“Does Fibromyalgia ever 'GO AWAY' or recede? Is there some sort of
'healing' that takes place that stops the pain from happening at any point? OR is
this appearing to be a permanent thing?”MEKI asks “Currently taking ULTRAM 200 in
morning and ULTRAM 100 at night... I realize some pain meds will eventually stop
working on each person and I'll have to change out Please know that I have strange
reactions to medications: Coffee puts me to sleep - Ritalin makes me eat everything
in the house and makes me pass out - Valiums make me grumpy - Serotonin Reuptakes
make me Yawn and have Tremors - Xanax just calms me down and Lorazepam lets me sleep
- I'm wide awake on Ambien - Ambien CR however makes me sleep for 2 days -
Percocets, Darvon and Vicodin while they take away pain do not do the things that my
friends talk about (like make them feel floaty or happy or anything... to me they
are like heavy duty Advil...) I'm also capable of stopping Opiods without any
dependency issues and have never abused ANY drug in my life - and rarely drink alcohol. ANYHOW... my question is --- what is my next step from ULTRAM?
“Am I doomed to a life of medication in order to get out of bed --- or to be able to
walk and not feel like I'm 180 years old?”
PROF. NICOLSON'S RESONSE: You are not doomed to a life with FMS. However, it would help to know if you have an underlying condition that could be responsible for your pain. For example, we have found that over 70% of FMS patients have chronic infections that actually invade nerve cells and may render them hypersensitive. You can imagine what this could do to pain receptors and neurons. We have found that treating FMS patients for their chronic infections slowly returns their nerve cells to less hypersensitive states, resulting in less pain. In your case, you should seek some support from your physician to identify if you have one or more (the usual situation) chronic intracellular bacterial and viral infections. A tip-off that you might have infections is that you have other signs/symptoms that are unrelated to your pain, such as other neurological symptoms, diarrhea or IBS, vision or hearing problems, skin problems, cardiovascular problems, etc. Most FMS patients that have infections often have 20-30 or more signs/symptoms that are not related to their peripheral pain. The good news is that these infections can be treated, and FMS patients have benefited from their treatment, but the treatment is long-term and slow. More information can be found on our website, www.immed.org, under Fatiguing Illnesses and Treatment Considerations.
1. “Do you think my symptoms speak for EBV (or other virus/microbe) reactivation in
brainstem/brain nerves?”2. “If yes, what can be done - medication (Pamelor?), high
doses of vit B, aciclovir, remedy...?”
September 2008 Present Time: Still having minor AB and Chest Pains, Bowel Movements just not the same as prior to Dec07, Back of the head numbing and brain
freeze/tingling, seems to have also moved to my face and jaw area, seem to be having
some balance issues not always but does happen. Minor back pains, Brain Fog (Just
seem to be out of it). Vision appears to be worse/blurry up close, (have been to eye
doc no change) Still tired but not as severe as early in the year, Un- refreshing
sleep, Sore Back(seems to always need popped, Periodical a stopped up head feeling
and very minor pain in and around ears. Will sometimes have tenderness in Lymph
nodes in Neck, Armpit and Groin. There are no factors that seem to change the above
it can be morning or evening seems to progress as the day goes on. Do not have all
symptoms at the same time but have some of them everyday. Results of testing are
enclosed for your review.
