I can't find specific stories to support my suggestion to a friend I believe has Lyme instead of CFS and Epstein Barr. I looked in the newbie links but all of the CFS ones I went to were no longer there.
Articles would really help and personal accounts that are limited to CFS, not CFS and FM. I've noticed people tend to shy away from any info that says both.
They truly believe if they don't have all symptoms listed, they don't have lyme.
Thanks in advance! Curley
Posts: 982 | From Florida | Registered: Feb 2002
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I'm not sure what you are looking for. I'll tell you my daughter's story.
She was very ill and fatigued. Her body was in pain. The blood test her primary care physician gave her showed an elevated autoimmune titer.
We were referred to a rheumatologist, who then tested her for all the autoimmune disease such as RA, MS, Lupus, which were all negative. Fortunately, he also tested for the viruses such as epstein barre, parvovirus and mycoplasma pneumonia.
All of the viruses and mycoplasma were positive. PCP said two weeks of doxycycline would take care of it, and the rest would go away on their own.
As the year progressed, my daughter's health declined. Now all body systems were being affected. We saw neurologists, gastro, allergy and asthma, gynocologists, and more rheumatologists.
She was finally given the blanket diagnosis of fibromyalgia/CFS. I was not satisfied with this diagnosis and started doing internet research.
Through a series of referrals over the internet, I was directed to a doctor who treats "unusual infections".
After blood work, it was revealed my daughter was infected with two strains of bartonella, then a year later, discovered there was also babesia.
Her autoimmune titers have started coming down, and are bordering on negative. Other body system problems are also starting to return to normal. The 80 pounds mysteriously gained has now reduced by 50%.
I will NEVER accept the garbage pail diagnosis of fibromyalgia again.
I'm glad your friend has someone like you to speak to him.
It's quite possible that everyone on this board was given the diagnosis of fibromyalgia. Have you entered it in the search?
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I was mis-diagnosised with CFIDS first 7 years of my illness. In retrospect this mis-diagnosis cost me 20 years of suffering with lyme & alot of money spent in the wrong direction
Gerrrrrrr...makes me sooooooooooo mad. I could have had a wonderful life had the doctors diagnosised & treated me properly in the beginning.
Oh well. Thats my story .I will try to find some articles for you today to give to your friend. Lyme is called "The great immatator" . I found the following article under "chronic fatigue syndrome"
I do so hope your friend can get the help she/he needs. Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
i'll copy my story from somewhere else to here; no use duplicating my efforts!
July 12, 2004, I was correctly dx with late stage, CHRONIC lyme disease after being misdx for 34 yrs. after a case of mono, and the list started with CFS, fibro, and goes on with 30 diagnosis/symptoms!
I tested with a blood test, WESTERN BLOT IGM & IGG, which needs to be tested for ALL 16 protein bands...all strains of lyme disease! In USA, only 3 diagnostic labs do this testing: IGeneX, MD, and Bowen Labs. 2004.
I was diagnosed with: diabetes 2 in 1-04; chronic lyme disease 7-12-04; and sleep apnea (I stop breathing when sleeping) and restless leg syndrome 12-04.....4 life-threatening illnesses and now heart problems showing up.
"You look perfectly healthy...not sick'' said one of my family members. Oh what they don't know and can NOT feel of the pain and fatigue inside me! If I were in a wheelchair, used crutches, a walker, or a cane. I would have a visible disability. ``It's all in her head''.
Only those of you going through this know how much pain and anger you've caused us with your thoughtless comment on our ``invisible'' illnesses! We don't want sympathy; we only want your support, compassion, and someone to talk to when our ``flare-ups'' are bad.
I have been blessed with my supporter/ husband, Jack, and close friends. I have had chronic fatigue syndrome, CFS, since age 21, Feb. 1970, after getting mononucleosis; and still have 34 years later.
