what you need:
what you do:
Place all ingredients in a blender and process until well blended. Enjoy hot or poured over ice.
Despite having more time this trip, I did not get to finish writing about all my appointments. Unfortunately now most of what happened is sort of a blur. I did try to record the appointments, but I am not sure everything was recorded. I haven’t even checked the recordings yet. Things have been really busy since coming back with getting No Junque going, church, and a new dog. But here it goes…as far as I remember.
Tuesday – 09.10.2013
I only had Dr. K scheduled that day for 11 AM so had some time to relax in the morning. My mood was off to say the least, but I didn’t actually realize how OFF I was that day until later in the week when I was done with Biltricide. I told Dr. K how I had been feeling and what had been going on – cavitation surgery, PFM (porcelain fused to metal) crown removal, mild anxiety on and off, still bloated, etc. We talked for a minute then I got on the table for ART (Autonomic Response Testing).
As soon as I got on the table tears started to flow. I was very emotional (probably from Biltricide), plus over tired from time zone changes and not sleeping well, and just worn out, and it sort of came out during the appointment.
He added a few supplements to my treatment plan and then ordered an IV that day. After the appointment I walked into the bathroom and just cried for a while. All the emotions I had been holding in just came flooding out. I then went to the treatment room to get my IVs. One of the other patients, who was just leaving, could tell that I had been crying. We started talking and she assured me that it does get better. She said she was so sick that she wanted to kill herself yet here she is feeling better and traveling the world. She said that Dr. K is amazing (which I already knew) and that I will be healthy again. It is exactly what I needed to hear that day. I know I am in good hands with Dr. D and Dr. K yet there are times I go to a dark place where it feels like this will never end. Part of that has to do with die off.
The rest of the day was rough and also sort of a blur. I went for an ultrasound of my thyroid around 5 PM which thankfully was ok. But when I talked to Bob that evening I just started to cry again. I felt so overwhelmed with everything and it was hard to see things ever getting better.
Dr. K also said that he wants me to take Biltricide again, but after doing a couple of liver/gallbladder flushes fairly close together. He said my liver and gallbladder are really congested and under stress and the Biltricide would go through better after doing some flushes.
Wednesday – 09.11.2013
I still felt off that morning and in addition wasn’t allowed to have coffee, take a shower, or brush my teeth because I had a thermography scheduled that morning. For any coffee drinker our there I probably don’t have to mention how hard this was. I thought my appointment was at 8:30 AM, but when I got there I was told that it is actually at 9:30 AM. I was not happy!
I also had my long appointment with Dr. D that day where she answers more questions, goes over my treatment plan from Dr. K with me, and muscle tests all my current supplements. She also checked to see if there was an issue with all the dental work I had done and she said there wasn’t. She detected some microbial activity but according to Dr. D it’s nothing more than she would expect from anybody who had just had all this dental work done. Muscle testing indicated that the microbial activity was clearing with Watch Your Mouth and PrimiTooth Powder.
My mood was better that day but I still felt slightly off. It was my last day of Biltricide but I forgot to take the last dose in the evening.
Thursday – 09.12.2013
I felt much better that day and my mood was back to normal. When I walked into my appointment with Dr. Klinghardt it felt totally different than the appointment on Tuesday. During my visit in May he had asked me if I am getting any results with the MMS enemas. I told him I was and that I had pictures, which he wanted to see, but of course I could not find them on my phone. This time I had them with me on my iPad and he wanted to see them. What I thought was just a lot of mucous is actually a rope parasites according to Dr. K. He told me a little bit more about them and said there are two PDFs that someone was trying to get published but couldn’t and suggested I read them. Incidentally, someone had already posted them on the GAPS Help Yahoo group and I was aware of them.
I got on the table for more ART and he determined that the rope parasites had already moved into my small intestine. He also confirmed that they could be causing the constant abdominal distention I am dealing with as well as the constant hunger. In addition to an overwhelming enema protocol I was also put on oral anti-parasitics to reach the parasites in the small intestine. We also did another heavy metals challenge test while I was there and he added some oral metal chelators and anti-fungals.
Later that day I had an osteopathic appointment with Dr. Aleks which was great as usual. Dr. K also said to use the PEMF mat that day and the next day.
Friday – 09.13.2013
It was my last day at Sophia and I was scheduled to go home that day. I had a relaxing morning, packed my suitcase, then headed over to Sophia. I got on the PEMF mat first then had my last appointment with Dr. D. I wanted her to muscle test various foods but forgot to bring the bag of food samples I had prepared at home. For muscle testing, it is best to place all your supplements with a daily dose into little seal-able plastic bags. I started doing the same thing with food, but accidentally left the bag of food samples I had prepared in the freezer.
She muscle tested the few foods I did have with me and we discussed the very extensive treatment plan from Dr. K. After I was done I packed up all my stuff and headed to the airport. Both Dr. D and Dr. K also recommended cryotherapy in Germany so that is something I am looking into now. You can read more about how it is beneficial here.
I flew to Seattle yesterday and as usual it was a long day of traveling. I got up at 5 AM my time, which of course is 3 AM Washington time, and it was midnight my time when I finally got to bed. Then I woke up at 3 AM today so I am worn out.
