Could this REALLY be happening?
The unpredictability in ME/CFS can cut both ways, as Christine learns when she finds something that works …
One of the hallmarks of ME/CFS I have discovered over the last 20+ years living with this illness, as well as the year I have finally been under treatment by an expert is its sometimes amazing unpredictability. After time, it seems almost impossible to be disappointed when a new symptom appears, an old symptom exacerbates, a continued treatment begins to fail, or a new treatment makes me worse, because predictions cease and expectations are low. So, when an unexpected positive outcome happens, unexpected delight takes me by cautious surprise, i.e., “Could this REALLY be happening?!”
When I saw Dr. Chia for the first time in November, 2012, I went with guarded expectations…telling myself that even if he couldn’t help me, I would be thrilled to have a doctor who “gets it”! My 14 months of treatment with him continues to encourage me with unexpected outcomes.
When I was headed to my November appointment last Fall, it was with a discouraged heart because not only had the Inosine failed, but the Vicodin I have been taking for several years that usually at the least takes the edge off my pain, was no longer being effective. I approached the appointment therefore, armed with the question, “Do you see any hope for improvement at this point?”
As the appointment unfolded, I found that I didn’t need to ask that question.
Inosine and Cymbalta
The first thing we addressed was the Inosine he had prescribed at my last appointment in August. I gave him a synopsis of my journey with the Inosine, having adjusted it up and down per his instructions, but then stopping it after two months due to experiencing intense pain and finding no relief by decreasing it from 2 to 1 per day. I had also adjusted my Equilibrant dosage from 4 to 3 per day. I was relieved to hear him say I did the right thing getting off of it.
Inosine causes more pain – for now; but keep reading.
Because of increased pain and little to no help from the Vicodin, I asked him if I should go back to other medications that helped, for a time, in the past. He didn’t recommend that I go off the Vicodin. He suggested I discuss this with my primary when I see him. As I thought about it, the medications I had taken in the past, i.e. Cymbalta and Lyrica (not taken congruently), were replaced by Nortriptylene a few years ago. I take it along with the Vicodin since they are different types of medications.
My primary had delayed making a change from Nortriptylene to Cymbalta or Lyrica (for my neuropathic pain) at my last appointment with him until I obtained medical insurance again. I have also recently learned there is now a generic version of Cymbalta. I’ll be talking about this with my primary soon.
My blood tests for Dr. Chia showed that my inflammation level had stabilized: my C-Reactive level barely out-of-range and my Rheumatoid Factor, though still high at 36, had been gradually getting lower than my initial blood tests. These were the only blood tests he ordered for the visit.
Epivir
He instructed me to begin Epivir, the first antiviral that he gave to his son when he became ill. When I asked still “gun shy” from the Inosine about the side effects, he said that it has the least side-effects of any antivirals, and that only about 5% of his patients experience nausea, headaches, and dizziness. He explained that the purpose of taking the Epivir is to try to terminate the viral chain.
Epivir is an antiretroviral and anti-hepatitis drug
He said that he uses Epivir only in conjunction with an immune booster and that it would be a 1 to 2 month treatment. I was to take 1 Epivir per day. If I did better, I was to increase it to 2 per day. After two weeks on Epivir, I was to increase my Equilibrant dose from 3 to 4. He also told me to have blood work done after about a month.
I delayed beginning the Epivir due to finishing a round of amoxicillin for a throat and ear infection, then being slammed with intense pain and fatigue. I was then headed into Thanksgiving Day week, and expecting to be possibly slammed by the Epivir, despite the statistics of Dr. C’s patients.
I remembered my friend, who is also a patient of Dr. Chia’s, had talked about Epivir on his blog, so I re-read his post about it. I discovered that when he began it, he landed in the ER…on New Year’s Eve, no less! So, I delayed beginning it until after Thanksgiving. I also found myself needing prayer from friends for courage to begin what I believed would be a very rough go. Fortunately, I was able to enjoy Thanksgiving Day with my family!