History I am 47 years of age 6 FT-190 pounds, weekend beer drinker and a reformed
smoker (quit in Jan 07) Up to Dec 07 NO health problems, had probable been to a
Doctors Office 10 times total in my life. In Dec 07 I was on a business trip in San
Antonio, Tx when I began experiencing symptoms (all of a sudden like someone flipped
a switch) that included the following. Chest Pains and Burning (felt hot to the
touch) Back of the head numbing and what felt like an Ice Cream brain freeze. I
also had this out of it feeling like a BRAIN FOG. Not wanting to have a problem in
another town, I left and returned home 7 hours away. My wife drove me to a clinic
where I was put on a EKG machine and the clinic Doc advised all ok gave me some
Meclizine put me back on Prevacid (which I had been on years earlier) for Acid
reflux and sent me on my way. At this time I did not have a Primary Doc and made an
appointment with one. This doc did Complete Labs, and found nothing but elevated
EBV numbers. Doc advised would look at numbers again in 30 days due to this being a
Virus there was nothing else to do but Time also gave me some sinus sprays. This
was a REALLY BAD time from the months of Jan-May I felt terrible, Chest Pains which
really had me concerned, TIRED all the time could not wait to get to the bed or
couch, loss of appetite, cold all the time, Dizzy/Lightheaded, back of the head
pain(really bad that a aspirin would not help) , AB Pains, Irregular Bowel movements
(still everyday but not as much product), Facial numbness/tingling, Brain Fog, Did
not want to do anything. These was of great concern and due to not EVER having
medical issues I returned several times to my family doctor and the following are
the test and medications I have been on during this experience.
Test: Blood Test-X 5 CBC, Comprehensive Metabolic Panel, Lipid, PSA, TSH, Lyme, HEP Panel, HIV Panel, Rheumatoid Arth. Factor, Sedimentation Rate-Westergren, EBV Panel, B-12, Alpha Fetoprotein Serum, H. Pylori. From the months of Jan08 to the last one Sept08
Results: With exception of EBV numbers (which all Docs say is no longer a concern)
and up and down Cholesterol LDL sometimes a little high--- ALL NORMAL XRAYS and CT SCANS-- MRI-(April08) Brain(Normal) and C-Spine-(May08) (see results under other)
CT scan Heart (Feb08) and Abdominal (June08 Prior to Colonoscopy) ---All Normal
Chest X-ray X 2 (June 08) this one remarked a few calcified granulomas are
present. The Second (April08) listed Brocades otherwise No acute Cardio disease
identified. Colonoscopy and Endoscopy (June08) —Acid Reflux No other problems
identified ENT exam (Sept 08) - All Normal Full Cardio Work-up (Feb08) Echo and CT
scan, Carotid Artery Ultrasound- All NormalL Medications: That I am currently
using—Prevacid, (Acid Reflux) Dicyclomine spastic colon-(only three times did not
like side effects) some natural meds by Dr. Jernigan’s Borrelogen, Nutrametrix-OPC,
Fish Oil Tablets. Nortriptyline (Pamelor) Other: C-spine Impression: Neural
Foraminal caliber is low normal or mildly narrowed throughout the cervical spine.
This appears to be the result on congenital factors as I see no evidence of facet or
uncovertebral hypertrophy. Disc morphology is well maintained, as is spinal canal
diameter. Have also seen an Infectious Disease Dr. and a Second M.D
PROF. NICOLSON'S RESPONSE: I consider it likely that you have other infections that are much worse than EBV. The reason for this is the variety of signs and symptoms that you present with and the lack of testing for other chronic infections (Mycoplasma, Chlamydia pneumoniae, CMV, etc.) and the finding that EBV is usually associated with additional infections. These are commonly found as systemic infections in FMS patients, and they are quite capable of causing a wide variety of signs/symptoms. Unfortunately, most Infectious Disease specialists will not recognize or test for these chronic infections, such as Mycoplasma, C. pneumoniae, Borrelia, and other viruses, mainly because they are never taught about them during their training (I know this well from teaching medical students for over 25 years!). Thus you may have to educate your physician on the possible role of multiple infections in FMS.
Wooden asks: “Is there any new hope for pulmonary fibrosis patients?”
Response: Idiopathic Pulmonary fibrosis is a response to chronic inflammation of the lung cells but more recently evidence has suggested that it may be an abnormal healing response to chronic lung injury. Although the cause(s) of IPF are still not known, recent research indicates that fibroblasts that secrete the collagen and other materials that eventually decrease oxygen exchange across the lungs into the blood circulation in IPF are attracted to sites in the lungs where factors that attract fibroblasts are secreted, likely due to local injury. In animal models this attraction process has been blocked by interfering with the chemoattractant factors, and this should eventually be developed as a new treatment of IPF.
