EXCERPTS FROM LETTERS OF PATIENTS WITH ADVERSE REACTIONS TO HEPATITIS B VACCINE

(Numbers used in order to protect patient confidentiality) (Does not include numerous phone calls)

1. From doctor's report . " Probable confluence of multiple sclerosis with mild systemic lupus, known as "lupoid sclerosis". The probable etiology for this is her Heptavax vaccine.



2. From doctor's report . "Over the 6 years I have followed xxx, the major symptoms that she has manifested have included fatigue, cognitive dysfunction, sleep disturbances, muscle ache, weight gain, abdominal discomfort with nausea and diarrhea, and low grade fevers. In addition she has many episodes of chest discomfort and a pressure-like feeling in her chest, resulting in shortness of breath. Associated with this has been a positive antinuclear antibody with a normal sedimentation rate but elevated immune complexes initially. Although xxx has seen an array of excellent physicians over the last 6 years, she really does not fit any of the American Rheumatology Assn. Diagnostic categories.
   
   Over this time, I have come to the same conclusion Dr. xxxx suggested in 1991 of her symptom complex being substantially caused by the hepatitis B vaccine. It is my opinion, with reasonable medical certainty, that the vaccination stimulated an ongoing autoimmune disease with the manifestations outlined above.



3. 1st injection - stiff arm, fatigue started, suffered colds. 2nd injection - stated to lose weight and general fatigue continued. Colds on a regular basis. 3rd injection - weight loss and general fatigue continued.



4. I contracted an M.E. C.F.S type illness following the 3rd immunisation against Hep B last April, although I have made a great improvement, I am not yet fully recovered.
   
   I have been diagnosed as suffering from C.F.S., and my employers, a local N.H.S. Trust have cited the 3rd immunization as causing the illness at a recent Industrial Injuries Board. The drug used was "Energix B", sold and manufactured by Smith Kline Beecham.
   
   As a speech and language therapist working in the field of learning disabilities, I was required to have the jab as part of Trust policy. My boss, a 28 year old woman who had the jab a few weeks after me, also developed reactive arthritis.
   
   A blood test was taken a few months after the jab, and, although I had the full 3 injections, I had not developed any antibodies to Hepatitis. I was quite interested to read your notes that failure to respond to the vaccination is related to HLA, and that this might correspond to genetic factors in the development of auto-immune disorders.
   
   There is a small group of health workers here who have developed CFS/RA following vaccination.



5. My illness was diagnosed after some months as Post Viral Syndrome. I contracted it seven days after the last of the three Hepatitis B inoculations in September 1989. Previous to this time I was in the best of health. I was convinced that the inoculations were the cause. I had suffered after-effects to varying degrees from the first two jabs. I tried to convince the Boston Community Health Authority (who had administered the inoculations) that the vaccine was the main cause. Neither they nor the many medical specialists I have seen would countenance that the vaccine was implicated. Their argument was that the vaccine was man-made and not human and that the side-effects I described were unknown.



6. I have a fairly clear history of M.E. arising after Hepatitis B vaccination.



7. I would like to tell you the story of my sister, 25 years old. She was a very healthy and go-ahead student before having MS symptoms and many other diseases. Very few in France thought that the hepatitis B vaccine could generated severe adverse effects. Yet, her strange medical story was hard to understand without this possible interpretation, all the more because nobody in my family had every had MS, and because the crises and disorders were so brutal and so varied. My parents recently decided to write down in detail her medical story you can find here. They don't want it to be published. (not included as requested).



8. There are two women who contacted me lately who both got polyneuritis (I think that's what they said) after the Hep B vaccine and several who have chronic arthritis for the same reason. ....We also have one case which was one in Australia last November (1996) of a nursing sister who developed chronic arthritis which did not allow her to work following Hep B vaccination. She won a 6 figure award through worker's compensation. We also had 4 adults on our register (well, 2 of them have contacted me but have not yet filled out the reaction report forms), 2 of them developed chronic arthritis, 1 has polyneuritis...



9. I developed ME/CRFS, in March 1994, after a course of Hepatitis B vaccinations, which were required for my work. Since, I have been too ill to work again and really believe that it was the vaccination that is to blame.



