my butt! (sorry, TMI) and very faint and sparse on both arms. Well, now it’s going down my calf on my left leg and spreading upwards towards my stomach! So something has got to give because I don’t want this stuff on my FACE!

And then my tongue started feeling tingly. Now, full disclosure, I was beginning to freak out with the rash spreading so quickly. So that could have been all in my head. Just to be safe, I took Benadryl again before I went to bed. Otherwise, I don’t think I would have ever been able to fall asleep.

I told her when she called I would stop the herbal meds and see what happens. Truth be told, I’m terrified of what this is going to mean. Will I spiral backwards? Will all my symptoms come back full force? Time will tell.

IF this makes the rash go away, then I’ll reintroduce the herbal meds one at a time to see if I can determine which one was causing it. If it doesn’t go away, then I suppose I’ll start eliminating supplements. That will take forever though to figure out which one because I take so many! I just hope it’s something as simple as an allergy and not really something else. Something tells me that’s not the case but I don’t know.

As of now, I’m just really scared of what the future may hold with this. Fingers crossed that as my system gets rid of all of these medications and toxins, I will start to feel better. Maybe my treatment can really end.

We’ll see….

Yesterday was HORRIBLE. On Saturday, we went out and did a few things like driving 60 miles to get chocolate bars for me that are sweetened with stevia. One bright spot! I started feeling a little run down by the end of the day but nothing more than normal, or “Lyme normal” anyway.

But Sunday, I woke up feeling really bad. I was sweating (which is weird) so I took my temp and it was 99.7. Very strange for me. Ever since all of this started, I’ve struggled to get my temp to 98! I took some ibuprofen and then just laid around. By the afternoon, the temp was 101.9, my entire body was achy like I had the flu and I just plain felt bad. So I literally laid in bed all day long and just drank a ton of water. I took an epsom salt bath to see if it would help but no luck there.

Sunday morning, I dropped my dose back to 15 drops each. And Sunday night, I only did 10 drops. I figured I either had an infection (or something viral) or this was a major herx. It seemed odd to me that it could be a herx because I had no brain fog (which is generally an intense symptom). It was much more like having the flu – not like the herxes I’ve had in the past.

The other thing that is weird is a rash on my legs. This thing has been there for several weeks but it kind of comes and goes. One day it will be really dark, the next day, kind of light where I can’t really see it. It’s a flat rash that just looks like someone put little dots on my legs with a dark red marker. It doesn’t itch and outside of seeing it, I wouldn’t have any idea it was there. Until Sunday, it had been in a pretty small area – maybe 3 inches by 3 inches. When the fever hit, the rash expanded further on my legs. Weird. I’ve searched everywhere online for causes and can’t really find anything other than blood infections. I can’t find anything Lyme related that looks like this rash. So I’ve been wondering if it’s due to the herbal medications…

So Monday morning, I called my internal medicine doctor’s office and they got me in with the NP at 10:30. When they took my vitals, my blood pressure was high for me (not by normal BP measures) and my heart rate was in the 140s. But no temp – it was 98.5. Go figure, right?

She comes in and says it could be the new med she put me on (which I haven’t talked about) but I told her the rash was there prior to starting it and that wouldn’t explain a fever. Then she said maybe it was my thyroid levels being off which could explain the heart rate but not the fever or the rash. So then we thought maybe it was multiple issues that just SEEMED like it was one rolled together. My son had the same high temp on Saturday afternoon that disappeared by Sunday morning. The only difference was he acted totally normal with it (which is actually a big relief to me!).

I told her I had issues with tachycardia in the past but no one has figured out why. And I just had a full cardiac workup a few months ago and the cardiologist said everything was fine – and that was with a fast heart rate AND an abnormal rhythm.

She decided to run labs and while I was sitting there waiting for my labs to be drawn, she came back in and said she wanted to do an EKG before I left. Then she made sure to tell me how to call the on call doctor after hours. She was kind of freaking me out! So I went back to the room and they did the EKG. A few minutes later, she appeared and said it just showed a fast heart rate but no abnormal rhythms so she felt better about it.

So far, the fever hasn’t returned. I don’t feel great but I feel better than I did yesterday. She said we were going to rely heavily on the labs so now it’s just a waiting game for those to come back from the lab.

