No More Hope Left

Perhaps interesting that I should drag myself to this site tonight. I’m not a doctor, but I hope you may find may find one useful thing below useful for you today.

Are you from the UK? It seems as though what is called chronic fatigue syndrome (CFS) in the US is called ME in the UK. ME seems more fitting, as it sort of implies inflammation (due to infection) of in the brain.

In the US, the CFS diagnosis is often given to folks who have very high viral titers of EBV, CMV, a nd HHV6. Dr. Montoya at Stanford University medical is the only doctor I know of who has done research on this. I don’t have the name of his protocol, but you can do a few Internet searches to find out about that protocol. In involves ramping up on antiviral medications and taking them for a few months. He has been as successful as anyone I’ve heard of in resolving CFS alone (that is, CFS/ME without any other identified issues). You may also find taking non prescription antiviral strategies to be helpful (lysine, oregano?) with viral infections, but I’m way out on a limb with that, just want you to know there may be some non-prescription things that may be helpful.

I can relate to what you are saying on many levels. I didn’t even know this, until one day a doctor mentioned the term for one of the things you are describing. The difficulty standing thing is called orthostatic intolerance. Savvy doctors check this for weird conditions by taking your blood pressure while you are sitting, then they take it again a moment of two after you are standing (or propped up against the wall). Try it, and see if there is any difference. Often the resting standing is lower than the resting sitting.

While I had sensed a “disturbance in the force” the year before being initially diagnosed with CFS, it was the collapse of my stamina that had me seeking medical answers. During this time, I learned my cortisol output was nearly flat. It is supposed to be highest in the morning and trail off by the end of the day. Here in the US, the idea of adrenal crisis, adrenal fatigue, or adrenal exhaustion are regarded as poppycock by mainstream practitioners because they only regard very high or very low cortisol to be a problem. Other practitioners think otherwise and may want to help you balance your hormones so you can feel better until the underlying issues are dealt with. Sometimes a little compounded cortisol helps a lot, but I’ve heard too much for too long sort of lets your adrenal glands go on vacation.

Here’s the rub. For people who have Lyme disease (or other tick borne illness), it is not uncommon to get the CFS diagnosis on the way because high viral titers can be measured pretty easily in blood tests, but your body may have already fought these viruses off, the resurgence of high titers may mean your body is losing it’s hold on thing it has already fought off.

Getting a positive diagnosis for Lyme disease is problematic for a couple of reasons. For one, the sucker works on compromising your immune system, which may make it difficult for your body to produce the antibodies they are trying to measure. Another reason is that the tests themselves have more false negatives than false positives. While a persistent patient may get tested on a couple of different tests, unless they are properly interpreted by a knowledgeable (LLMD) physician, you are not likely to get diagnosed. In the US, part of this is complicated by two problems: many doctors only think Lyme disease is endemic to certain areas, and the CDC took a couple of “bands” (western blot tests?) off the table because of potential vaccines which never were safe enough for use. This has resulted in statistical under-reporting of the disease by the Center of Disease (information) Control. But what I have been casually calling Lyme is a spirochete bacteria called Borrelia. So they may call it neuro borrelia in your part of the world. There are a lot of different subspecies. Left untreated, it has a strong association with Alzheimer’s disease, Parkinson’s disease, multiple sclerosis, and Lou Gehrig’s disease, but there are many years (decades?) between a tick bite and something like that developing. There is a good documentary about Lyme called Under Our Skin. You can stream it through Netflix.

I found out about having Lyme backwards. I had learned my genetic HLA type (15-6-51) cannot process and eliminate the toxins produced by the Lyme disease bacteria (or by mold). So, aggressively treating the lyme bacteria can make me sicker, but I sort of have a “perfect storm” of genetic issues which make treatment complicated. It was learning about my HLA type which caused me to get tested for Lyme. But some people with a similar type can feel sick based on the inflammation from mold alone.

Lyme typically resolves easily with antibiotics when caught early (which it may not be). Even so, some people recover pretty well on a longer antibiotic stint, but people who have the Lyme bacteria also typically have a co-infection, and if those tick borne co-infections are not treated, they may still feel sick after the lyme has been treated. So, don’t freak out if you should find out you have it.

Sometimes having a trooper of a body (that has been fighting things for a while) can cause what looks like a “primary” immune deficiency (immunoglobulinemia?) even though it may just be the result of being in the battle.

So, those are some of my features. Hopefully you don’t have all those complexities, but I hope you can find another piece to your health puzzle.

I know it is difficult having something that it is hard to identify, or something for which they don’t have a nice packaged cure on aisle three of your local store, but that doesn’t mean you don’t have a physical issue. And yes, it is hard to think clearly or positively when our bodies are alerting us there is something wrong. I know it is hard when people don’t understand. After a brief support stint, it’s easy for people to detach because everyone seems so busy and rushed trying to make things work in their own world, that they’d rather pigeon-hole you than endure the idea of a young person like yourself struggling with a physical condition. Every relationship is different, but don’t personalize their ignorance. Who knows what there thing is. Doctors are people too, and some of them will blame the patient rather than admit they can’t find and resolve the issue.

I know this may sound pathetic, but being able to share these thoughts with you has given me a tiny sense of value today, so I thank you.

Blessings. You’re not alone.

I don’t know why, but prednisone can be brutal. Maybe it is because we don’t have nano technology to help deliver the right amount you can tolerate.

In terms of diet, gluten intolerance has been linked to cause depression, so if you can get off it a month, you may find you have a better mental desktop.

If you are in Europe or some place where it isn’t forbidden, i have found Asyra to be much more reliable at identifying pathogens and sensitivities. In fact, it has been through Asyra that i have pursued blood tests with conventional doctors, asking them to test for things in the Asyra results. It can be used for diagnosis here in the US (although many practitioners regard it as nonsense), it cannot be used for treatment (which is recommended homeopathics). I have found it to be 100% accurate, and it prioritizes what is straining your body most.