I was diagnosed with fibromyalgia syndrome, FMS , 11 years ago but have had at least 30 years. I then begin having many other symptoms: A person has fibromyalgia if they have at least 11 of 18 specific tender point painful sites. I have all 18 of 18 tender points. My pain never goes away! I use a heating pad and/or frozen cold packs on my neck, shoulders, lower back, thigh, and knee helping to numb pain.
Do you have any idea what it is like to go to bed night after night, year after year, and get up just as TIRED as when you went to bed? Plus I wake up frequently urinating 4-8 times. I can't reach level 4 sleep healing our injuries and rejuvenating our systems. I have sound-proofed our bedroom to eliminate noise from the neighbor's driveways, slamming of the car doors, racing engines, dogs barking, piano playing, and bouncing of all balls.
I was clinically diagnosed with major depression and anxiety, and put on antidepressant that helped my chemical imbalance causing temper flare-ups, and causing me to gain 25 lbs, which caused my type 2 diabetes sooner.
Difficulty concentrating or performing simple mental tasks. I now point at things since I can't think of words, abdominal pain, bloating, and alternating constipation/diarrhea (irritable bowel syndrome) as well as irritable bladder syndrome causing urinary urgency/frequency; super sensitivity to light (reflections/glare) and to sound (loud mufflers).
Finally after 34 years, I have discovered it was my LYME disease causing extreme PAIN sensitivity to lights/glare/reflection and to sounds/noise! I have seen 40-50 drs. to get a correct diagnosis!
SS Disability doesn't acknowledge LYME/FMS/CFS as work disabilities and fight to DENY each claim although our treating specialists all state, ``patient is unable to do substantial work now and in the foreseeable future''. July 1, 2005, I was finally approved on my 2nd SSDI claim after 5 years of hell.
STRANGE MISDIAGNOSIS:
Paralyzed vocal cords;
You have lupus, and walk-in MD walked out the door without explaining what it was NOR did he give me a brochure discussing what lupus was. I was diagnosed 3 different times for this, but never treated.
This story isn't done, but copying to:
www.MDJUNCTION.com new LYME forum site!!
as a intro to them about me! BettyG 3-20-07
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posted
I received a CFIDS diagnosis in 1996 after becoming ill with a flulike infection.
I had no joint problems or severe arthritis , just sick all over flu feeling - 10 years .
In 2005 I went to a Fibro Fatigue Center and received an Igenex lyme test , which was positive. The original tests I was given are known to be inaccurate ( elisa) .
There are MANY MANY people at immunesupport site who were CFIDS diagnosed , and then tested positive for lyme VIA IGENEX.
Any person ( on the earth) who has been diagnosed with CFIDS should strongly consider the possibility of lyme and RUN to get an Igenex test ! I think a large percentage of CFIDS folk are lyme victims .
Even if a person has no memory of a tickbite , lyme is a possibility because of transmission via mosquitoes and flies .
I was in shock when I found I had lyme. But when I read the lit , and remembered tick bites , I knew I had found the real problem.
The labwork of a CFIDS patient and a lyme patient are " virtually indistinguishable "
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Misdiagnosed with CFS for 15 years.
Many doctors believe CFS and FM are the same thing though. One of my later docs during that period did. Fibromyalgia only means "sore muscles", which many of us have and those diagnosed with CFS.......It's really just semantics I think.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Misdiagnosed with first FM, then Epstein barr, and then CFS.....Took me 8 years to get Lyme diagnosis.
Elaine
Posts: 261 | From Herx-ville!! | Registered: Aug 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Had to leave work in September 2001 due to extreme fatigue, intense pain, and rapidly deteriorating health. Diagnosed in December 2001 with CFS and FMS, along with NMH. Already had been dealing with multinodular goiter for 15 years at that point.
Diagnosed with Chronic Lyme, dating back to my childhood (40+ years) in April 2006. Been on abx treatment for almost one year now and have seen noticeable improvement, but still a very long way to go, and I still have days, and weeks that I am almost bedridden.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
THANK YOU everyone for your help. I will send this link to my friend. There is nothing more powerful than the words of those who have been thru it.
