(Editor: Karls rather rapid response to the CAP is not necessarily typical of MS patient response. Every patient's response is different. Karl was able to hit the Cpn infection hard and persistently and manage the die-off symptoms adequately in this process. Others must take it much more slowly. His story is inspiring for the persistance it took for him to get adequate treatment, and his thoughtful description of his experience.)
We've been with the CPN Help site since I became ill, and we've gained insightful, profound knowledge and learned how much we have in common with many of you. Thank You. I haven't blogged til now as I never really felt up to the simple task. Also, as the treatment progressed, I wanted to know more perspective on how I was doing. There was/is still so much unknown. Here is my story. I hope it will help anyone who is in need of support or direction with respect to the antibiotic treatment.
I want everyone to know how much the CAP has helped me. General Story: I have always been a good picture of health. Never in a hospital, never flu-like, no broken bones, vision 20/20 and fantastic overall. I rarely missed a day of school or work. At most, I would have one cold each year, fair amount of headaches as I deal with stress internally and just slowly becoming chronically fatigued. My Aunt (Father's side) and my Father's cousin in MN/WI both have MSi diagnosed back approximately in the 60's. My Aunt has had a few exacerbations over the years but my Father's cousin has been in a nursing home since his mid-late 30's. We didn't really know anything about MS until after my diagnosis. Six years ago, I moved into a great career of sales in the dental industry. I worked like a dog and bought my first real home. We knew nothing about MS and CPN. I was happy, healthy and took most of life for granted, I guess. At that time, six years ago, I had a tick bite marked only by the bulls-eye, no other rash or symptoms. Lyme test, Elisa only, was negative. One month of antibioticsi was given just in case and I moved on. No other testing was done. Since then, I've married my dear Alyson in April, 2005. In October of 2005, we attended her brother's wedding in Jamaica. Many of the guests became ill after the wedding returning home. My wife had a walking pneumonia for nearly two weeks. I had some respiratory symptoms, but I wasn't as sick as my wife (or so I thought). My wife got better and we forgot about it. We moved into a new, larger home in December, 2005. Daughter, Evelyn Ann, was born February, 2006. All through this time, I was fine/"healthy"-except for the headaches, and growing fatigue that I attributed to a sales territory originally spanning all of New England, Maine to Virginia and west including Michigan, and to work stress. Who wouldn't be tired consistently driving an average of 4,000 miles/month and flying as much as birds?
Mid April of 2006, the fatigue was epidemic and for 3 days my right foot was always "asleep" and numb. Two days later my left foot became numb with the right. I was sleeping extra and stumbling through work appointments. I had to pull over on the road and power nap so I would make it home alive. Numbness ascended my legs and then my entire body within days. My head was in a fog, cognitively, and felt swollen. I started having trouble swallowing, speaking and dexterity in my right hand lessened. I lost abdominal reflex on the right side. I became so weak. I knew this was serious. I wasn't well. Due to extreme work stress at the end of that day, I experienced severe changes in mood. I was enraged, spitting and ready to break anything I could get my hands on. I literally and seriously noted increased saliva with my anger. No joke. That night, April 28, 2006, becoming more alarmed/scared, we went to the local hospital. DOC-1, 1st ER doctor says, "Oh, numbness like that in your legs happened to me when I started running. It'll go away. This isn't anything like MS or such, don't worry." Blood tests negative for Elisa and Westblot Lyme. "I don't run," I told him. "Let's just watch it," he said.
