Follow-Up Appointment with Dr. D June 2012

Several things have been going on since I last talked to Dr. D in May. I finished Albenza, the 4th anti-parasitic medication on my treatment plan, and started Alinia on 5/23. I was a bit worried about starting it since she said it could cause vomiting, diarrhea, heart racing and more. I did not have any of those symptoms and actually felt quite good the day I started it. The next day however, I felt like crap. I felt wiped out, tired, and out of it mentally. This went on for a few days as well as night sweats, going back to waking up at night, feeling utterly frustrated, angry, and irritable, and just feeling lousy overall.

I also had blood drawn on 5/23 to check my thyroid levels. My FT3 was actually higher than last time I had blood drawn in March, although I was on less Cytomel. Since muscle testing in April had revealed that I am somewhat blocking on the Cytomel but testing really good on Naturethroid, I decided to take the plunge, go up from 1 grain NT to 2 grains, and reduce Cytomel from 68.75 mcg to 12.5 mcg. It scares me a little since I don't want my RT3 issues to come back, which basically means going hypoT, but I can't deal with all the heart racing from T3 either. It also would be nice to stop taking the beta blocker. In addition, Dr. D said that a lot of her patients are able to reduce thyroid meds as the bacterial and parasite load goes down. Once they heal completely many of them are able to go off thyroid meds completely, even if they have been on them most of their lives, or they take a much smaller dose. That's awesome!

When I told Dr. D about all the new or returning symptoms she said she believes it's all from Alinia. Not side effects, but die off. Apparently all of her patients who take Alinia have a hard time during the first round. If they have to take it again it's not near as bad. I had seen some improvements in mood and energy before starting Alinia and she believes I will feel even better than when I am done with it.

We also discussed my elevated blood sugar. It was 89 in March and 101 in May. I have been checking it here at home since the May blood test and my fasting is running between 100 to 105. Not good! She said it could be an indication of an active infection, most likely bacterial. I hadn't gotten the Diabenil yet which she mentioned during our last phone consult so she said to go ahead and get it and start taking it as suggested on the bottle. I got it in the mail yesterday.

I mentioned the white spots on my lower legs which I started getting in 2007. I told her they look like idiopathic guttate hypomellanosis to me and asked if this is typical in chronically ill people. She said not all of her patients have them but many do. She said it's common with parasite/fungal infections, can also be related to blood sugar dysregulation, and that it does improve as the patient heals. That's promising.

The cardiologist I went to see for the stress EKG finally sent the results to her and it said the following:

"A fixed defect was noted in the anterior wall and apical segment which is most likely secondary to soft tissue attenuation, although cannot rule out prior myocardial infarction."

She said the cardiologist recommended a cardiac CT but since the chest pain is gone now she would like to hold off since CTs have such high radiation. Right before the chest pain started I woke up one night with horrible stabbing pains around my heart. It was awful and very painful, but then it just stopped and I went back to sleep. As it was happening I was scared and wondered if I was having a heart attack. However, because it stopped so quickly and I went right back to sleep, I figured it couldn't have been. Now I am wondering if it was.

Last but not least I have been dealing with quite a bit of nausea. I have considered many different causes but still haven't completely figured it out. I think 5-HTP may have something to do with it but I am not sure yet. Of course it would be hard for her to know what is is from, especially since the nausea started before I started taking Alinia. She recommended a homeopathic from Nestmann called Frangula. So far I have not been able to find it online.

Chronic Lyme and Weight Gain

First I want to point out that there is a difference between early stage Lyme and late stage Lyme, also referred to as chronic Lyme. Every so often when people find out I have chronic Lyme they say, "I had Lyme....got bitten by a tick, took a 10-day course of antibiotics and I am fine." Believe me, if a 10-day course of antibiotics could cure me I would have taken them already!

