Hi Lilith,
Welcome to NeuroTalk! I don't have Lyme Disease, but I wanted to say hi and welcome you! NeuroTalk is rather new, and this particular forum doesn't have a lot of activity (yet). Some people likely check in occasionally to look for new posters, so please keep checking back to see whether any new responses come in over the next weeks.
It sounds like the last year has been very very difficult on both of you. How long has she been receiving treatment for the Lyme Disease? I have known a couple people who have been through it, but I'm sorry I don't have any first experience to share. Do they expect she will show some improvement?
I do find it interesting that an MS diagnosis came on the heals of the Lyme disease dx. I don't know much about Lyme Disease except that there can be diagnostic confusion with other diseases that have like symptoms, including B12 deficiency, gluten sensitivity/celiac disease, and even MS. I do know quite a bit about B12 deficiency and gluten sensitivity because those have touched my family.
I am most active on the Gluten Sensitivity/Celiac Disease forum where I have know several woman who had Lyme Disease, B12 deficiency, and Gluten Sensitivity. In that case,
all three of these things needed to be treated for the person to show improvement.
Both B12 deficiency and gluten sensitivity can cause neurological problems of severe proportion, yet many neurologists don't think to look for either of them. I've heard that even on Lyme Disease forums they have noticed an increased number seem to have Gluten Sensitivity. Nobody that I know of has determined a reason for that but they seem to often go together, so I would encourage you to have you partner tested for both gluten sensitivity and B12 deficiency. Both are important, but
I particularly stress the B12 deficiency testing. B12 deficiency can also cause many MS - Lyme Disease like symptoms, but when symptoms are related to B12 deficiency... they usually improve... so it is something you don't want to miss.
You can check out The Gluten File linked below my name for more information on Gluten Sensitivity, B12 deficiency, MS, and Lyme Disease. The latter two are mostly just links to other resources, but you may find some useful information. Just scroll down the right bar and look for the pages on these things.
Take care of yourself, too!
Cara
P.S.
Here are a couple of abstracts about the possible diagnostic confusion between these diseases. Even the doctors are sometimes fooled.
Unfortunately the rate of misdiagnosis remains around 5%-10%, indicating that 1 in 20 patients thought to have MS has, instead, a condition resembling
MS. Conditions often confused with MS may be inflammatory (systemic lupus erythematosus, Sjogren's syndrome, vasculitis, sarcoidosis, Behcet's disease), infectious (
Lyme disease, syphilis, progressive multifocal leukoencephalopathy, HTLV-1 infection, herpes zoster), genetic (lysosomal disorders, adrenoleukodystrophy, mitochondrial disorders, CADASIL), metabolic (
vitamin B12 deficiency), neoplastic (CNS lymphoma) and spinal (degenerative and vascular malformations) diseases.
The differential diagnosis of multiple sclerosis: classification and clinical features of relapsing and progressive neurological syndromes. PMID: 11794488
Neurological manifestations of gastrointestinal disorders are described, with particular reference to those
resembling multiple sclerosis (MS) on clinical or MRI grounds. Patients with
celiac disease can present cerebellar ataxia, progressive myoclonic ataxia, myelopathy, or cerebral, brainstem and peripheral nerve involvement.
Antigliadin antibodies can be found in subjects with neurological dysfunction of unknown cause, particularly in sporadic cerebellar ataxia ("gluten ataxia").
Neurological manifestations of gastrointestinal disorders, with particular reference to the differential diagnosis of multiple sclerosis. Ghezzi A, Zaffaroni M. 11794474