posted
Does anyone know how to get in contact with Californialyme? She (Sarah) was an active member on this website for several years. She hasn't posted a message since 2007. She was diagnosed with ALS and then found out she had Lyme disease. She was treated for Lyme and got healthy. I was diagnosed with ALS four months ago. Five weeks ago I tested positive for Lyme and I'm being treated by an LLMD. I would like to talk to Californialyme or anyone else who has a similar experience.
Posts: 12 | From Maryland | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- She doesn't come here anymore. She got much better and was able to shift focus to living her life.
Honestly, I don't think you would find out much specific to your situation other than the diagnosis. It's really a fairly common situation to be misdiagnosed, see a LLMD, get assessed and find tick-borne infections, get treated, get better (hopefully).
It's not a quick or easy path for anyone but you have enough success stories to be hopeful.
There are many other ways to find information you seek. There are many past threads about ALS. Search for past threads here:
Excerpt: `` . . . one year after initiating the antibiotic and anti-protozoal treatment, he was declared to be free of motor neuron disease by his neurologist . . .'' from:
ALS Caused by Lyme Disease with Babesia Co-infection Posted March 15, 2008
After experiencing difficulty speaking during his nightly radio show, Charles McPhee was diagnosed with a bulbar (neck and throat) presentation of ALS (amyotrophic lateral sclerosis), or Lou Gehrig's disease, on June 23, 2006.
After researching the possible causes of ALS, Charles decided to treat his ALS with a combination of antibiotics (ceftriaxone, Flagyl, azithromycin) and anti-protozoals (Mepron and Malarone). His rationale for using them is based on a recently documented link between ALS, Lyme Disease, and Babesia.
. . . . - full article at link above.
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Addresses both ALS that was really lyme and also Mayo missing lyme in another patient:
Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy
W. T. Harvey, D. Martz
ABSTRACT
This report summarizes what we believe to be the first verifiable case of a significant and progressive motor neuron disease (MND) consistent with amyotrophic lateral sclerosis that resolved during treatment with i.v. ceftriaxone plus oral atovaquone and mefloquine.
The rationale for use of these antibiotics was (i) positive testing for Borrelia burgdorferi and (ii) red blood cell ring forms consistent with Babesia species infection. The patient has continued to be free of MND signs and symptoms for 15 months, although some symptoms consistent with disseminated Borreliosis remain.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
She is a member on www.lymefriends.org under the user name **** but she is not real active on the site currently. However if you send her a message, most people's messages go to their email, so she'll probably get it.
But she is my Facebook friend and we talk all the time on there. I can get a message to her quickly that way.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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