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Fragile

Wednesday, February 15, 2017

I’m in a mood today. I’m trying to close a real estate deal. I can’t tell if my agent is fighting as hard for me as I expect him to, and I’m trying not to get angry at myself for not realizing a mistake yesterday that has impacted the deal.

Real estate transactions, just like so many other things in life are fragile.

My personal plans for the future have also felt fragile for the last several months. I decided to go back on antibiotics after years of having complete control over my Lyme treatment (through the coil machine) for over 5 years. The drugs zapped me of my energy, my desire to get out of bed, my ability to imagine a future, even my ability to think. So for 6 weeks of iv doxycycline, my future seemed fragile. It seemed that the reason for taking the drugs, to quiet down the infections and give myself a chance to try to get pregnant, was foolish. I could barely stand, walk, talk, eat, sleep, knit, read, watch tv, by the end of the third week. Adding a child to the mix seemed like the worst idea possible. I couldn’t remember a time when I felt any better than I did in the moment, and I couldn’t imagine a time when I would stop feeling so bad.

Then the PICC (peripherally inserted central catheter) stopped working. I used the PICC, a tube that went from a hole in my arm to a vein near my heart, to deliver doxycycline and other drugs. When it stopped allowing fluid to enter, I discovered that PICCs are also fragile. I had to have it removed because the end in my chest was no longer near my heart. Within days, my mind cleared up.

I had a chance to decide whether I wanted to continue with antibiotics. At first, I was ready to give it all up and go back to my trusty coil machine. My husband gave me plenty of space to talk through my options without putting any pressure on me to decide. It was exactly the right kind of support for him to give me.  Then I called my sister. She gave me the kind of perspective I cherish. She reminded me that this time last year, I thought I was near the end of these illnesses. I felt quite well. All I wanted was to have a baby and begin working. After a hard year, those dreams seemed out of reach, but my sister said that if I got myself well again using the coil machine, I’d be six months or two years older and kicking myself for not seeing things through with the antibiotics, because my dreams and goals would be just out of reach again.

So I pulled myself together, got another PICC and suffered through some more doxycycline. Then my digestive tract stopped working altogether. I could barely eat and what I did get in came out within the hour. I had to stop the drug. It turns out my digestive tract is fragile, too.

I called my doctor, took another week off all drugs, and this time came up with a new combination that I tolerate better. The first week on it was hard. I’m now a few days into the second week. The herx is the same as it was when I was coiling this time last year (kidneys, insomnia, night sweats, headaches). More importantly, I’ve been able to think and feel and not spend all my time on the couch in a daze. Thus, I’m finally able to write a blog and get back to living.

This is not to say that I’m as well as I was last February, I’m still struggling on all the drugs and have infection symptoms on top of the herxes. However, when I was well last May, and I was sure I’d be well this February, I signed up for a writers conference. The day after I stopped the doxycycline for the last time, I discovered that the conference was in three weeks (tomorrow compared to the day I’m writing this post).

That’s when I discovered how fragile my ego is. I had plans, last May, plans that didn’t include two relapses in the summer and autumn, plans to type up and revise a science fiction novel I’d completed using pen and paper. I expected to have a draft in case I connected with an agent or editor at the conference. I almost signed up for the opportunity to pitch my book to several agents and editors at the conference. But I decided against it, hoping I might have a deal already.

It’s humorous now, looking back three weeks when I felt like a fraud for thinking I could ever get anything finished, never mind published. In the intervening time, I’ve gotten well enough to attend at least part of the conference, assuming I sleep in and leave early each day. I’ll have to do the iv infusions in the morning and evening while I’m enjoying some quiet time. I’m planning my food and supplements carefully.

Yesterday, I spent several hours designing business cards to print at home. To say I’m satisfied with how they came out would be missing the point. As I wrote the cards, I kept changing the content, wanting to include something beyond my contact information. I decided to write down the type of literature of which I have drafts on my computer (or have printed limited runs for my family). I was able to see that despite my difficulties, I have composed several short stories, kids stories, a sci-fi novel, part of a memoir, part of a how-to book (about coil machines, of course), and this blog. The process helped me to rebuild my fragile ego in preparation for my first professional activity since I was felled by Lyme Disease in February 2007.

There’s always more, of course. Although I’ve primarily focused this blog on the coil machine, I have two things I’m working on. One is a resource on the practicalities of PICC lines and long-term antibiotics. The other is about environmental training, a piece of the puzzle that is overlooked for chronic infections and autoimmune disorders.

For now, I’m headed to a conference, planning out the next part of my treatment, and coming up with new ideas for how to live better with Lyme Disease.

Disclaimer

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Overcoming Obstacles

Thursday, December 8, 2016

I got a PICC this week. The process of working with an LLMD and transitioning back to antibiotics has been fraught with logistical obstacles and strong emotions. But before I get to those, I once again learned the lesson that I can get well enough to function for a short time (2-3 weeks) but that it takes a long time to recover after I’ve been active.

A bit of travel

My mother wanted to go to Italy for a canonization ceremony, basically endowing sainthood on a catholic who has died and generated verified miracles, and it worked out that I would accompany her. In theory, this was a good idea. But I wasn’t well in the weeks before the trip. I’d had a bad reaction to some antibiotics I’d taken and was off all treatments for a few weeks. I had barely enough time to use the coil machine to get my symptoms down to a level where I could do something for part of each day. I made a plan for the trip: a TCM herbal formula, a bunch of antioxidants, some pain killers, and artemisia.

When we arrived, I started the TCM herbs (some pills, some powders). I rested and felt grateful that at 81 my mother can travel and that she prefers a slower paced itinerary. I herxed for a few days, especially with pain in my kidneys and trouble with my bowels, but I had energy thanks to the artemisia. We participated in some group activities with nuns who were celebrating that the founder of their order had become a saint. But we also took time to head back to our lodgings and rest.

I had some troubles in Italy, particularly with my feel swelling up, fatigue returning after the first week, and an increasing pain level. But I hung in there. The combination of supplements I took wasn’t designed to keep me well long term or to help me make another strike against the infections. It was just to keep me going for a few weeks.

Before returning home, I stayed with my mother and the rest of my family for a week. Daily naps were a necessity to participate in the Halloween festivities with my nephew and niece. But by the time I left, I was about to crash.

Test Results

When I returned home, I went back to the coil machine for a week. I had finished the TCM formulas, and the artemisia had stopped working. I was a little surprised that I herxed right away as I coiled for all three infections: Lyme, Bartonella, and Babesia. I had headaches, joint pain, bowel problems, sleep problems, night sweats, kidney pain, etc. I felt strongly that the months I’d spent on Alfons Ven remedies had allowed the infections to make progress against my body.

After a week, I had an appointment with my LLMD. The results included some surprises and some confirmations of things I’d believed all along. I had positive tests for Lyme (as expected), my first positive test for Bartonella, my first positive test for Babesia (direct test, not antibody). The Bartonella test was confirmation of what I’d believed all along after a series of ambiguous results and had seen evidence of through herxing after coiling with the appropriate frequency. The Babesia test was not exactly a surprise, but it was unpleasant to acknowledge what I already knew from the migraines, fatigue, and nightsweats: the Babesia infection is active.

Then there was news that was helpful. I had positive tests for Chlamydia pneumonia and Mycoplasma pneumonia. (I had weak positive tests back in 2008.) These two infections would explain why I’d been having recurring bronchial inflammation as I whittled down the Bartonella infection. I have experienced what another user of a coil machine told me early on–as each infection gets weak, another infection it was suppressing gets more active. If I were still using the coil machine, I’d begin working on these infections, even if I didn’t herx from them.

