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Post by nyxie63 on Jul 18, 2008 19:00:28 GMT -8
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Post by LymeEnigma on Jul 22, 2008 15:21:47 GMT -8
I'm going to have to take a closer look at that article when I can. I'm a big fan of CBT; it is one of few things that has kept my OCD from completely taking every bit of quality out of my life....
Interesting that it might have an effect on CFS. I have implemented CBT tactics in my pain management in the past, and it has greatly affected the way I perceive and tolerate pain. I am not quite sure how that might apply to chronic fatigue, but I guess chronic fatigue can be quite painful, as well.
I will read the article when I really can concentrate on it; right now I'm sitting here with dilated pupils, straining to see through dark glasses, as I recently got back from the optometrist....
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Post by LymeEnigma on Jul 24, 2008 9:10:30 GMT -8
Very interesting article, Nyxie! One thing struck me as I read (bold mine):
"Chronic fatigue syndrome (CFS) is defined by a person having severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and having four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue."
And doctors are just happy with leaving this as an anomaly? If there are swollen lymph nodes, surely there is either an infection and/or something autoimmune going on, right?
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Post by enochroot on Aug 20, 2008 17:02:24 GMT -8
Revisiting the experiment - unintentionally!!!! I had my second epidural today for the neck disc - was looking online about side effects and noticed the comment "transient suppression of the immune system".... THEN I looked at my notes about the first injection (June 4) My relapse ramp up started June 20 - so it may have played a part, and I may just have sunk my chances to go back to work with THIS one! (Was somewhat feeling better past three days).
Since the effect is immune suppression(cortisone) this may help establish to the docs - it is a suppressed condition - since if my problem was overactive immune system the suppression should make me "feel better".
I could not get the immunologist to order a CD57 test, but his other test showed a marginal CD3 count. (why I wanted the CD57!)
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Post by LymeEnigma on Aug 22, 2008 9:27:59 GMT -8
Enoch, please take care of yourself. I hope that you are able to return to work, but not at any further expense to your health. Were you able to discuss the effects of the injections with your doctor?
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Post by enochroot on Sept 2, 2008 15:40:56 GMT -8
Here it is Sept 2nd...Been a LOT worse the past 4 days! I guess the proof I feared... Seeing my GP tomorrow, and starting Glutathione injections next week with the immunologist.
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Post by LymeEnigma on Sept 4, 2008 10:31:02 GMT -8
Let us know what the GP says....
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Post by enochroot on Sept 8, 2008 13:59:59 GMT -8
Went to my endo (finally!) they botched my appointment last week (I had waited 2 months for it)- the office persons said "oh well you can see him in a month" - I wrote a letter to him as soon as I got off the phone, and mailed it from the post office so I knew he get it in a few days...His office called and put me in today He put me in for an adrenal stress test tomorrow morning at the local hospital - for what it's worth! I have : glutathione injections starting next week, and appt with a major immunologist (different one) and then in another few weeks my first try with a neurologist. Never say die~! Plus I am seeing a psychiatrist to help me prepare for a LTD claim - was told by the rheumatologist my mental state would get me more credence with them than my physical state. How sad is that?
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Post by LymeEnigma on Sept 8, 2008 16:56:49 GMT -8
I'm glad that your docs are continuing to pursue all necessary and available avenues. Will you know the results of your test tomorrow? Gook luck ... and I'm crossing my fingers that you finally get some answers!!!
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Post by nyxie63 on Sept 24, 2008 5:00:28 GMT -8
Enoch, Just checking in on your progress.
Btw, what's your opinion of the new immunologist so far? I'm considering going to one to figure out my various Immunoglobulin weirdnesses and not really sure where to start.
And oh yeah, been talking to a friend of mine about disability. She has brain cancer and still can't qualify for SSDI. Would be easier to get it if she were nuts, not brain damaged. That's just wrong.
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Post by nickeff on Sept 25, 2008 4:06:40 GMT -8
Yes, you will probably feel much better on low dose predinisone, but once you stop taking it you will likely rebound quickly. I took low dose predinisone for about a year, because my rheumatologist convinced me my Lyme symptoms were not due to on-going infection but instead were part of a "post Lyme syndrome." Up to that point I had been taking oral antibiotics on and off for years to keep the disease at bay (I have had Lyme disease since 1989, classic early Lyme disease undiagnosed for 2 years).
