"ME" - Symptoms wax and wane ?

[xchocoholic]

Hi Listmates,

I saw mention of this on the thread concerning the new diagnostic criteria for ME. I didn't want to hijack that thread since it's already getting long. Waxing and waning was being discussed on page 10 ..

I've been totally disabled with ME/CFS/FM since 1990 and my symptoms have never waxed and waned as far as I can remember so I wonder if this is another clue to ME ?

Or is this another subgroup ? Or is this a sign of severity ? I appear to fit the new criteria exactly ... Started with virus, UTIs, URIs, etc etc ...

Oh but I stopped feeling like I had the flu 24/7 after I'd been sick about 7 years. And I can push myself without getting a URI whereas I used to get them everytime if I pushed myself.. I just get to where I can't stand up or move anymore .. lol ... These symptoms never came back so they didn't wax and wane.

I'll get all of my food intolerance symptoms (insomnia, myoclonus, twitching, IBS, etc etc) back if I eat foods that I'm intolerant or ingest chemicals. (And yes, I hate all this dieting crap too !! ) .

Really painful sore throats appear to come out of nowhere but a constant throat aggitation and post nasal drip has always been noted on physical exam. I always have a low bp, low body temp and blood in my urine too. OI (orthostatic intolerance) is there every single day and PEM post exertion is a given. Especially PEM brain ..

I had ataxia when I tried to walk everyday for 16 1/2 years. But that eent away in 2006 probably due to the gluten free diet.

So what kind of symptoms wax and wane ? None of my neurological symptoms did ... Headaches were constsnt in the beginning. I took diamox for years. But even after the nonstop headaches, I over did it I was guaranteed to get a killer headache. Hmmm.

Also, I have accumulated additional diagnosises over the years too. Recently added major seizure disorder (tonic clonic ?), Paget's and lung scarring ... is this "ME" ? Do we continually get sicker ? I don't feel nearly as sick as I did all those years prior to going on this diet tho.

fwIW. I have freinds who don't have ME who are seeing an increase in their health issues too. All of us are over 50 ...

Any ideas ? I wonder what these doctors are seeing ...

tc ... x

 

[xchocoholic]

Hi again ...

I didn't get any responses here and hope I didn't offend anyone or make them feel isolated. If so I apologize. I was the undiagnosed patient for 2 years so I understand the frustration.

However, now that I see how ME/CFS is being diagnosed, getting to the root of this and or sorting out the symptoms is a priority for me.

As I see it now, ME is just a group of symptoms. All defintions of ME are just that. And the only reason they've been cojoined is to make the doctors job easier. Not looking for causes of these symptoms has held us back for decades.

FWIW. I'm not trying to draw attention to my level of disablity or anyone else's. I just want to further define why we have symptoms one day and not another or certain times of the day. I can't understand how ME symptoms would wax and wane. We would never say that about the flu or food poisoning !! Maybe defining what's causing this would help us get to the root of ME.

I've been watching for symptoms that waxed or waned and found that for the most part, my symptoms are always there but if I over exert myself they become more severe. But over the last 6 years, I've identified various foods and chemicals that are guaranteed to cause certain symptoms.

Also, I got my ataxia back when I tried using Benadryl or Klonopin with sorbitol. Not sure if regular Klonopin would've done that or not. That's it though. So far now ataxia since 9/6 and it was there every single day everytime I walked.

PEM, or PENE now, means a day or two of rest unless I've been pushing for days, then it's a day of being too sleepy to function and taking multiple naps. On a bad PEM day, I'm lucky to remember my address ... lol .. I don't get worsening throat pain, increased myoclonus, ataxia, etc ... it's all about my body being too weak to stay up and therefore making me rest. I don't have any "flulike" symptoms either unless I try to push myself on a PEM day.

It's our immune systems that are reacting to an invader such as a food intolerance, virus, bacteria, etc not the virus, etc causing these symptoms ... So fixing our immune systems need to be a priority which the majority of which is in the gut.

My most recent theory on how I got ME is that a virus came along and wiped out my villi causing celiac disease. The NIH says that celiac disease can be caused by a virus but I never thought to google which one or ones. They also state that NSAIDS can also cause celiac disease.

Damaged villi allowed bad bacteria and fungus to grow out of control and create an inability to absorb nutrients from food. I carry the DQ2 gene and neurological problems from gluten are EXTREMELY common in DQ2s. My ataxia went away after 1 year gluten free so the connection for me is apparent .. That and those darn gluten antibodies ...