Today I had only two appointments – a 30 minute consultation with Dr. D and a 60 minute acupuncture appointment with Melanie. I filled Dr. D in on what has been going on and how I have been feeling. Basically, not good. I still have gallbladder pain most days, I had UTI pain for a week which then just vanished, lots of increased GI issues and more. She did her usual testing and found that I have fungal and parasitic stress, and that my thyroid, gallbladder, and intestines are stressed. She feels that microbes are affecting my thyroid. Dr. D recommended some supplements and also told me to start my prescription of Biltricide. She also agreed that it might be a good idea to get an ultrasound of my thyroid to get the lump checked out.
I am staying with a friend (another patient at Sophia) this time and had time to come back to the house in between my appointments. I cooked some food, drank some coffee, and started my meds. Next I went to the spa for acupuncture with Melanie. She is really nice and very knowledgeable. She too said my intestines are stressed and she said my liver was having a hard time. She placed all the needles then told me to rest. At that point I started to cry – sort of. The first two days are usually pretty overwhelming. After traveling, time zone changes, lack of sleep, new information, and possible die off from new meds/supps, you just feel a bit “worn”.
After acupuncture I went back to the house and had some lunch. Then I ventured out, found a Panera, and sat outside for a bit. I thought about going to Pike Place Market, but I was just too tired and didn’t feel like walking around So I chilled in Woodinville instead, made the ultrasound appointment for tomorrow at 5 PM, and read for a little while. I came back to the house and was greeted by my friends awesome kids and their nanny. We talked for a while and then watched a movie together.
Now it’s only 8 PM and I feel like going to sleep. Really hoping I will be able to sleep later than 3 AM tomorrow.
So much has happened since my cavitation surgery early July. Actually, a couple days before the cavitation surgery I noticed a big, hard lump in my neck. The next day it seemed smaller, the day after that I had the surgery, and then things kind of went crazy with die off, pain, gallbladder attacks, anxiety and more. So I kind of forgot about the lump or maybe it did go away.
In the meantime I went back to see Dr. Foley for a dental cleaning and some x-rays. She had noticed a mercury tattoo on my upper right gums and wanted to see what was going on. She found that I still had a PFM (porcelain fused to metal) crown on the top right and her take was that it contained mercury which was causing the mercury tattoo. I got my cleaning and we scheduled the crown and tattoo removal for earlier today. I also had a little skin tag that formed after the cavitation surgery on the bottom right and she said she would remove that as well.
So I went in at 7 AM today and I left at 10 AM. While working on the crown, tattoo, and skin tag, she also noticed some leftover amalgam on the bottom right. Since she was already working on me she decided to go ahead and remove that as well (free of charge – thank you Dr. Foley!). That means I was numbed and had work done on the top right, bottom right, and bottom left. I think all in all I got 8 shots and now I am left with a hole in my upper gums and a very sore mouth. However, I am SO glad the remaining metal is now gone.
Back to the lump in my throat. I noticed that it was back around August 18th. I was tilting my head back and it was just sticking out. It felt very hard, just like the first time I noticed it, but I could move it from side to side, which felt really weird. Not sure if you can tell in the pics below, but it’s rather big. DH said I should name him Herbert. I was thinking Ezra.
I happened to have a phone appointment with Dr. D the next day and described the lump to her. At that point I hadn’t taken pictures of it but now wish I had. She said it could just be a calcified lymph node but to be on the safe side, to have it checked by my local doctor and get either an ultrasound or a biopsy. Other new symptoms were excessive sweating, increased appetite, minor weight loss despite eating more, and mild anxiety. I called my local doc’s office and was able to get an appointment August 26th. The doctor who saw me, not my usual doc, took down all my symptoms, then felt around on my lump for a while, then said she would go talk to my doc. After a few minutes she came back in with him, he also felt around on my lump and said he could order a CT. I asked if an ultrasound would suffice but he said it wouldn’t but that he is not really concerned about what is going on. He suggested waiting 4 to 6 weeks and if it’s not gone by then to come back and get the CT. Since I had just had two CTs within 4 weeks I decided to wait.
Once I got home I took the pictures above and my very smart friend who is also a nurse suggested it could be a goiter. Since the other symptoms I was describing above are consistent with hyperthyroidism, and that can be a cause of goiters (not just hypothyroidism), I decided to reduce my thyroid medication again slightly. On a side note, when I first started seeing Dr. D I was on about 75 mcg Cytomel and I a now down to 56.25 mcg! After a few days on the lower dose most of those symptoms were gone or reduced but the lump is still there. Luckily I am going to Seattle next week for more appointments with my doctors and will have them check it out.
I also went to see an oral surgeon about having some metal plates in my upper jaw removed. Dr. K thinks they might be impacting my health negatively. The reason I have them is because I had a cross bite but did not have braces when I was a child. By the time I started checking into it, which was in my early 20s, I was told that the cross bite was not fixable with braces alone. I consulted three different orthodontists I believe and they all said the same thing – braces and surgery. So that’s what I did. After I had had the braces for about 1 1/2 years they broke my upper jaw in three places, expanded it, then put the plates in to hold it all together. I was hoping that Dr. Foley could remove them but she said they go too far up to right under my eyes and she is not qualified to do it. That’s why she referred me to Dr. McKenna at Vanderbilt hospital.
