California US
Maybe my story will help someone see if it could be related to theirs.
I woke up unable to turn my neck with painful muscle spasms early in the morning Jan 1 1985. I don't remember what I had done for New Years evening that year, but I do remember I had wanted to go in to work for many hours that day, and I went but had to turn my whole body to look at anything, because I couldn't turn my head/neck. I was treated with muscle relaxants and motrin and this gradually went away over several weeks. It recurred some time later, and then again.
It was my onset of myofascial pain syndrome. Not necessarily of Lyme disease. I had night sweats for a very long time, and can't remember when they started. I had been hiking of camping sometime in the past, because I was always hiking sometime in the past. Probably not the immediate past-December is pretty cold even in California. I had only been back in California for 6 mo, then two months in Maryland, a year in Ohio, a month in Canada, a year in Ohio, a month in Europe. Lots of camping and hiking in the eastern forests when I had a chance.
At that time-85- I had a very stressful job and marriage, and had intermittent slowly worsening MFP and had migraines for a long time. This didn't seem like much in that context. I didn't pay much attention to it, didn't see my doc often but mentioned it when I was in. I got some injections and stretch and spray, went to some PT, I saw a chiropracter, but never asked for pain meds other than motrin. I was tough and knew I could handle anything. This was not going to be a big deal in my life.
When things smoothed out a lot, I got the perfect job I wanted, a pregnancy I wanted with the man I wanted, I started getting worse. But I was practically geriatric for pregnancy, and noone respects complaining women, so I didn't. I had the baby at 39 and never recovered, instead developed full blown fibromyalgia and chronic fatigue, not called syndrome because it was ascribed to pregnancy and childbirth with complications, then to having a newborn.
I only got worse as the time went on. The pain stopped going away, but was constantly present, and spread to more muscle groups. I developed burning eyes and blurring vision when tired that was not apparent on eye tests. The fatigue was like a wall in front of me. I stopped working two jobs. I stopped working 12 mo. a year. I stopped 40 hr a week, and I still couldn't quite manage.
I went home from work to sleep before picking up the baby from day care. I lived on motrin, til I got an ulcer from it. I did more PT, I saw another chiropracter. I also had trouble with my marriage, and got very irritable. I think some of it was definitely the spouse's fault, but I suspect some significatn amount of it was the hyperirritability that can come with Lyme disease. My memory is not good enough to recall well enough to analyze.
When I found a paper describing fibromyalgia after Lyme disease, I thougth that was it-I had alreayd had numbness and burning. A western blot showed a single band-not at all diagnostic, but I found an ID doc willing to let me take doxycycline even though I only had one band positive-"a negative test". I started getting better-I lost the numbness and burning, though not the muscle pain.
Then my insurance changed to managed care and I had to see a new PCP. I chose a decent one, someone I had known a long time. And it occured to me to ask if the baby could have been infected in utero. The PCP didn't know, understandably. He insisted on my going to The Doctor of Doom, Armstrong. He "GUARANTEED" I did not have Lyme and would not even answer the question about if I did, could baby Jamie.
All downhill from there. I managed to barely keep working three more years. The pain escalated and escalated. I was unable to stand for long, then unable to sit for long. Going out with my family for anything long was out, it ruined our life. I got a wheelchair so I could do things with my child. It helped at first. But I got tired, to where even sitting was exhausting. Eventually I got a reclining wheelchair, so I could go out of the house for more than an hour or two with my family.
Meantime I was getting neurologic symptoms. First I became aware that I was getting wrong answers in my math puzzle puzzle books. I had done these since around age 14, and I should have been able to do all of them without mistakes, except maybe the hardest one or two at the end of the book. Instead I was having pages in a row where the mistakes were so dense I couldn't clear them up and would just leave them labeled mistake and go on. When I got done with a book and looked back and found areas where 3 out of 4 pages were labeled like that, I knew something was terribly wrong with my brain. It wasn't just that I was arguing more and people were telling me I was wrong, when I was never wrong (in the past) about those types of things. Something was seriously off key. I had been an excellent speller and couldn't remember words I should know. I tried explaining to my doc, but he didn't get it. I had kept working (ludicrously, for my work) through some of this. Sometime after he pulled me off (and I didn't stop immediately-more fool me!), I had worse things happen. I would get lost driving home.. I had more trouble reading, speaking, typing. I learned not to trust my own memory, there were too many people disagreeing with it. I wondered if I was nuts about everything. At any rate, I decided I couldn't manufacture pain that severe-it was just unbelievable.
