by Cort Johnson | Jun 20, 2015 | Homepage | 114 comments
I had my coffee, read the paper, had another cup of coffee, read the computer and by8:30or so I was raring to go!
Greg was a healthy and active professional until he woke up from a nap one ordinary day and could hardly move.
My “life” with ME/CFS began when I was 54 in the summer of 2007. I was a healthy, active Veterinarian, in a group private practice working four ten hour days a week. My only health problems were GERD, and a cranky lower back I’d had since my mid-twenties. I’d not had a day off from work due to illness in seven years.
I worked out each day before work, spent my free days helping take care of my widowed elderly mother, taking walks with my wife and dogs, playing lots of golf and working around the house on our garden and various projects. It was July and I was getting ready for my now annual week plus trip to Truckee to play in an invitational golf tournament with an old college friend. Then it was onto Lake Tahoe to visit old high school friends to hike in desolation wilderness.
Suddenly Greg’s health fell apart.
For the last few weeks I’d experienced some unusual stools. My wife had also had the same problem but she recovered. (My wife had been diagnosed with ME/CFS 17 years ago but then it was discovered she had Hashimoto’s and later developed thyroid cancer so the diagnosis remains “muddy”.) In any case, after working hard on my golf game, I came homeMondayafternoon, lay down on the couch and talked to my wife. Then she went out to her art studio.
I “awoke” about an hour later from the first and only nap of my life, on July 23, 2007 around 2:30. I felt like I was buried in quick sand – I couldn’t get off the couch! After some time and effort I got up, made some coffee, talked to my wife and slowly recovered. I woke up in the morning feeling horrible, went to work, and as the day progressed got a bit better. This pattern continued until I finally had to stop working and take a long weekend to “recover”.
The next week I went to my doctor, at Kaiser, an internist I had a great relationship with, and whom I felt practiced good medicine. He listened, then felt because of my vague symptoms, and age, that we had to at least begin a “cancer search”. We would go step by step and hope it was just something passing, and I’d soon be better. So on came the blood test, stool tests, Chest X-Ray, some tests for Lymes, Western Nile, etc. Everything of course came back “normal” but I continued to languish, and then the headaches started!
More tests including titers recommended by an infectious disease doctor, a CT of my Brain and whole body revealed very minor abnormalities – nothing which could explain my worsening symptoms. By now I could no longer work.
My internist then scheduled appointments with the infectious disease doctor, the neurologists and an endocrinologist. After the ensuing workup -which took six months – found only minor abnormalities again, my doctor gave me the dreaded diagnosis – ME/CFS.
Because there was no “specialist” at Kaiser they allowed and paid for me to see Dr. Montoya at Stanford. Having dealt with my father with brain cancer at UCSF I knew how to work the system and rather than waiting “two years” I had an appointment within a month. I saw Dr. Montoya for about four years. After going through two courses of Valgancyclovir, first at the usual dose, than at a double dose, I at first started to get better but by 2011 was seriously starting to decline. Dr. Montoya was out of ideas and seemed to be disinterested as well!
It seemed at first that I was having a fairly normal case of ME/CFS. I had gotten really, really sick, and then over about a year and a half returned to about 15-20% of my normal self. I could walk about a half mile morning and evening, do house work if it was spaced out and I rested, and have other “normal” activities, but I still had to stay away from crowded areas, etc… and limit my activities or I would experience PEM. In hindsight, though, I had a pretty good life.
In 2009, however, while still seeing Dr Montoya my health suddenly declined. Instead of 15-20% of normal I was at 10% normal. I had to be very careful with activities, was only able to take short walks and was doing less and less over time.
By 2011 I was essentially housebound. Dr Montoya, being essentially an infectious disease specialist wanted me to try an AIDS co*cktail, but I was unwilling so I struck out on my own.
Working with my own physician I had a routine panel, plus some other tests done which were all normal. She was ready to call it quits but I insisted on further tests. I saw a sleep doctor, but my tests were essentially normal. Then despite both my doctors and the cardiologists recommendations I forced them to do a full cardiac workup.
They were shocked when the test indicated I had a dilated cardiomyopathy (DCM) with a decreased ejection fraction that partially explained my decrease in energy. Unfortunately, they could not determine a cause nor could they treat me since any treatment they provided would decrease my normal blood pressure to levels that left me both light headed and nauseous.
I contacted both Dr Montoya and the Simmaron Institute because they were conducting a study on DCM in ME/CFS patients but essentially got no help. At this point I got an email from Dr Bateman responding to a request for a Skype consult from about 6 months before.
At that point I became her “patient” and underwent more tests while changing my medications including antidepressants. All the tests, e.g. hepatitis C, stool cultures, were normal. I did very poorly on all the medication changes and I seemed to make her uncomfortable because of my extreme depression.
She recommended a cardiac biopsy, but a second consult with a cardiologist would mean I would have to go to Stanford for a procedure. Having recently gotten sick for 3 weeks after an early morning blood test appointment I was reluctant to do that. I also was fully aware that a biopsy would be meaningless unless you knew what you wanted to test for. I contacted Dr. Montoya, but as usual, got nowhere (communication is impossible as his “clinic” is really a 1/2 day a week, among all his other responsibilities).
Finally in desperation Dr Bateman offered to let me try a treatment she was using on one other patient that had been created by Dr. Pridgen for Fibromyalgia. His theory was that Herpes Virus 1 was the cause of multiple diseases like Fibro, CFS, Inflammatory Bowel, etc.
Greg’s unusual response to the Pridgen Protocol included insomnia – and increased energy
His treatment involved 200 mg of Famicyclovir twice daily and 200 mg of Celebrex twice daily. Her other patient was responding quite well, but was beginning to have elevated renal parameters. Like all COX-2 inhibitors using Celebrex with heart conditions is questionable, but I felt I really had nothing to lose at that point.
I tried the treatment for about a week, but despite having a bit better energy than normal, had terrible insomnia. Dr Bateman suggested trying to manipulate the schedule of the drugs which was unsuccessful and I ended up giving up on the treatment. The insomnia remained for about a week longer, as well as the increased energy, and eventually I returned to “normal”- which consisted of an unbearable headache in the morning with a 2-3 hour wake up period, no life, house bound and continual fear and realization of PEM.
My wife and I remembered that extra energy though. What could have been causing that? The antivirals I’d been on had had little effect. So we thought, why not try just the Celebrex by itself?
I started slowly – just one pill (200 mgs.) in the morning. The next day I woke up at6:30rather than8:00, lay in bed listening to my wife mill around making breakfast etc. until I couldn’t take it and got up at 7. No headache! I had my coffee, read the paper, had another cup of coffee, read the computer and by8:30or so I was raring to go!
Celebrex unexpectedly worked – for awhile
This has continued for the last 5 months. I haven’t had a single incidence of PEM. I still take it easy and I have had periods where my headache has reared up for a few days. I’ve had a few times when I’ve been over active for 4-5 days in a row and feel tired so I have to take it easy for a few days to recover, but that’s about it.
I returned to building furniture, playing guitar with my best friend, doing light gardening. I am nowhere near where I was in 2009, but I have a “mini life” again. I can make lists of things I want to do and pretty much get them done every day. I go out for coffee or to lunch once in a while even.
Then the bottom dropped out. I’d been in touch with Greg a couple of months after his improvement started. About six months in he informed me, it had suddenly ended.
Greg is apparently in that mysterious “suddenly” category. He suddenly came down with ME/CFS, Celebrex had very quickly improved his fatigue and depression ME/CFS, and then, unfortunately, suddenly the improvements stopped.
He reported with“unbearable sadness that his mini-life was suddenly over”. He was home-bound and heading to being bedbound again. He said he couldn’t walk 200 yards without crashing and ending up in bed for a week. His constant headaches worsen, unfortunately, when he’s lying down.Upping the dose had no effect.
Like many others, Greg has a complex case of ME/CFS. His idiopathic cardiomyopathy is suggestive of a viral attack yet antivirals did not help, and, in fact his health declined while on them. Celexicob helped for a time, but how, is unclear. It could have reduced inflammation in the central nervous system or the heart or elsewhere.
As in many complex cases of ME/CFS why the treatment worked and then why it failed to work is a mystery
Mice studies suggest Celebrex is a microglial inhibitor and dopamine inducer. It’s ability to increase dopamine production is intriguing, given Miller’s findings of reduced dopamine/basal ganglia activity in ME/CFS. Problems with the basal ganglia – the reward center of the brain – could produce both fatigue and depression. Celexicob apparently has antiviral properties as well.