Symptoms worsened. (more fatigue, trouble swallowing, weakness, numbness) No further testing was done. The next morning, I took a hot shower and realized I was extremely weak and shaky all over the body and more numb throughout immediately after. I couldn't feel the towel against my skin anywhere as I dried off. We went to a more prominent hospital ER that morning. DOC-2, 2nd ER doctor-she did a bit further work-up and blood tests, but end result was the same as the first- "Let's watch it" -although not attributed to running, but rather to depression. Was this all in my mind causing this-work stress? I was wondering what this was- maybe menengitis, mad cow disease, anthrax or even ricin poisoning?? I started to research these realizing I was not suffering from them. A few days later, I went to see DOC 3 -a Psychiatrist (also an M.D.) whom also thought this was all in my mind. He felt depression, anxiety, work stress and negative thoughts regarding company management were causing this. He even tried to reason that I was depressed after the birth of our daughter in February and that I felt left out of the relationship between my wife and daughter. No such thing. I was highly involved with my wife and my baby and laughed when he told me I wasn't. He prescribed Zoloft and Xanax. I tried them since we didn't know what we were dealing with. I took only one pill. It actually made me more depressed with what was going on and more mentally dull. The Psychiatrist said, "this isn't MS or such, let's work on anger management, self esteem, and dealing with work stress and management negotiation."
My symptoms were growing and we still had no idea what the problem was. In late April, my wife set up an appointment with another GP as we were not happy with my current GP. DOC-4, GP in CT didn't have a clue. "This isn't MS or such. Let's watch it. I don't know what this is." Overall, at this time, I was still functional, able to drive, good coordination and reflexes -just numb and hugely exhausted with brain fog and growing issues with swallowing, speaking and lessening dexterity. DOC-4, GP, continued me on antidepressants. That messed me up further, again, making me more depressed at times and mentally out of it. No further testing was done. A few days later, I went to see my Primary GP- DOC 5. since she knew my history and had treated the tick bite before. Again, we still had no idea what this was, but Lyme was in the back of our minds as Lyme is very prevalent in New England. "I don't know what this is," she said. Now, I was really having trouble writing and using utensils with my right hand. She tested my finger strength on both hands and found weakness in my right ring finger and said I should see a neurologist for the weakness in my ring finger. Again, I was still quite functional, otherwise.
In hindsight, it is amazing that EACH doctor simply stated, "this isn't MS or such," yet no further testing was ever discussed or done. On May 4, 2006, I went to see DOC 6-Neuroi 1. He tested me out-amazed at my functionality but noticed loss of abdominal reflex on the right. He ordered and MRI right away within the hour. MRI showed 18+ lesions on the brain and spinal cord, all of which showed new enhancement with GAD. (injected dye) There was no evidence of any old lesions. Doc told me, "You have MS. You're lucky....these are not tumors. I'll hand you off to our MS specialist here in the clinic." DOC 7-Neuro 2. (Same office) "You have MS, we'll start you on Solumedrol (steroids) with 3-1,000 grams each to start getting the symptoms abated. We'll see how you do. You also have your choice of 3 standard MS medications that are injectable Interferons to keep the MS in check and it's something you'll learn to live with. You're not dying," he said. "Is there anything I could/should do concerning diet or physical therapy?" I asked. "No, do as you normally do. You just may want to increase vitamin D." That was all he ever recommended even in other following appointments.
On May 5, 2006, I started the steroids. Over the next few days, my health declined further. I was bed ridden, and sleeping most all day, which reminded my wife of her Grandfather after he had a stroke. She and I both wondered whether I was dying. After 3 steroid IV's, I was much worse. I began having double vision, and the fatigue became even more extreme. Further, the swallowing was more difficult and the brain fog became heavier. I was even speaking slower and the numbness was worse. I lost taste and appetite and didn't want to be around anyone. On May 16th, we went back to see Neuro 2. He prescribed 2 more doses of the steroids and also prescribed Elavil. It didn't work-seemed to also worsen symptoms and gave me insomnia. I was having major insomnia, then, for which they recommended Melatonini. We read the label which states not to be used by those with auto-immunei diseasesi. We questioned the Neuro., and he said it was ok to use. I tried it. The Melatonin made all symptoms worse. I only used one. After finishing the steroids #4 and 5, symptoms again gradually worsened. On May 19, 2006, 2 days after the 5th steroid, I started the Betaseron Interferon. Symptoms continually worsened. I experienced some night sweats and headaches along with injection point irritation/bruising.