My doc was worried and believed I was sick and that it was not psychologic. Almost all the other docs I went to threw up their hands and said psychologic when they couldn't figure it out. Then I got depressed! I started really doubing myself because all these docs said so. I asked for a referral to a shrink to start fixing the psychologic part. My doc sent me to someone expereinced with both chronic pain and malingerers. After two sessions she told me to give myself more credit and remember that docs resorted to a psychologic diagnosis when they were inadequate to the challenge. That was enough to cure the depression by restoring my confidence in myself. One of the most horrible things that docs do to us is teach us to doubt ourselves. That undermining is unforgivable, and certainly against the first principle of medicine, primum non nocere.
But still I got worse and worse. I couldn't sit up for more than a couple of hours without being totally exhausted. Getting up and showering and getting dressed was enough to make me want a nap in the morning. I always wanted a nap in the afternoon, usually just as my kid was getting home from school.
In 2000, I finally managed to think past idiot Armstrong, and pried my mind open to reconsider Lyme disease along with everything else. I had two more Lyme disease tests, but I didn't yet know enough to ask for Igenex. They were both negative.
Pain, pain, more pain. In Jan of 2000 or 2001 (?) I went to a pain specialist, (against my PCP's wishes) because he just didn't offer anything more for pain control. I told both of them I didn't want narcotics but I had to have something. The pain doc knew a great deal about ancillary drugs, and started me on a reasonaby effect regimen of Celebrex (raised my blood pressure) Catapress TTS (lowered my blood pressure), high dose topomax, hydroxychloroquine, and indeed a narcotic rescue drug. It did help. Incidentally hydroxychloroquine is active against the cystic form of Lyme disease, and therein is where this next story lies. I herxed:
Three weeks later I got so weak I couldn't climb the stairs and could barely get out of my chair, usually needed help to get out of it. My husband would leave home with me in my recliner, and come home to get me out of it. I had been getting gradually weaker, but slightly. Until 1999 I had continued to play racquetball with male opponents who force a hard aggressive game out of you. Suddenly I was terribly weak and within a month, atrophy of muscles began to appear. My hand muscles, the intrinsics caved in, leaving me with hollows instead of pads of muscles in my hands. This wasn't listed as a side effect of those medicines, and I was afraid to emphasize it. The pain meds were necessary.
After a while the devastating weakness went away, and I could get out chairs and climb the stairs to my bedroom. The atrophy didn't go away. But then in a month, the weakness came back out of nowhere. I didn't know what I did to provoke it. It went away faster that time. I was feeling better. I started feeling so much better I tried a walk with a girlfriend on a beautiful May evening. I felt so good as we started up a little hill near my house we talked about playing racquetball together. (I used to beat her every game.) By the time we came home I was struggling to make it. Next day I needed help to get out of bed. And for the next two weeks I needed help to get in and out of my chair, or with stairs. That was enough to make me very careful about how hard I pushed on exercise.
The summer of 01, I begged for a referral back to the original ID doc who had put me on doxycyline without clear proof of Lyme. My insurance of that time would cover it. A western blot from Igenex was clearly positive by CDC standards for Lyme disease, and I started to learn everything I could about it. This had been the one thing I didn't investigate, thanks to Dr. Deathstrong, so I was starting from scratch. So the first lesson was don't believe any doctor, investigate for yourself. I have never met a doctor that came with higher recommendations than Dr. ARmstrongkiller, but look what he did to me.
The next thing I learned was that there were two schools on Lyme, the major published school, the one most docs know of and see and diagnose and treat, the "Steere group", which is also unfortunately what your doc sees, and a less published one, the "Burrascano" group. I started off reading the Steere stuff, so I was biased in their direction, and when I started pulling my network for strings of contacts, the only colleagues I could get personal contacts with were Steerites. But after I found the Burrascano info, I wondered. And I was back to wondering if Jamie could have Lyme. I got him tested, and his test at Igenex was negative, but the quality of the negative worried me a lot. He was plus minus on highly suspicious bands, and he two symptoms since infancy that have nothing to do with Steere's writing, but were mentioned on the ILADS website as likely symptoms in children. Of course his docs thought testing him was going far enough, and even my ID doc said "I don't do kids!" A two day conference was coming up. I was terrified of traveling alone, I was so tired I used a reclining wheelchair because I was too tired to sit up, but I had to know what to do about Jamie. I went to the conference.