That anti-inflammatories might be able to reduce fatigue, post-exertional malaise and depression in some patients is not surprising. Dr. Maes has proposed some similar pathophysiological pathways underlie both ME/CFS and depression.
If ME/CFS turns out to be an inflammatory disorder there will undoubtedly be increased interest in using anti-inflammatories to treat the fatigue, depression, cognitive and other problems present.
A number are being looked at. Jarred Younger is testing approximately 20 different microglial/inflammation inhibitors in his lab. Dr. Montoya – whose upcoming studies will reportedly emphasize the inflammatory component of ME/CFS – has reportedly used plaquenil, an antimalarial drug also used to treat rheumatoid arthritis, and colchicine, a gout anti-inflammatory and anti-IBS agent, effectively in some patients. Dr. Klimas is reportedly looking at TNF-a inhibitors in some patients. Enhancing the gut flora and anti-inflammatory diets are other possible pathways to reduced inflammation, improved mood and increased energy.
With regards to the depression often found alongside fibromyalgia and ME,CFS, inflammation is probably a factor in some cases. It’s clear now that increased levels of pro-inflammatory cytokines are present in a subset of people experiencing depression. A meta-review of 14 anti-inflammatory and depression trials suggests that anti-inflammatories, in particular, Celebrex may help. (No evidence of significant side-effects were seen in the Celebrex trials.)
Both an antibiotic, minocycline and a cytokine blocker (infliximab – TNF-a) blocked depressive-like behaviors in a mouse model of chronic stress at least partially, by blocking inflammatory processes involved in the kynurenine pathway.
Ketamine may be the most novel anti-inflammatory/anti-depressant drug under consideration. This anesthetic and NMDA-receptor antagonist appears to attack inflammation at a variety of levels including halting inflammatory cell recruitment and pro-inflammatory cytokine production (TNF-a, IL-6). It also works extremely rapidly.
Ketamine in its present form may not be readily available but drug companies are reportedly working hard on producing ketamine analogues that will be more available. Ketamine and it’s future iterations present the possibility of drugs that are effective against both pain and depression.
Have you benefitted from anti-inflammatories and, if so, how?
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Debbieon June 20, 2015 at 10:08 am
While taking indomethacin for a toe swelling issue-all of my symptoms improved. I felt so much better on it. After that I would take it when I had a bad day or severe headache and it always helped. Dr. didn’t want me to stay on it daily long term due to the possibility of damage to stomach etc. Tried Celebrex and other less potent NSAIDS without the same type of benefit.
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Amyon November 4, 2022 at 3:27 pm
Thank you for your story. I’m in Kaiser and currently high and dry as they won’t refer me to a CFS specialist for diagnosis. My ND has been managing my care. I read a recent Mayo Clinic journal article that included Dr. Bateman and several other health care providers, recommending Celebrex. I’m on a 50 mg 1x per day does and having immediate improvement. It’s interesting to read your experience. Do you identify any triggers that resulted in the ceased improvement? Did you work part-time or full-time when you became better. Thank you for your time.
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Amyon November 9, 2022 at 9:58 am
Response to my use of celebrex–it caused heart palpitations and felt as though my heart was working harder so stopped unfortunately.
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Terryon June 20, 2015 at 10:18 am
Inflammation is a large part of my problem, especially with headaches & in joints.
Celebrex in generic form did nothing for me. Has anyone tried the generic vs brand name? I wonder if I should pony up $150 for the brand name . . .
Other than than that minocycline has helped, but GI symptoms are causing me to give it up. Curcumin helps but does not clear inflammation. Various other herbs help but then I seem to “reset” back to original inflammation point.
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Debbieon June 20, 2015 at 10:42 am
Terry,
I used the brand name Celebrex and did nothing on it’s own but haven’t tried generic. Celebrex per Dr. Pridgen’s antiviral protocol provided significant pain relief but haven’t been on the combo long term yet.Reply
Matthiason June 20, 2015 at 4:40 pm
Yep curcumin has helped me, especially with regard to being able to better do some light intensity weights…it seems I have a lot less muscle soreness and far better recovery on it. It’s all coming back to the inflammatory nature of CFS. .
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Annon June 22, 2015 at 3:48 pm
This sounds like classic mold poisoning to me. There are lab tests to confirm, and there are treatments, but the process is not well-accepted yet, and you’ll have a VERY hard time finding a physician who knows anything about it. Poisonings of all kinds can cause the symptoms you have, but mold is very common and certain toxic kinds can cause poisonings in even very small amounts with chronic exposure. It will cause dysfunction of the immune system which is why viruses are often thought to be the cause, but they are not. High viral titers are simply bioindicators of a much larger problem.
“Idiopathic” means they don’t know the cause, but it’s because they haven’t looked at mold poisoning. Dr. Richie Shoemaker has pioneered the protocol.
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Kenon June 20, 2015 at 11:25 am
I had the same experience with Celebrex and Famcyclovir last summer. After trolling various forums I was able to get my PCP to let me try the combo for 6-9 months. For about 2 months last summer I was feeling pretty good (riding my bike daily). Then it just seemed to stop working.
I’ve been dealing with (undiagnosed) CFS for 2 1/2 years. The only time I really felt great was for about a week when I was given PREDNISONE for a bad chest cold back in March.
Currently using 10mg Viibryd (SSRI) which clears the fog, and 60mg or 125mg Nuvigil as needed for heavy fatigue days. Also, a ton of supplements that don’t seem to do anything (multi-vitamin, methyl B-12, magnesium, calcium, Vitamin D). Waiting for D-ribose and DHEA to come in the mail for my last supplement attempt.
Keep up the great work Cort.
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Cort Johnsonon June 20, 2015 at 11:30 am
Isn’t that something…it works until it doesn’t…
Prednisone – immunosuppressant which I assume means anti-inflammatory. There’s got to be a better way!
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Caroleon June 21, 2015 at 1:16 pm
Cort – I agree on the Prednisone. Just a had a dear friend die that had been on 10 mg of Pred for Asthma.
Because of the Pred she fractured 3 vertebrae in her back. The Pred you know thins out the bones, pulling out the Calcium. She was on Calcium and Vit D, The gave her Morphine and topped it off with Dilauded.
This was to do another test. I spoke with her Wed night last week. Perky
still in some pain.She died during the tests the next morning. They also gave her a blood thinner as her HR went up. She did not have AFIB.
Her BP dropped then her heart stopped.
The Pred is a wonder drug if used correctly-Never heard of someone taking it for a cold.
I am devastated. Her husband was an MD.
To me they could have found what she had with an Ultrasound and x-rays.
Carole
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Mariaon July 11, 2020 at 10:37 pm
OTC naprosyn every 12 hours taken for a thumb injury also reduced the chronic fatigue I have experienced s/p a nasty GI virus 6 years ago. I take L-lysine 1000mg every 12 hours to help prevent cold sores & sinus headaches. When I stopped taking naprosyn d/t GI upset, my fatigue returned.
Equilibrant helped reduce fatigue for many years after my 2014 diagnosis by exclusion of CFS but contains artificial dyes that I’d rather not ingest. I stopped taking Equilibrant several months ago and began taking the primary ingredient, Sophora Flavescens root, as a powder or tea, steeping the root in boiling water. The powder formulation in a smoothie daily seemed to help reduce fatigue although caused some anxiety. The tea also seemed to reduce fatigue but instigate anxiety. I have yet to try Celebrex although it seems worth a try, given my reduced fatigue with naprosyn.
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Cherie BLAKEon August 29, 2020 at 9:57 am
immunosuppresants suppress the immune system. c.f.s. is an overactive immune system just like any other autoimmune disease.
so steroids would also benefit c.f.s sufferers but suppress our immune systems 🙁Reply
Robert Lawsonon June 20, 2015 at 12:01 pm
Ken,
I have found NAC, Acetyl L Carnitine, L Tyrosine, and SAMe most helpful. I also use Alpha Lipoic Acid, CoQ10, and Phosphatidyl serine. Currently able to function fairly well.
RobertReply
Kenon June 20, 2015 at 1:08 pm
Thanks Robert. I forgot I’m using CoQ10 also. I’ll give the others a try. Could you recommend one of those as most useful?
Thankfully, I don’t have symptoms so severe (yet) that have every kept me from work. 3 years ago I was a fit 230 lbs (yep, that’s still heavy) jogging 2-5 miles every other day. I’m also a mechanical repair tech in a steel mill, father of 2, and a 43 year old husband (now 290 lbs). I too have been to about 8 doctors and had every test they can think of. My last visit was to a Rheumatologist that said “..you probably have CFS, but I don’t believe in it.”
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Robert Lawsonon June 20, 2015 at 5:17 pm
Ken,
I have highly reduced symptoms now (I hesitate to use the term remission-not sure it applies to this disease). Not sure what to attribute that to.
