The best (self-)treatment for Lyme disease: Doxycycline
My Lyme story
I have been suffering from Lyme neuroborreliosis since 1995, and I still have symptoms of the infection. After years of constant, aggressive treatment with a wide variety of orally taken antibiotics, I still tested IgM-positive on a Western Blot and immunofluorescence test. For two strains of Borrelia. I had been camping in the woods without adequate protection, woke up with several ticks embedded in my skin, didn't notice the one on my upper back and digging that one out days later caused a bloody mess with bits and pieces of arthropod coming out. Due to mainly my own stupidity, I did not obtain adequate antibiotic treatment in the country I was in at the time. I got the classic bulls-eye rash. Mild neurological symptoms appeared already weeks after the event but it took years of insiduous, ever-so-gradual worsening before they suddenly exploded into an acutely life-threatening situation and I ended up in the intensive care with a full ECG, an oxygen tube under my nose and an IV drip. I was about to embark on a journey through hell. The suffering over the years that followed was indescribable. I pulled through with the support of others, my will to live and my fear of death and my relentless pursuit of antibiotics. I should have been dead a long time ago. I survived and pulled through because I was lucky enough to have access to an unlimited amount of various antibiotics - indefinitely. My improvement on those highly-dosed antibiotics was so slow that I could detect improvement only month-by month. The first months, my heartbeat was often 175 in complete rest (usually in the middle of the night, preventing sleep), landing me in hospital, sometimes by ambulance. Then it was two years of 120 in complete rest. I had pains everywhere, skipping beats, a constant headache for a decade, reduced use of my left hand, years of heart rythm problems, inflammation of tendons, joints and what seemed the cartilage in the spine, Lyme rage, insomnia, inability to concentrate or tolerate the sound of stirring a teacup, paranoid-anger periods where I would take a knife or an axe to the door when the bell rang and I was alone at home, the destruction of what was me, my character. All this lasted years and years with some symptoms getting slowly better and others appearing. The worst was the constant feeling of dying, of imminent death. I felt as if I was suffering a heart attack 24/7. It is not possible to describe how it is to have a chronically inflamed brain. Sometimes I lost all strenght in my arms or legs and I felt a terribly strong feeling of imminent death. That feeling seemed to come from some warning system inside the brain, it was not an ordinary fear or nervosity something like that. I had spasms, cramps and tremors in my entire lower body. At night I sometimes woke up from unbearable pain due to an extreme cramp in my calf. I could not help shouting out and waking up my husband. It always took weeks for the torn muscle to heal, and it often reoccurred before it could heal. I could not walk much because the tendons in my feet were inflamed for years. My brain had given up on me. I would get lost in familiar places and my short term memory all but disappeared. I could not drive a car anymore. I had become a desperate, dying animal, a faint shadow of my former self, unable to walk to a neighborhood store, unable to feel any of the emotions of a normal person, unable to think, unable to enjoy anything. The first months I had too pee in a pot because I could not make it to the toilet downstairs. Always an avid dreamer, for many years I did not dream any more. Unable to go to my dreamworld where things were OK. Not able to escape even in sleep, aøso because of the severe insomnia that destroyed my immune system and my mood. Yes, the lack of sleep itself was slowly killing me. I had become a burden to those around me and it did not register with me - all I was focused on was to survive or at least for the suffering to stop. Sometimes I hoped I would die that night. I was jealous of my neighbor with cancer. I was jealous of people with AIDS. At least they were getting treatment. At least people understood their predicament. At least their illness was recognized by the medical establishment.
The bacteria in my brain reduced me to a reptillian existence. I discovered all the functions the brain performs without you being aware of it. The brain regulates your body temperature. It regulates your blood pressure and your heartbeat. It allows you to go to sleep. It makes you able care about your loved ones. When the brain gets damaged, you may lose the ability to stand for longer than a few minutes. You may lose the ability to sleep, the ability to walk more than a few hundred yards, the ability to write, the ability to remember things, the ability to concentrate, the ability to love, the ability to control your bladder. I lost all these things and more. I was in contant pain and I was constantly exhausted from lack of sleep and ridiculously high stress levels, the typical Lyme-fatigue and the neurological problems. There was a year or more where my breathing used to stop for two minutes every 15, 20 minutes or so. I would only notice when I suddenly violently gasped for air. A safety mechanism had kicked in. During that time I also suffered from incontinence. I am not ready to die and I doubt I truly ever will be so I would not kill myself unless I had a very, very good reason. But if I ever will face the same ordeal again, I will do it. My husband knows and he agrees. I'll do it with a plastic bag over my head, a rubber band and a bottle of helium.