By the end of the conference, my bias was completely different. Every single doctor there who got Lyme disease wanted to be treated the Burrascano way. Very telling. Burrascano's patients got better, Steere's patients didn't. Some did, but lots didn't. People treated by Steere over and over were failures til they fell into the other camp, and it was the best thing that ever happened to them. No wonder all the docs wanted a Burrascano protocol-they wanted to get better. All of Burrascano's did, it just takes a really long time if you have been really sick. And there may be really complex problems to sort out, but that is no excuse for not doing so. I pumped every doc there I catch up with for an opinion about Jamie. I got opinions ranging from treat him now to do a spinal tap. Noone said to ignore him which is what was happening. And I met the Lyme literate doc in my area. (When I came home I got on his waiting list, which I am still on to this day)
I came home, where they wanted to do MRIs and CTs, Ultrasounds, UGIs and LGIs and BEs, but not treat him for Lyme. I followed up on all of those, and they were negative. I talked about an LP and they were willing to do it, so I wrote on the Lyme network where the docs hang out, asking for what tests to do. I got a surprising number of them saying not to do it, and citing references on not doing it, including a Burrascano reference. So I backed out and tried to figure what to do. Finally, someone said, why not take him to Jones while he is still alive. You at least will find out-he will know. I called for an appointment, and they actually had one in early June. We got it, hopped a plane the afternoon school ended, and were met by a cloudie who took us to him. Jones arranged the tests that was so hard to do and cost so much money out here with full insurance coverage there. It meant missing a few days of pain meds. Jamie was worth it. Jan got me to that test to. In the middle of it, she learned he husband had been hit by a car while on his bicycle. She managed to get me to my final dropoff before heading to the hospital. She must have nerves of steel.
During that several months, I had been through one month of IV antibiotics, and several months of oral antibiotics. I have had a broken rib cartilage, dislocated my patella and gotten serious sustained muscle spasms altering my posture from missing two weeks of magnesium when I run out. After being on my oral meds over a month, the pain worsened severely yet again. That is late for a herx, but it clearly seemed to be one. I called to make an appointment with the pain doc when I couldn't take it any more. Even so waiting, I couldn't stand it. Finally I talked it over with my husband, and showed him an article from the net suggesting discontinuing antibiotics for a week if the pain was incredibly severe, with a warning that if you didn't you might never get it in control again. I went off the antibiotics for what I planned on being three days. I didn't have enough nerve to restart after three days, I waited the whole week. It did help tremendously though. Within 24 hours of stopping the antibiotic, the pain started declining, verifying it was a herx.
When I saw the pain doc, I begged for more meds. He said it was time to start duragesic patch (opiod). I didn't want to and he told me there were no other answers. I had had mexilitene in mind, but he refused. So I started the duragesic. Apart from a few hours of drive heaves beginning at a theater performance and no doubt greatly alarming the person sitting next to me, it was a godsend.
I developed a frozen shoulder which was initially missed by my doc because I wasn't assertive enough in complaining, and then became bilateral, and one side went on to develop RSD. Because the RSD was well recognized by the OT and I was able to beg and bully a doc into doing the nerve blocks I needed, that was able to clear completely. I only have partial resolution of the frozen shoulder because I need surgery to work further on the severe side, and I won't let them touch it and provide a further nidus for Lyme.
But by the time of Jamies trip I had been on antibiotics for nine months, I thought I was getting better. My ankle didn't hurt so bad I had to keep it flexed just right, and my husband thought I was remembering things better. So did I. That was more than my ID doc had told me to hope for, but I duly reported it.
As an aside, a friend who is a doc came to see me about then. She saw me one of the times my bladder was really bothering me. She wanted to take me to the ER, thinking I had a kidney infection. I refused and she did take me to my doc at the time his office opened in the morning. I had had periods of real misery and bladder irritability before. All lab work normal.
Three weeks after getting Jamie back home we got a call from Dr. Jones saying that he tested positive for Bartonella hensalae. I told him we have cats, but he felt that the physical exam suggested that he had the type acquired tick born, not from cats. So he changed Jamie's meds. When Jamie's meds got changed, they got changed to my current antibiotic, the one I had been on for seven months. Apparently the pharmacy gave me only a week and told me to come and get the rest when they got it in stock. My memory doesn't hold many new bits, and those are random. I thought I had lost Jamie's meds zithromax. After some hesitation, I decided to take his Biaxin, and give him my zithromax. I had been on it long enough to kill bartonella and we weighed just about the same. our doses were identical. Three weeks later we were both on zithromax.
Unfortunately by five weeks later it was clear I was getting worse. My hips and ankles hurt worse, it was more painful to walk. My right wrist and even my left wrist hurt. My fingers on left hand hurt. The burning was geting worse. I wasn't sure about my memory, or my fatigue. I made another appointment for the ID doc. After some thought (and perhaps sceptism) he added Ceftin. That was actually the second drug Jamie was taking, so now we were on identical regimens.
