What is there to try next?

[Hip]

There are many things missing from this list which is a random smattering of different treatments which will only work if you have a problem that they will help.

The above list is not random, but comprises evidence-based treatments used by ME/CFS doctors, or treatments for which there are anecdotal accounts on ME/CFS forums that the treatment can be effective.

If treatment is used by an ME/CFS specialist, or have been shown possibly beneficial in studies, as many of those treatments in the above list are, then that's at least some indication that they may work.

 

[nryanh94]

Expecting one intervention to help one at a time isnt too useful as there is a cascade of other things that happens in this illness. Working this as a systems biology problem is more helpful. For instance, EBV can deplete nutrients like zinc and vitamin C, deplete collagen and increase symptoms from the nerves between discs in the spine, stress the adrenals and thyroid causing adrenal insufficiency and low T3 syndrome, fragment mitochondria, cause oxidative and nitrosative stress, put a load on the immune system causing other viruses to reactivate and weakened immune function, and trigger all kinds of autoimmunity, none of which are fixed by the list of drugs you tried.

In addition to your ME/CFS specialist, you might try working with a functional medicine doctor who might help you with some of these issues.

And, my ME/CFS specialist had me on Valcyte for 20 months, not 3.
There are many things missing from this list which is a random smattering of different treatments which will only work if you have a problem that they will help. Properly testing to figure out what problems you have and applying treatments appropriately is far more successful.

For example, B12 does not work by itself, it works in concert with other B vitamins and mineral cofactors.

Candida and oxalates are gut problems that are not on this list and treating them can make a big difference.

Treating ammonia can help with brain fog.

Glutathione and branched chain amino acids can help with PEM.

Martin Pall's peroxynitrite reducing protocol and Thomas Seyfried's mito correction protocol can be helpful.

IVIG has supported my immune system to be able to help fight viruses and bacteria. It has done nothing for my pain because I don't have pain.

Rituximab, when appropriately prescribed has helped some of us, as has plasmapharesis - both are for autoimmunity.

And so on.

The test results you showed were just antibodies. Once you've had these illnesses, your antibody titers will probably be high and chasing them while on medications is not terribly productive. Why is your doctor not testing quantitative PCR for these infections?

I’ve been in the process of trying to find a physician, pretty difficult task. As for the antibody tests, I believe VCA And EA were the tests that Montoya used rather than PCR (he and Lerner both found PCR to be negative in most cases). Based off Montoya’s standards I have a reactivation.

FWIW, I’ve seen 3 separate physicians (2 ME specialists and 1 functional medicine) and all 3 did the same tests and drew the conclusion that EBV was reactivated.

 

[dannybex]

I don't recall every having anything like IBS.

One can have serious gut issues like SIBO however, without any symptoms.

 

[Wishful]

One can have serious gut issues like SIBO however, without any symptoms.

If it doesn't cause any symptoms, how can it be considered 'serious'?

 

[dannybex]

If it doesn't cause any symptoms, how can it be considered 'serious'?

You're not supposed to have bacteria in your small intestine. If you do, it can 'eat' your food before you get a chance at it, and produce toxins (which can interfere w/the krebs cycle, etc.), and deplete essential minerals, vitamins in the process.

From Mayo's (conservative) website:

Small intestinal bacterial overgrowth (SIBO) can cause escalating problems, including:

• Poor absorption of fats, carbohydrates and proteins. Bile salts, which are normally needed to digest fats, are broken down by the excess bacteria in your small intestine, resulting in incomplete digestion of fats and diarrhea. Bacterial products may also harm the mucous lining (mucosa) of the small intestine, resulting in decreased absorption of carbohydrates and proteins.
  
  Bacteria can compete for available food. And compounds produced through the bacterial break-down of stagnant food can also trigger diarrhea. Together, these effects of bacterial overgrowth result in diarrhea, malnutrition and weight loss.
  
  
• Vitamin deficiency. As a result of incomplete absorption of fats, your body can't fully absorb the fat-soluble vitamins A, D, E and K. Bacteria in the small intestine synthesize as well as use vitamin B-12, which is essential for the normal functioning of your nervous system and the production of blood cells and DNA.
  
