The Next Step For Us

My improvement seems to be continuing, even at altitude. I had an episode six days ago that was probably a sugar reaction, not common for me anymore. I was sick for a couple of hours followed by a kind of sleep I call “coma”. Other than that, I have been remarkably stable. The travel didn’t cost me much at all. I went out for dinner with my husband last night and realized it was the first night out I’ve had in years where I just had fun without struggling at all, after working most of the day. No faking being all right or overlooking symptoms in order to appreciate the moment.

Ali has been struggling with MCS (multiple chemical sensitivity), as a new symptom cluster. She’s had little bits of it before, but nothing like this. It was triggered by an exposure to a new cat litter about a month ago. Since then other chemicals have been triggering her, especially deodorants, perfumes, laundry products. The episodes aren’t medically scary, but involve a dramatic mood shift to blacker than black, ill-defined intolerable, sick feeling. No POTS symptoms particularly, or anything else really. The odd thing to me is that otherwise, she is doing well. Not much OI (orthostatic intolerance). Baseline mood pretty good. With avoidance of the things triggering her, she actually feels fairly well and would be thinking of getting out of the house, but for now, any outings are particularly threatening and would need to be outdoors. We are dealing with eliminating the things she needs us to from the environment.

MCS is a horribly isolating symptom. It makes a hug dangerous. It affects everyone in a household in a more direct way than other symptoms. It comes with tons of psychic overlay. Easy to disbelieve. Looks psychiatric to the uninitiated. Very, very difficult to be a canary in the coal mine.

We recently ran a bunch of labs that were not particularly illuminating, other than our Vitamin D levels are still very low despite replacement. We both still have macrocytosis from AZT, but less than before, expecting it to take 6 months overall to get back to a baseline, because that’s how long it takes to replace all of your red blood cells. Neither of us have serology suggestive of activated EBV, HHV6 or CMV. I have completely negative serology for EBV, strangely given all my years in the ER. We both had high IGF-1’s at baseline, normal now. Ali’s PCOS parameters have improved on treatment (lower LH/FSH ratio), as has my blood sugar on Actos (fasting glucose from 110 to 93, non-fasting from 140 to 110). IgG subunits were normal, my IgG and IgM borderline low. C4a’s and TGF beta-1’s were lost, again; we need to have them redrawn. We’ve been planning to send cytokine and NK cell profiles, but we don’t have baselines, so I doubt that it will tell us much we don’t know.

Our baseline labs consisted of extensive hormone testing and Richie Shoemaker’s panel, which includes all of the very few tests we’ve had that were abnormal in the past, outside of TBD (tick borne disease) testing, and a few fleeting auto-antibodies; I’ve had a mildly elevated nucleolar ANA and we’ve both had mildly elevated anti-cardiolipins. TGF beta-1 was the only test we found that was very high for both of us. When I first learned of the virus, I expected that there would be a viral load measure, but it seems all we have to monitor is downstream effects.

I’ve been receiving questions about my meds. Except for stopping AZT a couple of months ago, nothing has changed significantly since I last reported. I’ve fiddled with my hormones a little. Tried natural menopause for a little while, but it wasn’t pretty, convincing me that bioidentical HRT (hormone replacement therapy) is very important for me. Here’s my current regimen, once daily unless otherwise specified:
Viread 300mg 
Isentress 400mg twice
Cozaar 100mg
Actos 15 mg twice
Deplin 7.5mg
B12 5000 units chewable
Armour thyroid 30mg for years, now 15mg
Estradiol cream 5mg
Testosterone cream 2mg
Prometrium 200mg
Selegilene .5mg cream
Low dose aspirin
Sublingual Zofran 4mg prn nausea
Topical D3 10,000 units, now increasing and adding oral
Meriva SR, undenatured whey protein, L carnitine, glutamine, ALA, Vitamin C, CoQ-10, irregularly
Specific Carbohydrate Diet yogurt, super-fermented to reduce lactose, included here because I think it is a valuable treatment in the setting of inflammatory bowel problems: Making SCD Yogurt

We are both planning to step it up again with supplements, including some we haven’t tried before. It’s a big subject. I will post about this soon.

