Tag: doctors

LDI: Success! A Case Study

I hadn’t had night sweats like this for years. The kind where you wake up several times with a T-shirt so soaked you have to change it.

I’m still not sure what happened, probably me getting overly aggressive using antimicrobials to treat Lyme disease. But suddenly one morning I felt like I had the flu – feverish, racing pulse, no energy, sore throat, muscle soreness and that profuse sweating.

Symptoms continued for just over a week, until, fortunately, it came time for my LDI (Low Dose Immunotherapy) treatment. The night I took the LDI dose, my  sweating reduced dramatically, and over the next couple of days the other symptoms disappeared.

So what the heck happened?

Well, it looks as if LDI worked just the way it is supposed to work.

For those of you not familiar with it, LDI has been around for several years now for the treatment of Lyme and other conditions. Patients are given extremely low dose antigens (we’re talking one part per one hundred millionth and less) of deadened pathogens or other substances and this process is supposed to prod the immune system to produce a more measured response and thus reduce or eliminate symptoms.

I’ve been doing LDI for three years and I can tell you it doesn’t always happen that way. The trick is getting the dose just right. Too strong can mean increased symptoms, sometimes causing serious problems, while too weak often produces no benefits.

This was my 22nd LDI treatment, and for the most part it has helped keep my immune system in balance and has been a key player in helping me slowly get a lot better. But while it has been a good treatment for me, it hasn’t produced the miraculous results some people have enjoyed.

This time my doctor seems to have nailed it with her dosing choice. Those who do LDI might be curious to know what that was (18C for the Lyme mix and 10C for the yeast mix. The C is a standard measure of homeopathic dosing.) From what I understand, that is a fairly weak dose for Lyme and a fairly normal dose for yeast.

So, once again, what the heck happened?

I think it started with my attempt to follow Dr. Dietrich Klinghardt’s retroviral protocol. I have followed Dr. Klinghardt’s work closely and consider him a brilliant Lyme doctor, so I paid attention when he recently said treating retroviruses was a key to overcoming Lyme.

I slowly started taking supplements from the protocol, such as broccoli sprouts, selenium, nettles, bitter melon and cistus tea.

I’m pretty sure it was the cistus tea that caused the reaction. It is known as a strong antimicrobial and it was the last retroviral supplement I took before the flare-up hit.

I didn’t expect anything to happen because I’d taken it many times before, but anyone with Lyme and co-infections is aware that you never know what is going to cause a die-off (aka Jarish-Herxheimer or herx) reaction.

Fighting Lyme is a war and those of us waging it have lots of land mines inside of us in the form of hidden microbes. Take the right (or wrong) antimicrobial at the right (or wrong) time and it can interact with that land mine and Boom! you’re lying on the couch wondering what hit you.

For me, a herx usually lasts a day or so and I haven’t had a severe one in a long while. Not so this time. One day turned into nine and the sweat just kept on coming.

That’s another problem with chronic Lyme. Sometimes when your immune system gets ramped up, it doesn’t calm down once the microbe that started the fuss has been dealt with. This can be dangerous, as an out of control immune system can produce out of control inflammation and other symptoms and has the potential to turn a one-day herx into a relapse.

This is where I feel LDI is most valuable. It can calm an out of control immune system, shut down symptoms and stop a negative spiral.

I think that’s what happened this time. Just how it managed the trick I’m not sure.

It was almost as if my immune system changed the channel. When it saw the LDI antigens, it was like it let go of its death grip on whatever it had latched on to and shifted to working on the Lyme and yeast mixes.

Whatever the case, I went from feeling less well than usual to feeling well in about a day’s time. That didn’t cure me, but it was a considerable relief. Any time you start going in the wrong direction in your fight with chronic Lyme it provokes a lot of stress and worry.

When it first came out, many people hoped LDI would be a breakthrough treatment for a wide swath of chronic Lyme patients. But while it hasn’t produced remissions for as many people as hoped, it is now generally seen as a helpful adjunct treatment for most patients who use it. In fact, I’ve heard it recently described that way by both my own doctor, and by noted Lyme doctor Neil Nathan.

“Helpful adjunct treatment” would accurately sum up my LDI experience,  but that’s nothing to dismiss. Anything that works against Lyme is highly valuable. And after my latest LDI experience I would add the word “very” to helpful adjunct treatment.

