Life with a Dratted Disease, Part 2

Methodology

Photo from Wuestenigel

(Photo from Wuestenigel)

So, you have a Dratted Disease. (If you don’t know what that means, see Living with a Dratted Disease, Part 1.) Maybe you know what it is. Maybe you don’t and are still pursuing an answer to why you are ill with something that isn’t going away and what can be done about it.

Keep Notes

Keep notes about how you’re doing. I’ve known people who do this in a spreadsheet, or a word processing file, or a paper journal. Use whatever you’re comfortable using.

Notes will help you detect patterns in your DD and determine whether a change you make affects how you’re doing. Notes are especially valuable when a pattern or the effect of a change is subtle. It’s extremely difficult to spot subtleties from memory, but notes can make them discernable.

You don’t need to write volumes. Your notes might say “[date]. Monday. Migraine aura and migraine-like exhaustion but head didn’t hurt. Couldn’t think well. Messed up a lot at work.” It doesn’t sound like much, does it? But when you look back through your notes later, you might notice a day like that only happens following a day when you jotted that smog was worse than usual, or it only happens on Mondays and you realize Sunday is when you use a once-a-week special shampoo, or it only happens the day before your menstrual cycle starts.

Spectrum

We can look at DDs as covering a spectrum. Where your DD is on the spectrum profoundly affects the methodology you need for coping with it.

At one end, there are DDs understood by science to at least a reasonable degree and for which medicine offers treatment for at least a decent chance of improvement. Multiple sclerosis (MS), systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), and acquired immune deficiency syndrome (AIDS) are examples. People don’t “get well” from these diseases, but medications are available to moderate their severity or even suppress them.

At the other end, there are DDs which are not yet well understood and for which medicine is still groping for treatment. Fibromyalgia (FM) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are examples. Decades after these were named, effects are more or less cataloged but causation is still a mystery. There are no recognized treatments, so each patient has an individual quest to find something that helps them. It is common for doctors to shunt patients with these DDs aside, saying “it’s all in your head” (meaning, psychological).

In the middle are DDs such as chronic Lyme disease. Science knows the cause. If an infection with the bacterium Borrelia burgdorferi isn’t recognized quickly and treated strongly enough, Lyme disease isn’t fully eradicated and it settles in. When it does that, it becomes chronic Lyme which is devilishly hard to clear. Medicine has treatments to offer, but they aren’t always able to do the job.

Long COVID is in the middle too. Science knows the cause is infection with the SARS-CoV-2 virus. The breadth of what it can do is still being discovered. So far nobody has a recipe for treating it. It’s closer to FM and ME/CFS on the spectrum than it is to MS, SLE, RA or AIDS.

Shifting Along the Spectrum

DDs can move along the spectrum. If yours isn’t at the has-treatment end of the spectrum, maybe you will be lucky enough for yours to shift in that direction… but your methodology will have to go ahead without counting on it.

The official name for MS used to be female hysteria, a psych diagnosis. (About 80% of MS patients are female, a common pattern for autoimmune diseases. Study after study has shown that medical care tends to dismiss women’s health problems more than it dismisses men’s.) Evidence of damage to the myelin sheath on nerves in the central nervous system led to a name change and movement along the spectrum into the middle. Science investigated further and discovered the damage was being done by the immune system, so MS got classified as an autoimmune disease alongside SLE and RA. It remained in the middle because there still wasn’t a decent basket of treatments for it.

Then a patient with MS got cancer and chemotherapy for the cancer brought on remission from their MS. Knocking the immune system down a notch provided relief from an autoimmune disease!

That serendipitous discovery revolutionized medical care for a slew of autoimmune diseases, moving them to the end of the spectrum where they now reside. Treatment isn’t the same for all of them. For example, the first chemotherapies for SLE focused specifically on wiping out as many B cells as possible from the immune system so the body wouldn’t use defective ones as templates to make fresh ones. The body had to repopulate B cells from the original uncorrupted template. After several months, whatever faulty B cells escaped the chemo propagated enough copies to cause problems again. The patient got months of remission until that happened.

Other autoimmune diseases require targeting of other parts of the immune system. But the general principle works across a number of autoimmune DDs and moved them along the spectrum.

If Your DD Has Definite Treatments

If your DD is reasonably well understood and has a decent basket of treatments, your methodology for living with it is simpler than it would be elsewhere on the spectrum.

