dream

I had a happy dream last night.

I was outside. I don't know what time it was -- dark enough to be able to see the stars, but light enough to see. All of the lights of the houses were out, and everything was quiet -- sleeping. I looked up, and saw three swallows flying together. Each swallow had the tail feathers of another swallow in its beak, so they were connected in a ring that was spinning as it moved. I felt happy and excited to see them. I ran along beneath the swallows, pointing up at them and calling out, just in case anyone could hear.

The dark lake

For some time now, I have been seeing the image of a dark lake in the back of my mind; a black lake, dark and smooth, against a backdrop of the images of my thoughts. It has been growing, sending out investigative arms, so that each time I picture it in my mind's eye, it is larger.

Tonight it occurred to me that its blackness didn't indicate presence (as of a fluid such a water or oil); rather, it indicates absence, the absence that is growing inside my mind; erasure.

Twisted spiral

I saw a thread with the same title on Ravelry just now. It seemed appropriate.

I just went out to put an envelope in the mailbox. I was greeted by my neighbor two doors down, who was sitting out on his front steps with his son and his father. I walked down to say hello. I noticed that the little boy, whom I last saw in a carriage, was walking and talking, and then the wife came out with another baby. The new baby was as big as the older son was the last time I saw him. Beautiful family -- healthy, smiling, and strong. Both the husband and the wife asked me how I had been, and commented that they hadn't seen me for a long time.

It made me realize that I have vanished -- fallen out of life. My time is not the time of healthy people. In one sense, it seems endless, interminable; but then, I'll have an experience like seeing my neighbors, and realize that more than a year has passed. I can't remember all the days that came in between seeing the two children, or even writing the posts I've posted here. I completely missed the wife's second pregnancy, and that must have lasted for 9 months. I have a vague picture of blue balloons attached to their front door, but was that for the first son or the second? It's like a dream.

My vista has narrowed to just trying to stay alive.

Bitter greens

Today for lunch I had three handfuls of raw cashews and a serving of arugula braised with garlic and beef broth. The arugula tasted good. About 15 minutes after eating I got very nauseous. I thought I might throw up -- very rare for me. Then I started to sweat, and get burning pains in my joints. The nausea passed fairly quickly, but more than 2 hours later I am still sweating like a pig.

This is my second big sweat of the day -- I had one this morning, a little while after I took my morning meds (Malarone and Tinidazole right now).

I wonder if bitter greens have benefical effects against tick-borne infections? According to this article, Japanese knotweed is a bitter green, but the part that is used as an herb is the root, I think.

I am noticing on this combination of meds that I have more energy. Yesterday I actually did a tiny bit of dusting, and I just finished a 36" x 48" afghan after only 2 weeks. And today, I did 2 loads of laundry. I still feel completely pithed -- devoid of personality and life -- but it's good to be able to do a little bit more.

Trying to be somewhere else 3

Another day. More diarrhea. My ninth year. The only days in that time that I have not had diarrhea were just after my cancer surgery, when I was given anticholinergic medications, and for a brief 5-week period right after I first started taking Malarone. Adding the Lyme meds back in started up the diarrhea again.

Today's happy memory: singing White Coral Bells with my mother in the backyard of our first house in Denver. I remember that it was a nice day, that we were sitting on the ground (maybe doing gardening?), and that she wasn't angry...a rarity in my childhood experience.

White coral bells
Upon a slender stalk
Lilies of the valley on my garden walk
Oh don't you wish
That you could hear them ring
That will happen only when the fairies sing

We sang it in a round (my first experience of that) and it was achingly pretty.

Trying to be somewhere else 2

A lot of inflammation, today. Pain in my hands, feet, hips, and jaw, and deep fatigue. I had a list of four things to do today, and I only did one.

Time for more memories...

I am hiking in the Columbia Gorge with my friend Colleen, in college. She showed me a place with a short hike to a beautiful pool. On the day we went, there was no one else there, and we took lunch. I remember walking through tall trees, and being aware of my total insignificance -- how unimportant I was in the scale of the gorge, or even of the oldest trees -- and feeling happy and at peace.

I loved those hills. The Elephant Hills -- that is how I used to think of them, because their skin and shapes reminded me of an elephant's.

Night walk

I went for a walk tonight. Even a year ago, this statement would have been commonplace, but since then I have hardly walked. On the combination of tinidazole and Malarone, I'm having less joint pain than I have in a long time, so tonight on the spur of the moment I decided to give it a try.

I took it very slowly, and only went to the end of the block and back. It was cool, cool enough for me to feel it through the sleeves of my fleece jacket, and the air smelled of wood smoke. On the way down, other people were coming and going on the street; a neighbor returning home with his date, a man leaving on a bicycle, someone dropping others off in a car. The crickets were chirping, stopping one by one as I walked by and restarting after I had passed. On the way back, it was just me and the crickets.

I felt a little bit unsteady without my walker, and my right arm went numb during the walk (I have been having neuropathy again since I took the medication break), but it felt good to be moving. I hope I will be able to do it again soon.

Trying to be somewhere else

Tonight I went searching in my mind for somewhere else to be. This has been an intolerable summer -- getting fired by Dr. L in May, being diagnosed with C. difficile in June, clearing the infection with extremely high doses of probiotics only to be diagnosed with two other infections in July. For those I caved and took antibiotics, which plunged me back into severe diarrhea that resisted even the high-dose probiotics, and...I broke. I stopped taking the Malarone and the Tinidazole and the Artemisinin and the antifungals and all my supplements, and I started thinking about ways to die.

This week, I realized that I can't kill myself. It goes against my nature. It was a blow...I always thought that if this got bad enough I could end myself, but I can't. I can't even feel angry at the pathogens -- they are just doing what they do, trying to survive and reproduce like everything else. I do feel like a prisoner in my house; I do feel a terrible anger at the politics of Lyme, which leave patients trapped in this quicksand, losing function, ability to work, respect, even connections to their friends and communities, while the two Lyme political factions argue about which is righter. So, I'm trapped here in this hell, and to escape I went searching in my mind for a time when I was happy.

The memory that came up was of a lovely day in summer. Mom's studio addition had been finished, and I was lying on my stomach in the grass outside its sliding glass door, watching the ants. I remember that I would put my face right down into the grass, as close to the ants as I could get, so I could see the grass from their perspective -- giant curving green spears. I watched the ants going about their business; sometimes one would crawl onto me instead. Around the bases of the grass blades was dry vegetable matter from last season's lawn, pale and sweet smelling. The day was warm, but not too hot, and I could feel the tips of the grass blades poking my stomach through my shirt. I don't remember any sounds but the rustling of the grass. I felt happy.

Memory excursions. Another one: running in Wisconsin in the evening, in my extra-warm insulated tights, listening to a recording of Bridget Jones's Diary. The book was so funny that I'd laugh out loud, stop and hold my sides and laugh, then run on. -- Or -- the starling stagings at the season-changing times, where suddenly out of nowhere, you could see hundreds, maybe thousands, of starlings taking off all at once, then forming a hologram of flight in the air -- a shape like a water balloon, turning and squeezing, drawing itself out and collapsing again, but always controlled by the speed of the birds and their proximity to each other.

