New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/30/2008 1:10 PM (GMT -7)   
I saw the Mayo ortho who was ready to suggest some limited surgery on my lower back, but surprised him by being out of the walker, standing up straight and in a much better mood! I explained to him the TB tx drug had helped me so much. Then he replied "you know you can get that in your spine" and I asked for a spinal tap. He said he couldn't order it and the Mayo infectious disease guy is gone and had previously flat out refused to do it. The ortho felt that due to the incredible results I had it might be warranted and the doc might change his mind. I had scheduled with a female infectious disease doc at home who seemed to be very caring, but she also seemed reluctant to do any diagnosing. She didn't see me when I was really sick though.  I'm really tired, disheartened, and frustrated. Its like the gold ring is there but I just can't get it. She feels that since the isoniazid is working well, I should just go with that, but without knowing the scope or type of the infection for sure, it may not go away. I don't know why docs deny these diagnostic tests to their patients, when they would more easily give out serious drugs. It's just frustrating. I am feeling so much better with the infections going away or gone in some cases. I wonder how much of my ill feeling really came from any autoimmune disease and how much came from infections brewing that just weren't going away. Sorry to vent.  I just feel ready to collapse back into hopelessness.  The walker sits in a corner of my room, reminding me of where I was before I started the TB treatment.  Also, I've been coughing, but she wouldn't test sputum, offered chest xray instead, which is not definitive. I wear a mask now and avoid everyone. My eyes are even better and gold rings in iris gone!
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/30/2008 3:44 PM (GMT -7)   
(((((((( Marji ))))))))

Store that walker somewhere else!!! LOL . . . I wouldn't want to look at it either!!

It sounds like you are making remarkable progress. Would the meds you are taking treat the issues that would be discovered in the tests you'd like to take??? If so, maybe they just want to let the meds do their job.

I could see where you'd want to see exactly what it affected (or not affected). I hope, being that it is Mayo docs, that they are really on this for you!!

Thanks for the update! I hope you continue to progress!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/30/2008 6:42 PM (GMT -7)   
Marji,
   I'm glad to hear your a little better with the TB treatment. I hope they will do the Spinal Tap for you soon.
   It is a good feeling when you can put the walker away..... :-) . I still have mine but its not where I can see it.
   I hope you continue to improve with each passing day. Hang in there and keep us updated. You are in my thoughts and prayers.
                                                              Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/30/2008 6:54 PM (GMT -7)   
Thanks, Rosie. The tests would confirm whether additional problems were caused by disease, and then they would prescribe three additional antibiotics, which is the protocol.  By not investigating this, it might go into a dormant state and reemerge and I will continue to go through what I've been through for the last 15 years of slowly progressing insidious damage and an accumulation of many different disorders.  It would also allow them to determine if it is the antibiotic resistant strain that the man on the airplane carried. Knowing the strain helps them treat you better. Part of the reason I'm in the mess I'm in is because I just was satisfied with feeling better and never made sure I got a good dx. I don't know why many docs are so reluctant to dx. I've waited so long and done everything they asked. I just wish they'd run a few good tests and put this to bed.  Thanks for listening Rosie.  You are so sweet and supportive. The nurse today suggested I write the whole thing down. Maybe I should.  It seems like it might be depressing, writing about my illness and trials with docs and life and all, but it might help someone going through it and maybe help me. 
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/30/2008 7:04 PM (GMT -7)   
Thanks Babs. Maybe I need to put the walker in the closet. I still use it at places like the mall or Mayo, where you have to walk so much. Whats frustrating is that they tell me I'm going to end up in a wheel chair because of my back, but wont do a spinal tap to see if there's an infectious agent at work there. I never expected getting well to make me feel so anxious. I just want to be well tomorrow, you know? And the more I push them about infection, the more they tell me I have autoimmune disease and they don't know why stuff is happening to me. But they won't find out either, its just easier to say AI disease. I'm sorry to be so down. I need to have more faith. After all, I finally got this far, and you've given me great info in past posts for alternative tx. I hope this medicine isn't making me flaky. Thanks so much, you and Rosie for being here and being so kind. I'm worried about the next five years the way I was going. My liver life prognosis was twenty years fifteen years ago. I was really getting bad. I just want so bad for this to fix things. Well take care and I hope you are both doing okay.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 7/30/2008 7:29 PM (GMT -7)   
(((( marji )))) I am glad to hear you are doing better with the TB treatment plan. I agree with Rosie, put that walker away, you are doing great and don't need it anymore!!!! I pray you continue to feel better each day! Take care and keep us updated!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/31/2008 2:49 AM (GMT -7)   
Marji,

