Follow-Up Appointment Two with Dr. D in Kirkland

It was beautiful this morning unlike yesterday when it was cloudy and raining pretty much all day long. It's actually sunny today and I couldn't resist taking a short walk this morning in the neighborhood behind the hotel. After my appointment with Dr. D it was only 10:30 AM and I decided to take another walk. Below are some pictures from the park I went to which is less than a block from the doctor's office.

Must be nice to have a house backing to a quiet, beautiful park.

Now to my appointment with Dr. D. I mentioned that I have been urinating more again the last 4 or 5 days. When I first went back on Desmopressin about 2 weeks ago I actually managed to sleep through the night a few times without getting up to urinate. Last night, in comparison, I got up at 1 AM, 3:20 AM, and 5:30 AM and had to urinate each time. Not fun. At the same time, with increased salt intake I feel like I am retaining more fluid again which is evident in my swollen eye lids when I first wake up.

Dr. D said unfortunately when a person is chronically ill fluid and electrolyte balance sort of gets put on the back burner for a while because it's not vitally important. As patients heal, all that starts working on its own again. She did say to eat as much salt as I want to and I can use black tea bags on my eye lids to help remove toxins and get the swelling down.

I asked her about some of the foods listed as ok to eat on the Lyme/KPU/Low Oxalate food list that are listed as high oxalates on other lists. She said it has to do with the fact that this list is also specifically for people who have Lyme and KPU and also because they found that people were just severely limited when they were 100% strict on their list. So they found that the list of foods she provided was the best option they could come up with.

Since we were talking about the food list I told her that I finally quit drinking coffee when I saw that it is on the "foods to avoid list". I told her that I brought some coffee anyhow for muscle testing and asked if it's ok to drink it if I test ok for it even though it's on the list of foods to avoid. She said absolutely. I then started to explain that green tea makes me feel nauseated and she said she doesn't like tea anyhow because of the fluoride in it and one cup of coffee a day won't hurt me. I love my doctor!

I asked how many colonics I should be doing during parasite treatment. As I had already read from Dr. Klinghardt, she said 2 colonics a week back to back would be ideal. However, she said if I can do 3 coffee enemas a week on my own then I can get by with 2 colonics a month back to back. Much better.

Next I got on the table for some muscle testing. I had asked her to see if she could check me for excess histamine and mast cell issues. She did and said what I have is a condition that often occurs in patients with KPU which is actually low histamine. She explained that if my baseline is 1 for example and I get histamine at a level of 1, then my histamine level is now doubled and my body, which is already highly sensitive, just can't handle it and has a reaction. But if my baseline level were 100 for example then an additional histamine level of 1 is not going to impact me all that much. So she prescribed a homeopathic that will gradually increase my histamine levels. Also MaxiFlav which is quercetin and MSM. I believe she said MSM would help to detox my connective tissue. Below is the new, updated treatment plan. New items are bolded.

Histamine Regulation:

1. Histamine Low Potency Homeopathic - 10 drops twice a day on tongue 15 minutes prior to food. Ideal to do this first thing AM and last at night.
2. MaxiFlav - 2 capsules first in the morning and last at night.

Digestive Support

1. Custom Probiotics 11-Strain Formula - 2 scoops a day in addition to existing probiotics.

Detox Support

1. Hyaluronic Acid - 2 dropperfuls twice per day under tongue 15 minutes away from food.
2. Galactose - 1/2 teaspoon twice per day in water.
3. MSM - 1 heaping teaspoon in water with breakfast and lunch.

Anti-Microbials

1. Cordy Chi - 2 capsules twice per day before meals.
2. Rizol Gamma - 10 drops twice per day in a little water, gargle then swallow twice per day.
3. Homeo-K BAB - 5 drops twice per day with other Homeo-K remedies.

 Other

1. Homeo-K Energy -  5 drops twice per day with other Homeo-K remedies.

After my walk this morning after the doc appointment I came back to the hotel and grabbed some lunch. At 12:30 I was back at the clinic for my steam sauna followed by a colonic. As usual the colonic was tough - lots of cramping and some mild nausea - but chatting with Desiree, who stayed with me for both of them, was great just like last time. We seem to have a lot in common and I could talk to her for hours. She said she was really glad to see that I was on her schedule because I have a special place in her heart. That made me feel good.