Maybe this is how I can get through the time till I can see Dr. J in November. Just to be somewhere else in my head, somewhere that I was happy. Right now I would like to go back to that grassy lawn, and lie there all night watching the ants.

Prison bricks

A cricket was trapped in the wall tonight, in one of the little spaces between my house and the house next door. It was valiantly rubbing its wings together all evening, putting out the call for a mate even though it was trapped where I couldn't see it.

Laughter

My laughter has come back since I started using the progesterone. From-the-belly, laugh-out-loud laughter. I’m loving it.

Progesterone

I have now taken the two 50-mL doses of progesterone (Thursday and Friday nights) and one 100-mL dose (last night).

The progesterone definitely seems to be helping me. Prior to starting it, I had been taking small doses of Xanax (0.25 mg at a time) for symptom relief during the mid-cycle mood swings. Recently my nervous system has been on constant full alert, and my doctor had me increase the frequency of my Xanax dose to help me function. On Friday evening, I realized that I had completely forgotten to take any Xanax. The feeling of being on Red Alert was gone, my mood was lighter, and I was relaxed and smiling. This continued throughout the day yesterday. I actually got sleepy in the evening before taking my sleeping pill, something that has not happened for years, and I slept more deeply.

Yesterday I also noticed that my heart was no longer racing. When I took my pulse, my resting heart rate was down to 72. It has been in the mid-90's for the past several months.

This was all truly wonderful. The only negative was that my vaginal yeast infection (chronic on my Lyme meds, but controlled for the past few months) flared up again after the first progesterone dose.

Last night I used the first 100-mL dose of progesterone. This dose of progesterone is definitely too high.

I took my sleeping pill at 11:00 PM, and applied the progesterone cream to my left arm at 11:30. Whereas the previous two nights I was asleep by about 12:15, last night the feeling of being on Red Alert came back in full force, with anxiety and muscle spasms that started at about midnight. I was wide awake at 2:00 AM, and had to take 0.25 mg Xanax in order to get to sleep. Still, I was up till after 2:30 AM. This morning I woke up feeling drugged and foggy, and my heart rate upon waking was 89.

My conclusion from this is that the progesterone is working, but that the positive effects seem to be reversed at the higher dose. This seems counterintuitive, but I did not change the doses of any of my other medications or supplements during the past three days, so I can't ascribe the reversal to anything else.

I am doing to drop back down to the 50-mL dose and, if the initial positive response returns, I will stay on that dose for the rest of this cycle. The Red Alert feeling is not subtle, and I figure I can always add a few mLs of extra cream in a morning dose if needed.

What I have learned from this experience:

1. I may be related to Goldilocks.
2. Hormones affect a lot of processes in the human body, and small dose changes can make a BIG difference.

Insane Zombie Golem Revealed to be Powered by Hormones!

It has been occurring to me lately that this blog is pretty grim. If you're following it, I'm sorry about that. There are things in my life that are good, the best one being my canary, Lofty, who is singing as I type. He has made me a member of his flock. Having him living here with me brings me a great deal of joy.

Now, on to today's story.

I started BHRT 5 days ago. I was concerned about starting on estrogen right away -- my estrogen is indeed extremely low, but my progesterone is even lower, so I’m also extremely estrogen dominant. But my pharmacist wanted to stick as closely as possible to a natural schedule, so I agreed.

Turns out that my fears were well-founded. Even though my internist increased my dose of sleeping medication by 50% last week to try to get me out of the exhaustion trough I’ve been stuck in, with each passing day of estrogen it has had less and less effect. I got 9 hours of sleep the first night (blissful), then 8 1/2 the next night, then 8, then 7 1/2, then 7. I’ve been waking up with the sleeping meds still active, totally wired and unable to go back to sleep, and staggering around like a zombie. As long as the sleeping pill is still working, I have no short term memory at all, so it has made for some interesting situations. By the way, it still hurts to breathe all the time, so the combo has been extra delightful.

Yesterday I had a full-blown meltdown with huge anxiety and sobbing that required more Xanax. I realized that if this was happening on day 5 of my cycle, my mid-cycle mood swing this month might be a serious problem. I called the pharmacist today and told her what had happened, and she took me off the estrogen right away. She’s also going to start me on progesterone 2 days earlier than she had originally planned -- I explained the pattern of my mood swings again, and she agreed that it wouldn’t help a day 12 mood swing to start progesterone that evening. We’re going to try adding the estrogen back in next cycle, but at a lower dose.

So -- if I have seemed flaky, cranky, psychotic, large and green, or otherwise not myself, please hang in there for a couple more days till I can start progesterone.

Hitting bottom

A thing happened. I have been processing it, but I think I’m ready to share.

One of my Lyme symptoms is air hunger. Until Monday 4/11, it was intermittent and only with exertion. The exertion didn’t have to be large -- I’d get it if I climbed the stairs from my main floor to my second floor -- but sitting or lying down always made breathing easier again within a few minutes. It has become more noticeable since I went off Lyme antibiotics in January. On Monday, though, the air hunger became constant, and since then every breath has hurt.

On Thursday, I decided that I should call my Lyme doctor, as she only works M-Th. She said that it was very probably either an exacerbation of the Lyme (since we are only treating the Babesia right now) or a rare but known side effect of the Malarone, but there was a tiny chance that it was a pulmonary embolism and I should go to the ER and get it checked out. I told her that I would seriously rather die than go to the ER ever again on my own with a Lyme-related complaint, but that I would call my GP and see if she would meet me there.

My GP agreed that I should not go to the ER. Since I am allergic to IV contrast, she ordered a stat venous perfusion study of my lungs to rule out pulmonary embolism. The only catch was that her hospital is the one at which, the one time I went there seriously ill at the request of a physician, they tried to have me committed. I planned to follow the protocol my therapist and I arranged after that incident, which was to call her on her cell phone so she could come and assist me if necessary. I took Xanax as soon as I got in the cab, but realized halfway to the hospital that I had left my wallet containing my insurance cards, money, and therapist’s number at home. (The number is now in my cell phone.)

My GP met me at the entrance of the physicians’ building with a wheelchair, made copies of the insurance information which she had on file, checked my O2 saturation, and called my therapist (they are friends). Then she wheeled me over to the hospital and got me admitted immediately. She told the admissions person that I had had a very bad experience at that hospital and that no test or treatment was to be given outside of her orders. She stayed for the mandatory chest x-ray, then left me to attend to another emergency patient with a promise to return to get the scan read and take me back.

I was so terrified of being there, even with Xanax on board, but the people who did the test were nice and I got through it. My doctor did come back to get me, and she drew labs to check my SED rate and CRP and electrolytes plus other basic stuff. My inflammatory markers are up again. The VP scan was normal, and my O2 saturation was 99, which ruled out airway issues or emboli. Unfortunately, that hasn’t made it any easier to breathe.

