The second-most disabling symptom experienced by Lyme
patients is pain. Lyme patients of all kinds of pain. Frequent the pain
confuses physicians because it is migratory and transient, here one day and
somewhere else the next. This is paradigm busting. Lyme patient may describe
the pain in ways which sounds strange. Pain is subjective and very difficult to
describe. Chronic pain is extraordinarily common in our country. I was
surprised to read that is estimated that 40% of the entire country suffers with
some form of chronic pain. Interestingly, the incidence of chronic pain is
extremely variable in other countries ranging from 10% to 50%. Pain, not unlike fatigue, is a brain disorder.
MRI changes with a loss of gray matter are seen patients with chronic pain.
These changes reverse when the pain resolves. In standard medical literature it
is said that chronic pain rarely resolves. That has not been my experience.
The question is: why does Lyme hurt.
For a start, Lyme spirochetes have a unique ability to
infect nearly every tissue in the body. The germ is poly-tropic (can go
anywhere) and patients are pan-symptomatic (experience multiple, seemingly
unrelated symptoms found in many publications).
Pain comes from skin, peripheral nerves, central nerves,
viscera and organs, tendons, ligaments, muscles, joints, head and simply from
the brain itself. Generally the cause is inflammation, directly from invasion
of the involved tissue or from an autoimmune processes. Pain is frequently associated
with structural/physical damage to the involved tissue. The damage may only be seen with nuanced studies of which the general medical community is ill informed.
Traditionally, Lyme has been seen in association with joint
pain and arthritis, meningitis and carditis and several others.
Mainstream medicine has failed to recognize the connection between numerous chronic pain syndromes and Lyme disease. Certain coinfection syndromes
are associated with specific pain. For example Bartonella as well known to
cause heel and shin pain. This will but not be my focus here.
Patient do have variable tolerance to pain for variety of reasons.
This will not be my focus as well.
Physicians as a whole are poorly informed about pain and
chronic pain and tend to be dismissive of patients complaining of pain. When
brought up in the context of Lyme disease pain complaints are received with even
less credence.
Many Lyme patients are diagnosed with fibromyalgia. There has
been a long-standing debate amongst physicians. Is "fibro" a real disease or simply
a garbage can diagnosis? The disease is real. Medical research shows there are
path-anatomical changes in the muscles and small nerve fibers in these
patients. The physical examination is patients is clearly abnormal. I consider
fibromyalgia a syndrome, not a disease. Lyme and associated infections may be the
root cause in many cases.
Chronic pain patients are frequently told they look fine, not showing any signs of pain. This is how chronic pain
patients appear. Pain which is unrelenting, day in and day out is torturous and
unbearable and yet patients may look "fine."
Physicians should give their patients the benefit of the doubt and
assume their patients are telling the truth unless proven otherwise; it is only
a small percentage patients who inappropriately seek drugs. A pain management
specialist told me that typically 20% of patients seen in his practice are drug
seekers not suffering with pain and that this breakdown is typical for other
pain practices. Why then, do physicians think the 80% of patients suffering
with pain should be made to suffer an unbearable fate because of the 20%?
Please treat your pain. Chronic pain has adverse effects on sleep, mood,
neuroendocrine function, functional capacity and impedes the overall healing
process. Some Lyme patients live in chronic pain refusing to take opioids because
they have the incorrect notion that use of opioids will suppress immune
function and their ability to heal. This is not true.
Let's talk about headaches. Neurologist
infuriate me. They are married to the notion that headaches respond to standard drugs like: Imitrex and Topomax; I’m sorry, but the brain/head forgot to read the textbook. Neurologist and headache specialists are obsessed with the idea that
migraine/chronic headache patients will respond to their standard drugs.
Narcotics are not prescribed because the patient will become addicted or abuse
the drugs. Desperate patients go to the emergency room are almost universally looked at suspiciously. These poor souls are
seeking a modicum of relief from pain that makes the sufferer want to tear off his/her head or commit suicide. This no-narcotic sort of thinking is outdated and
criminal as far as I’m concerned. In the early 80s I was taught that Narcotics
were only to be given to patients with terminal cancer because of addiction. In
the 90s the pendulum swung the other way. Physicians were instructed to
compassionately treat pain; clinical studies showed that few patients developed
addiction. The pendulum has swung back the other way because the DEA is
obsessed with OxyContin abuse and able to look at the big picture. This
obsession has led to a sudden increase in deaths from relatively inexpensive,
apparently no longer stigmatized heroin.
New onset daily migraines and new onset chronic daily
headaches are new phenomena. Lyme, Babesia and Bartonella are frequent
contributors. Any treatment that works is OK. Therapies such as chiropractic manipulation, botox,
HBOT, and possibly oxytocin can be tried. Ultimately, opioids may
be the only thing that works. Patients should be their own advocates and do whatever is necessary to attain a quality of life higher than zero.If their pain doctor does not get it find another who will. They exist.