Like everyone else who has a DD, your condition will fluctuate. When it goes into exacerbation (a downturn), your doctor can adjust your treatment protocol. Sometimes the doctor’s adjustments will do the trick. Sometimes they won’t.

You have to pay attention to how you are faring and keep your doctor informed. Your experience as a patient is information the doctor needs in order to know whether to keep you on the current protocol or change it.

As long as your doctor is a good one who stays up to date and is focused on patient care, keeping up with research news about your DD is optional for you. The odds are very low for finding anything better than the treatments your doctor has available, so you can concentrate on your quality of life. You don’t need to chase treatment ideas. Of course, if you’re like me, you may keep tabs on research news anyway, but you can get by without doing so.

If Your DD Doesn’t Have Definite Treatments

If your DD doesn’t have tidy basket of treatments, you have a lot of work to do.

If your DD isn’t well understood yet, you have even more work to do.

This is because even your doctor can’t quite know what’s going on with your illness or what to do about it. You need help from your doctor, the doctor needs help from you and both of you need help from everyone around the world who is researching your DD. Nobody is going to solve the puzzle on their own.

This is where FM and ME/CFS patients have been for decades. This is where Long COVID patients have been ever since SARS-CoV-2 began sweeping the world.

In a sense, you have to become a scientist and a researcher specializing in your case of your DD.

Key Points to Remember

You’ll need to step through your methodology over and over. While you do so, there are several key points to keep in mind. In no particular order:

Use whatever can help make life easier for you. Your capacity is more limited than it used to be, so using assistive devices or strategies is fair game. Examples include but are not limited to:

• Easy-grip kitchen implements.

• Smartphone apps to keep you from missing appointments, forgetting important information, etc.

• Parking badge from the government that entitles you to use parking spaces reserved for people with disabilities.

• Walker or cane to avoid losing your balance.

• Wheelchair to avoid blowing your limited energy on just walking into a supermarket or waiting in line.

• Furniture at the right height to make it as easy as possible to stand up, or even an easy chair with an electric motor to help you stand up.

Having a DD does not exempt you from developing other health problems. (Remember the MS patient who got cancer?)

Getting other health trouble always feels like piling bad on top of bad, but there is a chance that unexpected good will come out of treatment for the new problem. (Remember the MS patient whose cancer chemotherapy brought on MS remission?)

Try not to automatically make assumptions about mental or emotional issues. Some DDs meddle with your brain and energy level in ways that disrupt the way your brain works. You experience that as trouble in your thinking, memory, coordination, autonomic functions… and your feelings, emotional volatility, even what you regard as your personality. If someone tries to convince you that everything wrong with you is psychological, the odds of them being right, although not zero, are quite low. You may find psychological therapy helpful for coping with what is happening to you, but it won’t be able to mend physiological damage.

Methodology

Even when your DD is at the end of the spectrum where there are definite treatments, your doctor’s methodology will be similar to what I’m about to describe. Your doctor has more knowledge and experience to apply, and they are so accustomed to it that it may seem automatic to them.

Follow or Join Some Groups and Info Sources

The internet and social media get criticized, rightly, for ways in which some people use them to cause harm, but for people with DDs they are lifesaving.

Be wary of popular press coverage about DDs. Journalists tend to write for mass market appeal. They tend to “get it wrong.” You’re better off looking at articles in scientific or medical journals if you can wrap your mind around them enough to get the gist of them.

If the studies are too hard to read (which they can be for all of us who aren’t experts in the field), online groups of people with a pertinent special interest in one or more DDs tend to have some members who read studies and translate the most important findings into understandable language in group discussions.

Being in online groups of patients and loved ones of patients is also great for finding out about coping strategies, learning who the best doctors are, and simply not feeling like you’re grappling with what you have entirely alone.

You need not limit yourself to groups interested in your DD. In Compuserve’s Chronic Illness Forum, we found that people with a wide range of DDs had a surprising amount of stuff in common. Coping strategies in particular crossed over from one DD to another readily. In the current pandemic, many Long COVID patients credit the ME/CFS patient community with being quickest to recognize what was happening to them and offer what support or suggestions they could.