I’m still positive for Epstein Barr (high enough titers to consider an active infection). It is at the bottom of the list to treat because when the other infections are in check, the immune system can deal with EBV without assistance.

The biggest surprise was that I tested positive for relapsing fever caused by a borrelia genus bacterium. In my mind, this was the missing infection that I couldn’t treat because I didn’t know it was there.

The good news is that many of these infections can be treated with the same antibiotics as I would take for Lyme and Bartonella. The bad news is that I have a lot of infections to deal with.

Treatment Plan

When my LLMD and I went through the list, she told me I had two options. I could continue to self-treat. She could in no way advise me there, but she was happy to have helped me fill in the missing diagnostic information. If I were to self-treat, she would advise against pregnancy.

The second alternative was to go down the allopathic route, again. It would entail oral treatments for Babesia and intravenous treatments for all the other infections (except EBV). She told me that Babesia causes miscarriages, and that we should try to get rid of it, if possible, before I try to get pregnant. She thinks it is possible to get rid of it, beyond the kinds of remissions I’ve had with the coil machine and others have had with drugs. But she cautioned that there is no way to guarantee that it is gone rather than in remission. I asked why the drugs would work this time, since they clearly hadn’t when I treated Babesia for 2 years. She said that compared to my last LLMD and the information he had available 6 years ago, she will be much more aggressive in the treatment. I decided to get started.

I had imagined I would need intravenous antibiotics. I was hoping to use butterfly needles rather than a PICC, like I did in 2010. My LLMD was very clear with me that I needed higher doses of ceftriaxone than before, as well as other drugs that cannot be delivered through a butterfly needle. She explained how to get well enough, and to knock down the infections enough, to be able to have a healthy pregnancy. At the same time, she told me up front that I would still need to take oral antibiotics during the pregnancy because it is almost impossible to be sure that the infections will not reactivate. She gave me statistics from Lyme pregnancy registries that helped me realize she was right.

I couldn’t agree to the PICC when I was sitting in her office. She gave me some written information and told me to call in a week with questions and/or my decision about whether or not to go forward.

On the way home in the car, I cried. I cried for the years of my life that I’ve lost to this illness. I cried for the money spent on treatments that barely made a dent and for the lost earnings. I cried because it is scary to go back on all the drugs that made me feel even sicker before. I cried because I don’t want to be sick for the rest of my life. I cried because it seemed so easy to give up, right there in that moment, on having a child. I cried and freaked out. And when I was done, I listened to my husband’s reaction to the doctor visit. He told me that I was under no obligation to go forward with the treatment or anything else. He knew that even with all the treatment in the world, there was no guarantee that I can get pregnant at my age (and we’ve already decided not to use assisted reproduction because my body has been through too much already). But he also said that if there was a real possibility that I could get well, he would consider the treatments to be worth it.

He settled my emotions for the night. I needed another day and a few conversations with my family and friends to realize that I’m ready to take another swing at these infections. I’m stronger than I was when I stopped taking antibiotics. My body will be able to do much of the work, rather than relying completely on the antibiotics to get rid of the infections. Even if things get worse for a while, I have a real chance at pursuing my many dreams and goals.

Side Note on Antibiotics

I pondered for a long time on why antibiotics work for some people and not for others. I have multiple theories. When it comes to the few NIH studies, the fact that co-infections were not considered might explain why people felt better on antibiotics, though not fully improved, and that in the absence of antibiotics, there bodies were overwhelmed by the multiple infections again.

Then there is some of the reading I’ve done on the internet by LLMDs who have had the guts to put out their thinking and educate patients and families for free. It looks like some of the treatments being used for quite a while weren’t strong enough to overcome the fact that the patients had poorly functioning immune systems. Stronger doses. Multi-pronged attacks. Longer protocols. Maybe, all together, these things can compensate for faulty immune function.

I knew, at some point, that my immune system came back online, during the second or third year of coiling. I got a cold. A bona fide cold. One that came, knocked me out, gave me a fever, then left without additional assistance from drugs (or coiling). I celebrated it, not because I wanted to feel sick, but because it was an important step in reclaiming by my body from the tick-borne infections.

I read, long ago, that antibiotics increase the body’s ability to resist infection by 30%. Although I can’t find a source for this, the idea was one that an immunologist friend of mine agreed with. If one side of a centuries long fight increases its strength by 30%, the war changes. Fewer people die from previously fatal bacterial illnesses. Some still do, especially people with weakened immune systems. The microbial community continues to find ways around our new weapon (think antibiotic resistance), but understanding the principal behind the contribution of antibiotics might help us understand why they take so long to work in patients with chronic infections.

What we know about chronic Lyme Disease and several of the other tick-borne infections is that over time, they hi-jack our immune systems to prevent our immune systems from attacking or eliminating them. In a patient who has been infected for 7 years, like I was when I got diagnosed, the antibiotics are the only line of defense. That isn’t how antibiotics have been used effectively. They work when they provide a boost to an already functioning immune system.

What this means for many patients is that boosting their immune system (or redirecting its functions to include fighting chronic tick-borne infections) might be required as part of antibiotic therapy. It’s nice to take reishi or other immune system modulators, but those are not strong enough to reboot a person’s immune system.

When I wondered what was different now, as I try many of the same antibiotics as before, the answer I came up with is that I am different. The coil machine reduced my infection load (without the assistance of my immune system) enough to allow my immune system to function again. This time, the antibiotics are there in conjunction with a functioning immune system, rather than doing the work alone.

Obstacles

Once I got on board with doing the full treatment plan, I started looking at the cost. In the crazy way that healthcare operates, almost nothing I will use is covered, and certainly not without months of appeals. Instead I’m hunting on GoodRx.com for the best deal for the oral and injectable drugs, and using a mail order pharmacy for the iv drugs. I paid for the PICC insertion out of pocket.

Nothing is cheap. As my LLMD lamented with me on the cost of a PICC or using an infusion center, I had to try not to laugh because she’s incredibly expensive, too. But once my husband and I figured out how to pay for it all, I had other things to work out.

Like what? Drug allergies. I had a list that was way too long. There was a member of the 4-drug combo that sent me to the ER in September. Only, I didn’t know which one it was. I also had reactions to several drugs, including ceftriaxone that needed to be evaluated before I got started with a PICC line.

The main thing I learned from the allergist is that I have vasovagal reactions to needles and pain. I already knew that menstrual cramps could trigger a vasovagal reponse (Surviving Vagus), so could urgent bowel movements. What I didn’t realize is that the tired, woozy feeling I sometimes get from blood draws, or the massive drop in blood pressure I used to have with iv ceftriaxone through a butterfly needle were also vasovagal responses. I got to cross off several drugs from the list (some that we actually tested and the rest as a result of this finding). Then we tested two of the drugs I’m going to use and I was good to go. (The drugs that cause rashes are still on the list but not retested at this time.)

The next problem was that once I had the PICC line in, it didn’t work quite right, right away. The nurse fixed it, but then the same problem occurred at home. This led to a round of phone calls to my doctor, the PICC insertion company, and the local infusion center. It also led to a day of near panic (probably unwarranted, but I’m not used to having a one end of a catheter sticking out of an open wound in my arm and the other end right near my heart). Once that was resolved, I could pay attention to the fact that I had a dermal reaction to the antiseptic solution the nurse used on my arm when he inserted the catheter and applied the dressing. Topical cortisone worked for the skin not under the dressing. Changing the dressing using a different antiseptic generated some relief. But this morning, I’d had enough. It was time for some oral antihistamines to calm the inflammation.