I became ill enough to be hospitalized for eight days around two years ago, and saw a phalanx of specialists. Like most everyone else, I got little useful help from the medical establishment, so I studied the lab reports, and read. This site was invaluable as a stimulus to read the research. My decision was to provide myself with mitochondrial and neurological support. I took the above substances along with vitamins, minerals, fish oils, and natural anti-inflammatories for about a year-and-a-half. They helped substantially, but I did not see a measured improvement, it seems I just got vastly better about four months ago. I just finished a complex photo shoot that required strenuous physical effort and eighteen hour days.
Let me know if I can help with info on supplements, dosage, and timing. NAC, Acetyl L Carnitine, L Tyrosine, and SAMe seemed to give the most noticeable positive results.Reply
Robert Lawsonon June 20, 2015 at 6:38 pm
Also LDN. Huge help.
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Caroleon June 21, 2015 at 1:27 pm
I am wondering -If some supplements work better on men than on women? Or Vice-Versa.
Not talking about hormones. Sam-E worked for me for awhile. ENADA also worked well for brain issues.
Then they changed the mfg and it did not work anymore.
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Prashantion October 2, 2015 at 2:23 pm
Robert,
I am just now reading this blog from June, so I hope you still get this reply.
Thank you or your post. I hope your healing so going well.
Somewhere in the post or a response you mentioned going to a neuro opthamologist. What is that and why?
I have had CFS since 1989 with many years of functioning well. Now I am in a relapse for the last 5 years and my vision is giving me some problems. I am not sure if it’s related.Reply
Deirdre Waterson February 12, 2016 at 1:45 pm
Hi Robert, I just can across this site I am in the u.k. My son who is 15 has CFS he got it Shen he was 11. Can you tell me what is NAC please, any advice would be helpful, thanks Dee
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Prashantion February 13, 2016 at 6:34 pm
Robert, I’m so happy for you. I have tried all those things to be quite helpful. Especially the Sam E. However after a few days it bothers my digestion..big time and I have to stop it. I’ve asked compounding pharmacy if they could make a cream of it, but they didnt think so. Any ideas? Sam E was key for me.
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Caroleon June 21, 2015 at 1:20 pm
Hope you are taking the Methyl B-12 or Hydroxy by injections instead of oral of sub lingual.
The effects are astounding if you do it this way. You really don’t absorb the oral
Carolecompletely.Reply
Gon June 20, 2015 at 11:37 am
I’ve used prednisone, medrol in pulsed doses over long periods with pretty good success, last Dr refused to prescribe steroids at all, so tried celibrex and it worked as well, but as soon as I’d improve, she’d quit the prescription so I don’t know about long term results
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Caroleon June 21, 2015 at 1:47 pm
She quit the Rx as it harms your body big time. You feel so good you do not want to come off of it. Unfortunately most people that have RA and other inflammation don’t want to come off of it.
Celebrex is a Cox 2 inhibitor it is like an NSAID. However it can cause big time bleeding issues anywhere in your body if overused.
I have
taken it and it is the only anti inflammatory I can tolerate. It does help.Just have to stop then start again.
Also Magnesium helps as it relaxes the muscles. Again Inj is better than Oral.
I use a creme made by Our Kids. Order on line. Put on back of legs or arms.
The higher up the more Potent it is on your body. I use just a touch at bedtime.Carole
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Robert Lawsonon June 20, 2015 at 11:53 am
Cort,
Can you please give a reference for Miller’s work.
“Mice studies suggest Celebrex is a microglial inhibitor and dopamine inducer. It’s ability to increase dopamine production is intriguing given Miller’s findings of reduced dopamine/basal ganglia activity in ME/CFS.”
I have had a substantial negative response from physicians when I have tell them that dopamine and dopamine agonists are very helpful for my condition. They take on the psychological aura of a medical NARC protecting me and society from drug abuse.
Following the lead my be helpful for my understanding, but I have come to feel that the relationship between science and practicing physicians is largely coincidental.
Thank you,
RobertReply
Remyon June 20, 2015 at 2:05 pm
I’m curious if it is only Celebrex that is a microglial inhibitor and dopamine inducer or if that applies to all the NSAIDS (meloxicam, ibuprofen, etc)?
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Spikeon June 20, 2015 at 2:21 pm
About a year ago, after reading extensively about CFS & increased cytokine levels, I asked my doctor if he would prescribe a dopamine agonist. He prescribed Mirapex (also known as Pramiprexole). The improvement was immediate.
Quick background: I was felled by this thing in 1987. After decades of experiencing all the symptoms everyone else reports here, along with the incredibly harmful (as in “do no harm”) treatment by countless doctors, I reached a point where I spent perhaps two years doing little aside from sleeping, reading or sitting up in bed playing around on my laptop. I felt emotionally and physically flatlined. This, of course, raises the red flag of depression. But chicken or egg — who the f cares anymore?
I read that CFS raises cytokine levels. I read a study that said repeated cytokine storms deplete dopamine. I read that dopamine is the neurotransmitter that makes one want to get out of bed & live a life (expressed in terms of dopamine being the substance that makes one care about receiving the rewards that come from doing).
I knew I needed some.
I’ve never been able to put a percent on the level of my health. I can say, however, that the dopamine agonist gave me back some of my life. I’m still reclusive as hell, but I’m able to enjoy working in the garden for an hour or so every day. I shower more often (something no one seems to mention: how this disease impacts good grooming habits of a lifetime). In short, I’ve gone from flattened out to feeling alive enough to … well, to write this.
Robert, good luck getting the dopamine agonist prescription. Keep trying. And this evening I’ll post links to some of the studies I mentioned.
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Robert Lawsonon June 20, 2015 at 5:33 pm
Spike, the reclusiveness really hit me too. I am normally gregarious and active. Since feeling better I am starting to call friends to reestablish our relationships.
I have been using amino acids as a dopamine agonist. They do not have the force and speed of methylphenidate, or dextroamphetamine, and are not easy to use, but they seem to have few side effects, and they do work.
Thank you for the info on Pramiprexole. I look forward to the links.Reply
Terryon June 20, 2015 at 5:44 pm
Robert,
Which amino acids work as dopamine agonists?
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Robert Lawsonon June 20, 2015 at 7:30 pm
L-Phenylalanine, L-Tyrosine, L-Methionine for dopamine
I also find Acetyl-L-Carnitine and NAC helpful
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Terryon June 20, 2015 at 8:24 pm
Thanks Robert!
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Caroleon June 22, 2015 at 1:45 pm
Spike- facinating. Wonder what happened in 1987 -the same year I became sick.
Do you mind telling me if you got RX for Mirapex from your PC Dr. or a Specialist?
I am willing to ask anyone if it will help me. However I have the same Heart issue that Greg has and have to make sure it will not speed up my
HR.Great review of your symptoms.
Just had Metho Choline Asthma test last week and had bad reaction to the drugs the gave me to cause reaction and then to bring me back to baseline. Still not over it.
Thanks for the info.
Carole
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Spikeon June 23, 2015 at 1:40 pm
Carole,
I got the Mirapex/Pramiprexole scrip from my psychiatrist. I’ve seen him once every 3 months for the last dozen years for antidepressants, so he knows me & my situation well. That, along with his general good-guy-ness, no doubt convinced him to prescribe it.
Importantly, at least two studies have reported successful use of a dopamine agonist as an adjunct to antidepressants in patients with recalcitrant depression — but I can’t remember whether I showed or discussed those with the shrink prior to his prescribing the agonist.
I will try to find the links for those studies — but first I want to find the studies I mentioned earlier in this string. Two dear old friends came over for 2+ hours Sunday. Delighted to see them, I lit up like a sparkler. I am now ass over teakettle at the bottom of the rabbit-hole, nothing moving but my fingers on the keys, just lying here, mixing metaphors. The small pleasures.
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Betsyon June 23, 2015 at 3:37 pm
Spike, thanks for those last 3 sentences – laughter is the best medicine. I am sorry you’re in that shape but we can’t lose our sense of humor – if that happens, we’re totally lost!
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Caroleon June 20, 2015 at 12:02 pm
I would like to find out what drugs Greg took for the Dilated Cardiomyopathy (DCM).
Also really resent the fact that he says “I knew how to work the system”.
The fact that most of us wait 8 mo to a year to see any of these “BIG” Doctors and he gets in to see Montoya in 2 mo???? This goes beyond arrogance. Then he got an e-mail from Dr. Bateman?PLEASE TELL US HOW YOU WORK THE SYSTEM!!!!!!
