Thanks for the welcome I'm in BC, 11 yrs now, however I'm an american. I married a canadian who also has CFS, FM and MCS (as do I) and here I am!
I also have a 36 yr old son who got CFS/FM when he was 16. Anyway we make a pretty fine pair here LOL. Shall we say life can get real interesting with two PWC's in the same household?
I have never seen a Dr here for CFS, just for other things. For one thing no dr is taking new patients, and for another I have yet to hear of one local dr who even recognizes CFS (and no way MCS). Dh (dear husband for those who don't know the shorthand) was dx'd with CFS in '89. However after that dr died the next Dr told him there was no such thing. He did get a dx of FM but --- I have met one other person with CFS but she got dx'd by Courthers <sp?> when she lived in Van. Her local dr basically just followed what he said to do back when she first started going to this local one. He pretty much just addresses her FM.
I've been ill almost 30 yrs now. My first Dr, who dx'd me with pesticide poisoning, was sharp, and into suppliments, health foods etc. I was fortunate enough to read about someone who'd had aluminum poisoning in the newspaper and met her. From her I learned about detoxing and herbs. My earliest symptoms were MCS...however the CFS most likely started then too, or shortly after. Neither of these really had a name at that time. MCS was called EI and when I first got dx'd with CFS, some 9 yrs later, they called it CEBV.
So from earliest days I did juice fasts, detox, suppliments, herbs and homeopathics, went to a chiropractor and later myopractor (who was a great help and knowledgable about homeopathics etc.) The Dr who did dx me with CEBV at least had read about both MCS and CFS and never doubted. However he also couldn't help me. No allopathy ever helped. I do believe that doing those things early on might well have helped. Moving out of the city helped most ---but here I am back in a city again... and can't afford alternative treatments.
My husband Alan has FM and 20 years ago our doctor told HIM he didn't believe in it.
That has always infuriated me. What does it even MEAN? Doesn't believe in it? Here it is, Doc. Right in front of you. Look at it.
My condition gets basically ignored outside of my family and naturopath. But Al has had some people treat him with outright suspicion, that he is just lazy and trying to get away with something. Like what? Not sure what they think the pay off is.
So from earliest days I did juice fasts, detox, suppliments, herbs and homeopathics, went to a chiropractor and later myopractor (who was a great help and knowledgable about homeopathics etc.) ... No allopathy ever helped ... and can't afford alternative treatments.
I am more and more convinced all the time that alternative treatments are the best way to go, at least they have been working for me.
It's a crying shame that most of them are out of so many people's reach. I know if I could afford to do all the things I know will help me (not wonder if they might help but know they will because they have in the past) it would shorten my recovery time. And there are so many people still desperately sick that would have a better life. I really believe that.
For those who don't know -I put a page on my website a year and a half ago explaining the desperate situation he was in and asking for financial assistance to keep him afloat. His father put together a website asking for the same. I have no idea how much money was raised but I'll take a guess - next to nothing.
This is not a wealthy community. I don't giving money is our strong suit (even tho the CAA did reach its Research Initiative target.). If I'm good at raising money for non-profit organizations nobody has told me about it- I'm certainly trying to do that.
If I was better at raising money I'd do it for myself. The website produces about $100 a month in income from ads and donations. I also make $100 a month working for Health Central - that's all the money I bring every month.
While there certainly are some wealthy people in the community so far as I can tell the organizations and groups in it are small and they are all strapped for cash. The CAA just has a few thousand members. This is all shoestring type stuff.
I hope his appeal for money as he was falling apart and his father was forced to support him on his meager salary did bring in some real money - but honestly I doubt that it did.
Since my gradual onset beginning in 1985, every treatment involving immunoglobin, drugs, etc. has backfired and left me worse, until I managed to recover slowly but never completely. The most recent, this past winter was six IVs (of what was supposed to be a series of 12) of Vistide, a powerful anti-viral. I quit early and it took me three days to manage a six-hour drive home.
I was in bed about 95% of the next three months and, now, almost seven months after the treatment, I'm operating at about 50 to 60 % (depending on the day) of where I was before the treatment. The debilitation has been mental as well as physical. I take only liquid aminos, which help with energy, and Klonopin/Flexeril to sleep. (Wish I had all the money I've tried on other stuff!)