While Dr. McKenna did not think that metal in my body is an issue, or that the plates could be causing health issues, he did say that he could remove them. He said at most it would take 2 hours depending on how much bone has grown on the plates. It would be outpatient surgery, full anesthesia, and he said they would have to cut into my gums so they can peel my face back, and then cut out the plates. Fun! I was hoping to get all this done before my trip to Seattle next week but there just wasn’t enough time. When I mentioned it to Dr. D on the phone she said to wait at least 2 weeks after the surgery before flying. Plus she felt that getting the mercury tattoo and metal crown removed were more important.
So I got all that done and now I am actually hoping that the plate removal is not necessary anymore. Maybe with the cavitations gone and all the metal removed from my mouth, that will be enough to tip me over the edge as Dr. D called it and I will see some significant healing. That would be so awesome!
Last but not least, I have had a UTI since Saturday. As if all the dental work, increased die off, and the usual stuff going on wasn’t enough! I am trying to get rid of it with d-mannose, cantharis 30C, increased Vitamin C, and baking soda. If it’s not better by tomorrow I will get a urine test and will see what Dr. D recommends. Praying I won’t need antibiotics and that my lump is nothing serious.
When people find out that I have chronic Lyme disease, and that I travel to Seattle to see doctors, I usually get very similar reactions. I have probably mentioned some of them on this blog before. Here are some of the typical responses I get and my thoughts/comments:
- “My __________ had Lymes. He/she took antibiotics for 10 days and he/she is fine.” (It’s Lyme disease, BTW, not Lymes).
IF you get bitten by a tick, and get a bull’s eye rash, and you take antibiotics immediately, you can probably avoid getting chronic Lyme disease. However, if you were bitten a long time ago, but your symptoms didn’t come on until much (think years) later, a 10-day course of antibiotics will do nothing for you. Not everybody gets a bull’s eye rash and often times we aren’t even aware that we were bitten by a tick. You may not have any symptoms at all initially or for a long time. Depending on your health history and/or stress level in your life, it could hit you much later or not at all.If you have had Lyme disease for a while, which can be determined (sort of) with a CD57 blood test, antibiotics might be helpful but you will need a lot more than 10 days worth. People with chronic Lyme usually end up taking heavy duty antibiotics for 2 to 3 years. Many of them get a picc line for self-administration of antibiotics via IV, which is usually not covered by insurance.Borrelia burgdorferi, the actual bacteria that causes Lyme disease, is actually really smart. It has the ability to “hide” by cloaking itself and avoid being killed by antibiotics. In the meantime, the antibiotics people take will kill other bacteria in the body, good or bad, leaving your gut and immune system defenseless. When antibiotic treatment is stopped, and most of your good bacteria have been depleted, the Lyme bacteria come out of hiding and often times people end up feeling worse than before.
That is a very brief explanation and it’s obviously much more complex than that. However, based on the research I did, and given that I already had pretty significant gut dysbiosis, I did not feel comfortable taking antibiotics.
- “Oh, that’s like Lupus, right?”
The short answer is, yes, chronic Lyme can present like Lupus. It can also present like Parkison’s, Chronic Fatigue Syndrome, MS, Rheumatoid Arthritis, Depression, and many, many other illnesses. Borrelia burgdorferi has the ability to get into your blood stream and affect just about any organ and system in your body. It is also believed that it can cross the blood brain barrier causing neurological symptoms. Some interesting reading about this here.
- “You go all the way to Seattle? REALLY?”
Yes, I travel all the way to Seattle to see doctors. Why?
a. Because it felt right and because I believe they are among the best doctors in the world for people with chronic illnesses, whether those illnesses are caused by chronic Lyme or some other infection or underlying cause.b. All the doctors and other staff at the practice I go to are compassionate, kind and caring.
c. The doctors spend anywhere from 30 to 90 minutes with me, listening, and I mean REALLY listening, assessing what is going on with my body, testing, and evaluating.
d. The doctors I see are always up on the latest research, findings, testing, and treatments.
e. They don’t just treat the symptoms but look at the whole person – emotional, physical, and spiritual. They recommend dietary and lifestyle changes along with using supplements to kill bacteria/parasites/fungi/viruses and to build the immune system. If necessary, they will use medication including antibiotics.
f. They think drinking coffee is fine. (OK, I wouldn’t travel all the way to Seattle for that but it sure is nice).g. The doctors I see recommend GAPS (see this link for more information), they know that saturated fat is good for you, and they don’t buy into the conventional wisdom regarding diet like the food pyramid.
h. While just about every doctor I have seen has literally freaked out about the fact that I am on a replacement dose of hydrocortisone, my doctors realize that it is supporting me right now, as I am fighting these infections and symptoms, and we can worry about weaning off of it later, when I am feeling better. For reference, I currently take 30 mg of hydrocortisone per day. A healthy person produces anywhere from 20 to 40 mg a day naturally, more during times of stress. So I am taking what my body might produce on its own, versus mega doses of steroids.
There are many more reasons why I travel to Seattle, but those are the key points that come to mind right now.
- “They don’t have good doctors here?”
What I wrote above in #3 also answers #4 – sort of. Yes, there are good doctors here in Nashville, but none of them offered all the things I was looking for. They either utilize antibiotics (right for some, not for me), wanted me to get off hydrocortisone, told me to eat more fiber (the last thing I need), etc.
- “You can die from that.”
While I don’t believe I will die from chronic Lyme, because I am fighting with all I’ve got to get better, that comment really isn’t helpful. Neither are the other comments but I truly believe people don’t say these things to be unkind. I believe they mean well and have good intentions. Despite the fact that Lyme disease and co-infections are spreading rapidly, a lot of people still know very little about Lyme, let alone co-infections. In 2011, when I was first diagnosed with a blood test, all I knew was that you can get it from a tick and it can be very serious.
