Treatment | Madison Area Lyme Support Group

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Lyme or Arthritis?

http://jbjs.org/content/98/9/721 A new study in the May 4 issue of the Journal of Bone and Joint Surgery reviewed the records of 189 patients under age 18 who presented to Children’s Hospital of Philadelphia (CHOP) with excess fluid in the knee between 2005 and 2013. Of these patients, 23 had culture-positive septic arthritis; 26, culture-negative septic arthritis; and 140, Lyme disease or 74% of the total children included.

It also identified four symptoms that are predictive of septic arthritis, which is considered a medical emergency requiring surgical irrigation (flushing) and drainage to prevent rapid and irreversible destruction of the cartilage surrounding the knee.

Knee pain with a short range of motion
A C-reactive protein (CRP test; used to measure inflammation) of >4.0 mg/L
Fever
Age younger than 2

“The probability of septic arthritis with any one factor present was 18 percent compared to 100 percent will all four factors present,” said study author Wudbhav N. Sankar, MD, an orthopaedic surgeon at Children’s Hospital of Philadelphia. “Our study offers a useful prediction algorithm to help distinguish septic arthritis from a knee effusion caused by Lyme disease in children.”

Lyme disease, on the other other-hand, is treated with antibiotics. In addition to knee swelling and pain, both conditions may cause a fever, swelling of other joints, irritability and an inability to bear weight on the affected extremity. Common laboratory tests to measure inflammation, as well as white blood cell counts, also may be elevated.

It would be prudent to take the child through various checklists as MSIDS (multi systemic infectious disease syndrome or Lyme with friends) is a clinical diagnosis as the tests often come back negative for Lyme (borrelia) as well as the various coinfections; however, children are often not perceptive about what they are feeling physically in their body and/or they have a difficult time relaying verbally. This is where parents need to be their child’s advocate, do the reading and understand the concepts, and fight for your child. A person’s chances are always better if MSIDS is caught early.

https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf

symptom-check-list-chart-dr-burrascano-12

https://madisonarealymesupportgroup.com/wp-content/uploads/2012/09/babesia20checklist-20dr-20schaller.pdf

https://madisonarealymesupportgroup.com/wp-content/uploads/2012/09/bartonella20checklist-20dr-20schaller.pdf

For an excellent article on LD in children: https://www.lymedisease.org/lyme-basics/lyme-disease/children/

Also, a book about when your child has LD: http://www.lymeliteratepress.com

http://www.amazon.com/When-Your-Child-Lyme-Disease/dp/0996224300/ref=la_B001KC7OVU_1_5?s=books&ie=UTF8&qid=1442161888&sr=1-5

Category:

Lyme, research, Treatment, Uncategorized

Leprosy Drug For Lyme?

https://www.lymedisease.org/touched-by-lyme-dapsone/

“In a preliminary clinical trial of 100 patients at his Hyde Park medical office, Horowitz gave Dapsone in combination with assorted other antibiotics. He found that patients reported significant improvement of ALL symptoms, except for headache. He told of one woman who, after being on Dapsone for five weeks, said this was the best she’d felt in 12 years. Her brain fog had cleared and her joint and muscle pain had diminished considerably.

However, Horowitz found that patients who stopped treatment after they began to feel better would relapse. This was true in leprosy as well. He says successful leprosy treatment uses a 12-month regimen of Dapsone and rifampin. He is now extending the protocol with his patients to see if 12 months is the right length of treatment for them as well.

Alas, Dapsone is not without a downside. It can cause serious side-effects, such as anemia, which must be closely monitored during treatment. Furthermore, Horowitz says, there are many unanswered questions about the use of persister drugs such as Dapsone to treat chronic Lyme, and much more research is needed.

You can read Dr. Horowitz’s published journal article about the Dapsone trial here. http://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.pdf

More about who should consider using Dapsone, and how best to minimize side-effects, will be included in his forthcoming book to be released at the end of 2016, ‘How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease.'”