Do you have a brother, husband, father, sister, friend who is WAY supportive and might advocate for/with you at the doctor's appointments??

It would be helpful to know if they won't do the test because the risk is too great or because they are ignorant in your situation . . . or they feel the insurance co won't pay for the testing, etc.

Once, I wrote a letter and mailed it to my doctor. I told him I was sick and tired of being sick and tired . . . and he actually referred me to another doctor in his practice and things improved a LOT. So make sure these doctors clearly understand what you want. Men don't read between the lines so you have to be very specific. . .and if you are positive you want these tests . . . make sure your request is not a question . . . it needs to be a statement.

Just a thought.

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/31/2008 5:53 PM (GMT -7)   
(((((Marji)))) I agree that the whole medical field can be very frustrating - how they diagnose (or don't diagnose us, and what tests they order and whether they believe us, etc, etc.

I am glad to hear the TB meds are working so well. I had no idea it could affect your spine. You've just got so much going on that I think it warrents docs really taking a lot of time and looking closely at a lot of different things. Hang in there and take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/31/2008 9:25 PM (GMT -7)   
Thanks, sometimes I wonder if some of us really just aren't getting the right diagnostic stuff done. Lots of what they see in cases of TB are extreme, with people in third world countries that don't seek medical attention until things are horrible, and that are not nutritionally in good shape, or people with aids. I will have to put together a letter if I don't hear something. I can write to my liver doc or endo at Mayo too. Maybe the infectious disease doctor will sit back and plan a series of tests for different things which would be great. Staph and other gram negative bugs or viruses can be problematic too and just because I'm getting better on isoniazid doesnt mean that all the problems were TB related. Thanks for the help. I just didn't think latent TB could cause so many problems, but the whole reason you don't get sick is that your immune system keeps it in check throughout your life, so that must be hard on the immune system. And TB is so hard to kill without the right drugs because it has a waxy coating around itself and then with time calcifies, which is why they find it inside calcified lymph nodes and sarcoid tumors, also it might be hard to see in the spine. She did ask me about ticks and eating game, which we do from time to time to supplement groceries.

Well, thank you both. I need to write this down, and also maybe write up an article about my "fears" and theories about latent TB and other unresolved infections being damaging. I think it would be a good thing, putting all this together from a patient perspective.

Thanks again you guys and I will start drafting something in writing and I will need to hear from the infectious disease doc and find out what she wants to do.


Thanks so much.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/31/2008 10:14 PM (GMT -7)   
I have a detailed thread on eforums TB forum with replies from Ask a Doctor. Their Ask A Doctor forum is open and available and free and a good doc replied to my questions and spent a lot of time with me. For those that need an Ask the Doctor service for free, the eforums has a lupus and other forums that all can be used to access the free Ask the Doctor service. This might be helpful to others who need this service and I don't know how to let people know. Maybe you guys could help. So many such services charge, or they are closed due to too many questions.

Take care and thanks thanks thanks again.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 7:38 AM (GMT -7)
There are a total of 2,734,627 posts in 301,228 threads.
View Active Threads


Who's Online
This forum has 151346 registered members. Please welcome our newest member, heelm007.
291 Guest(s), 11 Registered Member(s) are currently online.  Details
Psilociraptor, Butterflake, JNF, Loutucky, LG13, pmm73, time2reclaim, ChickenArise, Traveler, Momtogigiandquinn, Snarf


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer