THR Need a friend who has been on the other side of a late infection

[Maeve]

Oops!

 

[BarbieJ]

Thanks for the recommendation on the hotel. I called them and they charge $140 for you to have a pet. Since I am coming up often, I would not be able to afford that on top of the hotel price.
I just don't have anyone who I feel comfortable taking care of my dog when I go to Mayo. It's hard. I go back up on May 20.

 

[special lady]

Hmm....there's a number of hotels that connect to the Mayo..I know they're web page will link you to the list, there really isn't any bad hotels that actually connect to it, maybe just go down the list and call all of them to see if any have a cheaper pet fee.

By the way Barbie your pup is beautiful, I'm sure she's good therapy for you, and can put a smile on your face no matter what....those Boarder & Shetlands are brilliant dogs, and so loving...

 

[tashia]

Barb, I see today is the 20th. I hope all goes well. I'm sorry I haven't check in for a while, I have been so busy trying to get the apartment done so I can get a dog. I pray that this trip is successful and they find out whats going on. This must be so draining. Please take easy and when you feel up to it let us know how you are doing. Please take care my friend, Tashia

 

[tashia]

Hay Barb, How are you? I hope this finds you better than before. Please take care my friend. Tashia

 

[special lady]

@BarbieJ

Hi there Barbie stepping by to say hello, and see how your trip went at the Mayo?

 

[tashia]

Hay BarbieJ, How are you and that cute dog of yours? Had a very busy week doing sewing and getting ready for my new member of the household. Got the bed and the quilts ready so all I need is the food and a dog to love. I think about you often and every time I do I send you a pray. In time I know everything will work out just like it did with me. Take care and know I care. Tashia

 

[BarbieJ]

SAD
Mayo is done with me. Three MRIs, two X-rays, an EMG, a cortisone shot, a hip aspiration and lots of blood tests. All tests were normal. But I got cellulitis after my cortisone shot and this weekend I was in urgent care with a UTI. I also now have extremely itchy feet like I have athletes foot. I just looked it up and too many antibiotics can destroy the good bacteria on your feet as well as your gut.
I am walking better while I am on the ABX. The gabapentin is causing me to have photophobia and headaches as well as feeling dizzy and tired. I cannot titrate up another 100 mg, when I do, I feel like camping out in the bathroom with my head over the toilet.

I boxed up my classroom today. Tomorrow I will drop off my keys. I am just unbelievably sad. I am making a prediction. When I finish my ABX I will feel horrendous again and grow worse with each day. Something is seriously wrong. I still think I have a deep infection that is being masked by all of the ABX that I have been taking.
I wish I could post some better news. I just dread when people ask me about my hip. I just don't have one good thing to say. I want to survive all of this.
One good thing. I can eat! My gastroparesis that I was diagnosed with two months ago seems to be improving. I am eating a little bit of fresh fruit and vegetable. Tiny amounts, some lettuce and some watermelon, but so far no problems. Also the gabapentin has made me gain weight. Hope it doesn't put too much weight on though.

 

[tashia]

BarbieJ, Try to think positive. Right after my hip was done I felt the world was coming to a end and then I found this site. I really didn't think I was going to make it. I was so tired and hurt so bad because I didn't have pain control. Pain gets you so nagative and so overwhellmed with looking at the worse side. Well It took me me over a year and now its a pretty wonderful world. I believe I know what you feel but it does get better. Just keep moving forward and its ok if you need to lay down and take a nap and have a good cry. I am here for you so please keep me informed on how you are doing. I believe so you must believe it. Please take care my friend, Tashia Have you hug your dog today?

 

[special lady]

Barbie,

I'm so sorry you didn't get the answers at Mayo. I'll of course keep you in my prayers, maybe in time you'll start feeling better, or the problems will become clear to the Doctors. I'm so glad you went to the urgent care clinic, my past and present orthopaedic surgeons advised me if I feel the slightest infection of any kind to get to a physician right away. They both told me UTI's can easily spread to the joint. So I'm really glad your on top of your UTI, that's the last thing you need. I'm not familiar with gabapentin or ABX, what are they, and what are they prescribed for?

I recall you were teaching some youngsters, it must have been difficult for you to pack up and turn in your key. I also recall your daughter gave you a tabletop easel, are you one of those artistic people that I'm always so impressed with....maybe envious too! haha....everyone I've ever met that had the gift of any art have said it's therapeutic to express their feelings in their art. I'd love to see your work, if you can post anything you've done.

I'm really bummed the Mayo wasn't able to dx and give a solution. Don't give up though, like you said maybe the meds are masking the problem. Maybe it would be worth checking with RestAssured to find out how to go about requesting her treating OS in Texas....I know he reviews films, etc. Via mail, maybe it would be worth sending him a letter to him expressing your concern of ongoing infection, I'm sure RestAssured would be helpful in explaining the process and give you any information you may need. There's also Dr. Joel Matta in California that will review everything via mail, you have to call and ask for his assistant Terry to get the information on the precess.

I know with the way your feeling it can be difficult, but don't give up.

 

[RestAssured]

Barbie,

With you being on antibiotics so much, are you taking a probiotic? My ID doctor said is was crucial for people who are on long term antibiotics to take probiotics to put the good stuff back in your body. Make sure you take them at least 2 hours after the antibiotic though or they fight the antibiotic. I'm sorry you didn't get the answers you were looking for at Mayo. Try to stay positive.