On low dose (10 mg/day) predinisone, my disease slowly progressed until one day I realized many of my large joints were constantly swollen, I had severe spinal radiculopathy/neuropathy with fasciculation of arm/leg muscles, irritable bowel disease, GI palsy with severe abdominal pain due to gastroparesis, and no short term memory with a significant cognitive deficit. In addition, I developed a severe sinus infection that was resistant to short term antibiotic treatment, and although it was puritic when viewed with a scope, the docs could not culture it.
At that time I went and found a Lyme literate MD, who put me back on antibiotics. I had such severe Herxheimer reactions I could only tolerate 50 mg/day of doxycycline in the beginning. It took over a year to get to where I could tolerate 200 mg/day of doxycycline. I have now been on IV claforan for 8 weeks, and almost all of my symptoms have resolved with the exception of the joint swelling. I have very large knee effusions, which I attribute to the years of draining and cortisone injections performed by my previous doctor. I have an appointment with an orthopedist for evaluation for possible synovectomy.
By the way, I had two spinal surgeries at C5/C6 and L5/S1, and I firmly believe Lyme disease causes disk disease/degeneration, but I did not get complete relief from the horribly painful associated radiculopathy until I received long term IV antibiotics.
Good luck to you my friend.
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Post by LymeEnigma on Sept 25, 2008 9:55:26 GMT -8
Welcome, Nickeff! I'm so sorry that you had such a terrible experience! We would all be a lot better off if the mainstream were able to accept the fact that Bb can be a chronic infection, despite treatment.
Thanks for sharing!
Enoch, I'm worried about you, man ... drop us a line to let us know you're okay, when you can.
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Post by enochroot on Sept 27, 2008 15:15:21 GMT -8
Nickeff - Wow! that's a heck of a story. My god what a trial... I have not been around lately - much has happened. Had adrenal stress test - came back normal so my endo says "see ya" Saw the head of immunology at HUMC (Hackensack University Medical Center) gave her my whole sorry run down, complete with all labs etc. She ran a new boatload of tests, still waiting on those. Been going to the first immunologist (a really great doctor and good man) who is giving me glutathione shots 2X a week at cost. My GP backed me up and filled out all the disability papers, but after the horror stories I have heard from my co-workers on trying to actually collect on this insurance we pay extra for, I have elected to take a stab at going back to work this Monday. I have been feeling better (or less bad) since the injections... Also could be the negative effects of the epidural cortisone shots fading - I declined a third even though they did help with the pain and numbness...Not worth the backlash! For Nickeff - I never got a pos Lyme test yet - 6 western blots over a year, plus the Central Florida Labs new test - all neg. I have never had any lymph node swelling, or any joint pain or swelling - the current crop of docs thinks its autoimmune or fibromyalgia... Only Dr C(lyme specialist and on the board of ILADS) still thinks Lyme. Me, I don't know WHAT to think Thanks to all (Nyxie, LE)for the concern and thinking of me - i think of you all as well ;D Just fell behind what with Verizon dropping the ball BIG TIME... Our phone line and DSL went out - Took them a WEEK to restore both. So I dropped them both. I enjoyed the "why did you leave us?" customer service call. They said "you've been a customer at the same address for 20 years" I said yes and you still showed indifference and contempt for that when you would not even START to look into my lack of service for five days...and then it took you three days to fix it!" Then they offered me the rest of the year free. I said "see? that's what's wrong with American companies these days - you should have made that offer BEFORE when you realized you could not restore my service in a reasonable fashion...Would have shown good faith - doing it now it's a cynical ploy - you only care when you see me actually walking away".
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Post by LymeEnigma on Sept 29, 2008 10:18:12 GMT -8
How ridiculous that you had to go a week without phone/DSL service, and that the company only offered to placate you after losing your business. That, it seems, is the American way these days.
I hope that the pending blood results are able to offer you more answers than you have gotten in the past. I am so sorry that you are going through so much. That just sucks. Thanks for checking in, though; I was starting to get worried, knowing that the cortisone shots had done such a number on you. Let us know when you get the blood test results.
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Post by enochroot on Oct 15, 2008 4:55:26 GMT -8
Into my third week back at work...So far so so! 3 hours a day commute round trip into NYC, twice weekly visits for shots. If I can keep going through that, something must be working better Into week 4 of the glutathione injections. Now comes fall leaf cleanup ( a huge brutal thing in my area).
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