PlateletGal asks “What are your thoughts on the flu shot in people who have immune
dysfunction ? I know I’ve had one flu shot and I was quite ill from it. I also get
very ill when I have allergy injections and will never get allergy shots again. I’ve
met a lot of other CFS patients who have had some of the same experiences.
PROF. NICOLSON'S RESONSE: When patients have adverse reactions to vaccines, I usually suggest that they discuss this with their physicians with the notion that such vaccines should be avoided when adverse reactions occur. The reactions are an indication that your body is reacting to the vaccines in ways that are not beneficial to your health. Avoiding these warning signs and continuing on with the same vaccine (or similar vaccines) can result in major problems.
PlateletGal asks “Can you tell me a little bit about your immune enhancement
strategies and are these therapies available at your clinic or available in clinics
around the country?”
PROF. NICOLSON'S RESPONSE: Since we are a nonprofit research organization, we can try a number of strategies for immune enhancement. In our institution this usually takes the form of boosting the immune system by involving a number of different over-the-counter products. Some examples are immune boosting carbohydrates, transfer factors, natural products, among others, that can result in boosting the immune system. What we have found is that each patient is different in terms of what works and does not work in enhancing the immune system. This usually means that each patient/physician has to experiment a bit to find the immune enhancement products that work. Some examples can be found in the second download document under Treatment Considerations on our website www.immed.org.
PlateletGal asks “What are your thoughts on Valcyte for Chronic Fatigue Syndrome ?
And does Valcyte kill mycoplasmas ?”
PROF. NICOLSON'S RESPONSE: Valcyte does not kill mycoplasmas and is generally used against certain viruses. Antibiotics are used for intracellular bacterial infections like Mycoplasmas.
SharJ asks: “Does the symptoms of not remembering things and bumping into walls or
what ever get worse with time?” (fibromyalgia diagnosis)
PROF. NICOLSON'S RESPONSE It certainly can if symptoms or underlying problems are left untreated. Chronic conditions like FMS usually progress slowly, so this could happen slowly over time. Alternatively, they could get slowly better over time.
Cindy378 asks: I'm a 52 year old woman and have been suffering numerous symptoms
since last year with a positive ANA at that time of 1:320. Have been diagnosed with
Raynaud's phenomenon recently and have been told by my hairdresser that my hair is
thinning. Feeling nauseous more often than not, and suffer from headaches also. Have
been on Effexor for three months due to the anxiety I was experiencing from dealing
with this for an extended period of time. Latest ANA is now 1:640 (taken by my local doc) and have another appt. with my rheumatologist next week. Have not seen him since June. My questions are these--I have developed what look like smooth solid white circles (the largest the size of pencil erasers) on my lower legs. No pigment in my skin there now. And I have also developed tenderness under my right ribcage.
Besides all the joint pain I've been experiencing- this last pain is uncomfortable and different. Do the circles and the upper quadrant pain along with the other symptoms sound at all like Lupus or any other kind of auto-immune disorder? Have
been feeling so poorly for such a long time that I would really appreciate any kind of advice for treatment that I can get. Thank you so much~ cindy3785
PROF. NICOLSON'S RESPONSE: Your symptoms remind me of some patients that we have seen that have intracellular bacterial infections (Mycoplasma, Borrelia, Chlamydia, Brucella, etc.). If this is the case and you have such infections, then their successful treatment, usually a difficult task in itself, results in eventual resolution in most patients.
cindy903 asks “What will it take for Lyme Disease to be taken seriously among
physicians practicing conventional medicine?”
PROF. NICOLSON's RESPONSE: I think that the medical profession has to get away from the politics of Lyme Disease before any real progress can be made. There has been a concerted effort in mainstream medicine to down-play the seriousness of Lyme Disease, especially chronic Lyme Disease. One of the oldest professional societies, the Infectious Disease Society, has done a major disservice to patients with LD by down-playing chronic LD. Basically the traditional ID societies although excellent with acute infections have traditionally left chronic infections to other specialists, such as rheumatologists. This is finally being rectified, but it took a major lawsuit to force the society to recognize some of the approaches used by Lyme physicians and the International Lyme and Associated Diseases Society (ILADS).
