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Help me solve this riddle: the medications that kept me symptom-free for a full week

Hi everyone,

It's the first time i actually add a blog post to Phoenix Rising, and thought this would be the ideal format to pose a question to the group, and see if anyone can help me solve a very specific riddle: the only time I was fully symptom-free during my many years dealing with this awful condition.

For those that don't know me, I have been dealing with CFS for 16 years, and it has been increasingly getting worse over the years. I was formally diagnosed with moderate ME/CFS by a specialist in 2013. I have also tested positive for Lyme disease three times, clearly and without a doubt, by standard WB and most recently by Igenex test (which also came out as strongly CDC-positive for Lyme). Also strong positive for Bartonella, cPN, and EBV titres off the charts.

I have been bed-ridden before, but for the most part I have enjoyed a level of mobility.

Despite the crushing fatigue, my most relentless and frustrating symptoms are neuro-cognitive (brain-fog, lethargy, severe memory problems, lack of concentration). Those have worsened over time, leaving me with a non-functioning memory and the attention span of a fruit fly. It has affected my life prospects, career and dreams in which I never imagined. I was working full time and applying to start a second post-graduate program after I completed my masters degree when this thing hit me hard. I was never able to resume that academic path. Let me say that my photographic memory was extremely sharp and precise before I fell ill. That gift took me from growing up in poverty to postgraduate degrees in major universities.

I no longer have that gift. I'm a complete scatterbrained mess now.

In my many years dealing with this awful condition, I have had good day and bad days, periods of time when I was better, and times when I was bed-ridden. There were three brief and fleeting occasions in which I felt almost normal... but one of those three times in these long 16 years was clearly and unequivocally distinct. For one wonderful week I was normal. I was symptom free. I had zero brainfog. I was myself again. This is how it happened:

In 2011 I was hospitalized for a major operation, completely unrelated to ME/CFS or Lyme (orthopedic and quite severe). I was in agony, and doctors had to intervene right away. It was a very invasive operation, and it required me to stay at that NY hospital for about 10 days. Can't even begin to describe how painful the whole ordeal was.

Well, something amazing happened during my hospitalization: around the third day at the hospital, the neuro-cognitive problems and crushing fatigue started to dissipate. By the fourth day my mind was clear and sharp, like it was before I fell ill. I had not experienced anything this intense in about 12 years... and keep in mind I was in a hospital bed, in unbelievable pain, recovering from a very invasive operation, and on a lot of painkillers to calm it down. Still, my mind was sharp, my memory back, my wits at my disposal. How could that be?

Those days at the hospital I tried to read as much as I could, I watched old favorite movies that I knew by heart in the iPad... I could recite "Star Wars" again, as I was watching it to the astonishment of the relatives and friends that visited me at the hospital. For about a week, I really felt like somehow, miraculously, I had been cured.

That joy didn't last, though. I was released from the hospital to recover at home, and within a couple of days all the symptoms came back. That brief moment of joy was gone, and I was back in the deep dark hole.

For the longest time I obsessed about what could have been the factor that made a difference. Was it the lack of mobility? Was it the pristine, oxygen-rich hospital environment, or any of the drugs that they administered me while I stayed there? Believe me, I mulled over this for a long time, and tried all sorts of tests.

I couldn't be the lack of mobility or the oxygen-rich environment: I have been hospitalized twice since 2011 for similar periods of time, but without such miraculous benefit in my ME/CFS-Lyme symptoms.

Recently I decided to request a full report from that hospital listing all the medications and treatments that were administered to me during that operation and recovery. It was a very thick tome of photocopied papers containing very detailed info, but patiently I parsed every drug, every dosage and frequency to find any patterns or anything unique.

Many of the medications they gave me at the hospital I had taken before and after my stay (painkillers, Lyrica, amoxicillin). They could not be the cause of the sudden remission since they never had a similar effect on me, neither before nor after.

They also gave me over-the-counter digestive pills to help with the side effects of the painkillers (docusate, pepto, etc). Those couldn't be either, since I take them regularly, and never had such effect before.

After parsing all the data, I noticed there were two very strong medications that I had never taken before (or after that operation, for that matter). I have the feeling that one of these two medications, or a combination of both may have been the cause of that brief period of relief:
  • Vancomycin 1000mg IV (the first three days)
  • Dexamethasone (Decadron) 50 ml IV (every day during my stay, alongside Prednisone 10mg)
So here's the riddle:
  • Was it the very strong antibiotic Vancomycin that knocked out whatever bugs are eating away my nervous system, possibly in combination with the amoxicillin?
  • Was it the very strong anti-inflammatory Decadron that calmed down a severe inflammatory process ongoing in my nervous system, possibly in combination with the steroid Prednisone?
  • Could it be the combination of anti-inflammatory and antibiotics that had that quick and noticeable improvement in my condition?
I'm yet to discuss these findings with my doctors, which I won't see until January, but I'm curious to know what folks in these forums may think about this case. Interested to know if anyone else had a similar reaction to these medications, or if this could be a major clue to help in finding a more effective treatment. I also hope this info may help others in my condition.