Now I am back at the hotel just hanging out. By the time I left the clinic it was cloudy and dark again and the temperature had dropped quiet a bit. So I am staying in just chilling. I am kind of worn out from the sauna and colonic anyhow.

I got back to the hotel again around 2:30 PM. It was still really nice outside but after the sauna and colonic I was pretty drained. Since I didn't take a shower before the two treatments I got cleaned up, got dressed and went to Metropolitan Market to pick up some food for dinner and also for the trip home tomorrow.

On a different note, I am even hungrier than usual and my sweet/carb cravings are off the charts since starting Ivermectin and Pyrantel Pamoate. I hope this won't continue the entire time I am taking anti-parasitics.

Follow-Up Appointment One with Dr. D in Kirkland

I got to Seattle yesterday around 7 PM, picked up my rental car and drove up to Kirkland, WA. I am staying at the Baymont Inn just like last time. Nothing fancy but it's cheap, relatively clean, and about 5 minutes from the doctor's office.

Before I start writing about the appointment earlier today I should mention that I started having chest pain on the left Friday a week ago. A few days later I started having pain in my left lower arm and in my left hand. This pain was very much like the pain I experienced after the blood donation last spring any time I took potassium. So I tried reducing my intake of potassium chloride but it didn't help. Next I tried stopping Vasopressin, since it can affect electrolyte balance but that did not help either. Finally I decided to call Dr. D but she was out and I ended up talking to Dr. A. She ordered some lab work (CMP, CBC, and thyroid) which I got first thing last Thursday and a stress EKG which I have not gotten yet. Sodium and potassium looked great, but some other things were off. WBC was low, EOS was elevated, ALT PHOS was low, and more.

So the first thing Dr. D and I discussed today was the pain in my chest and in my arms. The latter went away about two days after I broke my fast so maybe some of it was due to die off. Hard to say. I also started my anti-parasitics last Friday - I took Biltricide for two days and since Sunday I am on Ivermectin and Pyrantel Pamoate. I have to take both of those for 14 days then I start Albenza.

Dr. D then asked if I had any questions which I did. I had read that some organisms/biofilm like fat and was wondering if eating a high fat diet would make things worse. She said that is true and Dr. Steven Fry sometimes puts people on a low fat diet, but she said there are too many other health issues associated with eating a low fat diet that she is not in favor of a low fat diet, especially since I am on quite a few anti-microbials. She said she would prefer that I eat as much fat as I can tolerate as long as I stick to healthy fats like animal fats from pastured animals, coconut oil, butter, palm oil, etc.

I asked her if DPP IV really does help with gluten digestion, not because I want to start eating gluten, but as a preventetive measure if we go out to eat or on our upcoming cruise for example. She said that it definitely can be helpful and that is exactly when she would use it, but not for eating gluten on a regular basis.

I had also read that some organisms love hormones and having low hormone results could be an indication of the body down regulating hormones so bugs aren't being fed. My concern was with the fact that I use both progesterone cream and testosterone cream. She said that this is also true, but when a person is on anti-microbials it's good to replace the missing hormones to build them up a bit.

Next I mentioned that I still get a lot of itching from the detox deodorant. When I brought it up over the phone a few weeks ago she thought it might be due to metals being drawn to the skin and fungi going crazy eating the metals. She suggested putting coconut oil on my skin but it did not help. Actually, the itching got so bad, I sometimes wake up in the middle of the night, walk into the bathroom, and "scratch" myself with my dry skin brush. I also started getting small bumps on my skin. Dr. D said unfortunately that means I am most likely allergic to one of the herbs in the deodorant and to stop using it.

I mentioned that the abdominal distention seems worse than ever as does my never ending hunger, and that I am now also craving sweets since starting the anti-parasitics. She feels confident that the abdominal distention and hunger are from parasites, and the increased hunger and sweet cravings are most likely die off from the anti-parasitics (which is a good sign).

