April 2012 Update

It's been almost two weeks since I got back from Seattle and I have seen some good changes. Dr. D added Custom Probiotics 11-Strain Formula to my treatment plan since I still had some and she says they are good probiotics. For a long time I could not tolerate any CP at all but now I am up to 1/4 of the adult dose a day, in addition to various ferments including Kombucha, plus Pro Calm, Acidophilus, and Supernatant. Just a few months ago I could barely tolerate a drop of Sauerkraut brine so that's a definite improvement.

Last week I had several days where I felt joy. There was no dark, gloomy feeling and I was able to just enjoy the day, be happy, and have fun, despite all the other nasty symptoms, including the daily, and very uncomfortable abdominal distention. For the longest time I felt that the negativity was out of my control and having those days where I didn't have to try or work very hard to think positive was proof that I am right.

On the days I felt more joy I also had more energy. I even did a mini-workout on a few days in addition to cleaning the house. That is a HUGE improvement for me and I am so looking forward to when I can work out on a regular basis again.

A few days before I went to Seattle I had started taking Ivermectin and Pyrentel Pamaote. On those two anti-parasitics I felt that I was even hungrier than before and I was craving sweets again. Luckily I am done with those and have been taking Albenza for three days now. The second day on Albenza I started getting a headache, yesterday it was worse than the day before and I also started feeling like I was getting a sore throat and an earache. This morning the headache is improved, but the throat pain and earache, mostly on the left side, are still there. I also have a runny nose and my teeth are sensitive to hot and cold only on the left side.

Shortly before ending my fast I started getting chest pain on the left side and my arms hurt sort of like they did after the blood donation last year. The pain wasn't bad but I was a bit concerned thinking it might be an issue with my heart. I had called CMC and since Dr. D was out I ended up talking to Dr. Z. She ordered a CMP and CBC and also asked me to get a stress EKG. I got the blood tests the next day and my electrolytes were fine. I still haven't gotten the stress EKG, but once I started eating, the chest pain improved and some days it even went away.

Monday and Tuesday this week I didn't get to eat all day and by mid-day the chest pain was back and worse than before. When I finally got to eat something in the evening the pain would go away after one or two hours. Dr. D thinks it's Babesia and not my heart itself (but she still wants me to get the stress EKG just to make sure) and said that it's very common with people who have Babs. The fact that it improved when I broke the fast and ate something those two nights also makes me think it's Babs/die off but like Dr. D I want to make sure that my heart is ok. I went to see a cardiologist on Monday and they had initially told me that they could probably do the stress EKG the next day, but they had to do a pre-cert with my insurance company first. So they had scheduled me for today but I never did hear back regarding my insurance coverage so I re-scheduled the stress EKG for 05.09.2012 since I am heading to Orlando tomorrow.

DH is at a conference in Orlando (since last Sunday) and we are meeting at the airport tomorrow. We are taking a shuttle down to Cocoa Beach and Sunday we are getting on a 7-Night Western Caribbean Cruise to celebrate our 10th anniversary. I am looking forward to it but I am also hoping the die off from Albenza and all the other stuff I am taking will subside a bit before I leave tomorrow or at least before we leave Sunday.

Our friend L is staying with the dogs while we are gone which I much prefer over them going to a kennel. Unfortunately Mojo is not doing so well this week. What seemed like just constipation turned out to be an infected and swollen anal gland. I took him to the vet Monday and Dr. McCormick drained it and put him on antibiotics. It was awful....poor baby was in so much pain and it broke my heart to see him hurting so much. Dr. McCormick said infected anal glands respond really well to abx treatment and that he should be back to normal by the time I go on vacation. Well, he's not back to normal. Right after the vet appointment he was finally able to move his bowels several times, and since then he has been back to having a hard time. I have been giving him the antibiotics, I increased his NuVet Pet tablets to strengthen his immune system, and yesterday I did several warm compresses, but just like before he tries very hard to have a bowel movement but nothing happens. I called the vet yesterday and they suggested that I bring him back in today. I was really hoping he didn't have to go back to the vet again and I am praying that he doesn't have to go through the same thing as he did last Monday. I am also worried about going on vacation tomorrow with him not feeling well. Praying that today will be a pain-free vet visit for Mojo and that he will be feeling great by the time I leave tomorrow.