Category:

Lyme, Treatment, Uncategorized

May – Lyme Disease Awareness Month and meetings

May is Lyme awareness month

There is no one better equipped to spread the word about Lyme Disease than you – a sufferer. There’s something authentic about relating to people your personal story.

Highlights of what’s important to share:

1. Lyme Disease is usually a complicated illness for most people as we are infected with far more than borrelia, the causative agent of LD. All of these pathogens work together to evade the immune system. Symptoms vary from person to person and can be anything. If someone is concerned, they should start by filling out some checklists which can be found here:
https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf
symptom-check-list-chart-dr-burrascano-10
https://madisonarealymesupportgroup.wordpress.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/
https://madisonarealymesupportgroup.wordpress.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/
2. Most general practitioners have been educated that LD is hard to get and easy to treat with 21 days of Doxycycline. This is far from the truth unless you are lucky enough to see the tick on your arm and have the classic bullseye rash, and even then it’s Russian Roulette.
3. Testing in a word, sucks. The two-tiered blood testing the CDC supports (ELISA and Western Blot) is no better than a coin toss, and borrelia don’t like to hang out in the blood but rather in immunopriviledged sites like your brain and the synovial fluid in your joints. Going to a regular practitioner and taking the standard tests, if you test negatively, will give you a false sense of security while you may very well be infected. On the other hand, if you test positively, they will treat you with 21 days of Doxy. If symptoms remain they are more likely to give you an anti-depressant than further treatment – while hideous infections are allowed to fester and worsen. While Doxy is a wonderful first-line drug it does not work against Babesia and some other pathogens.
4. The earlier you jump on this the better. Research shows that those who get treatment right away are far more likely to kick this than those who wait. Since many symptoms mimic the aches and pains of age, many chalk up their symptoms to the aging process rather than a disease which can worsen over time and kill – with the ability to enter every organ in the body.
5. After filling out the checklists above, if you have a preponderance of symptoms, get to a Lyme Literate Doctor (LLMD). They are specially trained by ILADS (The International Lyme and Associated Diseases Society) and understand the complexity of MSIDS (multi systemic infectious Disease Syndrome – or Lyme with friends). They typically use a far more sensitive test – that while still a blood test – shows many more elements. They also will diagnose you clinically – not just on what a test shows.
6. One of the best ways to inform folks is to have them watch the documentary, “Under Our Skin,” which does a superb job of showing the schism in the medical community as well as real people who are suffering due to the politically incorrect position of MSIDS in the medical community. Nothing quite replaces seeing 30-40 people all saying, “I was diagnosed with MS, Lupus, Chronic Fatigue, and the whole time I had Lyme Disease.” It is a sad but effective movie that most accurately expresses what MSIDS patients face. For me it nailed my diagnosis before I had seen one doctor – it’s that good. I bought 4 copies and dole them out to people. It’s the best investment in people you could make – besides your time.
7. Bring people to your local support group. Being in a room full of people fighting the same battle is something to behold. Often, this disease isolates folks, even from their own family and friends – as it’s almost impossible to believe unless you are walking the path and have experienced it personally. The sufferers that bring their spouses and family feel much more supported – but for those that don’t have support – the support group is a great place to feel understood and believed, as well as to learn as we educate each other. Many have been marginalized for so long from supposed “professionals” that they are quite beaten down and low. Come up along side them and listen – supporting them in any way you are able. Those actions will do far more than you could ever know.
8. Feel free to copy these things to keep them in your purse or car. That way you have some information at your fingertips. Also, https://www.lymedisease.org/lyme-basics/resources/books-articles-videos-links/ here are some great resources to check out.
9. Never give up hope.
10. Next Madison Lyme Support Group meeting: May 14 from 2:30-4:30 and May 28 same time with Dr. David Baewer from Coppe Labs in Waukesha. Bio forthcoming.