When I got the prescription for Epivir filled, I filled it for only 15 pills, not being sure how I would respond, as well as to help cash flow since the cost, without insurance, was $95 for 15 pills! To my delight, when I began Epivir the first week of December, though I was hit with pain about an hour after taking it, the pain decreased by evening and I had no ill effects after that. I increased my dose the next week to 2 per day. (Fortunately, my husband’s commission-only business has managed to keep the pills coming!).
A week after that I increased my Equilibrant from 3 to 3½, concerned about increasing it too quickly just before Christmas. I continued to feel amazingly well through December, despite getting a bad cold. I was so thankful to be well enough to prepare for and enjoy Christmas Day at my daughter’s with my family! The day after Christmas I increased Equilibrant to four per day.
A Crash
Then, the New Year’s crash hit, beginning four days after Christmas! A week later, I lowered my Equilibrant back to 31/2, then back down to 3, hoping to find some improvement. I didn’t, so I made a call to Dr. Chia. To my shock, he told me to add Inosine…1 per day then 2 after a week. Needless to say, the thought of this was daunting. But I reminded myself that I am committed to press on in the treatment
Dr. Chia prescribes me. He is the expert, after all!
Improvement Again
Another delightful unexpected, even shocking, surprise! I immediately improved! NOT trial and error…but trial and success! It was an incredible confirmation that just the right combination of treatments is worth all the ups and downs to discover!
Now Inosine works and so does Vicodin!
Despite fighting another cold/cough in January, and my parents requiring more and more help from me, I have done very well! I’ve returned to my “normal” amount of pain, but the Vicodin is helping again! I have also been forcing myself to take 30 minute rests with no tv, no reading, no music, in a dark room, every afternoon whether I feel like I need it or not. (Something you would think after 20 years I would have already been doing!)
I delayed the blood tests (CBC and metabolic panel) Dr. Chia ordered, as well as my next appointment, since my medical insurance didn’t begin until February 1st. I don’t know yet what the tests have now shown him and whether or not he will keep me on the Epivir and Inosine. I am expecting a return call from him this week.
Enteroviruses, Lipkin, Stem Cells and New Drugs
Now, to some interesting information Dr. Chia shared at my November appointment:
Dr. Chia will give two talks and present one poster at the IACFS/ME conference
He talked about the IACFS/ME meeting in San Francisco in March, where he will be showing his poster of his 2007 study showing enteroviruses as the cause of ME/CFS. I admire and appreciate his tenacity. At the meetings in 2007 and 2011, no one stopped to check out his poster! He is concerned that attendees may only be interested in what they already understand about this illness. He always seems sad about the reception of his research because he is absolutely convinced the viral cause (along with genetic and stress factors) of ME/CFS is enterovirus.
He commented on the stem cell infusion research in Panama that revealed that stem cells do not help ME/CFS
While praising Dr. Ian Lipkin and his work, he suggested that a study using whole blood, not just plasma, would have been more conclusive. Dr. Chia had shown this in 2005 when a study he did found enterovirus in 60% of white blood cells versus only 10% in plasma.
Christine – pressing on
He has talked in the past about a possible Hep C drug which, he said, is the only one that works for RNA viruses. It is currently $20,000 per month. He has four patients that have the funds and the willingness to try it. Dr. Chia hopes to have a clinical trial in a year if three of these four patients respond well.
In his hunt for enteroviruses in body tissues, he has found them in fallopian tubes and in testicular tubes (of cadavers, I think he said). He believes this may have something to do with autism and its link to ME/CFS. Very interesting!
I realized toward the end of my appointment with Dr. Chia that the question I had come armed with, regarding hope for my improvement, was unnecessary. With a new treatment for me and other new treatments on the horizon, he clearly has not given up hope for my improvement…so why should I? After all…outcomes are not always disappointing. Sometimes they are delightfully positive.
So I press on…not doing perfectly, but better…to my next appointment in March.
Great to hear Christine – wishing you continued success. I sure hope Corinne and Carol will also find relief with something, as well as all of us who are searching. It’s very discouraging that nobody looked at Dr. Chia’s poster – you’d think the researchers would want to exchange ideas…….