  The overgrowth of bacteria can result in B-12 deficiency that can lead to weakness, fatigue, tingling, and numbness in your hands and feet and, in advanced cases, to mental confusion. Damage to your central nervous system resulting from B-12 deficiency may be irreversible.
  
  
• Weakened bones (osteoporosis). Over time, damage to your intestine from abnormal bacterial growth causes poor calcium absorption, and eventually may lead to bone diseases, such as osteoporosis.
• Kidney stones. Poor calcium absorption may also eventually result in kidney stones.

 

[Wishful]

Small intestinal bacterial overgrowth (SIBO) can cause escalating problems, including:

Those sound like noticeable symptoms to me. Secondary yes, but still symptoms of SIBO.

 

[dannybex]

Those sound like noticeable symptoms to me. Secondary yes, but still symptoms of SIBO.

Well we'll have to agree to disagree. IBS has very noticeable symptoms. Not being able to digest something can be due to a variety of other causes, and usually isn't noticed for months or even years.

 

[Aidan Walsh]

1.48 mg/dl 1.35 is normal. Dr wanted me off once it hit that

Was this the creatine kinase levels or the creatinine test? My CK result was 69 Normal, ranges were (40-320) used there at a London, UK Lab... My Creatinine test always comes back low range a few points below. Do you possibly have porphyria? There are 7 types

 

[Aidan Walsh]

really. I had porphyria tested and had elevations in blood stool samples. Drs had no clue what it meant or what to do for it. I wonder if this is a common finding in people with cfs who actually test for it.

Did the Doctor suggest the type you had? If you had elevated stool this points to 2 types of Porphrynes one is the Variegate & the other is the Coproporphyria I think these 2 are the skin types, the stool only picks up these 2 types.

I think they also come up in blood & urine levels, but the only 2 in the stool so likely you have one of 2 above. Do you have skin, light, Sun issues?

There are some treatments & genetic tests, also someone mentioned a 24 hr urine collection as well...All forms are Genetic defects passed on at Birth from one or both parents, also Chromosome 12 defect in hypermobility is the same defect in Porphyria Chromosome 12 so Yes there must be a connection in place...

 

[Aidan Walsh]

Do you know why? Perhaps I should repeat it! But I don't have any of these symptoms except high heart rate at rest.

Tachycardia is a symptom of Porphyria & if one has Syncope POTS the Tachy comes up then the bp drops...

You mentioned the stool test I think as Negative this test covers 2 types of porphyria Variegate & Coproporphyria, the urine test & blood test & genetic tests pick up all 7 traits. You can do the stool sample

again but your Doctors need to do urine, blood as well...The stool test picks up some Light, Sun, skin issues so do some other tests.

I think the 3 types of Neurological kinds are 1. Variegate 2. Coproporphyria & 3. (AIP) the most common one Acute Intermittent Porphyria.

The girl on urine test she had a form of skin Variegate positive she had skin issues & also with hair growth like facial spots of hair or on the body. I would not do the stool test again, mine was Negative, it is also good to do

the tests if in Acute attack phases or really sick, one Woman said her AIP comes up always as 10x fold or 100x fold elevated. There are Private Labs in Europe but likely have to go there to do urine stool blood samples, maybe you can get away from stool if Negative or run it again...

What happened with the Ambassador link you had, you took it down?

 

[Aidan Walsh]

Meant to correct this, there are 4 types of Acute Neuro Hepatic Porphyrias AIP, VP, HCP & HCP. The photosensitivity issues are VP & HCP types

 

[Redtruck99]

2018 Therapies based on targeting Epstein-Barr virus lytic replication for EBV-associated malignancies
https://onlinelibrary.wiley.com/doi/pdf/10.1111/cas.13634

 

[Redtruck99]

More botanicals for EBV

2019 Novel Therapeutics for Epstein–Barr Virus
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6429425/
Section 7. Medicinal Plants

 

[lenora]

Thanks @Redtruck99......lots of information to take in and it's tough reading.

There have been so many new medications to help our cause (one hopes!) that have been developed over say, the last 10-15 years. One forgets how little we had to begin with in the l980's (forget exact year, sorry).

The antivirals have certainly helped many people and ongoing improvements and additions have been made over the years.

I think my condition was a head-on collision of many different events that occurred at the same time....perhaps it is for most of us. Thanks for your efforts, and I do hope you're at least OK. Yours, Lenora