My PCP barely prescribed any antibiotics for me when I presented with a classic EM rash. A month later he turned me away when I experienced symptoms of early disseminated Lyme. I now have an unclear prognosis after I switched doctors and my
blood test revealed I have now have acute Lyme disease.
The people who lose the most while the debate is under way are the patients themselves. Turning folks away who still experience symptoms is a direct violation of the sacred Hippocratic oath. ”Do you believe that complications can persist even after the standard 10 days of antibiotics?”
Prof. Nicolson’s Response: I do not believe that 10 days of antibiotic will be sufficient to treat Lyme Disease, even in the initial stages. When it reaches the chronic stages, LD is much more difficult to treat. It is thought by many that this may be due to the many co-infections that exist in LD, the disseminated nature of the disease and the cyclic nature of the Borrelia burgdorferi and its several co-infections (Mycoplasma, Babesia, Borrelia, Ehrlichia, etc.).
Deek64 writes, “My 1st Dx was Autonomic Dysfunction, positive tilt table, now with Pure Autonomic Failure -vs- MSA, the DX of CFS/Fibro came 2 years later. Having a difficult time getting a physician to follow me wth the vast aray of problems. Just
been rejected by Johns Hopkins and not sure where to turn now. The Auto Dys seems to be exacerbated by the CFS/Fibro, so which DX should I primarily be trying to get treated? Would the Auto Dys 'calm down' if I could get the other problems treated?
Every physician has totally rejected the idea of any infection could be at the root of this even though with freq. infections and a recent emergency surgery for massive infection in the mouth and jawbone, they advised I would have been dead in another
24 hours if I hadn't rejected the treating physicians advice to go home and went to the ER myself. Any guidance?”
PROF. NICOLSON'S RESPONSE: You obviously require a physician with some breadth of knowledge. Dismissing chronic infections out of hand is ridiculous, and you should seek out a physician through local patient support groups. It is my experience that support groups usually have a good idea who are the good physicians in the community.
Monkey1mill writes, “My question for dr is does having fibro, restless leg syndrome Periphreal Artery disease, OA & sciatica all contribute to making pain worse than having just 1 or 2 of these? Do they all contribute to fatigue so bad that I am more
than fatigued but actually weak?”
PROF. NICOLSON'S RESPONSE: Although I cannot answer your question directly, it is likely that all of these contribute to your overall problems, because each of these can cause pain and collectively they may contribute to your overall situation. Fatigue is different from weakness, but you can have both together.
Carisa writes, These are my titer for EBV in July 2006-
Acute Infection Antibodies-6 Early Antigen-92 Ab VCA-3308 Nuclear Antigen Ab-1478 Titers in November 2007- Acute Infection Antibodies-4 Early Antigen-118 Ab VCA-2,703
Nuclear Antigen Ab-1131 Titers in January 2008- Acute Infection Antibodies-8 Early Antigen-139 Ab VCA-3,346 Nuclear Antigen Ab-1,138 I have had similar numbers in
other years. Does this indicate chronic fatigue, if so, what can I do? Are these numbers dangerous? I have read online that they can be, but my doctor does not seem to think they are dangerous, although they are the highest she has ever seen?
PROF. NICHOLSON'S RESPONSE: What these tests tell me is that you have an underlying infection(s). Your physician should try to identify such infection(s) and treat them appropriately.
One more question, it goes along with my other question, is if my having Hashimoto's thyroiditis could be a cause of why my EBV doesn't seem to go away? Also, I wanted to let him know the symptoms that I have of chronic fatigue/ebv. Those symptoms are night sweats off and on over the last 5 years, heavy arms and legs off and on, extreme fatigue off and on, the fatigue will come for several months, then leave for several months, stomach issues, gerd, infertility, dizziness, racing heart, shortness of breath, and consistant low white blood cell count. Usually in the range of 2.9-3.8. I did have a bone marrow biopsy to check for lymphoma and luekemia, it came back fine so I am clear of those things. The symptoms I listed above come and go.