Lyme arthritis can be challenging. Patient seeking my
attention usually suffer with long-standing, intractable joint pain. Many of
these patients only improve with very aggressive therapy. Borrelia spirochetes
are anaerobic and drill shaped; the bacteria utilize these attributes to invade
deeply into synovial tissues and cartilage. Joint pain can be the only complaint making these patients different from typical, poly-symptomatic patients, and therefore,
physicians, including like-minded colleagues, avoid intravenous therapies. However,
intravenous antibiotics may be the only treatment that works. Long courses
sometimes five months or more of intravenous antibiotic therapy is required.
Oral drugs lack the power to penetrate cartilage which is largely avascular. When
hard earned remissions occur, maintenance oral therapies are necessary. I have found
that the combination of doxycycline and Tindamax is usually effective. I
recently saw a refugee from a rheumatologist who was misdiagnosed and pumped her
with a panoply of biological agents which caused a severe exacerbation of joint
pain. Lyme arthritis may have different faces at times appearing much like
rheumatoid arthritis and other forms of arthritis. Plaquenil and sulfasalazine,
anti-inflammatory, immune modulating drugs may occasionally be helpful and are
safe to use. Steroids should generally be avoided.
Lyme arthritis can look like
and act like osteoarthritis. When all the cartilage has been chomped through by
spirochetes, bone on bone is all that is left. Surgery may be needed. Hyperbaric
oxygen therapy can work wonderfully for some patients. Patients may try low dose naltrexone but in my experiences
it rarely works for chronic pain. Sometimes, drugs like Cymbalta and Lyrica are effective. Medical marijuana, available in some jurisdictions, is a new player. For
some it is very effective. Alternatively, synthetic THC, Marinol can be and
work well. I saw patient today suffer with Lyme arthritis was has been taking liposomal
doxycycline. He feels it has been somewhat effective. In my clinical
practice I have not seen much difference between standard doxycycline and
liposomal doxycycline. In theory, liposomes avoid destruction by gastric
secretions, have better absorption and have higher bioavailability. In
addition, the chemistry of liposomes allows them to bind directly with the cell
wall or membrane of bacteria significantly enhancing the efficacy of the drug.
If narcotics are the only thing that works, take them.
Neuropathy pain is extremely common amongst Lyme patients. I
have found the vast majority of my patients suffering with chronic Lyme
show some evidence of peripheral neuropathy, damage to small sensory and motor nerves.
In most cases the EMG/NCV is negative. Frequently, small fiber neuropathy may
be demonstrated from skin/sweat gland biopsies. A physical examination can be
revealing, especially testing sensation in the lower extremities with a tuning
fork. Nerve pain can be excrutiating. Patients with severe neuropathy syndromes can respond dramatically with the
use of IViG.
Different types of pain of various causes may respond better
to one therapy or another. For example, a nonsteroidal anti-inflammatory drug
may be helpful for joint pain but provide no relief for nerve pain. The
opposite is true for drugs like, Elavil, Lyrica or Neurontin. Ultimately, every
effort should be made to control pain using appropriate medications and
ancillary therapies. For the vast majority patients pain can be controlled and
should be controlled. This is a necessary part of treatment.
6 comments:
I have always found aspirin helpful and think it could be the anti inflammatory affect. Baby aspirin makes no obvious difference but 300mg once a day helps enormously. I have taken it with antibiotics over long periods not currently as so much better.
In the past aspirin has helped improve muscle weakness within an hour of taking it making climbing stairs easier, reduced restless legs, helped brain fog and helped better quality of sleep for me.
When using aspirin in the past before Lyme for pain relief it would work within about 20 mins but in respect of Lyme it seems to take about an hour but the benefits last many hours.
I have always taken dispersible with plenty water and food to protect the stomach and at my worst took it for two years as well as a combination of antibiotics.
Do you have any comments about the use of aspirin do you know if it is known for helping Lyme patients and what process it could be working ie vascular so blood thinning, anti inflammatory or other.
Have you ever prescribed amitryptiline or nortryiptiline? What has your success been with those?
Thank you for your enlightened discussion. I have been on opioids for chronic pain (I now presume from Lyme) for about 20 years. And I am a physician (with a fellowship in pain management..) So I have seen the pendulum swing from the push for compassionate treatment back to the current anti-opioid hysteria. "There's no proof it works in chronic pain!" they cry. The proof is in the patient... Chronic pain patients are facing a tough time in the next several years, until the pendulum swings again, I'm afraid. You hit the nail on the head with my best argument in favor of opioid treatment: why punish the vast majority who suffer needlessly when denied these helpful and, generally quite safe, medications, because of a minority who will find some way to obtain them in any case? As restrictions on prescription opioids increase, the use of illegal opioids will also increase. It is a zero sum game. Drug seekers will find drugs. Meanwhile, please stop torturing those who really benefit from pain medications!
Thank you for this post. The only thing that ever helped my Lyme and co headaches (diagnosed as new daily persistant headache) was Fioricet, but my doctors won't give it to me anymore. It's rough.
Life is a battle, if you don't know how to defend yourself then you'll end up being a loser.
So, better take any challenges as your stepping stone to become a better person. Have fun,
explore and make a lot of memories.
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