posted
My daughter has continued to have worsening neurological symptoms, technically falling under the category of a movement disorder (dystonia or dyskinesia), to the point where she has been rehospitalized. Could some of the other forum members describe some of the neurological movement symptoms they have seen with advanced Lyme. Unfortanately, now that we are back within the mainstream medical system, they are having a tough time with the Lyme diagnosis. We recently got results back from the Igenex lab in CA showing the two very Lyme specific bands 31 and 34 on her IgM which were removed from the CDC version of the Western Blot due to conflict with the past proposed Lyme vaccine.
Any thoughts would be helpful.
Posts: 5 | From East Montpelier, VT | Registered: Jul 2010
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
You wrote above-
Unfortanately, now that we are back within the mainstream medical system, they are having a tough time with the Lyme diagnosis.
I doubt much help will be forthcoming from them.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
Sorry to hear that your daughter is in the hospital.
My daughter's neurological movements have been diagnosed as tics and nocturnal myoclonous by her (former) neurologist. Unfortunately, the neurologists she has seen do not believe there is a connection between these muscle twitches and her constant headache.
My daughter was in the hospital last October for her headache. I was hoping to get her some pain relief. They did not accept her Lyme diagnosis but I did not try to convince them. I just wanted them to deal with the symptom, hopefully give her some relief, and get out of there.
It was still a horrible experience. She left in even worse shape than she went in. I'm not sure if it was from lack of abx during that time or a result of their treatment.
Her muscle twitching was at its worst then, but they "didn't see it", even though a nurse did see it.
When she got out of the hospital and back on her Lyme treatment, her twitching improved at some point.
How are they treating her in the hospital? Do you have a LLMD?
Posts: 984 | From US | Registered: Dec 2007
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posted
We do have a LLMD and he has spoken with the hospital, reportedly having a good, professional conversation with them. The tough thing for us is that the neurological symptoms are serious enough that she is needing to be fed through a feeding tube (i.e. she needs advanced care that we can't really provide at home) but there are apparently no hospitals around (the northeast) that will provide this level of care but also work with a diagnosis of chronic Lyme. We are pushing hard for her to be back on doxycycline at a minimum.
Posts: 5 | From East Montpelier, VT | Registered: Jul 2010
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posted
I am so sorry to hear about your daughter's suffering-and yours.
It seems like your daughter will not get the treatment she needs for her movement disorder if it is due to Lyme disease.
I have myoclonus, or dystonia or whatever neurologist a, b, or c calls it. It got much worse during a Lyme relapse late last year. I am on antibiotic treatment and the symptoms have improved slightly. In December/January I began having issues with swallowing. I never had paralysis, but it became difficult, and I also would get dizzy/nauseus. I lost alot of weight. This symptom resolved with antibiotics quite quickly. However I still have movements in my lower face, throat and neck area. I am on antibiotic treatment with an LLMD and also on medication for the symptoms. I am hoping that my symptoms do not get worse and start moving in the "getting better" direction.
I know the name of a doctor who is lyme literate and also a neurologist if you would like you can message me and I can give you the contact information. I am probably going to make an appointment with this person myself.
I do have other symptoms of active lyme, although these seem to respond to antibiotics. I have had additional neurological conditions respond to antibiotics...the movement disorder one seems to be taking longer. Because the throat area is involved for me, it is a little scary.
You shouldn't have to be "pushing hard" to get her on doxycycline. That is terrible. I would get her on antibiotics as soon as possible. Do not stop trying, do not stop looking, get her the help she needs.
Blessings
Posts: 172 | From ohio | Registered: Feb 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Could you daughter have other infections? Such as HHV-6? Coxsackie B?
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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My husband has had many of the neuro symptoms you describe. His primary symptoms from the beginning of his illness in 2001 have been Parkinsonian tremors and nausea/vomiting/dry heaves. Over the years his tremors have progressed into seizure type episodes and myoclonus and dystonia.
For hubby babesia and bartonella have been the primary factors in his neuro symptoms. He was in the hospital for a week at the end of June. At that time he was put back on IV Rocephin and they tried a new seizure med -- the combination seems to have almost stopped his tremors and myoclonus and dystonia for now.
Hubby has a neuro appointment with one of the top LLMD neurologists in Connecticut this Thursday. We are trying to figure out what direction to go in going forward.
Hubby has had both good and bad hospital experiences. If they aren't cooperating then sometimes you have to take control. Whether that means requesting a 2nd opinion or complaining to the patient advocate or even "self-administering" meds -- sometimes you have to just go with your own judgement.
Hubby has zero positive bands on his Western Blots but he does have a SPECT scan and bloodsmear from Clongen which it is harder for mainstream docs to ignore.
IV Ativan used to control hubby's movement disorders. Then for a year or so we used other things such as IV Demerol or even high dose Benadryl (400 mg per day in 4 divided doses). For now when he has a really bad episode the ER will use up to 8 mg of IV ativan if needed to calm things down.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Sorry to hear about your daughter's struggles.
For me, neuro Lyme means twitching mostly in legs, moving numbness in hands and feet, poor walking, zero stamina, being tired but unable to sleep well, optic neuritis issues, and maybe some minor cognitive issues.
Best of luck.
Posts: 252 | From NJ USA | Registered: Mar 2004
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