Helpful Threads for Lyme & related Diseases

[Chemar]

Hi to all of our members

 

this thread is primarily for posting links to important topics here at Latitudes/ACN, whether link to a thread (copy and paste the URL in your browsers address and then paste here) or link to a specific post within any thread (if u look top right of the post there is a number eg #1...just click that and the post is brought up so u can copy and paste that URL)

 

Any links for *other* sites, where you feel they would be beneficial to the members, are welcome, but it would be a good idea to really limit those, so that what is truly clear INFO 101 threads by our own members are grouped here, allowing all members, and especially newcomers, to be able to easily find them. We also have to be careful of the perception of "endorsing" research, products, physicians etc. If in doubt as to whether a link here is suitable, just PM me and we will check it for you

 

What we want to do is try to only use this thread to minimize confusion and provide a comprehensive database of info that has primarily been gathered here for anyone searching for answers

 

Please NO DISCUSSION on this thread. Feel free to start a new thread below on any topic here for discussion

 

thanks for your help in putting this valuable resource together

[PacificMama]

HOW TO FIND A LLMD -- a/k/a a lyme literate medical doctor

Lyme and other tick borne diseases are usually a clinical diagnosis -- that is, the diagnosis is not reliant on blood tests because the current blood tests are often inconclusive. Therefore, it's extremely important to find a doctor who is very skilled and experienced in treating tbd's (tick borne diseases). These initial exams are very thorough, often 2-4 hours in lenghth. They include a full review of patient history, lab work, and an extremely extenisve physical exam.

These doctors are often called LLMD's (lyme literate medical doctors). They follow the treatment protocol as outlined by ILADS -- International Lyme and Associated Diseases Society.

***These doctors are VERY SKILLED at treating the multi-infectious patient. Rarely is a patient dealing with simply one infection. Often, there are multiple infections transmitted by ticks. But also, once the immune system is compromised by the initial infection, the patient often becomes susceptible to additional viral and bacterial infections. These doctors know how to peel back the layers of the onion in giving complete treatment. They know the best combination of abx to treat these infections, along with non-abx treatment to add to the mix (supps, naturopathic, etc).

Resources for finding a doctor:

1. Contact ILADS.org and ask for listing of doctors in your area.
http://ilads.org/

2. Go to www.lymnet.org Flash Discussions / Seeking a Doctor
Post a message titled such as "need llmd in Texas". You will receive personal message with names of doctors. This can be very helpful, as they will sometimes give you more detailed information, or have personal insights to offer about the docs.
http://flash.lymenet.../ultimatebb.php

3. Contact the lyme support organization for your state / county / town. They can help you find doctors in your area.
http://www.lymenet.org/SupportGroups/

[PacificMama]

EVALUATING A CHILD FOR TICK BORNE DISEASES

Please see this thread for a link to an excellent article by a pediatric specialist which discusses how a doctor might make a clinical diagnosis for lyme based on symptoms and lab work:

http://www.latitudes.org/forums/index.php?showtopic=10421

[LNN]

A few friends have sent me these links and I thought I'd pass them along...they are somewhat dated, so please realize newer info may be out there. But as a novice, I found this helpful:

 

Explaining Western Blot tests: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

 

WB for Lyme: http://www.anapsid.org/lyme/wb.html

 

Understanding the WB: http://www.lymenet.de/labtests/brenner.htm

Edited March 28, 2011 by LLM

[LNN]

I stumbled across this link

http://www.benbrew.com/lb/lb.html

and found it somewhat helpful in that it's one of the few layman's blogs that cites sources for many statements. It also has a pretty decent list of suggested reading at the bottom.

[sf_mom]

Decent Symptom List For LYME/Co-infections.