I’ve finally started the intravenous antibiotics. I’m less stressed by anticipation and all the challenges I’ve already faced. My mind is clearer. I’m ready to get back into the swing of things and handle the pile on my desk, my email inbox, my Christmas list, and the rest of my life.

Disclaimer

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Transition Zone

Thursday, October 13, 2016

It’s been over a month since I stopped the Alfons Ven remedies. I had a plan, once I stopped, to see a doctor and go on antibiotics for a while. I had a plan, you see, because I’m as well as I expect to get before my ovaries stop producing eggs. So I’d like to try to get pregnant, but I’d like to do so without infecting my husband or a baby with tick-borne diseases.

There are grim statistics about being pregnant with tick-borne infections. Without antibiotics, the transmission rate is estimated at 50%. With a two-antibiotic combination, the rate goes down to less than 1%. Meanwhile, there are a few studies that suggest that Lyme and the other tick-borne infections can be sexually transmitted. I’d rather be safe than sorry.

Now, back to my plan. The plan was to get as well as possible on the Alfons Ven remedies, in the hopes that I could minimize the amount of antibiotics I needed to take to keep the infections in check. Instead, I had a Lyme flare which the Ven remedies did nothing to reduce, which triggered Babesia and Bartonella flares, so I began my doctor search with more symptoms than I’ve had in the past three years. At the same time, my coil machine broke (specifically the amplifier, which can be fixed by any appropriate audio equipment dealer), meaning that I couldn’t coil to get everything under control. Before it broke, I got to coil for about a week, just enough time to reduce my pain level and the Babesia fatigue–temporarily. Enter traditional chinese medicine. I took a formula to keep me going while I searched for a doctor.

Doctor Search

I started with the recommendations from the local Lyme Disease support group. That didn’t work out quite as well as I hoped. The first doctor (an internist who takes insurance) looked at my history, said I needed iv antibiotics for 3-4 months followed by hyperbaric oxygen, then I could skip antibiotics for the pregnancy. As soon as he finished his pronouncement, he said that he couldn’t treat Lyme patients for a few years because the insurance company of a patient who went into remission on iv antibiotics brought him before the state medical board. Now he cannot prescribe antibiotics for Lyme patients. He can only refer them to other doctors. I was a little relieved because his plan for me didn’t seem quite right.

The doctor he referred me to was also on the list from the Lyme Disease support group. He is an infectious disease doctor who also likes to give iv antibiotics, though never for longer than 28 days. His office was a nightmare. The medical assistant made one sexist comment after another. (Before I left I told him that he was a lawsuit waiting to happen.) The doctor insisted on looking at all my labs from the past ten years…and fell asleep doing so. He nodded off five or six times and I had to keep waking him up. He was less interested in my infections and more interested in my hormone levels, just to make sure I could get pregnant after a diagnosis of PCOS several years back. I’m no longer symptomatic of PCOS, but that didn’t reduce his interest in the topic.

After these two appointments, I contacted the Lyme Global Alliance for a list of ILADS doctors within driving distance of where I live. The downside to these doctors is that they don’t take insurance and are extremely expensive. I called around and talked to the staff while checking on my notes about what the people I’ve met at my support group have said about the various doctors in the South Bay (south of San Francisco). I picked one. She’s knowledgeable, competent, a good listener, and not freaked out that I’ve been using a coil machine. We came up with a diagnosis and treatment plan and have started moving forward.

Restarting with an LLMD

I’ve been able to control my own symptoms and control my own treatment for five and a half years. It’s hard to give up control. It’s hard to go back to antibiotics, tests not covered by insurance, side effects, and other tribulations.

Understandably, the doctor wants to retest me and see what I’ve got growing in my body right now. She wants to take a fresh look, checking for things that no one bothered to look for the first time around. She thinks we missed something. Frankly, I’ve been wondering for two years if I had an undiagnosed infection, one that prevents me from getting to the end of Bartonella with the coil machine. It was comforting that she came to the same conclusion I’ve come to without me bringing it up.

Not so comforting is taking a short course of a combination of antibiotics, just to kick up my immune response, before taking the blood tests. I saw five years of rebuilding my gut flora go down the toilet in less than a week. Oh well. I didn’t end up taking the full course of antibiotics because I discovered that I was allergic to one of them. After a trip to the emergency room and several days on benedryl, I eventually started to notice the Lyme symptoms coming back.

Now the tests are over. But I won’t start the longer term, pregnancy-safe antibiotics until the doctor gets the test results. We may even do a course or two of iv antibiotics to get rid of most of the neurological symptoms (and quiet the active infections) before starting the pregnancy-safe antibiotics. In the meantime, my coil machine is fixed. I got to coil for a week before I go on a trip to visit my family. So I’m back to TCM herbs, with the addition of artemesinin for a Babesia flare.

I’m still pretty symptomatic. This transition plan is not going quite as well as I’d like, but I’m able to get up, most days, and do at least one thing. On good days, I can do more.

In a few weeks, when I’m back home, I’ll go back to coiling and see how many of the symptoms I can clear up before beginning antibiotics.

Disclaimer

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Alfons Ven Lyme Package Redux

Monday, September 12, 2016

After six months using the Alfons Ven Lyme Package, I’ve learned a lot about how it worked on me and what its limits were. The first four months, I saw big improvements. The last two months, I seemed to get worse, as if the formula wasn’t strong enough to combat the infections.

I am aware that some other people who have taken it decided it didn’t work at some point, but kept going an saw improvement again later. I decided not to continue with the Ven remedies for a variety of reasons, some related to the effectiveness, and some related to other plans I have.

The big question I get by email is whether other people should try it. I don’t have a definitive answer. As best as I can tell, it was helpful at first. I think it stimulates and heals the immune system. However, even with a strong immune system, I am unable to overcome the tick-borne illnesses I’ve had for fifteen years. An improved immune system gave me an initial boost against the infections, which, I believe, gave me herxes and reduced symptoms for several months. However, my immune system, no matter how strong, cannot make progress against these infections (as I know from various other immune system boosting supplements I’ve taken in the past) without an external microbicide (such as a coil machine, antibiotics, TCM herbal formulas, etc.). For people who have had a tick-bite more recently and have finished antibiotics, I can say only that CHIM won’t hurt. It might not change your chances of getting a chronic infection, but it might help your body address any other possible issues.

The Basics

The Alfons Ven Lyme Package has two required parts: CHIM and FLUOX. Both of these are generally in the category of homeopathic remedies, but they are not based in classical homeopathy. Alfons Ven developed a different approach to what goes into the pills. There is an additional, non-homeopathic remedy, that I purchased and that the website suggests: AVIVA. I used this intermittently the first month and found that it made no difference for me. I now have several bottles left. I don’t recommend purchasing AVIVA.

CHIM comes as a 28 doses taken in consecutive order, once per day (or less frequently if the die-off symptoms are overwhelming). They are pills made of lactose that dissolve under the tongue or can be swallowed. Whatever is active in them is not chemical. Generally it is recommended to take them at the same time every day, before bed. I support this suggestion, as I had an increase in symptoms, possibly from the die-off, after I took my nightly dose if I didn’t go right to sleep.

FLUOX comes in a 100-dose tube that dispenses one lactose pill at a time. It is taken in the morning, at least 6 hours after CHIM (and 6 hours before the next dose of CHIM). When more than one dose is needed or desired, a second pill can be taken at least 2 hours after the first. No more than three doses should be taken per day. I found that taking three doses a day for more than a few days released stored toxins and made my symptoms worse, rather than clearing them up.

