My friend has been told she has ALS. Her symptoms are swallowing and talking problems because her tongue and lips are numb.
She is now getting twitching in her legs. This has been coming on for several months.
She has had EMG tests showing Nerve problems and that is what they have come up with (ALS).
She hikes and has always been a nature person. Lives in Southern California (San Diego area).
Please give us some advice. I of course think it could certainly be Lyme. Thanks from both of us. Lo XX Posts: 187 | From Sacramento, California | Registered: Apr 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
There was a speaker at the Lyme Conference this past year who spoke about ALS and Lyme. He has seen improvement with his patients who have been dx with ALS but treated for lyme disease.
I think you might be able to find the notes on the Lyme Disease Association Web Site or the ILADS web site. NOt sure. But, it is a good starting place.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
When my symptoms are bad I also have ALS like symptoms. It's very scary not being able to swallow.
Kam is right at the conference they talked about ALS. One llmd said that she put all her ALS like patients on IV Rocephin and they noticed improvements. One of her patients did iv and bicillin shot. This patient claimed that's when he noticed great improvements.
I had great improvement on rocephin. Before iv I had difficulty swallowing, walking and breathing.
I would urge you to get to a llmd asap.
Good luck, and do not take no for an answer when it comes to treatment.
Posts: 175 | From Pa | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
Tincup, the best of the best, our leader! It is me and so glad you are good. I go on every so often to make sure you are around and OK. I still have this crap,it is alive and well, positive bands by the truckload.
I hate this damn disease.
Love, Lo XX Posts: 187 | From Sacramento, California | Registered: Apr 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well dang it all.. good to see you.. but sorry you are feeling so Lo.
As you can tell by tutu's greeting.. we sure missed you!!!
About your friend. I've seen too many cases of Lou Gehrigs misdiagnosed when it was really Lyme and coinfections. I would drag your friend to a good LLMD - ASAP. The sooner the better. It sounds like it is earlier stages (of a Lou Gehrigs-like condition) from what you describe.. which is good.
One doctor had at least 156 LG patients in a study not too long ago.. maybe more. They were ALL Lyme and coinfections... and we're waiting for study to be published.
There is a doctor in Colorado who has dealt a good deal with this and personally experienced it.. and recovered to go back into practice. I have asked Melanie to provide us some doctors referrals and hope to hear from her soon.
I have a mess of files on ALS/Lyme connection.. with abstracts.. so if you need some.. just let me know. Too many to post just randomly.
If we can do anything for you or your friend.. just let us know.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
If she delays treatment at all she will probably die. She still may die, but if she can start treatment right away sometimes ALS will respond to Lyme therapy, usually IV Rocephin.
EVERY single successful ALS/Lymie I know was treated for Babesiosis. PERIOD.
I used to web The ALS/Lyme Page and co-moderate The ALS/Lyme Group when we had a bunch of people.
Locally, we had one guy (Mike my ex husbands ex business partner)who got treated with orals right away and Mepron and he is fine.
But she needs to get in treatment yesterday.
IV Rocephin would be her best bet, but Kari Mayne an ALS/Lymie got better with IM Bicillin high dose.
But orals are NOT her best bet- Mike is/was (not in contact) the only ALS/Lymie I know of who responded so well to orals- but he began treatmnt the DAY after his ALS diagnosis because my ex husband who had Lyme and knows Lyme had him call me and he got in the next day to a good LLMD.
The other ALS/Lymies I know locally- 2 got better with IV Rocephin but are like me still on maintenance abx- and one died of c.difficle but he was LATE ALS.
I had many ALS symptoms including muscle weakening and swallowing problems, choking.
I believe it/ALS is a TBE virus coinfection. Some orals with TBE viruses can trigger the progression to go FASTER, and people will die faster. We saw this happen in the ALS/Lyme group online. The Russians found some antibiotics will not activate the virus. This is what we saw in the originaly ALS/Lyme group. SOme people speeded up once on abx. They died. That did not happen on Iv Rocephin which helped some people./
Some people died anyway.
TIME really matters./ Every day/ It is a cascade!!!!!!!!!!!!!!!
Some people DO respond to treatment- I hope your friend is one of them/
Liegner said 1 of 7 of his ALS patients were responsive. That is better odds than ALS which is 7 of 7 dead.