My GP increased my sleeping medication, and Thursday night I was able to sleep for almost 9 hours, which got me from Zombie to just severely exhausted. What is hitting me really hard, though, is that this means that the Lyme is definitely back, and I am not physically strong enough anymore to withstand treating both infections at once. My Bartonella has flared back up again too, and the thrush infection isn’t responding to antifungals.

The current thinking about the constant air hunger is that it was exacerbated by the physiological stress of the painful ultrasound on Monday, and that the chest pain is costochondritis. The pain is on both sides of my upper sternum, about 2 ribs down from the top, just where the ribs and the sternum meet. Air hunger in diseases like Lyme and CFS is thought by some researchers to be caused by nitric oxide induced mitochondrial dysfunction, so I tried to read up on that a little bit over the weekend, but I was too tired for it to sink in. Hopefully soon I'll be able to return to it with a clearer head.

Sinking

Things have been bad.

2 weeks after the adverse reaction to Omnicef, I'm still having diarrhea every day. It's better than it was at the beginning -- I was able to go off Lotronex again after about a week -- but I'm still having a very hard time figuring out what is safe to eat. Basically, nothing is. My whole gut is exquisitely tender, and I have been reacting even to foods that are normally safe for me.

I've also been having more trouble sleeping since Dr. L increased my Malarone dose last month. I'm not sure if it's a die-off reaction, or a change in my rate of liver metabolism, or both, but my reliable sleeping pill (Ambien CR) has suddenly become less effective. I have had the same experience with other medications, and the Ambien started working perfectly again when I finished the other meds, so I suspect the Malarone. The issue this time, though, is that I won't be going off the Malarone for some time. In fact, Dr. L has given me a small dose of Mepron to supplement it with, so if anything I expect the sleep problems to get worse. She also doubled my artemisinin and added oregano oil to my regimen since the thrush infection isn't responding well to the Nystatin.

I'm not due to start the Mepron for another 10 days, but with the artemisinin and oregano oil my sleep has already gotten worse again. I was getting 6 1/2 - 7 hours a night before the changes, and last night I got 4. Adjusting my Ambien dose does help; I have been cutting my pills in half so I can take a piece each time I wake up, and two nights ago I took an extra half a pill when I woke for the third time. It's just worrying to need that much medication to sleep. I can't do this on a regular basis without running short of medication, so I called Dr. K to ask about increasing my Ambien dose.

from 4/7: I hit an all-time mobility low today. Around noon, I went outside to put a letter in the mailbox and saw one of my favorite neighbors down at the other end of the block. I walked down there to say hello. I chatted for less than 5 minutes, then walked back. By the time I got home, I was breathless, and by 2:00 this afternoon, I could no longer keep sitting up in my desk chair and had to lie down. I just keep feeling more and more exhausted, and I can’t go to sleep. (Note: I'm having air hunger and chest pain more frequently and with less exertion.)

On 4/10, I typed up Michelle's notes from the 4/5 appointment with Dr. L. The right side of my face suddenly went numb, and I had bad paresthesias in my neck and back at the same time.

On 4/11, I doubled my artemisinin dose after checking with Dr. L. She also instructed me to take it between meals. (Before, she had had me taking it with the Malarone.)

On 4/12, my eyes were going in and out of focus all day; feeling really ill, with severe nausea, gut pain, and heartburn all day. I had an adverse reaction to my morning nut muffin (home-made, no change in recipe or ingredients).

On 4/13, my helper took me to buy some oil of oregano liquid. The one I decided to try is Now Foods Oil of Oregano Blend. I chose it because it didn't appear to contain any alcohol and was recommended by several of my friends with experience in herbal medicine. I chose liquid over capsules because I could titrate it more slowly and because I could hold it in my mouth before swallowing (Nystatin tablets don't treat oral thrush). Note: not miscible in water; taking in oil is better. Took second dose in 1 tsp of cod liver oil.

On 4/14, I started BHRT. Bi-est 1 mg, days 1-12, and Progesterone 100 mg, days 12-24.

My cognitive problems have also gotten worse. I'm having trouble with word finding, skipping chunks of text when I read without realizing it, typing letters that aren't the ones I intend.

I'm not sure what to do. I don't think I have ever felt so sick. At the same time, all the Lyme symptoms are returning. Very discouraging, since I know I absolutely couldn't tolerate an additional antibiotic right now.

more about teeth

I wanted to put this in before I forgot (again). I haven't been keeping track of my tooth pain in relation to the medications I'm taking for Lyme & co. I think the pain started again when I stopped the Lyme abx to start the Babesia treatment. Not sure which antibiotic or combination helped with it, though.

Omnicef

Yesterday, I finally started taking the Omnicef the Lyme doctor gave me to try for my tooth pain. I took a half dose to see how I’d do with it. My GI transit time speeded up, but it seemed tolerable. Today I took the full dose for the first time. Within an hour, I was having explosive liquid diarrhea for the first time in months. I've been having regular bouts since then.

I don’t want to have to pick between having teeth and having a functioning digestive system.

Sad.

Magnesium experiment

hypothesis: no magnesium supplement --> palinopsia (P)

questions:
Does supplementing magnesium resolve the palinopsia?
If so, how much supplemental magnesium is required?

tests:

1. 3/19: Peter Gillam's Natural Calm, 400 mg at bedtime --> no P, but gas
   
2. 3/20: Bluebonnet magnesium glycinate, 200 mg at breakfast and bedtime --> no P, but gas and diarrhea
3. 3/21: Bluebonnet magnesium glycinate, 200 mg at breakfast only --> P
4. 3/22: Natural Calm, 200 mg at breakfast only --> P. Okay, so 200 mg per day is not enough.
   
   UPDATE
   
5. 3/23: Natural Calm, 200 mg at breakfast and bedtime --> P??? Huh. That shot my hypothesis all to hell.
   
   Hmm -- maybe not. I looked it up, and magnesium is subject to stress depletion. I think having to call the police four times on the same day qualifies as stress.
   
   
6. 3/24: Natural Calm, 400 mg at bedtime --> P
7. 3/25: Natural Calm, 600 mg over course of day --> very mild P upon waking that resolved with 10 minutes of sitting on edge of bed
8. 3/26: Natural Calm, 200 mg at breakfast and bedtime --> no P.

So, the verdict seems to be that 200 mg magnesium BID is required for maintenance, with an increase to >600 in times of severe stress. Stress --> increase in muscle spasm, so that will be the indicator.

Next thing -- starting Omnicef on 3/27.

Hormone test is on its way

FedEx picked up the saliva hormone test today. It should arrive at the lab on Wednesday. Now I just have to decide whether to start the progesterone cream tomorrow (day 6 of my current cycle) or to wait until I get the test results.

Saturday

I was able to go back on the Nystatin on Wednesday. The palinopsia didn't stop, and the pharmacist agreed that 48 hours should be more than enough time for the Nystatin to be out of my system (with the tablets, almost none of the drug is absorbed through the gut).


Looking back through my posts, I see that I never posted an update after my 3/8/11 appointment with Dr. L. Here's a summary.

My calcium was high on my last set of tests. She asked me if this was normal for me, and I said no. She told me to stop my cal/mag supplement and add a plain magnesium supplement 250 mg daily.