In consultation with our family doctor, Ali and I are about to start weekly intravenous pushes consisting of a modified Meyers’ cocktail and glutathione. Here is the formula we are planning to use:
Vitamin B complex – 100
Dexpanthenol 250mg
Hydroxocobalamin 5000mcg
Pyridoxine HCL 100mg
Leucovorin (folinic acid) 10mg
Vitamin C 500mg
Magnesium Chloride 800mg
Second Push
Glutathione 2000mg

We have also decided to rent a mild hyperbaric chamber (aka soft chamber, altitude sickness or Gamow bag) and supplement with an oxygen concentrator via mask. This safe technology delivers up to 90% FiO2 (fraction inspired oxygen) at 1.3 ATA (atmospheres of pressure), by non-rebreather mask, with a 10 L/min oxygen concentrator. I’ve been meaning to write a post about oxygen for some time. Because of the observation that CFS patients have redox problems (elevated free radicals), some practitioners think that the use of even low dose oxygen, which produces free radicals during administration, is toxic in this setting. I even heard from a patient that they had been afraid to take oxygen when they were in the ER for chest pain. This seems to be completely incorrect thinking to me. Regardless of the downstream difficulties, oxygen is essential and you have to feed the stream, especially in the face of tissue hypoxia and vascular instability, a hallmark of the disease, causing local ischemia. There are too many anecdotal reports of benefit from low flow oxygen, without added pressure, during downswings, to ignore. It is a very simple, safe thing to try. Supplemental oxygen has helped me through some bad moments. I saw too many benefits from HBOT (hyperbaric oxygen therapy) in practice with related chronic conditions, including autism and chronic Lyme Disease, to dismiss it now.

Administering oxygen is one of the most powerful supportive interventions that we have. Repeated doses of hyperoxia has a salutary effect on the injured brain, whether the injury is ischemic, demyelinating or traumatic. Used therapeutically, repeated exposure to oxygen under pressure is antiinflammatory and antimicrobial. HBOT produces revascularization of ischemic tissues and may encourage mitochondrial biogenesis. Oxygen is regulated like a drug, the argument being that if the dose is high enough, it can kill you, although so can too much water. High dose oxygen can cause CNS hyperexcitability (seizures) in susceptible people. HBOT is “approved” for 13 indications that are treated in hospitals. Approved means reimburseable. Hospital hyperbaricists can be pretty territorial, but using it beyond the approved conditions is legal off-label use of a drug, like using antiretrovirals approved for HIV to treat a different retrovirus, and like the majority of prescriptions written. HBOT probably has broad applicability and nobody wants to pay for it. The technology isn’t patentable, so it hasn’t been studied and optimal dosing for various applications is largely unknown. 

The following papers provide important clues for ME/CFS. The last link will take you to slides of Dr. Rossignol’s lecture for the Autism One conference, this coming week.

Dr. Rossignol’s work seems to me to be hitting on all cylinders. He is beginning to explain why clinically there is an independent pressure effect, since the pO2 (partial pressure of oxygen) for the treatment he is using (FiO2 24% 1.3 ATA) can be reproduced with normobaric oxygen delivered by mask. He is also working on the methylation block question, and his work is suggesting that rather than, or in addition to, a conversion defect, it is yet another (in a long list) of receptor insensitivities, eg insulin, LH, Vitamin D and leptin, overrepresented in ME/CFS patients. This is beginning to get to the heart of the methylation defect. It should be remembered, that methylation is important for retroviral latency.

There are two related neuroimmune diseases with which we already have significant HBOT experience:
   Autism. I personally had wonderful experiences treating autism with low pressure HBOT. Autistic children have many of the same metabolic problems that ME/CFS patients do, including the mitochondrial defect. They have similar brain vulnerabilities as well. I treated children who demonstrated remarkable cognitive gains and improved sensory processing over a very short period of time.
   MS. In the UK there is a network of charity chambers, salvaged military chambers that aren’t rated to go to the depth required to treat wounds or acute carbon monoxide poisoning. At the time I closed my chamber, they had done more than a million treatments over a couple of decades. Their experience is completely uncontrolled. But it’s not that much fun, and people don’t keep doing it for years and years if they aren’t pretty sure it’s helping. There were a couple of studies that indicated benefit, but a negative Cochrane report shut down serious study. Also there’s a medical society, called the UHMS, controlled by the insurers, that exists to be sure nobody gets HBOT for anything but a short list of reimburseable conditions. They also want to make sure that nobody gets treated in anything but a hard chamber, declaring on their website that HBOT requires 1.4 ATA when soft chambers are only rated to go to 1.3 ATA. Rather transparent I would say.

Here is a potpourri of literature that in my opinion collectively support the use of HBOT as part of a coherent treatment strategy for ME/CFS:

We know that changing the environment, internally, externally, in this way or that, has made the difference for some people. We also know that there are many people who stay relatively well, at least well enough to function, doing nothing at all, except living their lives within the limits of their disease. I speak to many patients who have had essentially no medical care for years who describe what for ME/CFS is a pretty good course, stable with periods of very mild symptoms only. That makes it unwise to choose a therapy that might do significant harm. Or at least, save the heroics for the sickest patients. It is ironic that using extra oxygen is more questionable than prescribing dangerous drugs for symptom relief. There was a time when prescribing B12 shots was tantamount to quackery, but how many ME/CFS patients have been helped by B12 shots? Lots. When I was in practice, I was struck by how controversial it was to prescribe oxygen for an autistic child, but SSRI’s, tricyclics, benzodiazepines, speed, whatever pharmaceutical was acceptable. I was also struck by how much some patients improved just by stopping medications. When things are going south, always consider what you can stop. I can’t know of course if this next leg of the journey will help us or not, but I’m pretty sure that it won’t hurt, except in the pocketbook. I’ll keep you posted.

