Hello everyone,

I usually post in the chronic pain forum well at least i did at the other site but it now seems more fitting to post here as well.

So I have just been Dx'd with Lyme disease and it is chronic. I have the arthritis from it, nerve issues, memory problems, heart issues, etc.

I believe i have had this since I was 19 and I am now 35.

Hello everyone, my name is Lilith, my life partner has Lyme disease. She contracted it witha bad case of Posion Ivy. It was almost a year before she was Dx'd with it. She is in late stage Lyme diseasd...1 week later she got news she has MS. It has been over a year her condition has really been all down hill. She can hardly walk, talk, eat, severe memory loss, judgement is low, she is incontinent almost all the time. She is allergic to latex so she can't wear depends.... Our lives have changed dramatically over this past year..

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

Hello JC...
Nancy has over 100 lesions on her brain for the MS. Her Lyme disease titer was very high. Her brain is distroyed, she will not get better. We are going to the neurologist tomorrow. She has been under treatment for MS since May 2005. We got married the year before. I wish there was a quick fix for her. But her condition just worsens. Her mental age is about five. It is very sad.
Thank you for the information you gave to me. Write to me anytime...
Lilith

Lilith,

I'm so sorry to hear her situation is so bleak, and to hear about how quickly it has all progressed.

We also have a caregiver's support forum here, too, although I am not sure how active it is.
http://neurotalk.psychcentral.com/fo...prune=365&f=56

Best to you and Nancy~

Cara

what am I chopped liver?

(((Quahog)))

so sorry your post got overlooked...possibly occurred when the forums got moved around

I dont know much about Lyme Disease, but I do know that you are a valued member of this community.

I am so sorry but it was your post that inspired me to write. So how are you coping? Lyme disease is so horrible if not caught early. I wish you well. Lilith

I am so sorry Quahog! I hope you will please accept my apology. I just happened to stop in quickly that day, and the reason I only responded to the most recent post (Lilith's) is because it struck me that your post hadn't received any responses ... and I didn't want that to happen to anyone else. . The MS diagnosis mentioned in her post also caught my attention.

I erroneously thought you had probably just moved on due to the low activity here (last previous thread before yours was over a month old). That is also why I suggested checking back here for several weeks (as you have done!)..because once some people connections are made here~ the activity will follow.

I would also recommend B12 deficiency testing for you, too. I've met two people on the peripheral neuropathy forum from the old BrainTalk site...who had both Lyme Disease and B12 deficiency... the two diagnoses came years apart... but they didn't fully improve until both the Lyme deficiency and the B12 deficiency were treated. They both had gluten sensitivity as well... so really all three things needed treating. But, they both did improve after treating all conditions. Unfortunately, Carryon and StacyC don't post any longer, and all of their old posts have disappeared into the black hole somewhere after the old BT forum crashed. The symptoms are very overlapping, so it can be easy to miss another co-existing condition. Of course, much also depends upon how long these conditions go undiagnosed, and how severe the damage. I'm also not saying these always go together, but they sometimes do.

Thank you Quahog for letting us know you are still reading here! And I feel like a real chump for welcoming Lilith and not you! This was truly an unintended oops of mine .

Cara

I just found this thread. I haven't been online much the past week/weekend.

Some of the treatments for Lyme Disease involve long term high dose antibiotics. If you choose these, then I would advise you to contact me
with your regimen and I'll look up in the reference I have, the drug induced
depletions they may cause.

Antibiotic therapy not only upsets the bowel flora, but can upset the whole body and lead to unnecessary side effects. So if you would like to know
further, either post to me on our Vitamin forum here, or PM me, or email me
whichever you prefer.