On May 25, 2006, we returned to Neuro #2 even though we didn't have an appointment. We were so desperate that we sat in the office and refused to leave until we saw the Neuro. Neuro agreed to see us, and I then asked him about the elevated saliva level. He said there was no connection to MS. I asked him about the trouble breathing and was told it was not connected to MS, either. I asked the Neuro whether this could possibly be Lyme disease and he said no. My wife pressed him and asked him if he could guarantee I didn't have Lyme. Of course, he was unable to guarantee me that since he didn't do any further testing, so he agreed to put me on Minocyclinei, ostensibly because "it's good for MS as an anti-inflammatory only." At this point in time, I judged myself to be 8.0-8.5 on the EDDS scale. I was never classified by any Neuro - other than to say this is MS.
Shortly after the appointment on May 25th, my wife learned about CPN/Wheldon/Stratton antibiotic CAP treatment through her extensive research. She was not going to accept MS for me, herself or our 3 month old baby. She remembered the illness she had suffered from in October after the Jamaica wedding and wondered whether it was CPN. She decided we would try the antibiotics as my health was declining every day and the standard MS treatments were clearly not helping and only causing irritation and bruising. We asked Neuro 2 to do the prescribing, which he agreed to do if we saw Dr. Stratton personally and if I agreed to stay on one of the standard MS medications. He said he was interested in the treatment, but we knew he would never validate it. He wouldn't prescribe anything other than the Minocycline until I saw Dr. Stratton. He ultimately said to me, "Well, good luck with it. It is at your own risk." We were ready to do anything we needed to in order to get healthy. We considered flying to the UK and meet with Dr. Wheldon. We even concidered stem cell therapy in Holland for $20,000.00 but felt the need for much more resarch and also that this would simply be a last resort. We began making arrangements to see Dr. Stratton, and at the sametime posted on cpnhelp.org asking for referrals to a local doctor who would be willing to prescribe the CAP. We were given the names of two local Lyme docs, one who is a neurologist and one who is an internist. We called for appointments, but were unable to see the Lyme Neuro until June and the internist until September. On May 22, 2006, we went to see another neurologist for a second opinion. DOC 8, Neuro 3.
At this time, my symptoms were worse- more fatigue, more trouble swallowing, swollen head, trouble walking/vision/balance. The balance problem was severe and prevented me from being able to walk properly without aid. I was experiencing Diplopia (double vision) and Nystagmus (eyes shake left and right). DOC #8 was amazed at my functionality, coordination and strength considering the number of lesions. He tested me for Devics Disease, but the test was later negative. He confirmed the diagnosis of MS and recommended 5 more IV steroids. I continued to get worse. At the end, I had a total of 10K grams of steroid infused. I was ruined. Double vision was worse, and I was more exhausted. Numbness was still very heavy throughout body. Steroids should have made me hyper, I thought, but instead I was growing more and more fatigued. The steroid withdrawl was mentally shattering. I wanted to break things as well as myself and be done. I didn't want to see or talk with anyone-even family. Consulted again with Neuro #3, and he also recommended plasma exchange. We agreed, but found that insurance would not cover it. The Neuro was to appeal it and never did. Neuro #3's next recommendation was chemotherapy. We refused and asked him to prescribe the CAP providing research articles, etc.. He refused to prescribe the CAP and we fired him.
On June 1, 2006, I started the CAP vitamin supplementsii and Alyson began to order antibiotics online in case we needed to start on our own. I couldn't wait for relief any longer. After starting the NACi (600 mg-then 1200 mg/day) alone, I began having major herxheimer reactions. I was lying in bed and felt as if my entire body was swollen. I felt like I was 400 pounds instead of my standard 165 pounds. I felt so large I couldn't move, and I felt as if I was actually floating. Also, my mind was racing with numerous old memories and dreams when I was sleeping like my life flashing before me. Surprisingly, I actually thought it was fun and was laughing at times. This type of reaction validated the treatment. The reactions then went away and I titrated up to the high dosage, 2400 mg/day and my body took it in stride, although I began to have major amounts of fluid draining mostly from my left ear, with some pain and tingling sensation working its way down my neck to the shoulder. There was also minor drainage from the right ear, but I did not experience the tingling or pain on that side.
