Thank you to all of the members here who gave me permission to post their questions and patiently awaited for Dr. Nicolson's response. We would like to thank Dr. Nicolson once again for doing this and especially for answering additional questions.
"I've been having constant pain in the area of my spleen for the past month. I'm not scheduled to see my rheumatologist until the end of this month. Is there a specific test I could request that might tie all this together?"
"Finally, I'm interpreting your reponses to my question and those of others that treating underlying infections offers promise of real recovery. Is this correct??? Would the tests for chronic intracellular bacterial and viral infections be done by my PC physician, neurologist, or rheumatologist? Is there more information you can give me so that I can request specific tests?"
"I would also be interested in any homeopathic remedies for intracellular infections. I drink 2 oz. of raw apple cider vinegar, as I've read it's good for many thing that ail me. Does it help with this type of infection? Is there something else I can add to my regimen?"
PROFESSOR NICOLSON'S REPLY: Successful treatment of underlying infections is essential in recovery from any chronic illness. I would have to know more about your condition to recommend any specific tests, but in general, the types of infections most commonly found in chronic illnesses are various species of intracellular, cell-wall-deficient bacteria and certain viruses. In some cases, fungal infections may also be a concern. I have sent a copy of my recent review entitled “Chronic infections in neurodegenerative and neurobehavioral diseases” published in Laboratory Medicine, vol. 39, pp. 201-299, 2008. This also mentions chronic infections in fatiguing illnesses, which includes Chronic Fatigue Syndrome and Fibromyalgia Syndrome. Some information on dietary supplements useful in these diseases appears in my publication in the International Journal of Medicine. This can be found on the Institute for Molecular Medicine website, www.immed.org, under Treatment Considerations (document #2 that can be downloaded from the site as a Word RTF document).
"Thanks for taking the time to answer some of our questions. In your response to me, you mentioned having my doctor try to figure out if I have an underlying infection other than EBV. How would she go about doing that? I feel like she doesn't know where else to go? Any ideas? Thanks."
PROFESSOR NICOLSON'S REPLY: She can start with the most commonly found infections in CFS/FMS, which are Mycoplasma spp., Chlamydia pn., Borrelia b., and viruses like HHV6, CMV among other infections. More information can be found on our website, www.immed.org, under Fatiguing Illnesses Research.
"I have been plagued my symptoms since the end of February 2008. I still feel that I haven't been provided any resolution from the doctors I have seen as to what is affecting my body. Without a specific timeline to offer, I'll kind of bulk together my history since February and then present the questions that most concern me at this moment. Symptoms: Chest pain, palpitations, heart flutter, shortness of breath, ringing in ears, headaches (mild), irritated eyes, conjunctivitis, vision change (? right eye mainly), sore neck (mainly right side), neck throbbing, tingling in face, sore jaw, sore throat, sore muscles, hip pain, numbness/tingling in feet/legs and arms/fingers, frequent urination, epidimititis, lack of sex drive, prostate slightly enlarged, low fever (but not very often), night sweats (but not very often), malaise feeling, fatigue (but I don't get it real bad),
swollen lymph nodes (sometimes tender - neck, armpits, groin), back pain, abdominal pain, acid reflux, skin rashes, changes in moles (?), bruising (but not too often) The symptoms vary from week to week and day to day. The cardiac-type symptoms and
lymph nodes are probably what I stress over the most. I would like my eyes to return to normal also so I could start wearing contacts again."
Medical tests: Numerous blood tests (multiple CBC's, thyroid, liver, common autoimmune diseases, HIV, etc), urine samples, chest CT, abdomen CT, chest x-rays, lumbar x-ray, EKG's, stress-echo, heart cath, endoscopy, abdomen ultrasound (x2), testicle ultrasound, thyroid ultrasound, brain MRI. Scheduled tests: Another echo, blood work for enzymes causing blood clots in the lungs, colonoscopy/endoscopy, and possibly another abdomen CT. Known findings: High EBV titers, splenomegaly (unchanged for the last two months), low lymphocytes -- sometimes -- but overall lymphocytes in range, epidimititis, prostate slightly enlarged, low testosterone (but it was back in range last time checked) Overall, I pass most of the tests that have been performed on me.
Supplements / medications:
Microbojen (and then Virogen when I run out) - Jernigan's formula, Anti-Neuro Toxin II - Jernigan's formula, Molybdenum - Jernigan's formula, Inderal (prescription for palpitations), Vitamin D3, Multivitamin, Immune support (from Co-Cure doc), Adrenal
support (from Co-Cure doc), Palpitation remedy and sleep aid (from Co-Cure doc, use when needed), Omega-3, CoQ10, Probiotics, Vitamin C, L-Lysine (supposed to suppress
EBV), Various herbal tinctures from my holistic doc, Camu Camu powder, Echinacea (but only because I caught a cold a week ago)
- The swollen spleen probably worries me the most, especially when you read about the causes of it. I have had pain in that area for two months now that comes and goes and I just assume it's my spleen. EBV can cause this, but would CEBV also cause
it? What about CFS? How worried should I be about it?