Hmm, most of us are gluten intolerant ... chicken or egg ? lol ...

tc ... x

 

[maddietod]

Hi, xchoc! I didn't answer because my symptoms are pretty stable too. Sometimes I'll have a general slide - long and slow - and then I have to quick get serious about whatever led to the slide (usually adding in a bit of exercise, or messing with my food choices). But so far I can pull myself back up to my normal.

The only change is that over the (25) years, it takes more to get back to 'normal.' This time I've gone on the methylation protocol and stopped taxing my adrenals AT ALL. This means no decaf tea and coffee, and very rarely any sugars or chocolate. My life is already very low stress.

Did you do a gene test? How does that work, and how useful is the information?

Madie

 

[justy]

Hi Xchoc, just saw your thread today. I once saw a letter to an M.E org saying that if symptoms where continuous then it was not M.E as it is a fluctuating illness that waxes and wanes. I immediately thought this must meen i didnt have M.E (i wasnt officially diagnosesd at the time) In reality it meant i was in a certain phase of damage/damaging my body which meant continuous symptoms with no re;lief whatsoever. 2 years later and i now can have the odd almost symptom free day so long aas i stay within my envelope for many concurrent days. My M.E doctor says this means i am in a healing phase.
I have had M.E for 17 years although i was only finally diagnosed 18 months ago. During this time i have ranged from mildly affected to severely affected into remmission and back to severe, now back to recovering and moderte with the odd mild day again.
Some symptoms flare up on a daily basis if i push myself or overexert (this can sometimes be by only a tiny amount) so i feel tht my underlying disease is still there in a way.

I agree that understanding the waxing and waning and even full remmisssions that some of us have had could provide a key to solving the puzzle. Dr Myhills work on Mitochondrial dysfunction go some way to explianing why symptoms would wax and wane and perhaps even how it is possible to get a remission as i did to near normal for years, and yet for me and others with long remmissions the illness has returmned -for me triggered by measles and pneumonia which would suggest to me an underlying immune dysfunction. I am also interested in the fact that those of us who have been fortunate enough to have remmisssions report an inability to increase stamina or reach fitness levels of healthy people even if we are able to exercise.
Justy.x

 

[xchocoholic]

Hi, xchoc! I didn't answer because my symptoms are pretty stable too. Sometimes I'll have a general slide - long and slow - and then I have to quick get serious about whatever led to the slide (usually adding in a bit of exercise, or messing with my food choices). But so far I can pull myself back up to my normal.

The only change is that over the (25) years, it takes more to get back to 'normal.' This time I've gone on the methylation protocol and stopped taxing my adrenals AT ALL. This means no decaf tea and coffee, and very rarely any sugars or chocolate. My life is already very low stress.

Did you do a gene test? How does that work, and how useful is the information?

Madie

Hi Madie

ditto on what causes symptoms to flare. At least from what I've identified so far. The new info on bacteria and germs has me intrigued .. as well as the reaction I'm seeing from eliminating ALL caffeine ..

25 years ... wow ... I hit the 21 year mark last January.

My life is low stress now too. In fact, I moved to the beach in June and am using it to help me unwind twice a day. I call it "beach therapy" ... lol ...

My GI ordered the gene test for me cause I wasn't tested for celiac prior to going GF. He found damage on my Endoscopy, 17 months post GF, but we wanted to be sure I really needed to avoid gluten. I found it helpful knowing that I have the gene because I can tell my family they may have it too and it helped reinforce my need to avoid gluten.

Of course now I know that you don't have to have the DQ2 gene to have neuro problems from gluten but the data to support that isn't all there yet. If interested you can google "theglutenfile" for more on this ... This file contains info that most docs don't know yet.

gotta run .. tc ... x

 

[xchocoholic]

http://www.fightingfatigue.org/?p=8314

Dr. Sarah Myhill: Roadmap for Dealing with Problems of CFS

April 9, 2010 by Sandy Robinson
Filed under ME/CFS


1 Comment


Dr. Sarah Myhill is a well-known UK fatigue specialist who has discovered that following certain fundamental rules may offer better health to those suffering from ME/CFS and other illnesses as a result of the ME/CFS. Dr. Myhill says about her checklist for treating the comorbidities of ME/CFS:


.I used to do things one at a time in order to see what does and does not work. I now do things the other way round treat everything I think to be important, get the patient better, then relax the regimen to end up with a balance between the patients wellness and the toughness of the regimen.

The following is the program of treatment I go through with every patient. If I try to cut corners, I often end up missing important problems. The patient who thinks about their illness and works out things for themselves has the best chance of getting better. I can point you in the right direction, but you have to do the donkey work!