Shortly after starting Ceftin, I developed overwhelming chills and sweats, leaving me much tireder than I had been. I also developed radiulitis, and then more radiculitis. The chills and sweats might be another herx, but the radiulitis didn't seem like that to me. I was scared I was getting much worse, instead of herxing. I was still not up to the top on the Lyme litereate docs list. I heard a rumor that there was a lyme literate doc, so so near me, and went to see him, and then I asked my hubby to drive me six hours away to where there was a lyme literate doc I could get in with. We had to leave the day before. Both of them thought it was a herx, so I settled down to wait it out. The radiculites went away. The chills and sweats lasted months, and then went away.
Jamie I was able to get off half his psych meds, after he had been on antibiotics, but that was all. I started searching for more info, and joined an integrative psych group that I heard about from the Lyme group. There I learned a heck of a lot about mental illnesses that respond primarily to increased nutritional supplies to the brain. It blew me away. Eventually I had the courage to ask the most knowledgeable person in the group about bipolar and lyme disease. He commented he had only seen three (and his institute has a data base of 17,000 clients) but all three had had the same chemical defect-pyrrolurea. I immediately asked Jamie's psychiatrist to test him for pyrrolurea. She responded just as she had when I asked her to test him for Lyme disease-I don't know about it so I went. I was furious. But I started treating him for pyrrolurea, (zinc, vitamin B6, and evening primrose oil, limit the copper, broad based Vit E fish oil, multi vit multi mineral (except copper) support) and he got better. Enough better we got him off all psych meds. He isn't fixed, he isn't well, but he is better. Jones says he has a good prognosis.
I have met two other mom's with kids with congenital or early onset Lyme in California. Both of them fly their kids to Jones.
Now I'm having worsening bladder problems again. It's bad enough I've had to take ditropan, which has me off my duragesic, as I go into urinary retention with more than one drug that is sort of anticholinergic. Pain or allergy meds? (Pain) (Bladder or Pain?-bladder this time)
I've recommended to four personal friends they get tested for Lyme. My best friend for many years, who moved away, and her daughter. A bridge partener of mine. An old boyfriend of mine. All four were positive. The only two had any of the same symptoms were mother and daughter, they both had depression. The bridge partner had bad back pain from a disc and a stubbed toe that hadn't healed in two years and was losing words now and then. The boyfriend had severe hyperaccusis. Someone approached me at the bridge center the other day. I told him how to get seen immediately by the doctor I'm waiting for. He was just bitten and had the rash, which is diagnostic. If he is taken care of now, he won't get the chronic illness. I'm willing to wait for that.
The group of Lyme doctors had people saying they got to be Lyme docs because they were CFS and FM docs, and when they learned how to look for it right, ALMOST ALL their patients had Lyme disease. Bill Harvey's article in Medical Hypothesis, extensively referenced, and written from a broad medical practice, said when he started looking and relooking regularly, ALMOST ALL his multisymptom (read fatigue, pain, foggy, dizzy, numb, irritable bladder, and go read the rest of symptoms that might apply-he is not saying all the symptoms, just more than one) had Lyme in a non endemic area. That just blows me away. No wonder I tested negative three times first, that may be normal. I am seriously worried that a huge percent of the fibromyalgics have Lyme disease.
Find out, and don't take one test for no. Don't take any lab but Igenex. The lyme docs were writing today why it is a much better lab. Get tested and retested, or find your way to a Lyme literate doc. If you had Lyme before and you hurt now, get treated. This germ lives for 20 years inside cells.
What has happened that was best for me: Getting on the hydroxychloroquine early-kicking the cysts out and not letting it move into cysts. all by coincidence, since it was started for pain.
What happened that was bad for me: Three weeks of biaxin instead of zithromax-it has worse cell penetration, and I clearly started getting worse during that time, and haven't necessarily gotten it back.
Note Lyme doses are generally double the doses for other antibiotics. Zithromax 250 twice a day, doxycyline 200 mg twice a day, ceftin 500 mg twice a day.
A herxheimer (herx) reaction is when you get dead bacterial products piling up faster than your system can clear the products. It makes you feel worse, in some way that you already felt bad. But it is a sign you are makin progress. So mine were overwhelming weakness (hydroxychloroquine), overwhelming pain (zithromax), and chills and fever wiht overwhelming fatigue (cefin). I did not herx significantly on either doxycycline or IV rocephin.
One of my docs thinks the bladder episodes are mini herxes with dead lyme piling up in the bladder wall. That would explain why I feel sick with them as well as have tremendous bladder irritability.