Speaking of the CD57 blood test above, here are the reference ranges:
- >200 is normal
- < 20 severe illness
- 0-60 is seen in chronic Lyme disease
- > 60 Lyme activity indicates improvement
When I first got tested in June or July of 2011 my level was 20. Roughly 6 months into treatment it dropped to 3, which is not unusual. I just had it tested again and it is now up to 39!
A few days ago I posted about dealing with anxiety, negativity, and thoughts and fear of failure. All those can be due to Lyme disease and/or co-infections like Babesia, Bartonella, and others. However, I believe my symptoms may have been from a lack of testosterone and too much hydrocortisone.
So after the cavitation surgery I increased my daily dose of hydrocortisone from 30 mg to 47.5 mg. Your body naturally increases cortisol during times of stress. If you are supplementing with hydrocortisone, you need to increase your dose which is referred to as stress dosing. It’s kind of hard to gauge just how much your body would produce on its own, but after a while you get the hang of it. Within a few days I reduced the dose to 42.5 mg a day but then I was stuck there. I felt utterly fatigued, had lots of heart racing, just didn’t feel well, and then the negativity and anxiety started. Those can be symptoms of low cortisol so I kept my dose where it was.
I also had some other symptoms like excessive sweating which I thought may have been caused by too much thyroid medication. Needless to say it was getting pretty confusing. Yesterday morning the anxiety had lessened somewhat, but I felt completely unmotivated, had absolutely no energy, was more negative than I had been in a long time, and all I wanted to do was sit on the couch and watch TV. I had a chiropractor appointment in the afternoon and almost canceled it because the mere thought of getting dressed and going to the appointment seemed overwhelming.
While I was on my way home from the chiropractor I was thinking about the fact that I have been on a much lower dose of testosterone for a while now. Dr. D put me on 5 mg/day sometime last year but for various reasons I was unable to get a refill on my prescription when I ran out middle of June. (If you are aware of the controversy around compounded medicines right now then you can probably guess why it’s hard to get a refill). My local doctor RXd some for me, but she was only willing to prescribe 0.5 to 1 mg/day so that’s what I have been using. Apparently it wasn’t doing much for me. When I got home I decided to try a larger dose and I applied 4 mg of testosterone cream. Within about an hour I started to feel more positive, had more energy, and wasn’t so negative.
Back to the hydrocortisone for a minute….you take it in divided doses with the largest dose in the morning. You then take subsequent doses every 3 to 4 hours. On 30 mg a day I would start my day with 10 mg, then taper down slightly with each dose. After the cavitation surgery I started my day with 15 mg, then 10 mg, another 10 mg, and then would taper down.
This morning I got up and took the 15 mg dose of hydrocortisone and also applied another 3 mg of testosterone cream. That was around 5:30 AM. My mood was better, the anxiety was reduced and I had much more energy. At 9:30 AM I still didn’t feel the need for another dose of hydrocortisone which is a huge change from the previous days when I couldn’t wait to take my next dose. I decided to take only 5 mg instead of 10 mg and that seemed fine. Overall today, by the time I take my 2.5 mg bedtime dose, I will have taken 35 mg total which is 7.5 mg less than yesterday. Yet I had way more energy today and felt much better. Yesterday all I accomplished was a short trip to Whole Foods and the chiro appointment. Today I did laundry, ironed clothes, took a very brisk 35 minute walk, dusted all the blinds and window sills, went to Costco, worked on my lotion business, and made pizza for DH. That is a huge change on a much lower dose of hydrocortisone.
Here is my theory about what happened and it could be totally false, but that’s what I am going with. I believe that being on the lower dose of testosterone caused the fatigue, depression, negative thinking, and other symptoms. I thought they were due to low cortisol and kept my dose higher resulting in elevated cortisol levels. The elevated or excess cortisol probably caused, or contributed to the anxiety and also caused the excessive sweating. Adding the larger dose of testosterone back in improved my energy and mood which made me realize that I was taking too much hydrocortisone so I lowered my dose. I hope that I am right and that the increased dose of testosterone with the lowered dose of hydrocortisone will bring things back into balance.
Having balanced hormones is so important and being low or high in any of them can cause pretty severe symptoms. Having said that, even if you have the exact same symptoms I have, please don’t just start using testosterone cream. I have regular blood tests done through Dr. D to monitor my levels and I did have an RX for 5 mg a day. I DO NOT recommend using bio-identical hormones (BHRT) on your own or without any kind of testing to confirm whether you need them. BHRT should be used responsibly under the supervision of an experienced physician!
what you need:
- french fried onions (like these for example)
- ranch dressing (any brand will do)
- pork chops (however many you need – I made two)
what you do:
Slather pork chops with Ranch dressing and coat all sides. Crumble some French fried onions and pat onto pork chops. Place in a baking dish and bake at 350 degrees for 35 to 45 minutes. That’s it.
