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

DOXYCYCLINEI 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

eurekaHalf 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.

Notes:

Someone pointed out to me that certain anti-epileptic drugs greatly reduce the tissue half time of Doxycycline:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1610633/


UPDATE

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.

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1.  jill    Thursday, September 17, 2015

hmm why would you use helium to kill yourself when you could use nitrous oxide, ie laughing gas which is relatively easy to get and is a anaesthetic? helium is just effin stupid.



2.  Sarah Vaughter    Thursday, September 17, 2015

The only person "effin stupid" is you. Nitrous oxide is totally unavailable in most European countries, and I live in Europe. Whereas Helium is available from every party store, online. The only caveat is that some manufacturers add Oxygen to their gas.

If you knew anything about physics or suicide methods, you'd know that Helium works just as well as Nitrous oxide. Any and all inert gasses work for that purpose. When I say: "Works just as well" I mean that when done properly, you'll be unconscious in seconds and you'll never notice it.

You assume people are "effin stupid" because you have a myopic, incomplete and partially erroneous perception of reality.



3.  Jade    Sunday, September 27, 2015

I am currently pulse dosing as an attempt to see if what they are finding in these recent persister studies is true. From what I have been told they used anywhere from a 5 on 2 off to a 5 on 5 off schedule. Right now I am doing two weeks on 1 off. I feel good off for a day or two. By day 4 or 5 I am obviously sicker and by a week to a week and a half the muscle weakness/aches make it difficult to function, seizure-like episodes, pressure near my brainstem with speech problems and so on. I do not feel comfortable going that long without treatment. I start getting severe respiratory attacks and feel like I'm gonna die, and I believe I nearly did last year. I'm thinking that if I go off its gotta be 5 or less days when symptoms are just starting to get worse. Also I appreciate the info on Doxy needing to be refrigerated. I might have been getting some negative effects from that. Increased pressure like a vice and ice cold burning sensations in my brain which obviously effect me psychologically. I do get some benefit both from Augmentin and Doxy. Also, Azithro seems to help too. Do you know of any studies that suggest drawback to taking Augmentin versus straight Amoxicillin off hand?



4.  Sven Fost    Saturday, October 3, 2015

Hi,
I got mine in 2005. I had no real problem for the first 7 years, except that I needed parts removed once in a while (intestine, gallbladder, vertebral disk...). Each surgery increased the neurological problems. Sadly the brain can't be removed so easily. It's not a useful organ to watch the Kardashians on TV all day long, but I'd rather keep it for my hectic conversations with my cat.
My first Elisa was 5 years after the bite and the first Western Blot was 10 years to late. No need to say that it's all negative. I just have positive babesia and bartonella blood tests.
I started oral antibiotics a year ago and IV a couple of months ago. And things are just getting worse and worse. I totally understand this felling of being 120 years old and dying. Despite my obvious problems and operations, I've been abandoned by my insurances, social services, job, friends and family. It is as if the whole universe in unison whispered in my ear: Just die! Somehow I can understand them, as I've become a self-absorbed temperamental sociopath. I'm currently isolated in the mountains with no revenue, hacking into my neighbour's WiFi. I'm in touch with a US specialist over the phone who prescribed pulsed IV doxy. And I'm just feeling 5 years elder every day. The good thing with a catheter, is that I won't have to be creative the day I've lost hope: I'll just have play the trumpet... or fart: the most ridiculous death ever.
Well, I shouldn't talk about it yet. Let's keep hope, that's all we have left. The thing that keeps me going on is the desire to spend the rest of my life fighting against all these stupid doctors and insurances the day I'm back on track.
A product that helps me a lot is a mixture of fresh turmeric and artemisia absinthium. Absinth is never prescribed due to the bad reputation of thujone, but the side effects are not noticeable compared to the effects of neuroborreliosis. It exists in caps, but chewing them fresh is much more efficient (it probably goes further down the intestine). I grow absinth in my garden with other types of artemisia, but it's the most efficient. I also use antioxidant vitamins and CoQ10, but I'm not sure it helps.
Another thing that helped is adding smileys in a calendar when I'm OK. I've noticed, that as I'm loosing memory, when I feel bad, it feels like I'm bad for months, although it could be just a couple of days.
I'm gonna put a smiley for today. As I'm able to write this stuff, I guess I'm not yet totally lobotomised.
Keep hope and us posted!