I took FLUOX for about a week before I started CHIM to clear out whatever was already circulating in my body. I took 2 doses of FLUOX most days while I was taking CHIM. When I had heart symptoms, I sometimes went up to 3 doses of FLUOX a day for a few days.

I took six packages of CHIM. In between the last dose of one package and the first dose of the next, I waited 4 to 8 days. During that time, I continued to take FLUOX, 2 to 3 doses per day, to clear out toxins before I began the next series of die-off reactions.

According to the Alfon Ven website, nothing interferes with the remedies. Other medications, other supplements and a normal diet can be taken at the same time. According to the lyme-symptoms.com website (mostly offline at the time I’m writing this post), there are many things to avoid while taking CHIM and FLUOX. Primarily, other chemical agents that kill Lyme (like antibiotics and microbicidal herbs) also tend to put it into a dormant form, making it harder to eradicate. Avoiding such chemicals can allow the CHIM to work more fully. I agree with this idea and avoided other methods for killing infections. Having said that, I see no reason not to take CHIM while on antibiotics to help rebalance the body as long as the herx reactions aren’t too strong.

According to lyme-symptoms.com, using a Rife machine (such as the coil machine I use) will not interfere with CHIM. Rife machines kill the bacteria and other microbes that cause chronic infection without putting them into a dormant form. I did not use the coil machine because I thought the herxes might be overwhelming and because I wanted to see if the Ven remedies worked.

On the other hand, the CHIM gave me strong herx symptoms (kidney pain, diarrhea, heart palpitations, headaches, etc.). I needed assistance for my body to process the toxins. I chose to use herbs and supplements that help clear away toxins but do not have microbicidal properties.

  • Herbs: chanca piedra, milk thistle, dandelion root
  • Supplements: coenzyme Q-10, N-acetylcysteine, magnesium

Expectations

Before I tried the Alfons Ven remedies, I read about them and talked to a few people who have used them or are currently using them. I was simultaneously skeptical and hopeful. One person I corresponded with claimed to be completely cured, as did several testimonials on the Lyme Package website. Since I’ve done several years of antibiotics followed by several years of coiling, I was hoping that the Lyme Package would allow me to cross the finish line. The main problem I was still having before I ordered the remedies came from a Bartonella infection in my central nervous system. I thought, maybe, just maybe, that CHIM would complete the process of either getting rid of the infection or putting it into remission. At first, I guessed that I would need 4 months of the remedy. After consulting with the author of the lyme-symptoms.com website, I thought it would take 5 to 6 months. From the experience of others, I knew that there might be a rough month, but I was assured that the month after the bad one would make things much, much better. I was hopeful.

The skeptical part of me wondered: Are these just sugar pills? Will they do anything at all? The answer was pretty obvious, even after the first dose. I had a strong die-off reaction. So I knew it was doing something. The question then was whether it would be strong enough to get rid of the infections altogether.

Experience

I’ve documented the daily symptoms and experiences of Alfons Ven in the previous seven posts. To give an overview, I had herx reactions from the beginning. They continued throughout the time that I took CHIM. At first, I felt like I was getting better, and that the symptoms seemed mostly like the kind I get with herxes. However, by the time I got to the sixth package of CHIM, I had symptoms that seemed much more like a seasonal flare. Instead of getting better, I felt like I got worse in a short time and that all improvements were erased. It seemed like the seasonal flare, which happens when the infections go into overdrive twice a year, overpowered whatever headway the remedy had made. It was similar to coiling the right frequencies, but not enough: the herx appears but no progress is made.

The interesting aspect of the Ven remedy is that it seemed to treat different infections for a few days to a week at a time over the course of a month. For a while I would have Lyme herx symptoms, such as diarrhea and fatigue. Then I would have Babesia herx symptoms, such as headaches and drenching night sweats. Then I would switch to Bartonella herx symptoms, such as kidney pain and constipation. Then it would switch again, and again, and again. What I couldn’t tell after the first four months, was whether these herx reactions were leading to a whittling away of the infections, or whether the remedy was helping my body play whack-a-mole. By this, I mean that one infection would calm down, but not be reduced past the previous time it was treated. Then when my body was working on the next infection, the first one would get worse again. When I went back to the first, I was herxing, just to get back to where I was the last time I herxed.

It seemed to me that I was going in circles, rather than going forward, when it came to making progress on the infections. Furthermore, as the months went by, I experienced brain fog more often and more intensely.

Separately, however, I think CHIM helped to heal my hormonal and immune systems. My menstrual cycle went through two changes until I stopped needing the supplement that I took for years to keep it regular. My immune system seemed to respond to the external environment more appropriately, until the seasonal Lyme flare (which triggered flares of Babesia and Bartonella).

Comparison to other treatments

There are some benefits to taking the Alfons Ven treatments, compared to many of the other treatments out there.

  1. I didn’t have to know what infections I had for CHIM to work. Unlike a coil machine, which requires identifying the infections I want to treat, picking the appropriate frequencies, and irradiating the parts of the body where they grow, CHIM attacks everything. Antibiotics and many anti-microbial herbs also have effectiveness on some infections and not others or are effective on certain bodily systems (e.g., joints vs nervous system), so many agents need to be taken to cover multiple infections. Traditional Chinese Medicine herbal formulas must also change over time to cover the changes in symptoms as the infections or healing process progress.
  2. CHIM helps heal the body’s repair mechanisms and other systems. A coil machine kills of the infections but leaves the body to do the clean up and self-repair (notwithstanding some frequencies that purportedly assist the process but that I haven’t experienced firsthand). Antibiotics and some anti-microbial herbs can damage the body’s repair mechanisms and cause other damaging side effects to the gut and other systems. Traditional Chinese Medicine formulas tend to help with both the infections and rebalancing the body.
  3. CHIM has no side effects. The quantity of lactose is so small that it doesn’t actually need to be digested to pass through the body (less than 12 grams over 28 days). According to the Alfons Ven website, it is safe for people with lactose intolerance. The coil machine also has no side effects. Other chemically based treatments (antibiotics, anti-microbial herbs, TCM formulas) tend to have additional effects on the body besides the intended ones.
  4. CHIM and FLUOX are portable and easy to consume. The Ven remedies don’t require a change in diet, or a complicated schedule for taking them. The coil machine requires a lot of time on a daily basis and is to large to bring when I travel. Antibiotics do best when used with a low-carbohydrate diet to prevent candida infections. IV antibiotics require time to dispense them. Unlike some TCM and other herbal formulas, Ven remedies don’t taste bad.

Despite these benefits, there was a major drawback: the Ven remedies weren’t strong enough to tackle chronic infections. I can’t overstate the importance of this problem. Compared to coiling for the infections I’ve discussed, I felt that I lost ground, rather than gained ground, while taking CHIM. In many ways, the Ven remedies reminded me of oral antibiotics and some of the herbal combinations I’ve taken before. They work initially, providing a real benefit, but, over time, they lose potency compared to the infections. The only antibiotics that seemed stronger than CHIM in their ability to reduce symptoms and kill the infection longer term were intravenous antibiotics.

There is one additional aspect of the Ven remedies worth noting. CHIM does not suppress the infections. In this way, it is similar to using a coil machine and different from the various chemical methods of fighting chronic tick-borne infections. The advantage is that it doesn’t leave an unquantified reservoir of dormant bacteria that can come roaring back later. The disadvantage is that I stayed symptomatic even during the initial progress against the infections.

Would I use CHIM again?

Or maybe the question is: why did I stop? I stopped because I gave myself a timeline to see how it works. If I could do it all over again, I might have stopped after 4 months (now that I know that was the peak benefit) or I might have continued for the full six months while also using a coil machine.