PROF. NICHOLSON'S RESPONSE: In such cases chronic bacterial infections are often found, especially with the thyroid problems and fatigue. These are commonly found in patients with Mycoplasmas, for example.
1) Do you believe all or most autoimmune diseases stem from mycoplasma infections and/or some type of viral infection?
PROF. NICOLSON'S RESPONSE: If not Mycoplasma, then Chlamydia pn., Borrelia b., etc., among other infections. Also, viruses can contribute to this problem.
2) I have Fibromyalgia and my symptoms appeared to have gotten worse following treatment with ampicillin for about 6 mths for acne. I also had a lot of stress over the past year. I now have joint aches and other problems with inflammation and I am worried I have another autoimmune disease now in addition to Fibro. I don't believe these symptoms are related to a 'die off' reaction. I have read treatment with certain antibiotics can actually trigger autoimmune diseases like Lupus and Fibromyalgia. I am confused because I have also read that mycoplasma infections are treated with antibiotics. I am currently being treated with doxycycline, but concerned about it making my situation worse. Do you believe treatment with antibiotics like doxycycline are safe and effective for all autoimmune diseases - in particular Fibromyalgia and Lupus? Are pencillins contraindicated? Which is better?
PROF. NICOLSON'S RESPONSE: In cases where penicillins have made the situation worse, we look for cell-wall deficient bacterial infections. These microorganisms are not affected by penicillins, and treatment with such antibiotics usually makes the condition worse. Broad spectrum antibiotics like doxycycline are very safe and well tolerated, and are often used for long-term therapy of cell-wall deficient bacteria like Mycoplasmas.
3) Plaquenil is a prescription drug used to treat Lupus, Rheumatoid Arthritis, and also Malaria. My speculation is this
drug has some kind of anti-bacterial effect. In your professional opinion, would doxycycline and/or other antibiotics have the same effect as the prescription drug Plaquenil with less side effects?
PROF. NICOLSON'S RESPONSE: Plaquenil may not yield the same response as doxycycline because they are different anti-microbial drugs that attack different targets. Plaquenil was originally developed as an anti-malarial drug but it has some effect on bacterial infections as well. Doxycycline was developed as an anti-bacterial drug but it also has some other anti-microbial effects as well (but it does not act as an antiviral).
4) Do you recommend testing everyone with an
autoimmune disease for mycoplasma infections? If so, what test do you recommend and who do you contact to get tested?
PROF. NICOLSON'S RESPONSE: We generally recommend testing for Mycoplasma species, because it is so often an important infection in many fatiguing illness, neurodegenerative and autoimmune diseases. . I have reviewed this recently for Laboratory Medicine, the No. 1 lab pathology journal in the world (Nicolson, G.L. Chronic infections in neurodegenerative and neurobehavioral diseases. Lab Medicine 2008; 39(5): 291-299.). Testing is another problem, because there are few commercial labs that can do this testing with molecular techniques. We generally first recommend an antibody test, even though they are not very sensitive and often are false-negative. They are, however, very cheap compared to molecular tests, such as PCR, which can be expensive.
5) I was also diagnosed this past year with a
severe vitamin D deficiency when I was diagnosed with Fibromyalgia and was given high doses of vitamin D. I am uncertain as to whether this contributed to the worsening of my symptoms. Do you believe there is a connection with Vitamin D intake to worsening of the body's defense against intracellular pathogens like mycoplasma infections? If so, why can you explain why this occurs?
PROF. NICOLSON'S RESPONSE: There are a number of possible reasons for this, and perhaps high-dose Vitamin D is not indicated. One of the treatments for Mycoplasma utilizes low Vitamin D treatment (so-called Marshall Protocol).
6) Why do you think females are more susceptible to autoimmune disease than males?
PROF. NICOLSON'S RESPONSE: The reasons for this are not known but could reflect differences in hormonal status, immune systems, among other possibilities.
7) Do you recommend any natural treatment other than vitamins and amino acids to destroy mycoplasma infections or other intracellular infections?
