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This journey has been such an emotional roller coaster for my husband and me! Just last week he had a good day and I thought WONDERFUL!...he's on the road to recovery! ... Only to despair when his symptoms make a turn for the worse.
Hubby has been sick for more than a year (years?) but he only started feeling bad in January. His symptoms went downhill so far and so fast through March, April and most of May. His symptoms are double vision which has gotten worse, crushing fatigue...gotten better, severe weight loss, loss of balance and slurred speech.
We went through many doctors and he's been seeing an LLMD since April.
Our LLMD got him on IV Rocephin the end of May and within two weeks his crushing fatigue lifted and he regained his appetite. Through March-May he lost almost 40lbs. This was a man who was thin to begin with. Once he turned the corner and his appetite returned he has regained 15 lbs.
His balance was so bad that he kept falling over and needed a walker to get around. Now with IV abx and seeing a physical therapist his balance is much better. He uses a cane and can sometimes go with out it. I'm actually surprised at how well PT has worked for him!
Double vision continues to get worse however. He has an appointment with an neuro ophthalmologist at Wills Eye hospital the end of the month.
I think the thing that concerns me the most right now is his speech! I can hardly understand him and I know how frustrating is is for him. It's gotten progressively bad over the summer. It scares me too!!! Why would it be getting worse instead of better? Even after all of the supplements and the IV Rocephin?
Like so many others I wonder...Is this Lyme or something else? We have gotten some pos lab results for Lyme but he had it seven years ago and seemed cured after a month on oral Doxy. Never had a problem after that until this past year.
Anyone else or know of someone who had problems with slurred speech and have gotten better? We see a speech therapist next week. TIA!!
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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Thanks and I do hope you're right when you mention that he's improving "overall". What's so frustrating is that it's really hard to tell for sure....or even that it's definitely Lyme.
Sometimes I think it might be something else but the doctors say that he doesn't have ALS or MS even though he has several lesions on his brain.
I get very scared thinking about what the not too distant future will bring. He has a great job that he can no longer go to and they have made him go on short term (six months) disability.
Up to this point he's been working from home since February and getting his regular salary.
When the short term ends he has long term disability through Cigna but I have read so many horror stories about disability claim denials.
So many people who have been turned down and have to appeal repeatedly until they are just worn down (in addition to their illness) or simply bankrupt. This scares me a lot!
I had my own business from home but have cut it way back to help take care of him.
He's been on IV Rocephin which helped a lot the first month and now that it's more than two months (I realize that's not very long at all in the Lyme world) I'm thinking that maybe he should try another IV abx.
If you feel like moving the thread to medical please do so and thanks for all of your help!
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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... Only to despair when his symptoms make a turn for the worse. ![[Frown]](frown.gif)
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