Dr. A had come in to join us and next they asked me to get on the table to see what's going on with my body using ART (Autonomic Response Testing). Dr. D said that I seem to be dealing with Babesia issues right now and it appears that the Babesia is causing the chest pain. Apparently this is very common for Babesia and often an EKG will look perfectly normal but she still wants me to go ahead and get it.

Parasites are also big for me right now and I tested good for all the anti-parasitic medication. She said I should have a little splurge on occasion and about 15 minutes later take my anti-microbials. Eating sweets draws bugs into the gut where the medications are active, so eating something sweet then taking meds will kill some bugs apparently. I also tested for needing more probiotics than I currently take.

Also, my liver is really struggling right now as are my kidneys. Below is my treatment plan for now. She said not to refill any of my existing supplements until we have tested them on Friday.

Treatment While in Kirkland

1. IV Hepa Merz (for liver support - got this earlier today)
2. O-Zone Steam Sauna followed by Colonic (scheduled for tomorrow)
3. Cranial sacral with Dr. Beck (she is out so I am not getting this one)

Digestive Support

1. Custom Probiotics 11-Strain Formula - 2 scopps a day in addition to existing probiotics

Detox Support

1. Hyaluronic Acid - 2 dropperfuls twice per day under tongue 15 minutes away from food
2. Galactose - 1/2 teaspoon twice per day in water

Anti-Microbials

1. Cordy Chi - 2 capsules twice per day before meals
2. Rizol Gamma - 10 drops twice per day in a little water, gargle then swallow twice per day
3. Homeo-K BAB - 5 drops twice per day with other Homeo-K remedies

 Other

1. Homeo-K Energy -  5 drops twice per day with other Homeo-K remedies

Next appointment is tomorrow at 9:45 AM.

GAPS Re-Intro: Day 1

I was going to start over once again with GAPS Intro today. Unfortunately my day started crappy like so many days. I woke up with a headache and backache, tired, tachycardia (up to 137), fluid retention, and I had abdominal distention from the start before eating or drinking anything. Drinking coffee made it worse - this could be "PMS" or rather hormonal. It's too hard to tell these days but I hate it.

In my last email to Dr. Cowan I asked him to address the abdominal distention. His reply was that it's probably just "bad gut ecology but we can try a course of Nystatin". So this is about the 4th or 5th person who is indicating that I have fungal overgrowth. Maybe God is trying to tell me something!!!

I told Dr. C that Nystatin gives me the same symptoms as I get from probees and ferments - headache, backache, fatigue, anger, constipation, etc. I assumed those were die off but during our last phone consult he indicated that I probably just don't tolerate those strains of bacteria. That doesn't really make sense to me especially since I am getting the same symptoms from coconut oil, palm oil, GSE, oil of oregano, Nystatin, and other anti-fungals and anti-bacterials. I still think it's wicked die off what I didn't understand is why it just won't stop, then I started reading Dr. Myhill's free E-book on CFS. According to her research CFS is caused by mitochondrial failure. Mitochondria supply energy to all the cells in our body and if mitochondria fail all organs are affected and everything slows down. It can even lead to POTS which is something I have been dealing with as well. Reading her book was like reading about myself. I finally had an explanation for all the weird symptoms I seem to be having, including the fact that I am SO toxic despite a clean diet and clean lifestyle. Since all organs are affected in mitochondrial failure that means your skin is affected. In the book it states if micro-circulation to the skin is shut down, the body cannot detox. It also explains heat intolerance, something else I have been dealing with, because the skin is responsible for controlling the temperature of the body. When the blood supply to the skin is shut off, the body cannot loose heat through the skin and the core body temperature rises.

Dr. Myhill recommends a Stone Age Diet, 9 hours of sleep every night, plenty of rest and pacing oneself, and a supplement regimen for people with CFS/mitochondrial failure. Some of the supplements I already take, some I can't get here (she is in the UK), and some key supplements (d-ribose, l-carnatine, CoQ10, and niacin) I ordered and they should get here Friday. I am hopeful yet I am afraid to be hopeful.