My TSH was almost nonexistent -- below 0.01. She asked me if my TSH was historically low, and I said yes. She wants to see a copy of my thyroid chart next time -- have printed one out to take to her and put it in her folder. We also talked briefly about my T3:T4 ratio, which has gone from 1:250 to 1:2. She asked if my internist is taking care of my thyroid, and I said yes. (Hoping this is true -- I'm concerned because I never got a response to the email I sent to Dr. K with the new ratio, and she has kept my dose of thyroid meds the same. I had forgotten about this before. It seems to be a developing trend, which isn't good.)

My IgM antibody levels were very low. Selective IgM deficiency? She wants to retest at some point.

We talked about the nausea, heartburn, increased fatigue, and loss of appetite I had been having since increasing the Malarone, and the extreme reaction I had when I went back on the artemisinin after my week off last month. She said all the side effects were normal for Malarone except for the loss of appetite. She mentioned the Cowden protocol to me, and we talked about what herbs I had taken on the Buhner protocol. I couldn't remember what I had read about Cowden, so I promised to look into it (more below).

Dr. L was very excited to hear about the possibility of IVIG, which the neuro-ophthalmologist had suggested for my vision loss. She said that while it's almost impossible to get for Lyme patients, it tends to work very well. She strongly encouraged me to give it a try if it's offered.

When she examined me at the end of the visit, she found that I had a thrush infection. She prescribed Nystatin for this. She told me that Nystatin would only work for yeast that was in the GI tract, so I asked her if there was something else that would work for vaginal yeast. She said she had a supplement called Candicid Forte, so I bought a bottle to try. She also gave me a prescription for Omnicef to try for the tooth pain.

summary of changes to medications and supplements:
stop calcium
add magnesium supplement
Artemisinin -- keep dosing the same (100 mg BID, 3 weeks on, 1 week off)
Candicid Forte -- start with 1 capsule TID, increase to 2 capsules TID if no reaction
Malarone 250/100 mg -- max is 3 tablets BID; try to keep dose the same; drop if side effects get too bad
Omnicef 300 mg -- start with 1 pill BID, increase to 1 pills BID if no reaction
Nystatin -- 1 pill TID


The only thing I haven't done so far is to start the Omnicef. I'm afraid to start the Omnicef when I already have a Candida infection. Dr. L had already decided to put me on Omnicef when she found the Candida in my mouth, and I forgot to ask her if I should hold off.

I'm careful to add new meds, herbs, and supplements one at a time these days because I have had so many adverse reactions. I tried the Candicid Forte first, the day after my appointment with Dr. L. It tasted delicious (the oregano oil), but I had an adverse reaction after the second capsule -- my rate of extra heartbeats noticeably increased, and I felt dizzy and ill -- so I didn't take any more.

After a rest day, I started the Nystatin, and that night I had my first episode of palinopsia. Working out what to do about that took me until Wednesday. On Thursday I took 410 mg of magnesium in the form of Natural Calm. I took 1 teaspoon at first (205 mg), and it helped so much to reduce my pain that I took another teaspoon before bed. I slept better than I had in weeks, and coincidentally, I also had no palinopsia that night. The Natural Calm formulation gives me gas, so I'm now experimenting to see if Bluebonnet magnesium glycinate capsules will also work to resolve the palinopsia. So far, the palinopsia has been reduced but is still present after taking 200 mg BID of the magnesium chelate, and my gut isn't loving it at this dose. I'm giving it one more day before I return to the Natural Calms.


Research on the Cowden Protocol
Here is what I have found so far.
Cowden's protocol uses proprietary (and very expensive) herbs and minerals manufactured by NutraMedix. The NutraMedix website has the following explanation of why no information is provided about the functions of the herbs:

In the United States, our products are sold as nutritional supplements; therefore, the FDA does not allow us to discuss the medicinal benefits of any of our products. We can only recommend that you perform an internet search for the information you are looking for. We are also prohibited from directing you to a specific website that may contain information about the medicinal benefits of our products.

Fair enough, but they don't even provide the species of the herbs used in their extracts and capsules. I have learned enough in the past year to know that in herbal medicine, species of herbs within the same genus can have different effects.

Dr. William Lee Cowden has written, co-authored, or contributed to 6 books, including alternative medicine guides to longevity and cancer. His last appearance in print, as a contributor to the book Insights into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share their Healing Strategies, seems to have been in 2009. When I checked last year, the book wasn't yet available in our public library system; it is now, so I requested a copy through interlibrary loan.

I was unable to find any pertinent research papers authored or co-authored by Cowden WL, Cowden W, or Cowden L in a Medline search. Of the 8 available search results, there were two papers about autoimmune diabetes, one about autoimmune CNS inflammation, one about anticoagulants, one about a specialized type of cranial surgery, one about low oxygen saturation tolerance, one about suicide attempts, and one about physiological response to ethanol among the Tarahumara Indians of Mexico, none more recent than 2003.

My conclusion thus far is that, while Dr. Cowden's training and experience suggest that he might be capable of putting together a good Lyme treatment program, there's not a lot of evidence so far to suggest that his protocol with NutraMedix supplements would work any better than the Buhner protocol I tried last year. I'll post again with an update after I read his section of Insights into Lyme Disease Treatment.

Hiatus

Temporarily (I hope) off the Nystatin to try to isolate what might be causing the palinopsia. Last night I had it anyway. I'm waiting one more night to confirm before restarting Nystatin. I thought two days would be a sufficient test period since Nystatin is very poorly absorbed through the GI tract. I checked with the pharmacist, and he agreed.

According to Dr. L, if the palinopsia is happening even without the Nystatin, the likeliest culprit is Malarone, and it's just a coincidence that the Nystatin and the palinopsia started on the same day.

Off the Nystatin, I'm feeling worse again. I haven't written this here before, but I've been having days lately where I think of my body like those of salmon after spawning -- literally disintegrating while I'm still alive. I feel deeply ill and exhausted.

P is for Palinopsia

A man and a woman are sent to infiltrate the special training school. They are chosen because they look convincingly like a couple. The school is far off the main road, on undeveloped land. They bring a sleeping bag and warm camping clothes, and camp together nearby the night before. In the morning, they find the school -- a big multistory warehouse of a building with nothing to identify it -- and walk through it, visiting all the floors. One floor has giant chimeric animals that don't look like anything they've seen before. Another has what look like interactive exhibits of art and design, except that when the woman tries to interact with the exhibits she receives varying degrees of electric shock or unexpected injections of neurotransmitters. The man and the woman talk to several students, who seem human but look slightly off (faces oddly blurred and swollen, with distorted features); the students all deny the existence of the school even though they and the man and woman are inside; the students are all extremely polite and dressed in school uniforms. Finally the man and woman decide that they have gathered as much information as they can and that it is time to leave. They are alert to the possibility of attack when they get into the school yard, but nothing happens until they approach their truck, which is parked in a narrow entryway. Then, suddenly, several students surround them. The man, captured and hurt, calls to the woman to run, but as she does she turns to look back at him and everything goes dark.