Also, if I had taken antibiotics right away I may be fine, too, but I didn't. I don't know exactly how long I have had Lyme disease, but easily 10 years or longer. That's a big difference to just being bitten the first time and then taking antibiotics immediately.

In addition, I would question their definition of "fine". Usually the same people also quite often complain of headaches, fatigue, muscle aches, feeling more tired than usual, not being as limber, and other ailments, and they are usually overweight. I don't consider any of those ailments or being overweight as fine. In addition, I don't want to feel "fine" I want to feel GREAT. I want to wake up in the morning ready to start the day, feeling joyful, with energy to exercise, go to work, hang out with friends, and enjoy life. The way I used to.

OK, I will get off my soap box now and instead talk about what I had intended to talk about. Many people with chronic Lyme disease lose weight involuntarily and can even get dangerously thin. However, from what I have read, and from what my doctor has told me, the majority of people actually gain weight. Below are some possible reasons explaining why:

Adrenal Insufficiency

Stress of any kind, whether emotional or physical, taxes the adrenals. Stressed adrenals produce too much cortisol and eventually won't be able to produce enough cortisol. This leads to thyroid as well as other issues that can cause weight gain. This is obviously a very short explanation but there are many articles on the interwebs about adrenal insufficiency so it makes no sense for me to go into more detail here. The key is that a prolonged infection, such as chronic Lyme, is major stress on the body and will tax your adrenals.

Hypothyroidism

This means that your body is not making enough thyroid hormone OR you do have enough thyroid hormone but it is not getting to where it needs to go. The former, as mentioned above, can be caused by adrenal insufficiency. The latter is called a functional deficiency because your blood tests will look normal but it just shows the level of hormones floating around in your blood. All bacteria (not just Borrelia burgdorferi - the Lyme bacteria), parasites, fungi, and viruses release toxins. These toxins can occupy thyroid receptors blocking the actual thyroid hormone from getting to them and the cells, where they need to be. Hypothyroidism leads to weight gain among many other horrible symptoms.

Reverse T3 Syndrome

Your body makes a thyroid hormone called T4, among others, which it then converts to the active thyroid hormone T3. This is the hormone that actually controls your metabolism. There is also a hormone called reverse T3 (RT3). During prolonged infection, such as chronic Lyme, the body may convert too much T4 to RT3 instead of T3. If the ratio between RT3 and T3 is too low you will gain weight as this is pretty much the same as hypothyroidism. There are other causes for RT3 issues, but chronic infection is one of them.

Parasites

Many people with chronic Lyme, or other chronic illnesses for that matter, have parasitic overgrowth. When they eat a meal the parasites get all the good nutrition from their food and the body is left with crap. Although you may be getting an adequate amount of calories, your body thinks it is starving because it is not getting any of the nutrients. We all know what happens when we go on a restricted calorie diet, or at least we all should know by now. Your body goes into starvation mode and down regulates its metabolism. Now, with a lowered metabolism, your body is not burning as many calories as before but you are still eating the same amount of calories as before which leads to weight gain. In addition, this also causes increased hunger and in some cases people over eat further compounding the problem of the lowered metabolism.

Insulin Resistance

Chronic infection causes insulin resistance. What this means is that the insulin your body is producing is not capable of getting glucose to the cells. More and more insulin is secreted and stored in your fat cells - sort of. This is the extremely abbreviated version. You can read more about insulin resistance here or do a Google search. Just don't believe the lies that you need more grains and/or fiber to fight insulin resistance. That's bologna!

Biotoxins

I don't know that much about biotoxins yet, but have been reading more and came across an interesting article by Dr. James Shaller. In it he says the following:

"Lyme biotoxins disrupt the fat cell system and if not removed cause a type of obesity highly resistant to diet and exercise. The critical Leptin hormone increases and creates a type of bloating, puffiness or abdominal distention that is demoralizing to those trying to have a healthy weight"

I don't think I can add anything to this. To read the entire article click here.

This post was shared on Monday Mania and Freaky Friday.