LDI: Glad I didn’t quit

Okay. Raise your hands. How many of you doing Low Dose Immunotherapy have thought of giving up on it?

I know I did, and I think I’m far from being alone. LDI can be a fantastic treatment for Lyme Disease and other illnesses, but it can be very hard to get it to work.

Finding the core dose is key, and that can take a painfully long time to settle on. It took me more than a year of tries that often ended up with me feeling a lot worse than I wanted to feel.

For those unfamiliar with LDI, it’s a relatively new treatment most often used for Lyme and its co-infections, but it also can be applied to many other things. The idea is to get the body to stop overreacting to whatever the problem is and react in proper measure.

This is done by giving patients incredibly diluted substances (we’re talking one part per one hundred millionth and less). These dilutions are made from deadened pathogens and prepared in homeopathic fashion. The most commonly used one is the Lyme mix, which  consists of 74 species that include the Lyme bacteria (Borrelia), along with species of Bartonella, Babesia,  Ehrlichia and Coxiella.

I started nearly two and a half years ago with the Lyme mix at the 15C dose, which caused a moderate aggravation of symptoms. But I was told this was good news, as a reaction meant I was responding to treatment, and that eventually I’d find the right dose.

One of the difficult things about LDI is if you have a symptom aggravation, known as a flare, you have to wait seven weeks until you can take the next dose. The theory is that the immune system is not ready for another dose until this period is up.

What keeps you going during these long stretches is hearing stories of others who’ve had phenomenal results with LDI. And these are fairly common tales of people who had all but lost hope, and then suddenly started to get much, much better. Very good things can happen when an out of control immune system gets back in sync.

So I went down to 17C the next time. This time the results were mixed. Some things were better, some things worse. My doctor called it a mild flare.

Following that came 19C. It didn’t seem to do much, so we tried 18C. That was on the whole positive and I felt somewhat better, but we thought we could do better.

By this time, more than half a year had passed. I was starting to wonder if my efforts couldn’t be better spent focusing on other treatments. All in all, I felt my condition had modestly improved, but was it enough to bother continuing?

We decided to reduce the dose to 17C again. This is where LDI can get confusing. This time 17C worked better than it had the time before, and since I continued to feel a bit better it seemed this might be the core dose.

But why was 17C more effective this time? Maybe my body had become stronger and better able to handle a stronger dose. Maybe my microbial load had dropped.

And maybe it was one of a million other possible reasons. LDI uses a homeopathic dose, and in my experience with homeopathic dosing I’ve found it highly unpredictable. It is to medicine what the knuckleball is to baseball pitching. When you let it fly, you can never be sure what’s going to happen.

So next came 16C and that was too strong. Nothing dramatic but I felt like I was carrying a heavy backpack around the next 10 days.

At this point, I’d tried everything from 15 to 19C, and it looked like there was going to be no miracle for me. I fell into probably the same category as most people. For me, the LDI Lyme mix had become a helpful treatment that reduced my overreactivity and brought about improvement in my condition.

So after conferring with my doctor and looking back over my symptom journal many times,  I decided to make a conservative move and go back to 18C. That seemed to work well. I clearly felt better taking that dose than I would have if I hadn’t taken it. A 17C dose might have been slightly better or slightly worse. But looking over my journal it looked like the results from 18C were slightly better than 17C, so 18C it would be. The core dose was finally decided.

I also wanted to settle on a core dose for the Lyme mix, because I wanted a clear field to try the yeast mix, which was also said to bring about big gains for many people.

After taking a year to find the right number for the Lyme mix, I lucked out on the yeast. This time 10C was our first choice and I clearly felt a lot better on it. We decided that we’d found the core dose on try number one.

Like I said earlier, I’m glad I didn’t quit because while I haven’t experienced any jaw- dropping results, I have made steady progress on LDI. I’m considerably stronger than when I started and better able to handle whatever life throws at me. I’m also less likely to overreact to either pathogens or to allergens, so I have far fewer bad days than I used to and the bad days are a lot less bad.

