My Experience With Dr. Kaufman at the Open Medicine Institute

[jeff_w]

Hi @jeff_w
I've been wanting to reply to this thread and didn't get a chance until now. I am so happy for your recovery progress and you have always given me a lot of hope. Never feel bad or guilty for getting better. Never.

@Gingergrrl - Thanks so much for your reply and for saying this. I actually was feeling guilty, which doesn't help anyone else and was bringing me down a bit.

I've been thinking about why my recovery has been slower and different than yours and wanted to see what you thought of my ideas. (I know you are not a doctor but just curious what you think as a fellow patient since we both had mono/EBV as a main trigger.)

~ My first thought is that you got ill in your early 20's and me in my early 40's and it is just harder to recover from severe mono/EBV when you get it later in life.

I have read in journal articles that people recover more quickly when they're younger. Interestingly, children and adolescents tend to have excellent recovery rates (again, according to research). Another journal article stated that people under age 38 recovered much more quickly than people over age 38 during a leaky gut intervention for CFS/ME. (I'll say more about this intervention in a bit.)

That being said, I've heard stories about people who, even in their 60's, recovered very well. There are so many possibilities.

~ My second thought is that I tried Famvir and you tried Valcyte (and this was by my own choice b/c I was afraid of potential side effects from Valcyte and I did not have other infections like HHV-6 or CMV.) But now I wonder if the Valcyte helped you by the anti-microglial effects in addition to anti-viral which I did not get with Famvir?

This very well might be part of it. I'm now on both Valcyte and Famvir. My improvement was slow and steady on Valcyte alone but wasn't so remarkable until I added the Famvir on December 20th. I'm wondering if the two anti-virals have a synergistic effect. I actually had a reactivation of EBV on Valcyte alone. However, I still felt quite a bit better and was semi-functional during the reactivation--it didn't wipe me out. That might have been due to the anti-microglial and anti-inflammatory effects of Valcyte. Could you add Valcyte to your regimen?

I'm also taking Low Dose Naltrexone (LDN), which is another anti-microglial drug. I skipped the LDN one night, a month ago, to see what would happen. The next day, I ached everywhere, had difficulty moving, a terrible mood, and far less energy than usual. Could you try LDN?

~ My third thought is that you were greatly helped by the IV saline which for whatever reason, my body was not able to tolerate. I had that weird fluid overload reaction with flash pulmonary edema from one liter of saline which could have killed me. I wonder if I could have tolerated the saline better, if it would have helped me long term? I think you also tolerated the methylation supplements (which I did not) and wondering how these made a difference?

I did sense that the saline helped my body adjust to a more normal state and thus heal. The constant, severe orthostatic intolerance seemed like a constant trauma on my nervous system, and the saline helped take care of that. I also had low blood volume, which was another a strain on my body, and the saline eliminated that as well. I was on daily IV saline (1 to 3 liters) for 4 months before I was well enough to stop. Perhaps easing these two problems for 4 months (1. Severe orthostatic intolerance; and 2. Low blood volume) helped my body return to a much more normal state. I wouldn't be at all surprised, as my body was far less traumatized and strained for 4 straight months.

If I remember correctly, you tolerated saline well at a lower drip speed, while the higher speed caused the pulmonary edema? I wonder what would happen if you asked Dr. Kaufman for permission to do a tenth of a liter? Is that low amount capable of causing a pulmonary edema? What if you did one tenth *very* slowly, over the course of an hour, once in the morning and once before bed? Although, I understand that you might not want to go near saline ever again.

Yes, I tolerated methylation supplements just fine, and I seem to get a slight benefit from them.

~ My fourth thought is that you had high titers of EBV by PCR (which I did not have.) So in some ways you still had active mono itself when you saw Dr. K so you were immensely ill in a way that I was not (b/c I was negative on EBV PCR test- but positive on all other EBV tests.) So I think I had a re-activation of EBV which has caused me all kinds of autonomic damage but in some ways you still had the actual mono itself which it sounds like is now cleared.

