Update - don't go to mayo.

[Guest]

Hi, I've been away b/c I've been too sick and was out of town. I had my tonsils removed monday and I'm shocked at how much pain I'm in. The oxy. is only bringing it down to about a 5 and I'm still having a hard time getting any sleep b/c of ocd. Last I tried to eat, I threw up quite a bit, so I'm hungry too.

 

I went to Rochester to Mayo clinic to see a neuro-immunologist. Before I even came he had made up in his mind that it was depression after speedily reviewing a few records even though I brought all of my records organized. Every question was if my family had depression and I talked about the year I was bedridden unable to even lift my head b/c of deathlike fatigue and he said, "were you depressed?"

 

So when all was said and done he wanted me to: see a psychiatrist, see a urologist, and take CFS classes on managing my fatigue.

 

#1. I refuse to see another psychiatrist ever again. I've BEEN DOING THAT FOR THE PAST DECADE. My psychiatrist referred me b/c in 10 years NOTHING has helped. The mayo neuro claimed I was "treatment resistant" - I really hate that phrase, why not look for physiological causes instead of shoving more pills down my throat?

 

#2. The urology dept. refused to see me. One of my ocd things is writing things down so I couldn't do a voiding diary. I tried to explain the ocd and they were really rude. I've seen tons of urologists at some of the best centers in florida anyways..............

 

#3. They wanted me to fly back 6 months from now and take some classes on managing fatigue. I think after 6+ years, I'm well aware of how to manage the fatigue. Was the doctor not listening when I told him that if I take a shower I have to lay back in bed b/c the post exertional malaise is SO BAD!?

 

#4. He was a so called dysautonomic specialist, this is part of why I went, I have horrible POTS. He said it was b/c I'm inactive and lying in bed and left it at that. (the truth is, it started up when I was active and hiking then passing out in the woods on walks).

 

WITH ALL THAT SAID, I have an appt. with Dr. Najjar in 2 weeks. Please send out positive thoughts and prayers my way. The flights nearly killed me, at one point on the plane I thought I was dying. Everything I do causes more and more fatigue and the motion from plane made me throw up. Dr. N's receptionist said he reviews all records before taking on patients so I hope that is a good thing..... that something stuck out to him or he thinks he can help or worth a try.

 

Insurance covered mayo's appt but is not covering Najjar's. I'm worried about any tests that will be run as my mom and I don't have much money. We will try to get things covered post nyc. One thing is I've never had a lumbar puncture and I keep worrying about how much that will cost. We are trying to do what we can with insurance right now. Anybody have any tips in regards to showing up without insurance coverage, how tests will and can be covered?

 

Thanks everyone for your kindness and friendship.

Thanks to @trintiybella for you message. And powpow - for your continued support. Juliafaith.

[lfran]

With my insurance, tests are covered even when ordered by a non-covered doctor. Find out who your preferred provider labs are and ask the doctor to sent the test requests to them (ie, Quest or LabCorp, etc, rather than his hospital lab, unless you have verified that the hospital lab is in-network).

Best of luck! It's wonderful that Dr. Najaar is going to see you!

 

Have you considered travelling by sleeping car on Amtrak? They have deals all the time, and maybe if you explain your situation they will have some kind of medical-based fare. That *may* be easier than flying, but will of course take a lot longer and will probably be more expensive. A regular coach seat is much less money, and will partially recline, but may not be comfortable enough for a long journey.

[Agnes26]

I had my tonsils out this summer and couldn't take narcotics. They gave me panic attacks. Tylenol didn't touch the pain. My doctor OK'ed ibuprofen and it was a Godsend. It was a full two weeks of pretty intense pain, though. Keep your fluids up. I ate a lot of crushed ice. Good luck with your upcoming appointment.

[Guest]

Thanks. I actually can't take ibprofen - it revs me up and gives me insomnia and other weird "rare" side effects.

The aspirin and oxy are fine but make me a zombie. Can't wait till this is over. I really hope it doesn't all affect my singing voice either.

 

I'm going to try ice-cream soon as it's been a few days of coconut water.......

[JuliaFaith]

Sorry, do not know about the doctor visit info. Glad to hear you had tonsils removed. They were described as a "bottleneck for bacteria, viruses etc." so you are moving in a positive direction for healing!

 

When my son had his tonsils removed, the doctor recommended the following for sore throat (not sure if you can take any of these):

 

Slippery Elm lozenges

Throat Coat Tea

Homeopathic Mercurius 30 C: 3-4 pellets up to every hour while awake for pain. DO NOT USE this if you have amalgam fillings!