After approximately 2 weeks on the Minocycline and the supplements the fatigue felt slightly better and the numbness was beginning to abate slowly. On June 16, 2006, I went to see the Lyme Neuro. DOC 9-Neuro 4. He confirmed the MS diagnosis. We asked him to test my blood for Lyme and CPN and any other infectious diseases. He did the CPN test somewhat reluctantly. "Everyone has CPN," he said. The results of the tests were as follows: CPN/Chlamydia Pneumoniae- IgGi=1:64H, IgAi=1:16H (Positive old respiratory infection. Positive new respiratory infection.) Lyme - Serologyii = Non-Reactive Elisa- 0.10 C6 Peptide = Negative Elisa- 0.59 IgG and IgMi = Negative Westblot- IgM= Indeterminate/41 and other "CDC"non-specific bands (93) IgG= Indeterminate/41 93 and other "CDC" non-specific bands (43) Babesiosis- 16H Titer Real Time PCRi= Negative (Positive old infection. Only from tick bite-malaria like.) Neuro.4, was amazed at my functionality/coordination considering the amount of damage to the brain and spine. He agreed to prescribe the CAP, but insisted I remain on the standard MS medications; however, he also insisted I get a lumbar puncture to determine whether I actually had Lyme disease or what was going on. At this time, I was already on Minocycline (200 mg/day) and Betaseron (1 ml/every other day). He instructed me to stop the Minocycline for 2 weeks so any infection in the CSF would not be masked by the prescence of the antibiotics.
I was off the Minocycline for 1.5 days and the original symptoms returned with a vengeance. I became more fatigued as in the beginning and the numbness was much worse than it had ever been. We called the Neuro and told him I'm going back on the Minocycline and to forget the lumbar puncture. I went back on the Minoi and the next day noticed the fatigue was slightly better. I also noticed a resurgence of the herxheimer reaction as I had constant itching, major tingling all over and severe night sweats. Several days later, I had an MRI which revealed growth in the lesion on my spine. I wasn't surprised as the numbness was so much worse. On June 27, 2006, I went back to see Neuro #4. He increased the dose of Minocycline from 200 to 400 mg/day. He also put me on Azithromycini 200 mg/day. The herxheimer reaction continued in the form of intense itching and night sweats. On July 2, 2006, I went back to see Neuro #4 and he also put me on Mepron 750mg- 6 week cycle to treat the Babesiosis. This meant I was currently on Minocycline, Azithromycin and Mepron. the herxheimer reactions worsened. I experienced a thick pain in the back of my swollen head/neck. The ear canal (inner ear) on my left was still draining clear fluid, regularly. At this point, I felt like something was crawling under the skin horizontally away from the Adams Apple on both sides of my neck to the back of my head. Night sweats, intense itching and tingling continued. On July 12, 2006, I stopped taking the Betaseron as I did not feel it was helping and I hated injecting myself. Also, I wanted to ascertain whether the night sweats were herxheimer reaction or a reaction to the Betaseron. I stopped the Betaseron and the night sweats continued, so I figured the sweats truly to be herxheimer.
On July 14, 2006,we met with Dr. Stratton at Vanderbilt University. We initially made this appointment because Neuro #2 told us he would not prescribe the CAP if we did not see Dr. Stratton personally; however, by the time the appointment rolled around we were less concerned with getting Neuro #2 to prescribe as we had already found Neuro #4, whom was willing to prescribe. Nevertheless, we kept the appointment with Dr. Stratton and we're very glad we did. Dr. Stratton answered all our questions about the CAP, but most importantly, he gave us hope that I would get better. He told us he believed I could be cured in time, which no other doctor I had seen had been willing to say.