I would like to know about the Pridgen Protocol .
Celebrex can reak Havoc with your gut.
Carole
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Betsyon June 20, 2015 at 12:56 pm
Carole, I don’t think Greg was being arrogant, he’d been around the system so knew the ropes and worked it – happens all the time in life. I’m pretty sure any of us would take advantage of any extra knowledge we had. It certainly didn’t help him to get easy access to Montoya later, and the email from Dr. Bateman was after a 6 month wait requesting a skype consult.
I’m scheduled to go to Stanford myself but their narrow focus makes me question the expense given anti- virals can be prescribed by any doctor.
I am wondering if the cardiomyopathy is diagnosed via a scan or simply the fact that a stress test showed a lowered ejection fraction.
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Sarah Lon June 20, 2015 at 1:31 pm
One way to get a sooner appointment is to call to check if there have been cancellations. That is how I saw Dr Cheney long ago on two weeks notice, for my initial visit. My husband called regularly to ask about cancellations,wisely realizing that, at that stage, I did not want to see super specialist, as that was admitting how very ill I was, and not improving.
It is logical, if you think about it. People make appointments six months ahead, coming from far away, then are too sick to travel, or some other life problem blocks them from going on short notice. The time blocked out for that person is abruptly available on short notice. Of course, you have to be able to travel on the sort notice. I was, and it was the kindest thing my husband did for me, as I got useful help from Dr Cheney. No cure, but treatment for symptoms and a new diet that I still follow, and the stern advice that I had to quit work. Wrenching, but I did it.
Maybe the author has other tricks, but that is the one my husband knew, for which I was glad.
Sarah
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Caroleon June 21, 2015 at 1:37 pm
Just had a complete Cardio workup that lasted over a 4-5 week period.
I was too exhausted to do more than one a week.
The Nucler stress test was the most fascinating. From that- Cardio Dr. wanted me to have
MethoCholine test for Asthma. This took 4 hrs. Asthma Dr. said I had the healthiest Lungs she had ever seen. However I had reaction to some of the inhaled drugs they used.
I do have mild Asthma?????Have to go back to see Pulmonary Dr. in 2 weeks.
Carole
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Gregory Cutleron June 20, 2015 at 1:16 pm
Carole,
Send me your email and I’ll send you the information you requested.
Greg
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Gregory Cutleron June 20, 2015 at 1:55 pm
Carole,
First every instance has been different. To begin with I’m a doctor and make a huge point of that (even though I’m a veterinarian) as at least once that’s all it took!
In this instance I found out who was actually in charge of scheduling for the clinics and tried to see/befriend if she could help me to get an appointment. She tried to work the system by seeing if I went through internal med I could get referred. Then I called Dr. Montoya’s office and a really snotty receptionist told me it didn’t matter because I was outside the “Stanford Area Code”. I got her name and called back the head of scheduling and told her of Dr. Montoya’s study involving first a patient from South America. I said it was an outrage that a Hospital that prided itself on treating people from around the would would deny an American Doctor!
An hour later I got a call offering my choice of appointments!Greg
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Caroleon June 21, 2015 at 2:05 pm
Greg- First to let you know, my Dad was a Vet. I am a State licensed
Animal Rescuer and trainer and State licensed reg Dental Hygienist in 2 states.I always go to the head of the departments also. However I have talked to many people that who really need help and I agree they may not know to be pushy. I am. However, your statement came across as I am a Vet and I know how to work the system.
Anyway I am interested in finding out more about the Pridgen Protocal.
Meant to mention also I have been a patient of Cheneys and I found very little help from him. He is the highest fee wise in the US. I saw him off and on for over 12 years.
There is no one in the SE to see other than Miami and they are not taking any new patients.
Went to college in California. Wish I were there now to see some of the good Dr.
Carole
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Beccaon June 23, 2015 at 12:33 am
“Miami” (Nova SE Neuroendocrine Clinic, Dr. Klimas and wonderful crew): Drs. K and R may not be taking new patients, but they are always training new doctors who are very carefully chosen for compatibility with the clinic. The SE is very lucky to have access to these original and new doctors, all with kind attitudes and open perspectives. Do not give up; check them out. Persistence furthers.
Many, many people are having successes reducing inflammation with carefully designed restoration protocols for the gut microbiome. There are many natural approaches to anti-inflammation that do not cost much; it has to be a changed lifestyle because this stuff does not always work overnight. Also, our food supply has been radically altered in the last thirty years, especially with gene-spliced Roundup ready glycophosate foods, and these comprise the majority of all regular supermarket foods; they destroy gut microbiome ecology sooner or later, resulting in chronic inflammation domino effects on the body. IMO and after decades of observation, no one is going to recover or stop decline who stays on this Standard American Diet (SAD).
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Kira Mooreon June 20, 2015 at 12:26 pm
This may be a really dumb question but has Greg been tested for Lyme and coinfections through IGeneX Labs? Most docs (even cfs ones) are not aware that commercial tests give false negatives 50-70% of the time for lyme. The germ from lyme goes into a cyst-state after about 4 weeks and can hide from lab tests and antibiotics. Igenex (and i’ve heard Clongen Labs) has a more sensitive Western Blot test.
Also, anyone already treated for lyme, a 2-4 week course of antibiotics won’t be enough to kill it.
(Anyone opposed to commercial antibiotics can be treated with an herbal protocol with good results – starts with Cat’s Claw – a book outlines the regime, forget the title – on amazon).I think everyone diagnosed with cfs should be tested through IGeneX to rule out Lyme – it is in every US state and around the world.
If anyone is interested in my story:
I had lyme in 1993 – bull’s eye rash and everything. Went immediately on antibiotics but symptoms still arrived weeks later. More antibiotics got rid of it but only for a few months. The last time the symptoms came back the month’s worth of antibiotics didn’t work and i was diagnosed with cfs.
Fast forward to 1999. Still sick as hell, got a positive cdc western blot but, since other tests were negative, i was told it was still cfs.
Worked on health with supplements, herbs, diet, etc. but fatigue, PEM and brain fog never left.
Toward end of 2013 I had a horrible relapse and became virtually bed bound. Read Richard Horowitz’ book, Why Can’t I get better? and got retested in in March of this year with Igenex – boom – Lyme!
I start a heavy course of antibiotics in 2 weeks (wanted to get my body as healthy as possible first). For someone who’s had it as long as i, i’m told it will take about 2 years but i will get well!
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John P Rileyon June 20, 2015 at 1:11 pm
Hey friend,
I have been fighting CFS for a very very long time. I am 80% service connected through the VA. My CFS is said to be chemical exposure related. Yet not one single theropy has been tried on me. The Doctors at the VA are just simply not interested.My question is, how hard is it to get this IGeneX Lab thing?
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Robert Lawsonon June 20, 2015 at 6:30 pm
John,
I suspect that this is a “position” taken by the VA rather than disinterest. You can work the system there. The lab work and tests I got at the VA have been helpful in my research. If you have issues that they can relate to directly you can get help too. I get vestibular therapy at the VA, and will be seeing a neuro-ophthalmologist soon. These issues are a result of ME/CFS, which they cast a blind toward, but they will treat them if they fall into standard categories.Reply
Terryon June 20, 2015 at 7:03 pm
John,
Are you familiar with Dr. Nancy Klimas and her research institute in Florida (at Nova University)? She was also at the VA in Miami a few years ago, seeing patients & doing research on Gulf War Syndrome. Because of that research I would suspect/hope that she is still there. Maybe you could get your PCP at the VA to do a conference call with her at the Miami VA.
I tried to do this a few years ago but had a really bad PCP at that time, and since have found treatment outside the VA. But I know from my experience that the conference call IS something you should be able to do. You might need to be pushy & demanding to get it, but it could be worth it. I think Nancy Klimas is one of the best out there.
Also, if you are able to travel to the Miami VA you could see her there. The tricky part with that is that you first have to have a PCP at the Miami VA to refer you to her. At least that’s what they told me a few years back. Maybe you could push & get your VA PCP to intercede & refer you directly to Dr. Klimas.
Other than that I have to agree that the VA has done nothing for my CFS. I once had the head of the Internal Med dept meet with me, read a list of symptoms that she expected I had (CFS cheat sheet), and then she asked me what I was going to do about it!
Good luck, John.
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Kiraon June 23, 2015 at 6:47 pm
John,
Sorry i couldn’t get back sooner. I have pretty good coverage, so my lab work is covered. But all i had to do was have the doctor who prescribed the bloodwork for Lyme make sure the blood was sent to Igenex.
Also, see if you can get your hands on a copy of the book I mentioned (Horowitz). You will learn tons about chronic illness that is not easily diagnosed.