Just two days ago, I wrote about how I had two days of no symptoms. Yesterday though, it was like “Hi, remember me? I’m here to kick your butt again!” I felt horrible all day. My head was completely messed up and I just felt like I wanted to curl up in bed and stay there. Today was my scheduled day to work at home. So it was good to be able to rest and just use my laptop to work from my bed.

But what I really want to talk about today is just the lack of understanding and compassion about this disease. First, Lyme disease is chronic unless you are treated within 3-4 weeks of the tick bite. There is no cure outside of that time frame. Did you read that? NO CURE. Because of the medical community’s blindness and ignorance towards Lyme disease, treatment within 3-4 weeks didn’t happen for me. So it’s highly probable that I will be dealing with this for the rest of my life.

This is the definition of “chronic”:

A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects. The term chronic is usually applied when the course of the disease lasts for more than three months.

I’m in month 7 of my treatment and I’m getting very close to the one year mark since my symptoms began. It’s chronic. Hopefully, I will have long periods of remission where I generally feel like my old self. But I’m not there yet.

Hopefully, many of the symptoms I’m still having will resolve and are not the result of permanent damage that has been done, but only time will tell.

Hopefully, the people around me will finally actually listen as I try to explain this and stop asking me why I’m not better yet (with an insinuation that it’s somehow my fault or they don’t believe I’m sick at all).

Hopefully, people will recognize that it’s not really possible for me to put into words how I feel on the inside and I have absolutely no explanation for why I look “normal” on the outside. I know I don’t look sick – but that doesn’t mean I’m not.

I struggle with keeping much of what this disease is doing to me out of the limelight (like that play on words?!). I do my best to hide it from coworkers, my boss and friends. For one, I don’t want others to know just how jacked up my head is on some days due to neurological symptoms (um, what did you say your name was again even though I’ve known you for years?). Two, I feel like people are so sick of hearing about me being sick. And maybe I don’t blame them. But I also hope they, especially some of my “friends”, never feel as alone and isolated as I’ve felt over the past year in my struggle to deal with this.

Hopefully, people will take the time to actually do a little research into what Lyme disease is and how it’s affected people’s lives before giving me asinine advice like “stop all these drugs and let your immune system handle it”. If my immune system was doing what it was suppose to, I would have never gotten sick! My immune system doesn’t work because of what Lyme does to it. Would you tell a cancer patient to just stop chemo and see what happens? Would you tell a dialysis patient to just give it up and go to the house? Of course you wouldn’t. And their doctors wouldn’t tell them that either.

But that’s where Lyme is different. Because people do tell me that. And the doctor told me that too. Just stop taking everything and let your body do its thing. My body doing “its thing” with this infection in it consists of mixing up words, not being able to speak in coherent sentences, not remembering from one word to the next what I was talking about, not remembering important events from my past (or conversations from 30 minutes ago), an unsettled, dizzy feeling in my head for hours on end, out of body type experiences, drenching night sweats, panic attacks, joint pain in my knees to the point of limping, heart palpitations, intolerance to cold one minute and heat the next, light sensitivity, sound sensitivity, so many food sensitivities that it’s easier to tell you what I can have than what I can’t, Bell’s Palsy where half of your face droops, tingling and burning sensations in my arms, stiff neck, visual disturbances, feet that feel like I have been standing on rocks for hours on end, and a fatigue that can’t even be explained and is not relieved by any amount of sleep or rest.

But yes, let’s just stop all of my treatment and let all of these symptoms take over. After all, that sounds like a great life to be able to live. I mean who wouldn’t want to be like this day in and day out? The next time you feel inclined to tell me that, why don’t you trade places with me for one day? How about you take on just the neurological symptoms alone and tell me how you feel about just stopping my treatment then?

I want to be well again. I want to be able to do things with my husband and our son without worrying about whether I have the stamina to do them. I want to be able to take him to the zoo, not have guilt because I know there’s no possible way I can walk that much in one day without a rush of symptoms. I want to have interest in things again, to be able to feel emotion and to be able to express myself in written or verbal form. I don’t want to be intimidated in meetings because I never know when I open my mouth to speak if my brain is going to fail me.