Dr. Myhills Checklist: (Click the source link below to view the entire article and further information on each item in her checklist). Dr. Myhill says that you shouldnt go onto the next stage on the checklist until all the earlier ones have been fully explored.

Stage 1: Make sure the patient truly has ME/CFS
?Is the diagnosis correct? Have all other illnesses been excluded?
?Really think about what might have caused your CFS? Myhill says: this will give a guide to treatment. Think about the time building up to the start of the illness, what the trigger was, which illnesses run in the family?
?ME/CFS is a diagnosis of exclusion. Recent onset of symptoms which may be worsening would suggest serious underlying disease.

Stage 2: Observe Six Fundamental Rules

Pacing:


Adopt the 80% rule (which means: know what you are capable of in a day and do just 80% of that 20% is getting better energy).

Get enough mental and physical rest.

Get organized.

Accept help. Arrange for deliveries to house. Delegate work.

Prioritize: List the 10 most important things in your life, then ignore the last five. You cant do everything.

Sleep:
?Getting good quality sleep is crucial. Dr. Myhill says, Dont be afraid to use tablets to restore the normal day/night diurnal rhythm.

Supplements:
?Dr. Myhill says it takes about 6 months for body stores to replete. She says everyone should take a basic nutritional package of supplements daily. She says that for people with ME/CFS there are mitochondria support supplements that these patients should take.

Diet:
?There are two dietary problems often linked to fatigue: allergies and hypoglycemia. Dr. Myhill recommends the Stone Age Diet - it has a low glycemic index and avoids the major food allergens.

Avoid infections whenever possible:
?According to Dr. Myhill, At the first sign of a cough, cold or sore throat use vitamin A (not if pregnant), vitamin C, zinc, selenium and propolis [a substance produced by bees from resins with antimicrobial properties].

Do a chemical clean up:
?Throw out all of the scented items in your house, avoid sprays, polishes, aerosols, new paint, new carpets, and have the house well ventilated.

Stage 3: Fighting & Nurturing


The interventions below need to be done over and above all the interventions listed in Stage 2 above.

At this stage you should consider having the Mitochondrial Function Profile and bring into your recovery plan the nutritional regimen specifically designed to support the mitochondria.

Some interventions work for a high proportion of sufferers (B12 injections, magnesium injections, D-ribose, Coenzyme Q10, etc.). Do as many of these things at the same time as you can. By the time you have been ill for several years, more than one thing will be wrong you need to tackle them all at the same time to see improvement. The priority is to get well. Once you are better, these things can be knocked off one at a time to find out which is important. See Pattern of Recovery.

The maneuvers to try, in order of importance, are:
?Feed your mitochondria: See Mitochondrial Function Profile
?Pain: See Dr. Myhills Pain article on dealing and controlling pain.
?B12 injections. She says these should be tried at some stage.
?Correct hormone dysfunctions. These are usually the adrenal glands and hypothyroidism.
?Get intestional symptoms under control. See Fermentation In the Gut & CFS
?Birth control & HRT can actually worsen CFS symptoms so Dr. Myhill recommends caution when using these.
?Low dose antidepressants seem to work well on CFS patients. She says, Many CFSs do well on tiny doses of tricyclic antidepressants such as amitriptyline 10mgs, dothiepin 10mgs, trimipramine 10mgs at night. In these doses I would not expect much effect on depression.
?Chronic low-grade undiagnosed infection. See CFS Can Be Caused by Chronic Infection.
?Hyperventilation can cause fatigue. Often driven by food intolerance and low magnesium levels. Helped by relaxation techniques.
?Chemical poisonings: See Chemical Poisons and Toxins.
?Multiple Chemical Sensitivity: Suspect if symptoms better out of doors, better in the summer, better away on holiday. Do chemical clean up. Eat organic where possible. See Multiple Chemical Sensitivity (MCS) A Common Problem and Often Triggered by Exposure to Chemicals.

Stage 4: Considering Allergies
?Dr. Myhill says that if you are still struggling despite having tried all of the above information, and if you have honestly done followed the above properly, then your problems may be caused by multiple food allergies, chemicals and/or molds.
?She recommends getting mold allergy tested. Myhill says, Either by skin tests or by going abroad to a warm dry climate, ideally for one month, but two weeks may give you an idea. Make sure that the holiday house is chemically clean. I know it is not easy, but it is important.
?Desensitization: She suggests neutralization or the technique she prefers, Enzyme Potentiated Desensitization (EPD) for foods and possibly chemicals.

