[CO-CURE] NOTICE: Fibromyalgia, CFS and Lyme Disease

[Guest guest]

Fibromyalgia, CFS and Lyme Disease

 

Professor Sam Donta who gave the talk mentioned below will be speaking at the

 

5th UK Tick Borne Conference on Saturday 24th June 2006 in Sheffield.

http://www.lymediseaseaction.org.uk/index.htm

 

For more information on Lyme borreliosis in the UK and how it may be

associated with ME/CFS please go to http://www.drmyhill.co.uk/article.cfm?id=361

or

http://health.EuroLyme/

 

Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease

http://www.canlyme.com/fibrocfslyme.html

by Bonnie Gorman RN

 

Dr Sam Donta presented a comprehensive, compassionate, cutting-edge lecture

to Mass. CFIDS/FM Association members on November 3rd, 2002. His topic was

" The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment

Issues. "

Dr. Donta is a nationally recognized expert on Lyme disease. He is the of the Lyme Disease Unit at Boston Medical Center and a Professor of

Medicine at BU Medical School. He is a bacteriologist and an infectious disease

specialist, who views CFS and FM from that vantage point. He is also a

consultant to the National Institutes of Health (NIH), and presented at NIH's

scientific meetings on CFS research.

 

What does Lyme disease have to do with CFS and FM you might be asking? Some

people believe that Lyme disease may be one of the causative factors in both

CFS and FM. Others believe that some CFS and FM patients are really

misdiagnosed chronic Lyme disease patients and vice versa. Some believe that

there is

no such thing as chronic Lyme disease, instead these patients actually have CFS

or FM. We asked Dr. Donta to help sort all this out.

 

Parallel Symptom Patterns

 

Dr. Donta presented the symptom lists for chronic Lyme disease, chronic

fatigue syndrome (CFS), fibromyalgia (FM), and Gulf War Illness (GWI). He

pointed

out the similarities between them, and found there were few differences. He

has treated hundreds of patients with these illnesses. He found that CFS and

GWI have identical symptoms, and FM is only distinguished by a positive tender

point exam, that is often positive in CFS and GWI as well. Clinically it is

almost impossible to distinguish or differentiate these illnesses.

 

He has concluded that chronic Lyme disease is remarkably similar to CFS, FM,

and GWI. These multi-symptom disorders have similar symptom patterns

consisting of fatigue and neurocognitive dysfunction, along with numerous other

symptoms that probably relate to altered neurological function. Musculoskeletal

symptoms may be more frequent in FM and in some patients with chronic Lyme than

in

CFS, but the definition of CFS and GWI also includes muscle aches (myalgias)

and joint aches (arthralgias).

 

Lyme Disease Symptoms

 

Flu-like illness, fever, malaise, fatigue, headache, muscle aches (myalgia),

and joint aches (arthralgia), intermittent swelling and pain of one or a few

joints, " bull's-eye " rash, early neurologic manifestations include cognitive

disorders, sleep disturbance, pain, paresthesias (including numbness, tingling,

crawling and itching sensations), as well as cognitive difficulties and mood

changes.

 

The only symptom difference in Lyme disease is the expanding circular rash

with a clearing area and center resembling a " bull's eye. " He pointed out that

Lyme has multiple types of rashes and half of the rashes are not typical, they

may not even include the " bull's eye " rash. They can appear from two day

after the bite, then go on for a week or so. Patients who are infected may not

develop or see the rash, and may not develop any future symptoms. In studies,

only one third of the patients were actually aware of their tick bites.

 

30-50% of acute Lyme disease patients went on to develop chronic Lyme

disease. Additionally, some previously asymptomatic patients may reactivate

their

infection following various stressors such as trauma, surgery, pregnancy,

coexisting illness, antibiotics treatment, or severe psychological stress. The

Lyme

vaccine can also reactivate their infection. Similar triggers such as trauma,

surgery etc. are known to precipitate CFS, FM and GWI as well. This is not a

new phenomenon with infectious diseases. We know infectious diseases

(i.e. TB) will reactivate after illnesses or surgery-- any stressor.

 

Dr. Donta reported on the effects of gender on host susceptibility in Lyme

disease, CFS, FM and other multi-symptom diseases. In all these disorders,

women appear to be more affected than men, usually at about 2:1 ratios. He

noted

that neural cells contain estrogen and progesterone receptors, and that herpes

viruses can utilize estrogen receptors to gain access to the reservoir in the

cell nucleus. Treatment of chronic Lyme disease also seems to be

gender-dependent to some degree, with men generally having more speedy and

complete

recoveries compared to women. He concluded that gender relationships are known

for

a number of infectious diseases, so it would not be surprising that such a

relationship exists for chronic Lyme disease, CFS, FM and other multi-symptom

disorders.

