It's so important to know this! More than 10 years ago I was diagnosed with chronic fatigue syndrome and fibromyalgia. At that time, it felt like I had arthritis and I had all of the symptoms of multiple sclerosis. Do your research and find people, like me, who can point you in the right direction.
0 Comments
I love Dr. Richard Horowitz. He has treated countless Lyme patients with great success. He's in Hyde Park, New York. The video shows his book at the end. It's one of the first Lyme books I ever bought and has a ton of information in it. There are a lot of parts of it that will go right over your head. You can tell it was written by a doctor because it's very technical. He does a good job explaining it, though. He has written a new book that I pre-ordered that is written more for the layperson. It'll be out by the end of the year. This week marks one year since I started treatment. It hasn't been easy. Just this past week my Lyme team made a major adjustment to my IV protocol and switched up some of my pills, too. Although, this month, my thyroid panels are all within normal limits, my blood sugar has been jumping around. It's usually in the hypoglycemic range, but there have been a few times it's been too high. Also, my blood pressure has been low. Yesterday, it was 98/68. I always had low blood pressure until the day I delivered our daughter. It was 100/60. It has been high ever since. A couple of years ago I gave up and let them put me on a low-dose calcium channel blocker to help regulate it. For years I've insisted that I do not have high blood pressure. It appears that is the case. Something has reversed. Here's something else that has reversed. For well over a decade I've had high cholesterol...over 220 at times. I also insisted that I didn't really have high cholesterol. I had it checked in October or November and it was below 180. It hasn't been that low in YEARS. I mentioned that to my Lyme team and they were quite intrigued. It seems that they've had patients whose cholesterol levels were over 300. While they were in treatment what happened? Their cholesterol levels fell. Apparently, there is some way the bacteria can manufacture cholesterol for their own use. How interesting is that?! You know what else is interesting? Take a look at the meds I've taken over the past year. This, of course, does not include the almost 60 injections of methylated B12 I gave myself or all of the IV meds I've had. That would probably fill a house. Keep in mind, though, that a lot of these are natural supplements because my Vitamin D was REALLY low, one was for liver support to counteract any effects of the meds, one supplement is for the MTHFR gene mutation that I have. Fifty percent of the population has that gene mutation. How many of you know if you do or don't? Of course, you can't forget the copious amounts of probiotics I've been on since the beginning. Most probiotics you find have 1 billion units of bacteria per pill unless you buy from a vitamin shop. My treatment protocol has me taking around 100 billion units every day. So, no...not all of these bottles are antibiotics and antifungals. I chose to go the integrative route which includes both conventional and holistic meds. So, the burning question everyone has is..."Are you feeling any better?" Chances are, when I am, I'll be shouting it from the rooftops. I'm not shouting yet and I can barely climb the stairs, much less get to the roof. Again, you have to understand that this treatment makes you worse before you get better. You start to get better and they change the meds because the bacteria are smart and hide once they figure out the med cycle and types of meds. Then...they change your meds to hit another co-infection and it makes you worse before you start to get better. This is a long, long road. I've had this for 33 years, which is much longer than most people.