When she wakes up, she is in some kind of nourishment hide -- a simple wooden 3-sided, roofed structure that provides transdermal nutrients to whomever sits inside. She has a feeling of relaxed well-being and satiety. The floor of the hide is lined with clean fresh straw, and the day is sunny and warm. She looks out of the open side of the hide, and sees the human-looking students walking in small groups. It's a sunny day, possibly not the same day on which she was captured. She gets up and follows the students through the packed earth streets until she realizes they're heading back toward the school. As they approach the undeveloped fields, she can see the chimeric animals in the distance, and feels afraid to see them untethered. She asks a student why they are there, and the student says "for practice".

It becomes clear that the school is a training school for special combat forces. The students are conscripts who have been caught as she and the man were and given varieties of treatments to make them more compliant. During the week, they learn the tradecraft of becoming assassins, and on the weekends they supposedly have "furlough time" to enjoy the street fair in the local town. However, what actually happens is that the weekends are the chimeras' time for tradecraft, and the students are their targets. Managing to make it back to the school on time for the evening roll call on Sunday assures you a place for the following week; being late means that you're trapped between the outer perimeter of the undeveloped fields and the inner perimeter of the school doors, with all the animals that were on exhibit inside the school. It's a free-for-all, and the goal is to survive until the next weekend. The woman realizes immediately that she will need to try, not to return to the school, but to escape the training grounds, but she has no weapons or food.

I woke up from this dream last night, feeling not right somehow. My mind felt heavy, and I had trouble coming fully awake or figuring out how to sit up. When I finally did, my brain’s image refresh rate went crazy. When I moved my hand in front of my face, instead of my brain compensating for the movement and showing me one hand that fluidly moved across my field of vision, I saw hundreds of hands all fractionally overlapping each other -- just like what happens on your computer screen when the processing speed slows way down before a crash. The same thing happened with stationary objects as I moved through the room. There was no distortion of color or shape -- I saw things as they were, just in overlapping multiple images. What I mean to say is, I didn't see anything that wasn't there.

It was not fun navigating to the bathroom, and it lasted until I fell asleep again, which took about an hour. Apparently I managed to walk over to my computer and write down my dream, because when I woke up later, there was the computer file with a time stamp of 05:16:01.

This episode seemed to be related to the fact that I started taking Nystatin yesterday for a thrush infection. I didn't have problems when I took the daytime doses, only after the evening one, so I suspected a drug interaction with my night-time meds. I never had a reaction like this with my night-time meds before adding Nystatin. It didn’t recur again today when I took the morning dose, although I still feel logy from last night. I called the pharmacist and gave him a list of all the meds I take at bedtime, and he looked them up for me and said there are no known interactions with Nystatin. Dr. L isn’t in the office on Friday, so I couldn’t call and ask her. I left messages for my therapist and internist to see if they had any suggestions.

My therapist speculated that it might be a combination of the Malarone and the Nystatin, made worse at night because of the change in neurotransmitter processing during sleep. We had talked about the possibility of Malarone hallucinations before -- I guess some people get them, but I never did until now. She reassured me that, if it’s a Malarone side effect, it’s not dangerous or damaging -- just potentially frightening if one is not forewarned. Now I am, so hopefully if it happens again it won’t be so freaky. It's funny how much of a difference there can be between reading about an experience and having it oneself.

I read through the side effects listed for Malarone on the drugs.com website again tonight. They include the following CNS side effects: headache, anorexia, dizziness, abnormal dreams, insomnia (5% or more); psychotic events (eg, hallucinations), and seizures. I think it's safe to say I'm having abnormal dreams, and I have been having problems with my appetite as well. My insomnia got worse when I increased my Malarone dose; since then I have been cutting my sleeping pill in half so I can take the second half when I wake up in the middle of the night, since I can no longer get back to sleep on my own.

One question that keeps nagging at me is how the Nystatin could be interacting with the Malarone (or any of my other meds, for that matter) when it's supposedly not absorbed from the GI tract. I guess the answer could be that, at least in my case, it is. But how? Interactions within the GI tract itself that propagate elsewhere in the body? Leaky gut? Compromised blood brain barrier?

Sometimes I just wish I could understand better. It's easier for me to accept that way.

Artemisinin's revenge

All I can think is: OMG, so nauseous.

I started my second cycle of artemisinin today since transferring my Lyme care to Dr. L. I had been taking it 5 days on, then 2 days off, but she switched me to a 3 weeks on, 1 week off schedule. Today was my first day back on.

I'm having nausea that makes all the other nausea I've been having seem trivial. I have also, so far, had 5 hours of rapid-cycling sweats since I took my morning dose. It was so bad that I had to cut short a conversation with a friend because I couldn't concentrate on what she was saying.

I'm trying to remind myself that this is a good thing because it means bacteria are dying, but boy it's tough.

Rip Van Winkle hits the snooze button

I seem to have backslid since getting the flu.

It’s over now -- the flu, I mean -- but I have a much lower level of energy than I did before I got it.

I realized this morning that I have been telling myself each day that I don’t know why I’m so tired.

I have been too tired to knit since Sunday.

I just had breakfast, and it’s 12:40. I deferred breakfast so I could wash my hair, which hadn’t happened for over a week. (I have been having soaks in the tub every night before bed, so the rest of me was pretty clean.)

Last night it took me 2 1/2 hours to make and eat dinner. I cooked a lamb chop, sat down to eat it and rest; braised some collards, sat down to eat them and rest; rested some more; had some chocolate; and braised and ate some celeriac.

I’m still getting things done, but I just feel…so…tired. It’s causing me some grief. I know that will pass, but today it is here.

Uncomfortably numb

I'm not always aware of when I'm in physical pain, or how much pain I'm in. I have had daily pain for many years, and I have learned to dissociate from it so that I'm not forced to deal with it on a constant basis. That's helpful in some ways, but the flip side is that it can be difficult for me to be present with the pain when I need to, for example in order to quantify my pain level for a doctor. I can also find myself unexpectedly tired, or sad, or just vacant, and not realize why until later. Today I found myself with tears running down my cheeks as I sat waiting for a CT scan; at the time, I thought it was just because I was so tired, but later I realized that I hadn't been able to get comfortable in my chair, and I had been rubbing my fingers, elbows, shoulders, and neck because the joints hurt so much.

Based on the number of times this kind of thing has happened in the past few weeks, I think my pain level has been pretty bad. I know I mentioned spinal pain to my doctor when I saw her on 2/17; it has to be bad enough that I can't tune it out in order for me to mention it to a doctor anymore. I know I have been taking more hot baths to help me sleep, and spending more time with the heating pad on my back.