Last week I had a follow up appointment with Dr. Nina Foley, the dentist who did my latest cavitation surgery. I wrote about this surgery and the recovery here and here. Some of the sutures had already dissolved when I went to see her and one of her assistants took out the remaining sutures. My gums and cheeks were still a little bit sore, especially on the left side, but overall I actually feel pretty good as far as the surgery sites go. I am back to chewing food, I am able to pop my removable partials (I am missing teeth #s 19 and 30) in and out, and my energy is coming back slowly. I am still on a higher dose of hydrocortisone than I was before the surgery, but I imagine I will be able to start weaning pretty soon and hope to get back to my pre-surgery dose in a few weeks. I could probably write an entire post about that so won’t go into anymore detail here.
Everything seems to be going pretty much as I had expected, but I am dealing with way more detox than I thought I would. Aside from a coated tongue and some other signs that I am detoxing, I am dealing with quite a bit of anxiety. It had flared up a few times before the surgery, but usually when I increased anything that can cause die off or will facilitate detox like cilantro (really tough on me), Clear Way Cofactors, and some other supplements. I had to cut back on my antimicrobials, on GcMAF, and on said detox supps. However, when I talked to Dr. D last week I discussed doing a gallbladder flush followed by a short broth fast and/or coconut oil cleanse. I did the flush yesterday and started the coconut oil cleanse today and it is kicking up my anxiety again.
All this made me think of how most people, when they first find out that I have an illness, look at me like I am crazy. I have written about this here and have mentioned it on Facebook. The usual response is, “really, but you look so good/healthy?!” You can hear the doubt in the tone of their voices. I am not sure exactly what having an illness looks like to people, especially considering the multitude of illnesses out there, but my guess is they are noting the following:
- I have hair
- I don’t have dark circles under my eyes
- I am not pale but actually have a nice tan
- I am not walking with a cane
- I am not in a wheelchair
- I am not bedridden
Those are the few things that come to mind. What people don’t see is that I have dealt with quite a bit of hair loss on and off and my hair is much thinner and more dry than it used to be. They don’t see that I don’t sleep well and wake at least once during the night (and no, that is not normal!), therefore waking up tired and out of it every day. They don’t see how dry my skin is despite all the effort I put into keeping it moisturized and eating a healthy diet. They don’t see the headaches and backaches I deal with. They don’t see that I have to take a beta blocker to be able to go for a walk or just walk up one flight of stairs or otherwise my heart will start racing. They don’t see that I went from running, playing tennis, hiking, riding my bike everywhere, lifting weights, going out and having fun with friends, and working a full time job, to spending a considerable amount of time sitting on the couch because I am exhausted and having difficulty working a part time job from home. That’s only part of what I am dealing with. And they don’t see the anxiety, the difficulty concentrating, and the trouble remembering things (also not normal even if you are over 40 or 50 – please don’t tell me it is because that’s just BS and probably another post I will write!).
Sometimes I can’t remember how to get to Whole Foods for example, although I have been there many, many times. Anything I haven’t done in a while I may not be able to recall. The other day I couldn’t remember if Jerusalem is a city or a country and if it is a city, whether it is in Israel or not. It’s like the information is in my brain, but for some reason I can’t access it or if I can access it, I am not sure if it is accurate. Unfortunately to those that don’t know me, or that don’t know that Lyme and Co-Infections affect the brain, I seem pretty stupid when stuff like that happens.
So the anxiety I have been dealing with has centered around past failures, my career or lack thereof, starting over at age 47, 48, or later, and what to do with my life when I am healthy. Do I go back to database programming although I am utterly behind and will not only have to get caught up with advances in technology, but also re-learn some old stuff? And how do I explain to any prospective new employer that I have 16 years of experience but my coding skills are that of a programmer with maybe 5 years experience? Do I go into a different field and if so, what? These are all things I am pondering. In addition, once I found out that I have Lyme disease and 3 other tick borne diseases and 3 chronic stealth infections, and a host of other issues, it all sort of started to make sense. At one point, due to the physical illness which affected my brain, it became harder and harder to concentrate, focus, and learn new, more complex database programming strategies. I figured once I am healed I will get back to working and will get caught up. But now suddenly I have this concern that it was the other way around. I started to worry that my lack of confidence and fear of failure led to the physical illness and now the physical illness is a way to avoid failing at my job.
In a way that does not make sense. It is true that I have always had confidence issues and some self doubt, but it is also true that I have never let that stop me from moving forward. I was terrified of moving from Germany to the US, on my own, and going to college. Actually, back then I was pretty negative and probably had myself convinced that I couldn’t do it. But I did it anyway and I graduated with a degree from the University of Texas. I have had fears about applying for and starting new jobs, but always did anyhow. And in just about every job I have been in I was moved into some sort of a leadership position, which also terrified me, but I did it anyway! So where is this sudden anxiety that I am a failure coming from? Why am I suddenly focusing on and thinking of the times I failed or messed up in past jobs, rather than on the times I succeeded? I have no idea but it feels pretty awful to doubt yourself this much and go through all this anxiety. And that is what people cannot see when I say I have an illness! In some ways the emotional torment I go through is worse than the physical pain and fatigue I experience on and off.
What I am learning about myself, as I am going through this anxiety, is that I do not do well with making mistakes or having failed at something or possibly not being smart enough to learn more advanced programming techniques for example. If I can blame it on Lyme affecting my brain then it’s OK, but what if it’s not because of Lyme? What if it’s because I am simply not smart or intelligent enough? I don’t like that thought but I also realize that I am being really, really hard on myself. I have friends with PhDs in high paid jobs, I have one friend who is an MD, and I have friends who have a high school diploma and work a minimum wage job. I like all of them for who they are and their personalities and characteristics, not what they have accomplished in their lives, how smart they are, or how much money they make. So why can’t I do the same for myself?