I’ve come to believe LDI is a valuable treatment primarily because I agree with many Lyme doctors (Dr. Dietrich Klinghardt being one of the most notable) who in recent years have concluded that the biggest problem with this disease isn’t the bugs, it’s the body overreacting to the bugs.

If you can’t get your body to stop overreacting, then even if you kill some bugs and that gives you a spurt of energy, your body is likely going to fritter that energy away by overreacting to something. It’s like giving a compulsive gambler a whack of spending money. Pretty soon it’s all gone.

The other reason I like LDI is that there are very few other things that can reliably get my body to stop overreacting. So mark me down as a satisfied customer.

But like I said, LDI can be very unpredictable. Next week, I’m going to add in the antigen for Mycoplasma. I’ve tested positive for the nasty fermentans strain of this bug, and I’ve been hesitant to take it on. Still, after nearly two and a half years of doing this treatment, I feel confident that I’ll be able to handle this one. Wish me luck.

 

 

 

 

Seven Things My Lyme Doc Taught Me

It took me a long time to find her, but I am fortunate to say that I have a good Lyme-literate medical doctor (LLMD) who has taught me a lot of important things.

If my count is right, she was the 14th doctor I saw before finding someone who was able to help me. Sounds like a lot, but many Lyme patients have a longer list. She could help because she had been through something similar herself, and had the knowledge and compassion to be able to help others get through their ordeals.

So what has she taught me? Probably more than I’m outlining below, but these are the things that come to mind.

#1 – A LOT OF THIS IS ABOUT TOTAL LOAD – Total load means the total amount to stressors your body is facing. Obviously, Lyme is a big stressor. So if you have Lyme, you have to reduce the other stressors.

Doctors who subscribe to the total load theory use the rain barrow analogy. Stressors are like rain that falls into a rain barrow. As long as the rain stays in the barrow you’re OK. But too much rain (i.e. stressors) and the barrow overflows. That’s when you get symptoms.

There’s no shortage of stressors – Lyme, other infections, emotional and physical stress, heavy metals, pesticides, poor diet, dental amalgam fillings and other dental problems, candida, etc., etc. One of the keys to getting healthy is eliminating and reducing stressors and keeping the water from spilling out of the barrow.

#2 – B VITAMIN SHOTS CAN HELP A LOT – One doctor told me not to bother with B12 shots because he said I didn’t need them. Another doctor told me B12 shots were quackery. But my doctor said I should try both B12 and B complex injections. She was right. They helped a lot, giving me some energy at a time when that commodity was worth about a million dollars an ounce to me.

#3 – CATCHING COLDS OFTEN MEANS YOU MADE A MISTAKE – During one of our visits, my doctor was chastising herself for getting a cold. Turns out she felt she made a mistake.

I’d always thought catching a cold or the flu was an accident that couldn’t be helped. But I now see it as something that’s an unavoidable accident about half the time and an avoidable mistake the other half.

Maybe I forgot to wash my hands after being in public during cold and flu season, maybe I skimped on sleep and my immune system suffered, maybe I got stressed out on a day when I felt the first sign of a tickle in my throat. Or maybe something else. This doesn’t mean being a germophobe, it just means that when you have a serious illness like Lyme, you need to be careful to not pick up other infections.

#4 – YOU CAN IMPROVE YOUR EYESIGHT – I’ve always been looking for ways to improve my vision, and I’ve asked several eye doctors this question. They all say there’s nothing you can do.

Not true, says my doctor. She had a strong prescription of -5.50 that fell to a moderate -2.50. That’s a huge drop. She said she did it by gradually healing infections in her body and eyes, taking a lot of antioxidants and intravenous vitamin and mineral infusions.

#5 – PUT THE TOILET LID DOWN EVERY TIME YOU FLUSH – This thought had never occurred to me. But one day I noticed a clipping on her office billboard showing results from a study that showed flushing with the toilet lid up results in a slew of often pathogenic bacteria flying around your bathroom. I’m not sure how much effect this has on total load, but every bit counts.

#6 – EAT ALL YOUR FOOD DURING A SHORT PERIOD OF THE DAY – I’m not sure if this works for everyone, but it works for me. The theory is that your body likes having a decent sized mini-fast every day. I’d mentioned I was having gut symptoms, so my doctor suggested trying to eat all my food in an 8-12 hour window each day.