Follow-Up Appointment Three with Dr. D in Kirkland

My last appointment with Dr. D yesterday went really well. I asked her how parasites cause someone's metabolism to slow down and she said (according to Dr. K), the parasites get all the good stuff from your food, while you are left with all the crap. She said the majority of people with parasites are actually overweight, not underweight, like most people think. I guess the way that makes sense to me is similar to when you starve yourself, constantly cutting calories, eventually the body will down regulate. Dunno if that's what she meant but I suppose that could be it.

A few weeks back I has asked her in an email if there is something I can do or take to bring my iron levels down since blood donation is out due to POTS. She replied that I could take Artemisinin so I asked her if she could muscle test me for it.

Next I got on the table and she muscle tested all of the supplements I was on from our previous visit as well as some foods. I had brought the following with me:

• Kerrygold Butter
• Ghee
• Kefired Cream
• Mayorga Organic Coffee
• Avocado
• Egg White
• Egg Yolk
• Fermented Cod Liver Oil

I tested good for all the foods except the egg white which was neutral. Incidentally I am not crazy about egg whites and they are also in the "neutral" section of the Lyme/KPU/Low Ox list she sent me.

When she told me that coffee tests good I mentioned that I will most likely switch to decaf since I am on very little caffeine now anyhow and she said to stick with regular coffee. According to Dr. D caffeine does have some benefits and decaf can have toxins, even if it's Swiss water process decaf. She said caffeine from coffee can benefit the liver and may even help to absorb my supplements better. Again, I love her!


For the past two weeks or so I had been considering increasing Naturethroid from one grain to two grains and reducing Cytomel from 75 mcg to 50 or 62.5 mcg. My body still seems to have a hard time with Cytomel and the result is more heart racing. My last FT3/RT3 ratio was 67.9 and it needs to be above 20 so I have a little bit of room for RT3 to go up. I did not mention this to Dr. D but when she muscle tested me for Naturethroid it tested really well and as possibly needing more yet when she muscle tested me for Cytomel and Cynomel it came up as sort of blocking and possibly needing less. I am afraid to make that change since I don't want to have RT3 issues again, but maybe it's the best thing to do. It sure would be nice to be off the beta blocker completely. 

Dr. Alina was in with us again for the muscle testing and once we were done they wrote everything up for me. Unfortunately I left my treatment plan at the clinic so can't really post it yet but will do so as soon as I get it. However, she did say that she wants me to start drinking Dr. K's Lyme cocktail daily which consists of water, grapefruit juice (the "recipe" called for 1/4 cup but she said I can reduce it to 1 tablespoon), Quintessence, Mimosa Pudica, Artemisinin powder, and Lipo- Health. She wants me to run this cocktail in an ultrasonic cleaner eventually and since I wanted to run my liposomal C through one anyhow I went ahead and just ordered this one. Dr. D said to start out with the cocktail just fixed in the blender and once I tolerate the full dose to run it through the ultrasonic cleaner because it can cause too much die off running it through the cleaner immediately. This cocktail is in addition to the other new items she prescribed the first two days and in addition to most of the supplements I am already on. There were a few that were blocking which I will also post when I get my treatment plan.

Dr. D said that the anti-parasitics are really good for me right now and that Alinia, the last one I am supposed to take, is going to be great IF I can tolerate it. She said the Babesia will not like Alinia at all and some patients get chest pain or tightness, nausea, vomiting and other serious symptoms. In case I have a pretty severe reaction, she gave me her email address and cell phone number and said to let her know immediately if I get any of those symptoms so we can decide together whether I should continue or not.

Going forward she wants to talk on the phone once a month and if I can, she wants me to come back in person in July. She said at that point I could see Dr. K along with her and it was up to me. I told her that I would leave it up to her and we could decide later. Her concern was that he would be booked already so she said to go ahead and make an appointment with him for July and if necessary we could cancel it. Her concern is that I wouldn't be ready for Dr. K yet. She said I have made great progress but if I am not far enough along then his treatment will be too advanced and it would just be a waste of time and money. But she feels that I will be ready to see him if I can make it through the Alinia treatment. Right now I am still on Ivermectin and Pyrantel Pamoate, on 4/22 I start on Albenza, and on 5/20 I start on Alinia, 500 mg, three times a day, for 20 days. I hope it goes well.