I too had most of the sx on the list of 37 sx. It is so true that everyone saying I looked became almost an evil phrase. I too just needed a little understanding and that would have been help. My husband stood by me for years and supported me without question. He deserves an award considering the lyme rage and bi-polar symptoms I had not to mention the sleeping and waking up more tired.
This is really helpful.
THANKS!! Curley
Posts: 982 | From Florida | Registered: Feb 2002
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posted
This was posted on lymenet before but I thought it was worth repeating for this topic. Al
Science Daily
Source: Stanford University Medical Center Date: January 9, 2007
New Therapy For Chronic Fatigue Syndrome To Be Tested
Science Daily -- A preliminary study suggests there may be hope in the offing for some sufferers of chronic fatigue syndrome with a new therapy being tested by researchers at the Stanford University School of Medicine.
Jos� Montoya, MD, associate professor of medicine (infectious diseases), and postdoctoral scholar Andreas Kogelnik, MD, PhD, have used the drug valganciclovir - an antiviral often used in treating diseases caused by human herpes viruses - to treat a small number of CFS patients.
The researchers said they treated 25 patients during the last three years, 21 of whom responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months. The first patient has now been off the drug for almost three years and has had no relapses. A paper describing the first dozen patients Montoya and Kogelnik treated with the drug was published in the December issue of Journal of Clinical Virology.
"This study is small and preliminary, but potentially very important," said Anthony Komaroff, MD, professor of medicine at Harvard Medical School, who was not involved in the study. "If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness."
Montoya has received a $1.3 million grant from Roche Pharmaceutical, which manufactures the drug under the brand name Valcyte, to conduct a randomized, placebo-controlled, double-blind study set to begin this quarter at Stanford. The study will assess the effectiveness of the drug in treating a subset of CFS patients.
Montoya is speaking about his efforts at the biannual meeting of the International Association for Chronic Fatigue Syndrome in Fort Lauderdale on Jan. 11 and 12.
Chronic fatigue syndrome has baffled doctors and researchers for decades, because aside from debilitating fatigue, it lacks consistent symptoms. Although many genetic, infectious, psychiatric and environmental factors have been proposed as possible causes, none has been nailed down. It was often derided as "yuppie flu," since it seemed to occur frequently in young professionals, though the Centers for Disease Control and Prevention says it's most common in the middle-aged. But to those suffering from it, CFS is all too real and its effects are devastating, reducing once-vigorous individuals to the ranks of the bedridden, with an all-encompassing, painful and sleep-depriving fatigue.
More than 1 million Americans suffer from the disorder, according to the CDC. The disease often begins with what appears to be routine flulike symptoms, but then fails to subside completely - resulting in chronic, waxing and waning debilitation for years.
Valganciclovir is normally used against diseases caused by viruses in the herpes family, including cytomegalovirus, Epstein-Barr virus and human herpes virus-6. These diseases usually affect patients whose immune systems are severely weakened, such as transplant and cancer patients. Montoya, who had used the drug in treating such patients for years, decided to try using it on a CFS patient who came to him in early 2004 with extremely high levels of antibodies for three of the herpes family viruses in her blood. At the time, she had been suffering from CFS for five years.
When a virus infects someone, the levels of antibodies cranked out by the immune system in response typically increase until the virus is overcome, then slowly diminish over time. But Montoya's patient had persistently high antibodies for the three viruses. In addition, the lymph nodes in her neck were significantly enlarged, some up to eight times their normal size, suggesting her immune system was fighting some kind of infection, even though a comprehensive evaluation had failed to point to any infectious cause.
Concerned about the unusual elevations in antibody levels as well as the swelling of her lymph nodes, Montoya decided to prescribe valganciclovir. "I thought by giving an antiviral that was effective against herpes viruses for a relatively long period of time, perhaps we could impact somehow the inflammation that she had in her lymph nodes," said Montoya.