Good Luck!
Kira
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Greg Gon June 20, 2015 at 10:20 pm
Kira,
Did the CFS symptoms of PEM (and also non-refreshing sleep?) start for you directly after having the bull’s-eye rash from Lyme Disease?
I have the classic CFS symptoms. I’ve wondered about Lyme as I’ve had ample exposure to ticks. But I haven’t had the joint pain that is often associated with it and I’m not aware of other accounts of someone getting PEM directly after a strong Lyme indicator (bull’s-eye rash).
I’ve tested negative with the western blot and haven’t pursued further testing yet but if PEM can be linked to Lyme than that is quite interesting to me.
Thanks,
Greg G.Reply
TERRYon June 21, 2015 at 8:11 am
I’ve had PEM, unrefreshing sleep, etc since mid-1980s. Then I got Rocky Mountain Spotted Fever in 2008 and realized that antibiotics helped everything. Doc suspects I’ve had Lyme for many years. The problem with even good testing is that if you’re in the chronic stage it can be harder for the tests to detect it—disease gets better at hiding itself & immune system is more dysfunctional.
I’m better after a few years of antibiotics & large dose antivirals, but still have fatigue, PEM, unrefreshing sleep. Less fatigued though—no longer have to nap in the car after doctor appointment just to be able to drive home!
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Beccaon June 23, 2015 at 1:09 am
Lyme Disease, like syphilis once was, is called “the great imitator” because its Borrelia spirochete and related pathogens can mimic any diagnosis out there, physical, emotional, mental. LD and many other multifactoral conditions are highly individualized, I guess, depending on one’s epigenetics and degree of environmental toxicity. Mold/mycotoxin illness, Lyme, NEID, MCS — all are mostly ignored by docs whose medical paradigm demands a one-size-fits-all insurance company model. This is beginning to change as the younger doctors cycle into the system. Most docs would like to be free of these restraints to be of better help to their patients. Proactive patients who keep teaching the system how to better behave and those who never give up and refuse to be talked down to by the disease management system get the best results that assist others in the long run.
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Robert Lawsonon June 23, 2015 at 5:22 am
Could not agree with you more about being proactive Becca. I spent eight days in a major hospital and got nowhere. The medical practice establishment are brain dead when it comes to these ailments. Only after analyzing the test results from the hospital stay, and doing a lot of research on my own, was I able to cobble together a treatment plan. I am back to work and reasonably functional now.
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Kiraon June 23, 2015 at 6:55 pm
Greg,
See AlsoImagesFirst, let me make sure i’m translating correctly. PEM i thought was post exertional malaise.
Second, commercial labs are notorious for false negatives on lyme.
Third, get Horowitz’ book.
Last, if you have been anywhere near ticks, get tested through IGenex for Lyme and coinfections asap!
Good luck!
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Debbieon June 21, 2015 at 4:03 pm
Thank you for your story. So many people I have spoken to online over the last 5-6 years are positive I have lyme. I can’t seem to get any of my doctors on board and of course my insurance doesn’t cover the testing through igenix.
I have to try to find a way to get the money needed and a Dr who will help.
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Debbie Iversonon June 20, 2015 at 12:44 pm
Wow, this is definitely something I have experienced and I was beginning to think that my improvement wasn’t as marked as I remembered.
About three years after falling ill, slowly and progressively, I saw a rheumatologist who was willing to treat me for inflammation despite all my markers being normal. She prescribed meloxicam (brand name Mobic) a drug very similar to Celebrex but generic and inexpensive.
After a few weeks, I saw remarkable improvement in my joint pain and stiffness. This meant remarkable improvement in all my symptoms that I thought were related to my joint pain. For the six months I took meloxicam I felt I was recovering. However, I can’t say whether or not it would have continued as I developed an allergy to nsaids and had to stop taking it.
Also, I saw mention of prednisone. I was on prednisone for a week about four years in and felt like my pre-illness self. It was amazing.
I have always felt there was an inflammatory aspect to what had befallen me despite having normal results on tests. It will be interesting to see if studies of the newly discovered lymphatic system in the brain will lead to discovery of new, cerebral-specific inflammation markers. If that’s even a thing. I sound pretty smart until I sound stupid.
Cort, can’t thank you enough for all the information you share. I’m way behind the information curve—been sick since 2005 just diagnosed February 2015.
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Debbie Dionneon June 21, 2015 at 4:08 pm
Thank you for your story. So many people I have spoken to online over the last 5-6 years are positive I have lyme. I can’t seem to get any of my doctors on board and of course my insurance doesn’t cover the testing through igenix.
I have to try to find a way to get the money needed and a Dr who will help
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Caroleon June 22, 2015 at 2:16 pm
Debbie- Have you had any Gut issues with Mobic? I can take Celebrex for a short period as it is not really an NSAID but a Cox 2 inhibitor and works different on the digestive tract.It is an Antinflamatory.
Interesting about the Ketamine as it has been sued by Veterinarians for years
with animals. Many people have also become addicted to it. Hard to get now.
I have had 2 animals that I almost lost when they had it from my Vet for a minor
surgical procedure. Of course then it was by injection.I won’t let them use it on mine anymore. I am sure it works different in oral form in people.
Very interesting.
Carole
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Debbie Iversonon June 22, 2015 at 2:42 pm
Carol, I was surprised to NOT have any gut issues on the meloxicam. Not even the slightest bit of heart burn. That being said, I was only on it for six months until I developed asthma. No telling what the long term effects would have been on my GI, but I do recall the dr saying it was easier on the stomach than Celebrex.
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Debbie Iversonon June 22, 2015 at 2:43 pm
Carol, I was surprised to NOT have any gut issues on the meloxicam. Not even the slightest bit of heart burn. That being said, I was only on it for six months until I developed asthma. I do recall the dr saying it was easier on the stomach than Celebrex.
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Helenon June 20, 2015 at 1:00 pm
I’ve had ME since 1985 with worsening mobility my biggest issue. On days when everything is so uncomfortable that I find it difficult to get going, I take 600mg ibuprofen which apart from helping the pain does provide a degree of wellbeing. That one dose in the morning is generally sufficient to see me through the day. I still have my usual issues with mobility etc but the ibuprofen reduces the burden a little and helps get me through.
I’m careful not to take it every day or for long periods.Reply
Karolinaon June 20, 2015 at 1:16 pm
Hello, I’ve been suffering from CFS/ME since 2012 after fighting for more than a year with glandular fever and herpes Type 1 and an array of enteroviruses. Nothing was helping – NHS only good with pacing advice. Through a very painful road of research and experiments of mine – I recovered to 70% I think. I’ve met a kinesiologist/nutritionist – changed my diet radically, been put on probiotics soil based 29 strains and antiinflammatory serrapeptase the strongest 3xx day
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Betsyon June 20, 2015 at 3:17 pm
Karolina,
I just ran out of probiotics and although don’t think they do a bit of good want to keep taking. Would you let us know what you’re taking?
I’ve recently started Cordyceps from Life Extension – way too early to know if it’s helping but I have been having a string of much better days energy wise. There’s also a form of curcurmin some folks in my yahoo group have said really helps their pain but I can’t remember the name now – I’ll look it up and repost. If anyone takes magnesium, I recently discovered Calm, a powder – it’s great.
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Caroleon June 21, 2015 at 2:46 pm
One of the best is Pro 5 by Pro Health and VSL #3. VSL#3 you can order on Amazon. Also take NOW Lecithin from the NOW Co online. granules.
Carole
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Karolinaon June 20, 2015 at 1:22 pm
And it worked very well taking into account that before all that I was around 30%:) I’m recovering it’s slow but progressive 🙂 Started decreasing the dose of serrapeptase and was doing well but had a jump
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Karolinaon June 20, 2015 at 1:29 pm
In work hours – extra cover from 19 to 26hrs a week for a month and after payback increased the dose again to 3 times a day and survived – now back to my usual routine
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Karolinaon June 20, 2015 at 1:35 pm
Focusing totally on recovery – complementary treatments etc. And after a while managed to decrease the dose. Getting on 🙂
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Sueon June 20, 2015 at 1:51 pm
I have serious sensory overload/overstimulation problems, and it’s difficult for me to take the regular NSAIDs because of G.I. issues. But recently I discovered I can take enteric coated baby aspirin, which I took 3x a day for a lower back strain. I had a marked improvement in my ability to tolerate sensory stimulation, but I had to back off after about 3 weeks to 2x a day due to GI issues. I believe it’s beginning to wear off after just a few weeks. I wish I could take a stronger NSAID but my G.I. system just won’t tolerate it.