I want to be able to eat normal foods like a normal person instead of asking for an allergen menu and begging them to avoid cross contamination of my food. I want to be able to have a single slice of cake on my birthday. I want to be able to go to the grocery store without spending all of my time reading labels looking for hidden gluten or sugar and over and over again, replacing the product back on the shelf and walking away. I want to have something to drink besides water.

I want to be able to do things with the money we work so hard for other than pay for doctors who don’t take insurance, more supplements than I can count and herbal medications that I have no idea if they actually work. I want to be able to go on vacation without calculating in the back of my head how many doctor’s appointments it would equate to if we didn’t go. I want to wake up in the morning without dread because I know I have to swallow more than 20 pills.

I want to come home in the afternoons and not have to fight the urge to go straight to bed. I want to be able to have the energy to play with my son. I want to be able to be excited when he’s standing beside my bed in the morning saying “Mommy, wake up, the sun is up!” I want to be happy the sun is up too.

And one day all of this will happen. One day I will be in remission. One day I will be me again. But until that day comes, I just ask for your support. Educate yourself about this disease and if you’re not willing to do that, then kindly keep your comments to yourself. I’m fighting every day to recapture the person I used to be before this bacteria took over and I don’t need to be fighting your ignorance and condescension as well.

Yep, two whole days over the weekend without any symptoms other than being tired. But it wasn’t necessarily exhausted tired like I don’t want to move – just didn’t have a lot of energy.

But NO brain fog, no forgetfulness, no slurring, no mixing up words….WOOHOO!

Today has been a pretty good day as well. I’ve felt all day like my head was trying to start but it never really happened.

I’ll get my B12 shot tonight, so hopefully that will help as well.

I also had a massage on Saturday. I’m still a little sore from it but it was really nice. Well, it was nice right up until the end when she tried to sell me a bunch of herbal remedies. I hate those sales pitches. I told her I was already taking too much stuff and had no idea what would interfere and what wouldn’t. She said the ones she was recommending didn’t interfere with anything and I could take them as needed. So what are they – water?! Needless to say, I passed on all of that. I’m spending plenty on supplements recommended by a doctor – I don’t think I need any recommended by a masseuse!

My next massage is on the 17th. And then a few days after that it will be time for the monthly flare-up. I’m really curious to see how that is going to work out this month with switching to the herbal medications! Maybe it won’t be too bad.

All in all, it’s been a nice couple of days. We were even able to get out of the house to go to a museum and I was able to walk around for several hours and climb stairs without issue.

It’s progress and I’ll take it!

At one point, I was up to taking 24 pills a day. And I hate swallowing pills….to the point it sometimes makes me gag. I spend a lot of time in the vitamin shop rattling bottles trying to determine how big the pills may be.

When I was putting all of my medications and supplements into my medicine dividers, I realized the 7-keto runs out tomorrow and the ALA runs out on Saturday. Normally I wouldn’t drop two things at once but I hate to buy another bottle just to avoid that. And I think the only thing the 7-keto has accomplished is making my skin break out and increasing my cup size (not a welcome change!).

And actually I’m possibly dropping three things. When I was taking the Doxy, I had to space it apart from calcium. Because of that I always took my multi at lunch. The Ginseng and my multi look practically identical and the only way I can tell them apart is when they’re in my mouth (the multi is a raw vitamin and tastes horrible!). So I also took it at lunch. Well, yesterday it dawned on me that my brain fog always settles in about an hour after lunch. It doesn’t happen all of the time so it may be completely unrelated to my supplements but you just never know.

So this morning, I decided to take everything with breakfast since I no longer take the Doxy. I take the herbals as soon as I get out of bed so it’s generally about two hours later by the time I eat so I don’t have to worry about interactions.

And what do you know? The brain fog started about 45 minutes after I took everything. I rarely have it start in the morning!

Tomorrow I’m going to skip the ginseng and see if it makes a difference. Maybe it won’t and it’s just a fluke but there’s only one way to find out.

6/6: Last dose of Ginseng (started 2nd week of April)

6/7: Last dose of 7-Keto (took it 60 days)

6/8: Last dose of ALA (have been on it since late 2012)

Tomorrow, I will also increase my dosage of the herbals to eight drops.The only exaggeration of symptoms I’ve had is the fatigue and brain fog. And to be fair, the fatigue started with my last flare up (around the 25th of May) and never went away again.