Within four weeks, the patient's lymph nodes began shrinking. Six weeks later she phoned Montoya from her home in South America, describing how she was now exercising, bicycling and going back to work at the company she ran before her illness. "We were really shocked by this," recalled Montoya.
Of the two dozen patients Montoya and Kogelnik have since treated, the 20 that responded all had developed CFS after an initial flulike illness, while the non-responders had suffered no initial flu.
Some of the patients take the drug for more than six months, such as Michael Manson, whose battle with CFS has lasted more than 18 years. The former triathlete was stricken with a viral infection a year after his marriage. After trying unsuccessfully to overcome what he thought were lingering effects of the flu, he had no choice but to drastically curtail all his activities and eventually stop working.
During his longest period of extreme fatigue, 13 1/2 weeks, Manson said, "My wife literally thought I was passing away. I could hear the emotion in her voice as she tried to wake me, but I couldn't wake up to console her. That was just maddening."
Now in his seventh month of treatment, Manson is able to go backpacking with his children with no ill after-effects. Prior to starting the treatment, Manson's three children, ages 9 to 14, had never seen him healthy.
Montoya and Kogelnik emphasized that even if their new clinical trial validates the use of valganciclovir in treating some CFS patients, the drug may not be effective in all cases. In fact, the trial will assess the effectiveness of the medication among a specific subset of CFS patients; namely, those who have viral- induced dysfunction of the central nervous system.
"This could be a solution for a subset of patients, but that subset could be quite large," said Kristin Loomis, executive director of the HHV-6 Foundation, which has helped fund a significant portion of the preparatory work for the clinical trial. "These viruses have been suspected in CFS for decades, but researchers couldn't prove it because they are so difficult to detect in the blood. If Montoya's results are confirmed, he will have made a real breakthrough."
"What is desperately needed is the completion of the randomized, double-blind, placebo-controlled clinical trial that we are about to embark on," Montoya said.
Note: This story has been adapted from a news release issued by Stanford University Medical Center.
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i was diagnosed with the following blanket/idiopathic disorders before finally testing positive for lyme via igenex and finding a lyme literate doctor:
posted
I had severe abdominal pain, trips to the ER, a month of being nearly unable to eat or drink, and lost 20 lbs. Followed by tests, and finally a diagnosis requiring me to have my gall bladder removed.
The surgeon said that I would be back to all my normal activities within 3 weeks. That never happened.
My regular naturopath then diagnosed me with CFIDS. I went from doctor to doctor, trying new recommendations, new supplements, etc. Nothing helped for any length of time. But I was determined to find a way back to health.
As Annxyz did, I too found the Fibromyalgia and Fatigue Center, and eventually the right doctor who thought I should have the Igenex Western Blot. That's how I found out I have Lyme Disease. It took over 5 years of my life, unable to work or live the life I had imagined at the time.
Now, I've been in treatment for about 15 months. I'm seeing improvements, but certainly have a long way to go.
If anyone has CFIDS or FM, I urge them to see a LLMD and get checked for Lyme. The earlier doctors I had seen were all good people, trying to help me get well the best they knew how. They were just illerate about Lyme.
I was also found to have other infections such as candida, mycoplasma, echovirus and very low hormone levels, and low NK cells. I'm sure that my poorly functioning immune system from Lyme had an impact on my getting breast cancer four years ago.
Lyme is nothing to ignore.
Best wishes to your friend, Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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posted
Lyme Disease and Its Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue
10-03-2005
By Kent Holtorf, MD (Reprinted with author's permission)
Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called "the great imitators" because they can mimic virtually any disease, which often leads to misdiagnosis.
Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.
Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching.
It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer's disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.
Patients with chronic Lyme disease often complain of 'strange' or 'weird' symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.
Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease. The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation.
The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test.
This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).
If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.
There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive.
As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).
Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst.
Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease. Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit.
The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy.
A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment.
This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).
To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.
(from the immunesupport.com library)
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