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15 thoughts on “The Next Step For Us

  1. >I am currently on oxygen therapy with an oxygen concentrator. I have seen much improvement in PEM and headache. I actually went out from 9-4 today!! I also do a lot of other things as well but feel this is definetly helping.

  2. >I'll have to come back and re-read this on a day I'm not feeling so brain-compromised. I am so encouraged to read of your sustained improvements!!!
    Please let Ali know I feel for her in the MCS. While I've always been sensitive (since early childhood) to allergens and chemicals, it wasn't until I was doing IVIG a couple years back that MCS really kicked up to significantly life-altering scenarios. They have only continued to progress, leaving me unable to attend our church for the past year, and unlike Ali's, mine are becoming of serious medical concern including a recent ambulance ride to the hospital when I entered a room with balloons (latex allergy). I totally feel for her in the whole shampoo, deodorant, etc. areas and know what you mean about even a hug becoming dangerous! I ventured out of our house 3 times last week and had significant reactions 2 of the three times, one almost landing me back at the ER again. :( Yes, this is one of the most isolating symptoms I have experienced to date!

  3. >Hello Jamie,
    I am very interested in learning about HBOT as a treatment for ME/CFS. Thanks for posting the literature.
    I have had mild to moderate ME/CFS for 5 years now. I live in Montreal (QC), Canada and not only have I not been able to find an ME/CFS specialist but I haven't even been able to locate someone who could point me in the right direction. My GP at least believes I have the illness and helps out with disability forms, but that's all.
    So I am very grateful for your informative and compelling blog. I see how you and Ali have been struggling and wish you both lots of courage and strength. We will get through this, all of us.
    Thanks for sharing.

  4. >I think you are on the right track with your methylation procedure. i see that Dr. Rossignol has listed HIV meds as a cause of MtD.

    I have been on Rich Van Konyenburgs simplified methylation procedure for just over 2 months and have noticed big improvements. I see this a s a treatment that can be very helpful to many.

    I am going to look into HBOT next

    John Stefl

  5. >I know someone with CFS who has a soft hyperbaric chamber, and says it's what enables him to work. He uses it 2-3 times a week. I've been interested in trying it, but I have cataracts, changing very slowly and not affecting my vision much. I've read that oxygen, and HBOT, can exacerbate cataracts and I wonder if you know anything about this.

    John (CFS 28 yrs)

  6. >HBOT may accelerate the maturation of existing cataracts, though the reports come from high dose conventional treatments. It does not cause cataracts de novo. Does your friend supplement with oxygen or is he using pressure only?


  7. >I'd heard of HBOT before, but didn't read up on it until reading about it here. (I figure that if you're taking it seriously, it isn't flaky.) Sounds promising, but you weren't kidding about hurting the pocketbook. $1,800 for 90 minutes? Yikes.

    If any insurance on the planet covers this, I'll be shocked. Any chance the price will come down over time with advances in knowledge?

  8. >I am probably preaching to the choir here, but I wanted to remind everyone of the Chase Community giving on Facebook right now. The WPI is in running with the chance to receive up to $500,000, but right now is in 7th place. Although I'm sure these other organizations are worthwhile, none of them has the capacity to change the lives of so many sick, suffering, and disabled people as the WPI. Voting ends Wednesday. Please urge your friends, family members, acquaintances to vote. Worldwide, we ought to be able to do better than 4,000 votes. An arts education group in PA has 8,000. Here is the link…

  9. >Is there a home model that anyone has had good experience with and would recommend? I guess even after buying a home machine, one would have to get a physician to prescribe the oxygen. I doubt insurance would pay for that either.

    No comments about the conference? A lot of folks are kinda down because of the lack of good news.

  10. >Sorry to hear of Ali's recent struggles with MCS. That is a very challenging one. It is the symptom which keeps me the most socially isolated. It's so challenging when you can't controll your environment. Even more difficult for others to really understand what fragrance free means. My only way to cope if I go out in the "unknown" is Vicks and having an escape route. I sometimes need to move 6 times during one of my daughter's softball games just depending on which direction the wind is blowing. Off course I already have in earplugs and sunglasses( in Portland). At least I maybe give people something fun to gossip about:) If I didn't laugh I would cry. Thanks for keeping us updated!