It's not the first time I have had this revelation, but I think it might be the first time since I started keeping this blog. No need to reinvent the wheel next time, now.

finally

After two shipping errors and multiple phone calls, I finally started the hormone test this morning. It took 3 calls to the testing lab and 3 calls to FedEx to get an actual test kit delivered to my house. The first kit was sent regular mail instead of overnight, even though the lab told my doctor they would overnight it directly to me. That kit has still not arrived. When I hadn't received it after two days, I called the lab, found the shipping error, and paid for a second kit to be overnighted to me. The company managed to ship that one off correctly, but FedEx failed to deliver it the next day. I called FedEx and explained to the customer service rep that the package contained a medical test, and that if I didn't have it by this morning I would have to wait a whole month before I could do the test. Her response was "Too bad, it will get there by 3PM." She also wouldn't assist me in getting a refund for the charge I had paid for the overnight shipping -- I had to call the lab back for that. A friend suggested that I call back FedEx and ask to speak to a supervisor, so I did that, with the polite but firm approach that I would keep going up the chain until I found someone who knew how to get the package to me first thing this morning. The supervisor I spoke to said she'd put in a request for expedited AM delivery, but apparently no one read it, because when I called again this morning the notes were in the computer but the package had been sent out for 3PM delivery. I spoke to a second supervisor, who actually called the driver and had it added to the AM delivery, and I got it at 10:15.

I'm telling myself that the timing was actually not too bad, since I usually wake up between 9:30 and 11:30, and I was able to do today's test at 10:30. I didn't know to take my temperature before getting out of bed, though, because the test instructions were not available online. I'm hoping that it won't matter for the first day. The instructions for collecting the saliva also weren't completely clear, so I'm going to call my aunt and ask her how she has done it in the past.

I am having a lot of anger and anxiety about this test. I can't believe that it took me 4 doctors and 6 months to find someone willing to order it for me -- even though all 4 doctors readily agreed that a hormone imbalance could be causing my mood swings. I can't believe that I had to go through several months of mood swings while I searched for someone who would order the test. I can't believe all the bullshit I had to go through just to get the test to my house. I also still don't know if the test will be covered by Medicare (although the diagnosis code was included in the test kit, so I can now find out). Fortunately, the doctor who ordered the test for me -- my new GP -- seems interested and willing to help, so hopefully it won't be this difficult every time. It has been extremely hard on me, and used a lot of energy that I didn't have to spare. Other things have not gotten done this week because of it. And now, I can't settle, even though I am exhausted from stress and insufficient sleep.

My GP did give me a talking-to yesterday about not waiting so long to take Xanax when I have the mid-cycle mood swings. I told her it sometimes took me a long time to figure out what was going on, and she said that if I was crying uncontrollably for no apparent reason and it went on longer than an hour, I should take Xanax, period. No need to figure out what was going on first. Sensible suggestion. I hope it makes equal sense when my brain is addled by hormones.

Erosion

I came to a realization today that I’m kind of struggling with. Here it is: I can no longer clean the whole bathroom in one go.

Before I got sick, I used to clean my whole house at once. Then, I cleaned half at a time, then a room at a time. Now, it seems that I can’t clean a whole room. Cleaning out the bathtub and sink left me shaking and in pain. The floor, shower, and toilet are untouched.

I will readjust -- have already written myself a big note on my white board in red dry-erase marker to help me remember -- but for now I am feeling some grief.

nighttime revelations

I just gave up my evening T'ai Chi routine in favor of a bath for the second time this week, then spot-cleaned the bathtub with tissues because I was hurting and desperate for a hot bath and couldn't face the additional pain of going over the whole thing with spray cleaner. This, of course, means that I may actually be dirtier when I get out than when I got in. There are aspects to this illness that I never could have imagined. When I was well, there were certain chores I just always did no matter what, and keeping the tub clean was one of them.

This brought me to the realization that I have been having more pain lately that I can't ignore or tune out. I have gotten pretty good at tuning it out, so that means my pain level is probably 5-6. Raising the dose of Malarone has also caused a recurrence of some of the high-dose antibiotic side effects I was having earlier -- trouble sleeping, nausea, fatigue, and loss of appetite. Oh, and flank pain -- that's back too. I have been drinking a lot of ginger tea, which helps some with the nausea, but I don't think I have managed to eat a proper lunch this week, just little snacks of handfuls of nuts. That still gives me a decent number of calories, so I will just accept it for now. I think, though, that until the pain improves I need to focus on doing pain-causing chores earlier in the day -- cleaning the tub, unloading the dishwasher (it has been sitting full of clean dishes for 2 days, because when I think of it in the evening I'm always hurting a lot), taking out the garbage. Anything requiring lifting, bending, or extension. Also, not to try to do a bunch of these things in a row to get them out of the way, since that causes flares. I'm hoping I'll remember this. If you read it, feel free to remind me.

On Monday, I went to see a new LLMD. I will call her Dr. L.

I was impressed. My friend Michelle, who went with me, was too. Dr. L actually referred to the information I brought her multiple times (catch me before I hit the floor!), and she really seems to know her shit when it comes to Lyme and its coinfections. Here are the highlights:

• She said I need to be taking more Malarone. She upped my dose from 500 mg BID to 7500 mg BID. She also changed my artemisinin dosing schedule from 100 mg BID, 5 days per week, to 100 mg BID, 3 weeks on and 1 week off.
  

• She confirmed that I will have to repeat the Lyme treatment once we have dealt with the Babesia.

• She listened to my description of the new dental pain and recurring tooth pain. She said she was the first patient she had seen with Lyme-related dental issues, but said she would do some reading and see if she could find something that might help.

• She said that, in her experience, doxycycline doesn't lower Malarone levels. How did she find out? By testing patients until she was convinced. I liked that a lot.

• She also said that it was fine to take CoQ10 with Malarone. She said that even the man who did the original research had recanted. She confirmed it for herself, again by testing patients on Mepron or Malarone with and without CoQ10.

• She agreed that I should get my hormones tested and gave me the name of the lab she uses. She offered to order the tests herself, but she just moved offices and didn't know where her box of stuff from the lab was, so I said I'd have my internist do it. This is encouraging, though, because it means that she has experience interpreting saliva tests, which my internist doesn't. She asked me to bring her a copy of the results. You bet!

At the end, she told me that I was a complicated patient. I acknowledged it, and then asked her politely if, now that it had been said and acknowledged, she could please never say that again. She said okay.

Once again, I am cautiously optimistic. Everything seemed good until the "you're complicated" remark. I get nervous when doctors tell me I'm complicated because it can mean so many different things, from "wow, you have the medical history from hell" (yep) to "you are going to be a huge pain in my ass" (run away!). I did make sure to ask directly if she was willing to take me on, and she said yes. I really, really like it that she tests hypotheses for herself, and follows the evidence rather than the accepted dogma if the two don't agree. I definitely feel like I'm in better hands with her than with Dr. M, so I wrote Dr. M a goodbye letter yesterday.

not my favorite week

I just got back from my appointment with gynecologist #3. She said she had never heard of someone having mid-cycle mood swings for only one day, and wanted to know why I couldn’t just take an SSRI for one day. Even if I could tolerate SSRIs, which I can’t, I don’t think they work on a PRN basis, do they? Then she suggested a sedative, but I stuck up for myself and told her that the Xanax I was already taking wasn’t enough to stop the crying jags, the urge to spend money, or the suicidal thoughts I have on those days. Eventually she said she’d be willing to prescribe bioidentical progesterone cream, although she wasn’t sure it would work. However, she would not, no way, check my hormone levels, even though she wasn't sure how much cream to tell me to use. I asked her why -- sticking up for myself again -- and she said it would be too hard to catch the hormone fluctuation, since it happens in one day. Well, not really, doc -- I just wait till the day I have the crazy and go to the lab with the nice slip you've written out for me… She said she’d check it if the progesterone cream didn’t work. Great, but then you won’t have a BASELINE! She didn’t even look at the 4-page questionnaire she had asked me to fill out and bring to my appointment, so she didn’t see any of the other stuff (like the 7-10 day super-heavy periods). She smiled and said brightly that we could do our follow-up by phone. At that point I gave up and tuned out. No point in being present if she wasn’t.