On July 17, 2006, I went to see DOC 11- Lyme Specialist who is an internist. He checked me out and also was amazed at my functionality/coordination despite 18+ lesions on the brain and spine. In review of Neuro #2 MRI reports, the lesion total is more around 23+ on the brain-3 of which are on the spine. He stated that the suspicious titers in my Lyme tests were low, but he determined I had Lyme disease, particularly because my CD-57 test count for killer immune cells was low (21). He was aware of the research on the connection between CPN and MS, and he stated that he believes that the combination of Lyme and CPN can lead to progressive MS, which was what he feels I have. Due to the number of lesions, he felt I should immediately be put on IV antibiotics (Rocephini- 2g/day, 3 month standard treatment). He also said that my case was so severe that I would probably need to be on antibiotics for life. He prescribed the first month of Rocephin, but told me to follow up with an infectious disease doctor as the law in Connecticut says that insurance companies do no have to pay for more than a month of IV Rocephin unless it is prescribed by a neurologist or infectious disease doctor. By this time, the fatigue was better, but my vision was worse. It was keeping me off balance and it felt as if my eyes were not working together and therefore I couldn't lock in on moving objects. (For this reason, I was unable to drive and walking was problematic where before I had trouble with the actual mechanics of walking.)
On July 21, 2006, I began to wonder whether I should have stopped the Betaseron. I decided to give it a try again, mainly because I was concerned that the last MRI had shown growth of the spinal lesion. Shortly thereafter, I went to see Neuro #4 again. He suggested IVIG (infused garbage to boost the immune system, for lack of a better description.) I initially agreed, but later changed my mind after reading fine print from paperwork he provided that IVIG is made from blood plasma and isn't properly tested for other disease, virus, HIV-etc.. Neuro#4 then recommended chemo, which I declined as I felt I was already getting better from the antibiotics. Specifically, the fatigue was better and the numbness was lessening again. On August 1, 2006, I stopped the Betaseron completely as I really felt it was not helping at all. On August 3, 2006, I went to see an Opthalmologist, DOC 12, as I was very concerned about my vision and balance. We discussed my MS diagnosis and my vision problems. My eyes were dialated for full testing. Diagnosis: 20/20 vision with Nystagmus (eyes shake left and right when stressed looking 30 degrees left or right) and Diplopia (double vision).
Interestingly enough, this doctor was aware that MS could be treated with antibiotics as several of his patients were diagnosed with Lyme induced MS, and had gotten much better from antibiotics. "Why aren't you on IV Rocephin?" he asked. I was floored that any other doctor knew of this treatment connection to MS and glad I decided to start the Rocephin (which was scheduled to start 1 week after the eye appointment) as I had been unsure whether to start the medication as the daily herxing was already so bad and the numbness was so extreme. This day was particularly bad as I could barely walk around without support at this time and the dilated eyes made me completely unable to walk. I was at a really low point, so it really helped to hear from the Opthalmologist that he had seen people get better on the IV antibiotics. Throughout the treatment, I was only using Activated Charcoal to detox my body and would only use Ibuprofen for pain issues. Later I used the Vitamin C flush with success as it felt. I also used Ambien and Lunesta for the insomnia. The Ambien made me feel worse the next day so my choice from there was always Lunesta.
On August 26, 2006, I started the IV Rocephin. At the time I started, I was also on Azithromycin, 200 mg/day and Minocycline 400 mg/day and just finished the Mepron cycle. The herxheimer reactions continued - intense tingling, itching, out-of-body experiences, sweats, chills-although the Rocephin did not seem to make it much worse. He monitored me very carefully with weekly blood draws to check white count and liver function. My white count dropped to 2.5 and the liver count was elevated, but the Doc said this was a normal reaction to Rocephin so I did not discontinue anything and the numbers rebalanced. Also, I had monthly ultrasounds to test for gallstones and or clotting in the IV line. Blood tests were done for any clotting disease/disorders. These were also done prior to the IV line insertion to be sure what my baseline was. On September 7, 2006, the Lyme MD started Tindamax, 1500 mg/day.