I too hope that Carol and Corrine…and all that suffer with this disease will find relief…if not a cure. I am very blessed to be under Dr. Chia’s expert and compassionate care.
Thanks for reading, Betsy. I do hope others are encouraged by this. I am very grateful to be functioning at 35-40%. I forget that sometimes in the down days!
Christine
What a wonderful positive post to read Christine. I sincerely hope that the treatments you are following continue to work and wish you every success for your future.
Can I just ask if you are in the USA? I am in the UK and have never been offered any kind of treatment for my pain. Hopefully, one day, the results from treatment such as yours will be so conclusive that they cannot be ignored. Maybe then everyone will be able to take medication to help then get on with their lives.
Thank you for your kind comments, Tisha.
Yes, I live in the USA. I cannot imagine why doctors in the UK would not prescribe you anything for pain! Though they do not offer them, can you ask for them? Is there any appeal you can make if they refuse?
There are docs in the US who are not prescribing opiates because of the concern about abuse of these drugs. I find that difficult to understand as well, since they are very regulated.
I will pray you are able to get pain medication that will help you.
Christine
Have you ever tried LOW DOSE NALTREXONE? It was recommeded by Dr. Klimas for my pain and it saved my life!
Isn’t that amazing? It’s Dr. Klimas first choice for pain. We’re going to have another LDN blog coming up…:)
Just wanted to chime in about the Low Dose Naltrexone. I have been on it for 3 months now .
My medicaid doc knew Nothing about it , but was open to experimenting with me when i brought him some info. There is SO much info about in on the web, and the side effects are almost Nil. It has helped me quite a bit! I have less pain, and I am in Much better moods!
I Praise God!
Congratulations Ingrid. Thanks for passing the info on.
Dr. Chia prescribed it for me at my first visit a year ago, but because it is an opioid receptor antagonist I didn’t take it. After reading Cort’s article about it, I asked him at my next appointment if I should stop Vicodin and take it instead he advised me not to do so. I don’t take a lot of Vicodin…only when I need it, so this may have influenced his advice.
I appreciate you bringing to my attention, Francesca. By the way, I looked at your website and would love to hear more of your story. You are an incredibly gifted artist!
Blessings,
Christine
Keep in mind that LDN doesn’t only help pain. It’s an immunomodulator so it treats the actual disease process. For me LDN stopped my rapidly progressive CFS/ME from progressing seven years ago, restored a lot of functionality and pretty much got rid of PEM. That’s why many CFS/ME experts consider it a first-line treatment.
Hi Christine…I have recently been able to GO OFF of Vicoden after 10 years of usage ..8-10 a day. I went to a doc up in N. California who specializes in pain and he told he how horrible the Vicoden (Norco) is for making pain WORSE…and he wanted me OFF of it… I said … GLADLY…but I will need a gun! He said try this other drug and lets see how you do…. It is a drug called Subutex and is usually used in the US only for Opiate and Heroin withdrawal…however it is used widely in Europe for NERVE PAIN… Girl I can only imagine howww much better you will be if you are able to get OFF the opiates all together! I am sleeping better than I have in 30 years on ONE PILL of the Subutex a Day vs 10 Norco… After starting the Subutes I had a remission…I was on cloud 9!
But….the miserable viral beast is back just kicking my ass… I could sleep 24 hours a day…but soooooo GLAD I have this new drug…bc normally in a flare this horrible 20 Norco a day wouldn’t have been even close to enuf. I am in pain but not like before… My pain used to be a 8-10 daily and now it is a 4 and on flare days a 6 or so.
I hope you can tell Dr. Chia abt this drug or call my doc about it (Dr Madill – Sebastapol Ca)…I sure wish more docs knew of its powers vs the horribly addicitive opiates…that literally cause MORE pain…. Crazy stuff.
I am how every quite envious of your success…as I sit here in tears with this unending viral crap just stealing my life from me….
Keep us posted…..
Jacque
Jacque,
So sorry you are having a tough time. I just came off of a 2-day crash, which wasn’t long at all, but not knowing that when I was in it, I got discouraged. It’s a continual battle, isn’t it?