As you can see, this left me muttering to myself, and typing in italics. Feh. It also wore me out enough that I needed a nap. The thing is...it really seems to me that it might help to get a baseline to learn which hormones might need to be adjusted and how much. I know that if I use progesterone cream and then get tested, it could bias the results. I thought about it all day, and ended up deciding with gritted teeth to hold off on the progesterone cream this month. This leaves me with Xanax to manage the next mood swing, which is less than ideal. I emailed my internist to ask if she'd be willing to check my hormone levels for me before I go looking for gynecologist #4.

No new ideas

I called the Lyme doctor's office, and she called me back between appointments. Unfortunately, she didn't have any viable alternative to amoxicillin to suggest. She didn't want me to increase the dose of amoxicillin, since it's already making me ill; however, at this low dose, it's questionable whether it will be useful for treating the dental problems. She wanted me to try taking the probenecid again in a half dose, but I politely declined -- twice -- citing hives. When that didn't work, I just refused. If she prefers to think I have an inexplicable prejudice against probenecid, rather than a legitimate allergy, that's okay with me. Everything I learned in immunology told me that it's not a smart idea to take additional doses of a drug after you have had an allergic reaction to it. Hives = allergic reaction, so no.

I woke up multiple times again last night. I have had a headache since I started taking the amoxicillin on Friday. I also developed a full-blown yeast infection over the weekend. Oh -- and, of course, my teeth still hurt. Result: I am now cranky cubed. I think I'm going to discontinue the amoxicillin for now. I have an appointment on Monday with a possible alternate Lyme doctor, so I will ask her about it then.

Of teeth and typhoons

Remember a couple of days ago when I was feeling paranoid about taking my new meds? Of course you don't, because I forgot to write about it here.

Background:
On January 20, I went to the dentist to get my teeth cleaned. Thanks to all the dental problems I have had since the Lyme first made its presence known, and the fact that no visit to the dentist ends well anymore, I now have major issues with going to the dentist. On 1/20, I saw my 4th new dentist since 2004.

After the hygienist had taken x-rays and cleaned my teeth, the dentist came in to look them over, and asked me what the story was with the two missing lower right molars. He even said that it looked like I took good care of my teeth and shouldn't have any missing, or something like that. I don't think I have mentioned the molar story here, so I will give you the high points: pain for months with no sign of decay whatsoever, followed by 2 root canals that didn’t help and 16 days of Cipro, followed by 4 years of intermittent pain, multiple night guards, and many many visits to the dentist with normal x-rays and lots of shoulder-shrugging, then suddenly WHAMMO -- abscess and extraction, followed by 3 rounds of clindamycin, followed by continued pain, degeneration of the roots of the second molar and another extraction 4 months later. I still have pain on that side of my jaw where the teeth used to be and also under the next tooth in line. I tried one last night guard after the second extraction to keep my upper molars from descending. Due to my latex allergy I can now only have hard night guards, and my new night guard made my jaw pain worse. I went back to using my old NTI-TSS device, which fits over my front teeth only.

Back to the present: when the dentist asked about the missing molars, I mentioned that I had recently been experiencing some pain in two teeth on the other side. He did a percussion test and discovered not two, but four molars on the left side that were affected -- two on the top and two on the bottom. He did a very careful visual exam of my teeth, tested them for cold sensitivity (normal) and then took extra x-rays so he could look at the roots. Once again, there was absolutely no sign of decay. I got a horrible feeling of déjà vu.

The new dentist agreed with the other dentists I had seen since my Lyme diagnosis that Lyme disease could be responsible for my recent dental problems. He also strongly agreed that I shouldn't have any implants placed until the infection was completely resolved. He was very concerned and wanted me to see a neurologist, but I had received no help from neurologists for my dental problems in the past. So, I took the problem to my Lyme doctor. I mentioned that the new left-sided dental pain had started after I stopped taking the Lyme antibiotics and switched to the Babesia treatment, and that at the same time, my right shoulder had frozen up again. Ergo, I seemed to have two different infections that don’t respond to the same drugs. She agreed, and prescribed amoxicillin and probenecid to see if they would help with the joint and tooth problems. Probenecid is used as an adjuvant to amoxicillin because it blocks metabolism of amoxicillin in the kidney. People who take probenecid with amoxicillin can thus take a lower dose of amoxicillin. Nifty, right?

Back to the present:
Not nifty. I had an adverse reaction to the probenecid in the amoxicillin/probenecid combo: severe nausea and dizziness (think “typhoon on the high seas”) with headache and hives on my jaw and abdomen. The reaction lasted 8 hours, so I spent Friday on the couch trying to lie as still as possible and wishing I could puke. I skipped my Friday evening dose, then did a control test yesterday by taking just the amoxicillin without the probenecid (they are in 2 separate capsules). I had no nausea, dizziness, or hives, so I think I have identified the culprit. Of course, the amoxicillin is not side-effect-free either -- on Friday night I woke up twice, but last night I woke up some crazy number of times -- 5 or 6. So I am tired, cranky and irascible. Bah! Effing meds! Effing bacteria! Grr!

I'm going to call my Lyme doc tomorrow to see if there are any other alternatives.

Herxing again

I haven't been keeping very good track, but I'm herxing again tonight. Drenched in sweat, alternately baking and shivering, and have had a headache off and on all evening. It has been happening quite often -- not quite every night, but almost. Interestingly, it happens much more often at night after my 8PM dose than in the morning.

hormones, cont'd.

I found a BHRT doctor! Really. I did a search on Project Aware to locate the nearest compounding pharmacy that does bioidentical hormones, and this morning I called the pharmacist to ask for a local doctor referral. He knew of three. I called the first one on the list, and she had an opening on February 2, so I took it. I made sure to tell her that I was looking for a doctor who did BHRT, and she said “You have come to the right place!” Here’s hoping. As one of my friends said, "It’s like you have to complete a maze or something to find the right person to help. 'You have successfully completed Level One! Your new power is the ability to have your hormones tested!'"

In case the doctor wants to check my baseline hormone levels, I decided (regretfully) to wait until after my visit to start using the progesterone cream. That means I'll have one more episode of mood swings to deal with. Hopefully it will be the last.

mood swing update

I had an appointment with a reproductive endocrinologist on Monday. She agreed with my psychiatrist that my mood swings are linked to my ovulation cycle. So, the next thing I'm going to try for my mood swings is progesterone. The big question has been what form to use. The endocrinologist offered me Implanon or Depo Provera shots. I was reluctant to try Implanon because of my multiple adverse reactions to plastic IVs (the "container" is a small plastic rod) and because I get hypertrophic scars; the doctor was reluctant to let me try Depo Provera because of my multiple adverse drug reactions (it's non-reversible and lasts for 3 months). Progesterone-only birth control pills are out because my blood pressure now spikes when I take BC pills.