Perhaps. I'm also taking about 15 supplements, all of them are supported by peer-reviewed academic journal articles. I run each one by Dr. Kaufman first, and send him the research articles, to get his final opinion before starting them. I've had a dramatic improvement from them. Some of them are related to the leaky gut intervention that I talked about above. I should post about these soon. (ALSO: Did the OMI test you for SIBO?)

Please don't try to push it and your recovery is still very new and fragile. You should still be resting every day (which I always feel hypocritical saying to others b/c it is so hard for me to practice myself.)

It is difficult but I'm resting a lot.

It doesn't make me sad b/c I know where you have been and how hard you worked. It has also made me think and wonder if there are things that I can do differently although I know each of our bodies are different and recovery is so unique and individual for each person.

Thanks! And you can PM me to discuss regimens.

You can also use this as an opportunity to help with advocacy and fundraising for OMF and the End ME/CFS Project. I have done a little bit but if I ever become well again (or even a little bit better) I will be using my skills as a social worker to help others (and myself!) with ME/CFS worldwide.

I will advocate. Absolutely. This has been a life-changing experience that robbed me of years of growth and experiences that could have been great. I hate knowing that so many others with CFS/ME are suffering the exact same fate, some even worse.

I look forward to the updates and if you do leave PR, let's please exchange e-mails so I can continue to hear how you are doing or how we can work to help OMF and future ME/CFS research.

Definitely.

 

[Gingergrrl]

@jeff_w

Thanks so much for your reply and for saying this. I actually was feeling guilty, which doesn't help anyone else and was bringing me down a bit.

My life is often consumed by guilt about being sick and it doesn't help me or anyone else. So guilt about getting better is equally unhelpful although if I get better, I am sure I will feel it too.

I have read in journal articles that people recover more quickly when they're younger. Interestingly, children and adolescents tend to have excellent recovery rates (again, according to research). Another journal article stated that people under age 38 recovered much more quickly than people over age 38 during a leaky gut intervention for CFS/ME. (I'll say more about this intervention in a bit.)

I suspect that is true that in general, the younger you get sick, the quicker it may be to recover (and of course there are exceptions to this.) I wonder why someone under 38 would recover better to interventions for leaky gut? I am curious to hear more about this!

That being said, I've heard stories about people who, even in their 60's, recovered very well. There are so many possibilities.

I agree that anything is still within the realm of possibility and age is only one factor.

This very well might be part of it. I'm now on both Valcyte and Famvir.

I didn't realize that you are on Famvir now, too. What is your dosage (if you are comfortable saying- and you can answer by PM if you prefer on anything that I ask!)

My improvement was slow and steady on Valcyte alone but wasn't so remarkable until I added the Famvir on December 20th. I'm wondering if the two anti-virals have a synergistic effect. I actually had a reactivation of EBV on Valcyte alone.

That is interesting and maybe they do have a synergistic effect. The one thing I can say for Famvir is it got rid of what I would call the "sickly fatigue." I used to feel like I still had mono with freezing/hot alternating chills, feverish, severe fatigue and that is gone with the Famvir. But it has not helped my autonomic issues and my ability to breathe while eating or walking or basic activities is still very low.

Could you add Valcyte to your regimen?

I could and this is up to me to decide. I am waiting for all my test results to come back from Quest and then I will be doing a phone consult with Dr. K to figure out the next step. It is just that I have had so many bad reactions to things that Valcyte really scares me.

I'm also taking Low Dose Naltrexone (LDN), which is another anti-microglial drug. I skipped the LDN one night, a month ago, to see what would happen. The next day, I ached everywhere, had difficulty moving, a terrible mood, and far less energy than usual. Could you try LDN?

