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.