Thank you for mentioning Subutex. I’m so glad you have gotten relief from it. I will definitely look into it. I don’t take a lot of Vicodin. At most, I take 4-a-day…and sometimes none. But it isn’t always effective. My prescription is very restrictive, which is good because I certainly don’t need addiction on top of ME/CFS!
You must live in Northern California. I’m a SoCal girl. We are in a heat wave while the rest of the country is freezing!
Hope tomorrow is a better day for you,
Christine
“He [Dr Chia] always seems sad about the reception of his research because he is absolutely convinced the viral cause (along with genetic and stress factors) of ME/CFS is enterovirus.”
I am also very upset that nobody has yet taken up and furthered Dr Chia’s incredible enterovirus research. Dr Chia’s research replicated the work of the early British ME/CFS researchers, who also found enterovirus in ME/CFS patients (much of this British work was published in the early 1990s). So Dr Chia’s studies confirmed and further strengthened the link between ME/CFS and enteroviruses, establishing enterovirus as THE major pathogen of ME/CFS.
Yet the reception to Dr Chia’s research has been minimal. This general lack of interest in following up Chia’s research is really appalling, and inexplicable.
It is imperative that other groups of researchers follow up on this enterovirus research.
REFERENCES: Some of the early British research on enteroviruses in ME/CFS:
http://www.ncbi.nlm.nih.gov/pubmed/6310105
http://www.ncbi.nlm.nih.gov/pubmed/6310104
http://www.ncbi.nlm.nih.gov/pubmed/6319692
http://www.ncbi.nlm.nih.gov/pubmed/2841461
http://www.ncbi.nlm.nih.gov/pubmed/2161907
http://www.ncbi.nlm.nih.gov/pubmed/2170962
http://www.ncbi.nlm.nih.gov/pubmed/1850635
http://www.ncbi.nlm.nih.gov/pubmed/1665379
http://www.ncbi.nlm.nih.gov/pubmed/8409778
http://www.ncbi.nlm.nih.gov/pubmed/8148439
http://www.ncbi.nlm.nih.gov/pubmed/8172448
http://www.ncbi.nlm.nih.gov/pubmed/7775934
http://www.ncbi.nlm.nih.gov/pubmed/9049375
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0112a&L=co-cure&F=&S=&P=62
By the way, Christine, what mg dosage of Epivir (lamivudine) is found in each of your Epivir tablets?
I agree that the lack of followup for Dr. Chia’s work has been very puzzling. It certainly got a lot of attention within our community but no followup! I think it more speaks to the size of the research field and the lack of funds available than anything else. In another field it would have gotten followed up on.
Hi Hip!
I was aware there had been a British study regarding enteroviruses. I think Dr. Chia mentioned it. Thanks for all the info. I will check it out.
I don’t understand why his research doesn’t seem to be taken seriously, especially when so many researchers believe there is a viral trigger. Maybe we don’t all have the same trigger, but checking for enteroviruses just makes sense.
The Epivir I take is 150 mgs per tablet. I take 2 per day. I got a call from
Dr. C’s office today saying my blood tests looked good and to stay on the same regimen till I see him next month.
Thanks again for all the info!
Christine
Puzzling or deliberate? I read somewhere ages ago, that there’s no money to be made from going down this route, if the theory was to be proved correct ie that a type of enterovirus infection gets to the CNS via the muscles. It’s permanent disability, even if it can be treated.
It would prove Ramsay right though.
I agree. The answer to a lot, if not all, of the questions about interest in and funding of ME/CFS research is to “follow the money”, to quote my friend. Very sad, indeed.
Does anyone know if there is a relationship between enteroviruses and gluten sensitivity?
Also, how are enteroviruses diagnosed?
Hi Laura!
I have never heard that there is a connection, I’m do believe Dr. Chia would have mentioned it If the re is. One of the blessings of my appointments with him is he is always generous to educate me!