You can ask me anything, but if I haven't said I'm feeling better, or that I'm backing off of the meds, or getting the PICC line removed...nothing has changed. It all goes right here so I only have to say it once. Fatigue and exhaustion are the hardest things I deal with other than brain fog and confusion. It takes anywhere from several days to a couple of weeks to do blog post because it's extremely hard for me to concentrate. So, please don't get upset if you ask me something and I direct you here because this is where you're going to find everything. On Sunday after church we made the trip to DC for my appointment. We went up a day early so our daughter could spend some time with her best friend. As an added bonus, the Japanese cherry blossoms were in the middle of their peak. My husband and I went down to the Tidal Basin for a little while. I was the only person in short sleeves and I thought it felt great. Even my husband had a jacket on. My thyroid has gone completely crazy. I'll talk about that in another post as well as my Epstein Barr virus numbers because this one will be long enough. The visit to the Tidal Basin was slow and short, but absolutely perfect. We parked behind the George Mason memorial and walked...ever so slowly...down to the water. We sat on a bench for awhile and then walked up to the FDR memorial. The times we've been down there before we've almost circled all the way around. Two days earlier I'm not sure I would have even made the drive much less have been able to walk. Of course, today, after the trip home yesterday, I woke up feeling like I'd been hit by a truck and then stomped on by a 326-pound Sumo wrestler with a grudge. Yesterday, I went in for my 2-hour appointment and left with some big changes in my treatment protocol. This is the first big change for my IV protocol since I started at the beginning of August. About 3 weeks ago I had two weeks that were pretty good. By "pretty good" I mean I got a little more done than usual. I don't mean I was functioning anywhere near 100%. It was more like 60%, but I'll take what I can get. Beggars can't be choosers! It appears that the Bartonella infection is very angry. A lot of times, when treatment is focused on other infections, the ones not being treated tend to come out. Here's what I'll be doing until they change it up again which, at the rate I was going before I saw a change, will be 6-7 months. Finish Merrem, Diflucan you currently have on hand then will discontinue. (Both of these are the IV meds I've been on since the beginning along with Clindamycin.) Following week add in Mycamine IV (replaces the IV Diflucan) Continue Nystatin (I've been on this since May. I take 2 million units per day. Yes...2 million is correct.) Will add in IC Azithromycin (replaces Merrem) will do daily for 7 days then reduce to Monday-Friday. (I've been taking Azithromycin 600mg orally since May along with Mepron in a cycle of 21 days on, 7 days off. The 7 days off I took Tindamax.) Will finish current cycle of Mepron and then discontinue it for now. (I've also been on that since May. It's what I call "Liquid Gold" because it can cost up to $1,300 for 40 doses. I was taking 2 tsps. per day, so that's 20 days, BUT...it's so thick, like tempera paint, that you can't get a full 20 days out of it. Not to mention, it tastes absolutely foul.) Will continue Clindamycin but reduce to Monday, Wednesday, Friday. (I've been infusing this twice a day Monday-Friday since August.) Tindamax you can discontinue unless you get a new tick bite. New tick bite take 2 pils all at oce then twice per day until you contact the office. (I don't even want to think about a new tick bite. It makes me sick.) Once you have been on the IV Azithromycin for a week will add in Myobutin oral one at bedtime. Will stop Minocycline when you add Mycobutin. (I've been on that since April. It is a ~cycline drug like Doxycycline which is what it commonly used for Lyme. My Lyme team finds there are better results with this one.) They also added Ivermectin which is a topical med for some weird bumps I've had come up. There are 3 linear scars on my chest near my PICC line which they found intriguing. They think it's some of the bacteria working its way out. I've had these before. They hang around forever and never heal. Also, I'll be taking Valtrex to increase my viral load. If my mannose-binding lectin drops below 500, they're going to start me on IVIG which is an intravenous immunoglobulin treatment. So...I can expect some big changes. What are they going to be? I don't know. I could get very sick again and not be able to do anything for weeks at a time. I may be fine. There could be any number of things that could happen. I'm not going to know if or what they are until I start the new meds. Each one is started a week apart. That way, if I have a reaction or anything strange going on, we can relate it to that med and which infection the mechanism of that med is targeting. They want me to get a live blood smear done. What luck that there's a lady here who does those?! People drive from DC here to get it done. That's a plus for me. She'll spend 2-3 hours with me looking at my blood under a microscope and have it on a TV screen so I can see it. She'll video it, so I'll have a copy of it that I'll probably post here. I wish I would have known about it before I was almost a year into treatment. Anyway, as Deepak Chopra says, I know the chaos is coming, but great changes will follow it. I just have to hold on. Who knows? The changes may have a very positive effect and no adverse ones.