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10. Until 1988 I was very health and worked in xxxxxxx Infirmary as a Senior Physiological Measurement Technician. In 19988 all staff in my department were given Hepatitis B vaccinations as we were seen to be at risk. I had three injections on 22.4.88, 20.5.88, and 14.10.88. During the last six months of the year I became aware of being extremely exhausted, constantly cold, feeling nauseous and sleeping excessively. I tried to carry on as normal thinking that I had just been overdoing things. I suffered from frequent colds, sore throats, headaches, teeth abscesses, boils, etc. Often my colleague at work would ask me if I felt okay because I looked very grey and unwell. By Christmas and New Year when I had some annual leave, I was going to bed at 11 PM and not waking up until 4 PM the following day. I returned to work after New Year not feeling rested at all.
    
    In January 1989 I developed the worst illness that I can remember since I had measles as a child. I had a terrible temperature, very bad headaches and felt nauseous constantly. I assumed it was flu, and returned to work after a week. As I continued to feel extremely unwell I had more time off sick, and returned to work after a week. As I continued to feel extremely unwell I had more time off sick and after returning yet again I went off sick again. I lost my job when I had been off sick for a year and at that point I consulted a trade union lawyer. After being examined by a consultant the lawyers received a medical report indicating that I was suffering from a post viral fatigue syndrome and "the symptoms related to any viral infection are almost certainly not related to the Hepatitis B vaccination as there is no known association with illness of this type." However over the last few years there seem to be a growing body of evidence to suggest that there is in fact a link. Although I have now got another job I still do not feel 100% recovered and I am still keen to pursue this, as this illness has a devastating effect on my life.



11. I am a qualified nurse and had recently moved to xxxxxxxx.. I joined the nurse bank in the local hospital and was required to have a course of Hep B vaccinations.
    
    My first vaccination was in 1990 around the autumn time and I remember being ill enough to be in bed for a week with what the doctor said was a flu-like virus. I recovered from that episode but was "put off" enough not to repeat the vaccinations and did not complete my course
    
    On accepting a new post within the same hospital in 1993 was advised to try again the vaccinations and did not complete my course.
    
    My first was on 21.5.93 and I continued until 13th Jan. 1994. Following a blood test on 15.4.94 which showed a poor response, two boosters in 1994 followed. Following another blood test in December 1994 I was told I was not immune to Hep B and was given instructions as to the procedure should I come into contact with Hep B via patients on needle-stick injury.
    
    During this time I had had various periods of sick-time, with the doctors calling it post-viral syndromes after various tests proving negative. Last May, I went in desperation to a doctor in my practice whom I know from work and knew he was sympathetic. He looked back over my record and the various test that had been inconclusive and diagnosed Fibromyalgia (M. E.) I continued to try and work but with episodes of sicktime becoming closer together I am now on long-term sick leave. Since my first diagnosis in May I have developed more symptoms of M.E. and am now exhausted and unable to do many of the activities I use to.



12. I am 33 years old and I use to work for social services (adults with learning difficulties). I was advised from work to have this vaccine.
    
    I started my course of injections in May 1994. I became ill after having the second vaccine, feeling sick, hot and cold sweats. It just felt like I was coming down with flu. This passed after a couple of days. I had to take time off work. I didn't want to have the third injection, but they said I needed to complete the course. After a couple of hours I was feeling ill again, it passed off within a couple of days.
    
    I went back for some blood tests about four months later. The results came back and showed it hadn't worked. So was told I needed a booster, (which I had near end of 1994 and beginning of 1995.) Within a couple of hours of having this injection I began to feel ill, feeling sick and diarrhea, hot and cold sweats feeling dizzy. Spent most of that day in bed thinking it would pass. When I tried to get up the next day it was worse. Pains in arms and legs, was sick, when I tried to get out of bed, my legs just wouldn't hold me, I felt like I was falling and spent the next few days in bed and had to take more time off work.
    
    I went back to work and found doing my job very difficult. As I was getting tired very quickly I was always getting colds and couldn't shake them off and severe sore throats, swelling of the face and neck and then getting laryngitis. I took medication which didn't help. It cleared for a few weeks and came back again the last time I had it, it lasted for 7 months. I had been off work for nearly a year.
    
    I went back six weeks for blood tests i.e. Hep B. The results came back I had no natural immunity to the Hep B and was told to have another booster which would have been the fifth. I refused. I hate to think what this one would have done to me.
    
    The tiredness was getting worse and walking quite difficult. So I went to my G.P. in 1995 June-July Why I was feeling like this he said, it was stress and wanted to put me on anti-depressants which I refused to take.
    
    I keep going back to the doctor until he would do something about this. He did lots of tests but everything came back normal.
    