Treatment Plan

Anti-Microbials

1. Lyme nosode – follow package instructions.
2. Lyme Cocktail – Mix the following ingredients in a blender. Drink half in the morning and half in the evening. After initial die off is over run 15 minutes in ultrasonic cleaner after mixing in blender.
1. Quintessence - 6 dropperfuls
2. Grapefruit Juice - 1 tablespoon
3. Water - 1/4 cup
4. Artemisinin - start with 200 mg, work up to 600 mg per day as tolerated.
5. Lipo-Health - 1 teaspoo
6. Mimosa Pudica - 1/2 teaspoon per day, start with 2 days perr week, work up to 5 days per week as tolerated.
3. Garlic and TriQuench – add the following to a little water in nebulizer and inhale once daily
1. TriQuench – two drops
2. Allimax – five to ten drops
4.  Anti-Parasitic Treamtent – take in order listed
1. Biltricide – two tablets three times per day for two days. Pause two weeks and repeat once. Ideally start with full moon (started this on 4/6/2012)
2. 12 mg Ivermecting four times a day and 1,000 mg Pyrantel Pamoate at bedtime 14 days
3. 400 mg Albenza twice a day for 28 days
4. 500 mg Alinia three times a day for 20 days
5. Valtrex – 1000 mg once per day at bedtime for at least three months (may continue this longer due to high viral load).
6. Cordy Chi - 2 capsules twice per day before meals.
7. Rizol Gamma - 10 drops twice per day in a little water, gargle then swallow twice per day.
8. Homeo-K BAB - 5 drops twice per day with other Homeo-K remedies
9. Rectal implant – combine 1 scoop of BioPure arteminisin with one capsule of organic, freeze-dried garlic in a ¼ cup of warm water. Insert rectally at bedtime two nights per week, not on consecutive nights.

Endocrine and Organ/Glandular Support

1. Diutrex – one tablet two to three times daily before or between meals.
2. Drenatrophin PMG – two tablets three times per day before meals. Hold on tongue 5 to 10 seconds before swallowing.
3. Cardiotrophin PMG – one tablet three times per day before meals with the Drenatrophin.

Detox Support

1. PC Ecklonia Cava – six tablets per day at bedtime.
2. CGF (liquid chlorella) – ½ teaspoon three times per day at least 15 minutes before meals.
3. Hyaluronic Acid - 2 dropperfuls twice per day under tongue 15 minutes away from food.
4. Galactose - 1/2 teaspoon twice per day in water.
5. MSM - 1 heaping teaspoon in water with breakfast and lunch.
6. Detoxamin suppositories – insert on rectally at bedtime once a week.
7. Pascalite bentonite clay – one teaspoon twice per day mixed into juice or water, follow with 8 ounces water. Do this twice per day at least 15 minutes before meals.

Nutrient Support

1. CORE – six tablets daily after a large meal.
2. Vitamin D – 6,000 IU daily.

GI/Digestive Support

1. ProCalm – four capsules per day at bedtime.
2. Supernatant – two capsules twice per day after meals.
3. Betaine HCl with Pepsin (Thorne) – two to three capsules at the beginning of each meal.
4. Custom Probiotics 11-Strain Formula – work up to two adult scoops per day
5. Zypan – two to three before a meal

Circulation Support

1. Venex (bee venom ointment) - apply topically to skin over nech (thyroid) and back

Methylation Support

1. Methyl B12 shots – inject 0.5 ml methylcobalamin (10mg/ml) just under the skin of the abdomen, thighs, or buttocks twice per week.

Adrenal Support

1. Ribes Nigrum – 20 drops twice per day in a little water – hold in mouth for 10 seconds before swallowing. Take first in the morning and again early afternoon.

Sanum Remedies (I had these from Germany)

1. Sanum remedies Mucokehl, Notakehl, and Fortakehl – 10 drops twice per day at least 20 minutes away from food.

Homeopathic Remedies (online from www.biopure.eu/USA or directly from Germany)

1. K-OXY – five drops twice per day on tongue.
2. K-METHYL – five drops twice per day on tongue.
3. K-MAF – five drops twice per day on tongue.
4. K-ADH – five drops twice per day on tongue.
5. K-Energy – five drops twice per day on tongue.

Other

1. Two colonics back to back once a week OR 3 coffee enemas a week plus 2 colonics back to back once a month

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.