  11. >Hi Everybody,

    I'm posting this on every CFS blog I read. It is a declaration and a call for action!

    Most of us probably know that both the WPI Institute and the CFIDS association are in the running to win hundreds of thousands of dollars in grant money from Chase Community Giving. We know this, and we're voting, right? Because we're an incredibly strong, vital internet community? But…only about 5,000 people have voted. We are getting beaten by a drum corps! Am I really supposed to believe that more people out there care about a drum corps than about doing research that could potentially save our lives? I can't believe it! We have to do something.

    Because this issue is so important, I swallowed my pride (I usually think mass Cause Emails are annoying) and emailed all my friends asking them to vote for WPI, and although they love me, only like 3 voted. So here's my idea and suggestion: I'm going to email or facebook message each of my friends individually, and not care how annoying I am, and ask them again to vote. I could probably get over 100 votes that way, depending on how many of my friends are flakes. I'm not talking about just my good friends, I mean even just random Facebook acquaintances, too. It's annoying, but my friends will forgive me, and who cares what my acquaintances think?

    Anyway, like the nature of voting itself, one person doing it alone doesn't make much of a dent, but if a lot of us do it, even if just a few of us harass everyone we electronically know, we could get hundreds, maybe thousands of votes. Let's do it, and encourage all our sick Internet-addicted friends to do it, and even our healthy friends. Lets get organized, people! I'm going to post this on my blog and every blog I read, and them I'm going to spend the rest of the day harassing people, and its going to be awesome. Please join me!

    STEP-BY-STEP Instructions:

    1. From your Facebook page, go to Chase Community Giving:

    2. "Like" Chase Community Giving by clicking on the "Like" button.

    3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease and the CFIDS Association.

    4. Cast your vote by clicking the "Vote Now!" button.



  12. >Regarding the use of drugs like benzos in the treatment of CFS and related illnesses.

    There is a good deal of study about the use of benzos to counteract the effects of the cyanobacteria toxins such as domoic acid, which are biotoxins that have effects on the hippocampus.

    For instance:

    Debonnel G, Weiss M, de Montigny C. Neurotoxic effect of domoic acid: mediation by kainate receptor electrophysiological studies in the rat. Can Dis Wkly Rep. 1990 Sep;16 Suppl 1E:59-68.

    Benzos have frequently been used by animal rescuers trying to save sea otters on the coast of California from the seizures that this toxin causes, for instance.

    Insofar as people with CFS are particularly affected by such toxins, benzos conceivably may be an especially appropriate treatment, therefore.

    Paul Cheney has been suggesting benzos as protective of the brain in CFS for more than a decade. I don't think he knows what the benzos are protecting the brain from, but the theory of using benzos to protect it is quite grounded in the literature.

    Conceivably his observations about the oxygen — which also are consistent with how biotoxins work — are accurate too. If Oxygen + Toxic Mold = Damage (which indeed is true), then subtracting the oxygen can prevent such damage from occurring when a person is in a bad environment. The downside of having a relatively anaerobic systemic environment certainly is not negligible, but it may be better than the damage that otherwise would be sustained as a result of the toxin/oxygen combination.

    I took 1.5 mg of Klonopin (a decent sized dose) every night for 8 years while unknowingly living in my bad house. I got much better sleep and felt less out of it. On a couple of occasions, I experimented with stopping — just to see — and got big withdrawal symptoms.

    Shortly after moving to a really good place, I again experimented with stopping at the rate the didn't give me symptoms. I tapered off within a week and never needed them again.

    This is consistent with Cheney's view that benzos do not cause dependence in CFS, and that they are just protective.

    I've heard of lots of other mold avoiders who've had the same experience with benzos. Just this week, in Yucca Valley and Death Valley (both very good places in California), I collected two more such stories. I didn't suggest to either person that they try it — they figured it out on their own.

    Insofar as people are in a bad environment, it may be that oxygen is a bad thing for them. I certainly wouldn't discard the idea just because oxygen is good for normal folks and because the lack of it has a downside.

    As with everything else with CFS patients, different rules apply and biotoxin avoidance can change everything.


    Lisa Petrison, Ph.D.

    lisapetrison at yahoo

  13. >I have added a modified Marshall Protocol to my antiviral med and noticed a distinct improvement. Only one week into it but I am very hopeful.

  14. >Lisa,

    Withdrawing suddenly from Klonopin is a very dangerous and foolish thing to do. Encouraging others to do it is truly shocking to me. Benzodiazepines are physically addictive. Abrupt withdrawal can cause seizures. Please be careful. You don't want to have to live knowing that someone suffered permanent brain injury or died in a tent in the desert, because they did what you suggested. Benzodiazepines need to be weaned carefully after long term use.


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