Enteroviruses are definitively diagnosed through biopsy, most often of stomach tissue. Enteroviruses can be in, and apparently travel to, anywhere in the body. Dr. C’s theory is that this is what causes the multiplied symptoms in ME/CFS, i.e., sleep issues, neuropathy pain, cognitive problems, diverticulitis (in my case, anyway). But biopsy are not practical or even possible in all these organs. Because my initial blood tests showed enteroviruses infection, Dr. C did not require me to have a biopsy. (See my first blog post.). He said the treatment wouldn’t change with a definitive biopsy.
Hope this helps!
Christine
As Christine says, chronic enterovirus infections in ME/CFS are diagnosed by Dr Chia using a stomach biopsy.
However, more simply, you can also provide a blood sample, and get the Micro-Neutralization Test at ARUP Labs, which is the only commercial blood test sensitive enough to detect chronic enterovirus infections.
Dr Chia uses this ARUP test too.
More info on both tests here:
http://www.enterovirusfoundation.org/chronicinfections.shtml
I don’t think Dr. C patients have the biopsies as a rule because the blood tests are more reliable, done by the right lab. It’s my understanding from what he has told me, it is irrelevant if the enteroviruses are active because they can reactivate, replicate, and spread very rapidly throughout the body. The use of antivirals is to keep them tamped down…to stop the viral chain.
Be sure also to check our Dr. Chia’s website too
http://evmedresearch.com
Thanks for the info, Hip!
What I intended to say here is that blood tests are more reliable than they used to be if the right lab is doing the analyzing. Of course biopsies are the definitive tests to discover enteroviruses.
I had the stomach biopsy as I was due a colonoscopy and the 2 are fairly easily done at the same time. I do have double-stranded RNA enterovirus infection in my stomach tissue, as well as my blood. Unfortunately Dr Chia’s methodology has not yet found the right combo for me, and I have been seeing him for several years now – at Dr Montoya’s initial recommendation. This is not to put Dr Chia down in any way – he is most caring, most knowledgable, and a good listener – all hallmarks of a great doctor. It is to point out that even though we may have the same viruses, and same diagnosis, we do not all respond the same way to the same treatment. Dr Chia told me that he has about 50% success rate with people showing substantative improvement. I am glad that you are one of them 🙂 It is such a good feeling to read other peoples success stories – it gives hope to the rest of us. As for me I am crossing my fingers for the 4 patients on the new test he is doing….
Helen, may I ask did you try epivir as well? But with no success presumably, if so. Many thanks
I do not believe that one virus like enterovirus is the cause for ME/CFS. There are multiinfections like EBV, CMV, HHV^6 and entero ect…. For me the cause must be in controlling these infections. Why can they grow to a low grade state of inflamation time after time and constantly….?
@Gijs
Using just simple logic, it is easy to prove that herpes family viruses such as HHV-6 and EBV CANNOT be the triggering viruses of ME/CFS.
You can exclude these herpes family viruses from being the triggering infections that precipitate ME/CFS simply by the following facts and logic:
(a) ME/CFS most frequently develops in adults, and:
(b) Nearly all adults will already have HHV-6 and EBV in their body, since HHV-6 is usually picked up before you are 3 years old, and EBV is usually picked up in the teenage years. Therefore, when an ME/CFS patient observes that they caught some new virus that precipitated their ME/CFS (and many observe this), it is very unlikely to ever be HHV-6 and EBV, since the majority of adults already have these two viruses in their body already.
I am not sure why ME/CFS researchers have overlooked this basic logic, which generally rules out HHV-6 and EBV as being the triggering viruses of ME/CFS.
Of course, the HHV-6 and EBV already in your body may be reactivated by the immunosuppression of ME/CFS, and their reactivation may then contribute to ME/CFS symptoms. So it is still a good idea to take anti-herpes drugs if you have active infections of one or more of these herpes family viruses. But in general, logic dictates that HHV-6 and EBV cannot be the triggering viruses of ME/CFS that you catch as a adult.
Enteroviruses such as coxsackievirus B and echovirus are a different story, because although one or two of these may be caught early in life, there are in fact 6 serotypes of coxsackievirus B (not to mention the various sub-strains of each serotype), and there are 32 echovirus serotypes, so you can certainly catch a nasty enterovirus infection later in life as an adult, even if you caught one earlier, say as a child.
