Guest guest Posted April 6, 2001 Report Share Posted April 6, 2001 Cindi, I'm so sorry to hear of your relapse following returning to work. I had similar experience when I tried on three different occasions to return to fulltime work, culminating in a fall on a business trip which herniated a disk and put me in rehab for my back for over a year. I finally gave in to my doctor's urgings and applied for disability which I got last Sept. and have been home ever since. I know it is really hard to give up on work, at least temporarily, and for most of us a financial struggle. But I really believe my body was frantically trying to get me to pay attention so that I would stop trying to work and concentrate on healing full time. I do agree with you about there being one underlying disease causing all our various symptoms. I think the latest research showing the disease coming from the Central Nervous System and impacting the HPA axis is correct. I have had several tests during this last year due mostly to my accident that show abnormalities in the brain, which tend to confirm this theory for me. I'm doing neurological chiropractic work now to try to normalize my brain functions. Anyway, my sympathy is with you and I hope you will be able to slow down again and concentrate on healing. Be well - Jennie Date: Thu, 5 Apr 2001 15:55:22 -0700 From: canderson@... Subject: relapse An update for those who were following. I was working half time at a relatively easy job, and taking heparin and doxy, and doing really well. I felt 99% normal. But I started back to work full time about 5 weeks ago and I've been going downhill since. Especially my cognitive function. Not sure if it's the working, or the fact that I had to back off on the antibiotics to work, or other things I've done (added some supplements, decreased others, had fillings removed in January.) I am trying to figure out what it is... It is very difficult to come to terms with as I finally thought I had found the secret. But I had been better before for 18 months and then got sick again. Lately I've come to believe that we can solve symptoms and feel " better " but until we figure out what is wrong with the immune system in the first place, something else eventually comes along to cause new symptoms. I used to believe there were many different illnesses classified under CFIDS, not just one. But I now believe there is one primary illness, and the many variations are just the way the particular body is affected by the illness. I'm not saying 100% of us have the same primary illness, but I belive it is high. I still firmly believe in the hypercoagulation and mycoplasma treatments. I just think it's one piece of the puzzle. Peace Cindi __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2001 Report Share Posted April 6, 2001 I concur in that this seems to be an illness that is embedded in the the brain. Jay Goldstein may or may not be right in his assessment of a limbic system disorder, but if you consider the functions of the limbic system and compare it to our symptoms there seems to be a high correlation. We can address some/most symptoms therapeutically and gain much benefit, but until the underlying cause is found or addressed we will most likely always be subject to flares. > I do agree with you about there being one underlying > disease causing all our various symptoms. I think the > latest research showing the disease coming from the > Central Nervous System and impacting the HPA axis is > correct. I have had several tests during this last > year due mostly to my accident that show abnormalities > in the brain, which tend to confirm this theory for > me. I'm doing neurological chiropractic work now to > try to normalize my brain functions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 Marty, I'm one of many who took the treatment and then relapsed. It sure happens. I relapsed 4 months after 6 months of treatment in 2000. My doc is not deterred by that. It's just taken me this long to be able to afford to do it again. My doc tells me my chances are as good as any one elses. This round of treatment, due to start any day now will last 48 weeks and will be with the Roche drugs this round. I have Medicare and they now cover the cost of the drugs. SharonMarty <mrb208@...> wrote: anyone here gone through the treatment and then relapsed? how did you deal with it and are you going to do treatment again? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2010 Report Share Posted November 20, 2010 Hi fliss, After a shock such as an accident is is a good idea to increase you adrenal support for a short while- until youare over the shock. > thyroid treatment > From: fliss.peck@...> Date: Sat, 20 Nov 2010 09:42:34 +0000> Subject: relapse> > Hi there,>.> I am on 5 NAE and 2 nutri adrenals a day...all i can think is i had a car accident last week and the shock and stress of it all, having to rush around looking for new car too, may have affected my adrenals? I have been having awful aching limbs too... what does all this mean?> what should i do?> Help!!