Your expertise, ideas, suggestions, and theories are welcome. Looking forward to read your comments and hopefully get closer to a solution. Thank you!

PS: paging @Valentijn @Sushi @Jonathan Edwards @duncan - I'm sure you have wise and interesting theories on this case.
Likes: taniaaust1

Comments

or maybe the situation was even more complicated with it being a combo of things which individually may not do a lot but together could. I'd think the bed rest would of played a part in that too possibly allowing whatever else it was to help.
 
@Taniaaust1, I favor the idea that it was a combination of things, very likely the interaction of those two very potent meds. No doubt that rest helps, but rest alone has not brought me relief in all these years. I've been hospitalized with severe cPN twice since 2011, and didn't get the same effect at all. And it was the same hospital!
 
@seunderwood, I doubt the OTC digestive pills had anything to do with that. I have taken docusate and pepto often, before and after that operation, and to this day they have never had any effect on my neuro-cognitive issues.
 
I dont think you managed to page them, Antares in NYC - perhaps you can´t do that in a blog.

I don´t know anything about Dexamethasone, but is it possible that Vancomycin had an effect on your gut, rather than on Lyme, etc? Have you found that things like diet, probiotics, etc, have had a significant impact on your symptoms?
 
Anatares, I don't believe that it was the vancomycin. Take a look at this paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC163589/. Vancomycin couldn't wipe out any viable borrelia (lyme) spirochetes from the mouse brain if administered more than 3 days after infection. You have a long-standing one. If vancomycin couldn't wipe out spirochetes which is the easiest morphological form to kill, it is unlikely that it would be able to kill even the long-last l-forms or cysts in the brain. It could however have different inhibitory effects for l-forms vs spirochetes but it is unlikely.

I find the dexamethasone to be a much likelier alternative. Cortisteroids are known to quickly deplete b and t cells in the body thus accounting for their anti-inflammatory effect. This combined with the results form the rituximab study in which a depletion of b-cells resulted in complete remission implies to me that the dexamethasone is what caused the ablation of symptoms in you.

Could you possibly try to get cortisteroids (i.e.prednisone) prescribed at a higher dose at 60 mg and then a one month taper. Immunologists often use this test to determine if a problem is mediated by autoimmune factors. If it works for you, it would be a huge step forward and it is highly likely that something like IVIG could result in remission for you.

A couple of questions for you:

1). You said that you had started to feel better after the 3rd day of admission. From which day did they start the vancomycin and the dexamethasone and prednisone? Same days or different days?

2). What treatment have you gotten for lyme? Have you tried long-term antibiotics (I presume you have because of your unequivocal tests)?

3). Have you tried an anti-viral for the ebv? Look at the most recent trials of montoya at Stanford and Lerner?
 
hi @antares.
what sort of pain killers where you on,,,was it aspirin based?
A trial of Dexamethasone (Decadron) 50 ml IV (every day during my stay, alongside Prednisone 10mg) should be easy to replicate.
 
Hi @gregh286. The painkillers they gave me were not aspirin-based. Before and after the operation they gave me high doses of percocet with tylenol, and the day of the operation I received morphine as well.
Do you think that aspirin-based painkillers would have made a difference?

.
 
Hi @Lalab: thanks for you very thoughtful post. I have talked to a doctor that mentioned Vancomycin would have had very little effect on Lyme, if that’s what’s driving my severe neuro-cognitive issues. That said, the Vancomycin could have helped with an unknown gut infection. I have lots of IBS issues, so maybe there’s a different angle to this story. Nevertheless, the anti-inflammatories may be a better candidate for the relapse.

I have taken Prednisone before and after that operation, without any major improvement on my neuro symptoms. I was prescribed that medication in relation to the surgery I mentioned in my post. Dexamethasone is something that was never prescribed to me before, and may have had the effect that you described. For the record, my blood tests show elevated cytokines (never the same ones, but definitely a tendency to be elevated), and random spikes of B cells (CD19, CD20), some of them quite worrisome, but those spikes always come down to still elevated, but not “terrifying” levels. My immune system seems to be “out of whack”, with extremely low NK cells and function, very elevated B cells, and two ig subclasses very low as well.