If HHV-6 were a main triggering virus of ME/CFS, then we would see most cases of ME/CFS appearing in babies of the ago 0 to 3 years old, since that is the period were the vast majority of people pick up HHV-6.
Likewise, if EBV were a main triggering virus of ME/CFS, then we would see most cases of ME/CFS appearing in the teenage years, when most people pick up EBV (usually from kissing one of their teenage girlfriends or boyfriends — hence the name “kissing disease” for mononucleosis).
Though EBV is a special case. It is known that some people develop chronic infections when they first catch EBV, and the symptoms of those chronic EBV infections can be pretty much identical to ME/CFS, even though these EBV infection do often clear up after a year or so. (In fact, I often suspect that people who say that they were cured of their ME/CFS after just a few years probably only had EBV-driven ME/CFS symptoms in the first place, which as stated, tend to clear up anyway).
So since we can use the above logic to rule out HHV-6 and EBV as the main triggering viruses of ME/CFS, we need to look at enteroviruses more closely as the likely cause of ME/CFS in the majority of cases.
I am not sure if you are right. You know this new study?
Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0085387
Many cases of CFS begin with EBV.
As far as we know, there are two types of viruses involved in ME.
EBV and friends compromise the immune response to an enteroviral infection.
It seems that for whatever good reason, biopsies are not necessary for Chia to still believe in this reactivation. Whatever blood testing he is using to reveal infections has not thus far been revealed by Lipkin’s work. As Chia himself said in the article, it could be that Lipkin’s work on white blood cells – and not plasma – will reveal these active infections. But what if they don’t? And does this imply that Chia own testing is only on white blood cells? If Lipkin’s future study reveals still no pathogens, it will then be even more incumbent upon Chia to prove why he is detecting something that Lipkin is not: and to explain why he still believes enterovirus in tissue is still present, even when the patients he is treating have not had biopsies in all cases. Are we talking again about individuals, or about a cause for ME itself? Hard to say why nobody has tried to replicate – there are enough ME experts in America who do research.
Enteroviruses have long been seen as a trigger, but as I don’t know enough to be able to say with any confidence, that these reactivated viruses can be treated… I say treated, because I presume Chia’s treatments are successful – though I think Catherine has only noted some improvement.
So there is another issue to address – the success or not of any prescribed treatment especially when the same testing is not being done for all people he treats with ME. I wonder to what extent these viruses are present only because of the measure to which they are counted?
Was KDM only testing white blood cells too? Was Chia? Are we coming to the point where e.g. Chia and KDM will have to get their testing methods validated independently just like we pleaded with WPI and their laboratory to do over the XMRV commercial test-kit?
I hope Chia is afforded the opportunity to test his original study. And I hope that Lipkin is able and willing to repeat for Chia what he did for Lombardi and Mikovits.
Dr Chia is one of the best docs and scientists in our field. He and Dr Lerner are the only infectious disease docs actually treating patients, I follow their work closely. The immune abnormalities seen in ME/CFS beg for their approach,viruses should be reactivated, and Dr Chia is right to worry that the work look at as many “compartments” as possible – blood, gut etc. Dr Lipkin is aware and trying to get specimens, we’ll see what he has to say in March. I am looking forward to the conference next month, Dr Chia always changes our group’s standard of care with his presentations, I want to hear more about epivir.
The discussion on opiate use was interesting. Subutex is used for a short while then long term followed by suboxone, which has the same ingredient mixed with….wait for it…..low dose naltrexone. Only it costs a whole lot of money, LDN is about $35/month. So, while I can see why the main ingredient in subutex, buprenorphine hydrochloride, would be great for pain management in the setting of prior long term opiate use , I would think once the transition was complete, a run with LDN might be worth a try. Just my two cents.
Cort, keep up the good work.
And all you bloggers sign up on pay pal and donate $5 a month to this very excellent resource.
