Saturday, May 30, 2009

Life Is Good Intravenously

Okay, I never in my wildest dreams thought that I would end up with a central PICC line getting IV Claforan but I am, and I do, and I am happy to report that I am at last feeling like my old self. I wake up with enthusiasm for life. I have energy to do things. My night sweats are almost completely gone. I am experiencing some flare up of dental sensitivities and shoulder pain and when treatments began I had numbness and leg pains, but nothing too bad.

Getting the intravenous line was interesting. I could not go to the local community hospital as they had recently revoked hospital privileges for a physician referring patients for PICC lines to treat chronic Lyme. This is the same hospital who's infectious disease director had informed me that he did not believe in chronic Lyme.

So I went to another hospital 5 miles away. Fortunately this hospital was Lyme friendly. The staff were understanding and accustomed to seeing Lyme patients for PICC lines. It was so nice to be treated like a normal patient, to have people interested in my symptoms and what treatments I had been doing. It was amazing to feel "cared for."

One of my hospital nurses mentioned that she had had Lyme, but had been "treated." When I asked her if she was all better she mentioned that since her infection she had suffered from anxiety and trigeminal neuralgia that was not improving. When she saw that I was being treated for trigeminal neuralgia from Bartonella she took information to get tested again.

The visiting nurses report to me that approximately 1/2 of their IV patients are Lyme patients.

Thursday, May 21, 2009

Short term Intravenous for Bartonella

After 5-6 weeks of Rifampicin and doxycycline and Azithromycin, much improved but not fully better. Symptoms that have improved: brain fog, memory, ambition, mood, shoulder pain and dental sensitivities. Initially all of these symptoms worsened but now are better than before Bart treatment. I have been more funcional from 10 am to 3 pm- but the nights are still horrible.... night sweats and cold chills with joint pain and a feeling of being poisoned. My mood had been great on Rifampicin but after doxycycline was added it gradually worsened. This is the second time that doxycycline has caused severe depression in me and when I looked at the literature there are clear reports of doxycycline-induced depression and psychosis.

I had (phone) consult with Dr S and he has advised that I do 4-6 weeks of IV Claforan, in addition to Azithromycin Monday through Friday and Flagyl on the weekends. He feels most of my symptoms are Bartonella and Claforan is much better for Bartonella than other IV drugs. He said the fact that I am having the sweats within hours of the Rifampicin and the hypersensitivities in my nerves (teeth) and mood variablity point to Bartonella. He is seeing improvements in patients with Bartonella symptoms with this protocol......I firmly believe most of don't get better because of untreated co-infections- particularly Bartonella.

I am having my line put tomorrow. I will continue to do Zhang herbs and my homeopathics. He also recommends Transfer factor which I am adding- will keep you I never thought I would do an intravenous but feel like it's time, for a short period.

Monday, May 11, 2009

Morning Blues

So here is the morning dilemma for most of us. We are on treatments- herbal, antibiotics, supplements. We are doing better i.e. we can think, our headaches are not keeping us in bed unable to speak, we can eat though most foods are joyless, we can tolerate some noise and light, we are doing okay. Nights are still hellish episodes of heat and cold and sweats and aches. Your family looks at you in the morning, gauging where you are, how you are. Should they ask? Should they offer? So you say it, "I'm okay." What does that mean? Will you still get some help? Will they understand that you still feel as though you are fighting a flu with a touch of madness? Do you take Motrin or Nux vomica, up your vitamins C, or try that inspirational tape that helped so much 3 months ago? Do you go online to see who is posting a new hope or will that just depress you? Are you fighting your daughter's cold or is it the Monday blues? Is it a one year anniversary of treatment or is it the middle of a new protocol designed to kill cysts and 2 co-infections all in one fell swoop. Do you need an IV or a vacation? You are not bad, but you are not great. The weird thing is that if I can fight and power through and not think too much today will be okay. My mornings are like this.

Saturday, May 9, 2009

Catching a Cold: A Good Sign?

I was told (and experienced) that when you are very sick (with Lyme/Co-infections) your body will not recognize most viruses. The up side of this is that most people with chronic lyme (and chronic fatigue for that matter) do not catch colds and flus. Their immune system is too dysfunctional and overwhelmed to bother recognizing (trite) viral infections.

I view Lyme as a disease with layers. Until you treat Babesiosis and Bartonella you cannot begin to really rid the body of Lyme. And, until Lyme and Co's are treated, you can not get at Mycoplasma, and other chronic viruses harboring inside your cells/tissues.

Many people have chronic infections but if they are in good health there is no problem. For instance, Chicken Pox goes dormant, and only if you are under stress, aging, or worn down, will you get Shingles. Everyone accepts that. It is no surprise then that as you treat your Lyme and Co's you may not get fully better because of lingering (reactivated) EBV (Epstein Barr), HHV (herpes), CMV (Cytomegalovirus), or other viruses.... This is why many of us don't get fully better.

I do believe viruses are treatable but you can not begin to treat them until your Lyme/Co's are under control/gone. There are antivirals (not that great from my experience, but some people do get better with them. There are many herbal/homeopathic soulutions for viruses- Zhang uses Olive Leaf, there are many more (Berberine, Coptis, Clove Oil, Pleomorphics ....) And of course on top of all of this you must detox, (support the liver), heal the gut, and control (autoimmune) inflammations......It is a (solvable) puzzle, but no quick fixes.

So you can see why I was sort of excited when I finally caught a cold (first in 2 years), but unfortunately that unleashed my Mycoplasma, that I am now mopping up. I am however doing better now...nights are always worse -- why is that??