This story has fascinated me. My son has been almost totally disabled for twenty years. The first physician he saw who didn't dismiss him as having "mental problems" was a Dr. Karl Markwood in Sacramento CA. Dr. Markwood was treating allergies and ME/CFS problems with an unorthodox approach including his own formula of sublingual aminos which really helped. The AMA drummed him out of the profession! I often wonder what he might have accomplished had he been allowed to continue.
That is a terrible experience you've been going through. And watching this happen to your son is wrenching, I know.
You mention the aminos helping. My personal view anymore is that if we can slowly detox the body, and rebuild the immune system through natural means, and taking care of the huge deficiencies we have, removing what bad for us and putting in what is good, we can have a shot at health again.
Each of us going to have a different set of toxins and deficiencies, but the principle remains the same. That is what is working for me at any rate.
I read one doctor who said though his roots were in conventional medicine over 20 yrs, he'd learned that any chronic patient of any disease, he would automatically put them on B12, B6 and folic acid because he knew without checking further that they were going to be deficient of these. This wasn't all he would do but he automatically started there.
Conventional medicine is good for alot of things, esp. emergencies and where quick interventions are needed. But it is crap at chronic conditions. That is where alternative treatments can shine. Because they build up the long-term deficiencies and reduce the huge buildup of toxins.
I read the article and identified with way too much, especially being put in a psych ward because I couldn't sleep because of the intense body pain... Fortunately that was 15 years ago, and I can laugh about it now.
It is sad that Doctors are so stuck in their own thinking and their pet insurance diagnosis they can't think outside of the box and actually see what is right in front of them.
and those things would be ME/CFS/FMS, adrenal fatigue, viral infections, mycoplasma, etc.
I became ill in 1990 and it has been a rocky road. Sometimes I improve, and sometimes I go downhill.
Presently I am doing better than at any time in the last 19 years.
However, detoxification needs to go slowly. You can't say, I am going to get all of these poisons out of me right now, so I can be better. During the process of detoxification, as toxins are pulled out the system and released, they travel through your blood stream, which goes through your brain, etc. Detoxification can be exhausting. You may complete a process such as taking out all heavy metals in 6 months, but you will still be weak from the process 6 months later.
Supplementation, amino acids, proteins, probiotics etc are extremely important to keep up with as you go through a detox.
I detoxified from heavy levels of mercury, arsenic, nickel, cadmium and lead. It took a year, and I experienced the worst fatigue of my life that year.
This year, I'm starting to dance again...
I'm always amazed how the medical community craves concrete documentation in order for them to validate the efficacy of treatments.(this process is called case reviewing)
BUT, when a doctor who practices alternative medicine, such as my doc, offers 100's of successful cases for review, the mainstream medical community isn't interested?
The above is a big dilemma we face in the future, if we want to expand the scope of proven effective treatments.
MY HEALTH-- As I replied earlier in this post, I do have some lingering cognitive difficulties. From my low point in December, where I was at 1/10th of a percent functional. I'm now 90% physically and up to roughly 85% neurologically. I have a little more nerve damage than originally thought and nerves take a long time to heal. Specifically my cranial nerves and areas of my ganglia dorsal(brain stem).
Remember my starting point in rehabilitation started with leaning up for 30 seconds to retraining my brain to do everything properly again. Read, write, word recall, focus and completing a thought process. Literally SWEATING, while forcing my brain to take in a few words out of a book.
MY TREATMENT-- O.K.... I'm assuming everyone had a chance to read the informational link I provided in my reply "Warm Greetings" yesterday. If so good for you, if not, I'm gonna post it below. It's a fairly long read, but it will give you a very good understanding of neural therapy.
I was treated with Neural Therapy in combination with acupuncture, laser light therapy, and nutritional replacement.
Before I go one step further, THE SUCCESSFUL OUTCOME OF THESE TREATMENTS, VARIES GREATLY. IN MOST CASES, A DIRECT RESULT OF THE PRACTITIONERS SKILL LEVEL.
When the correct formulas are used by a skilled practitioner, results are astounding, which I see every week. However when the wrong agents are used, especially by a practitioner who does not know how to apply, the results can leave you sick and broke... like I've found out in the past. This goes for anything...from Vitamin IV's to Acupuncture and so on.
Even though I used the other treatments mentioned above, they were only complimentary treatments to neural therapy. However they were all important for bringing my body back to health as quickly and safely as possible.