So nice to hear from Nancy! Thanks 🙂
So glad to have a very respected Clinician weigh in on this conversation. ???During my last appointment with Dr. Chia in June 2020 he mentioned how few ME reseAs wonderful as researchers don’t work with actual MECFS patients. He told me that Lipkin has not worked with patients in many years. After being a patient of Dr Chia’s for only 14 months I am improving. My MD follows Dr Chia’s lab protocol which is been very very helpful.
I started with the Russian rejuvenator which is purest form of large tree extract known as dihydroquercitin. Just one per day for the first month and then increasing to two per day. (Swanson.com) This has kept me from having vertigo with vomiting when I raise my head. Also cleanses liver among many other things…
I then began Equillibrant. I’ve Only been able to tolerate very low doses but my Coxsackie B1 thriugh 6 Titres And chlamydia pneumonia titers are going down as well as of June 2O20 labs.
Just seven weeks ago I started Lamuvidine. It was kind of rough as I experienced an exacerbation of many ME symptoms (largely muscle weakness/fatigue and extreme emotional lability) And I had to decrease the dosage significantly BUT I Have experienced tremendous improvement. It has only been 15 days but every day I feel better.
Before the Lamuvidine, I could only walk five minutes a day before my heart rate would spike 30 bpm. I can now walk for 25 minutes straight. I have a lot more mental clarity. I feel like I got my brain back. I can read for more than two hours a day. I can hold my phone up with my arms in bed for more than 10 minutes even an hour without my arms getting weak. I no longer have to slow the speed of Utube videos. Lessened sound sensitivity. My chemical sensitivities are much improved. Although I’m still resting a couple times a day for at least 30 minutes, I seem to be not having much PEN at all. !!?!! Today I put a fitted sheet on my bed and I pruned some rosebushes for 15 minutes. I would rate myself 30-40% better so I’m about 60-70% functional up from about 25-30%
I do have several Co morbid Conditions: Hypothyroid, multiple whiplashes from car accidents, Hypogammaglobulinemia, cervical instability, IBS, SigAd, Extensive environmental allergies (very high eosinophils) and Keratoconus.
Although I had to stop the Lamuvidine, I will now be able to tolerate more Equillibrant.
I also have an MD who treats all my conditions. He is an amazing practitioner who I’ve been going to for 31 years.
Per his advice I take:
B-Right (Amazon)
Afternoon “Cocktail”:
15 ml VIOBIN Cod Liver oil plus
15 ml VIOBIN Wheat germ oil
30 ml Qunol (Costco)
Vitamin Shoppe Omega 3’s x2
Vit D3 2000 IU
3 months ago cut out sugar and most carbs. Carbs feed the bacteria/virus. I’m just now getting that!!! Aiming for a mostly Paleo/partial keto diet.
I’ve also had physical therapy, chiropractic treatment , massage therapy, cranio-sacral therapy and I live by a natural mineral hit springs which does amazing things for my body in so many ways.
Just 6 days ago began taking collagen peptides with 4 essential amino acids. This has corrected a lightheaded/uneasy feeling I had in my occipital area. I plan to add whey protein.
I just got Dr. Sarah Myhill’s newly revised book in which she addresses every single aspect of MECFS. It’s like a blueprint for how to treat ME. I’ve also watched Dr. Charles Lapp’s presentations in Utube, DrChia’s presentations and ALL of his research articles and read J Teutelbaum’s protocols.
Dr Chia’s research shows evidence of the virus living inside the tissues from the brain of an ME/CFS patient who died and the family donated his body??.
This man has worked tirelessly for 3O+ years to greatly improve the lives of ME/CFS sufferers. He had an opportunity to work in another area that would have given him a lot more recognition and accolades.
Again, I’m new here. I’m not posting anything to try to persuade you to do what I’m doing. IHope that someone can be helped from what I have shared. Two months ago I had accepted And made peace with living at only 25% of the energy that I used to have. I couldn’t tolerate antidepressants And sleep medications. So yes. I’ve Experimented with supplements and adjusted dosages but it has been within the parameters of the recent lab results And the direction of my MD and Dr Chia.
Thanks so much for reporting your complete protocol Sandi and congratulations for your improvement.
Good luck with your search for further improvement 🙂
Hello Sandi – That’s a really interesting post – Just wondering how you are doing now and if your protocol changed at all.
