FAQ/Help |
Calendar |
Search |
Today's Posts |
|
11-16-2016, 07:30 PM | #1 | |||
|
||||
Member
|
It has been rough. I have been flaring for the last 2 weeks. I started IV antibiotics a few weeks ago, which insurance is covering since they deemed my case is serious enough to warrant them. My iSpot retest came back positive and that was what BCBS needed to prove that I failed oral abx.
So I'm not sure if the meds are kicking my butt or if it's the change in weather. I have been in full body burn mode and my face has been leading the charge. Is anyone else in a flair right now? On a positive note, with this new treament, my atypical face pain has been starting to disappear. I hope it stays gone. I've also been working with a vestibular specialist who believes that the nerve in my ear was damaged even through my ENT testing didn't show much. She wants me to keep after my PCP and/or neurolgist and try to get them to approve IVIG. I'm just taking this one day at a time..... I hope you are doing well.
__________________
|
|||
Reply With Quote |
"Thanks for this!" says: | janieg (11-18-2016) |
11-18-2016, 09:43 PM | #2 | |||
|
||||
Member
|
Fingers crossed that the IV antibiotics help.
I was flaring about week ago pretty badly, but it's been waning. I'm seeing a Johns Hopkins hormonal specialist next month to try to get me squared away with HRT since my current doc is just throwing darts. Of course I'll be mentioning the SFN and see what, if anything, she might have to say suggestion-wise. Just having a doctor not shrug would be nice. Quote:
|
|||
Reply With Quote |
"Thanks for this!" says: | madisongrrl (11-18-2016) |
11-19-2016, 12:47 AM | #3 | ||
|
|||
Junior Member
|
Quote:
|
||
Reply With Quote |
11-19-2016, 09:15 AM | #4 | ||
|
|||
Member
|
I've been considering mHBOT too. The only thing stopping me is I found out I was claustrophobic during an MRI. Not good. I have heard people saying Cumanda helps with the Bartonella symptoms, mainly the neuropathy. I have ordered some. I was able to get generic Mepron and my insurance covered the whole thing. I paid $0. I was shocked. It is definitely killing Babesia. So another layer is being chipped away from the onion.
|
||
Reply With Quote |
"Thanks for this!" says: | madisongrrl (11-19-2016) |
11-19-2016, 09:19 AM | #5 | ||
|
|||
Member
|
By the way, if you are still having neuropathy after treating Lyme, it's probably Bartonella. Bartonella is the one most often associated with neuropathy.
For everyone else on the forum - you don't have to have a tick bite to get Bartonella. You can get it from a cat scratch too. The testing is really poor for Bartonella as there are a lot of different strains and they only test for one. So you could have a different strain and it won't show up on the test. |
||
Reply With Quote |
"Thanks for this!" says: |
11-19-2016, 12:24 PM | #6 | |||
|
||||
Member
|
Quote:
Johns Hopkins Neurology and Neuromedicine: Small Fiber Sensory Neuropathy "A small percentage of patients with SFSN experience sub-acute onset sensory disturbances diffusely over the whole body, including the trunk and sometimes even the face. These patients have non-length-dependent SFSN and almost all cases are idiopathic." _________ |
|||
Reply With Quote |
11-24-2016, 02:57 AM | #7 | ||
|
|||
Junior Member
|
"sub-acute"... would be great news, right, as it would mean it would go away and not be chronic ?
Quote:
|
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
reasons for taking vitamins and supplements for sensory symptoms 9 years later | Traumatic Brain Injury and Post Concussion Syndrome | |||
Supplements that help pn symptoms but make fm worse ? | Fibromyalgia and Chronic Fatigue | |||
PCS symptoms, what kind of symptoms and feelings do you have? | Traumatic Brain Injury and Post Concussion Syndrome | |||
PN symptoms from supplements and vitamins? | Peripheral Neuropathy |