At this point, I was on Rocephin, Minocycline, Azithromycin and Tindamax. The herxheimer reaction got more intense and the out-of-body experiences seemed more dramatic. The Rocephin made me exhausted, immediately, during and after each infusion. The herxing was awful. I spent the days in bed doing what I could to get away from the herxing- sleeping,listening to music trying to read or watch TV. I experienced sweats and chills at different times through the days and nights. Every nerve was on edge and I experienced heavy itches/tingles. I was also dealing with leg and body spasms (restless leg syndrome) along with the extreme fatigue. With the reactions, I really wasn't able to sleep, either. There would be short periods of deep sleep and then up again at all hours. Overall, each symptom (numbness, vision, swallowing, speech, etc.) became elevated and my head was achy and swollen. Nevertheless, I stuck with it and did not discontinue any of the antibiotics or supplements.
Roughly one week after starting the Tindamax (approximately September 7, 2006), I felt my head beginning to clear. The brain fog began to lift and I would have days with short periods (a few minutes at a time) of feeling cognitively "normal." The first day I felt my head was clear for most of the day was September 18, 2006, which was the day I met with the infectious disease MD the Lyme MD referred me to. This, additionally and highly, validated the antibiotic treatment for me. I met with the ID doc and he agreed to continue prescribing the IV antibiotic. I continued to get better - the brain fog continued to clear, and my walking started to get better as my balance was getting better. Also, the numbness started to descend. First my head was no longer numb, then my chest was no longer numb, then the numbness left my legs. Remaining numbness was left to my hands only with periodic episodes in my right toe.
On October 2, 2006, my Lyme doc added Diflucan 200 mg/day to the mix. At this point, I was on Minocycline, Azithromycin, Tindamax, Rocephin and Diflucan. (Rifampin soon added.) The only numbness I was experiencing was in my hands. Roughly two weeks after starting the Diflucan, I had 2 distinct moments of validation/success, each, early in the morning. The first time was October 17, the second time was two days later. Each time, I had taken one Diflucan, 100 mg, at 5:30 am because I felt so bad I wanted to keep hitting it by stretching doses out. Both times, about 2 hours after the Diflucan, I felt the numbness "washing" out of my hands, up my arms, around my chest/abdomen and "out" of my body. The first time, the numbness in my hands abated, roughly, 60%. The second time, the numbness abated, roughly, another 30%. After the second time, the numbness in my hands was approximately 10% of what it had been at its worst. Today, the numbness in my hands is about 3-5% of what it was at its worst.
On October 28, 2006, I was starting on Rifampin 600 mg/day. Immediate reactions were heavy pins and needles in the hands and balance/vision way off. I also was dealing with a shakiness in the head and upper body along with soreness of muscles and wanting to be out of my body. On November 28, 2006, I finished the three months of the Rocephin. Although IV antibiotics can be dangerous (they can cause allergic reactions, gallstones, blood clots) I never had these problems with it. There was one evening when I felt as if my throat was swollen closed with caused more difficulty swallowing and also caused me to lose my voice. I wasn't sure whether it was an allergic reaction, so I went to the local ER and was treated by DOC 13, whom eventually injected me with high dose Benedryl-5,000ml. All standard blood work, etc., was normal. I was immediately high, silly, then exhaused. I slept for 2-3 hours in the hospital solid, and the problem cleared up. The next day I spoke with the Lyme MD whom told me I should not infuse myself with more Rocephin unless in the presence of a doctor. Therefore, the Lyme MD spoke with the local ER and arranged for me to get the next infusion in the hospital. Unfortunately, when I got to the ER, the ER doctor didn't want to monitor me while I infused myself, and he refused to do the infusion for me as he claimed the risk of allergic reaction was high. "Wouldn't you rather not deal with that? People have died from simple peanut allergies. Rocephin is so much more caustic," he said. He told me his daughter has MS and that he would never treat her with antibiotics as the treatment would not work. I was really upset by his comments and by the fact that I was unable to to get the Rocephin infused that day. I called the Lyme MD and we discussed that I do the next dose at the allergists office where the line was put in my arm.