The other thing I am realizing is that I am not really sure what I want to do when I am back at full capacity. I am not really passionate about database programming. It’s kind of fun, I enjoy it to a degree, but I can’t say that I am excited about sitting around all day writing code. If someone said to me right now that I have to sit and read for an hour and I can either read about database programming or I can read about nutrition and health, I would definitely choose the latter. Health, science, diet, how our lifestyle affects our health, etc. are fascinating to me. The thought of helping someone else who is struggling with health issues is exciting to me. I have a heart and passion for people struggling with their health, yet on some level it feels like I am running away from my current “career” because I am afraid of failure. And what if I switch careers, go into the health field, and I hit a wall like I did with programming? What if I get to a certain level of knowledge in my new chosen field, but then can’t seem to move into a more advanced stage because I can’t wrap my mind around things or remember stuff? It’s hard to imagine that you will do well at anything when your brain is not working right in the present moment.
So how am I dealing with all this? I have posted on a Lyme forum and gotten good feedback, I have researched and read about the psychological effects of Lyme and co-infections (this article was particularly helpful), I have prayed and asked God for relief and for the truth, I have done EFT, I have talked to wonderful friends who get it, I have sat quietly and just allowed myself to feel the feelings, and I have asked others for prayer.
I have also tried to just apply logic:
- I was born with Rh disease and nearly died at birth
- I had 2 blood transfusions within the first 24 hours of being alive and did not have contact with my mother until I was 5 days old
- I was not breast fed
- I grew up on a high carb diet
- I grew up mostly with my mother and her parents and all of them are rather negative and were doubting not only themselves, but they were doubting me in anything I wanted to attempt
- I had tonsillitis repeatedly until I finally had a tonsillectomy at age 18
- As soon as I started my period around age 12 I had pretty bad pain (I was later diagnosed with endometriosis and uterine fibroids)
- I had digestive issues for as long as I can remember
- I took antibiotics various times throughout childhood, my teen years and even my 20s and 30s
- I took the birth control pill from roughly age 17 to age 24
- I ate a high carb, high processed food, very low to no fat diet for way too many years as an adult
- I had jaw surgery to correct a cross bite at age 27 and therefore have a ton of metal across my upper jaw
- I had an appendectomy at age 34
- I had a hysterectomy and left oophorectomy at age 37
- I struggled with an eating disorder, alternating between anorexia and bulimia, for many, many years thereby abusing my body
- My doctor recently said that most of her patients are on the spectrum (meaning the autism spectrum)
All that to say, I have never been a truly healthy person. I may have felt relatively good, but I think I have probably had underlying health issues from birth and it just kept getting worse and worse. I believe my gut was probably messed up from birth and gut issues equal brain issues. Considering all the above, and a bunch of things I dealt with as a child that are too numerous to list right now, I think I did pretty well for myself. And I am not surprised I ended up with all the current health issues. Still, I cannot seem to get rid of the anxiety or feeling like a failure.
On Tuesday I blogged about the first six days after my cavitation surgery which you can read about here. I have been improving steadily and figuring things out. I had mentioned that I woke up with a headache on day 6 and that headache continued all day. I now believe this was due to low cortisol. I take a replacement dose of hydrocortisone. During a stressful situation like this, the body would normally produce extra cortisol to help with the stress. When you are on hydrocortisone, you need to stress dose to emulate what your body would normally do. I had been doing that but I think it wasn’t enough. So here is what has been going on.
Tuesday – 7/16 – Day 6:I never did go to the store that afternoon because I just felt too tired and worn out. Instead I took it easy, watching TV, reading, and chatting with a friend. The gallbladder pain and in my teeth got pretty bad around evening so I took another Percocet and Aleve. It helped with the pain but instead of making me sleepy, the pain meds actually made me feel kind of wired making it hard to go to sleep. Percocet has that effect on me at times while other times it helps me sleep.
Wednesday – 7/17/- Day 7: Woke up with less pain in my teeth but still had a mild headache. The gallbladder pain was also still there but mild. My heart was racing somewhere around 155 BPM And I felt dizzy. I took my meds, including a beta blocker, and drank my coffee black. I figured putting coconut oil in it would just make the GB pain worse.
I emailed a dear friend of mine to discuss stress dosing with hydrocortisone. After getting her very valuable input I realized that I had not been stress dosing enough and increased my dose for that day. It helped with how I was feeling.
Although I was hoping to just stick with black, coffee, water, and some broth that day, I ended up eating some lean protein throughout the day. The GB pain didn’t get any worse but it didn’t go away either.
I had scheduled a lymphatic drainage massage for 10 AM that day. It is important to help the body get rid of toxins during this time and a lymphatic massage was one of the things that was suggested. I am also drinking extra liposomal C, doing some dry skin brushing, taking my detox support supps, increased autohemotherapy from twice a week to every other day, and taking Epsom salt baths. The massage felt good and afterward I finally went to the grocery store.
Once I got back home I did some laundry but felt pretty tired and worn out. I took a bath than vacillated between the couch and doing laundry.
The swelling in my face and my gums is almost gone now. Most people probably wouldn’t even be able to tell. I can sort of chew soft food on the right side, although it feels a bit uncomfortable, and chewing on the left is still out of the question. Towards evening the GB pain got bad enough that I took more Percocet. Bummer!