LYME DISEASE AND THE CO-INFECTIONS
07/26/2010

Lyme disease is a major health problem in the United States. Since the infective agent, the bacteria known as Borrelia burgdorferi, is so difficult to locate and diagnose using present-day blood tests, it often goes undiagnosed and untreated or improperly treated. Even with practitioners who consider themselves Lyme-Literate Medical Doctors (LLMDs) or Lyme-Aware Medical Practitioners (LAMPs) diagnosing this infection can be very frustrating for several reasons. There are several great books that address the controversy, the politics, the diagnosis, and the treatment, and I will refer you to them for further information. However, two of the most important reasons that proper diagnosis is so difficult is that Borrelia burgdorferi can change its shape and form as a way of protecting itself. These protective forms rarely, if ever, show up in the blood and hide away in other tissues that would require biopsies to identify them. And, second the blood labs used to identify our immune response to these organisms have not been completely refined and, at best are 70% effective and, at worst, only 30% effective.

The majority of healthcare providers, not being Lyme knowledgeable, busy themselves treating the symptoms or possibly even treating the wrong disease. Lyme disease is also known as "The Great Imposter" or "The Great Imitator." It can mimic such conditions as chronic fatigue syndrome, fibromyalgia, autoimmune arthritis, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig's disease), schizophrenia, bipolar disorder, and many different heart and vascular conditions. From the practitioners point of view, it makes it even more difficult to properly diagnose and treat when Lyme disease is very often accompanied by any a number of, just as bad or worse, organisms such as Babesia, Bartonella, Ehrlichia, Cytomegalovirus, Epstein Bar Virus, Herpes Simplex I and II, Human Herpes Virus 6 (HHV 6), Rickettsia, and Mycoplasma.

I have listed below some of the symptoms related to chronic disseminated Lyme disease (Borreliosis), Babesiosis, and Bartonellosis. You will notice that there are many symptoms that overlap with these three infections.

Please circle (O) the bullet if you are presently experiencing this symptom and place and (X) at the bullet if you've experienced this symptom in the past. Next to the (O) or the (X), please rate the symptom on a scale from 1 - 10. Very rarely or few symptoms would be a 1 while often and/or severe would be a 10.

Lyme Disease

• Arthritis-like joint pain and swelling (often migrating or moving from joint to joint)
• "Brain fog" with poor concentration, focus, and/or attention
• Disrupted sleep cycles, resulting in poor quality sleep, too little sleep, difficulty staying asleep, or early awakening
• Back pain
• Light sensitivity and/or blurred vision, increased eye floaters
• Ear symptoms (hearing loss, ringing in the ears, or sensitivity to noise or certain frequencies)
• Chronic and/or severe fatigue with minimal stamina
• Facial paralysis (especially Bell's Palsy)
• Chronic pain and tender points throughout the muscles of the body
• Walking and balance problems
• Headaches
• Impaired muscle coordination
• Impaired reflexes
• Memory loss (especially short-term memory)
• Muscle weakness
• Nerve symptoms (numbness, tingling, burning, vibrating, or shooting)
• Night sweats, clamminess, unexplained fevers, flushing
• Unexplained weight change (loss or gain)
• Unexplained hair loss
• Swollen and/or tender glands
• Sore throat
• Testicular / pelvic pain
• Unexplained menstrual irregularities
• Unexplained breast pain / milk production
• Sexual dysfunction and loss of libido
• Upset stomach with nausea and possibly pain
• Changes in bowel function (constipation or diarrhea)
• Muscle twitching of the face or other muscles
• Increased motion sickness, vertigo, or poor balance
• Tremors
• Confusion, difficulty in thinking
• Difficulty concentrating / reading
• Disorientation (getting lost, going to the wrong places)
• Speech difficulties, vocalization problems, problems writing, word block
• Exaggerated symptoms or worse hangover from alcohol

Over 50% of those with chronic Lyme disease exhibit mental and emotional symptoms including:

• Behavioral disorders including impulsive acts of aggression and violence
• Extreme mood swings between depression and mania
• Chronic depression
• Dementia
• Eating disorders
• Hallucinations
• Mood swings
• Panic attacks
• Extreme fears or phobias
• Schizophrenia
• Personality disorders (radical change in someone's personality)
• Thoughts of suicide
• Irritability

A large percentage of individuals with Lyme infections also exhibit heart and vascular symptoms including:

• Shortness of breath with minimal exertion
• Gasping for air
• Irregular heart rhythms (occasional irregular beats or beating too fast known as tachycardia)
• Chest pains / soreness in the ribs
• Enlarged heart
• Palpitations
• Fainting sensations
• Non-productive cough
• History of heart murmur or valve prolapse
• Two major clues that Lyme is the cause of the above symptoms are: the progressive worsening over time of a multi-system pattern of symptoms, and
• the tendency for these symptoms to wax and wane in a cyclical fashion. That is, every 3 to 6 weeks, it seems that the symptoms get worse for a few days, after which they resume the previous pattern.