I went in to see the allergist the next day and the infusion was done in 10 minutes. No reactions or issues came up. The allergist informed me any allergic reaction would literally happen in the first 10 minutes of the infusion if not immediately, so it was unlikely the throat symptoms had been from an allergic reaction-probably herxheimer. Therefore, I resumed infusing myself at home with the IV. Never needed to use any of the 3 Epi-pens I already had just for that reason. The only real reaction I had to dealing with the Rocephin was simply from the tube in my arm causing irritation. Pressure built up in the arm approximately where the end of the 8" tube was in the arm and progressed into the upper chest only on the left side. (The IV was inserted into the left arm.) This is thought to only be irritation from the tube in the vein as all the blood work never showed clotting disorders prior to and the ultrasounds throughout were always clear. Ibuprofen eliminated the problem when necessary. Today, the pressure has gone away mostly with hot showers and exercising the arm. Anyway, when I finished the Rocephin on November 28, the ID and the Lyme MD both advised me to go off all the antibiotics and see how I do. If I got worse they would put me back on the Rocephin; however, if I stayed well they would just keep me on maintenance antibiotics -pulsed orals).
I posted on cpnhelp.org and spoke with Dr. Stratton, and ultimately decided to stay on the antibiotics, mainly because I was still experiencing herxheimer reactions and therefore felt I was not yet cured. I wouldn't be able to withstand any relapses. I asked the Lyme MD to keep prescribing for me, which he agreed to do and continued to prescribe Rifampin, Tindamax, Minocycline and Diflucan. On December 15, 2006, the Lyme MD discontinued the Diflucan. On December 18, 2006, the Lyme MD replaced the Minocycline with Doxycyclinei 200 mg/day in an effort to help counter the balance issues. The symptoms and reactions at this time (ie: numbness, itches/tingles, etc..) all get more intense early evening lasting through the night and early morning. As I get up and move, they abate and balance out. The numbness in the hands I can feel coming and going like it's "washing" out of my fingers through the hand and out through my wrist. He also replaced the Tindamax with Factive (320 mg/day). At this point, I was on Doxyi 200 mg/day, Factive 320 mg/day and Rifampin 600 mg/day. It took some time but I slowly experienced resurgence of herxheimer reactions, with deeper extreme tingling and itching (mostly in my head/face and neck/upper chest); however, the Factive was ended shortly thereafter because I began to experience tendonitis in legs and wrists, which can occur with the Factive. Accordingly, the Lyme MD put me back on the Tindamax.
Today, I am on Tindamax 1500 mg/day, Rifampin 600 mg/day and Doxycycline 200 mg/day. My head is completely clear, my balance is much better (I'm regaining strength and energy, I am able to walk more properly and the numbness is gone save for 3-5% in my hands. My vision is slightly better but I still can't drive. The fatigue is better but still periodically there. I still have some trouble swallowing but hardly any. I still have the daily/nightly herxheimer reactions, but it's not nearly so severe. For example, I no longer experience sweats, chills or body spasms. The itching and tingling are not as severe as they were. I'm slowly beginning to be able to sleep better and through the night. My doc's next step discontinues the Tindamax, Rifampin and Doxycycline with one week off to allow my body to balance seeing how I do and then puttin me on high dose Tetracycline 2000 mg/day with Biaxin 1000 mg/day, Roxyi 200 mg/day and Mepron-another 6 week cycle.
On January 26, 2007, I met with a Neuro-Optometrist to again look at my vision issue. After 90 minutes of testing, he concluded I do not have Nystagmus. That was generally labeled. I deal with a vision imbalance that doesn't totally allow my motor function to keep up with regular vision. Vision is made up of 2 parts. The upper is standard vision, what you see. The lower is the motor that makes the body react to what your eyes are seeing or doing. I currently have a prescription of glasses that I am working with to counter the balance issue and to allow me to read without skewing lines or becoming tired too quickly because my upper vision portion is over-compensating for the lower. Time will tell whether succussful or not. If not, I may be looking at vision therapy on a much higher level.