 

Etiology

 

Lyme Disease:

A distinct difference between Lyme disease, CFS and FM is that the origin of

Lyme is clear. Lyme disease is caused by spirochetal bacteria transmitted by

the bite of an infected deer tick. This bacteria is the Borrelia burgdorferi

bacteria. It was identified in the late 1900s in Europe. The US was late to

recognize what Europe had described. Lyme disease was not formally identified

by the CDC until 1977 when arthritis was observed in a cluster of children in

and around Lyme, CT. Since that time Lyme disease has been identified in many

states. The CDC reports that it causes more than

16,000 infections per year in the US. Some researchers feel that the

prevalence is higher than that.

 

CFS and FM:

Dr. Donta feels that Lyme disease is an important cause of CFS and FM. In

addition to Lyme, there are a number of other possible causes. The evidence is

still circumstantial though. Epstein-Barr virus (EBV), the major cause of

infectious mononucleosis, continues to be debated as a cause of CFS. It is

uncertain whether EBV can cause symptoms other than fatigue, such as myalgias

and

arthralgias that are not seen during acute or reactivated EBV infection in

patients who are being immunosuppressed, but it remains possible that EBV could

cause one type of chronic fatigue disorder. There are also other herpes viruses

i.e. HHV6 that are being evaluated as potential culprits.

 

Dr. Donta reported that recently recognized species of Mycoplasma (Mycoplasma

fermentans, Mycoplasma genitalium) have been implicated in CFS, FM and GWI.

These same bacteria have also been implicated as causative agents of rheumatoid

arthritis, based on PCR-DNA evidence in patients with these disorders in

which

50 percent are found to have the DNA of the Mycoplasma in circulating white

blood cells, compared to 5-10 percent of a normal population. Whether the

presence of this DNA represents past exposure or ongoing infection remains to be

resolved. No long-term studies have yet been performed in patients with CFS

and FM to determine whether the finding of Mycoplasma DNA persists over months

or years or whether such patients have any evidence of other infection such as

Lyme disease or infection with Chlamydia species.

 

Central Nervous System Involvement

 

Dr. Donta reported that in Lyme disease, the nervous system seems to be the

primary target for the bacteria causing the disease. Patients with Lyme

disease express many neurologic symptoms such as pain, paresthesias including

numbness, tingling, crawling and itching sensations, as well as cognitive

difficulties and mood changes. Even the joint pains and occasional arthritis

appear to

be neuropathic in origin, as anti-inflammatory agents such as ibuprofen and

other nonsteroidal anti-inflammatory drugs (NSAID) have little if any effect on

the pain. Experimental evidence from animal models also affirm the

localization of B. burgdorferi DNA to the nervous system. Dr. Donta postulates

that the

disease mechanisms could involve inflammatory responses, autoimmune responses

or toxin-associated disruption of neural function. Any inflammatory

responses appear to be weak, and there is no compelling evidence that Lyme

disease is

a result of immunopathologic mechanisms.

 

Commenting on his research, Dr. Donta speculated that if they are correct,

and lyme bacteria is a nerve toxin that interferes with the transmission of the

nerve impulse, then that is all you need to impede the normal flow of

information. There is a lot of cross-talk in the nervous system. This toxin

will

decrease that cross-talk causing delayed responses resulting in cognitive

problems-- the brain fog so commonly described in all these multi-symptom

disorders.

 

Although the disease pathways for other possible causes of CFS and FM have

not been defined, Dr. Donta postulates that the central nervous system would

appear to be a logical target for other pathogens or other disease processes.

These illnesses clearly affect the brain and are bound to cause many

neurological manifestations. Any changes in immunologic function would not

appear to be

sufficient to explain the various symptoms, and are likely to be secondary to

other disease processes.

 

He feels we have been thinking too simplistically about finding whole

organisms replicating in chronic diseases. It is highly likely that there is no

single cause for these illnesses. It's more likely that there are multiple

causes-- different organisms causing the same final set of symptoms.

Researchers

need a better algorithm to study these fatiguing illnesses. We need to be more

inclusive, rather than trying to separate the illnesses. Sometimes in

medicine, if an illness is too complex to study, research interest dwindles. We

have

the technology to do the research, but there hasn't been the will and the

momentum to get it done.

 

Clinical Diagnosis

 

Dr. Donta reiterated that the diagnosis of Lyme disease is primarily based on

clinical grounds, just as with CFS and FM. Once other disorders are ruled

out, the combination of symptoms over months is sufficient to make a presumptive

clinical diagnosis. The diagnosis of Lyme is made easier if a typical rash

is present during the early phase of infection. After that, it is difficult to

distinguish the flu-like illness that can occur a few weeks later, or can

recur over a number of months.