My (self) treatment
I had a hard time getting initial treatment, at the end of the year 2000. I was so sick that I did not think I would make it to the next millennium. But in spite of my pleadings, it seemed that my GP thought I suffered from menopause-related hysteria or something. It didn't help that I was never ill or I never bothered to see him, so he did not really know me. The hospital recorded my extreme pulse frequency but it looked like they also dismissed it as "stress". At that time, after careful literature research of my symptoms I understood I had Lyme disease so I urged them to use antibiotics. That sealed my fate: Neurotic woman demanding antibiotics for self-diagnosed Lyme disease in spite of negative ELISA - next patient please! I rapidly deteriorated until it became a life-or-death situation and my husband managed to bully our GP into prescribing antibiotics by threatening to sue in case I would die. That worked and I took Minocycline the same day. The Jarish-Herxheimer reaction was a sight to behold. The perspiration was dripping from my red, swollen palms, a drop every few seconds. I could not walk through a door anymore but stubled into either side of it. I got a bad localized headache that did not improve much for the next full decade.
I started to educate myself on antibiotics and discovered that I should take higher doses of Minocycline and perhaps try Doxycycline as well, since it was cheaper and had less severe side effects in high doses than Minocycline. I found a veterinarian willing to sell me a shopping list of antibiotics at outrageous prices. I was still a rookie in that regard and only later found Thai, Indian, Chinese and Eastern-European sources. Amoxicillin helped me sleep, even though it does not penetrate the blood-brain barrier so under normal circumstances, it can not reach the brain and is thus useless to treat neuroborreliosis. However, people with severe, untreated neuroborreliosis have encephalitis, an inflammation of the capillary bloodvessels that make up the blood-brain barrier. And that causes them to be permeable and let Amoxicillin's molecule through. In order to reach the brain parenchyma (the brain itself), a molecule needs to be both lipid-soluble and smaller than 500 Daltons (nucleons). Amoxicillin does not fall into that category, and neither do nearly all other oral antibiotics. I tried a wide variety of orals and apart from Minocycline and Doxy, only Amoxi had any effect. And Amoxi only for the first half year or so. After that, not even 24 grams a day made the slightest difference. It was a sign I was out of the encephalopathy phase.
How I treated myself
I settled on Doxycycline, because I felt very miserable on Minocycline. It did not seem to bring me much further after a year of taking it. Doxycycline was the only other antibiotic that had any effect. Doxy causes terrible sun sensitivity, much more so than Mino, especially at the doses I was taking, 400 to 600 mg day - sometimes even 800. Initially I religiously took my pills three times a day, then twice a day, and after years of doing that I realized that the biological half-time of Doxy is so long that it makes no sense to take it more often than once a day so I did that for a year or two until I found it easier on the stomach to take it divided over the day again. I could measure slight but distinct, objectively quantifyable progress over the months. My improvement was initially defined as: "I felt 120 years old at the start of treatment and every month of treatment I feel 1 year younger". That definition was mainly about my fatigue. I don't think a 120-year old on their death bed would feel as bad as I did the first three, four years. I am serious. Many old people die of a heart attack or stroke and those people usually feel quite well all the way to the end. Lymies are often suffering badly all the way to the end, from start to finish. It took years for certain debilitating symptoms to go away only recently I started to have "really good days".
I often tried to see how long I could go without antibiotics without deteriorating too the point that it would set me back too much. My record was 5 weeks, but usually I worsened so much in 2, 3 weeks that it was irresponsible to push it any further. It often took months to get back to the same level of health again after such an experiment. Once I got extremely ill again and remained so for over a year when my husband had made a mistake and told me that the Minocycline capsules I was taking were 100 mg each wile in fact they were 50 mg each. I under-dosed for three, four months and this set me back a couple of years in treatment that could only be repaired by dosing properly again for two more years.
Beware of expired doxycycline - keep it cold
The big danger with Doxy is that it becomes neurotoxic when it is kept for too long at a too high a temperature. Keep it in the freezer for multi-year storage and in the fridge for day-to-day use and you can keep it much longer than the expiry date indicates. The symptoms of doxy toxicity can be very similar to your neuro-Lyme symptoms! I ran into that and it took me ages to find out. Expired Minocycline is even more dangerous but both antibiotics can cause increased intracranial pressure when they're expired or exposed to heat.
My new theory on chronic Lyme and how to best treat neuro-Lyme
Half a year ago, I noticed something very strange that caught my attention. I had stopped taking antibiotics for a while because we were in Greece and I wanted to get some sunshine to boost my immune system. I was suspecting the antibiotics to be expired and I was waiting for a new delivery so I did not start taking antibiotics again when I deteriorated sharply after just a few days. Normally, how I treated myself was:
1. I took antibiotics until I felt I'd reached a plateau.
This usually took two, three months.
