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Hello to everyone! I am so thankful I found this group.
Here is my story:
2001: dx Asthma
2005: Sinus surgery due to chronic sinusitis
2008: Emergency gall bladder surgery
2011: Hypothyroidism
2013: Strange virus@Ariel wrote:
2013: Strange virus
Maz, thank you for the info on Lyme Disease. Is the IGeneX test a test you request from the doctor or one that I need to retrieve info about and request a test kit or something?
I guess it’s just been a surprise to me to see people using both Plaquenil and the AP. The side effects of Plaquenil scare me.
My toes on my left foot are feeling kind of numb. Is this another effect of RA?
I wasn’t aware that flying could be a problem with RA. Your response has me reconsidering whether we should lose some of the money and cancel the flights and drive. It’s a 24 hour drive, over a span of 2 days for us. I know the car ride would bring on some stiffness, but I’m concerned that flying could be worse. I don’t know what to do.
I’m finding that I’m just not anything like my former self anymore. Went to a cookout last night, and I’m just not as social. I just kind of sit there and watch everyone else, like an observer….sigh.
Thank you for taking the time to respond. I sincerely appreciate it.
Ariel,
I would definitely fly there. I am in the similar situation and I flew 3 hours in August looking for a warm weather and everything was fine. The family wanted to visit the ZOO and I was first ashamed to ask for a wheel chair, but it helped me a lot and I saw many friendly people smiling to me. It was so far the first and the last time I used a wheel chair. Don’t worry too much. Go by plane, look forward and you will be fine. If you need help ask. Don’t be ashamed to ask. At the airport the staff will let you on board first. This is just temporary and now you need a little bit of help. When you will be OK you will help others in the same situation. This is my advise.
Linda L.Linda,
Thank you for the advice on flying. I’m glad to know that it worked okay for you. Going to Disney is definitely more overwhelming than I had originally planned. Hoping I feel a little better by then.
@Ariel wrote:
Is the IGeneX test a test you request from the doctor or one that I need to retrieve info about and request a test kit or something?
Unless you’re seeing a Lyme Literate MD who would have the IGeneX testing kits in the office, you’d need to call the lab to ask them to mail you their testing kit. It comes with everything needed (blood draw vials, foam container for packing, paperwork and return mailer) and it just needs a local doc to sign off on the blood test requisition. If the doc who signs off on the lab doesn’t draw blood, then most local blood draw places will do it for a nominal fee if you take the test and signed requisition with you. Most people start off with a basic western blot (test #s188 and 189) and this can provide enough info as to whether there has been some exposure to the more specific borrelial proteins (even if the overall test appears negative). If you’ve already had standard testing run for Lyme and it was negative, then it’s worth running the IGeneX western blot. The number for the lab is right on their site: http://www.IGeneX.com
I guess it’s just been a surprise to me to see people using both Plaquenil and the AP. The side effects of Plaquenil scare me.
It’s kind of interesting to me that plaquenil is an anti-protozoal, because so are the tetracyclines! Doxy is given as an anti-malarial prophylactic when traveling abroad to countries where the infection is a risk. LLMDs will use plaquenil as an adjunct to other abx, especially when there is inflammation and it also has some cyst-busting properties, along with anti-babesia properties. If side-effects are experienced with plaquenil, they become evident pretty quickly, but it’s just not prescribed in the mega doses it used to be prescribed in where it was very toxic and it can help with inflammation in the early days while mino is kicking in. LLMDs also change up Lyme protocols quite often, so it’s not usually used for too long.
My toes on my left foot are feeling kind of numb. Is this another effect of RA?
If you have swelling in your ankles and feet, this can create pressure on adjacent nerves and cause weird sensations like tingling and numbness. If not due to swelling or injury, then neuro signs can be related to Lyme, if it’s involved.
I wasn’t aware that flying could be a problem with RA. Your response has me reconsidering whether we should lose some of the money and cancel the flights and drive. It’s a 24 hour drive, over a span of 2 days for us. I know the car ride would bring on some stiffness, but I’m concerned that flying could be worse. I don’t know what to do.
Yes, Dr. Brown talks about how air pressure can affect arthritics in the book. There is no explanation yet as to why this might happen for rheumatics, but it’s certainly true that flying can cause dehydration, so drinking lot of water while flying might offset this. I’ve flown a couple times and drank water all through the flight and didn’t have any ill effects. I think Linda is right that a 3 hour flight is far preferable to a really long drive. That’s exhausting and you’d probably be worse off than if you’d flown. My doc just told me to wear support hose while flying and to get up and move around whenever possible. 😉
I’m finding that I’m just not anything like my former self anymore. Went to a cookout last night, and I’m just not as social. I just kind of sit there and watch everyone else, like an observer….sigh.
Yea, this is pretty normal, Ariel. You’re not alone in feeling this way. RA and other rheumatic diseases have a way of making you feel vulnerable, tired, disengaged, sad, low in self-esteem, and just not yourself. As you begin to improve, these symptoms should also improve. Hang in there!
Maz,
Thank you for the additional information on Lyme. I will ask my GP about the standard tests at my next visit.
I will plan to stick with flying to FL. I had read the book and didn’t recall information regarding flying. Thank you for pointing that out. I will go back to the book and look that up.
I appreciate your continued feedback and encouragement. While I’m currently experiencing worsening symptoms, I take comfort in knowing that the medicine is working as it should.
Thank you so much!
@Ariel wrote:
I will plan to stick with flying to FL. I had read the book and didn’t recall information regarding flying. Thank you for pointing that out. I will go back to the book and look that up.
Hi Ariel,
The book just covered how arthritics are affected by air pressure changes, but not flying specifically. 😉 Funnily enough, I have noticed I sometimes feel worse when a storm is coming in (especially when humid), but this isn’t always the case either. There’s no rhyme or reason to it. 🙄
Woods1977,
Thank you for your reply.
I’m a little anxious about flying, but I know it would be better than driving for me.
Dr. S changed my meds from 100 mg/2x/day everyday to just MWF. In addition, I’ve gotten myself off of the Celebrex (which is known to contribute to swelling). I’m trying to just take Tylenol as needed. So, I’m hoping I will see some relief in my ankles/foot. Yesterday I tried to walk at the mall, and it ached the whole time. I didn’t last long. I know that I need to exercise without overdoing it. It was pretty discouraging to say the least. I’m realizing that I will be in a wheelchair at all of the Disney parks. I don’t think I’d be able to walk far at all.
The depression is difficult. I was never a cryer, and now I can cry instantaneously 🙁 I’m trying to visualize “REMISSION” on a regular basis and doing my best to think positive thoughts. Some days are better than others.
Thank you all for your support. I can’t begin to tell you how much it means to me.
Ariel,
I might be late in answering but, a wheelchair at Disney is a very good idea. I’ve done it and it really will help a lot. In general, most people get annoyed and even nasty with ‘slow’ people – unless they are using a cane, crutches, or a wheelchair. Use one and and have a wonderful time!
Thank you for the heads up on using the wheel chair at Disney. I’m walking a little better, but I know I wouldn’t be able to walk around that much on any given day. I know this will be a much different experience than I had originally planned, but I also accept that it’s necessary right now. I am looking so forward to time with my family.
Thank you for the kind words.
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