5.  A Cashman    Tuesday, March 29, 2016

As always, I love reading your stuff. Thank you. Also, thank you for being honest. We are all human Guinnea Pigs with this complex illness. I haven't wrote in for a while but thought I'd give you an update. My husband and I were both infected with borrelia and most probably Babesia, Bartonella, Mycoplasma, and probably more. The only positive we had for sure was the Extended Western Blot through Igenex. Our LLMD thinks the coinfection tests so poor, he doesn't even give them. So, we went mainly by symptoms.

Anyhoo... we used a pulsed antibiotic regimen created by Dr. Jemsek from the documentary "Under Our Skin." We would use 3 different antibiotics MWF and then pulse in Metro or Tindy on TH and FRI for 2 weeks. Then we took 2 weeks off everything. He would combine intracellulars with anti parasites and then obviously hit with a cell wall buster. We felt like train-wrecks over the weekend so I can attest to the ability of Tindy/Metro to kill all 3 forms of borrelia.

When things plateaued we'd change up the meds. Also, as we peeled back the layers, other symptoms would crop up that weren't there before. For instance, I had no known Babesia symptoms until a while in treatment. I believe when the borrelia load was lessened I was able to detect the underlying Babesia (shortness of breath and such).

Since cognitive issues were pretty bad I did take Minocycline daily for months. It really helped. Also, when we fought Bartonella we treated daily - on the weeks OFF abx we used Master Herbalist Stephen Buhner's Bart protocol with herbal tinctures - of which we herxed as much on them as we did the abx.

I stopped abx when I stopped herxing.

So, fast forward 3 years. We are off ALL abx and doing very well. I'd say we are about 96% home-free. We are on an herbal capsule program that we dose 2X/day to rebuild and there are some antimicrobials to keep things at bay. The one thing that really helped me in my current state is WobenzymeN a systemic enzyme. Truly - it took my neck pain away. It did not work while on abx treatment which shows me that the pain then was due to infection, while the pain now is due to an immune system response.

I agree with you that some of our symptoms are due to a hay-wire immune system. The challenge, of course, is figuring out what is what.

Blessings on your journey, Sarah,
Alicia
Madison Lyme Support Group



6.  Domi    Thursday, March 31, 2016

You could also be feeling better because you have been poisoning your body with doxy for 13 years and with pulsing are getting less stress on your organism.



7.  Greta    Monday, May 2, 2016

Have you ever tried a combo routine of antibiotics and detox remedy? My Llmd is using that with me. The detox agents remove the toxins. Even lemon water is a good antioxidant..find and all. Garlic, turmeric, black tea. God bless hope you find a balance for your system. Having Lyme is not easy.



8.  Sarah Vaughter    Monday, May 2, 2016

Lyme "detoxing" does not exist:

http://owndoc.com/lyme/lyme...



9.  Greta    Monday, May 2, 2016

So what is the cure? How do I kill all these invaders? I want my life back and can't think straight. Sarah please share more.



10.  Sarah Vaughter    Monday, May 2, 2016

There is no cure, but one of our people is working on a possible one, however crazy and scammy it appears, it's very serious:

http://maglyse.com/

But this will be limited to hospital use only, and it will take many years to be developed, IF successful.



11.  Sarah Vaughter    Monday, May 2, 2016

Correct. But when I stop Doxy, I get slowly much worse. After at most 5 weeks (my record), I am sick like a dog and it takes months to recover again to the previous situation.



12.  Sarah Vaughter    Monday, May 2, 2016

Augmentil will kill you, when you take too much. The clavulanic acid will destroy your kidneys. whereas straight Amoxi is wholly non-toxic (I took 24 g/day for weeks). Amoxi + Probenecid is associated with treatment failure as per a The Lancet article. Amoxi only penetrates the bbb in case of encephalitis/encephalopathy. As soon as that is addressed by the Amoxi, the benefit will disappear - the Lyme itself will not be eradicated by it.



13.  lymesuffering    Thursday, May 5, 2016

Sarah Vaughter, can you please email me? My email is daughteroftheking8888@gmail.com I need some advice about Lyme.



14.  Sarah Vaughter    Friday, May 6, 2016

I do not give personal advice any more. I have absolutely never encountered, in the 15 years I gave such advice, anyone who followed it. Neither is giving medical advice lawful for me, neither do I have time for it, sorry.



15.  lymesuffering    Friday, May 6, 2016

Ok, sorry Sarah. I"m just sick, dying, poor with no medical insurance and no money for doctors. I"m on my own taking fish antibiotics for the last year.



16.  Sarah Vaughter    Friday, May 6, 2016

That's bad.. I also get no help from doctors and have been taking black market antibiotics for the last 16 years. All you need is Doxycycline and that is very cheap, when bought in bulk from China or India. It costs nearly nothing and can be declared as "pigment". You can capsulate it yourself with a cheap capsulator you buy at amazon. Don't take it uncapsulated bec. it will burn your esophagus.