Eight hours is tough to manage, but most days I eat my food in an 11-hour period and give my body 13 hours to fully digest it and work everything out. Doing this has helped reduce my gut symptoms.

#`7 – NEVER GIVE UP – My doctor has told me stories of her own desperate efforts to stay alive so her young son wouldn’t lose his mother. She never gave up and taught me the same.

The truth with Lyme is you never know when things are going to turn around in your favor. There are umpteen ways of treating it, and if you keep trying, you’re likely to find one that will work for you. So there’s good reason not to give up. It also helps, a lot, to find a doctor who won’t give up on you. When I was down and out and bedridden, my doctor made 10 house calls to try to get me back on my feet. That’s right. House calls. I told you I was fortunate.

Stephen Buhner vs. The Lyme Conventional Wisdom

You can approach treating Lyme Disease in two basic ways. First, you can look at it purely as a science. Or, you can look at it as partly a science and partly an art.

The conventional wisdom says go strictly with science. Over the past few decades since Lyme hit the map, Western medicine has developed treatment strategies that for the most part fit the disease into its existing paradigm.

It goes something like this. We’ve discovered Lyme is a bacterial infection. We test for it. If the test is positive, we throw antibiotics at  it.

This works great for some people, but it doesn’t work very well for a lot of other people.

Enter Stephen Buhner, master herbalist and author. He is far from the only proponent of the science plus art approach, but no one has done more to champion it.

Among his books are two editions of Healing Lyme, plus two books on treating coinfections associated with Lyme. If you read these works carefully, you’ll clearly see how different his way of treating Lyme is from the conventional wisdom.

It’s not that Buhner isn’t scientific. He worked from 1980 to 2005 as a clinical herbalist and psychotherapist and also has treated many Lyme patients since. In Healing Lyme, Second Edition, he says that he has had contact with more than 25,000 people with Lyme and has read more than 10,000 peer-reviewed papers on Lyme.

In this book, he also gives some stats on his Lyme protocol’s success, saying that from the feedback he received from 2005-2015. he estimates that 75 percent of people experienced what they considered a cure from the program, 15 percent needed to continue with a reduced form of the protocol, 5 percent had some relief, and 5 percent got no help.

The purpose of this blog is to highlight the differences in the two approaches. As mentioned earlier, the conventional wisdom has worked well for many people, while Buhner’s way has helped many others.

I should mention that I’m referring to the conventional wisdom for treating persistent, or chronic, Lyme. It should also be noted that not all Lyme doctors fall completely into one camp or another. Some are a totally conventional, some a bit unconventional, and others quite a bit unconventional in their treatment methods.

But, for the sake of comparison, here’s how I see the main differences between Buhner and the conventional Lyme wisdom.

Conventional wisdom: Only antibiotics will cure Lyme.

Buhner: Lyme can be cured by using herbs and other natural products. Several natural protocols have been developed  by Buhner and by others, and one particular protocol may or may not work for one person, and another protocol may or may not work for another person.

Buhner is not against antibiotics. In fact, he recommends people take them when they have an acute case of Lyme.

Conventional wisdom: Fighting Lyme is like fighting a conventional war. You have to keep blasting away at the bugs until they are defeated. Sometimes this means taking high doses of antibiotics for a year or more.

Buhner:  The goal isn’t to bludgeon the enemy into submission, it’s to understand what the bugs want and need from their hosts and to find ways to deny those needs and prevent them proliferating.

Conventional wisdom: Strong and highly unpleasant die-off (Herxheimer) reactions are an unfortunate, but necessary, part of getting well from Lyme.

Buhner: Herxheimer reactions aren’t necessary. They sometimes happen, but you should try to avoid them.

Conventional wisdom: The doctor creates the protocol and the patient doesn’t deviate from it.

Buhner: Patients should listen to their bodies and tweak their protocols according to what works best for them. Having patients educate themselves and develop a feel for how herbs and natural products interact with their bodies can be very beneficial.

Conventional wisdom: Patients need to push themselves and fight through difficult patches in treatment.

Buhner: Only go as fast as your body is telling you to go. If an herb is making you feel significantly unwell, back off and cut down on the dose.