Back to GAPS Intro - so I was going to start over today but I am wondering what the point is. I mean, I am still on Stage 2 minus egg whites/gee/butter. Of course as usual, the perfectionist in me wants to do it right, go through the stages, add one thing at a time, etc. I am not sure what to do and I am also torn about adding ferments back in - maybe one drop at a time - and now also adding Nystatin. Dr. C said to start with a pinch and work my way up. I was thinking about using the baby scoop from my Custom Probiotics. That's about 1/16 of a teaspoon or less which is a small dose.

I am trying to find joy, be happy, and enjoy life but it's not easy right now. I feel overwhelmed with all these symptoms and the fact that it seems impossible to find a good doctor - one that will truly listen, take his/her time, not just blow me off because I take Cytomel for hypothyroidism, or look at me like I am insane when I mention some of my symptoms. 

House Rules

I am reading a book by Jodi Picoult (one of my favorite fictional authors) called “House Rules”. The story is about a woman with two sons, one has autism. What I like about her books is that she narrates from each character’s perspective. Sometimes the same scene is described by two different characters. So I was reading a chapter the other day written from the autistic boy’s perspective. In it he writes about where he “goes” mentally and it really spoke to me. I talked about a black box in my head the other day but I think this describes it much better. From the book page 100:

“This is where I go, when I go:
It’s a room with no windows and no doors, and walls that are thin enough for me to see and hear everything but too thick to break through.
I’m there, but I’m not there.
I am pounding to be let out, but nobody can hear me.”

This is exactly how I feel. I can see myself going into my closet, getting on my knees, and crying out to God, but then I just don’t do it. I don’t know why, I just can’t or won’t. I function, I am polite, I take care of my husband, I feed/water my dogs, I mow the yard, I go to church….I do everything I am supposed to do. I am there but I am not really there. Physically I am, mentally and spiritually I am in that room without windows or doors. I hate how this feels. It’s a lonely place.

******************
Yesterday I had a follow-up appointment with my doctor to discuss the results of the second stool test. This test showed that Klebsiella is gone, yeast is gone, still no growth of lactobacillus or bifidobacteria, and clostridia actually went up rather than down. Also, short chain fatty acids are still not optimal and sIgA, which was already really low, is even lower. The only suggestions he had was to go back on Culturelle to bring the clostridia down, to switch to his probiotic since a lot of people have success with it, and to add l-glutamine to possibly bring up the sIgA. I discussed the possibility of having a stricture of some sort in my small intestine and he said it’s possible. He was apologetic about the fact that my symptoms haven’t really improved much (if at all) and gave me the name of a gastroenterologist. He said the gastro could tell me what type of testing I might need to check for a stricture or adhesions. I am hesitant to go because the last highly touted gastro I went to told me I have IBS (this is after waiting 2 hours to see him and then him spending seven minutes with me) and gave me a prescription for Reglan and Sennoside. I tore both of them up.

Anyway, because I keep having this nagging feeling that there IS some structural issue, I guess I will go see this gastro. But while I was sitting with the doctor yesterday, and when I walked out, I was on the verge of tears. I had increased die off yesterday from going overboard on kefir the day before, AND I had woken up at 4 AM and was really, really tired. Part of me wants to stop going to doctors, but I am not sure I am ready for that yet. So to practically hear this doctor give up on me caused some anxiety. Millie has been encouraging me to just trust God and that he will heal me through GAPS. As I was running errands after the doc appointment I was wondering if this is the point God is bringing me to. Do I just stop and do GAPS and assume eventually it will heal my body? Do I keep pursuing the possibility of a structural issue? Two osteopaths in Germany told me I have a stricture. Actually, one said that “everything is sticking together”. Or do go back on Paragone in case there ARE parasites and my body just can’t heal with GAPS alone? I really don’t know what to do and of course being in that “room” described above, pretty much makes it impossible to hear from God.

I also felt very lonely yesterday because I desperately wanted to call someone and talk about the doctor’s appointment, but I didn’t know who to call. It made me feel like all that is left is God and that scares me because right now I don’t get any comfort from talking to God or reading the bible or going to church even. But again, is this the point God is trying to bring me to….where nothing is left but Him and my back of coping tricks is empty? I really don’t know.