Be aware that groups of patients are full of people who are unwell. That sounds obvious—it has implications. Spats and misunderstandings occur in any group of people. Among people who are sick, the fact that they already feel bad can magnify everything. We had ups and downs due to that in the Forum. You’ll have it in any patient groups you join. Ride it out if you can and leave if it reaches a point where it’s too much. Ultimately, you are all there to try to support each other as best you can, but you’re also all human and dealing with limits imposed by your health.

Make a List of Your Health Issues

You’re keeping notes about how you are doing. From those notes, you have a list of symptoms. They may be a mishmash of physical, mental and emotional. They are likely to shift over time: waxing, waning, disappearing and appearing.

Choose a Bite-Sized Target

Choose something that is especially impeding you. It need not be the worst issue. It is one that especially gets in your way or affects how you feel more than most of the others, and it seems like one where you might be able to come up with a way to make it better.

You aren’t trying to make the whole DD go away. You aren’t even aiming to completely get rid of the specific problem you choose to target. Your aim is some improvement, any improvement, in it. Setting a bite-sized goal gives you a better chance of achieving success.

Study Until Some Ideas Surface

Learn about that specific problem. What could cause it? What could it mean? (If you aren’t sure how to sift valid information from garbage, I wrote about that in Recognizing Rubbish.)

As you begin to understand it more, you may start to get ideas about what could diminish it.

Maybe you’ve realized this part of your DD might be something else, a separate illness happening at the same time. You and your doctor can check that out and if it’s correct, perhaps it can be treated. More often, your doctor has done what they can offer and you’re looking at other options such as over the counter medicines, supplements and alternative therapies such as acupuncture.

As you study and think, beware of “snake oil” and crackpots promoting dangerous falsehoods. Even people with medical degrees can fall under the spell of a wrong notion. Don’t believe anyone (including me) recommending therapies unless and until what they say checks out. I have seen people try crazy, hazardous alternative treatments that made no sense. It’s incredibly hard to resist the promise of a cure when you’re desperately sick, but for your own sake, you have to discard ideas that don’t hold up to your scrutiny.

When you have at least one idea for what you may be able to do about this target problem, you’re ready to experiment.

Run an Experiment on Yourself

Don’t try all your ideas at once. You’re becoming a scientist about your own health. Each idea you try is an experiment. Pick an idea and try it for a while.

Usually, it will be best to try only one thing at a time. If you try two different experiments at once, you cannot be sure which one is responsible for any changes you notice. Occasionally an idea will require trying two or three things together, but do this only when you must. An example is taking amino acids because you suspect your metabolism needs them to compensate for some type of damage. Taking a well balanced array of them is more likely to make a difference than taking just one and still being short of the rest of them.

Usually, you’ll need to try an idea for at least two weeks before deciding whether it is helping. However, some ideas will need a longer trial.

Note: If your experiment begins to make your health worse, don’t make yourself continue through the full course that you intended to try. Stop that experiment before it sets you back any further.

Was It The Experiment or Coincidence?

If you notice improvements, sometimes they will be due to the idea you are testing, and at other times they will be due to your body healing itself a little during the time when you happened to experiment. You may need to back off to find out whether the idea or natural healing caused an improvement.

Here is an example. I pinched a nerve by picking up something a bit heavy at a wrong angle. Not horribly enough to need a doctor, but enough to hurt. It takes weeks for nerve injury to start feeling better. I tried turmeric after reading a study about its unexpected reduction of the incidence of heart attacks and strokes. The study authors thought anti-inflammatory effects were the reason, so I thought I’d find out whether it could dampen the inflammation at that nerve.

After two months I felt a tiny bit better, but not much. I thought it must only be due to the passage of time, not turmeric, so I didn’t buy any more when I ran out. Three days after my last dose, the nerve got much more painful again. That’s when I realized the turmeric actually was helping. It was simply very slow and subtle. (In the end I found it took two months to make a difference I could notice and six months to reach full effect.)

Adjust Your Routine

Now that you know the outcome of your experiment:

• If the idea helped, add it to your routine.

• If the idea made your health worse or had an adverse impact that is too much to put up with for any good that it did, make a note of that and cross it off your list of possible treatments.

• If the idea had no effect, make a note of that and cross it off your list of possible treatments.

Rinse and Repeat

Go all the way back to where you made a list of your health issues. It’s important to revisit your list of symptoms and problems, because it may have changed. Some of it may have gotten better or developed new details or disappeared. Some new items may need to be added.