I’m specifically interested if have any information on Coxsackie B treatment.
Thank you so much for weighing in, Dr. Klimas! It’s worth a while lot more than 2 cents! I will talk with Dr. Chia about LDN at my appointment next month.
I am very grateful for your research as you stand in the gap for us!
Christine
I’m both a physician and a new patient of Dr. Chia, and I’m now disabled. I also have extensive 2+ Enterovirus in my stomach biopsy. I am appalled that Chia’s work with this virus, which furthered the findings of previous British studies, has not been completely followed through by Virologists as done with XMRV. Even Dr. Komoroff in his conference synopsis voiced this, and Cox B has long been identified as causing Endocarditis by invading the heart.
Check this blog, where Chris reports that he recenly learned Lipkin is currently unaware of Chia.
http://cfspatientadvocate.blogspot.com/2014/03/dr-jose-montoya-and-stanford-mecfs.html
This is beyond upsetting, and is close to incompetence. Lipkin, is a microbe hunter, and Dr Chia, is one of a few Infectious Dis. docs with published results (2007), and Lipkin never heard of Chia’s work with enteroviruses? This is shocking; I found it doing a search of CFS and viral studies in 5 minutes. All researchers should not only know about the existing work, but form a current Infectious Disase Task Force (with Lerner, Montoya, and Enterovirologists, etc.) to pool funds and take each agent suspected to the distance to establish causation. People are dying of this disease; crap, I can hardly finish typing this. These guys need to be real scientists, not egomaniacs. Now, if Chia picked up the phone to Lipkin, etc, that might help push his work too.
So, is anyone aware of any new tissue information Dr. Chia just reported at the SF 2014 conference a few weeks ago? I learned he was reporting a new finding. Also, does anyone know if he finally met with Lipkin and others there to further discuss his work?
Thank you for this link and your comments Geoff. I saw Dr. Chia at the beginning of March. He said he would be focusing on talking with other researchers rather than with patients, as he usually does. He mentioned Dr. Lipkin specifically, even going a day earlier than he had planned because Dr. Lipkin’s Q & A was rescheduled for Thursday.
At the conference he was planning to present his findings of enteroviruses in the fallopian tubes of a patient who had donated her body to his research. I’m sure reports by those who attended will give clearer information…this is what he told me at my appointment. He believes this may be the link between ME/CFS and autism. I am not sure if he has found this in more than one cadaver. I believe he also found enteroviruses in the vas of a male patient as well. He wonders if infection of the ovum or sperm could cause autism in the fetus.
I also cannot understand why he seems to dismissed by the other researchers when his findings have been so definitive. He believes ME/CFS is curable if an antiviral for enteroviruses can be developed, which he is seeking to do but can only take it so far until there is funding for this project.
One of the blessings of being his patient, as I’m sure you have discovered, is that he gives his current insights and discoveries as a bonus at every appointment. His respect for his patients is invaluable.
Hoping to learn more about his conference experience as others write about it, and then when I see him at my next appointment in June. I hope to get my post up next week regarding my March appointment.
Appreciate you passing on Chris’ comments to us.
Christine
Dear Mrs.Christine,
I appreciate your comments on Dr.Chia very much.Can you tell me how long to take an appointm.with him ? Has he mail to contact his office ?
I have HHV6 and EBV do you think he can treat me ?
I thank you for your reply, I live in Italy and I am 27years old.
Anna
Anna it doesn’t look like anyone replied to you sadly. Dr Chia requires specific lab work before he will see you. So all you have to do is call them and arrange the lab work to be done. I was originally told I couldn’t get appointment for two years but when I got the lab work done they called me right away and I got an appointment very quickly.
Sadly, I don’t believe he does video appointments. I think he wants to see you in person because he tries to locate where the virus is Prevalent in your body by doing a physical exam and of course he takes blood as well. After you are in established patient you might be able to consult with him by phone for a fee. As a current patient, I was told I could do a phone appointment for a fee. He does not accept my insurance for this so I make the 5 Hour drive from the Central Coast of California