So now that I’ve gone through the main differences in approaches, I’ll admit to having a bias. The conventional wisdom didn’t work well for me. Buhner’s protocols haven’t gotten me fully well, yet, but they have contributed to substantial improvement.

I also find the Buhner model more sustainable. Going on long-term antibiotic programs wreaks havoc on many body systems, especially the gut, and nobody knows what long-term effects that will have.

The conventional wisdom approach is also hard on the human spirit. The consequence of taking antibiotics long-term is often feeling awful day after day, month after month. Many times the treatment feels worse than the disease.

A lot has changed since the first edition of Healing Lyme came out in 2005. The trend in the conventional wisdom among leading Lyme doctors has slowly been moving in Buhner’s direction.

Herbs and other natural products are more commonly used as many doctors are now willing to look beyond solely an antibiotic approach. And this makes sense to my mind. Buhner has studied Lyme Disease as thoroughly as anyone and understands it as well as anyone, and people should look closely at his work.

5 things that got me out of Lyme hell

I can’t recall the name of the comic strip, but I remember this hairy little troll living in a dungeon. You’d always see him on his knees digging in the dirt, trying to make a tunnel out of prison.

This is what it’s like being stuck in the middle of a really bad case of Lyme. Every day you try to gain two inches of ground and try not to lose more than one.

I know. I was there. For a long time.

Bedridden week after week, housebound month after month. Things would occasionally get a bit better, and I could go outside and walk at the pace of the average 95-year-old for 20 yards or so, but rarely more than that. This went on for seven years.

How bad was it? First of all, my doctor thought I might be dying.

Beyond that, I spent years not being well enough to see friends, not well enough to go anywhere, not able to talk on the phone or read for more than 10 or 15 minutes a day, not able to watch TV for any longer than that, not able to do much of anything but lie in bed thinking mostly about ways to get out of this predicament.

Worst of all were the times when I wondered if I was dying.

After falling asleep exhausted, I’d sometimes wake up a few hours later and still be so exhausted I’d have to lie there motionless for a half hour or more to get the strength to make the seven-step walk to the bathroom.

There was one hot night when I felt I would pass out, and I staggered across the hallway into my father’s room to where the window air conditioner was.

So how did I get out a hole as deep as that?

I can think of five main things that made a huge difference. They are as follows:

PRAYER:

I come from a Christian family. My father is a preacher and has many preacher friends. I never stopped praying, and neither did my mom or my dad or their friends or people at my church. My name was on the church prayer list every week for years.

Several times prayer warriors drove more than an hour to pray with me, and one preacher friend not only prayed but fasted to try to aid my cause. I believe God answered those prayers because I started getting well very suddenly.

I started by making my walks a bit longer, and soon I found my legs had normal strength for the first time in nearly a decade. The whole process took several months, but I went from maybe 10 per cent of normal to about 70 per cent of normal.

Now I could see friends, I could talk on the phone all I wanted to, I could exercise, I got my driver’s licence back, I could do a whole bunch of things I hadn’t been able to do before. Bedridden no more, housebound no more. And I hadn’t made any significant changes to what I was doing.

This sort of thing just isn’t supposed to happen after seven years of being so low. Did God heal me? I believe he did.

BELIEVING I’D GET WELL:

I must admit there were days when I fought off feelings of hopelessness, but I truly always believed that I would get well. I told people that many times and could see from their expressions they didn’t believe me. Once I overheard my mother talking on the phone with a friend, referring to me as “an invalid”. My mother acted heroically for me in many ways, but I sternly told her never to call me that again.

I remember back in the dark days I bought a pair of running shoes. At that point, I couldn’t have run if the house had been on fire, but I did it because I believed I would run again. I don’t know the science behind belief very well, but I do know that many studies have shown that the mind is extremely powerful and so is simple belief.

HAVING SOMEONE TO LIVE FOR:

This may be a cliche, but having someone or something to live for can save your life. In many concentration camp stories, survivors point to that as what got them through.

For me that someone was my son, who was one when I got sick. My illness coupled with a stressful job made life extremely difficult for my ex-wife, and she decided to leave.

Because I couldn’t take care of myself at the time, I was forced to move in with my parents who lived three hours away from where my son lived.  I tried every possible arrangement to stay in the same city as my son, whom I have always loved like crazy, but nothing worked.