What dose of LDN are you taking? I tried LDN once (apologies to people who have already heard this story) at a low dose of 1.5 mg but I was not able to tolerate it. It was prescribed by my former naturopath before I ever went to OMI. She told me that was the lowest dosage available which I now know is untrue. It gave me severe insomnia where I did not sleep for one minute the entire night which was intolerable to me b/c I have a sleep regime that works great about 95% of the time so I didn't want to mess with it. I am also hesitant b/c I take painkillers for severe cramps 3-4 days a month and now when I've had severe chest pain (we think micro-vascular spasms) I also take painkiller so I'd be afraid to be in a situation with LDN where I could not take the painkiller even though I do not take it on most days.

I did sense that the saline helped my body adjust to a more normal state and thus heal. The constant, severe orthostatic intolerance seemed like a constant trauma on my nervous system, and the saline helped take care of that. I also had low blood volume, which was another a strain on my body, and the saline eliminated that as well.

I have OI, some form of POTS, low BP and low blood volume as well which I know puts a strain on my body. We also think I was having hypoglycemia episodes although this seems to have gone away as I am eating more food on most days.

I was on daily IV saline (1 to 3 liters) for 4 months before I was well enough to stop.

It amazes me that you could tolerate that much saline and how different we are all.

If I remember correctly, you tolerated saline well at a lower drip speed, while the higher speed caused the pulmonary edema?

Sort of and I will explain. When I was in the hospital, I had one liter of saline at an incredibly slow speed (once a six hour drip and once a ten hour drip) and had no problem with either of these. Then I tried saline at the outpatient infusion center (of the same hospital) with one liter of saline on a three hour drip. The first infusion was great and I felt amazing for two days. I tried again exactly one week later (same amount and speed) but not only got no benefit, I had a bad headache with pressure behind my right eye. I tried one more time another week later (same amount and speed of saline but magnesium added to it) and had the flash pulmonary edema and possible cerebral edema. Literally no doctor can explain why this occurred which is very scary to me.

I wonder what would happen if you asked Dr. Kaufman for permission to do a tenth of a liter? Is that low amount capable of causing a pulmonary edema? What if you did one tenth *very* slowly, over the course of an hour, once in the morning and once before bed? Although, I understand that you might not want to go near saline ever again.

The saline I had was all prescribed by my cardio (not Dr K) although I do not blame him for what happened and no one could have predicted what happened. I am not comfortable trying saline again and scared what could happen if I ever need it in a surgery in the future. If I did try it, I would only do it in the context of a hospital and not at home b/c if I had a horrible reaction, I would need to be near the ER (not the the ER was very helpful when it happened to me.)

Yes, I tolerated methylation supplements just fine, and I seem to get a slight benefit from them.

I suspect that you are one of those people who just tolerate meds well (and I am the polar opposite!)

I'm also taking about 15 supplements, all of them are supported by peer-reviewed academic journal articles. I run each one by Dr. Kaufman first, and send him the research articles, to get his final opinion before starting them. I've had a dramatic improvement from them. Some of them are related to the leaky gut intervention that I talked about above. I should post about these soon. (ALSO: Did the OMI test you for SIBO?)

I take about that many supplements as well (including the two recommended by Dr. K- AHCC mushrooms and Epicor.) The others are from my former ND or things I learned of on PR. I would love to hear what supplements you take (and this can be my PM if you are not comfortable sharing.)

I was tested for SIBO by an integrative GI specialist in LA before I ever went to OMI and was negative. It was the full SIBO test that lasted for several hours and I felt the results were accurate. I had lots of GI issues that my former ND helped me with along with the GI doctor and I still take two probiotics, a digestive enzyme, and did some other treatments and a special diet. I am also taking Zantac 2x/day now to help my stomach and this can also help with EBV (per another protocol I am learning about from Dr. Goldstein's books.)

I will advocate. Absolutely. This has been a life-changing experience that robbed me of years of growth and experiences that could have been great. I hate knowing that so many others with CFS/ME are suffering the exact same fate, some even worse.

I understand and if some day I can advocate in a way that improves the lives of other PWC's I will feel that this has all been worth it whereas right now I am just very bitter about losing the last few years of my life and my career for an illness that most of the world has no interest in funding or treating.

 

[Sushi]

I am also hesitant b/c I take painkillers

Are they opiate pain killers? I think they would be OK with LDN if they are not.