Thursday – 7/18 – Day 8: Thanks to the Percocet I slept great. Woke up without any pain in my teeth or gums, headache was gone, but I still had mild GB pain. My heart rate “only” went up to 129, then came down to a normal level after taking hydrocortisone. I did not need a beta blocker that morning. Aside from the GB pain I actually felt pretty good, got stuff done around the house, ironed some clothes, and stayed busy. I had nothing but black coffee, water, and some clear broth all day but it did not make a difference in the GB pain at all. Because I was really hungry and started to get a detox headache, I had a small amount of food (just protein), and luckily it did not make the GB pain any worse.
Monday – 7/22 – Day 12: Not really much to say about days 9 through 11. My incisions are slightly tender. I still cannot really chew. I tried with some soft foods but end up chewing mostly with my front teeth which really doesn’t work very well. Haha. So I am still pureeing my food. The gallbladder pain was persistent every day in varying degrees but I managed to keep it in check with lemon juice, dandelion tea (hate this stuff!), castor oil rubbed on the liver/GB area while taking a bath, and taking ox bile with and in between meals. It seems to finally be gone now.
The first few days after surgery I wasn’t very hungry at all. My guess is that this was due to all the pain meds I was taking. Unfortunately my insatiable, non-stop hunger has returned. Hoping to figure out the cause soon because fighting hunger all day every day is hard.
During my last visit to Seattle to see my doctors at Sophia Health Institute, Dr. K pointed out that I have a cavitation on the bottom right where my wisdom tooth used to be. He wanted me to get it surgically removed that same day but the dentist he normally refers people to was going out of town that day and couldn’t see me. I now think this may have been meant to be. The dentist Dr. K recommended is supposed to be amazing at these cavitation surgeries, but I ended up going to Dr. Nina Foley here in Nashville who did a 3D CT. She noted that I also have a cavitation on the bottom left where the wisdom tooth used to be which was not visible on the x-ray. If the dentist in Seattle had seen me that day maybe he would have just done the cavitation on the right and we wouldn’t have known about the one on the left. As it turns out, this one looked worse than the one on the right, but was a bit smaller. Below is the update my dentist sent to Dr. D yesterday:
I performed debridement of both the lower right (#32) and lower left (#17) third molar areas of necrotic bone. The lower left had an appearance that is darker than I usually see in these areas, an area of scar tissue was very tenacious and noted over the site also (#17). Necrotic tissue in the lower left was black and a brown-black lobules of soft tissue, the lower right area was larger towards the distal aspect but not as dark in appearance. Both were an area of approximately 12 mm in length and 9 mm in height along the posterior mandible bilaterally. Access was approximately half of the size involved. The debris was gently debrided, suctioned and removed with curettes until solid bone was encountered in all dimensions. At the inferior border of the lesions the inferior alveolar nerve and adjacent vessels were seen and subsequently avoided to prevent any trauma to these structures. Both areas were irrigated copiously several times and checked for any residual necrotic areas. A piezon unit was utilized for bone removal.
Nasty stuff! These two teeth are associated with the small intestine, heart, circulation/sex, and triple warmer. Given all the digestive issues I have been dealing with, some of which are clearly in my small intestine, I am hoping and praying that the removal of these cavitations will really help.
I had these same cavitations removed June 2008 by a dentist in Knoxville. Incidentally, it was September 2008 when the daily abdominal distention started and my health started to decline drastically. That seems really odd to me!
The surgery itself was ok. When I had them done in 2008 I just got a local anesthetic, but I chose conscious sedation this time. Here is how it all went down and how I am feeling at this point:
Wednesday – 7/10: Took a 10 mg Valium at bedtime which helped me sleep. I have to admit I was nervous that night and was stress eating a bit. I had gotten an ozone injection into the one cavitation while I was in Seattle and despite being numbed first, it hurt like hell. That caused some fear of how much pain I might experience during surgery despite being numbed.
Thursday – 7/11 – Day 1: An hour before the surgery I took 0.25 mg Triazolam. I had never taken it before or Valium for that matter. Half an hour after taking it Bob and I left to drive to the dentist’s office. I remember talking to Bob about the first 5 minutes of our drive, and I remember THINKING I was fully present, but I realize now I was already pretty out of it.
Once they took me to the treatment room and got me in the chair they gave me two Tylenol and 600 mg Naproxen. They also crushed up another sedative which I had to take sublingually and put me on oxygen. I still thought I was pretty coherent but now everything is sort of a blur. One of the dental assistants came in to take my blood. Dr. Foley uses platelet rich plasma and fibrin from your own blood to pack the surgical site once she is done. This facilitates healing and bone growth and also helps to prevent infections.
I vaguely remember Dr. Foley coming in and saying hi to her. At one point my head felt uncomfortable and I told them it’s because of the hair tie and asked them to take it out. I wasn’t wearing one! They gave me a pillow instead. The only other thing I remember is feeling some slight discomfort when she was working on the right. She asked if I could feel that and when I nodded she numbed that area some more. After that I remember being woken up and given more pain meds.
The ride home and the whole rest of the day are also pretty much a blur. I spent the rest of the day on the couch wrapped in a blanket drinking coffee, water, and broth. It was recommended on the WAPF site to consume nothing but bone broth the first five days after the cavitation surgery and I thought that sounded like a good idea – at the time. I had gauze on both sides, which I had to change frequently, to control the bleeding. By evening the bleeding had pretty much stopped and I was able to take the gauze out.