I did not see my son for seven and a half years, but I thought about him every day. I’d call him on the phone regularly, usually on Saturdays. Friday was a total rest day. I would do nothing that wasn’t necessary, so I’d have enough energy saved up to talk for the 10 or 15 minutes I was able to manage.

There was no way I could give up. I had to see him again. There was nothing I wanted more than to be a proper father to him, and I was determined that was going to happen.

KEEPING IN TOUCH WITH A GOOD DOCTOR:

I was very lucky to find a skilled, compassionate doctor who had gone through a similar experience herself. When I still lived with my wife and son, she made at least a dozen house calls, and when I moved to live with my parents, we had short phone consults every two months.

There wasn’t a lot she could do from a distance, but she monitored my situation and made many helpful suggestions. Maintaining contact with her was vital for me because I knew that I wasn’t fighting this alone, and that an experienced doctor could guide my steps.

MOVING IN THE DIRECTION I WANTED TO GO:

I mentioned buying a pair of sneakers earlier. That was one example of keeping my brain thinking that I would get well and preparing my body for the day I would be well.

It also meant doing everything I knew of to live as healthy a life as I could, whether that meant only eating healthy foods, getting as much fresh air into my room as possible, being as active as I could be under the circumstances, or spending a lot of time thinking about what I needed to do step by step to get through each day as well as I could.

That meant if I felt well enough to walk for even 10 feet, then I’d walk for 10 feet. If it meant I could do a bit of light stretching without feeling negative consequences, I’d do a bit of light stretching. If it meant having someone come to pray with me even if I felt wretched, then I’d do that. Digging that tunnel out of jail bit by bit by bit. And, finally, freedom came.

Photo: Eric Davidson

Rope a Lyme dope

Remember Muhammad Ali and his rope a dope trick. Well, that was a long time ago, so maybe you don’t, but here’s how it goes.

Ali was the world’s heavyweight boxing champ for much of the ’60s and ’70s. He didn’t know it, but he was stealing one of the Lyme bacteria’s killer strategies.

In many fights, he would spend the 14th and second last round huddled against the ropes, gloves up covering his face and his brawny arms covering his torso.

His hapless opponent would pound away at Ali’s rock-hard midsection, and the champ would barely feel it. He didn’t punch back, but just stood there getting his second wind.

Then came round 15 and Bam!, a fresh Ali knocked out the dope who’d just worn himself out a few minutes before.

Sound familiar Lyme sufferers? Who among us hasn’t been that chump? While Lyme bides its time waiting for an opportunity to strike, we often wear ourselves out trying to fulfill our commitments with the limited energy we have. When we do have a window where we feel better, it’s so tempting to try to rush to get things done. Never enough time. Always catching up.

Like so many people, I didn’t know I had Lyme when I first got sick. There was no bullseye rash and the dozen or so doctors I tried to get help from never even brought Lyme up as a possibility.

I felt absolutely dreadful all the time, but the doctors said there was nothing wrong with me. I asked if I should stop working and they could see no reason to do that. “You can’t hurt anything,” one said. And I believed him.

So I kept working, thinking it was some flu bug that would soon pass like all the other flu bugs had over the years. Like most people, I had a stressful job, and I kept running around, wearing myself down until I finally had to stop working.

I desperately wish I had that to do over again. The way to beat rope a dope, I’ve learned since, is to chill. Be like Ali, conserving your energy. Now if I start to feel I’m rushing around too much and getting tired, I stop and take a brief nap. I also take a short nap after lunch and spend time meditating after dinner.

I don’t work full-time, so I can do that. But even if I had that kind of employment, I could make adjustments to keep myself from getting overtired. For example, I have a friend who spends many a lunch hour sleeping in his car.

So, my rule is never, never, never knock myself out. Exercise, yes, but not to the point where I’m bushed. And maybe there’s something I really want to do, but it’s going to require getting stressed out. Regretfully, I pass on it. Too many times I’ve overextended myself and given Lyme the upper hand in our daily tussle.

By refusing to play the dope anymore, I’ve slowly been able to gain back ground from my arch-nemesis in the black corner. It’s rematch time. Lyme won the first battle, but I’m winning the second one.