Headed to Disney with Lymes

[dakotix]

Oh boy, a year of planning and a week ago I was diagnosed with Lymes. I'm on medication but the symptoms are horrible and the antibiotics are causing horrible gastro issues. I am mobile but prone to fatigue, dizziness, cramping nausea and diarrhea. I think I'll be ok and I have a handle on managing my symptoms. I am just so bummed at the timing. Has anyone else had to experience this at Disney?

 

[Sadie22]

My doctor strongly recommends taking probiotics and eating yogurt while taking antibiotics and for a while afterward. The antibiotics kill off the bacteria in your gut, and you need to replace them.

 

[mistysue]

By Lymes you mean Lyme disease, right? If so, I was still recovering on our last trip. Being at Disney was still much better than being at home.
How far out is your trip? Most of the antibiotics side effects can at least be lessened by taking a probiotic or eating yogurt or kefir. I would plan a little extra down time even if it has to simply be an extra long lunch at table service or nodding off a bit in some of the shows... It might be the first time you want to be stuck on the Ellen ride.
Good luck, I hope you start feeling better!

 

[dakotix]

Thank you both. Yes I have Lymes disease. (round 2) I am taking pro-biotics. I am taking the maximum I could find (100 billion). I was taking the variety that had 30 billion but it didn't seem to help enough. Anyway, yeah its been a long couple weeks. I also got a supplement that has peppermint fennel and ginger in it. It is meant for Crones patients but I imagine it might help my situation as well. We leave in 2 days!

 

[Pooh bear 39]

All I wanted to do was sit down and drink. It was also June (many moons ago), so the heat got me. I definitely agree with probiotics and yogurt. Though after taking antibiotics and eating yogurt for 9 months, I can't stand the stuff anymore.

 

[emldrl]

I don't know much about Lyme disease, but based on the symptoms you described, I had an idea. Have you thought about the DAS? Sounds like waiting in long lines might be VERY tricky, if not down right impossible. I would think the DAS would be really helpful. If you decide to ask for it, just explain why waiting in line would be extremely difficult- I know, have fun explaining the problem, right? You are already suffering so much, so if this could help make your trip better, I say go for it! Anyway, just thought this might help. Hope you feel better soon and have a great vacation!!

 

[RubySue]

Lyme is terrible and tricky. I have late stage Lyme and Lyme connected MS. I wasn't diagnosed until five years ago -- 20 years after I was unknowingly infected by some darn tick.

I assume that your doctor explained about herx reactions? When the bacteria (Borrelia burgdorferi) die off from the antibiotics, they produce toxins which make you feel awful. The herx reactions can come in waves. You can be feeling OK, then feel like you've been hit by a bus.

Suggestions: Take it slow and easy. Be prepared to return to your hotel room. Stay out of the sun. Drink plenty of water. Consider renting an ECV or a rollator. Avoid gluten and maybe dairy foods (gluten increases inflammation and for some people so does dairy)

(BTW: it's Lyme, no "s" at the end)

Despite the antibiotics, I hope you have a wonderful trip!

I sent you a PM

 

[Bilge Rat]

Have you thought about the DAS? Sounds like waiting in long lines might be VERY tricky, if not down right impossible. I would think the DAS would be really helpful.

Great idea about the DAS but based on the mobility related symptoms the OP listed, I would imagine the CM on duty would recommend a wheelchair and that will not address the OP's issues IMO. However, there are other Lyme disease symptoms that are neurological and will allow the OP to qualify for the DAS. Of course, the OP would actually have to be experiencing these symptoms.

Some patients have developed Lyme-related psychiatric symptoms:

*Psychoses including hallucinations and delusions.
*Emotional lability: rapid mood swings, episodes of rage, crying, reduced impulse control.
*Depression.
*Suicidal thoughts and behaviour.
*Anxiety/Panic attacks.
*Mood swings that may mimic bipolar disorder (manic-depression).
*Obsessive-compulsive disorder (OCD).
*Sleep Disorders.
*An Attention deficit/hyperactivity disorder (ADD/ADHD)-like syndrome.
*Autism-like syndrome.
*Delirium.
*A progressive dementia.

I would post a link but I don't have enough post.

 

[gemini2727]

Are your GI issues a continual thing? Or do they come and go? If they're persistant and/or getting worse, you might want to be tested for C Diff (an intestinal infection that can follow antibiotic use) which would need to be treated as well. Not wishing this on you on top of everything else, but just something to consider.

 

[emldrl]

Great idea about the DAS but based on the mobility related symptoms the OP listed, I would imagine the CM on duty would recommend a wheelchair and that will not address the OP's issues IMO. However, there are other Lyme disease symptoms that are neurological and will allow the OP to qualify for the DAS. Of course, the OP would actually have to be experiencing these symptoms.

Some patients have developed Lyme-related psychiatric symptoms:

*Psychoses including hallucinations and delusions.
*Emotional lability: rapid mood swings, episodes of rage, crying, reduced impulse control.
*Depression.
*Suicidal thoughts and behaviour.
*Anxiety/Panic attacks.
*Mood swings that may mimic bipolar disorder (manic-depression).
*Obsessive-compulsive disorder (OCD).
*Sleep Disorders.
*An Attention deficit/hyperactivity disorder (ADD/ADHD)-like syndrome.
*Autism-like syndrome.
*Delirium.
*A progressive dementia.

I would post a link but I don't have enough post.

I was actually thinking about the bathroom issues, which could make it VERY difficult to wait in a long line. Just going on the info OP gave. Hope all the information helps!

 

[SueM in MN]

Great idea about the DAS but based on the mobility related symptoms the OP listed, I would imagine the CM on duty would recommend a wheelchair and that will not address the OP's issues IMO. However, there are other Lyme disease symptoms that are neurological and will allow the OP to qualify for the DAS. Of course, the OP would actually have to be experiencing these symptoms.

Some patients have developed Lyme-related psychiatric symptoms:

*Psychoses including hallucinations and delusions.
*Emotional lability: rapid mood swings, episodes of rage, crying, reduced impulse control.
*Depression.
*Suicidal thoughts and behaviour.
*Anxiety/Panic attacks.
*Mood swings that may mimic bipolar disorder (manic-depression).
*Obsessive-compulsive disorder (OCD).
*Sleep Disorders.
*An Attention deficit/hyperactivity disorder (ADD/ADHD)-like syndrome.
*Autism-like syndrome.
*Delirium.
*A progressive dementia.

I would post a link but I don't have enough post.

For the OP, I would suggest reading the information in the sticky near the top of the board about DAS.

Not everyone with Lyme disease has those symptoms, and even if they do, not all are going to cause significant problems that would require a DAS.
I'm sure this poster means well, but continually googling and posting 'suggested symptoms' gives the appearance of trying to come up with symptoms to rationalize getting a DAS. If symptoms are enough to impact life activities, people should already be aware of what they are..
SO, please don't just google things to suggest sympts to people.

Look at the needs/issues you have that may impact waiting in a regular line. Those are what you need to be able to explain