I can say for sure that I would not take CHIM as my sole treatment for chronic tick-borne infections for any extended time in the future. If however, I needed to be away from the coil machine for a month, I would consider CHIM to be an acceptable short-term alternative, the way I have used Traditional Chinese Medicine formulas in the past two years.

On the other hand, given the benefits of CHIM in helping with other bodily systems, I would consider using it concomitantly with the coil machine, coiling for the infections that CHIM is not addressing at a given time or tackling one infection with the machine and using CHIM to cover the rest of the bases.

Disclaimer

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The Sixth Package & A Seasonal Lyme Flare

Monday, September 5, 2016

I finished my sixth and last package of CHIM, an Alfons Ven remedy. It was a complicated month because I had my seasonal Lyme flare early. I guess I expected it to be less intense than last year after 6 more months of coiling and six months of CHIM. But it was uglier than the past few years. I’ve spent the past week unpacking what happened (and unpacking my coil machine to start using it again).

As usual, I’ll start with an run-down of my symptoms during the treatment. The next topic is supplements, which I spent a lot of time tinkering with during the first two weeks of the package. From there, I’ll go on to explain why I think the seasonal flare was worse, though I can’t explain why it was early. (Climate change? The effects of the Ven remedy on my body? I don’t know. In fact, if you’re experiencing a seasonal Lyme flare now, or started to feel your symptoms get worse in the past 2-3 weeks, please comment below or send me a message telling me the date the flare started.)

The Sixth Package of CHIM

I started the sixth package of CHIM, 1 dose each nigh, along with two morning doses of FLUOX, spaced 2 hours apart, on July 31. That night I had insomnia and lots of twitching (which I wrote about in the previous post). Something about the experience made me realize that in addition to whatever else was going on, I might be inundated with unprocessed toxins from the previous five months. The next day I had a lot of rib pain (Lyme symptom) and kidney pain (Bartonella herx symptom) and I knew something had to change. I started by taking extra detox agents (an extra dose of chanca piedra and some dandelion root tea). It helped with those sympoms, but I still spent a big chunk of the day feeling unable to focus on anything and with a big headache. The next day, I added in N-acetylcysteine (1200mg in the morning). This helped, but not enough. I still had lots of  twitching, pain in my sacrum, muscle spasms, night sweats, insomnia, etc. The next day I doubled my NAC to twice a day, and increased the magnesium dose I was already taking to 1200mg per day. I stayed on this dosage for the rest of the package.

The supplements were helpful. Although I spent the day with aches and pains everywhere, the kidney pain calmed down. I was able to sleep at night and I had no night sweat. The kidney pain came back the next day, and I was able to work a little, but I got very tired very quickly. I was done for the day by 5pm, and just rested until bedtime. I had a light night sweat that night, as well as waking up overheated.

I moved into possible PMS with two days of fatigue, loose bowels, big night sweats, kidney pain, and back pain. Then my menstrual cycle started with mild to moderate cramps, no appetite, a severe headache, and more night sweats. This ended my first week of the CHIM package.

Although I have a note from day 14 of CHIM that says “feels like autumn Lyme flare is starting early,” the week leading up to that statement was very symptomatic. The daily issues included loose bowels, fatigue, slow thinking and difficulty getting started doing anything, twitching, insomnia and night sweats. Each day, I managed to do one thing, maybe a walk or some cooking or an hour on the computer. Mostly I sat, I knitted a bit, and the days marched on.

August 12 (that night I took CHIM dose 13) was a culmination. I woke up with itchy eyes, then I had a few things to do. At 4pm, I lay down for a moment which immediately turned into a three hour nap. When I woke up, my pain level was very, very high. Everything hurt: all muscles, all joints, head, neck, abdomen. I had a hard time going to sleep that night and woke up repeatedly. The next day, everything hurt all over my body, again, only now, my spine was terribly stiff. I had loose bowels and a bad mood.

By August 14, my heart was in on the action. I had palpitations and pain in my chest, climbing up into the left side of my neck and throat. When I listened to my heart (with a stethoscope), my heart was galloping on the second beat and very irregular. I had tingling in my arms when I lay down to rest. Some of the other aches and pains were less, but I still felt out of sorts.

For the next several days, I felt like I was slogging through my daily activities (and inactivities). The chest pain was persistent, though it varied in intensity. My bowels were loose and urgent, multiple times a day (even when I reduced the magnesium dose for a day or two). I had twitching intermittently. I woke up hot at night, sometimes sweaty, sometimes not. And I had very little appetite.

Doesn’t that sound like the perfect time to go camping? My husband, Joe, had arranged for us to go camping for our wedding anniversary. I decided that if I had to feel crappy, I’d rather do it in a beautiful natural environment than moping at home. On the trip, I was tired much of the time. The best part of it was sitting at the campsite, watching osprey and bald eagle pairs fish for trout in a lake.

On the trip, I continued to have loose stools, low appetite, heart pain, kidney pain, back pain, and rib pain. One of the driving days, I had a mild vagal response while in the car, waiting to get to a place where I could use a toilet. (Urgent bowel movements have previously triggered vagal responses, from mild to syncope.) My feet swelled up, and by day 19 of CHIM, I had “plum pit chi,” a feeling like there is something stuck in my throat when there is nothing there. On day 20 of CHIM, I took a nap and was overwhelmed when I woke up by how much pain I was in all over my body, just like had happened a week earlier. (Maybe the moral of the story is no more naps?)

Back home, the situation was the same: heart pain, loose stools, headaches, extreme fatigue, feeling achy all over, night heats or sweats. Now I had a new daily problems, air hunger (or shortness of breath) and tingling, buzzing feelings in my limbs, bronchial irritation, and stiffness in my back and hips. What had at first felt like a Lyme flare had blossomed into a Babesia flare and a Bartonella flare. At least, that’s how it felt. The twitching continued, usually at night, and for a few days, I had yellow mucus coming out of my sinuses.

By the time I got to day 27, Bartonella seemed to be ascending, with pain in my ear canals and a switch to difficult, hard bowel movements, and abdominal swelling. I felt too hot or too cold all the time. After the last dose, I woke up with pain on the right side of my body. It is a dull ache that hasn’t yet gone away (and is noticeably absent from the left side of my body, where the pain has focal points).

The entire month, I had abdominal swelling after almost every meal.

I’ve continued the FLUOX, three times a day for the three days following the end of the CHIM package, and 2 doses a day since then.

Combining Alfons Ven remedies with other supplements

One of the things I hoped was that the Alfons Ven remedies would provide a complete detox action, and that no other supplements would be necessary. This turned out not to be the case. A major issue I have with anything that attacks Bartonella is that I get severe pain in my kidneys. From the first package, I realized that I needed to continue to take herbs that help the kidneys and liver survive big detoxes. For me those include milk thistle, chanca piedra, and dandelion root. For most of the months those were sufficient. At the end of the fifth month, the kidney pain was getting worse again. I felt like the toxins from herxing both Bartonella and Lyme was accumulating faster than my body could flush. I wanted to be careful not to add lots of other supplements willy-nilly, so I went through my old list of what helps and read up on my options.

N-acetylcysteine (NAC) and coenzyme Q-10 were my choices. NAC helps the body produce more glutathione, a master antioxidant that protects the liver. Coenzyme Q-10 is also synthesized by the body. I chose it primarily because it helps with the heart, and I was having heart trouble.