Stage 5: New Ideas


One of the problems with CFS is that it is a quacks charter! It is important to look at new ideas and treatments, but not before all the known treatments have not succeeded. Especially the psychological treatments should not be considered until the physical issues have been sorted.

 

[taniaaust1]

So what kind of symptoms wax and wane ? None of my neurological symptoms did

For myself its nearly all my symptoms 80-90% of them wax and wane.

If someone isnt quite living within the limits they probably should be, they can keep themselves in permanent flare and hence then have consistant symptoms.

There is also like a kind of "stable" state which is reached when one is balancing their life out right for the degree of their illness... you get to a point in which the symptoms you have, are like just sitting there and never really change much The symptoms I have which never go away and always are sitting there (thou in my case they do get worst too if i push) are things like my memory issues, BP dysregulation, low cortisol, the IBS.

Those are issues I always have which dont seem to change as they always are with me but my others all really wax and wane. eg I get neurological stuff start happening if I do too much so go from a state of where I dont get that symptom to the state where I do. I have some days Im far sicker then other days.. the whole illness changes levels. (waxs and wanes) eg some days I can have tremors and spasms or headaches (due the exertional stuff otherwise its stable).

It has been said by some ME/CFS specialists that it cant be ME/CFS if it isnt waxing and waning (so take care something else hasnt been missed) .

The fact that symptoms come in or worsen after exertion... may also be called waxing and waning. Symptoms that come and go or shift and change.. worsen and improve. Symptoms that arent stable. I wonder some are precieving the defination of what waxing and waning is differently to others.

But even after the nonstop headaches, I over did it I was guaranteed to get a killer headache. Hmmm.

That isnt consistant symptom then, its shifting (waxing and waning)

 

[alice1]

I've had CEBV for 24 years now.I have waxed and waned during those years .What was surprising to me was there never seemed to be a consistant reason.I've developed nasty allergies and had to revert to shots.Nothing else was working from diet,over the counter meds,steriod sprays,you name it I tried it.The mites are my main problem because they love my eyes and make it impossible to do anything especially on damp days also when I researched the buggars it said they can make you feel quite bad..and they did.I started shots and they were working .fantastic!!I also have other allergies
so I decided to do shots for them.HUGE mistake.Put me on the sofa for 4 days.It's a balancing act for my immune system.It topples when it's taxed.Sometimes knowing what will contribute to a crash is trial and error for me.My main symptoms are fatigue and brain fog.So it's back to shots for dust mites only.Also being gluten free has made a difference.

 

[Sing]

I feel I have the same illness, or condition, every day of my life. Basically. What can give the appearance of waxing and waning are things like PEM, chemical exposure, etc.If I live within my energy envelope and follow all the restrictions and prescriptions for my condition, I can temporarily appear normal--say, sitting down and chatting with someone for a brief visit. But, put me to a test, or make me do any of a number of normal things, and you will see me get worse afterwards. I KNOW I always have the same condition, that the collar and leash or dog chain, so to speak, are always there. But if I just laze around the back yard and never go father than the end of my chain, you might think I was fine and that my symptoms were remitting.

It may be different for others of you who have real remissions, and can all of a sudden do stuff you never had been able to. I frankly question whether that is ME. So I am on the other side of the general opinion. But maybe I shouldn't use my experience as setting the standard, but simply say, this is what it is.

Maybe there are different subgroups. There are definitely differences in how "waxing and waning" might be defined.

 

[Sallysblooms]

Birth control & HRT can actually worsen CFS symptoms so Dr. Myhill recommends caution when using these.

Bioidentical hormone correctly tested and balanced help in so many ways including sleep!

Correct hormone dysfunctions. These are usually the adrenal glands and hypothyroidism.

Odd to add this, after the first thing. You have to have a great doctor that understands it all. I am tested twice a year and have had great help with all hormones as well as all other things that supplements help.

 

[alice1]

Sing I wanted you to know that even though I have better days I haven't had a normal day in 24 years.Sometimes I can remember what that feels like but it's fleeting.
My fatigue and brain fog are in degrees..but always there.
Sorry if I made you feel like the chain was yours only..it's not.
xchocoholic where's your beach?a very wise move.

 

[ramakentesh]

My symptoms relapse and then remit. Very autoimmuney and I have a comorbid autoimmune illness that developed at the same time as POTS.

problem with B12 is that its a competitive scavenger of Nitric oxide - and some POTSies have too little NO rather than the opposite.