I woke up unable to turn my neck with painful muscle spasms early in the morning Jan 1 1985. I don't remember what I had done for New Years evening that year, but I do remember I had wanted to go in to work for many hours that day, and I went but had to turn my whole body to look at anything, because I couldn't turn my head/neck. I was treated with muscle relaxants and motrin and this gradually went away over several weeks. It recurred some time later, and then again.
It was my onset of myofascial pain syndrome. Not necessarily of Lyme disease. I had night sweats for a very long time, and can't remember when they started. I had been hiking of camping sometime in the past, because I was always hiking sometime in the past. Probably not the immediate past-December is pretty cold even in California. I had only been back in California for 6 mo, then two months in Maryland, a year in Ohio, a month in Canada, a year in Ohio, a month in Europe. Lots of camping and hiking in the eastern forests when I had a chance.
At that time-85- I had a very stressful job and marriage, and had intermittent slowly worsening MFP and had migraines for a long time. This didn't seem like much in that context. I didn't pay much attention to it, didn't see my doc often but mentioned it when I was in. I got some injections and stretch and spray, went to some PT, I saw a chiropracter, but never asked for pain meds other than motrin. I was tough and knew I could handle anything. This was not going to be a big deal in my life.
When things smoothed out a lot, I got the perfect job I wanted, a pregnancy I wanted with the man I wanted, I started getting worse. But I was practically geriatric for pregnancy, and noone respects complaining women, so I didn't. I had the baby at 39 and never recovered, instead developed full blown fibromyalgia and chronic fatigue, not called syndrome because it was ascribed to pregnancy and childbirth with complications, then to having a newborn.
I only got worse as the time went on. The pain stopped going away, but was constantly present, and spread to more muscle groups. I developed burning eyes and blurring vision when tired that was not apparent on eye tests. The fatigue was like a wall in front of me. I stopped working two jobs. I stopped working 12 mo. a year. I stopped 40 hr a week, and I still couldn't quite manage.
I went home from work to sleep before picking up the baby from day care. I lived on motrin, til I got an ulcer from it. I did more PT, I saw another chiropracter. I also had trouble with my marriage, and got very irritable. I think some of it was definitely the spouse's fault, but I suspect some significatn amount of it was the hyperirritability that can come with Lyme disease. My memory is not good enough to recall well enough to analyze.
When I found a paper describing fibromyalgia after Lyme disease, I thougth that was it-I had alreayd had numbness and burning. A western blot showed a single band-not at all diagnostic, but I found an ID doc willing to let me take doxycycline even though I only had one band positive-"a negative test". I started getting better-I lost the numbness and burning, though not the muscle pain.
Then my insurance changed to managed care and I had to see a new PCP. I chose a decent one, someone I had known a long time. And it occured to me to ask if the baby could have been infected in utero. The PCP didn't know, understandably. He insisted on my going to The Doctor of Doom, Armstrong. He "GUARANTEED" I did not have Lyme and would not even answer the question about if I did, could baby Jamie.
All downhill from there. I managed to barely keep working three more years. The pain escalated and escalated. I was unable to stand for long, then unable to sit for long. Going out with my family for anything long was out, it ruined our life. I got a wheelchair so I could do things with my child. It helped at first. But I got tired, to where even sitting was exhausting. Eventually I got a reclining wheelchair, so I could go out of the house for more than an hour or two with my family.
Meantime I was getting neurologic symptoms. First I became aware that I was getting wrong answers in my math puzzle puzzle books. I had done these since around age 14, and I should have been able to do all of them without mistakes, except maybe the hardest one or two at the end of the book. Instead I was having pages in a row where the mistakes were so dense I couldn't clear them up and would just leave them labeled mistake and go on. When I got done with a book and looked back and found areas where 3 out of 4 pages were labeled like that, I knew something was terribly wrong with my brain. It wasn't just that I was arguing more and people were telling me I was wrong, when I was never wrong (in the past) about those types of things. Something was seriously off key. I had been an excellent speller and couldn't remember words I should know. I tried explaining to my doc, but he didn't get it. I had kept working (ludicrously, for my work) through some of this. Sometime after he pulled me off (and I didn't stop immediately-more fool me!), I had worse things happen. I would get lost driving home.. I had more trouble reading, speaking, typing. I learned not to trust my own memory, there were too many people disagreeing with it. I wondered if I was nuts about everything. At any rate, I decided I couldn't manufacture pain that severe-it was just unbelievable.