I also booked myself a massage on Saturday and will finally be using my gift certificate from Christmas. I hope it helps! And then starting on the 17th, I will go weekly for six weeks. I figure with each supplement I drop, I can add another massage for the same cost! haha

Will post back soon with the results of my little experiment!

Today has been a little rough. First, I felt like my alarm clock went off this morning when it was actually still the middle of the night. So I will be going to bed early tonight!!

This afternoon, I felt that all too familiar and very unwelcome feeling creeping into my head. It’s so hard to explain – it’s pressure without pain, an unsettled feeling without necessarily being dizzy and a full feeling without congestion. But most of all, it’s like you just took a stupid pill.

Of course, at work today I had a lot of analytical type work and proofreading to do. I swear I read this one sentence in an article 15 times and I could not decide if it was grammatically correct. To show you just how stupid this crap makes me when it hits, I was struggling over whether I should be using “is”  or “are”. I finally gave up and asked someone else to read it and tell me. I hate doing that because then I look like an idiot and no one really understands what Lyme does to my brain but I had a deadline so I just sucked it up.

Then I could not for the life of me remember the name of a person who works with me. I was trying to get her attention and that’s a little difficult when you can’t recall the person’s name! And this is a name I should know – I interact with her daily. I finally was able to get her attention but I didn’t remember her name until I was in the car on my way home. All I knew was the letter it started it with and for the first few minutes when I was trying to remember it, I couldn’t even think of that.

I hope this passes quickly. But I’m not sure what to expect with this especially with adding another drop every other day. I may be on a much slower schedule of increasing the dosage if this is what I have to deal with every day with it.

I can’t wait to work from home this week so I don’t have to worry about looking like an idiot in front of everyone!

The Banderol and Samento arrived on Friday (my birthday gift! haha) and I started both of them Saturday morning.

My dosing schedule is 5 drops of each in the AM and 5 drops of each in the PM. I have to take them 15 minutes apart on an empty stomach either 30 minutes before any other food, medication or supplements or two hours after. That’s no easy task to get them spaced correctly, especially since I have other supplements and medications that have to be taken on an empty stomach and also have to be spaced apart from each other! I mix the drops in a few ounces of water and let it sit for a minute and then gulp it down.

It definitely has a taste to it but I’m not quite sure how I would describe it. Not horribly bad but it certainly doesn’t taste good either. The taste of the Samento is much stronger than the Banderol. I’m hoping I will get used to it as time goes on because I have to add one drop to each dose every other day until I’m at 20 drops. So I’m sure at 20 drops, the taste will be quite strong if I’m not used to it yet. But I have two supplements I take that tasted horrible when I first started taking them and I don’t really notice it now. Hopefully this will be the same way.

The first day I took them, I felt about the same. The exhaustion is still hanging around and I was definitely more tired but nothing I can’t handle. Today, I took a nap in the middle of the day, which if you remember, I rarely do. The last time I did that was when I was accidentally exposed to gluten. And before that, I couldn’t tell you when the last time was. I had several episodes of the foggy feeling that were fairly quick but much more intense than I’ve had in the past. That didn’t happen until this afternoon for the first time, so after my third dose. But none of the other neurological symptoms with memory, word recall, etc.

So I’m just going to have to see how this goes as far as increasing the dosage. If I have a major herx with it, I either have to back down or just maintain at that level until I feel better. Hopefully, I’ll be able to ramp up to the 20 drops 2x a day on schedule.

And just so I can keep up with it, the schedule should be:

6/1 & 6/2: 5 drops
6/3 & 6/4: 6 drops
6/5 & 6/6: 7 drops
6/7 & 6/8: 8 drops
6/9 & 6/10: 9 drops
6/11 & 6/12: 10 drops
6/13 & 6/14: 11 drops
6/15 & 6/16: 12 drops
6/17 & 6/18: 13 drops
6/19 & 6/20: 14 drops
6/21 & 6/22: 15 drops
6/23 & 6/24: 16 drops
6/25 & 6/26: 17 drops
6/27 & 6/28: 18 drops
6/29 & 6/30: 19 drops
7/1 & 7/2: 20 drops

So, as you can see, it’s going to take a little more than a month to work up to the full dose. Typically, it will take me two bottles of each to make it through the month but with this ramping up dosage, one bottle will last me through the 27th. Technically, I can go up to 30 drops if I’m not seeing enough of a difference but I’m hoping that won’t be the case. If all else fails, I can add the Doxy back in after the summer for the rest of the refills I have left.

And hopefully, I will have a back-up plan in place by then for someone to treat me going forward if I need it. Fingers crossed that I can get into remission on my own though and these herbals are going to mop up what is left after all the Doxy and Rocephin I’ve been on!

We went out of town for the holiday weekend. I was really nervous about going because it was going to coincide with my period, which also meant it would coincide with a flare. My last monthly flare was one of the worst I’ve had so I really didn’t want to be out of town for this one.

But I was still holding out hope that maybe it wouldn’t be so bad. Last month when it happened, a lot had changed in the few weeks prior with medication changes, PICC being pulled, gallbladder surgery, etc. I was hoping maybe it was due to my body adjusting to so much rather than it just being Lyme related.

The good news was that my period is back on target – 27 day cycle. So that was nice, especially since last month it was only 21 days. And I’m happy to report that I really didn’t have much in the way of symptoms. I was mainly exhausted from minimal exertion (walking to the park).

On Saturday, I did start to experience some tingling and burning sensations in my lower arms (below the elbow) and hands. It kind of felt like when your arms goes to sleep and starts to “wake up” again. I looked it up and it’s called peripheral neuropathy and of course it’s a symptom of Lyme – what’s not?! Whatever. At least I didn’t get the brain fog again hard core.

I had a few quick episodes, like just a few minutes long….and that I can handle no problem! It’s when it sets in for hours on end when it gets the best of me. I also did fairly well remembering things (we saw a lot of people we haven’t seen in a while) and finding my way around a city I haven’t been in for quite some time. Overall, minus the tingling and exhaustion, it was pretty mild.

While I’d love to have my energy back, I’ll take the exhaustion (at least the level I have now) over the brain fog and neurological symptoms any day of the week! So hopefully this is the sign of good things to come.

I also ordered the Banderol and Samento and it should be here by the 31st. So I plan to start taking it on the 1st.

After getting dumped by my infectious disease doctor, I started searching for another doctor. In that search, I ran across several in other Lyme groups who had been treated exactly the same by my doctor – she just dropped them out of the blue. They did give me a recommendation of someone who will stick by you for the long haul in another state. I looked her up and she is $425 per appointment. She doesn’t take any insurance. The treatment and labs may or may not be covered depending on how my insurance decides to view it since she’s not a covered physician.

So I decided to do another webinar and tell him my story to get his opinion. I decided I would go with whatever he said at least in the interim until I can find someone else. First, he did say that he agreed that my treatment should not have been stopped. I should have continued to be treated until my symptoms had been gone for at least two months or no improvement after several months of differing kinds of treatment.

He recommended that I try the herbal medications, Banderol and Samento, until I can find another doctor. He gave me the dosing schedule and said I can continue to add the Doxy to it if I would like. I think I am going to go the herbal route but not sure about continuing the Doxy too. It would be nice to not have to worry about the sun sensitivity from the Doxy during the summer months.

With the herbals, they go after the cyst form as well (the one my doctor didn’t think existed). So I guess we will find out how right or wrong she was when I start this based on how I react. If there is a cyst form that this penetrates then I could expect to have a pretty decent herx (I would assume). I have read accounts from some who had an increase in symptoms after the first dose.

In the meantime, I’m going to continue to look for other alternatives. I also spoke to someone who was seeing the doctor who diagnosed me and was not impressed with her knowledge or treatment of Lyme. So I’m very thankful she was able to find out what was wrong but it looks like I made the right decision for treatment by not continuing with her. She said that she felt like it was all about the money and she continually did things like “I think I’m going to start you on this but not until the next appointment” and she felt like she was just delaying it for another appointment fee.

Several different people emailed me about the one that charges $425 and they all really liked her. Plus she had/has Lyme as well so she understands all that surrounds it. But I figured I can do the herbal protocol for about four months for the price of one appointment with her. So I’m going to try it first.

I’m still really disappointed in my ID doctor, but it is what it is. And being upset about it isn’t going to change what she did. So I just need to figure out what the next steps are going to be and keep moving forward.