    I went to see a specialist who said it was M.E. I told him about the Hep B but he just wouldn't accept this. In October 1996 I was retired on ill-health. I have been off work for over two years and have had M.D. for 3 years.
    
    I developed M.E. after my third dose of the Hepatitis B vaccine. My symptoms started after about ten days which included pins and needles and numbness in the lower limbs. Burning pains in the lower limbs. Strange pains popping all over the body and joint pains.



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13. My particular encounter was with Hepatavax in 1987. Since that time, I have been plagued with exacerbation and remission of multiple and varied multiple sclerosis-like symptoms. Not to give an "orphan recital" but because sometimes it is an encouragement to hear that you are not alone in your battle in the unknown territory of an unknown pathophysiology. I'll tell you the problems I've had with my version of our common "plague.>" (If this is not helpful for you'll skip to the next paragraph). The list that follows has expressed themselves in various combinations and various levels of severity over 10 years. The "flare-ups" I have, last from 2 to 4 months and are usually totally incapacitating. When they subside, I've been extremely happy I have minimal residual problems and can resume my life and work with a few modifications.
    
    The Proverbial list:
    1. Extreme fatigue-weakness to point of prostration. Even breathing is a chore.
    2. Sever left-burn, rt. sided nerve pain-esp. arm and leg.
    3. Complete altered numb like feeling of entire rt. side of body, including head.
    4. Hypersensitivity to stimuli on rt. side-hyper reflexia.
    5. Occillopsia
    6. Nystagmus
    
    Professionally, my 7 years of education as an RN and BSN are now limited in their advantage, as I avoid fatigue, so cannot work full time and progress to high level nurse management positions. Also have had to make a career alteration as am unable to work 12 hour shifts.



14. I have been looking for this kind of discussion about Hep. B. vaccine for about 2 years now. I would like to be able to tell you in length about the problems I have had since receiving this vaccine. I have lupus symptoms, I have never had a problem until I received the vaccine. I also work in the medical field and have for 12 years. I was very healthy and athletic before this vaccine. I have extreme joint pain, fatigue, rashes and a numerous amount of other symptoms right after the injection and some of the problems have remained. I have talked to VAERS, no one seems to find a correlation between the vaccine and these symptoms. I would appreciate any information concerning treatments and these symptoms.



15. How much of a relationship is having the Hep B vaccine and the hepatitis B vaccine and the progression of MS? I had the vaccine in 1994/95 and my MS has progressed rapidly since then. If my progression is due to the vaccine, can anything be done to reverse the affects o the vaccine? Would antiviral medication, such as famvir or aciclovir, be beneficial?



16. I am responding to the Perspective ME magazine...if they have a clear cut history of Hep B vaccination followed by ME/CFS" I believe I fit this description. Please contact me with more information.



17. My husband used to be an extremely healthy man (ex-Forces) until he had the vaccine--I will fax you a brief history of his state of health. He was diagnosed "Rheumatoid Arthritis" although x-rays haven't shown anything. We have been doing our own research locally and many people are experiencing problems. Two people we know have multiple sclerosis. My husband had the Energix B-Smith Kline Beecham product and their reaction was they only had 10 reactions in 100,000 doses. We don't believe it. Without drugs my husband could not work-- he takes 2 Violator a day and 2g of sulphasalazine each day. He was a medical and dental engineer in the Royal Naval Hospital, but he has now had to accept a desk job at Andover. (40 miles from home). The journey is no help to him--he gets very fatigued, and has to go to bed at 9 PM most evenings. He is in constant pain.



18. I began nurse training in August 1990 and was advised to have the course of 3 Hep B vaccinations. About 10 minutes after the first injection I collapsed and was unwell for 5 weeks. I had all M.E. like symptoms (exhaustion, muscle pain, and fatigue, joint pain, coordination and balance problems, memory loss, etc.). However, the hospital's Occupational Health department told me that no one was ever ill after the vaccinations.
    
    After restarting training I was advised to finish the course of injections, and eventually had the second one in February 1 991. I didn't pass out, but started feeling light-headed within an hour. After 24 hours I developed balance problems, and soon all the symptoms I experienced after the first injection returned. I first had the possibility of having M.E. mentioned after 3 months, and had the diagnosis confirmed after 10 months, following various tests, examinations, etc. My employers were not sympathetic and I eventually had my employment terminated due to ill-health.
    
    I have now been ill with M.E. for over 6.5 years with no real improvement, although one or two problems have been helped by homeopathic treatment. I am unable to work at all, and have to spend a lot of time resting.