- Swollen lymph nodes concern me also. I have three I notice the most: one underneath the jaw at the submandibular gland, one right behind the angle of my jaw below the ear, and one in back of the head right below the skull, all three on the right side. I have had my doctors check them out and no one seems concerned about them. They are not painful to touch and kind of stay the same size, probably the size of a pea although I imagine they are the size of an orange. So should EBV or CFS affected nodes be painful to the touch? I don't have the classic symptoms of a lymphoma, but it does concern me when my spleen is also involved.
- I have been offered another CT scan of my abdomen and I'm thinking about asking for the neck also. In your experiences as an oncologist, should I concern myself with getting another CT scan when I have already had a chest and abdomen CT this year? I'm not sure how else to go about getting my spleen checked out further.
- Can a viral infection affect blood pressure? My BP is usually really good. I was at the supermarket just the other day and tried out the BP machine. To my chagrin, my BP was something like 137/89. Maybe the machine was wrong as I was just at the
doctor's office the day before. Thanks for your time, Derek
PROFESSOR NICOLSON'S REPLY: All of the signs/symptoms that you describe have been found in Mycoplasma, Chlamydia and Borrelia infections and some (or many) in various viral infections. I doubt if your symptoms are being caused by some undiagnosed cancer; however, these infections can promote carcinogenesis and cancer progression. More likely, they are the result of chronic infection(s). For example, Mycoplasma infections cause all of the symptoms that you mention above, and if you would take our signs/symptoms survey ( found at www.immed.org/signsympt.html ), I am sure that you will see some similarities between your signs/symptoms and those found in other patients with chronic infections. The coronary problems are often a mystery to physicians, but these infections can cause endocarditis and myocarditis and can also involve the heart valves, causing serious heart problems. These are usually mild in most patients, involving heart palpitations, skipped beats, irregular beats, tachycardia, and in extreme cases heart pain and other problems that alarm patients. The good news is that this can resolve with successful long-term treatment.
"Hello. Since I am one of those with a myriad of symptoms, I'll have to assume I have some type of systemic intracellular bacterial (and possibly viral) infections to go along with the high EBV titers I do know about. I think I am somewhat unclear as to what doctor might be knowledgeable enough to check for these items. My local doctors are decent, but no one has mentioned the tests that you have. I live in the Denver area, so would I be better suited to find a doctor at a medical campus like CU-Anschutz? Unless we are on death's door, it really is frustrating trying to find a doctor in the know about complicated stuff."
"From a self-help approach, would I be better off trying some antibiotics and then some natural medicine? I've been just going the natural route so far. And are you familiar with Jernigan's supplements, and if so, how do they compare to the Rain Tree brand you mention?"
PROFESSOR NICOLSON'S REPLY: You can always consult with the Road Back Foundation (www.roadback.org). This foundation provides patients with the names of physicians who treat chronic, intracellular infections with antibiotics. For information on some useful supplements for immune enhancement, lipid replacement, etc. you might look up the document #2 under www.immed.org/illness/treatment_considerations.html
I am in the same boat as Ott, Don’t really know what test to ask the doc for or which type of Doc to ask??
PROFESSOR NICOLSON'S REPLY: Interestingly, we generally have the best luck with GPs. They seem to be less prone to always go with the established treatments and ID “experts”.
"Thanks for your answer regarding hiv testing and autoimmune disease. I just wanted to clarify something. Are you saying that having hashimotos and epstein barr could cause a false positive in my test? Also if that were to happen would they just run more tests to come up with a conclusive answer? Is there a high chance of a false positive? Thanks so much."
PROFESSOR NICOLSON'S REPLY: I used an example, I believe, from our Gulf War veterans’ studies where we found that some vets with Mycoplasma fermentans infections tested false-positive for HIV-1. They turned out negative on further testing for HIV-1 genes, indicating that they did not have the HIV-1 virus. It turns out that the Mycoplasma infection that they had contained a portion of one of the HIV-1 genes, the env gene, which encodes a part of the gp120 viral spike glycoprotein. Most HIV-1 antibodies turn out to be against this part of the HIV-1 protein coat—thus resulting in a false-positive test result. Successful treatment of the Mycoplasma fermentans infection resulted in reversion to a HIV-1 antibody negative phenotype. Infections like this have been found in thyroiditis and Hashimoto’s disease.