My general understanding of the Alfons Ven remedies is that CHIM’s microbicidal action can be blocked by antibiotics as well as antimicrobial herbs and supplements. Thus, I avoided those kinds of supplements. FLUOX works to help the body move toxins through the detox channels, and at higher doses, to move stored toxins back into the blood stream to be processed and removed. However, it doesn’t make the detox process more efficient or protect the organs from an overload of toxins. Thus, it seemed okay to me to take some supplements in support of detoxing.

Also this month, I ended up increasing the dose of magnesium I was taking. Between the twitching (which I wrote about in the previous post) and the increasing heart pain, I knew my body was blowing through magnesium. Since this mineral doesn’t kill or stress any of the infections, I felt is was safe to take.

Seasonal Lyme Flare

I didn’t realize that the seasonal Lyme flare would be the big test for the Alfons Ven remedies. I had fantasized for five months that I would somehow miss the seasonal flare, and that’s how I would know I was at the end. Alas, that fantasy proved to be no more than wishful thinking.

This seasonal Lyme flare was much worse, MUCH WORSE, than other seasonal flares for the past few years. There are a few reason for the difference:

  1. Usually during a Lyme flare, I stop all treatment except for Lyme coiling. I coil a lot (like 3 hours a day) for Lyme for about 5 days. At the end of the five days, I’m usually down to barely noticeable symptoms. Then I can get back to whatever other infections I was coiling, while putting Lyme back into the rotation every other or every third day. Within a few weeks, the Lyme is usually back in remission or at least at very low levels.
  2. When I don’t get a Lyme flare under control right away, Babesia wakes up. This time, since I wanted to see how the Ven remedies handled the Lyme flare, I didn’t coil for Lyme. The CHIM did not get the Lyme under control. Soon I was dealing with a flare in symptoms from both Lyme and Babesia. (Nothing like light triggered headaches and an extreme desire to be horizontal to make a Lyme flare worse.)
  3. Once both the Lyme and Babesia were awake, Bartonella got worse. The CHIM did not get either of the first two infections to calm down. I was having Bartonella herxes, but I was also having more frequent Bartonella symptoms, including the pain on the right side of my body and tingling in my extremities.

By the time I finished the last package of CHIM, I was no longer impressed with the Ven remedies. At first I figured I hadn’t lost ground, even if they didn’t get me as far as I was hoping they would. Now I’m less certain that I haven’t gotten worse by taking them.

In the future, if I ever consider the Alfons Ven remedies again, I will coil while I’m taking them.

Disclaimer

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The Fifth Package: Renewed Challenges

Monday, August 1, 2016

Last Monday, I finished my fifth 28-day package of CHIM, part of the Alfons Ven remedies program I’m using. I had high hopes when I started the package because I fared reasonably well during the fourth package. Instead, I had a very difficult time. I felt like the CHIM was peeling back another layer of illness for me to grapple with. At times it was confusing, and I wondered if it made sense to keep taking the Ven remedies. At other times, I could see that unexpected things changed and not everything was worse.

As of last night (Sunday night), I started my sixth Ven package. This is going to be the last one for now as I have some other plans for the fall. My current feeling is that to get to the end of these tick-borne illnesses, I would need another year of the Ven remedies. Like so many other attempts to regain my health, this is not a quick fix. It is a way to tilt the long-running battle between my body and the infections in my favor. The movie The Imitation Game comes to mind. If I try to trick the infections, they find a way around my solution (e.g. antibiotics and antimicrobial herbal remedies leading to a store of dormant microbes waiting to reactivate). If I tilt the balance in my favor (e.g. coiling, Ven remedies), I will eventually win, but it may take a long time and involve many casualties on both sides.

The topics on my mind today are: a report of the symptoms over the course of the month, notes about weight gain and Bartonella, and a drastic change in my menstrual cycle.

CHIM Month 5

I started the fifth package of CHIM on June 28th. I took one dose each night for 28 consecutive nights, not waiting more than a day between doses. Each morning, I took 2 doses of FLUOX, one pill per dose, at least two hours apart from each other. I didn’t skip any days because most nights, by the time I was ready for the next CHIM dose, most of my major symptoms were minimal or temporarily gone.

This month was marked by daily kidney pain. Some days it was moderate, some days it was severe. Some days it lasted only 2 hours, some days it lasted upwards of 10 hours, but the trend across the month was increasing kidney pain. As a result of the kidney pain, I stopped taking daily Advil, which I had been doing for quite a while to deal with bursitis in my right heel (and higher doses when I was traveling for overall pain management). I thought the Advil was adding extra work for my liver and kidneys which were clearly overworked from Bartonella herxes. (In the past, when I coiled for Bartonella, that was coincident with kidney pain. More on that below.)

This month was also marked by fatigue, at a level that was much higher than the previous CHIM package. In the first week, I was able to work a little on the computer, go for a walk in the neighborhood, do some light housework, then crash for a nap in the afternoon, needing to rest during the evening. By Day 9, I got more tired. After that, I found it harder to concentrate or motivate myself. I fought with myself to continue personal projects with external deadlines, including the blog I posted on Day 15.  I made myself go outside whenever I had an ounce of energy. But frankly, I felt very stuck because battling the fatigue to try to live today feels just as bad as it did when I was disabled in other ways. In earlier years of this illness, the other disabilities gave me enough of an excuse that I could let myself rest. Eventually this month, I gave in to the fatigue and spent a lot of mornings and evening reading, while attempting to be active (computer work/light housework)  for 3-4 hours in the middle of the day with several 15 minute rest breaks.

There was a new symptom this month, one that I haven’t had since I got Lyme Disease. I had the feeling of electric shocks in my legs and arms, a feeling that would cause strong muscle contractions. These are called myoclonus (translation from Latin: muscle jerks). Most of the time, I could feel tension building in a spot on my thigh (or calf or upper arm or back or neck), then it would get really intense and cause a muscle convulsion (twitch doesn’t describe the severity of the action). The convulsions were painful. The first time was after I took my CHIM dose on Day 10. My legs twitched with increasing pain for 15-20 minutes. But then it stopped and I was able to sleep. This happened again on Days 15 and 22. Over the next few days, I noticed increased constipation and a series of muscle knots in my back and buttocks. Then I had 40 twitches in a row in the half hour after I took my CHIM dose on Day 25.

The next morning, I looked up twitching, found the name myoclonus, and researched possible causes for the symptom as well as treatments. Some causes include neurological diseases, seratonin imbalances, reactions to certain medications, exposure to neurotoxins, all of which relate to the neurological cause of contractions, and magnesium or other metabolic deficiencies, for the muscle half of the equation. There is a medical journal paper on the presence of myoclonus in a patient with Bartonella. That was a key clue for me. The treatments include many anti-convulsant drugs of the types used for epilepsy as well as psychiatric drugs that modulate seratonin. I wasn’t interested in these. But I was interested in magnesium since Bartonella often depletes my body’s magnesium, worsening constipation and causing muscle pain and stiffness, which I happened to notice at the same time.

The next night, when another long series of myoclonus kept me awake, I got up and took 250 mg of magnesium citrate and an Advil, since my muscles were in a lot of pain after all the convulsions. I fell asleep as soon as they kicked in. For the next several days, I took extra magnesium in the morning and that was enough to get rid of the muscle knots. However, I still needed nighttime magnesium to avoid twitches, even though they were milder and there were fewer of them after I finished the CHIM package.

On a side note, I have experienced similar convulsions in the past, whole body convulsions, when I stopped using Effexor, a SNRI anti-depressant, which was prescribed to me in my 20s. Those were at least as painful, but at the time, the internet did not contain the kind of information that would have helped me. And my psychiatrist’s solution was to increase the dose of Effexor, which I wanted to get off because I was no longer depressed by anything other than the side effects of the drug!