> Thanks> Fliss> > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2010 Report Share Posted November 20, 2010 On Sat, 20 Nov 2010 09:42:34 -0000, you wrote: >all i can think is i had a car accident last week and the shock and stress of it all, having to rush around looking for new car too, may have affected my adrenals? I have been having awful aching limbs too... what does all this mean? >what should i do? Do you have any HC or HC cream that you can use to stress dose for your adrenals?? Those sounds very adrenal symptoms. you need to find out why you can't increase the Erfa any further, does temperature drop when you do?? if it does that is adrenal Are you spreading that dose out through the day or taking it all at once?? Have you had any iron labs recently?? low iron can cause all sorts of intolerance symptoms Nick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 MODERATED TO REMOVE MESSAGES ALREADY READ. PLEASE DELETE THESE AND LEAVE JUST A SMALL PORTION OF WHAT YOU ARE RESPONDING TO BEFORE CLICKING 'SEND'. ______________________________________________________________ Thanks for replies..I had already upped my adrenal meds after accident...don't have hc cream..where can i get some? Have been having the joint pains since cold weather...is it related? I tried to decrease ERFA and felt much worse so back to 2 and a half..taking 1 and half in morning and one on afternoon...is that right? Will try to up again quarter of a dose in a few days and check temp. Fliss > > Do you have any HC or HC cream that you can use to stress dose for > your adrenals?? > > Those sounds very adrenal symptoms. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 by the way i am taking high doses of iron to up my ferritin from 22 in sept... > > >all i can think is i had a car accident last week and the shock and stress of it all, having to rush around looking for new car too, may have affected my adrenals? I have been having awful aching limbs too... what does all this mean? > >what should i do? > > Do you have any HC or HC cream that you can use to stress dose for > your adrenals?? > > Those sounds very adrenal symptoms. > > you need to find out why you can't increase the Erfa any further, does > temperature drop when you do?? if it does that is adrenal > > Are you spreading that dose out through the day or taking it all at > once?? > > Have you had any iron labs recently?? low iron can cause all sorts of > intolerance symptoms > > Nick > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 On Fri, 26 Nov 2010 12:32:49 -0000, you wrote: > by the way i am taking high doses of iron to up my ferritin from 22 in How high is " high " It can take a long time to bring ferritin up when you are hypo and be difficult to treat hypo when you have low iron Nick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2011 Report Share Posted June 6, 2011 Alice, The first thing is to get FISH redone to check whether TP53 is missing. FCR may not be indicated after such a short remission. Possibly one of the TK inhibitors might be more useful in a clinical trial. Terry Hamblin MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2011 Report Share Posted June 6, 2011 Hi, I wrote about a week ago*, but didn't get any responses. I wonder if the docs could weigh in. My husband is relapsing. He was treated with FCR from January-May in 2009, and it seems to be roaring back in the last three months. Last time it was high WBC's, severe fatigue, and enlarged nodes and spleen. This time, it's very enlarged abdominal nodes and spleen, and little evidence of WBC's in the blood. Platelets are a little low, Hgb is very low (around 8). He is fatigued and has some abdominal pain. He had a CT scan last week that showed the very enlarged nodes and spleen. He was part of a clinical trial with customized vaccine several years ago at OHSU - Genitope - but they ended the trial early and while it may have slowed down the white count rate of increase, it didn't have any lasting effect. We live in Oregon and will be going to a CLL specialist at Oregon Health Sciences University in Portland. We have a good local oncologist. Any additional thoughts would be greatly appreciated. I follow this list-serv conscientiously. Thanks. Alice */message/15211 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2011 Report Share Posted June 6, 2011 I am not a expert at all but I have had a huge spleen and I mean big! The only thing that helped me from going downhill constantly was Cal 101! Have you tried that? Alice wrote: /message/15270 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2011 Report Share Posted June 8, 2011 Alice, I am sorry to hear about your husband. One concern that should be looked into is the rapidity of the return of the CLL. If it really has been so quick, it is probably a good idea to obtain a PET scan to rule out a Richter's syndrome. Spurgeon at OHSU is a great person to see. There are many options including CAL-101, PCI-32765, etc. that are worth exploring. Rick Furman Alice wrote: /message/15270 Quote Link to comment Share on other sites More sharing options...
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