On Friday I went to the endocrinologist for my follow-up appointment. He broke down his suspected diagnosis of subacute thyroiditis a little bit more. Several times I've said that it feels like I'm flip-flopping between hypo- and hyperthyroidism. His official diagnosis is "self-limiting transient hyper/hypothyroidism. Do you know what that means? It means I'm flip-flopping between hypo- and hyperthyroidism. Huh. Funny how that works. It's like my body tells me what's going on before it even shows up in the blood work. I've said for over a year that something is wrong with my thyroid LONG before anything ever showed in the lab results. I'm very in tune with what's going on inside of my body.
Along with his diagnosis I was given three options in this order... 1. Ablation 2. Meds 3. Nothing Lyme is all about living through the crazy cycles it throws your body into. So, what was my choice? Obviously...wait it out. I've known what's been going on. A thyroid ablation would be too stressful for my body, plus I would have to be on Synthroid for the rest of my life because we just killed my thyroid. You can't go back once you go that route. The meds would have been a beta-blocker and low-dose steroid. That's a "no" to #1 and a big fat "no" to #2. Most patients go into a doctor's office looking to leave with meds, a referral, or an order for a procedure. Not me. I know what's going on and I know what's causing my thyroid to be so angry. It's Bartonella. Now, we continue with the waiting game. The one thing I don't like about it is when it passes, what will be the next cycle? It's also a guessing game. Every day is a new day. Thank goodness for that because there have been plenty of dark days and plenty of tears. This is hard. Not the thyroid part. That's only a small part of it. The whole Lyme thing is hard. No one should have to go through all of this. Actually, no one should have to go through ANY of this. It's something that can be prevented if diagnosed with reliable testing. And...therein lies the rub. There are no reliable tests to diagnose it. Doctors refuse to acknowledge it. Family and friends refuse to believe it. Medical boards try to prosecute the "quacks" and "crackpots" who treat it. The people who have it are too sick and fatigued to fight it. Most of us don't have the finances to pay for it. It's time for all of that to change. It's been almost one year since I started treatment. Lyme has been more in the forefront of the media since celebrities are speaking out about how they're dealing with it. Maybe, soon, something will happen that will change the pattern. Until then, I just have to remember how far I've come, mostly because if I hadn't fought to get out of the network and choose a Lyme literate medical team, I would be on antidepressants again, told it was all in my head, scoffed at by other doctors, and who knows what else. For about a year I was circling the drain and I knew it could only get better from there. Who knows where I'll be next year? Leap year. Every four years. It only happens every...four...years. That was today. Sometimes, that's what having one good day with Lyme feels like...that it only comes around every 4 years. There's a lot that has to happen in order for someone with late-stage neurological Lyme to get back to feeling like they used to. Until then, you just find a new normal. Sometimes, that new normal means you might have to go back to bed after the bus picks your daughter up in the mornings. What I've had to learn is that if I have to do that in order to function...that's okay. If I feel like I haven't gotten enough sleep after sleeping 9 hours straight the night before and need a two-hour nap in the middle of the afternoon...that's okay. If I can't get out of my chair all day long...that's okay. If all I can do is sit and knit or crochet most of the day...that's okay. It's all okay, because one day I'll have a day where I can get up, stay up, vacuum the first floor, start a load of clothes, and throw something into the crock pot for dinner. That's all I'll get done that day, but...that's okay.
I've had to set a lot of new expectations for myself. If I can't do it, I can't do it. And, let me tell you... Most of the time, I can't do it. Just this past week I had a couple of pretty good days. I was definitely not functioniong at 100%, but I also wasn't functioning at 25%, and I still took breaks when I could. Those couple of days are promising, but they won't last and I know they won't. Lyme is all about cycles. Bacterial growth cycles. Bacterial die-off cycles. Pain cycles. Messed-up sleep cycles. Brain fog cycles. Mood swing cycles. Rage cycles. Fluctuating body temperature cycles. There are too many to list. I don't have control over any one of those cycles. I just have to let them run their course. They are different for every person with Lyme. Some people have cycles that last a couple of weeks, 4-6 weeks, or a couple of months. Mine tend to go on and on for months. Just this latest one with my thyroid is taking forever to work itself through to the end. After that one is over, another one will start. Which system of my body is next? I don't know. It's made its way through all of them. You cannot talk to one person with Lyme and then talk to the next and expect to hear the same story. All of us handle Lyme differently because Lyme handles us differently. Even with those differences, I know one thing that's the same for all of us. Bad days far outweigh the good until the treatment takes hold and the tide starts to turn. Right now, my good days feel like they only happen every four years.