17.  lymesuffering    Friday, May 6, 2016

Cheaper than the fish doxy? I get that off ebay for pretty cheap. I"m just tired of all this bullshit. To top it all off, the spirochetes have invaded the lining in my bladder and have given me an extremely painful condition called interstitial cystitis. Because they invaded my bladder wall, it left it open to opportunistic bacterial infections. I've been batting a bladder infection for 1 year now and I still have it. My lungs and sinuses are shot. I'm only 48 years old........so tired. I'm taking cayenne pepper capsules to break biofilms, but I don't know if it's working or not, I should take serrapeptase instead.



18.  Sarah Vaughter    Saturday, May 7, 2016

In large qty, yes.

Your comorbidities sound familiar. It's a terrible struggle.

I do not subscribe to the "biofilm" concept in Lyme disease, I am pretty certain it is not an issue in vivo in humans, when antibiotics are taken. Biofilms only occur in untreated infections, as far as I understand the issue and the research.



19.  lymesuffering    Saturday, May 7, 2016

I"m so tired Sarah, and some days I feel like giving up. But, I can't. I have a family that needs me, I have obligations and responsibilities, but it's so hard. I'm also taking low dose naltrexone that I bought online myself, and I feel that might be helping, I don't really know. I live in a cabin in the mountains and I think there might be some mold, which I can't afford to fix so I'm going to try and sell this house now, which is a monumental undertaking when you're sick. When I first got this, almost 4 years ago now, I came down with flue like symptoms and burning nerve pain that spread through my whole body. I had a fever for 1 year and burning nerve pain that felt like I had 2nd or 3rd degree burns on my whole body and muscle twitches 24/7. I had to lay on ice packs covering my whole body every minute I was awake. This lasted for 1 year and then it finally subsided. I still have the twitches, but the burning nerve pain has mostly gone, thank God. I just have a little bit of it at night and it's only on my back now, the rest of my body doesn''t burn anymore. But now it's in my bladder, lungs and sinuses and that's hell too. We are poor folks, can't afford medical care, so I laid in bed for 1 year waiting to die, but I didn't die. Maybe I will fully recover someday, I hope so.My family doctor did say he thought I had some kind of mosquito borne illness, but without expensive testing, that I couldn't afford, he didn't know what I had. He put me on nerve pain meds and that was it.



20.  Sarah Vaughter    Saturday, May 7, 2016

Sorry to hear this. I went through similar years of utter misery and still regularly think of suicide, but we have six employees and my husband to think about. This is a deadly disease and even with absolutely perfect antibiotic treatment you only improve very slowly until you plateau to a halfway endurable level. I've been there - Ambulance to the hospital, saline solution drip, full ECG and on oxygen - multiple times, years and years after starting antibiotics.. tested IgM-positive after 5 years of 600 mg/day of Doxy.. Incontinence, collapsing in the street, very severe waking apnea, vasospasms, tachycardia, extreme fatigue, paranoia, paralysis of my left hand, unable even to stand for longer than 30 seconds, a hundred more symptoms. I've had a localized headache for the past 16 years for example. It's so bad that I often wake up in the middle of the night and can't sleep for hours when that happens, neither do I fall asleep until hours have passed and I have become exhausted.

All I can say is: It does get better when you take the correct antibiotics. My advice is always to stop taking anything else but the correct antibiotics. I do not believe in any other substances apart from a healthy diet. I pulled myself from near-dying to being able to function a couple hours/day, just with Doxycycline and periods of Minocycline, and I even survived years of invasive Candidiasis in my eyes, lungs etc. that needed three years of daily antifungal medicines that I had to import from India. No doctor in Europe will treat or diagnose chronic Lyme disease.

Keep going strong, up your dose of Doxycycline - 500 mg/day should be the absolute minimum for a person of average weight. Anything less and you'll die a horrible, drawn-out death. I've taken 800 mg/day and had tremendous herxes and improvements.



21.  Greta    Sunday, May 8, 2016

What will work?



22.  Sarah Vaughter    Sunday, May 8, 2016

Tetracycline, Doxycycline or Minocycline in the correct doses can very slowly reverse or at least stop the progression of the infection. There is no cure.