CONCEPT OF NEURAL THERAPY-- It seems Neural Therapy is based on the principle of.... the need to have proper homeostasis throughout the body. This seems to be the key in overcoming chronic illness and many pain conditions. Our immune system, which is made of cells, proteins and tissues forms a strong electrochemical bond throughout our body.(Not quite as electric as the toaster, but enough). In chronic illness of all sorts, we develop disturbances in the immune system or the electrochemical function of it. Neural Therapy, if done properly, corrects these disturbances or blocks. In turn, restoring our nervous system and immune system to a state of equilibrium. Neural Therapy is applied by injection, into meridian or trigger points throughout the body. In common practice, anesthetics are used as the injection agent.
O.K. listen closely. My doc had been using traditional neural therapy for years, as described above. He was having fairly good results. Fairly good, being 20% or 2/10 success ratio with several neuro-immune diseases, including ME/CFS. Of course success can be interpreted differently. SO lets just classify success as mostly recovered or complete resolution of symptoms.
At the same time, SEPARATELY doc was using homeopathic's and seeing a fairly good success rate in combating virus', bacteria, fungus, toxins and so on, with a higher success rate than Neural Therapy, but used for more general issues such as the ones I just mentioned.
DOCS UNIQUE TWIST ON NEURAL THERAPY-- Good guess, yes, he decided to combine the two. He replaced the standard anesthetics with homeopathic's. Some doctors do use other agents such as bee venom but very few in the world use homeopathic's now. These homeopathic's are hand-picked and matched to each patients needs. They are very specific formulas.
BENEFITS-- By combining the two, the homeopathics are effective on a CELLULAR LEVEL, because they are now being INJECTED into very specific points. Rather than simply being used orally or trans dermal. The effects from the treatment now last up to 10x longer as well.
In ME/CFS, docs focus is on the spinal cord and areas of the brain stem. As he feels these are major areas of infection and subsequent damage. (Such as my case).
Neural Therapy also induces detox. Deep detox, again on a cellular level, even detoxing the bones.
However there are two main obstacles those with ME/CFS face in recovering.
1) Ion Channel dysfunction-- This makes it nearly impossible for anyone with severe ME/CFS to detox.
In order for proper detox, chemicals need to transfer from cell to cell, On there way from tissues to the intestines and excreted.
With our Ion channel dysfunction, minerals are unable to permeate the cells properly. Cells need minerals and amino acids for detoxifcation. However the toxins can be forced up off the cells if enough effort is made..i.e. Glutathione I.V's or most mineral I'vs.
PROBLEM--Once these toxins are forced off the cells with these treatments, especially the neurons they still can't be fully filtered through the system... because of the ion channel dysfunction. That is a prime reason why I got hurt and many others in thier detoxification efforts. Most doctors assume if they are putting something naturally good in us, there should be no problems, thats incorrect. On the other end, most ME/CFS patients feel as though it's impossible for them to detox or use antibiotics/antivirals without negative reaction. I'm talking about much worse reaction than a herx that most experience in detox.
By correcting the imbalances in our electrochemical field, neural therapy restores the integrity of the cells. Allowing them to strengthen and once again function normally.
2) LEAKY GUT--This is a HUGE problem for nearly every ME/CFS patient whether they realize it or not. Now even if the Ion channel issue was corrected, the gut needs to heal or the toxins just recirculate throughout our bodies once the toxins make it too the intestines. Most ME/CFS patients cannot tolerate supplements designed to help the gut.
ACUPUNCTURE-- This is where acupuncture comes into play. Yes, it does work, there is a reason it's been around thousands of years. However, as mentioned earlier, success depends on the practitioners skill level. Not only does acupuncture strengthen the gut but it offers tremendous benefits for the liver, Kidneys, spleen and the rest of the body. Helping us accomplish our goal of returning the body back to proper homeostasis.
I tried not to be too technical so this was easier to understand. As it is a very complicated process.
I will discuss this treatment in more detail as questions are asked. In the meantime, I'm gonna make one more reply to this post within two days before I answer any questions.
Next, I'm gonna talk a little about my doctors perception of the disease and the future course of these treatments and others on the horizon. As I discuss more, the benefits of neural therapy applied this way will become more evident.
(Mike has opened up alot of new ground and we're going to continue the discussion on a new thread. You can find it at the following thread in this Forum: 'Listen To ME: Mike Dessin on the Doctor's Treatment that Benefited Him So Greatly See you there!