I wasn't dizzy. I just fell and I did it with great panache, although it was lacking in the grace department. Parts of me that didn't even hit the concrete are sore today. I fell totally on my right side and banged up my knee, too, just for good measure. My pinky finger is killing me. Thank goodness I didn't break anything because that would lead to a whole new set of problems and everyone knows that I have enough of those already.
I guess the bright side is that it happened when I was at home and I wasn't alone.
Taking a dive in the Walmart parking lot or outside of the post office? Not on my bucket list, thank you very much. Monday, I spent the better part of the day at the hospital for my thyroid uptake scan. I had to be fasting after midnight, but hadn't eaten since 5. I took the I-123 capsule for my radioactive iodine uptake (RAIU) scan at 0925 and was told I could drink something in 1 hour and eat in 2 hours. I had to swallow a capsule that had a small amount of radioactive iodine in it and, after lunch, went back for the scan. The first part was scanning my thigh which gives them a baseline to go on since that's the only part of the body they can scan that's farthest from your thyroid. They also scan the thyroid. The second part of the scan was in another room. I had to lay on a table similar to what CTs are done on. My head had to be so far back it felt like I was standing on my head. That part lasted about 10 minutes.
After it was over, a doc and intern came to talk to me to go over the results. I was told earlier that 90% of patients have to come back the following day for another scan. The whole time I was thinking...well, I'm never a part of the majority. I know I'll be one of the 10%. I was right. My thyroid uptake was 0.09%. He said there was no way to improve on that. My thyroid clears iodine just fine. He asked me (as did the endocrinologist) if I remembered getting sick recently...and I laughed and laughed and laughed. Are you kidding me? I had to go through explaining what the PICC line is for. "I have late-stage neurological Lyme disease." Then they say, "What?" I say, "I have late-stage neurological Lyme disease with Babesia, Bartonella, & Mycoplasma." Blah, blah, blah. It's like they've never heard of it. So, come to find out, I have subacute thyroiditis. Basically, my thyroid is very angry and inflamed. This is what the endcrinologist suspected. Funny thing...for over a year I've been saying that something is wrong with my thyroid. I don't care if it doesn't show up in the results or if the changes in the results are too minor for the doctors to consider. I've been saying all along that "something is wrong with my thyroid." Guess what?! Something is wrong with my thyroid!! Both the doc in Nuclear Medicine and my endocrinologist said that subacute thyroiditis resolves in about 4 months or 6 months at the latest. It's been going on a lot longer than that. I know it has. With Lyme, you just can't put timeframes on things like that. When I get sick it takes a lot longer for me to bounce back. Here's what I find to be EXTREMELY interesting. When you start treatment for Lyme they only target one or two things at a time leading to an increase in the symptoms of the co-infections that are NOT being treated at the time. That makes so much sense because all of this got much worse after I started treatment in April. They're treating the Lyme and Babesia now, not the Bartonella or Mycoplasma. What's happening now is that I have almost no TSH in my body. When the inflammation swings back to where it's supposed to be it may rise well over the normal limit meaning I might have to be on Synthroid for a short amount of time until it all levels out. When your TSH is low (in conjunction with results of other thyroid tests) they look at HYPERthyroidism. When it's high, they look at HYPOthyroidism. With me...looking at the other thyroid tests and the thyroid scan it just shows an angry thyroid. If you're going to have a thyroid problem, this is the one to have...so they say. Yesterday, I went to the endocrinologist. For well over a year I suspected I have a thyroid problem. The doctor suspects I have subacute thyroiditis which usually follows a sickness of some sort. Now, try to nail that one down. Who in the world would know when I've been sick because I live in a perpetual state of sickness? I told him that last February I had gotten terribly sick, but it was only for a couple of hours. I was sweating profusely and my temperature was 96 degrees on two different thermometers. Everyone else I told blew it off. He thought it was interesting. I have repeat thyroid labs to draw and have to get a thyroid scan which requires the ingestion of a radioactive isotope. I will be glowing a little more than usual, I suppose. Hopefully, everything with the scan will come back clear. The thyroiditis will just take time to pass. Lyme has aggravated a lot of things in my body and this is just one more.