Sometime in the afternoon the pain got really bad mostly on the left. Swallowing caused excruciating pain particularly in my tongue. I had been taking the prescribed Percocet (5/325) but it wasn’t helping much. We called Dr. Foley’s office and they said to add Ibuprofen or Aleve with the Percocet and that did help. With all the drugs in my system I slept fairly good that night.
Friday – 7/12 – Day 2: I woke up with moderate pain and took Percocet with Ibuprofen right away. It helped with the pain. My cheeks were pretty swollen and I was fatigued and out of it. Bob left to go to Florida that day for his grandmother’s 90th birthday celebration and I spent most of the day on the couch again, wrapped in a blanket, watching TV, answering emails, taking pain meds, and sipping bone broth.
I went to bed around 10 PM and woke around midnight once again with horrible, excruciating pain. I got up and felt slithgly dizzy and my heart was racing. The left side had started bleeding again so I put some gauze on it and bit down gently as the post-op instructions indicated. The pain was so bad I took 2 Percocet and 2 Ibuprofen. Around 1 AM the pain was tolerable and I went back to sleep. I kept waking up though feeling really uncomfortable.
Saturday – 7/13 – Day 3: I was awake again by 4 AM and the pain was back. I kept dozing off until about 5 AM at which point I got up.
I was crazy dizzy, jittery, my heart was racing at around 190 BPM, my vision was blurry and I was in pain. I made it downstairs and checked my blood sugar. It had dropped to 66. That’s not terribly low but when you are used to your fasting blood sugar being around 98, it’s pretty low. My vision was so blurry I couldn’t even see my pills clearly and the heart racing was so bad I had to keep sitting down. I realized that the WAPF suggestion of fasting with bone broth the first 5 days was clearly not working for me. Once the beta blocker, hydrocortisone, and pain killers kicked in I pureed some chicken into my broth, fixed my coffee, and went back to bed.
Eating something really helped minimize the pain and the rest of the day was pretty uneventful. I still rested a lot, watched TV, and took it easy. I consumed water, coffee, and broth with pureed meat in it. I did make some Liverwurst which was great since I couldn’t really chew anything and it was soft enough to just swallow. Bob came home later that afternoon and we spent the evening watching TV.
Sunday – 7/14 – Day 4: I woke up with a lot of pain again, trouble swallowing, and heart racing. I think the heart racing is due to low cortisol. I took Percocet and extra Tylenol as soon as I got up. That actually got me through the day as far as pain is concerned. Around 6 or 7 PM the pain got worse again and I also had pain radiating to my upper teeth. I took more pain killers and went to bed.
Monday – 7/15 – Day 5: This is the first day I woke up without actual pain, just some mild discomfort, and the heart racing wasn’t quite as bad either. I baked some almond butter cookies for Bob and put away a few clothes, but otherwise still rested most of the day. Still “eating” pureed meat or chicken in broth with some extra fat and drinking coffee (with coconut oil).
Around 7 PM, much like the night before, the pain was getting pretty intense again. It was also more intense again in my upper teeth vs the actual surgical sites. In addition, I was experiencing gallbladder pain. I took one Percocet around 7:30 PM but it didn’t help much. I added one Aleve and by 10 PM, when I went up to go to bed, the pain in my teeth/gums was still pretty intense, and so was the gallbladder pain, so I took another Percocet. As I was brushing my teeth, I noticed my tongue. I hadn’t really paid much attention to it but it had a nasty coating on it which I normally only get during some hard core fasting. Here’s a pic – gross!!
Today – 7/16 – Day 6: Woke up with mild to moderate pain in surgery sites and my upper teeth, headache, and heart racing. The latter was improved even more but still too high. However, unlike the other mornings it came down with my morning dose of hydrocortisone and without a beta blocker. The pain also lessened a bit after I had been up for a while and I did not feel the need to take a pain killer.
The gallbladder pain was gone when I woke up so I had my coffee blended with coconut oil and a couple of bites of the homemade liverwurst. Unfortunately that brought the gallbladder pain back. I took 2 capsules of ox bile (500 mg each) and did a coffee enema. That helped and I was feeling a bit better, except for the headache which is mild to moderate but relentless. I also sat in the sun for about 30 minutes which felt good.
I just tried chewing some boiled chicken breast but that was still too cumbersome and uncomfortable, so I blended it into broth and ate it slowly with a spoon. Drinking my coffee with coconut oil now and not sure if that will bring the gallbladder pain back. Normally, when I have gallbladder pain, I don’t eat anything that day even if the pain is mild. That usually gets rid of it. However, considering how much I am already detoxing, and given the low blood sugar issues on day two, I don’t think fasting is a good idea. Praying that the gallbladder pain will not return. I took another 1,000 mg of ox bile with lunch and hope that will help.
Given how I feel I probably won’t do much again today. I am trying to rest as much as possible to let these caviations heal properly. The only thing I am thinking about doing is going to the grocery store later, but I may even skip that as well.
Next step is getting the metal in my upper jaw removed and possibly cryotherapy in Germany to remove scar tissue from tonsillectomy. Dr. Foley already indicated that she might be able to remove the metal without replacing it with anything else. I believe getting these cavitations removed will have a huge positive impact on my overall health, and the same might be true for having the metal removed.