I asked the doctor if she had any experience with bioidentical hormones, and she said no -- that it might be useful, but that she didn't know anything about the bioavailability or dosing. She said I'd probably need to block ovulation to get rid of the mood swings, but I'm wondering.

So I decided to try bioidentical progesterone. I found one called Progestelle that is available OTC. It only has 2 ingredients -- USP bioidentical progesterone from yams, in a base of fractionated coconut oil. (It is also available in other base oils, for those with a coconut allergy.) I already know that I'm not allergic to coconut oil, and the fractionation means that it remains liquid and has an indefinite shelf life. Very cool. Apparently the bioavailability of progesterone when it's used topically is very high; unlike oral forms, it bypasses the liver and goes straight into the bloodstream. The one I bought has 800 mg progesterone per ounce. My first order came today. It's used on days 6-26 of your cycle, so I'll be starting it in a couple of weeks.

I also put in a referral request at the Women's International Pharmacy for a doctor who is experienced with bioidentical hormones. I didn't realize such a doctor would be so hard to find.

In the meantime, I have been reading up on Xenoestrogens and how they can affect the body's estrogen and progesterone levels. Not pretty. Even just reading the abstracts has me reconsidering several products I have been using for years.

The Malarone/coQ10 question

I stopped taking coQ10 when I started taking Malarone according to my doctor’s instructions. Unfortunately, it turned out that my 400 daily mg of coQ10 was what was working for my migraines -- they have come back since I stopped taking it. I have been having a mild one almost every day, and yesterday I had a seriously bad one. Last night, I decided to make it my mission to find out whether the coq10 ban was really necessary.

I had one clue that it might not be -- a post from a Lyme doctor in Germantown, MD who maintains a public blog about his experiences treating Lyme and its coinfections. In a post from 2008, he said that

Atovaquone…also appears to work through a mitochondrial mechanism. It interferes with electron transport- the final stage of the KREBS cycle necessary for cellular energy production. This is considered a possible mechanism of action. It does not involve the coenzyme Q10 pathway. And even if it did, it inhibits an enzymatic conversion in the cell. It’s effect would be independent of the amount of Q10 present. And furthermore- there is nothing to suggest that oral Q10 supplements would have any way of getting into bacterial mitochondria.

Q10 and Mepron both have effects in the mitochondria of cells. That is all they have in common. They work on different cellular mechanisms. If Q10 is an effective supplement for Lyme symptoms, then there is no scientific rationale for stopping it when anti-Babesia therapy is prescribed.

I know this contradicts advice I have given patients in the past. But not having the time to research every recommendation, I had taken this on faith. I think it was incorrect advice.

I spent several hours last night and most of today researching it. Here is what I found:

A synthetic analog of ubiquinol, or coenzyme Q10, atovaquone is a broad-spectrum antibiotic with an elimination half-life of 2-3 days in adults. Atovaquone selectively inhibits protozoan mitochondrial electron transport at the cytochrome bc1 complex and collapses mitochondrial membrane potential (Mather MW et al, 2007). It binds to the complex's cytochrome b subunit, specifically to the ubiquinol oxidation pocket, where it interacts with the Rieske iron-sulfur protein (Kessl JJ et al, 2003).

Ubiquinol binds both to the oxidation pocket and the Rieske protein (Wikipedia, “The Q cycle”, no reference). Normally, ubiquinol then participates in a redox reaction with ubiquinone, which binds to a nearby site on the cytochrome b subunit. As part of this reaction, ubiquinol gives up an electron to the Rieske protein, which then passes it on to the cytochrome c1 subunit of the complex (Zhang Z et al, 1998; Crofts AR et al, 1999). There’s a second half to the Q cycle, which you can read about here.

Although Atovaquone and ubiquinol bind to the same sites on the cytochrome bc1 complex, they use different binding residues. When atovaquone is bound, though, it blocks movement of the Rieske protein domain by locking the protein in its cytochrome b-binding conformation, preventing the electron transfer I described above (Mather MW et al, 2005). Without the electron transfer, the Q cycle cannot be completed; thus, no need for ubiquinone…

…in bacterial mitochondria, at least. I still need it to keep my cranial blood vessels happy. It did occur to me to wonder if ubiquinone participated in any other mitochondrial reactions. It does, but since atovaquone collapses mitochondrial membrane potential I can't see how it could get in. And, as far as I can tell, even if it gets into the bacterial mitochondria, it won’t matter, thanks to Malarone's super-long half-life .

So I started taking it again. I feel a bit like a renegade, and also insecure about my biochemistry memory, so I’m going to take the coQ10 2-3 hours away from my Malarone doses (not that that will make any difference, given Malarone’s long elimination half-life -- it will either be a problem, because there's something that I've missed, or it won't). Since the Malarone has been giving me what I think are Herxheimer reactions every few days, I’ll watch to see if the Herxes stop with the addition of the coQ10. If they do, then I’ll discontinue it and start looking for another functional migraine remedy.

FUN! Wasn’t that fun? I LOVE SCIENCE. It gave me a huge rush to get even this far in understanding how this works.

Am I herxing?

I think I have been herxing. Several times since starting it I have either woken up boiling hot and sweating (to the extent that I had to throw off the covers and the pajamas and socks I usually sleep in, in my frigid bedroom) or had spells of similar sweating or chills during the day. I have taken my temperature during the chills and found it to be 97.1 (my "normal"). Dr. Z told me some time ago that this could be from HPA axis suppression.

When I woke up early this morning, in addition to the sweating, I had shooting pains in my legs and feet and my muscles were all tensed up. I concentrated on my breathing, and after about an hour was able to relax enough to go back to sleep. It reminded me that I should write it down, though.

Another thing I keep forgetting to write down -- my right shoulder is freezing up again. I suspected it a few days ago, and now I'm having trouble reaching behind myself to shrug off a coat. I'm hoping that getting up to the full dose of Malarone this weekend will help; if not, I need to mention it to Dr. M when I see her on 1/24.

note to self:

Don't walk two miles when you have plans -- any plans -- the next day.

I walked to the hospital and back for my mammogram yesterday. I had planned only to walk there, and then to take a cab back. There was a cab in the cab rank right by Barns & Noble, but it was such a nice day, and I wasn't in too much pain yet...

By the time I got home, I could barely move. I sat down to rest and didn't get up for hours. It seemed like I kept feeling more, not less, tired. When I finally stood up to make dinner, I felt weak and shaky, with pain in all my weight-bearing joints and full-on fog brain. On and off for the rest of the day yesterday and today, I have had a migraine with left eye pain and what seems to be blurry vision -- general inflammatory symptoms, for me. I am seriously, non-functionally exhausted.

I wish I didn't love walking so much. I miss, not just being out in the world, but moving through it under my own steam.