 

[tashia]

Hi, I just came by to see how you are doing. When I worked I also worked with kids, I love working with them. I hope you are able to go and get some fresh air today. You are in my prayers. Have you hugged your dog today? Please take care my friend. Tashia

 

[BarbieJ]

Thanks RestAssured. I am taking a probiotic each day. I take it 5 hours after and 7 hours before my antibiotic. I wasn't even told to be on probiotics. Since I have a slow emptying in my stomach, I worry about that. Also I have decided to stay away from dairy almost entirely because I am on cipro. I am using almond milk. I feel lost and on my own. Thanks for the tip and please give me more since I worry that I may wind up getting CDif. special lady[/USER], I don't know if I went to the doctor soon enough since now that I have a condition called interstitial cystitis, I feel like I have the burning pain of a urinary tract infection every single day. It just got worse. I am very scared. I feel that things are spiraling down. My sister called yesterday and accused me of rushing to the doctors for antibiotics. That is not the case. I am waiting until the pain becomes unreasonable and unmanageable. I have had a number of normal urine cultures so this condition is truly a nightmare beyond belief when you have a hip replacement.
This morning it was so lovely so I joined my husband in a slow morning walk with our dog. I appreciate these walks so much now since I am losing my ability to walk when I am not on antibiotics.

 

[special lady]

Barbie, I know people aren't supposed to assume...but I'm going to in regard to your conversation with your sister. She loves you dearly, so although it sounds like she is blaming the condition on you for "rushing to the Doctors for antibiotics" it's a expected reaction out of concern, not understanding the condition, and frustration because she wants you to feel better. Again I'm going to assume, your feelings were hurt by what she said, and your reaction to what she said is almost identical to hers. You don't understand why your experiencing one thing after another, your feeling frustration because you want to feel better, and your concerned as well. This is so common among families until one decides to change "'re-actions" to a new way of understanding, and responses.

One of the better treatments for interstitial cystitis is with the use of DMSO, it's been used for over a hundred years to treat different conditions, the Mayo Clinic is even using it now. I'm certain if you Google the key words you'll find more information on it. Some GYN's are using a cocktail to treat it, and patients get a great amount of relief.

Although until you decide on which course of treatment to go with you will experience all or some of the difficult and discomfort that interstitial cystitis can cause, the good thing is it's not a bacterial infection so it will not effect your hip.

It is so good for you to walk and enjoy the scenery and weather. If you can do this a couple times a week, and gradually increase your walks, you may feel a lot better emotionally which will relieve some of the pain you feel physically.

Keeping you in my prayers, and hope soon to read your feeling better. Please keep us posted on how your feeling.

 

[Josephine]

I have had a number of normal urine cultures so this condition is truly a nightmare beyond belief when you have a hip replacement.

I still think I have a deep infection that is being masked by all of the ABX that I have been taking.

There is no real evidence that infections like cystitis cause peri-prosthetic infections. None whatsoever. All your tests, of both hip and bladder, have proved negative. I don't see any reports in recent posts that you have any symptoms in your hip, no pain and can walk reasonably well. Please correct me if I am wrong. But in spite of this, you see determined to worry about an aspect that doesn't exist. What ever it is that ails you, so far as I can determine, it's nothing to do with your hip.

 

[Jamie]

Barbie, here is a link to the Mayo Clinic's use of DMSO for interstitial cystitis. I'm curious as to why they might not have recommended it since this was the diagnosis. However, it would have been difficult for you to have it there, as the treatments are done every two weeks. Is there a local doctor you could discuss this treatment with for the bladder problems? It is a treatment for this condition that is approved by the FDA.

 

[tashia]

How are you today. Just drop by to say "Hi" Have you hug your dog today?

 

[BarbieJ]

Jamie, i have an appointment with my urologist in town on June 11. They do the DMSO.

Josephine, my hip pain gets worse with each week. It gets a little better when I wind up on an ABX. Then when I am off it continually gets worse with each day. I have sharp pain in my groin and on the side of my hip and down my femur. Also top of pelvis and bottom of pelvis. At times it is enough to about make me pass out. I have been on a lot of aBX in the last month, end of April for what the ER dr thought might be cellulitis and now for a UTI. Before that it had become difficult to walk even with a cane. I spend 70% of my day lying down because weight bearing, even sitting causes pain. It feels sharp and deep pain to the bone. Been on ABX and have deep pain still but not as sharp. I walk very slowly with a cane with difficulty. Until something shows up in an X-ray or lab what can I do? I thought I was in pain before my hip replacement. This type of pain s so much worse.

 

[Josephine]

I'm sorry, I missed all that. Well, the only advice I can give you is contact Dr broken link removed: https://dfwsarcoma.com/about/dr-maale.php in Fort Worth. If there is anything like that, he will search it out. You can send him your notes and xrays and he'll take a look at them for you.

 

[Jamie]

Barbie, here is another hip surgeon who could take a look at your case without you going for an initial visit:
Dr. Joel Matta - Santa Monica, California

St. John's Health Center
Orthopedic Center
2001 Santa Monica Boulevard, #1090
Santa Monica, California 90404

Specialties: Orthopedic Surgery and Hip/Pelvis Reconstruction, specializes in Anterior Approach

Clinic Phone Number: 310-582-7475
Dr. Matta's Contact Number 310-582-7473

You can contact Dr. Joel Matta and request that he look over all your films, reports, and a brief history written by you. He will review everything and give you his opinion and advise. If he sees a problem, he will likely offer for you to make an appointment with him and have him do the surgery, or go to whomever you preferred. He takes on complex cases, and is well known as one of the best revision specialist. He does not charge a fee to review, give his opinion and recommended treatment.