I’m wondering if anybody else with sensory issues has found that anti-inflammatories help the their sensory issues as well as pain and well-being. It helped my mood, too.
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Debbie Iversonon June 20, 2015 at 2:03 pm
Sue, any time I’ve had pain relief with NSAIDS, I definitely tolerated sensory stimulation better–especially noise. I had no G.I. problems with meloxicam like I have had with other over-the-counter NSAIDS like naproxen sodium.
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Cathyon June 20, 2015 at 1:53 pm
Maybe try LDN? (Low dose naltrexone)
A friend of a friend tried it for fibro and progressed so much she feels cured! I’m going to try it.Reply
Freshbrewon June 20, 2015 at 2:12 pm
Regarding the lyme igenix comments above: has anyone else witnessed that our viral antibodies can also make a false positive ” lyme” lab IGM ( vs igg) reading even through igenix for those of us with long term m.e./ cfs( 1980s to present exacerbating to come bedrest in 2010). like greg s wife i too had undiagnosed Hashimotos ( autoimmune thyroiditis more common in us with hhv6) then thyroid cancer ( hasimotos related to higher incidence thyroid cancer ) and m.e/ cfs. I am also positive for hhv6. Which came first the chicken or the egg?
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Amyon June 20, 2015 at 2:27 pm
I was dx with CFS in Sept. 2010. In the beginning I would take Motrin for headaches but usually only in the morning. I no longer take Motrin since changing my diet. Taking supplements such as Vitamin D and CoQ10 have helped. Pacing has helped the most and a life style change. Recommend using a nutritionist (Karen Hurd) http://www.karenhurd.com Working with Karen Hurd changed my energy level and my brain fog and headaches. Acceptance of a new life style and realizing that I do not have to prove that CFS exists. Being grateful for the things I can do rather than focusing on what I cannot do. Website and support group http://www.cfsselfhelp.org website is the best. Join and it will change your life too. Best of health to everyone.
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Lisa Petrisonon June 20, 2015 at 4:17 pm
Truckee-Tahoe is sporadically extremely problematic with regard to what a lot of people are calling “Mystery Toxin.”
This story sounds quite classic to me.
http://paradigmchange.me/wp/outdoor-toxins/
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Matton June 20, 2015 at 4:25 pm
Hi. I have had ME since I was 13 32 years ago. A few years ago I tried 75mg of slow release diclofenac and on the first day felt no change. On the second day both pain and fatigue improved but would revert overnight to previous levels so I increased it to 75mg day and night. I felt like I had recovered for quite awhile. It was amazing what I could do. I had been pretty bad before I started taking the diclofenac.
Then like Greg it stopped working just as suddenly as it started. I also seemed to become allergic to it with breathing problems and becoming quite puffed. I just couldn’t believe I was back to being so bad after feeling like I had gotten my life back again. I was devastated by it.
Now I am bed bound and very ill.
I do wonder if the window of wellness set me up for this in that the underlying illness might have still been there and I may have overextended myself with terrible consequences later or may be this is just how it would have been anyway.Reply
Matton June 20, 2015 at 6:53 pm
PS I tried Arcoxia and Meloxicam afterwards and neither of these worked. It’s like whatever pathway worked before to help closed off suddenly. Also when I was good sensitivities and headache also went plus PEM went and I was able to rest and recover for the first time in forever.
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Carole Rushingon June 21, 2015 at 2:28 pm
Matt- If you haven’t already. Please be checked for Asthma and consider seeing a Pulmonary Specialist for a CPAP machine to help you breath better at night.
Some meds can trigger Asthma. This is serious.
A Pulmonary Dr. can ck you for both.
Carole
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Jiki Bertsch-Bettson June 20, 2015 at 7:12 pm
Hello,
Eight years into this illness. I had 90% of the symptoms of ME/CFS and it started out as a 3 week, or so, on and off cycle in 2007, that progressed to over 50% ill. I quit work at 57, four years ago, with no hope of disability payments. Cort’s blog has been a priceless support during these past 8 years. I have not contributed until now, but feel I should pass on the “latest” as I feel “cured” most of the time. Started writing all of the details of the past eight years, and just erased it to get to where I am now.
Narrowed down to the following supplements and NO STRESS. I may add other supplements but these are my must have:
CoQ10 – (Liquid by NOW contains B vitamins and a couple of other supplements).
B Vitamins – especially B6 and B12, but I take a multiple B now.
Vitamin D3 – I live in a Northern Latitude and am a breast cancer and basal cell carcinoma survivor, so I take 10,000 units a day and still only test about 50. I can tell if it is enough by the clearness of my skin of Keratosis pilaris, and by my improved moods.
Ashwagandha 250 to 450 mg – Miracle cure!!! I used to wake up in the middle of the night with severe anxiety. No more! Wish I had know about this 40 years ago…. Absolutely no side effects.
Liver support in the form of licorice liquid supplement or DGL. (West Botanical Medicine ADRENAL SUPPORT contains ashwagandha and licorice, along with some other good supplements, but I use about 1/2 of the recommended dose).
Probiotic – I have tried a variety and currently use Natures’s Bounty Advanced Probiotic 10.
The cure for me?????
DOXYCYCLINE HYLATE 100 MG:I am an otherwise healthy 61 year old woman, not taking any other medications, until earlier this year when I switched doctors. The new doctor prescribed the Lyme disease test as well, and got excited when one of the factors showed as positive. She talked the lab into double checking for a false positive, which it was not. Hopefully I described this accurately as don’t understand the details of that type of testing. I literally laughed at her, as have not had a tick bite in over 40 years. However, I decided to try the antibiotic treatment as I had not taken any for over 15 years. I had been wondering about trying some, just in case there was a bacterial cause of any of my inflammation. My greatest fear, over all of these years, has been the neuroinflammation, brain swelling, or whatever the heck has been going on in my head.
I have been taking Doxycycline Hyclate 100 mg, twice a day, for 5 months. The change has been unbelievable!! I have had just a few relapses, which have been very, very brief and mild. I have some residual malaise, but getting better.
Trying to put together a good night’s sleep is my only issue at this time and extremely frustrating. But, my fearfulness around the brain inflammation and PEM has dissipated. Actually remembering what it feels like to feel happy! Reading about the bottom dropping out for Greg, makes me very sad for him and gives me a wake up call, wondering if this is really IT for me. I don’t have any side effects from the Doxycycline, as long as I take it with food and take a daily probiotic, so I will keep it up for a few more months and keep my fingers crossed.
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Cort Johnsonon June 20, 2015 at 7:19 pm
Wow…Isn’t’ that something Jiki! Congratulations on your success (after so long :)). Doxy after all this time! (Who knew?) :). Does the doctor think a couple more months will do it – and you won’t need to take anymore?
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Jiki Bettson June 21, 2015 at 6:55 pm
Thank you Cort.
Yes, going to take at least another three months or more. I am still thinking ME/CFS and not sure why I am so close minded about a chance that Lyme Disease as the cause of my illness.
The doctor says there is no blood test to determine if the Lyme is “gone.” I did just read a blog by a doctor recommending another type of antibiotic as a Lyme treatment followup “because (Doxy) treatment took aim only at Bb’s spirochete form with no attention paid to the round body form…” (Keith Berndtson, MD).Reply
Cort Johnsonon June 21, 2015 at 7:56 pm
Thanks – good luck over the next couple of months…
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Betsyon June 21, 2015 at 8:11 pm
Jiki, I’ve seen a few articles on David Foster’s ( composer) wife who has Lyme. She was recently in Europe getting a stem cell treatment which made me wonder if that’s ever been tried for CFIDS.
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Caroleon June 21, 2015 at 2:40 pm
Could not do without my Probiotics. I take Pro 5 -2 AM with @ Schiff and the 1 VSL#3 for IBS everyday. These have completely eleviated my Gut issues.
Also Adrenal supplement , Compounded, DHEA low dose Vit A liquid and a great Protein Powder PEAS AND LOVE with veggies and fruits in it. also Coconut water.No red meat for 5 years. Also no sugar. Gluten free.
Works wonders for me.
Carole
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Betsyon June 21, 2015 at 5:16 pm
Thanks for those suggestions Carole – are you vegan? I’m about 97% after learning what goes on in factory farms, but that’s for another blog.;-)
I had a nuclear stress test a couple years ago for chest pain – all well. Found out by accident I’d been diagnosed with cardiomyopathy but that was pre ablation when I had PVC’s. Post ablation test my ejection fraction bounced back to low normal , so I’m assuming I don’t have it, but never really got that straight. Also by accident a very infected congenital lung sequestration was discovered so I had to get a pre surgery lung test. I too had good lungs – she said over 100% for my age. Would be interesting to know measurements of this type for more of the CFIDS population….