After you have updated your list, pick the next item you want to tackle and go through the steps again.

Staving Off Ambushes

Staving off ambushes can be folded into your main methodology, or might be something you do on a parallel track.

Many DDs involve an immune system that isn’t working the way it should. It may be impaired, as it tends to be in AIDS. It may be targeting incorrectly, attacking parts of you in addition to attacking invaders, as it does in MS, SLE, RA and other autoimmune diseases. It may flip-flop between the two extremes, as it can in some ME/CFS patients. It may be overwhelmed by the fight against a potent pathogen, as it often is in chronic Lyme or active tuberculosis.

From AIDS, we know that the worst effects of an illness can be from other pathogens taking advantage of doors HIV opens. Hardly anyone dies of their initial infection with HIV. It often seems like a bad episode with influenza. But HIV doesn’t go away. It lingers, chipping away at the immune system. As the immune system weakens, patients become more and more vulnerable to both new infections and flare-ups of old ones their bodies are no longer able to keep latent.

A pathogen you caught decades ago can jump up to ambush you.

You probably know someone who has gone through a bout with shingles, which can be severe and painful. When you catch chicken pox, the virus that causes it (herpex zoster) never leaves. When you “get well” from chicken pox, your body has successfully forced the virus to become dormant. It hibernates within you, waiting for an opportunity to wake up and wreak havoc again. If it sees your immune system weaken in certain ways, it reactivates. The result is a case of shingles.

If your DD could raise your risk of episodes like that, find out whether you could take vaccinations to prevent some of those potential reactivations. Your DD might damage your immune system in ways that make such vaccinations a bad idea—you might be at risk of having a wild overreaction, or your immune system might be unable to respond to the vaccine, or it might already be too busy to cope with a vaccine. But if you are able to take those vaccinations, they can shield you from some nasty possibilities.

To get such vaccinations, you’ll need to talk with your doctor. You’ll also need a round of tests to find out which latent viruses you carry so you’ll know what vaccinations to look for. (In the UK, the vaccinations you need may not be available through the NHS. In that case, you can only get them by paying at a private clinic. In Canada, if the health service doesn’t offer them, you have to go abroad and pay at a private clinic.)

There are vaccines to prevent shingles, the example I mentioned. Shingrix is the more recent of them, more effective and longer lasting than earlier vaccines. It’s a two-jab protocol. It isn’t cheap. It may knock you over for a few days. Avoiding shingles is worth all of that.

There aren’t such vaccines for many other viruses that are notorious for reactivating, but vaccines are being developed for some of them. A couple of times a year, search for medical news about new vaccines that have been approved in case one that you want has turned up.

Obviously, you don’t want to acquire any new infections that would add to the list of latent pathogens you carry. This may require you to change some personal habits.

For an example, here is some of what I do.

Nearly everyone carries Epstein-Barr virus and cytomegalovirus. I don’t. There is nothing in my medical chart or lab tests saying my risk with them is abnormal, but I’m aware that some people with my DD have trouble with them. There is no way to be sure of whether I would be unlucky with them, so I don’t want to acquire them. I don’t share a glass with anyone else, or take a taste of their meal after they’ve touched it, or have any salsa after someone else has double-dipped in it because those are ways the two viruses can spread. I also subscribe to Medic Alert. Both my bracelet and my records there emphasize that if I need a blood transfusion, it should be treated CMV-negative blood.

Medical personnel used to be trained to look for Medic Alert bracelets or necklaces. They are often trained not to look in wallets so as not to be accused of theft, so wallet cards aren’t helpful. Younger generations of medical professionals seem to be unaware of what Medic Alert is, so even that is no longer a reliable way to make sure emergency treatment won’t stumble directly into your allergies, adverse reactions to specific drugs, and so on… but you can try.

Note: Pathogens to watch out for in this regard include but are not limited to all the herpes viruses (simplex 1 & 2, varicella/zoster, Epstein-Barr, cytomegalovirus, HHV6, HHV7, HHV8) and tuberculosis.

You Are Now Your Favorite Researcher

As I said, you are now a scientist and researcher. Your subject is your own health. You are now your favorite investigator on that topic.

You will probably also refine what I have laid out here. Feel free to tailor it to suit you. I just want you not to have to figure it out from scratch.