Gina Scott writes: How my health improved is a very long story over 13 years involving an expert physician and a lot of different treatments that addressed the multi-system breakdown that is typical of CFS.
CFS recovery periods (if a patient recovers at all) are typically painfully slow. It takes time to address all the different system breakdowns and figure out what to tackle first.
I’ve always said that it takes time, money and discipline to get better from a severe case of one of these immune deficiency conditions.
Time…because it can take months or years to see as little as 10% improvement in your health. Since there is no one proven treatment for CFS, you must experiment with different modalities to see what works for you. CFS patients’ bodies are also extremely sensitive to medications and treatments (and really, just about anything) so you usually have to gradually introduce any new form of treatment.
Money…because often times, treatment are not covered by insurance as they come in the form of supplements, IVs, acupuncture and other forms of medicine considered natural or alternative that is more gentle with the body and rebuilds core elements that are depleted. Pharmaceuticals and surgeries do not do this…although some pharmaceuticals are still helpful, there is no magic pill. Often times, doctors who specialize in CFS also do not accept insurance because their modalities are outside the scope of western medicine. Experts in the field typically also come at a steep price…just as you would expect to pay for the expert advice of anyone for any field.
Discipline…because getting well from CFS is like a job. I have equated it to training like an athlete. The diets. The routines. The endless tracking what works and what doesn’t. It’s incessant. It is not for the faint of heart. And the condition will force patience on you unlike almost anything else.
Many sufferers with severe cases of CFS do not function at the level I do. While I’ve never returned to where I was before getting sick, I can be very active. ALL BECAUSE I’VE HAD ADEQUATE, AND SOMETIMES COSTLY, TREATMENT. It is not uncommon for those with severe cases of CFS to never return to work, or any really normal sense of living.
Fortunately for me, that hasn’t been the case…and I have paid dearly for it, literally and figuratively. I must continue to receive treatments or, for now, I will slide back into poor health.
For most patienst, CFS is not so much cured as it is managed.
This is how I improved…
Addressing severe adrenal gland deficiencies and gut issues
Early on, my expert CFS doctor knew I had adrenal gland deficiency issues. This is common with CFS. He also suspected an imbalance of good vs. bad bacteria in my gut due to all of the nausea I was having. We set off immediately addressing these issues, and still do today.
My health slowly improved with an emphasis on adrenal and gut issues. But not enough.
Helping detoxification
Over time, I cleared another major hurdle with SAMe, which helps the body detoxify…another issue common to CFS patients.
Killing opportunistic bacteria
Then, addressing opportunistic infections in my gut and blood (AIDS patients are also known to get these) with balanced, lower-dose and longer regimes of antibiotics helped greatly. Also key was using a special DNA test from Metametrix and a cutting edge blood test from Fry Laboratories to specifically identify these bugs.
Blood thinners and other medications
Also key in my recovery was the use of low-dose Cortisol, Florinef and sublingual Heparin. Some CFS sufferers are found to have blood that is too thick (hypercoagulation), the use of Heparin under the tongue aids this. It helped me a lot.
In addition, I find I respond very well to homeopathy. Each CFS patient must experiment and find what works best for him or her. Another reason why this illness is so draining in every conceivable way.
Adrenal PC Shots
Finally, the Adrenal PC shots I use that are made in Germany have been life-changing.
I have used many, many treatments and supplements over the years. Aside from other healthy habits like eating well, doing yoga and taking long walks, these are the highlights of what has made the most significant differences.
My Current Regime
Because CFS typically involves a multi-system breakdown, many CFS patients need to support several systems of the body simultaneously in order to feel better.
My current regime may seem like overkill, but not unusual from most CFS patients who are actively treating their conditions. And also notice, multiple systems are supported by only a few things each, aside from the adrenal glands, which are commonly a major source of dysfunction in a CFS patient. So, while it seems like a lot, each system is supported by only one or two things.
While this multi-system support is critical for many, this doesn’t mean that a patient has to be on all of these treatments forever. In fact, with a reduction of stress created by the illness and resulting financial strains itself, it is possible to greatly reduce the number of necessary supplements. In other words, this condition doesn’t have to haunt you in a severe way for life.
What you see below is not arrived at automatically and has been finely-tuned and altered over the entire 13 years of my illness. Nothing below (with the exception of DHEA, Transfer Factor and three of the General Support supplements) was on my original treatment plan 13 years ago.
But, for now the medical regime that makes me functional (developed by Dr. Guyer, with my input where relevant) includes the following:
Adrenal Support: (many CFS patients have poor functioning adrenal glands)
Hydrocortisone (Prescription: $14/mth)
Florinef (Prescription: $35/mth) *
Isocort (Supplement: $29/mth)
SubAdrene (Supplement: $30/mth)
MaxAdrene (Supplement: $9/mth)
Tyrosine (Supplement: $13/mth)
Ginseng (Supplement: $18/mth) *
Taurine (Supplement: $15/mth)
Adrenal PC shots from Germany plus /B12/ACE ($100/shot x 6 per mth) *
Blood thinners: (many CFS patients’ blood is often too thick, causing hypercoagulation and harboring of bacteria)
NattoK (Supplement: $82/mth)
Heparin-used sublingually (Prescription: $25/mth) *
Detoxification: (many CFS patients have trouble eliminating toxins throughout the body like normal people)
SAMe (Supplement: $45/mth) *
Phosphatidylserine (Supplement: $20/mth)
Tri-Salts (Supplement: $18/mth)
Thyroid: (many CFS patients have some form of hypothyroidism, albeit subclinical)
1/4 gr Thyroid (Compound Prescription: $9/mth)
T3 (Compound Prescription: $13/mth)
T4 (Compound Prescription: $13/mth)
Hormones: (all of which leads to an imbalance in hormones)
Progesterone Cream (Compound Prescription: $12/mth)
Testosterone Cream (Compound Prescription: $4/mth)
DHEA (Supplement: $4/mth)
Electrolyte Balance: (poor functioning adrenals affect the balance of electrolytes in your body)
KMG (Magnesium/Potassium) (Supplement: $28/mth)
Sleep: (many CFS patients struggle with getting to sleep, and staying asleep, also a function of the adrenals)
GABA (Supplement: $14/mth)
Tryptophan (Supplement: $5/mth)
Digestion: (like sleep, many CFS patients deal with digestion issues…some people will go so far as to say that health begins in the gut)
Probiotic (Supplement: $24/mth)
Immune System Support: (at its core, CFS is known to be a dysfunction of the immune system)
Transfer Factor (Supplement: $23/mth)
Anti-viral: (a poor functioning immune system leads to viruses the body doesn’t kill on its own)
LDN (Compound Prescription: $10/mth)
General Support:
Vitamin C (Supplement: $19/mth)
Multi vitamin (Supplement: $10/mth)
Magnesium (Supplement: $5/mth)
B6 (Supplement: $4/mth)
EPA (Supplement: $9/mth)
* Indicates a treatment that made a significant and noticeable improvement in symptoms