Sushi

 

[Folk]

@jeff_w Can you tell what blood tests he asked for? (if you havn't already...)

Dr. Kauffman doesn't go for lyme does he?

 

[Gingergrrl]

Are they opiate pain killers? I think they would be OK with LDN if they are not.

Sushi

@Sushi the painkiller I was referring to is Norco (an opiate) and I only take 1/2 pill and sometimes only 1/4 pill b/c I am very sensitive to meds. But there are times that I have such excruciating cramps that I take a whole pill and nothing else helps that level of pain.

So I don't think LDN could work for me aside from the fact it gave me complete insomnia which was unbearable. But I don't want to derail this thread off topic!

 

[Sushi]

@Sushi the painkiller I was referring to is Norco (an opiate) and I only take 1/2 pill and sometimes only 1/4 pill b/c I am very sensitive to meds. But there are times that I have such excruciating cramps that I take a whole pill and nothing else helps that level of pain.

So I don't think LDN could work for me aside from the fact it gave me complete insomnia which was unbearable. But I don't want to derail this thread off topic!

You would just have to skip the LDN on the days you took Norco. It just prevents it from working. I know you had a bad experience with LDN but some day you might want to consider trying it in a microdose--like .25 mgs or less. You could also take it in the morning instead of at night. Just a possibility to keep "in your pocket" for the future.

Okay, back to topic!

Sushi

 

[jeff_w]

So I don't think LDN could work for me aside from the fact it gave me complete insomnia which was unbearable.

@Gingergrrl - I started out taking a micro dose of LDN. I took 0.25mg, as @Sushi mentioned too. After a week, I went up to 0.50. Once I hit 1.5mg, I was able to jump to 3.0. After a week of 3.0, went straight to 4.5. You could start out taking 0.25mg in the morning, then switch to night once your body is used to it. Then you could build up more slowly than I did. LDN can make a major difference for some people.

 

[jeff_w]

@jeff_w Can you tell what blood tests he asked for? (if you havn't already...)

Dr. Kauffman doesn't go for lyme does he?

I will find and post those. He's not a Lyme specialist but has one in his office.

 

[Gingergrrl]

@Gingergrrl - I started out taking a micro dose of LDN. I took 0.25mg, as @Sushi mentioned too. After a week, I went up to 0.50. Once I hit 1.5mg, I was able to jump to 3.0. After a week of 3.0, went straight to 4.5. You could start out taking 0.25mg in the morning, then switch to night once your body is used to it. Then you could build up more slowly than I did. LDN can make a major difference for some people.

@jeff_w Did you have to keep getting the compounding pharmacy to make new versions for you or did you divide up the doses yourself? Did you have insomnia from it or were you able to sleep with it from the outset? LDN caused me the worst insomnia I have ever experienced and I was awake for 24 hours straight and felt agitated so I am very hesitant to try it again.

I know it can also push people into hyperthyroid who have Hashimoto's (which I do) so I'd have to do weekly thyroid blood tests which would be difficult for me. I don't rule out LDN but it is not at the top of my list of things to try again. What positive things did you notice from it?

 

[Sushi]

LDN can make a major difference for some people.

@Gingergrrl
I was very interested yesterday to see a short video of researcher Dr. Jarred Younger (used to be at Stanford--so Dr. Kaufman may know him), now he is moving to UAB) talking about LDN being a powerful microglial inhibitor. This may be one of the reasons it helps us.

Sushi

 

[jeff_w]

@jeff_w Did you have to keep getting the compounding pharmacy to make new versions for you or did you divide up the doses yourself? Did you have insomnia from it or were you able to sleep with it from the outset? LDN caused me the worst insomnia I have ever experienced and I was awake for 24 hours straight and felt agitated so I am very hesitant to try it again.

You started out taking 1.5mg, which is 6 times the amount I started with (0.25mg). Who knows if you'll have side effects on 0.25mg.