19. I have a condition called "acute transverse myelitis" which hit me when I was 28 years old. I am nearly 32 y.o. now. Basically this condition is inflammation of the spinal cord. It is a very rare disease of the spinal cord--neurological disease, causing dehabilitating symptoms associated with the loss of spinal cord segment.
    
    I had a Hep B vaccine - Sept. 1993 and was struck down June 17, 1994.



20. I myself a Midwife have had one Hepatitis B vaccination in January 1995 on which I took a bad reaction. I felt my arm cold and tingly at the injection site. I flushed up, I was aware of not being able to move the left side of my body, then I had an out of body experience. I heard every word of the staff who panicked at this point, and heard one nurse telling the other to locate the doctor who was at the shop for a pint of milk. I heard them discuss my breathing my muscular activity and lack of pulse. I heard them calling me back and felt myself jolt in the chair to which the doctor felt a pulse in my neck. I did not require Adrenaline by this stage. I was told by the staff never to come back to the department for more vaccines as I gave them such a fright and that I was lucky to be alive. I was sent home unescorted, but the evening of the incident and the following morning I received calls from the department saying I had an anaphylactic reaction, then I was told I was like someone who had tetany. On the evening of the vaccine I felt very tired but due to the out of body experience I felt a sense of calmness.
    
    The next morning my muscles were painful, I felt extremely tired, and I had pain in my sternum. After telephone conversation I realized the seriousness of the incident, especially when I was told the department did not have a Brookes airway, and were too far away from the rest of the hospital to get help. They had redesigned the forms for the staff as there had been no spaces for next of kin and they had now ordered up a Brookes airway from the pharmacy and if I was a domestic or nursing auxiliary she would not be telling me this.
    
    Weeks after the incident, one nurse told me I was an actress and I should gain an Oscar for my performance. At this I was infuriated, I told my GP and I telephoned my trade union representative for advice. The matter was taken to the supposedly investigated and found that there was indeed now adequate equipment in the department. I did not take the case to a lawyer for fear of losing my job.
    
    I have had several viral illnesses, flu like illnesses, muscular pains, tiredness, and general lethargy since this day.
    
    I have no support from the Occupational Healthy Department probably frightened of opening up the case due to litigation, no support from the Management as I am classed as a trouble maker as I approached the Union. Last October my symptoms came to a head. I wanted to sleep all the time, I felt very lethargic muscular pains, swollen glands, sore throat, and nauseated. My GP took bloods which showed a significantly positive Monospot.
    
    The Monospot test remained positive until February 1997. Since this time I have had poor mobility and the symptoms remain. My GP said I have got Post Viral Syndrome. I am attending a Consultant Physician who has done viral studies, which were negative and I have been sent for an MRI scan to eliminate M.S.
    
    As I have been off work for approximately one year, the Management are now in the process of terminating my contraction. As I am on long term sick and also a NON RESPONDER to Hepatitis B my future in Nursing and Midwifery has just about come to a close. I feel very isolated with my case and sad I did not receive adequate support from the Health Service.



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21. I have worked as a Clinical Neuropsychologist for almost twenty years. During the last seven years I have resided in Florida and worked as a Clinical Physchologist for the Department of Health and Rehabilitative Services xxxxxxxxxxxxxxxxxxxxxx. On December 31, 1996, I received my first Hep B shot. On January 16, 1997 (more or less 2 weeks after) I developed my sumptuous. As I was driving towards work early in the morning I felt what could be best described as an electrical discharge running throughout the left side of my body, I experienced increased palpitations, chest pain, elevated blood pressure and a generalized state of anxiety. I drove myself to the emergency room of the hospital. They completed an EKG, and although my heart was responding "strangely" I was not having a heart attack. Following this I was rushed via ambulance to Tallahassee, they ran all possible tests and everything came out normal. During this whole time, I was experiencing difficulties breathing and swallowing. The doctors could not find anything wrong with me. I insisted there was something wrong, they tried to tell me I was "depressed". I insisted I was not, finally I went to a neurologist, to my request an MRI was completed. The results of the initial MRI indicated a demyelination process going on. But is was not conclusive. I had many but not the classical symptoms of MS. The neurologist acknowledge to me later that he thought I was just "depressed" and that nothing would show in the MRI, those were his thoughts. He has not been able to explain why do have this difficulties in breathing and swallowing. They are persistent difficulties and now they also include fatigue, pain in the lower joints, as well as pain in the whole body. Although I am being treated as though I have "MS" the diagnosis is not conclusive. I am currently taking Avonex once per week (shot) and Baclofen PRN.
    