My doc was worried and believed I was sick and that it was not psychologic. Almost all the other docs I went to threw up their hands and said psychologic when they couldn't figure it out. Then I got depressed! I started really doubing myself because all these docs said so. I asked for a referral to a shrink to start fixing the psychologic part. My doc sent me to someone expereinced with both chronic pain and malingerers. After two sessions she told me to give myself more credit and remember that docs resorted to a psychologic diagnosis when they were inadequate to the challenge. That was enough to cure the depression by restoring my confidence in myself. One of the most horrible things that docs do to us is teach us to doubt ourselves. That undermining is unforgivable, and certainly against the first principle of medicine, primum non nocere.
But still I got worse and worse. I couldn't sit up for more than a couple of hours without being totally exhausted. Getting up and showering and getting dressed was enough to make me want a nap in the morning. I always wanted a nap in the afternoon, usually just as my kid was getting home from school.
In 2000, I finally managed to think past idiot Armstrong, and pried my mind open to reconsider Lyme disease along with everything else. I had two more Lyme disease tests, but I didn't yet know enough to ask for Igenex. They were both negative.
Pain, pain, more pain. In Jan of 2000 or 2001 (?) I went to a pain specialist, (against my PCP's wishes) because he just didn't offer anything more for pain control. I told both of them I didn't want narcotics but I had to have something. The pain doc knew a great deal about ancillary drugs, and started me on a reasonaby effect regimen of Celebrex (raised my blood pressure) Catapress TTS (lowered my blood pressure), high dose topomax, hydroxychloroquine, and indeed a narcotic rescue drug. It did help. Incidentally hydroxychloroquine is active against the cystic form of Lyme disease, and therein is where this next story lies. I herxed:
Three weeks later I got so weak I couldn't climb the stairs and could barely get out of my chair, usually needed help to get out of it. My husband would leave home with me in my recliner, and come home to get me out of it. I had been getting gradually weaker, but slightly. Until 1999 I had continued to play racquetball with male opponents who force a hard aggressive game out of you. Suddenly I was terribly weak and within a month, atrophy of muscles began to appear. My hand muscles, the intrinsics caved in, leaving me with hollows instead of pads of muscles in my hands. This wasn't listed as a side effect of those medicines, and I was afraid to emphasize it. The pain meds were necessary.
After a while the devastating weakness went away, and I could get out chairs and climb the stairs to my bedroom. The atrophy didn't go away. But then in a month, the weakness came back out of nowhere. I didn't know what I did to provoke it. It went away faster that time. I was feeling better. I started feeling so much better I tried a walk with a girlfriend on a beautiful May evening. I felt so good as we started up a little hill near my house we talked about playing racquetball together. (I used to beat her every game.) By the time we came home I was struggling to make it. Next day I needed help to get out of bed. And for the next two weeks I needed help to get in and out of my chair, or with stairs. That was enough to make me very careful about how hard I pushed on exercise.
The summer of 01, I begged for a referral back to the original ID doc who had put me on doxycyline without clear proof of Lyme. My insurance of that time would cover it. A western blot from Igenex was clearly positive by CDC standards for Lyme disease, and I started to learn everything I could about it. This had been the one thing I didn't investigate, thanks to Dr. Deathstrong, so I was starting from scratch. So the first lesson was don't believe any doctor, investigate for yourself. I have never met a doctor that came with higher recommendations than Dr. ARmstrongkiller, but look what he did to me.
The next thing I learned was that there were two schools on Lyme, the major published school, the one most docs know of and see and diagnose and treat, the "Steere group", which is also unfortunately what your doc sees, and a less published one, the "Burrascano" group. I started off reading the Steere stuff, so I was biased in their direction, and when I started pulling my network for strings of contacts, the only colleagues I could get personal contacts with were Steerites. But after I found the Burrascano info, I wondered. And I was back to wondering if Jamie could have Lyme. I got him tested, and his test at Igenex was negative, but the quality of the negative worried me a lot. He was plus minus on highly suspicious bands, and he two symptoms since infancy that have nothing to do with Steere's writing, but were mentioned on the ILADS website as likely symptoms in children. Of course his docs thought testing him was going far enough, and even my ID doc said "I don't do kids!" A two day conference was coming up. I was terrified of traveling alone, I was so tired I used a reclining wheelchair because I was too tired to sit up, but I had to know what to do about Jamie. I went to the conference.