 

Dr. Donta reported that some patients develop severe headaches and an aseptic

 

(infection free) meningitis, which frequently is diagnosed instead as viral

meningitis. If a Bell's palsy occurs (drooping of one side of the face), the

possibility of Lyme disease is likely. If an unprovoked arthritis occurs,

causing swelling of a single joint, especially the knee, but sometimes more than

one joint, then the possibility of Lyme disease should also be given high

consideration.

 

He emphasized that it is the chronic phase of the disease that causes most

problems for physicians and patients, because of the lack of objective signs and

the presence of so many symptoms that it causes some doctors to attribute

psychological reasons for the patients' symptoms. Many patients then receive a

diagnosis of CFS or FM, when they may have underlying chronic Lyme disease as

the cause of their symptoms.

 

Diagnostic Tests

 

Tests for Lyme disease, like tests for other infectious diseases, are often

confusing and circumstantial, and their analysis and interpretation has often

been flawed. In infectious diseases you do a Western blot test to see if you

have a specific reaction. Western blot separates out proteins antigens of an

organism you are looking for. It tells you if a person has been exposed. It

is not a direct measurement of the organism. It is a measurement of whether

the person has antibodies to it. Antibody tests are useful in the early stages

of illness as with other acute infectious illnesses. Once the illness is in a

chronic phase, antibody tests are not useful.

 

Just as viruses change from year to year, we know the Lyme bacteria mutates.

There are a number of organisms that can shift their surface protein in a

matter of hours and that is how they evade detection and patients test negative.

These organisms attach themselves to proteins and conceal themselves--

creating a cloaking mechanism that defies detection. This allows them to get

where

they want to go-- the nervous system. Once they are inside a cell, the immune

system can't see them.

 

That said, Dr. Donta explained that lab tests have been helpful is some

patients with Lyme disease, especially those with arthritis, in whom there are

stronger antibody responses than in those with the chronic, multi-symptom form

of

Lyme. The criteria for the laboratory diagnosis has been patterned after the

arthritic form of the disease, and not the chronic form; as a result, there

are many physicians who are misinformed about the test's lack of value in

chronic Lyme disease. The Lyme Western Blot is helpful when it shows reactions

against specific proteins of B. burgdorferi, but can be negative in 25-30

percent

of patients who otherwise have chronic Lyme disease.

 

PCR-DNA tests for Lyme in blood, urine and spinal fluid are rarely positive,

most likely because the bacteria and their DNA are not present in those body

fluids, but inside nerve cells. Additionally, PCR-DNA studies are very easy to

contaminate.

 

In chronic Lyme disease, the MRI exam of the brain is positive in about 10-20

% of patients. It can show some white spots (unidentified bright objects-

UBO) in various areas, similar to those seen in multiple sclerosis (MS), a

neurologic disease of unknown cause that has some overlapping symptoms with Lyme

disease, CFS and FM, such as the numbness and tingling or paresthesias.

(There are also positive MRI findings in CFS and FM patients as well.)

 

Dr. Donta reported that the brain SPECT scan shows some changes in blood flow

to various parts of the brain, primarily the temporal (cognitive processing)

and frontal (mood) lobes in about 75 percent of patients with chronic Lyme

disease. Patients with CFS have also been reported to have some brain SPECT

scan

changes, frequently involving the occipital lobe. No comparative studies

have been made among patients with chronic Lyme disease, CFS and FM. The

mechanisms underlying these changes remain to be defined, but may be due to a

mild

vasculitis (inflammation of blood vessels) or to a signaling problem within the

nerve network of the brain in those specific areas. It is promising that

these changes are reversible in most patients treated with antibiotics that

appear

to be effective in treating the chronic Lyme disease. These MRI changes are

often slow and may take a year to reverse themselves.

 

These are covert organisms we are dealing with. We need more direct

detection methods for blood, spinal fluid and other body fluids. How do you

detect

organisms in spinal nerve roots or brain? Right now we can't. Nobody is going

to biopsy patients. We need an illness registry so we can do direct detection

studies, particularly of the brain, after death.

 

Treatment: Persistence Pays Off

 

Dr. Donta reported that there are lots of drugs that are active against the

Lyme bacteria in the test tube, but the big question is whether the drug can

get to the bacteria? Lyme bacteria lives in the cells of the nervous system,

perhaps other cells. Dr. Donta has experimented with various intracellular-type

antibiotics. He reviewed his journey through various antibiotics. After

listening to his patients he decided that some antibiotics were better than

others. He then looked at clarithromycin (Biaxin) and azithromycin (Zithromax)

which he found had powerful activity against Lyme bacteria in a test tube.