Thank you in advance for your responses. Ree4tu
PROF. NICOLSON'S RESPONSE: Yes, we recommend that patients try a trio of Amazon natural products made by Rain Tree in Texas (Myco+, A-F and Immune Support). Some patients have done well on these three products, especially after antibiotic therapy to prevent relapses.
Hello -- Have there been any studies done regarding the incidence of fibromyalgiawithin certain occupations? I haven't been diagnosed with it, but I have had a neurologist tell me that I don't have MS and 'probably just have' fibromyalgia. My symptoms began many years ago -- I was in my 2nd trimester of pregnancy and had just started a job as a histotechnologist (exposure to formalin, xylene and other
solvents.) Thank you.
PROF. NICOLSON'S RESPONSE: I have heard (at conferences) that health care workers are at increased risk for FMS, but I have not seen the data. I consider that there is a fine line between MS-like symptoms and FMS. Often this is due to chronic intracellular infections like Mycoplasma or viruses. These infections can trigger autoimmune reactions by stimulating the release of cell antigens that stimulate autoimmune immune responses.
1) Could a person with an ANA of 1:2,560, normal sed and all other autoimmune test
(Anti-DNA) have anything else but an autoimmune disease. (pattern homogeneous) 2)
What would be your suggested course of treatment? I am currently on Plaquinel and
am doing so much better. It has given me some relief from some terrible symptoms.
PROF. NICOLSON'S RESPONSE: You might also do well on anti-bacterials like doxycycline or minocycline and should discuss this with your physician.
3) I also have hydronephrosis and a partial uretopelvic junction obstruction.
Could this obstruction be caused by the possible Lupus and what would be your suggested course? KaraJo
Our 17 year old daughter was diagnosed with 'mono like virus' last February. She slept for about a week and a half about 20 hours a day. Since May she has been complaining of headaches and bouts of fatigue again. Our Dr has tested her for
'everything'..CT scan, MRI, blood tests and even put her on anti-depressants. She quit taking them since she said she felt terrrible then. Couldn't this still be the virus? And if so would extra vitamins help?
PROF. NICOLSON'S RESPONSE: It could, as well as secondary infections. Vitamins help maintain the immune system, so in that regard they are helpful, but they are not really anti-infectious.
Thank you for taking the time to help us with our questions.
I will try to be as brief as possible. In Dec 2007, I started having problems with my Armour thyroid which I was on for 40 years - heart palpitations, etc....over the rest of 2008 I had continuing problems, changing medications, etc. After seeing an endocinologist in the Spring for several months, I then started seeing a holisitic doctor to check all of my hormones, etc. Results show adrenal fatigue/stress, thyroid out of sync, etc. But in late August because I was not getting any better, she tested me for Epstein Barr and I tested positive. Since that time I continue to
have severe fatigue and flu like feeling all the time. Hard to function much. I am having vitamin I. V.'s once a week and taking some other vitamins to support the adrenals and we are working with my thyroid medication. My question is this: I am
a 65 year old female and I know that I am very run down over all the months of stress wondering what was wrong with me and now finding out that I do have EBV and adrenal issues - and there is no treatment for EBV - the doctor mentioned chronic fatigue. I am not sure if that is what I have - she says that when the virus markers go back to normal, I should feel better. In your experience, this seem to be a very slow process and from what I read this is true. I am trying to cope and find myself very depressed over all these months of being ill - and now feeling even moreso lately.
Any insight you can give me would be appreciated. Thanks, Liz
PROF. NICOLSON'S RESPONSE: Although some feel that EBV is an important infection, I am of the opinion that it indicates that the immune system is suppressed and more pathogenic infections could be present. We have seen similar situations before, and in almost every case additional bacterial and viral infections were present, and when these were effectively treated, significant improvements were seen.