    Prior to this event, I have been a very healthy person. I have been very active and some people thought that I could be best described as hyperactive. I have had no major health problems. I have had no indications of neurological involvement. In reality, I was okay until I had my first Hep B shot. What is my situation now, a battle against pain, fatigue and constant difficulties.



22. I am an American working in Pakistan with the United Nations. The 17 year old daughter of one of my staff has experienced a severe reaction to Hepatitis B vaccination. Can you advice of institutions, groups or individuals with special knowledge or experience relevant to such a case?



23. . My brother was a completely active (inexhaustible)and healthy male who had several advanced degrees in science when he came to work in my laboratory. He had a mild reaction after the first injection of the Hepatitis B vaccine and a severe reaction which has progressed since a few days following the second leaving him with long term serious disabilities including extreme fatigue short term memory loss, vision problems, severe joint and muscle pain, sensitivity to heat and cold, facial and skin rashes, and now POTS (postural orthostatic tacachardia syndrome) which is a cardiovascular problem related to viral infections. He has been officially diagnosed by 5 doctors as having a serious reaction to the hepatitis B vaccine and has been completely unable to continue his formerly active lifestyle.



24. I have observed two students (one a per-medical student and one a medical student) who have had serious reactions to the hepatitis B vaccine. One received her first injection and was sick with "flu-like" symptoms for a week. Three weeks after the second boost she was diagnosed with multiple sclerosis or optic neuritis as she had lost most of the eye sight in one of her eyes. After a few months she recovered most her eyesight but was told she had to have the third booster to get into medical school. Three weeks following this booster she had a more serious reaction, resulting in hospitalization, and now has permanent eye sight damage. The other student has just finished his third injection which was given to him while he had an upper respiratory tract infection and had serious eye "inflammation". He is currently on steroid medication and under observation.



25. . I am suffering from M.E. (Myalgic Encephalomyelitis) in a particular severe and disabling form. The onset was in 1974 following an acute fever, as a result of which I was physically disabled with muscle weakness and also mentally disabled with poor memory and concentration. I have managed reasonable well over the following 18 years but unfortunately I suffered a severe relapse in 1992 and 1994. This was due to the fact that I was first immunized in 1992 for Hepatitis B and again with a booster in 1994. I have only recently been diagnosed as suffering from M.E. and I have since discovered that this relapse from the vaccine is characteristic of the condition.



26. As I developed disabling chronic fatigue syndrome in May 1992, after a series of recombinant DNA Hepatitis vaccines late in 1991, I would very much appreciate the opportunity to participate in the above research study. By 1997, I have been retired from my profession with evidence of permanent brain damage and have confirmed my ongoing symptomology matches the list of possible vaccine side effects listed on the vaccine product brochure. During the past 51/2 years of disablement, I have met other ME/CFS disabled persons, who likewise developed symptoms after the above vaccination. If you would consider sending several questionnaires, I can find other respondents.



27. Just a short note to let you know that I have always suspected that I developed CFS after having Hep. B shots at work in 1991-1992. I have a chronic liver problem now also thyroid and diabetes. The doctors can't explain why and refuse to even listen to the story of the hepatitis B shots then CFS.



28. Could you please let me know what is involved in your research study of hepatitis B vaccination followed by ME/CFS symptoms. I had hepatitis B vaccination in September/October 96 and by January 97 I had symptoms which was diagnosed as CFS in Sept. 97. I would be interested in participating in your research study if I am a suitable candidate.



29. (from patient (medical chemist)about 5 months after first Hep B booster) . Once again I thank you for your time, effort and pertinent information. You are a bright light at the end of a long dark tunnel. Since I spoke with you I have seen my rheumatologist, and he is basically stymied and understandable so as this is such an uncommon and baffling illness. He told me that he is at a loss for a diagnosis and that rheumatoid arthritis like symptoms have disappeared or are being masked by the Prednisone I have been taking for four months. ........................... As you can well imagine from your own experience with your brother, this is a very frustrating to try to convince these people that my problems are real and debilitating, and this is complicated by the fact that very few people, even professionals, are even remotely familiar with it. ...Thankfully I am not totally incapacitated and I hope I never will be, however, I have lost almost fifteen days from my job since this episode began at the end of May. I never know when I go to bed at night how I am going to feel the next day. It is totally unpredictable.

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