Babesiosis

• Chills
• Fatigue and often excessive sleepiness
• Night sweats often drenching and profuse
• Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc)
• Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud
• Depression
• Episodes of breathlessness, "air hunger" and/or cough
• Decreased appetite and/or nausea, perhaps vomiting
• Spleen and/or liver enlargement
• Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate"
• Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
• Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme)
• Dark urine
• Enlarged lymph nodes
• Significant memory changes
• Struggle organizing
• Profound psychiatric illnesses
• Significant fatigue, daytime sleep urgency despite nighttime sleep
• Waves of generalized itching
• Balance problems with dizziness
• Severe chest wall pains
• Random stabbing pains
• Weight loss
• Sensitivity to light
• Sleep in excess of 8 ½ hours per night
• Sore throat with unproductive cough

Bartonellosis

• Fatigue (often with agitation, unlike Lyme disease which is more associated with exhaustion)
• Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
• Headaches, especially frontal (often confused with sinus) or top of head
• Eye symptoms are common and include blurred-vision episodes, red eyes, dry eyes, depth perception problems, retinal problems, and light sensitivity
• Ringling in the ears and sometimes hearing problems (decreased or even increased sensitivity known as hyperacusis)
• Sore throats that are recurring
• Swollen glands, especially neck and under arms
• Anxiety, panic, or worry attacks; others perceive as "very anxious"
• Agitation, irritability, rage, impulsivity, or aggression
• Episodes of confusion and disorientation that are usually transient (and very scary), often can be seizure-like in nature
• Poor sleep (especially difficulty falling asleep), poor quality sleep
• Joint pain and stiffness (often symmetrical, as opposed to Lyme which is often unsymmetrical and often migratory)
• Muscle pains, especially in the calves; may be twitching and cramping also
• Foot pain in the morning involving the heels or soles of the feet (sometimes diagnosed as plantar fasciitis)
• Nerve irritation symptoms that can be described as burning, vibrating, numb, shooting, tingling, and so forth
• Tremors and/or muscle twitching
• Heart palpitations and strange chest pains
• Episodes of breathlessness
• Strange rashes recurring on the body, red stretch marks, peculiar tender lumps and nodules along the sides of legs or arms, and spider veins
• Gut symptoms, especially acid reflux
• Shin bone pain and tenderness
• Fainting
• Bladder pain, irritation, infections
• Genital disorders
• Obesity and body swelling

The list of Borreliosis, Bartonellosis, and Babesiosis symptoms were borrowed from Joseph Burrascano, M.D. (Checklist for Lyme Disease 2008), Kenneth Singleton, M.D., M.P.H. (The Lyme Disease Solution 2008), and James Schaller, M.D. (Bartonella: Diagnosis and Treatment 2008 and The Diagnosis and Treatment of Babesia 2006)

http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/

[Suzan]

Ann Corson's Article on Pediatric Lyme.

 

http://www.publichealthalert.org/pdf/2009_10.pdf

[rowingmom]

The link to the article on Pediatric Lyme is broken. I have found another one:

 

http://www.lymedisease.org/resources/children_pdf/CorsonPediatricLymeTalk.pdf

 

Ann Corson: What Everyone Needs to Know about Pediatric Lyme Disease.

Edited October 17, 2013 by rowingmom

[nyfirefly11]

As someone who went through 13 years of Lyme, I've amassed a number of helpful resources:

 

1. http://www.lymebook.com/ (many books on Lyme and associated infections)

2. http://mpkb.org/ (one protocol)

3. Richard Horowitz's comprehensive book