I am worn out from yesterday. I'm tired. I have a headache and, lucky me, I have 6 IV infusions to do today. Yesterday, I had to get up really early to draw my blood. I had my appointment with endocrinology in the afternoon. Last night was our daughter's band concert. That's all I did yesterday. It doesn't take much. Today, I won't be doing much either. I may or may not be able to take a shower because sometimes...it's not a choice. What's interesting about my appointment yesterday is that the doctor asked me about Lyme and my treatment protocol. He has a 22-year old male patient who is a college student that tested positive for Lyme. He didn't know how to treat Lyme. He showed me the patient's lab results and read his history to me. No...I have no idea who it is. There were no HIPAA violations, so don't go looking for any. I gave him my card with my blog address on it and said he would pass it on to the patient. What's even MORE interesting about that appointment is that I wasn't scheduled to see this doctor. When I originally made the appointment I was supposed to see him but they told me I wouldn't be able to get an appointment with him until sometime in February and scheduled me with someone else. Earlier in the week they called to tell me that doctor wasn't going to be in and I would end up seeing the first doctor after all. Funny how those things work out. I think that happened because I was supposed to talk to the doctor about Lyme and he's supposed to pass my information on to his patient. There are no coincidences! I don't know if it's the weather, the Full Wolf Moon tomorrow night, or a combination of the two, but I am having pain like I haven't had in awhile. I usually have some type of pain somewhere in my body, but this is constant and crushing. When it isn't a crushing pain it changes to feeling like my limbs are being wrung out like a dishrag.
You may believe about an increase in pain or inflammation with weather changes, but you may not believe in those changes during the different moon phases. I believe it. The Lyme community as a whole believes it because they feel it. It is not a coincidence. You can read about how the moon affects your health here. I also know from working as a nurse in the emergency department and as a phlebotomist working with Alzheimer's patients that strange things happen in the ED and Alzheimer's personalities change when a full moon comes around. While yesterday was bad and most of today was too, I can only hope and pray that tomorrow will be better. If I can amass the energy, I'm going to try a new turmeric tea recipe in a few minutes. Some of the ones I've tried before haven't tasted very good. Turmeric, in its powder form, is an excellent anti-inflammatory. Here is the recipe I'm going to make this time. I'm in the midde of the last four IV infusions out of 6. Ordinarily, I would have done the Lactated Ringer's (yes, the apostrophe there is correct. It's also known as Ringer's Lactate) and the Diflucan earlier in the day, but I was too tired, had a headache, and the pain has been almost more than I can handle. ALMOST more than I can handle. Not quite. Lyme's not going to win today. I'm angry. It's trying to ruin my life. The only things I have are Facebook and writing my blog. I get out once a week for church and once a week to go to Walmart. If I have a good week, I may get out for a short trip on one or two other days, but that's pushing it. Lyme may slow me down, but it's not going to win. So, here I am...hanging on until the Full Wolf Moon and nasty winter weather passes. |
AuthorMy name is Deanna...proud Navy wife, mom to one, follower of the One, pianist, registered nurse, avid knitter, crocheter, reader, & lover of languages. I also love to write. I have had undiganosed Lyme disease for 32 years following a tick bite when I was 11. Archives
March 2017
Categories
All
|