Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi-
I am trying to get some answers for a friend who has been fighting chronic fatigue for almost 7 years..very suppressed adrenals, back pain, neck pain, TMJ, ulceritive colitis...He grew up on a horsefarm in New Jersey but did not become chronically fatigued until years later after a stressful job and a car accident. He has never had testing for lyme or any of the co-infections and is convinced his problem is CFS and gut-related. I keep trying to gently persuade him to look into lyme and its co-infections because I've been shocked by the number of people who have tick-borne illnesses who have been around horses. (Also, he lived in New Jersey)...Does this sound similar to anyone's story on this board?
Thanks so much, A.M.
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
I think people with horses are at a very high risk of Lyme disease. Any time that horse walks through tall grasses, where do the ticks go? Straight UP!
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Oh my goodness. I am a chronic lurker but had to respond. We have horses. In the last year, both my children have been CDC positive for Lyme, I am being treated for babesia/bart, my husband had babesia. All the horses are healthy, though I think it has to do with a hobby that keeps you outside alot, in less-than-manicured terrain. I know MANY more horsepeople with TBD than in my general circle of aquaintances.
Posts: 520 | From Maryland | Registered: Jan 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I grew up with horses in VA, and our stories sound similar. My LLMD thinks I was infected as a child. Had some bouts of "mono" type illnesses that would knock me out for months at a time - but always recovered and led a very active life.
Finally, years later, a traumatic event & multiple surgeries started a massive downhill slide. It was too much for my immune system to handle, I think.
I got diagnosed with CFS, fibromyalgia, MS - you name it - over a period of years. It took 5 years for me to get to a doc that knew enough to look further into the matter than an Elisa test and a Western Blot through Quest. She figured out I had co-infections, and it took getting to an LLMD to get diagnosed with Lyme (I tested positive by PCR, but Lyme testing is unreliable and is often a clinical diagnosis).
I hope your friend will look into this further. Lyme is one of the causes of CFS, I believe. Hopefully your friend will keep looking to find what could be at the root of his CFS, rather than stopping with a diagnosis that will only help him to get treatment for symptoms and not the root of the problem.
Take care, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
These are fantastic responses. Yes, Cactus, your story sounds VERY similar to his. He, too, had bouts of mono as a child. I'm sure you've read all of the articles regarding equine babesiosis. My friend is about to visit one of Dr. Teitelbaum's CFS clinics and I HOPE they test for co-infections. I believe he probably has babesia.
Cactus, what co-infections were you diagnosed with and what were/are your symptoms?
Thanks so much..
Posts: 1155 | From Southeast | Registered: Oct 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Yep. Horses are what I luvs2ride. Although I am quite certain I never had lyme disease until Nov 1995.
I recovered from that and enjoyed my life until Aug 05 when it struck again. I could have been reinfected, but I also was in the midst of some tremendous stress when it hit.
I think, just like the chicken pox virus, we carry the bacteria with us (as do many people not yet sick) and it remains pretty much dormant as long as our immune system is strong. Knock that down and lots of things take over.
Right before this bout of lyme, I suffered shingles and had a nasty round with H. Pylori. I was going down, I just didn't know it.
Doing much better now and still riding. It is my destressor. There is no way I can avoid the tick, flea, mosquito, horsefly and any other insect they have found to carry lyme. I am committed to keeping healthy and as stress free as possible.
When treatment is done, I will be looking for ways to keep the bugs from returning.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Bugg, yes I've seen some of the articles on equine babs - that's what led to my finally getting diagnosed! One of my local docs actually consulted with a vet (!) about what to test for and how to treat till I could get in to my LLMD. Crazy.
My symptoms were all on Lymetoo's list. Lots of pain - head, neck and back mostly. Migraines. Abdominal pain. GI issues. Numbness/tingling in hands and feet that progressed to burning. Fatigue. Many more.
I tested pos for:
Lyme (by PCR and Igenex WB) Erlichia Babesia Microti Babesia WA-1 Colorado Tick Fever Salmonella (chronic, 5 diff strains) Legionella EBV, HHV-6 and a ton of other viruses Some other stuff, too, but can't remember it all
Was clinically diagnosed w/ bartonella based on rashes and response to treatment.
LLMD doesn't think I got this all from one bite - it seems more likely that I was infected as a kid & my immune system was handling it. Kept picking up more bugs throughout many travels, and finally with trauma, it was all too much to keep in check. Maybe something like that has happened with your friend?
I hope your friend finds answers that will help him soon. If you need anything, you are welcome to pm me, too.
Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Bugg,
Yep, I spent weekends and summers on my grandmother's farm in very southern Illinois. Four horses and more cows than I could count. Lots of horse fly bites and a tick every few days.
Even if they were discovered to be part of this puzzle, though, my happiest times were with the horses. A Carly Simon song just popped into my head: "It was so easy then . . . . "
cactus: thanks for the note on equine babs.
This does go to show that we need to help the entire planet heal. It's such a circle and just one big neighborhood.
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Had a horse growing up till 1996. Dx'd MS in 1988. First MS symptom - Bell's Palsy.
Did fine (no MS drugs at all since doubted that idea) Arches popped and walked/stood on inside ankles.
Found LLMD in Aug. 2003, positive Lyme WB test results in Sept. 2003. No other doc EVER did a WB on me.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
If you spend any time out in nature, your are in danger. I had horses, but the time I ended up with 20-25 in my hair was when out riding dirt bikes. Apparently the place we sat down to rest was loaded with them.
[ 08. November 2007, 05:16 PM: Message edited by: Jellybelly ]
Posts: 1251 | From california | Registered: Apr 2005
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Also, here is what the Fibromyalgia and Fatigue C Center has to say about Lyme testing, which they recommend.
Fibromyalgia & Fatigue Center, Inc.
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.
Posts: 1251 | From california | Registered: Apr 2005
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