Beyond the three most prominent symptoms, I had the other usual symptoms of herxing:

  • Night sweats. I had no night sweats the first 4 nights. Days 5-9, I had night sweats, sometimes more than 1 per night. The next two nights, I woke up overheated but not wet. Then on Day 12, I had a supersoaker, followed by 3 more nights of sweats. Then 4 days of waking up overheated, followed by a light night sweat and 5 days of night heats without sweat. Day 26-28 and the first 3 days of taking a break from CHIM, I had more night sweats. The last two nights I had night heats. I see these as the battle against Babesia (4 days on, 4 days off), followed by a measure of overflow of Bartonella toxins that my kidneys couldn’t process. I can’t be sure, as both infections (and their herxes) cause night sweats, but this is my impression from past experience.
  • Insomnia. One of the good things is that insomnia is happening less frequently. Even when I get up to change into dry pajamas or cool off, I can usually go right back to sleep. I had insomnia on the following days: 1, 6, 7, 10, 16, and 21, when I couldn’t fall asleep then woke up over and over during the night.
  • Joint and muscle pain. Joint pain includes pain, stiffness, and popping in my spine, neck, ribs, and the joints in my arms and legs. It is a classic Lyme symptom, but also happens sometimes with Bartonella herxes. Muscle pain is usually in the shape of a knee high sock or an elbow length glove. It also includes several days of muscle spasms and knots in my back and buttocks. I had joint pain and muscle pain for the first 9 days of the treatment, then a short respite, which coincided with stopping the daily Advil. About 3 days later the pain returned and was worse through the end of the CHIM package.
  • Headaches. I had short (<3 hours), moderate headaches intermittently on approximately 10 days of the 28-day package.
  • Bronchial irritation. I had coughing fits and soreness in my airways for the first 4 days, then it disappeared.
  • Constipation and lower abdominal pain. This typical symptom of a Bartonella herx was a problem only during the second half of the package. Most days, I had close-enough-to-normal bowel movements, which was one of the things that made me notice that the CHIM was having a positive effect.

I had a new symptom part way through the package, but I’m not sure of the exact day. The soles of my feet started to peel. I’m not sure if this is a case of athletes foot or some other phenomenon, but it was notable. I’ve been using diluted essential oils to treat it (lavender at night, a citrus blend or lemongrass in the morning). It stopped spreading until I skipped a few morning doses then spread further along the balls and heels of my feet.

The biggest positive effect of the repeated packages of CHIM is that I had almost no PMS and mild cramping with the start of my menstrual cycle. I stopped taking DIM (which I’ve used for years to regulate my cycle) shortly after I got home from traveling (Day 3 of the package), and suffered no ill effects in not taking it. I was told that CHIM might rebalance my reproductive hormones, making DIM both ineffective and unnecessary. That has finally shown itself to be true.

After the CHIM package was finished, I took 5 days off. I took 2 doses of FLUOX for three days, then 3 doses of FLUOX for 2 days. The main issue was (and continues to be) kidney pain. I had some energy for the first three days, then I fell into pretty severe fatigue again. On days 4 and 5 of the break, I had tingling in my arms and legs as well as rib pain, and I knew it was time to start the next package.

During the last week of CHIM, I tried drinking juiced greens. They helped a little, but not as much as they have in the past. It seems that consuming large quantities of vegetables (such as cooked cabbage or raw salads and whole herbs) works better for me at this point. The fiber tends to absorb more of the toxins that make it into my digestive tract as well as providing chlorophyll to assist in cleansing my blood. In addition, I’ve been drinking kombucha and roasted dandelion root tea to supplement the morning doses of chanca piedra and milk thistle. Even with all of these, it doesn’t seem to be enough to support my detoxification pathways and get rid of the kidney pain.

Bartonella and Weight Gain

I have been treating Bartonella one way or another since 2010. Although I had previously used oral antibiotics that are meant to treat the infection, such as Levaquin, they didn’t have much of an effect. In autumn 2010, I used Rocephin for the first time. It gave me terrible kidney pain (and two kidney stones) but I didn’t know what the pain was from. I assumed it was from the drug.

Months later, I used 832Hz to coil for Bartonella. I didn’t experience kidney pain from treating Bartonella until the first time I coiled my spine. Then from 2011 until February 2016, I coiled for Bartonella on my central nervous system and in the areas where the nerves leave to become my peripheral nervous system. Coiling for Bartonella caused kidney pain proportional to how much I coiled the key areas. Over time, my symptoms shifted and many of the neurological symptoms diminished. Unfortunately, I never got to a point where coiling for Bartonella no longer gave me the particular herx symptom of kidney pain.

At the same time as the Bartonella herxes, I began to gain weight. During the most intense coiling with the most intense herx symptoms (which I’ve written about here), I started gaining weight at a rapid clip. From May 2013 to December 2013, I gained 25 pounds. At the time I attributed the weight gain to Vitex, a supplement I was using to deal with the irregularities of and problems with my menstrual cycle (including PCOS). I believe that Vitex contributed to the speed of the weight gain. However, I think that the Bartonella herxes played a role by poisoning my body faster than I could clear out the toxins.

In the intervening years, I’ve not been able to lose weight. I have several times dipped below 160 lbs, but never for long. This past year, as I have again been more focused in attacking Bartonella, my weight has reached past 175 lbs. The more my kidneys hurt, the faster I gain weight.

To give you a sense of how drastic this is, when I was at my low point, on antibiotics, allergic to lots of foods, and dealing with candida in addition to the tick-borne infections, I barely hit 120 lbs. I’ve gained a lot of weight as I’ve tried to get rid of the Bartonella infection.

To be clear, I’m no longer on a completely grain-free, sugar-free, fruit-free diet. However, despite occasional high carb meals (2-3 per month), I pack on weight very easily. I mostly eat vegetables, protein, fruit, and high quality fats (think avocados and olive oil). I also eat cheese and small quantities of grains 1-3 times per week. This is not a weight gaining diet.

I don’t know the mechanism for the weight gain. I’ve read things that give some possible clues. One theory is that the body creates fat tissue to store toxins that it can’t eliminate right away. Another theory is that the stress of the herxes after the years of chronic infections has damaged my HPA axis (Hypothalmus-Pituitary-Adrenal), causing my body to store fat and feel tire. Another theory is that my thyroid gland is no longer producing sufficient hormones (though when I tested it in 2014, the hormones were well within the normal range, not near the low end). Another theory is that the insulin resistance I developed in my late 20s, after I got infected, and which manifested as PCOS, is made worse by the Bartonella herxes. Or maybe some combination of all of the above and a few other problems that I don’t know about all contribute to my increased body mass.

I my 20s I gained lots of weight when I was on psychiatric drugs. I gained 55 lbs in 10 months. When I had weaned myself off all the drugs, I started spontaneously losing weight, like 5 lbs a month every other month, for quite a while. No change in diet. No increase in exercise. I stabilized at 135 lbs until I started to get sick. Then I rapidly gained a few pounds which I kept on for several months. Finally I became disabled by Lyme, allergic to everything, went on antibiotics and dropped too much weight.

If I’ve learned anything from my history, there are other factors, besides diet and exercise, which influence or even govern my weight. I am hoping that when I stop herxing from Bartonella (maybe by getting rid of the infection or making it dormant), that my weight will return to a more comfortable level.

CHIM and Menstrual Changes

It could be a question of timing. It could be that I’ve recovered enough of my body from the infections that this would happen anyway. It could be that CHIM made these changes. It could be that I’m getting older (now 41 years old). But my menstrual cycle is changing.