It may be interesting to ask any of my doctors for a trial of strong corticosteroids just to try. Not sure if they would feel comfortable with this, but it’s worth a try. It would go a long way to prove the auto-immune angle, which is something that happens to many Lyme patients over time, since the spirochete does a fair amount of damage to the lymph system.

I’ve been told I would be a potential candidate for IVIG, but my insurance would likely deny it unless we can 100% prove brain inflammation by way of a spinal tap. With ME/CFS, you never know if unequivocal signs of brain inflammation would show up, so I’m not too confident this would work out.

.
 
@Lalab,

To answer your questions:

1. I was admitted the very same day of the operation, and they administered Vancomycin on that day and the day after. They administered amoxicillin, dexamethasone and prednisone every day, from admission to release from hospital.
2. I have tried long term oral antibiotics for Lyme, but not longer than 8 months. Last month I started IV antibiotics but I’m yet to feel any difference.
3. Since 2013 I have been on antivirals on a daily basis, but they had not much of an improvement on my neuro issues. We tried valcyte, but the side effects were awful. I take famvir since I tolerate it better.


..
 
@Antares, a couple more questions.

1). What dosage have you taken the prednisone before and after the hospital stay.

2). How did you get diagnosed with lyme (western blot, ELISA)? As in what lab did you use (was it Igenex) and was it CDC positive?

3). On what basis are you trying the antivirals? Did you have elevated titres of any pathogen (EBV, HHV 6, etc)?

4). Have you looked at enteroviruses, especially, CBV?

5). Could you post a full list of all the immune related tests you've done? Do you have a CD4/CD8 ratio result?
 
Hi @Lalab,

Here are some answers to your questions:

1. I have taken prednisone (as methylprednisolone 10mg) a few times before and after that 2011 operation, prescribed in one-week packages (where you take 5 tablets the first day, 4 the second, etc).

2. I was diagnosed with Lyme first in 1998 by standard Western Blot, then in 2005 I had another WB positive for Lyme, and then in 2014 I had the Igenex test, which was strong IgM positive and was also strong CDC positive. All test were requested by different doctors at different locations. Elisas were always negative.

3. I have very elevated viral titres for EBV, HHV6, and a number of bacterial infectious agents like cPN and regular pneumonia. My titres for EBV are off the charts, extremely high at times.

4. We did a test for enteroviruses (coxsackie and others) that came out negative, but I'm aware that Dr. Chia recommends a tissue sample instead. We have not conducted an endoscopy for that purpose.

5. I don't think I have a CD4/CD8 ratio test, but I have tons of immune-related tests that I could share with you. They include very low count and function for NK cells, two Igg subclasses depleted, and spikes in CD19 and CD20 that come and go.

I could take a look later at my tests and send you an email with the latest numbers for your reference. Thanks.


.
 
Hi Antares,
Have you had a blood transfusion while in hospital ?
Your case make me think about Dr Bell's hypothesis on Low Blood Volume in ME/CFS.
 
Just wondering if it could be from blood loss during surgery, releasing excess Iron stored in the liver.
 
Hi, I just thought I would mention that I had open heart surgery in June 2015 after being ill with an ME like illness.
I was in the op theatre for over 5 hours so must of had a large dose of general anesthetic. Anyway all my symptoms had gone when I came round from the anesthetic - only to return on day 5 after the op.
 
Hi M1ntie: have you thought of asking the hospital for a full list of medications/treatments that you received while having open heart surgery? Not sure about the UK, but here in the US you can always request a report for such a thing. It's normal and a patient right. I really wonder if there's some crossover medication in both our lists. At the very least it would be interesting to compare notes. I find it really interesting that you too experienced a remission while undergoing surgery.
 
Quick update: I discussed with one of my doctors doing a test run of Decadron for just one week, to see if it was what made a difference in my remission.

Well, I just finished that week trial of Decadron, and I have to say that it wasn't it. I did experience an increase in energy and a sudden interest in social activities, but only for the first couple of days. No remission or improvement of the neuro-cognitive problems, no remission or improvement of memory issues, and the overall level of fatigue remained about the same, with the exception of the initial surge of energy.

It makes me sad that this wasn't the solution, but at least we gave it a shot. I wonder if other elements were at play, like it could have been a combination of medications, not just a single one. I don't know.

Oh well. We'll keep pursuing the key to that remission.
 
Did they use Ketamine for general anesthetic. Ketamine as a NMDA antagonist has the effect to reverse Cfs/Me symptoms for a few days.
 
Hi @Enough_is_Enough: no they didn't use that for general anesthetic. They used Midazolam and Hydromorphone for the anesthesia, only during the first 24 hours of my hospital stay.
 

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