 

"Broths, smoothies, protein drinks as tolerated. Well cooked and pureed soups and stews can be a good way to get minerals and healing nutrients including electrolytes and protein to keep your energy up as you recover."

 

Best wishes with Dr. Najjar!

 

Take care.

[qannie47]

I am sorry that you had such a disappointing experience at Mayo. I experienced much the same at Children's with my DS. Did you inquire about the Pandas? There is nothing more discouraging then having hope that is crushed by the professionals that we depend on. What I don't, will never understand, is why a doctor will give ten minutes of time to a life time of ailments. I have heard good things about Dr. Najjar, so I think you may find yourself in better, more compassionate hands....Best of Luck, and don't give up!!!

 

I used to love to watch Medical Mysteries on TV, and was stunned with the stories about people who went through years of pain, written off by doctors, and then eventually, one day, it takes One doctor who takes the time and has the answers and sets their life back on course. So Keep the faith.

[T_Anna]

So disappointing. Good luck with the T&A recovery and your appointment with Dr.N.

 

T.Anns

[rowingmom]

Why have you not throughly investigated lyme and coinfections?

 

http://www.drjaller.com/

 

 

"Some of my patients have: fibromyalgia, chronic fatigue, headaches, multi-system disease, and metabolic disorders including obesity, neuro-endocrine disorders such as POTS, immunological disorders and psychological issues."

 

These are all disorders caused by lyme and coinfections, especially bartonella and babesia. Not just lyme alone.

 

Best of luck with Dr N, but often the mainstream doesn't understand that these issues are frequently caused by infection which first needs to be properly identified and then treated.

 

 

Edited October 31, 2013 by rowingmom

[Guest]

Why have you not throughly investigated lyme and coinfections?

 

http://www.drjaller.com/

 

 

"Some of my patients have: fibromyalgia, chronic fatigue, headaches, multi-system disease, and metabolic disorders including obesity, neuro-endocrine disorders such as POTS, immunological disorders and psychological issues."

 

These are all disorders caused by lyme and coinfections, especially bartonella and babesia. Not just lyme alone.

 

Best of luck with Dr N, but often the mainstream doesn't understand that these issues are frequently caused by infection which first needs to be properly identified and then treated.

 

 

Already been there and done that. Years of abx even antivirals. Constantly got c-diff and other infections with my bladder as a result.

When recently put on abx for my throat and tonsils got: uti, yeast infection, and c-diff again and that was with flagyl and tons of probiotics. Was on long term abx didn't help. Have had lots of friends misdiagnosed with lyme, gone through treatment, didn't help. I don't think it is the cause of everything and I don't think it is the cause of dysautonomia - 95% of CFS patients have some form of dysautonomia, most of them got sick with viral trigger........CFS is a mixture of auto-immunity, inflammation, CNS damage, and chronic infections - merely treating the infections hasn't gotten us patients anywhere / most effective treatment dashed by FDA "ampligen". I was willing to work with Dr. T on infections but I never heard from him again when I ended up in ER due to side effects from valtrex.

 

We are moving on and not looking back (my mom has 15+ years experience as RN). Had very bad experiences with both LLMD's and I go by intuition, it wasn't a fit. I left mayo early b/c of the intuition. That is all, I would prefer not to discuss it.

Edited October 31, 2013 by Guest

[Guest]

So disappointing. Good luck with the T&A recovery and your appointment with Dr.N.

 

T.Anns

Thanks, it's quite painful, did not expect it to be this bad. And I'm soooooooo hungry. @juliafaith has some great suggestions on teas (my brother suggested as well) and food. Mom's going to find some tea to soothe my throat...

[melanie]

Just wanted to let you know we have been seeing dr. Najjar for 2 yrs and I couldn't say enough wonderful things about him or his staff. He's got a great bed side manner and has helped so much.

[tpotter]

Just a recommendation for working with Dr. N. Don't suggest what it could be. Just tell him all your symptoms, everything you've tried, that you're desperate for his help to get to the bottom of it all. He really is a wonderful doctor. We only stopped working with him, because my son was doing ok, and we moved on to holistic treatment, which for us, has worked great. But, I think you will be in very good, caring hands with Dr. N. But, just let him try to solve the mystery. And, I'll keep you in my prayers.

[Guest]

Just a recommendation for working with Dr. N. Don't suggest what it could be. Just tell him all your symptoms, everything you've tried, that you're desperate for his help to get to the bottom of it all. He really is a wonderful doctor. We only stopped working with him, because my son was doing ok, and we moved on to holistic treatment, which for us, has worked great. But, I think you will be in very good, caring hands with Dr. N. But, just let him try to solve the mystery. And, I'll keep you in my prayers.

It's good advice, and I'm going to take it. Thank-you.