2. Stop taking antibiotics until I felt really bad. This took usually two, three weeks to at most a month.
3. Go to step 1.
I always assumed that when you start to feel much worse again after a while of not taking antibiotics, that that was a sign the bacteria were multiplying again and that antibiotic treatment should resume. However, in Greece something remarkable happened: After a few days of absolutely atrocious headache that set on after about a week of not taking antibiotics, I stubbornly refrained from taking abx. and the headache subsided! I felt great! (I never feel remotely great, neither did I then but everything is relative). What had happened? The headache clearly was not a sign of the bacteria multiplying, otherwise it would only get worse or morph into other serious symptoms. I decided to wait it out and slowly my symptoms worsened again. But not after some very good days. Strange. After a lot of deliberation I postulated that:
A) The great majority and severity of Lyme symptoms is not caused by the spirochetes but by our own immune system's reaction to their OSP's (outer cell wall proteins). The inflammatory symptoms are not caused by spirochetes doing damage but by our immune system doing damage. It detects a spirochete and blows it up, along with dozens of cells in the vicinity. A Pyrrhus victory.
B) You can't kill all Bb s.l. (the various strains of Borrelia spirochetes) with antibiotics. You can only kill a small percentage of them. The rest survives somewhere in the brain and certain other tissues such as the joints. They hide out, encyst, migrate to the lowest tissue levels of antibiotics, start efflux-pumping the abx. out of their systems.
C) If you treat constantly with antibiotics, the spirochetes "get used" to it and they start "wandering around" in the brain. This causes a very severe immune response, leading to all those nasty neurological symptoms due to brain damage caused by the immune system and only very secondarily by those few spirochetes. It is backed up by medical literature that the immune response to Borreliæ is inexplicably severe compared to the spirochetal load.
D) It is not the best approach to "see how far you can go" in withholding treatment, only to resume when the symptoms become too severe again. That gives the bacteria too much opportunity to multiply.
E) Neither is it the best approach to treat until you feel the situation has stabilized, because meanwhile the bacteria are "waiting it out" and, getting hungry, eating a bit of neuronal tissue here and there, causing the microglia to blow up ten times more neurons than they just ate. The sad fact of the matter is that you just can't attain MIC (minimum inhibitory level) levels in the brain. You'd sooner die of doxy-poisoning. Microbiologists say that you'd need at least a gram a day of Doxy to start making a real dent, to start attaining bactericidal instead of merely bacteriostatic levels. But a gram a day lands you in the IC ward with multiple organ failure, as we can read in the medical literature. A man ended up there after having taken a gram/day for a year. Fortunately the damage was reversible.
I decided to put my theory to the test and from then on, my treatment went thus:
1. Interrupt treatment. Wait until you start feeling the first "real damage" symptoms. In my case this is when my muscles started to twist uncontrollably, when I get cerebral or coronary vasospasms or when I become very irritable. Then do not delay but start treatment immediately.
2. Keep treating until those symptoms disappear again (usually in a single day or two), and treat a few days more. In my case, I feel really bad during those days. I basically treat a day or five until I can't handle the headache and "toxic" feeling any more. Do not use overly high doses because this may provoke a severe immune response (brain damage) that will take many days to subside. Fortunately, the brain is very capable in regenerating itself and routing around damage.
3. Go to step 1.
What this intends to achieve:
A. To never let the bacteria multiply significantly, because you never allow the symptoms to worsen. This limits the direct damage done to your CNS.
B. To never provoke your immune system too much. You will cause a limited immune response only, by never letting the bacteria grow too much. This limits the indirect damage done to your CNS.
C. To "smoke the bacteria out of their caves". They keep being on the run and getting killed. They keep being switched from DEFCON 1 to 5 and back to 1 again. It takes bacterial resources to have to envelop themselves in a protein sleeve (the "cyst"). Some transistions are unsuccesful and lead to the death of the bacterium. Just when they think all is well and they come out of their hidey-holes again, they're being bathed in antibiotics. That will cause them to drill into your braincells again together with the immune response that provokes (not a "herx", an immune response!) but you have to choose the best of two evils. This approach yields the best killing kinetics paired with the least immune response that still is as effective as can be.
I can report that my new approach has resulted in very significant improvement. I had reached a plateau where I could function pretty well but I was still too ill for much physical activity or much concentration. All that has changed for the better since I follow this pulsing protocol. I think this is significant, seen the fact that I have take doxycycline for the past 13 years and had reached a point of little improvement a long time ago. All in all I now use less doxy than before.
Someone pointed out to me that certain anti-epileptic drugs greatly reduce the tissue half time of Doxycycline:
After nearly a year of taking frequent long breaks (days to a couple of weeks) between taking antibiotics, I find myself slowly deteriorating, and every time I am on antibiotics, the "herx"-like symptoms increase. So, sadly, the approach described above is not a panacea and great care should be taken not to lose progress gained over years of non-interrupted treatment.