I would get your friend on Artemisia for Babs NOW or yesterday!!! And get her into see the nearest LLMD- Best wishes, & your friend can call me, 1-831-662-3628 Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. Re swallowing/talking problems- 1: Ann Agric Environ Med. 2001;8(1):95-7. Links Dysarthria as the isolated clinical symptom of borreliosis--a case report. Gustaw K, Mirecka U. Outpatients Neurological Department, Institute of Agricultural Medicine, Jaczewskiego 2, P.O. Box 185, 20-950 Lublin, Poland. [email protected]
This report presents a case of dysarthria due to hypoglossal nerve mono-neuropathy as the only consequence of neuroborreliosis. The 65-year-old man with a seven-months history of articulation disturbances was examined. The speech of the patient was slow and laboured. A slight weakness of the muscles of the tongue (left-side) was observed. The patient suffered from meningitis due to Borrelia burgdorferi infection in 1999 and initially underwent a successful antibiotic treatment. Detailed radiological investigation and psychological tests were performed and co-existing neurological diseases were excluded. To describe profile of speech abnormalities the dysarthria scale was designed based on S. J. Robertson Dysarthria Profile. There were a few disturbances found in self-assessment of speech, intelligibility, articulation, and prosody but especially in the morphology of the articulation muscles, diadochokinesis, the reflexes (in the mouth, larynx and pharynx). Needle EMG examination confirmed the diagnosis of mono-neuropathy of left hypoglossal nerve. The study confirms the fact that neuroborreliosis may evoke chronic consequences.
PMID: 11426931 [PubMed - indexed for MEDLINE] 1: Neurologia. 1999 Jan;14(1):36-7. Links [Lower cranial nerve involvement as the initial manifestation of Lyme borreliosis] [Article in Spanish] Velazquez JM, Montero RG, Garrido JA, Tejerina AA. Lyme disease or Lyme borreliosis is an infectious disease transmitted by ticks and caused by Borrelia burgdorferi. Being clinically different from Relapsing Fever it may cause an array of symptoms, specially cutaneous and neurological but also musculoskeletal and cardiac ones. Within the neurologic manifestations of Lyme disease the affectation of low cranial nerves is, to our knowledge, extremely infrequent. We present the clinical case of a 35 years old male whose initial symptoms were low cranial nerve dysfunction with a cerebrospinal fluid compatible with meningitis. Serology against Borrelia burgdorferi both in serum and cerebrospinal fluid was positive.
PMID: 10079691 [PubMed - indexed for MEDLINE] 1: Rinsho Shinkeigaku. 1990 Jul;30(7):787-9. Links [A case of cranial polyneuropathy presenting with prominent facial diplegia, elevated serum Borrelia burgdorferi antibody and lymphocytic pleocytosis] [Article in Japanese] Hasegawa Y, Ueno S, Takegami T, Okamoto S. Department of Neurology, Nagoya National Hospital.
A 54 year-old male patient developed acute cranial polyneuropathy including prominent facial diplegia and radicular++-neuritis. He was proven to have lymphocytic pleocytosis, and elevated serum Borrelia burgdorferi antibody to X800 (normal; less than X200). A diagnosis of typical early neuro-borreliosis was made after these clinical and laboratory findings. This case is the first neuro-borreliosis showing the triad of neurological manifestations (meningitis, cranial neuritis, radicular++-neuritis) in Japan. It is concluded that neuro-borreliosis should be considered to be a cause of acute cranial polyneuropathy, particularly of facial diplegia, even if the patient has no apparent history of a tick bite.
PMID: 2242636 [PubMed - indexed for MEDLINE]
1: Rinsho Shinkeigaku. 2001 Sep;41(9):632-4. Links [A patient with neuroborreliosis presenting gadolinium-enhanced MRI lesions in bilateral facial nerves] [Article in Japanese] Tokunaga H, Ohyagi Y, Furuya H, Araki T, Yamada T, Isogai E, Kira J. Department of Neurology, Neurological Institute, Graduate School of Medical Sciences, Kyushu University.
We report a 33-year-old man with bilateral facial paralysis due to neuroborreliosis. About three weeks after rhinorrhea and fever lasting four days, he noticed fatigue in the legs and paresthesia in all four extremities. Another week later, he developed paresthesia in his tongue and bilateral facial muscle weakness, and was admitted to our hospital. On admission, neurological examination revealed moderate bilateral facial muscle weakness, mild paresthesia in the tongue and four extremities, and decreased Achilles tendon reflex bilaterally. Mild pleocytosis and increased protein were found in the cerebrospinal fluid (CSF). IgM antibodies that reacted with the antigens of Borrelia garinii and Borrelia afzelii were found in his serum. Clinically and serologically, he was thus diagnosed as having neuroborreliosis. Brain MRI revealed gadolinium-enhanced lesions of the bilateral facial nerves in the facial nerve canal portion. After three weeks of treatment with 100 mg/day doxycycline and 2 g/day ceftriaxone sodium, his symptoms and CSF abnormalities were rapidly improved. Although facial nerve paralysis is a major symptom of neuroborreliosis, the present report is the first to detect the inflammatory lesions of the facial nerves in the facial nerve canal portion by MRI.
PMID: 11968752 [PubMed - indexed for MEDLINE]
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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YOU ARE REALLY THE BEST GROUP OF PEOPLE THERE ARE! A REALY FAMILY FULL OF LOVE AND THE STRONG DESIRE TO HELP AND HEAL.
I LOVE YOU ALL !!
LO Posts: 187 | From Sacramento, California | Registered: Apr 2001
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
ALS is a motor neuron disease and does not affect sensory function. Feeling numb is not consistent with an ALS diagnosis. Something else must be going on, time to find another doctor.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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