Two months ago, I had 2 weeks of miserable PMS. Last month I had only 3 days of mild PMS. In the years since I started coiling, I can tell when I ovulate because I get mild mittelschmerz, where I can feel pain from the fluid that is released when the egg leaves my ovary. Then I can smell the changes in my body (either because the smells change or my sense of smell changes). There are predictable amounts of swelling in my abdomen and breasts. There is a certain amount of discomfort and cognitive reduction that I’ve gotten used to. And I usually have 5 days of PMS symptoms.

Last month, after the previous strange cycle, I had PMS for only a short time. I could still tell when I ovulated, but it was less obvious than before because there was no mittleschmerz. This month, there are no clear signs of PMS or that I ovulated. It could be that I didn’t. (I’ll find out next week if my cycle doesn’t start on time.) Or it could be that I’m joining the many  women I know who don’t suffer from PMS…at least for a month. If it is the latter, I’m very grateful. If it is the former, I’ll just have to live with it.

Disclaimer

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The Fourth Package: Temporary Relief

Tuesday, July 12, 2016

Thank you to all of the people who have written to me over the seven weeks since my last post. Your words encourage me to keep writing about my experience with the Alfons Ven Lyme Package.

I started the fourth package of CHIM on May 25. I was nervous about this package because two of the people I spoke to about Alfons Ven remedies told me that the 4th package was the worst. They had psychiatric and neurological symptoms that were out of proportion to how they felt before they started the Ven remedies. (Both of them had previously used a coil machine to treat Lyme and other chronic tick-borne infections). I had a secondary concern. I started CHIM while I was away from home, providing child care to my nephew and niece for two weeks. I was concerned that I would be unable to care for them.

Since I have not yet relied exclusively on Alfons Ven products, I had several supplements and a pain killer with me. I took my usual supplements: milk thistle, chanca piedra, DIM, magnesium, calcium, vitamin D, and vitamin K. In addition, I took Advil (ibuprofen) every morning to help minimize the inflammation in my left foot that has been plaguing me for months. Two Advil in the morning also helped reduce my overall perception of pain. I wasn’t shy about taking a second dose during the day. I also had with me NAC (n-acetyl cysteine) in case my symptoms got to be debilitating. Beyond CHIM, I was taking 1-2 daily doses of FLUOX.

The First Two Weeks of CHIM

Since I had to travel by air to see my sister’s children, I ended up with hugely swollen ankles. This doesn’t happen every time I travel, but it has happened before. Unfortunately, I had to do quite a bit of walking in the first few days after I arrived, which is right when I started the CHIM package. My feet and ankles were in tremendous pain. I ended up needing foot/ankle support braces because my ankles were giving out on me. I had to keep my feet elevated (my back on the bed, my legs straight up the wall) for 30 minutes to an hour each night for four nights, to get the swelling down by 80%. It was pretty bad. I wore the ankle braces for a full month.

In the first two weeks on CHIM, I had a swollen abdomen, bronchial irritation, and insomnia. The first ten days, I had daily night sweats or waking up at odd hours completely overheated. Many days, my joints were popping and cracking every morning and got stiff by the evening.

The further complication was that I had crazy PMS that started two days before I began the CHIM package. I was warned that CHIM can “override” the DIM I’ve been taking for years. DIM, or diindolylmethane, affects the balance of estrogen-related hormones. I’ve used it successfully to regulate my menstrual cycle and minimize PMS. This time however, I had swollen, tender breasts for 2 weeks! I had mild abdominal cramping on and off during those weeks. I think the insomnia may also have been related to PMS. I suspect that the CHIM was doing something that helped kick out the infections from my endocrine glands or that it was rebooting them. Fortunately, I had a day off from child care when my menstrual cycle started. I stayed in bed until about 1pm, then I was able to go for a walk and do a few things. It could easily have been much worse.

I knitted the legs and claws in the evenings after the kids went to bed. Now my niece has a fiddler crab to play with.

I knitted the legs and claws in the evenings after the kids went to bed. Now my niece has a fiddler crab to play with.

On the positive side, despite my symptoms, I had more energy than usual. I was able to get up with the children in the morning. I took them somewhere to play until lunchtime. I rested or napped when they napped for two hours in the afternoon. Then I kept them occupied until dinnertime with something at home or by taking them out for another adventure. By dinner, I was done for the night. I didn’t have the attention to read, watch, or listen to anything. Instead, I put my feet up (literally) and knitted, my form of relaxation.

All that worked pretty well.

The Last Two Weeks of CHIM

After the time with my sister’s family, I went with my husband on vacation in Ireland. It was fabulous to have down time. I rested some, but I had energy. We took advantage of my energy to go for long walks and even a bicycle ride.

We went to the Cliffs of Moher and walked around.

We walked around the Cliffs of Moher.

My symptoms started to change around Day 12 of the CHIM package. The night sweats stopped for about 10 days. Then after two nights of mild sweats, the night sweats disappeared until after the month was over. Also at night, starting on Day 15 and for the rest of the package, I slept well. No insomnia for two weeks.

The bronchial irritation calmed down for a week, until I started to catch a cold. The abdominal swelling went down from Day 12 to Day 16. For three days, I was bloated for a few hours after I ate, but it went away until the next meal. Then on Day 20, I had loose bowels. That continued for several days. At the same time, butt acne reappeared, which is one of my usual signs of a Bartonella herx. That’s also what I attributed the loose stools to.

The new symptom, one that started on Day 19, was a neurological feeling of being shocked. I would feel a spot get hot and painful on one of my legs or feet. As it became unbearable, my leg would twitch uncontrollably. It happened on all but four nights until the end of the package. On days I wasn’t dealing with twitching and electric shocks, I had tingling, numbness, and a buzzing sensation in my arms and legs. My nervous system was definitely a focal point of the treatment and the die-off symptoms.

I walked a lot despite continued foot pain. I continued to wear foot supports and consume a lot of Advil. Most days, my feet swelled up by evening. Usually the swelling was minimal by the time I got up the next morning.

On Days 22, 23, 26 & 27, I needed a rest. I spent the days either in the car or in my cousins’ house (in Scotland), puttering around and resting. I couldn’t move. I couldn’t go for a walk or engage in activities that required standing. I pushed myself on Days 24 & 25, but I reached my limit. It was on Day 22 that I started the NAC. I felt a cold coming on and I knew that I had pushed my body too far. Even though the cold never fully blossomed, I continued the NAC until the entire trip was over.

At the end of the CHIM, actually on the last day that I took it, I started having pain in the lower half of each leg when I went to bed at night. It was bad enough that it prevented me from sleeping. I started taking Advil at night to give me enough relief to go to sleep.

After the Fourth Package

After my husband went home from our vacation together, I stayed in Scotland for a few days to visit with my extended family, then headed to New York for my aunt’s 100th birthday party. I knew I had reached my limit by the time my husband left, but I had a few last things to do.

The amazing thing was that I still had energy. I still had attention to do things. The twitching in my legs and the pain in my lower legs at night was pretty bad. But during the day, I was mostly okay. My abdomen swelled up every morning and stayed that way for much of the day, but it went away overnight. I slept reasonably well with a painkiller, awakened each night only for a night sweat (and change of shirt). I was able to do a lot of walking, but I could tell that the energy expenditure from walking reduced my cognitive abilities. Fatigue made it difficult for me to participate in conversations. I couldn’t even knit in the evenings because I was so tired.

Over the Hump?

When I came home, I started on the fifth package of CHIM. After the fourth package, I felt assured that I was over the hump—the place in my treatment where Bartonella seems to drain my energy and never budge. Now, two weeks into it, I’ve changed my mind. But that story is for another day.

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