"aug 07 myelogram went way bad!! needle was inserted too high and hit my spinal cord, instant pain from waist down even in the vaginal area, could not go on with the test, didn't walk for 5 days and couldn't even let a sheet touch my foot, wound up in the ER, had a mri that same day it showed minimal bleeding at the T12 level, i had the terrible spinal fluid headache that lasted almost three days went to the doctor and got pain shots for the headache and when the doctor pushed on the glands in my neck I about passed out with the pain and was told that was the pressure from the fluid. I did get somewhat better with my leg, over about three or four weeks, after that there has been no improvement, I can walk but I do have constant pain in my leg and foot, and my ankle has a stabbing pain, while part of my foot is numb."
March 07 c5 c6 fusion with donor bone and plate and screws.
"I of course did not feel well after the myelogram, but after the cervical surgery, I just have had the worst all over pain, fatigue, can't sleep, shortness of breath, heart racing with little excertion, ears ringing, BAD memory, can't focus,nausea, muscles are so tender I can't stand to put pressure anywere on my body and this is getting worse everyday. Eyes are achy and tired feeling, I have had a few spells were I get dizzy and feel pressure in my head, and when this happens everything looks like it is moving away from me. My abdomen always feel bloated and aches, I do have bladder interstitial cycstitis and enometriosis. and I have psorisis on my scalp. I probably have more symptoms I just can't remember right now."
"I have been diagnosed with fibro by two rheumatologists, they both say this is from the trauma to the cervical region, and that it should get better as my neck feels better, well it has been almost 8 months and my neck and shoulder muscles are as tight as they were after surgery, I just worry they are missing something. I have had alot of blood work and the only thing out of wack was a positive ana with hemangeous pattern. but the other test like Lupus, RA vitamin defieancies, sed rate, folic ?, all were normal."
"Do you think they are missing something?"
"My aunt, my mother sister has MS, and my mothers cousin died from Lupus. My mothers father died of Leukiemia"
"I have read alot about Arachnoid Lesions, could I have developed that after the myelogram? From what I have read it can cause alot of different symptoms. Although it is rare. just feel like I am only getting worse everyday. I need to get back to work, but I know I can't last a fourty hour week, and usually we work alot of overtime which means 16 hour shifts, which I use to be able to work 4- 16 hour shifts in a row, I could work up to 72 hours in 5 days, and now I don't thing I could make it through 3 hours."
"Also after the last couple of years and all I have been through I am depressed which I know does not help my symptoms, but it is hard to find a good side to all of this.
"Also more info if needed, I am 34 years old 5 feet 10 inches 147lbs over the last 3 months I have lost 20lbs.'
"do not smoke, or drink, have two children 15 and 5 and a great husband."
"I would be happy to have any adivse, and thank you for your time."
PROFESSOR NICOLSON'S REPLY: I don’t know if my response will be of any help since I am obviously not a neurologist and since you had obvious Central Nervous System trauma. One of the mysteries of atypical MS, ALS, and other neurodegenerative diseases is the role that chronic infections play in these conditions. Several types of infections I have discussed are found in these conditions (see my review in Laboratory Medicine 2008 mentioned above), and I feel that they play an important neurological role in some but not all neurology patients. If such infections are playing a role, even a co-morbid role, they can be successfully treated using long-term therapies (see references above). In patients like these, such treatment has proven to be very beneficial, and even curative in some patients. In your case, however, there are likely additional problems beyond chronic infections, but I can’t really comment on areas where I do not have expertise.
"Is there any evidence that these pathogen killing treatments lower the risk for cancer ? One thing I find fascinating is that since I started my treatment, I’ve been watching a mole on my left ankle slowly disappear."
"I know that people with CFS have a high risk for thyroid cancer. In your opinion, does this have anything to do with mycoplasma infection ?"
"Also, I was wondering whether or not you think mycoplasmas could alter our DNA ?"
PROFESSOR NICOLSON'S REPLY: Excellent questions. My own studies on breast and ovarian cancer indicate that Mycoplasma infections are quite common in advanced cases, and experimental studies indicate that these infections increase the rate of cancer progression to more malignant pheontypes. I presented (by invitation) at the American Academy of Environmental Medicine that Mycoplasma tests, if positive, can be used to identify women who will die and die more quickly from their breast and ovarian cancers. Those women with the infection were at significantly greater risk of dying with highly progressive cancers.
Independent from my studies are those published by the Armed Forces Institute of Pathology in Washington DC indicating that Mycoplasma fermentans can induce carcinogenesis in cultured cells. Treatment of the cell cultures with the appropriate antibiotics, in this case doxycycline, prevented the Mycoplasma-induced carcinogenesis. The investigators went on to show that genetic mutations occurred more commonly in the Mycoplasma-infected cultures, and oncogenes were induced. They Mycoplasma turned out to be a co-factor or promoter not a direct inducer of carcinogenesis. This probably occurs because the intracellular Mycoplasma stimulates the release of Reactive Oxygen Species that can break and modify DNA.
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