Friday, May 8, 2009

I Feel Normal

I feel normal today. This is simply amazing. Not sure why. Was it the gluten-free bread or a week of rest? Was it crying enough, forgiving enough, asserting enough, killing enough bacteria and spirochetes? What is it that makes us better one day only to drop away from the grace of normalcy tomorrow? Is getting better slowly more functioning days, coming on the heels of feeling as if I am relapsing into Babesial migraines. Is it the homeopathy, yoga, or doing nothing but watching Oprah discuss infidelity and working girls? Some days I am quite certain that I know how to treat chronic Lyme. I feel smarter than my doctors, sharper than my therapist. I am certain that it is the current antibiotic or supplement that I discovered in the vitamin shoppe next to immune boosters.

My mother-in-law warns me that I am becoming obsessed with my illness- though she readily admits that she could possibly do the same. We do. We obsess. It is hard to stay away from forums and chat rooms, the articles from 1994 that discuss Cerebral malaria,"a little like Neuro-Babesiosis." I believe the tick that bit us made us need to seek out other infected people, share symptoms and remedies, critique our doctors and politicians, and read about anything to do with tick-bite illness.

I feel normal but I still can't eat food that is not warm, use my right shoulder fully or book a client. My normal is not reliable. I have no way of knowing how long it will last or how good it will stay. I can not plan to go to Greece or volunteer regularly at my daughter's school. My normal is so unreliably changing, it is a secret. I whisper it to myself. "I feel okay today." Yes I sweated and ached in the night but today I feel happy, good, strong. I only tell the people that I can trust as I am afraid to lose the little bit of sympathy, help, understanding that I do get. I look so good, after all.

Thursday, May 7, 2009

Not Sure Who I am Any More

I am not fully sure who I am any more. This could be Lyme talking or it could be me, recovering from a lifetime of doing everything for everyone else. Lyme could be unleashing the real me. The independent self-indulgent-pleasure-seeking-don’t-give-a-damn –about-anyone-else-me.

I have been sick and not required to do anything for so many months that I can no longer discern duty from desire. From rest and sloth, from greedy desires to stay in bed and eat bonbons or self-discovery at the age of 52.

I have been so very good. I have literally saved many lives-too many to even count. I have lived on 4 continents, completed 2 internships, tested with 7 medical boards, raised 6 children, married twice, cleaned and lived in dozens of homes, cooked millions of meals, with endless pots of macaroni and rice pilaf, listened to thousands of women tell me about their menstrual cycles and lack of sleep, watched hundreds of soccer game in the mostly bitter cold northeast, picked up noisy carpools, listened to girlfriend’s infidelities, read books I didn’t’ really even like for book clubs I didn’t enjoy enough. I think that I am done. I hope and I pray that I am done. Done appeasing, applauding, and wondering. I am tired out. Maybe that’s why I got Lyme. Like all those self-helpers out there say, “You create what you need.” Or “you get what you deserve “You plant the seeds of your bounty”. ….or what ever the saying is for what I feel.

I am sick of swallowing pills and waiting to see how many hours until something arises- like nausea or headaches or crying jags. I am sick of moping and wondering when it will end; what I should be doing and why I am not doing things better, quicker, fuller, happier.

I am sick of driving to doctors and hoping for some new improved way of thinking, a clue about how my body is really doing. Is the battle being won, or am I at Waterloo, or the Battle of the Bulge? Is it the Revolutionary War or the Civil War or The War of the Worlds- that never really happened except to a few dopes who happened to listen to the radio at the wrong time. They didn’t’ hear the preamble, the warning that this was only a story, an amusement, or a test,…nothing but a test.

Isn’t that what it feels like after all? I mean I have a disease that doesn’t exist to most, that causes doctors to live in fear of losing their license to treat you. That people don’t get. A disease that has countless infections that don’t test positive. A disease where if you test positive it is a good sign because at least you are mounting a response, unlike the unlucky f..ers who just feel like sh..t and don’t test positive to anything and are told to take more Celexa, or Ambilfy.

I went to a conference with a Lyme expert and he said if you had a science fiction movie disease it would be Lyme. It (Lyme) can do anything. It can travel through tissues faster than blood, it could go anywhere- do anything. Make you numb, give you toothaches, swell your joints and then just as rapidly, unswell them. It can make you think you are unlovable, cloud the smartest brain and ring eardrums while you sleep. It can make you cry in the middle of the night when you least expect tears. He said that it(Lyme) can tease your immune system- stick its tongue out at your blood cells and then within seconds join its head to its toes and flip inside out so your white blood cells never even saw it. Even your cells are confused about what is happening around it. Am I infected or healthy? What is going on?

Add to this some germs that behave like malaria. Live happily inside your cells only to burst out, unannouced when it pleases. An unwelcome guest inside your brain. Named like a cute storybook character, Babesia. It sounds huggable and sweet, like the cartoon deer that lost its mother too young. Despite its sweet label , it gives you sweats and bone breaking chills and headaches that feel like you have entered a Bosch painting of Hell. It makes you dizzy and irritable. It makes you think of ways want to kill noisy children, machines that whine, or people who speak loudly. It makes you fell dizzy, like an unsettled boat- one minute you are about to fall in murky water.

Add to this a bacteria that sounds like an Italian pastry or a special pasta dish. The waiter would roll the words “Bartonella” off his tongue and it might sound tasty. It is perhaps the cleverest of all infections because it so very subtle. You and your doctor do not even think of testing for it. And why bother, as it is nearly impossible to test for, and even harder to treat effectively. It is so subtle it just makes you feel cranky and as if you woke up on the wrong side of the bed. A little sorry for yourself. It is indeed self-indulgent and slowly it whittles away at your self esteem and convinces you that in fact you are unlovable. It can make you believe every bully that you have internalized inside your brain. Every insult thrown at you as a child or a full blooded adult. Ahh, Bartonella perhaps the cruelest infection that give you stretch marks, burns your bones and toes.