Hi, My question is related to the connection between EBV/CFS and Hashimoto/Hypothyroid. My feeling is that being infected with EBV will somehow develop, for some people, into hypothyroidisms. This is my story: November 2007 I
was diagnosed with Hypothyroid and Hasimoto. The doctor started me on Levothyroxine 75mcg. I was OK for a while but I was not having the energy I used to have. During the summer, I start feeling very tired. I went back to the doctor and after the
blood test results my THS was back up and I was positive for chronic EBV, (EBV was 4.59 and the EBV Nuclear AG >5). The doctor changed my medication a few more times. I start having my usual flu like symptoms specific for the EBV, sore throat, low fever, joint pains, and hart palpitations. After taking high doses of vitamin C, Bs, multi, eventually my sore throat vent away.
I do have two thyroid nodules (4 mm and 3mm) that were tested by sonography two times with no changes. I am also taking bioidentical hormones, estrogen, and progesterone and I have high blood pressure for which I take medication. One more thing, the 'brain fog' it's one of my main symptoms. This is really
interfering with my life as it's hard to control it when I am at work and I need 100% of my brain. I am not sure if this is EBV or thyroid related, as it got better especially with my T3 (Armour) medication.Even I was just diagnosed with EBV I know
I had this from my childhood, always getting sick with sore throat, tired, hard to do physical activity. Back then I had pneumonia two times; I was diagnosed with Mitral Valve Prolapse. When I was getting sick, sometimes for weeks or even months, I was always given big quantities of antibiotics; my physical resistance was always low, always tired. Occasionally I have herpes simplex on my lips. But the most that bothers me is getting the sore throats and joint pains, sometimes with fever.
Usually I treat myself with aspirin and vitamin C, or I go to the doctor and get the
usual antibiotics. Now as I finally understood the cause of me getting always sick I would like to know what the solution to get rid of the EBV is. Is the EBV responsible for me getting Hypothyroid? I do not have anybody in the family with thyroid problems.
Thank you for your time.
PROF. NICOLSON'S RESPONSE: See response above. I am of the opinion that EBV may not be the final or only culprit. In such cases, we have almost always found other intracellular bacterial (and viral) infections.
I’m a 46-year-old female. I was diagnosed with FMS last February. In the ER with a very bad FMS flare-up last April, I had an all-over body spasm, kind of like the hypnic jerks I often got when falling asleep, except that I was wide awake, and it
lasted for 10-15 seconds. The ER doctor said it was related to my FMS. However, when I followed up with my GP, neurologist, and rheumatologist, none had ever seen anything like it. Prior to the trip to the ER, my neurologist was treating me for almost daily migraines with 100 mg a day of Topamax and Imitrex and Zomig nasal sprays. It turned out the 'migraines' were actually sinus headaches. The untreated sinus infection and a severe UTI had caused the flare-up that landed me in the ER. At that time, I was on roughly 10 different medications, including Cymbalta, the commercials for which warn not to use it with migraine meds. (Unfortunately, I've since thrown out all the other meds, so I can't tell you what they were.) It was my initial conclusion that the myoclonus was caused by a drug interaction. However, I'm off all the meds except the Cymbalta (40 mg daily), and the myoclonus continues.
The myoclonus episodes occur when the weather changes, when I have bad FMS flare-ups, and when I am overly tired. Before they occur, I can feel them coming on, though I lack the words to describe the feeling. It can range from a hiccup-like body jerk to a bizarre movement (like my legs fly out in front of me when I'm sitting and violently flutter-kick, shimmying my shoulders, or even flapping my arms like a chicken. They're actually pretty hilarious to watch, and keeping a good sense of humor about them helps tremendously!) They also happen every night when I relax to try to fall asleep. Because they are so violent, I have to take 0.5-1 mg of Klonopin to be still enough to fall asleep. I don't like taking the medication, though, because it makes getting up in the morning even more difficult. I would appreciate any information you can give me that I can pass on to my doctors.
PROF. NICOLSON'S RESPONSE: I would suggest to your physicians that they check for chronic intracellular bacterial (and viral) infections. In cases like yours we almost always find multiple infections.