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Caroleon June 22, 2015 at 2:35 pm
Jeki-
Great post. I have been tested for Lyme- but years ago.
Hope my PC will test for me or my Environmental Dr.Thanks for the wonderful info.
Carole
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Caroleon June 22, 2015 at 2:48 pm
I agree on the testing. My CPAP /Pul Dr, suggested the Asthma test .
I am on CPAP machine as I had quit breathing 40 times a night and didn’t realize it. Really think the CPAP with a humidifier has saved my life.The Vegan diet is not hard to stay on. Have been Gluten free for about 5 yr. You get plenty of Protein from Beans/Rice and veggies.
As someone who has to have protein I use a wonder Love & Peas
Protein powder mix with ice/coconut water- all berries, Spinach Beets if you want them . Drink these 2 a day. Also plenty of
High PH water Arctic Springs. NO RED MEAT. Millet/Flax bread from
Sami’s bakery in Tampa. It is so good my kids steal it from me.
No Bananas too much Fructose for me. I mix Beans in my drinks sometimes-no one notices it.I do Yoga in bed 2-3 times a day . break it up -improves your
circulation and brain.Used to be a long distance runner than a walker.
The Diet is EVERYTHING!!!!!!! You get plenty to eat.
Carole
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Beccaon June 23, 2015 at 1:19 am
Lyme is now spread by any type of infected insect. Ticks are so small — the size of a tiny pencil dot even — that most people never guess they have been bitten and infected; the results may not show up for months or years. Most people do not get a bullseye rash.
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Prashantion October 2, 2015 at 2:14 pm
Jikki,
I am just now reading this blog from June, so I hope you still get this reply.
How were you tested for Lyme’s?Reply
Katherineon June 20, 2015 at 7:35 pm
I have been on an anti inflammatory diet for three months and I am learning to love it. No nightshade vegetables, no grains other than brown rice or wild rice, no dairy, no soy, no legumes, no sugars except erythritol, no legumes. The book I picked up at the book store is informative and gives easy to follow recipes and four weekly menus. My gut is so happy and I am slowly getting more energy. On good days I can walk 30 mins which is double last years walking. I have had M.E. since 2000 and am 72 years and do take many supplements and a sleeping pill but prefer a natural program to medication. The plan does promise I can try to add foods back in to my diet but I’m not going to hurry. Sometimes I do go off the diet for a meal with friends but hop right back on.
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Caroleon June 22, 2015 at 2:57 pm
One thing I think we all can agree on—
STRESS IS THE KILLER!!!!!!!!
JUST KEEPING THAT IN MIND MAY SAVE US ALL!!!!!
my diet and supplements just save me from the STRESS!!!!!
Carole
Thanks Cort great reviews.
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Nickieon June 20, 2015 at 10:59 pm
I have dealt with CFS/FM for over 20 years (diagnosed for 10). The best I have felt was the time the dermatologist prescribed prednisone (a few weeks relief) and the time I convinced my PA to prescribe minocycline. I gave her the website road back.org to research. I was doing so much better and then she refused to renew it for undisclosed reasons. Those were the best 18 months of the last 20 years.
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Matthiason June 22, 2015 at 3:48 am
minocycline reduces microglial activation so that’s why you felt better….
We need more research on these microglia dampenersReply
CJon June 20, 2015 at 11:01 pm
Hi all,
Per anti-inflammatories, if one does nothing for you try another.
There’s at least 5 different subsets of them as a family. For instance, Aspirin is just a bit different than ibuprofen & naproxen, which are somewhat similar. Indomethecin is again chemically a bit different. Celebrex is the only Cox-2 inhibitor on the U.S. market. Meloxicam/mobic is another unique one.Even for basic musculoskeletal aches/pains/injuries, response can vary dramatically by person and product.
Prednisone & it’s related glucocorticosteroids are anti-inflammatories but they are like using an tank to enter a house when 2 policemen could safely enter when looking at the extensive possible negative side effects on the rest of the body, especially with long-time use.
One more thing — if you have a SULFA allergy, many of the anti-inflammatories have a sulfa component and this gets often overlooked forgotten. Celebrex has sulfa!!! Mobic does not.
Appreciate the comments and ideas I get here….but it’s so hard to keep trying things, waiting to see if they work, weaning off what has to be weaned if it’s not working or causing problems…..CFS/ME is tiring enough without all the treatment complexities! Can’t wait for progress in research & understanding! (my true but somewhat forced optimism…).
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Karolinaon June 20, 2015 at 11:38 pm
Hello Betsy,
The probiotics are called Prescript-Assist 29 strains soil based, quite expensive as well but definitely worth it. Serrapeptase is this silkworm enzyme and it’s antiinflammatory potent without the side effects that conventional antiinflammatory drugs have.
I’m having antiinflammatory diet too, and researching curcumin as well – will have a try:)
Regarding the l-carnitine mixReply
Betsyon June 21, 2015 at 8:36 am
Thanks Karolina. The product some folks in my yahoo group say have significantly eased their pain is Curaphen.
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Karolinaon June 20, 2015 at 11:51 pm
Magnesium, L-cysteine or glutathione, vit B12 and coenzyme q10 – I found improvement after taking magnesium, vit b12 and l-cysteine. Doesn’t need coenzyme q10. Don’t know if you’ve heard of Dr Sarah Myhill she’s a leading CFS/ME specialist in the UK – wrote a book about mitochondrias (mitochondria not hypochondria.. – highly recommended) and carries out tests to define which of the above substances you need. See Dr Sarah Myhills website with extensive info and how to book blood tests – also from abroad.
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tandrscon June 21, 2015 at 2:05 am
I take a bunch of anti-inflammatory herbs and spices. I can safely say that I wouldn’t be functioning at all without them.
Check out Cort’s blog for a list:
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tandrscon June 21, 2015 at 2:37 am
From what I can gather, vagus nerve stimulation can also reduce inflammation. This also helps me – I use the method of a TENS machine on my ears:
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Debbieon June 21, 2015 at 8:54 am
I was on anti-inflammatories for years. At 16 started with ibuprofen, then I believe at 22 med called relaflex (sorry my memory is not great anymore), then I believe it was Vioxx (couldn’t take Celebrex because I’m allergic to sulfa).
Ten years ago I was told I could not take anti-inflammatory drugs anymore. My creatinine levels and eGFR was bad and my digestive tract was shot from my esophagus down to my ulcerative colitis. This includes 2/3rds of my large colon removed at 30 due to colonic enertia. My esophagus has been dilated once due to scar tissue.
So I guess with all that to say, how would someone like me be helped?
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Katherineon June 21, 2015 at 10:14 am
Hi Debbie
You might like to look at a book called Natural Solutions for Digestive Health by Dr Jillian Samo Teta
KatherineReply
Debbie Dionneon June 21, 2015 at 4:17 pm
Thank you.
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Meridaon June 22, 2015 at 11:38 am
Debbie,
You mentioned colonic inertia early on. This may be an important clue to central nervous system issues. I have this too – had complete shutdown for 6 weeks – almost died. Tethered spinal cord is known to cause these issues. Cort has posted an important research article on the short filum terminale in FM patients. I have been dx with this by one of the few neurosurgeon experts in this area.Tension on the spinal cord is aggravated by an unstable pelvis/sacrum. Sometimes there are some structural variations in this complex pelvis/sacrum situation that cause neuro problems.
The story of Lolo Jones and neurosurgeon Robert Bray is worth reading.
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Debbie Dionneon June 22, 2015 at 12:39 pm
Thank you I will have to look into that. I had been on Mylanta since I started kindergarten. The Doctors told my mother I was just a stressed out child. That was partially true. Then as I got older they asked if my parents hit me.
I could never have a regular bowel movement. When they had me swallow the magnet capsule so they could follow it down my colon, they made me wait 3 agonizing weeks before they realized it wasn’t moving at all and I begged them to let me take something to go to the bathroom I was in so much pain.
Thank you for your input.
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Beccaon June 23, 2015 at 1:29 am
Mylanta allegedly has or had a lot of aluminum in it — very toxic for the brain and body and implicated in Alzheimer’s. Your body might still be stuck with it. An integrative doc, carefully chosen, could do several different forms of toxic metals screenings for you and very, very careful chelation, preferably with Pectipure Modified Citrus Pectin, a great detoxifier of many things messing up our immune systems.
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Debbie Dionneon June 23, 2015 at 3:16 am
Thank you for that information. That is something that has been mentioned to me before, I’m trying to think in regards to a specific incident. I used to be known for being the go to person who remembered everything at work policy wise etc. I’m lucky now to get through my days at work without screwing everything up.