23.  Liz Lowe     Tuesday, May 10, 2016

Lymesuffering;
Doxy can lower estrogen and cause lots of bladder pain. That cayenne pepper would kill me. I've had I.cystitis since a child. Worse when bit and got meningitis lyme 27 years ago.
Only cure is contraceptives and bactrim , usually just 1 , for flare up. Ive used all my life, to control bladder pain.
When on doxy or tetra. Estrogen falls and I have to take more contraceptives to kill pain. Can fix in hours when doxy aagrivated. so i pulse with others to get break from .
This is probably the vegal nerve ( I have cns lyme ,vegal nerve giving constrictions heart tracks lung clots( from constrictions) vasospasms . , all of it) irritating the bladder, and causing infections sometimes, but many are inflammation pain.
The hormones plus NSAIDs, plus abx reduced surging bp hr. channel blockers of coarse for vasospams, lots of it.
I got new tick 2 weeks rash, air hunger back, had adrenaline surges, gives heart vasospasms, so need some doxy.
I will never live with bladder pain , my whole childhood I did.
Very hot baths can scramble pain pretty well, a little Tylenol helps too.
Most I.S. Patients are only helped by contraceptives, but controversy abounds. I learned from dr.book 1992 , never looked back.



24.  Liz Lowe     Tuesday, May 10, 2016

Also I forgot to add, until bladder heals, no cultured anything, cheese, soy sauce sour cream ,yogurt etc. nerve interprets as body infection, lots of . Pain. no caffeine , extremely painful , scratches bladder lining, livens nerve pain too. That cayenne old also be out.
You can switch to other affordable abx besides doxy or other cyclines , that wont hurt estrogen levels and consequently hurt bladder.
I pulse with augmentin, helps nuero transmitters work when clauv. acid ( lactamese inhibitor) added. Good brain fog etc, which is just vegal nerve behaving badly.
Can boost with reg. Ammox too. Bactrim works for bladder but lyme as well(blood brain barrier) . Once on contraceptives, most infections go away. Or very mild. Bactrim like I stated 1 pill can take care of, obviously not a raging infection. But after years you get to know right away. Even dr, agree .
I hope u feel better fast. It is possible.



25.  Sarah Vaughter    Tuesday, May 10, 2016

Amoxi does not penetrate the blood-brain barrier in the slightest, except when you have encephalitis, which only severe Lyme patients have. Amoxi cures that encephalitis, so after a few weeks, Amoxi has no effect anymore. Augmentil will kill you when you take large doses of Amoxi. Probenecid caused greatly increased treatment failure.



26.  Sarah Vaughter    Monday, May 23, 2016

It's complete nonsense, read my article:

http://owndoc.com/diet/ph-b...



27.  PharmaRebel    Monday, May 23, 2016

I have read your article, and I am completely serious about adjusting body pH to a higher alkaline state in fighting infection. To know if it provides relief is basically adding some baking soda to tap water and drinking it for a few days - I've used 1/2 teaspoon per glass twice a day and have either had a major "Herx" (initially.... a positive sign itself, I think) or felt very good for days after. This dose is very high compared to references I've found, though I've not found that this dose short-term is high-risk (do your own research, of course). I do not see anywhere in your article that you tried this approach.



28.  PharmaRebel    Monday, May 23, 2016

In addition, celery juice is a natural diuretic and can help flush out the endotoxins - don't know if you tried that either.



29.  nikki11369    Tuesday, May 24, 2016

The entire first half of your article describes my life entirely, with the addition that my Tremors and weakness extend above my legs, when it's really bad it's in my arms and chest and difficult to breathe. A lot of people seem to think I am describing Guillian-Barre syndrome. I agree it sounds much like that too. But it's day 123 since I woke up one morning unable to walk or catch my breath. I seem to have discovered, by fluke, that this ibuprofen regimen I've been on, if I skip it for 24 hours, I lose complete use of my legs and the paralysis creeps up into my chest cavity threatening my ability to breathe. I read earlier on another Lyme doctors website about it being a chronic inflammation condition. I believe he is absolutely right. Anti-inflammatories are probably the only thing keeping me from stepping into traffic right now. It does nothing for my pain, but I believe it keeps the weakness lesser and aids in my breathing. My most recent emergency room visit last week and subsequent hospitalization I finally was able to obtain the Western blot. You know they didn't want to do it of course. I got the results yesterday two bands positive, one critical band specific to Bb, IGM 23. But since I don't meet their CDC criteria of 5 bands, they won't see me, calling it negative for Lyme. So again I'm basically sent home to die, or figure this out on my own. I requested a LLMD referral from ILADS but have not heard anything yet. In the meantime I'm considering ordering my own doxycycline online overseas and just taking matters into my own hands. What other choice do I really have at this point?