I am 32 y.o. F that developed a severe EBV infection 5 years ago and have suffered from bouts of severe fatigue, low energy and altered sleep ever since. I have a family history of multiple sclerosis (first cousin died at age 50 from respitory complication from the disease). Since December of '07' I have had 3 relapse/remissions of major neurological symptoms, loss of balance, muscle weakness, altered gait, severe fatigue, heat intolerance, severe muscle spasms in my back and legs, and loss of sensation from the waist down. All the typical MS mimics have been ruled out....No primary myopathy diseases, Lyme disease, autoimmune collagen-vascular diseases, myasthenia gravis, hormonal/thyroid disease. I have not been diagnosed with MS yet because I haven't shown MS type lesions on conventional MRI w/o contrast and my clinical exam showed no abnormal reflexes. My neurologist just wants to wait and closely monitor me and repeat the imagining a 3T MRI and possibly do magnetization transfer imaging if I have another relapse. He doesn't want to prescribe me any medication at this time to help manage symptoms because he wants to be able to document everything and not mask my symptoms. In light of my medical/family history what other tests would you recommend that I do to rule in or rule out the diagnosis of MS? Are there any natural supplements that would be helpful in suppressing the EBV infection that may have triggered my autoimmune MS symptoms?
PROF. NICHOLSON'S RESPONSE: Often in cases where a clear cut diagnosis is not available, but elements (signs/symptoms) of various diseases, such as rheumatic, autoimmune, etc., are found indicates to me that chronic intracellular bacterial (and possible viral) infections are present. There are some natural supplements that have helped patients, such as immune enhancement (it can actually help, even though it seems counter-indicated) and particular supplements for chronic infections. You can find a list of some of these on our website, www.immed.org, under Treatment Considerations (download document #2).
Just had a quick question. I have Hashimoto's thyroiditis and back in 2003 I was feeling quite ill and fatigued. The Dr. did bloodwork and said I showed antibodies to epstein barr. Here is my question, I have to have an hiv test because I had an unprotected encounter with an ex boyfriend. Everything I have been reading concerns me that I will have a false positive test. It all says that epstein barr and Hashimotos (because it is autoimmune) can cause a false positive for hiv. Do you know
anyhting about this? Thanks so much.
PROF. NICOLSON'S RESPONSE: We have seen false-positive tests for HIV-1 in patients who have chronic intracellular bacterial infections. For example, after the first Gulf War, many veterans who had Mycoplasma fermentans infections also came up positive for HIV-1 in antibody tests (but usually negative in further molecular tests for HIV-1 genes). In this case we found part of the HIV-1 env gene but not other HIV-1 genes in the veterans, thus they did not have HIV-1. It turns out that the part of the HIV-1 env gene was in the Mycoplasma, and this likely caused the false-positive tests for HIV.
I am a 60-year old female with Sjogen's Syndrome and an abnormal protein electrophoresis. I would like to know if your antibiotic protocol would be appropriate for my case and if you have any research on mycoplasma infections in Sjogren’s patients?
PROF. NICOLSON'S RESPONSE: We have limited experience with Sjorgren’s patients, but in those that we tested, most came up positive for Mycoplasma species. In those cases, the patients did quite well on antibiotic therapies.
kitty51 writes: I have a pressure in my head and its like fuzzy feeling and while this is happening I cant concentrate. It feels like Ive taken medication that doesnt agree with me and it is hard to explain, but when the feeling passes I don’t remember most things Ive said and done during that time. My fibro is a lot worse
since this has been occuring. Although I am not a drinker, it feels like I am intoxicated. Is this normal with fibro? And is there anything I can do about it?
PROF. NICOLSON'S RESPONSE: From the myriad of signs/symptoms and your specific symptoms relating to immune responses, lymph nodes, vision, hearing, cardiovascular, etc. the only thing that I can think of is systemic intracellular bacterial (and possibly viral) infections. These are the only things that we have found repeatedly in patients with so many signs/symptoms.
I also want to thank you for all your time and effort you put into this Q &A for all of us. You are terrific for doing this!!!!!!!!!! It was very informative and gave me an answer I really wanted to have answered.
Job well done, can't thank you enough. Your the best:)
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