My thoughts on the treatment path I chose are as follows:
1) I am amazed by how much better I am in a fairly quick timeframe. It's shocking to be so ill, i.e., mainly bed ridden due to exhaustion and muscle weakness, numbness, etc., and to be so much better 9 months later. As I said earlier, I still have 3-5% hand numbness, vision imbalance, some fatigue, minor balance issues, deep and wicked itches/tingles mostly in the head/neck but it is lessening and slight trouble swallowing at times. I also have shakiness in my head, which I attribute really to atrophy of muscles. I've lost roughly 25 pounds throughout this ordeal. Since I was only 165 lbs before this hit me, I'm only 140 lbs now. I/we feel I am 90% better today. My biggest hurdle is the vision issue. Balance, I am mostly able to control as long as I take it slowly so my vision works with my body. Numbness, I can deal with if necessary but I expect it to go away completely at some point.
Despite how much better I am, I know I have a long way to go yet. I wish others could feel my symptoms just for a moment because they look at me and think I'm fine and normal. They don't know what I am experiencing mentally or physically each day.
2) I plan to stay on the oral antibiotics for a minimum of another 6 months. This will give me a full year of treatment, which is discussed as minimum standard for the CAP treatment. I don't want to stop in the middle and get a relapse. After six months, I will further evaluate the situation, but I do think that I will need to take pulsed boosters for the rest of my life in some form, most likely in the form of pulsed orals every few months. I'll always do what I need to do -to stay on top.
3) I am actually glad this hit me so severely in the beginning only in respect to push us to find what was really happening. As we found it early, I'm also happy I had the chance to take so many antibiotics so quickly and that my body has dealt with it. Find it early-treat it fast and hard-less damage overall. Every case is different, but in my case, I truly felt the disease process was so progressive that I risked being irrevocably damaged if I didn't hit the bacteria hard and fast. I am not a doctor, so this is just my personal opinion.
4) I expect the lesions to heal in their own time. The last two MRI's I had, one in August and one in October showed that the disease process had stopped in its tracks. All the lesions were still there but no longer enhanced with GAD. There are no new lesions. My Lyme doc says the healing of lesions will take 1+ years. To me, the MRI results are the biggest validation of the antibiotic treatment.
5) Overall, mentally and physically, this treatment is extremely rough, but the diseases it treats ruin lives. It's not easy, day to day, herxing and living with symptoms, but in the larger picture this treatment can be rather quick and less problematic than the approved MS treatments such as chemotherapy, which help very little and can be very difficult to take. In my opinion, the CAP cures "MS". My validation of the CAP came in stages. With each herxheimer episode my symptoms abated a little each time and I felt better. Every/any herxheimer is not easy physically or mentally but literally each one made me feel better or more functional in the following days. Simply, if you have symptoms like I've written about, take a trial of strong antibiotics and the vitamin supplements. If you have herxheimer reactions, you would know there is infection within to ruin before it ruins you.
6) There are many more details I could add, but perhaps another time. If you have any qustions please feel free to ask and I will do my best to answer. I intend to always be involved and I wish to help as many people as I can. Living into my 100's after this treatment gives me roughly 70 years to help! I wish everyone the best in Life. So many people are responsible for helping me to get better and I am so grateful. I want to thank my darling wife, Alyson, for her undying strength, love, understanding, research, support and humor. I love you! I am a lucky man. I also want to thank, profoundly, my parents, Lee and Pat and my mother-in-law, Janet, for their love and un-wavering support. Most of all, I wish to thank the founders of www.cpnhelp.org, and the doctors who helped me get better -Drs. Wheldon and Stratton, without whom my wife would never have discovered the CAP treatment and my Lyme MD, whose treatment has given me back my life. Also, to my daughter, Evelyn Ann, thank you for your never ending smiles and joy from the moment you wake up each morning. I love you, Sweetheart! I am......a lucky man~Period!