30.  Sarah Vaughter    Tuesday, May 24, 2016

You have NOT read my article, or you have not understood any of it, or you think the article is nonsense. As I show, it is impossible to make the body even slightly alkaline. The body will not allow it. If the body would permit this for even one hour, you'd die. If you have scientific facts that disprove my scientific facts, let us know.



31.  Sarah Vaughter    Tuesday, May 24, 2016

"Endotoxins" are complete nonsense, read my article here:

http://owndoc.com/lyme/lyme...



32.  Sarah Vaughter    Tuesday, May 24, 2016

I greatly improved over the months and years (since 1999) and am still staying alive on just Doxycycline.



33.  Steve    Monday, July 25, 2016

You are not alone in this, where are you at now? any better?
I am looking into Stevia leaf extract
stevia-kills-lyme-disease-pathogen-better-antibiotics-preclinical-study

I am going to give it a try, so tired of doxy



34.  Asdfghjkl    Friday, September 9, 2016

I was on doxy and amoxy for years, and did not wind up having a bacterial infection after all, instead an opportunistic fungal/yeast overgrowth. A single 200mg fluconazole brought amazing relief. When money was a problem, ketoconazole did just as well if it returned. The lining of my bladder came out in pieces.

Do not drink alcohol, eat a sugar free diet. To prevent further colonies, drink unsweetened cranberry juice, take cranberry capsules, or take D-mannose.



35.  Bartonella    Monday, November 21, 2016

If you deteriorate fast after quiting the antibiotics you might have a Bartonella infection. Bartonella is not easily treated and a combination of 100mg minocyclin 2x daily, 250mg azithromycin 1x daily and rifampin 600mg 2x daily or even 900mg 2x daily is needed for at least 6 months.

To reach these doses without problems they start with:

1 month of minocyclin 100mg 1x daily.

1 month of minocyclin 100mg 2x daily and azithromycin 250mg 1x daily.

1 month of minocyclin 100mg 2x daily and azithromycin 250mg 1x daily and 300mg rifampin 2x daily.

1 month of minocyclin 100mg 2x daily and azithromycin 250mg 1x daily and 600mg rifampin 2x daily.

6 months of minocyclin 100mg 2x daily and azithromycin 250mg 1x daily and 750mg rifampin 2x daily.

All treatment is stopped at this point.

NAC, niacinamide and multi-vitamins and probiotics are used next to the antibiotics. The NAC breaks down biofilm, niacinamide does also and probably helps with candida too. The probiotics help to maintain gut health during this regimen.

Rifampin must be taken on an empty stomach and minocyclin and azithromycin need to be taken away from supplements at least 2 hours. Taken with food to lessen the impact on the gut and not food with high calcium, magnesium or other minerals like cheese or milk.

Bartonella is one of the main reasons Lyme patients stay ill.

Another treatment that is used for Bartonella is Levaquin 500mg once daily. This reaches all the compartments where Bartonella survives, the bonemarrow, the brain, intra- and extra-cellular places, within red blood cells and needs to be taken for 3-6 months along with supplements that break down biofilms. Combining it with minocyclin 100mg 2x daily is a good combination therapy.



36.  Bartonelal    Monday, November 21, 2016

The release of OSP-A, one of the 3 outer-surface proteins of Borrelia and some internal fragments stir up the immune-system creating the 'jarish-herxheimer' reaction.

By using glutathione and glutathione precursors you can lessen the herxheimer and help flush out these particles. The response of the immune-system creates substances that need to be flushed out.

Bartonella creates lipopolysacharides that impact the immune-system. With Bartonella die-off you can have a release of endotoxins (scientifically proven) that create mood instability and cause panic-attacks, rage and other symptoms.

More than drinking enough fluids, taking anti-inflammatories to manage pain and try to use some glutathione or precursors of it during severe herxes you cannot do.



37.  Bartonella    Monday, November 21, 2016

Alkaline body is bogus... bullshit from the supplement marketing business.

You can take baking soda and temporarily cause a less acidic environment in your gut which is not a good thing because that acidity is a way to protect you against pathogens.

Your body cells don't become alkaline, even 1 ph point change would cause you to die.

Hydrochloroquine that is sometimes used next to antibiotics causes the intracellular compartments of macrophages to become more alkaline and that causes the antibiotics to be more stable in intracellular space.

That doesn't mean baking soda does anything similar. It doesn't. It has no effect besides cause a temporarily shift in acidity of the stomach and have a laxative effect.

That you feel better is or placebo or coincidence.



38.  Barbara    Thursday, July 6, 2017

For 35.

Bartonella, what did you find to be working for Bartonella when caught in its early stage (within one month)?


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