 

But the antibiotics, by themselves, did not seem to do any good. He found

that you need to change the cellular pH (the degree of acidity or alkalinity),

making it more or less acidic, to maximize the effectiveness of the antibiotic.

This allows the antibiotic to work better i.e. doxycycline seemed to work

better when the pH was higher. Dr. Donta has experimented with various agents

to

adjust pH i.e. amantadine (used to treat flu) and plaquenil (used to treat

malaria). He just submitted proposals to NIH to study various agents to

determine which is most effective.

 

Dr. Donta emphasized that the most important aspect of treatment is that it

must be long-term-- 12-18 months, sometimes 24-36 months. This length is not

unusual in the treatment of infectious diseases i.e. TB. In the first few

months of treatment patients can expect an adverse reaction, symptoms will

increase and you'll feel worse. You need to be able to hang in through this

period,

and allow 3-6 months of a treatment trial to determine if it is working. The

earlier in the disease process that you start on treatment, the more

successful it is. The more chronic the condition the less successful it is, and

you'll

need to treat over a longer period of time. This treatment resulted in

substantial improvement and cures in 80-90% of patients with chronic Lyme

disease.

There are 10-20% who do not respond-- generally those with a strongly

positive Lyme test.

 

Dr. Donta reported that similar results have been found in some patients with

CFS and FM of unknown cause, supporting the hypothesis that some patients

with CFS and FM have an underlying infection responsive to those antibiotics.

Antibiotic trials in CFS and FM have been limited to one month, a duration that

is inadequate to properly evaluate the potential of certain antibiotics to have

a positive effect on the disease. Additional studies, examining both

potential etiologic agents of CFS and FM as well as treatment trials should lead

to a

better understanding of both the cause and treatment of patients with CFS and

FM.

 

Q & A

 

Q: If the Lyme lab tests are inadequate and the symptoms are the same as CFS

and FM, why not just treat all CFS and FM patients with the Lyme protocol?

 

A: You want to be conservative with your medicines. I think we have enough

info now to tell CFS and FM patients to consider going on a 3-6 month trial of

antibiotics and see if you're better. Consider all the other meds you are

already taking that just treat symptoms and not the cause of your illness. They

all have side-effects that can be hazardous. Is it worth it to you to

consider a primary treatment aimed at a cause? There will be resistance from

some

MDs. They need to be educated. Your primary MD will need to consult an LD

specialist re the treatment protocol.

 

Q: Do patients with Lyme disease also have bowel and bladder problems like

interstitial cystitis (IS) and irritable bowel syndrome (IBS)? How are they

affected by treatment?

 

A: Yes, many patients with Lyme have IS and IBS. He was surprised how much

the bowel disorders affected treatment. Tetracycline generally helps the IBS.

Plaquenil can sometimes irritate the bowel.

 

Q: I have received different results for the western blot Lyme test. Why?

 

A: Lyme test results are not reproducible from one lab to the next. You

will get different findings from different labs. The western blot is not a

great

test for Lyme since the responses to Lyme bacteria are already very small

responses.

 

Q: I've been sick for 15 years with CFS and my Lyme test was negative. Is

there any value in treating now?

 

A: If the test was negative but you have the complex of symptoms and there

is no other obvious answer, why not give antibiotics a try.

 

Q: I had the Lyme vaccine then got Lyme symptoms. Why?

 

A: Lyme vaccine was pulled from the market because it was causing reactions

and reactivating a slow onset of Lyme disease.

 

Q: What are the ocular problems in Lyme?

 

A: He sees optic neuritis, similar to that seen in atypical MS patients.

 

Q: Is there any Lyme connection to cutaneous lymphoma?

 

A: He has looked closely for any cancer/ Lyme associations, but has not seen

many.

 

Q: Is there a connection with thyroid problems?

 

A: Thyroid problems are a very common co-existing condition with Lyme, as

they are with CFS.

 

Q: How do I differentiate itching from allergic reactions?

 

A: The same sensory nerve fiber pathways that carry pain carry itching,

numbness, tingling etc. Rash is a common symptom. Rashes could be caused by

medications, especially if they are body-wide. Is it an allergic reaction or

hypersensitivity reaction? Get a complete blood count (CBC) with differential.

Eosinophils will be elevated if allergic reaction. If not, then it's a

hypersensitivity reaction. Treatments are similar.

 

Q: How do we get funding for research to advance these illnesses?

 

A: He stressed how important it is to combine advocacy and research efforts.

Ultimately it will be a political solution. Get active legislatively in DC.

The CFS Coordinating Committee is a very good forum. Lyme does not have

anything like that. Groups need to work together, not fight with each other.

There

should be a coalition of all these groups. We also need to show insurance

companies the benefits of primary treatment to patients, as well as to insurer's

bottom line.

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