I’ll have to write this down and look into it.
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Dianeon June 21, 2015 at 12:47 pm
Hi Cort
Your question about anti-inflammatories made me check out my ‘wonder drug’ and I’ve discovered that it is indeed an anti-inflammatory and I had not realised!
A few years ago I was addicted to milk chocolate. I would eat about 150g per day – because it made me feel better. It removed my headache and gave me more energy. After a few years of this , I had arranged to see my osteopath for testing (applied kinesiology) to see what supplements would best help me. I took along a block of chocolate for him to test. He laughed. That won’t help. He laughed even more when he found that it did indeed help! Of course, it also harmed (dairy and sugar, probably) so he had to find what ingredient in the chocolate was providing relief. It turned out to be phenylalanine.
Since then I have been taking phenylalanine tablets every day. It did not take long for me to feel the effects in energy and mood, but it took a few months before I lost interest in chocolate.
Some months later the osteopath suggested I might be ready to give up the tablets, but I was not sure. I cut them down instead. Within a week I felt worse! I ended up increasing my dose.
I am not cured. However, I am one of those who is able to do a full day’s activity if I need – as long as I am prepared to suffer the consequences for a few days after. I can weed the garden once a week; I can do my own shopping and house cleaning, etc. I go out once a week. Since taking the tablets I am doing a little bit more, but the big thing is that I feel so much better each day. I don’t drag myself around.
This is very interesting to discover that it is an anti-inflammatory. Thank you.
Diane
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Robert Lawsonon June 21, 2015 at 6:09 pm
Diane,
If you want to kick the amino acid effect up a notch have a look at Eric Braverman’s book The Healing Nutrients Within.Reply
Dianeon June 22, 2015 at 6:10 am
Hi Robert
Thank you for this. I looked at it on Amazon and read some of the comments. It looks great. However, I know my capabilities. I could never read through a book of this length. Pity!
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Prashantion October 2, 2015 at 2:12 pm
Diane,
I am just now reading this blog from June, so I hope you still get this reply.
Which form of phenylalanine are you taking? I seem to have read that the DL-Phenylalanine is best, but I can’t recall why. I did try it without much result. What is the dosage you take?Reply
Issieon June 23, 2015 at 12:14 pm
Lyme and coinfections with another protozoa has been one of my issues. Ive been on doxycycoline for 2 years now. Along with an antimalarial herb for the other protozoa. It has really made a huge difference. Im also low fat, wholefood vegan. That has been essential. As some of the others have commented I find lumberkinase to have been of benefit in my protozoa routine. It helps to breakdown the biofilm that virus, bacteria and protozoa are hiding in to avoid detection from the immune system. As for pain and inflammation – for me, turmeric is a must. I tried curcurmin but it caused a herx reaction and didnt help with mood as well. (Yes it can help that too.) I find that having a fresh papaya daily just helps everything. Good enzymes there. Right this minute I’m weaning off most of my meds to see what will happen. Ive been in a bit of a flare. But something still tells me I may not need what all ive been taking and that may be taxing my body even more. Even if something is alternative and natural your body has to process it. Maybe ive healed enough to no longer need as much. We will see. Addressing the protozoa and changing my diet has been key.
Issie
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Prashantion October 2, 2015 at 2:08 pm
Issie,
I am just now reading this blog from June, so I hope you still get this reply.
How did you get tested for the protozoa and the Lyme’s?
You mentioned eating papaya daily. Did you know that papaya seeds have some sort of anitmilarial qualities?
This make me think…..I first got the fatigue after my first trip to India in 1992. Lots of mosquitos then and rarely did people have window screens. We slept under mosquito nets.Reply
Issieon October 2, 2015 at 10:01 pm
Dr. Stephen Fry is the doctor that discovered the protozoa (protomyzoa rehumatica or FL1953) that is spread by not only ticks but mosquito. He did my test for that protozoa. He sent me to Lab Corp to have my Lyme and co infection test done.
Issie
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Patty Carlinon June 26, 2015 at 12:24 am
My diagnosis came after having Epstein Barr which is a precursor to Lymphoma. My 87 yr old Mother has lymphoma, also has Fibro, so I watch my labs closely. My lymphs are always off. I get swollen glands a lot. I’ve always felt inflammation is connected. Now that we know we have a pathway all the way to the brain, I’m hoping that they will find a link. I’m 62 and have had Fibro and cfs for about 20 yrs. not proactive anymore, just too tired. I found all these comments very interesting. Thanks for the post.
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Jillon June 26, 2015 at 5:26 am
Hi Greg and cort,
I too have a similar success story with NSAIDs. I was given a 3 day for a tailbone injury about 3 years ago and find they helped me globally. I took slow release sodium diclofenac 75mg. I had taken voltaren before over the counter doses and it had done nothing but always turned to neurogenic over other pain killers . I’ve had ME getting worse since I was 15 and am now just about 50. Other things to shift the illness gave been surgery for burst appendix, minocycline ( helped the brain) and now the sr voltaren. I hate taking it long term as am worried about long term effects – but on the other hand what option do I have? Do either of you have comments on this and if I need reg blood checks? My gp thankfully will prescribe where the rhemmie would not ( no inflammatory markers was his excuse! Too bad my taxes are paying his salary!).
I also tried a sample pack of Celebrex and found that even better, but we have to pay for that here in nz.
I think that the NSAIDs somehow quell inflammation somewhere that is being undetected. My dr friend who also has ME says a medication doesn’t ‘work’ like this in a space of a few days. We agree to disagree , and I don’t get his logic there. I know what is true for me. And I know its not random remission as he maintains.
One thing I notice it really helps is that terrific tension up the spine and neck that feels like a red hot poker and causes all the neck shoulder muscles to tighten .
Matt who wrote earlier is a good buddy and like you is now screwed and bedbound. Do you think I should pulse dose the voltaren ? What would you do with an animal? When my dog had an arthritis attack and was given metacam, I thought I must try that – and whatcha know it was an NSAID. Had been saying for years I needed to see a vet as they always seemed to work on best guess and response , like gps and antibiotics, but giving out NSAIDs full time seems you’ve got to prove inflammation according to the rule book. Bollocks I say. If the govtbaint gonna out decent dollars into research then they can pay for n=1 trials. So glad you wrote your story Greg . Made me feel like I wasn’t making up my response . Best wishes , JillReply
garrett keenanon April 15, 2019 at 8:12 pm
Cort,
Did you ever write up any comments on your experience with Ketamine? Did you go ahead with the trial?Garret
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Cort Johnsonon April 16, 2019 at 3:42 am
I’ve actually never tried it but I am going to do a write up on the latest ketamine developments soon.
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Michaelon April 18, 2019 at 5:49 am
CFS for 25 years, have tried everything like most of you. Four stories in this thread re: Prednisone causing instant and lasting effects, I can confirm exact same outcome. Of the gazillion dollars I’ve spent, prednisone 5 mgs, $5 worth of pills put me back to pre illness. Tried taking them long term on such a low dose what could it hurt right? One of my wisdom teeth was eaten by the acidity of the prednisone and one filling fell out. Ended up at the dentist for wisdom tooth removal and all fillings replaced. Stopped prednisone, back into hell. Couch bound. Home bound.
There is definitely brain inflammation going on in our disease and it’s causing all of the symptoms.
Try prednisone for a week even at 5 mgs you will remember what living feels like. Lie about if you have to, (maybe sinus infection or rash)? Doctor’s are stupid and useless with regards to this illness. The way they look at you you would almost wish it on them for a day. It’s borderline reckless neglegance.
Also, my C reactive protein (a measure of inflammation in the body) is always elevated. Have yours checked.
Reading the new antiviral plus Celebrex study outcomes, I’ve decided to try L-lysine and Celebrex for a couple of weeks to see what happens. I’ve noticed before that when Lysine was in my supplement regime, I would always feel somewhat better. It’s a natural antiviral as potent as Valtrex. No anti-inflammatory herbs or supplements have made a measurable difference.
Very informative thread! Prednisone cures this disease!…but slowly destroys the body. Brain inflammation caused by viral / bacterial infections seem to be causing an inflammation loop that won’t turn off. Prednisone turns that loop off…patient returns to normal.
So there is a cure, but it will kill you.
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Dariuson March 17, 2020 at 1:24 pm
Tired and exhausted as long as I can remember but had my first severe crash at 23, I`m 29 now.
Tried lots of stuff, only thing that marginaly helped long term was eating organ meat and pacing but I do have a positive response (less brain fog, less pain, better mood etc.) to ibuprofen which I take ocasionaly for headaches.Reply