By the end of the conference, my bias was completely different. Every single doctor there who got Lyme disease wanted to be treated the Burrascano way. Very telling. Burrascano's patients got better, Steere's patients didn't. Some did, but lots didn't. People treated by Steere over and over were failures til they fell into the other camp, and it was the best thing that ever happened to them. No wonder all the docs wanted a Burrascano protocol-they wanted to get better. All of Burrascano's did, it just takes a really long time if you have been really sick. And there may be really complex problems to sort out, but that is no excuse for not doing so. I pumped every doc there I catch up with for an opinion about Jamie. I got opinions ranging from treat him now to do a spinal tap. Noone said to ignore him which is what was happening. And I met the Lyme literate doc in my area. (When I came home I got on his waiting list, which I am still on to this day)
I came home, where they wanted to do MRIs and CTs, Ultrasounds, UGIs and LGIs and BEs, but not treat him for Lyme. I followed up on all of those, and they were negative. I talked about an LP and they were willing to do it, so I wrote on the Lyme network where the docs hang out, asking for what tests to do. I got a surprising number of them saying not to do it, and citing references on not doing it, including a Burrascano reference. So I backed out and tried to figure what to do. Finally, someone said, why not take him to Jones while he is still alive. You at least will find out-he will know. I called for an appointment, and they actually had one in early June. We got it, hopped a plane the afternoon school ended, and were met by a cloudie who took us to him. Jones arranged the tests that was so hard to do and cost so much money out here with full insurance coverage there. It meant missing a few days of pain meds. Jamie was worth it. Jan got me to that test to. In the middle of it, she learned he husband had been hit by a car while on his bicycle. She managed to get me to my final dropoff before heading to the hospital. She must have nerves of steel.
During that several months, I had been through one month of IV antibiotics, and several months of oral antibiotics. I have had a broken rib cartilage, dislocated my patella and gotten serious sustained muscle spasms altering my posture from missing two weeks of magnesium when I run out. After being on my oral meds over a month, the pain worsened severely yet again. That is late for a herx, but it clearly seemed to be one. I called to make an appointment with the pain doc when I couldn't take it any more. Even so waiting, I couldn't stand it. Finally I talked it over with my husband, and showed him an article from the net suggesting discontinuing antibiotics for a week if the pain was incredibly severe, with a warning that if you didn't you might never get it in control again. I went off the antibiotics for what I planned on being three days. I didn't have enough nerve to restart after three days, I waited the whole week. It did help tremendously though. Within 24 hours of stopping the antibiotic, the pain started declining, verifying it was a herx.
When I saw the pain doc, I begged for more meds. He said it was time to start duragesic patch (opiod). I didn't want to and he told me there were no other answers. I had had mexilitene in mind, but he refused. So I started the duragesic. Apart from a few hours of drive heaves beginning at a theater performance and no doubt greatly alarming the person sitting next to me, it was a godsend.
I developed a frozen shoulder which was initially missed by my doc because I wasn't assertive enough in complaining, and then became bilateral, and one side went on to develop RSD. Because the RSD was well recognized by the OT and I was able to beg and bully a doc into doing the nerve blocks I needed, that was able to clear completely. I only have partial resolution of the frozen shoulder because I need surgery to work further on the severe side, and I won't let them touch it and provide a further nidus for Lyme.
But by the time of Jamies trip I had been on antibiotics for nine months, I thought I was getting better. My ankle didn't hurt so bad I had to keep it flexed just right, and my husband thought I was remembering things better. So did I. That was more than my ID doc had told me to hope for, but I duly reported it.
As an aside, a friend who is a doc came to see me about then. She saw me one of the times my bladder was really bothering me. She wanted to take me to the ER, thinking I had a kidney infection. I refused and she did take me to my doc at the time his office opened in the morning. I had had periods of real misery and bladder irritability before. All lab work normal.
Three weeks after getting Jamie back home we got a call from Dr. Jones saying that he tested positive for Bartonella hensalae. I told him we have cats, but he felt that the physical exam suggested that he had the type acquired tick born, not from cats. So he changed Jamie's meds. When Jamie's meds got changed, they got changed to my current antibiotic, the one I had been on for seven months. Apparently the pharmacy gave me only a week and told me to come and get the rest when they got it in stock. My memory doesn't hold many new bits, and those are random. I thought I had lost Jamie's meds zithromax. After some hesitation, I decided to take his Biaxin, and give him my zithromax. I had been on it long enough to kill bartonella and we weighed just about the same. our doses were identical. Three weeks later we were both on zithromax.
Unfortunately by five weeks later it was clear I was getting worse. My hips and ankles hurt worse, it was more painful to walk. My right wrist and even my left wrist hurt. My fingers on left hand hurt. The burning was geting worse. I wasn't sure about my memory, or my fatigue. I made another appointment for the ID doc. After some thought (and perhaps sceptism) he added Ceftin. That was actually the second drug Jamie was taking, so now we were on identical regimens.
Shortly after starting Ceftin, I developed overwhelming chills and sweats, leaving me much tireder than I had been. I also developed radiulitis, and then more radiculitis. The chills and sweats might be another herx, but the radiulitis didn't seem like that to me. I was scared I was getting much worse, instead of herxing. I was still not up to the top on the Lyme litereate docs list. I heard a rumor that there was a lyme literate doc, so so near me, and went to see him, and then I asked my hubby to drive me six hours away to where there was a lyme literate doc I could get in with. We had to leave the day before. Both of them thought it was a herx, so I settled down to wait it out. The radiculites went away. The chills and sweats lasted months, and then went away.
Jamie I was able to get off half his psych meds, after he had been on antibiotics, but that was all. I started searching for more info, and joined an integrative psych group that I heard about from the Lyme group. There I learned a heck of a lot about mental illnesses that respond primarily to increased nutritional supplies to the brain. It blew me away. Eventually I had the courage to ask the most knowledgeable person in the group about bipolar and lyme disease. He commented he had only seen three (and his institute has a data base of 17,000 clients) but all three had had the same chemical defect-pyrrolurea. I immediately asked Jamie's psychiatrist to test him for pyrrolurea. She responded just as she had when I asked her to test him for Lyme disease-I don't know about it so I went. I was furious. But I started treating him for pyrrolurea, (zinc, vitamin B6, and evening primrose oil, limit the copper, broad based Vit E fish oil, multi vit multi mineral (except copper) support) and he got better. Enough better we got him off all psych meds. He isn't fixed, he isn't well, but he is better. Jones says he has a good prognosis.
I have met two other mom's with kids with congenital or early onset Lyme in California. Both of them fly their kids to Jones.
Now I'm having worsening bladder problems again. It's bad enough I've had to take ditropan, which has me off my duragesic, as I go into urinary retention with more than one drug that is sort of anticholinergic. Pain or allergy meds? (Pain) (Bladder or Pain?-bladder this time)
I've recommended to four personal friends they get tested for Lyme. My best friend for many years, who moved away, and her daughter. A bridge partener of mine. An old boyfriend of mine. All four were positive. The only two had any of the same symptoms were mother and daughter, they both had depression. The bridge partner had bad back pain from a disc and a stubbed toe that hadn't healed in two years and was losing words now and then. The boyfriend had severe hyperaccusis. Someone approached me at the bridge center the other day. I told him how to get seen immediately by the doctor I'm waiting for. He was just bitten and had the rash, which is diagnostic. If he is taken care of now, he won't get the chronic illness. I'm willing to wait for that.
The group of Lyme doctors had people saying they got to be Lyme docs because they were CFS and FM docs, and when they learned how to look for it right, ALMOST ALL their patients had Lyme disease. Bill Harvey's article in Medical Hypothesis, extensively referenced, and written from a broad medical practice, said when he started looking and relooking regularly, ALMOST ALL his multisymptom (read fatigue, pain, foggy, dizzy, numb, irritable bladder, and go read the rest of symptoms that might apply-he is not saying all the symptoms, just more than one) had Lyme in a non endemic area. That just blows me away. No wonder I tested negative three times first, that may be normal. I am seriously worried that a huge percent of the fibromyalgics have Lyme disease.
Find out, and don't take one test for no. Don't take any lab but Igenex. The lyme docs were writing today why it is a much better lab. Get tested and retested, or find your way to a Lyme literate doc. If you had Lyme before and you hurt now, get treated. This germ lives for 20 years inside cells.
What has happened that was best for me: Getting on the hydroxychloroquine early-kicking the cysts out and not letting it move into cysts. all by coincidence, since it was started for pain.
What happened that was bad for me: Three weeks of biaxin instead of zithromax-it has worse cell penetration, and I clearly started getting worse during that time, and haven't necessarily gotten it back.
Note Lyme doses are generally double the doses for other antibiotics. Zithromax 250 twice a day, doxycyline 200 mg twice a day, ceftin 500 mg twice a day.
A herxheimer (herx) reaction is when you get dead bacterial products piling up faster than your system can clear the products. It makes you feel worse, in some way that you already felt bad. But it is a sign you are makin progress. So mine were overwhelming weakness (hydroxychloroquine), overwhelming pain (zithromax), and chills and fever wiht overwhelming fatigue (cefin). I did not herx significantly on either doxycycline or IV rocephin.
One of my docs thinks the bladder episodes are mini herxes with dead lyme piling up in the bladder wall. That would explain why I feel sick with them as well as have tremendous bladder irritability.
Danielle
Mosken
USA