I got mine from a compounding pharmacy. The smallest dose they had was 0.5mg, so I opened the capsules and split them into 0.25mg doses. You could split the capsules and start even lower than that. I only had insomnia the first time I tried raising it directly to 2.0mg after a week of taking 0.25mg. Too much of a jump.

I know it can also push people into hyperthyroid who have Hashimoto's (which I do) so I'd have to do weekly thyroid blood tests which would be difficult for me. I don't rule out LDN but it is not at the top of my list of things to try again. What positive things did you notice from it?

LDN makes me have zero body aches, a much better mood, better cognition, and more energy. I would trade the benefit I get from LDN for weekly blood tests, but we're all different.

 

[Sushi]

I got mine from a compounding pharmacy. The smallest dose they had was 0.5mg, so I opened the capsules and split them into 0.25mg doses.

You can also get it in liquid from some compounding pharmacies and just measure the dose with an oral syringe. This is what I did for years--now I dissolve a 50 mg tablet in 50 mls of distilled water.

Sushi

 

[jeff_w]

You can also get it in liquid from some compounding pharmacies and just measure the dose with an oral syringe. This is what I did for years--now I dissolve a 50 mg tablet in 50 mls of distilled water.

I get the 50mg tablets and dissolve them in water as well. Once I hit 4.0mg, I did it this way. Much cheaper than a compounding pharmacy.

 

[jeff_w]

I didn't realize that you are on Famvir now, too. What is your dosage (if you are comfortable saying- and you can answer by PM if you prefer on anything that I ask!)

I'm taking 1,500mg per day. We're going to bump it up to 2,000mg once insurance approves this.

I used to feel like I still had mono with freezing/hot alternating chills, feverish, severe fatigue and that is gone with the Famvir. But it has not helped my autonomic issues and my ability to breathe while eating or walking or basic activities is still very low.

Your issues seem to be mainly cardiac/autonomic at this point. (I'm not a doctor.) If you fixed that issue, I wonder how well you'd feel and how able you'd be.

I suspect that you are one of those people who just tolerate meds well (and I am the polar opposite!)

It took me a few days to become okay with Famvir. I had nausea and headaches at first. But yeah, for a person with CFS/ME, I tolerate meds well.

I would love to hear what supplements you take (and this can be my PM if you are not comfortable sharing.)

I want to share this and will do a post on it soon, in this thread and in another forum, too.

I was tested for SIBO by an integrative GI specialist in LA before I ever went to OMI and was negative.

Dr. K. said that most of us will test positive for SIBO. Nice that you didn't have it. I was tested for SIBO at OMI last time and was highly positive. Fixing this has made a difference.

I understand and if some day I can advocate in a way that improves the lives of other PWC's I will feel that this has all been worth it.

Yes. I will make sure to raise awareness and funds. This disease is so awful and so misunderstood and ignored.

I think if I fully recover, this experience will have been worth it for a few reasons. I'll never take my health for granted. Every moment will feel awesome, especially at first. I had a glimpse of this feeling two days ago. I was walking up a grassy hill at a slight incline with a friend. The sun was shining on us, and we were joking and laughing. For the first time in years, I felt health coursing through my veins. Layers of fog and sadness were gone, too. That feeling didn't last beyond a few hours, but it was amazing while it was there.

 

[Gingergrrl]

@jeff_w

I'm taking 1,500mg per day. We're going to bump it up to 2,000mg once insurance approves this.

I also take 1500 mg per day but not sure what the new plan will be until I do the phone consult.

Your issues seem to be mainly cardiac/autonomic at this point. (I'm not a doctor.) If you fixed that issue, I wonder how well you'd feel and how able you'd be.

I definitely feel that the core of my issues are cardiac and autonomic but I also cannot create any energy on demand and am very weak. If I do the slightest movement beyond sitting in a chair or wheelchair, I do not produce enough oxygen to breathe. It is worse when I eat and sometimes eating is just not worth it knowing how much harder it will be to breathe afterward.

My fatigue is not sleepiness or tiredness as much as it is the inability of my muscles to produce the energy to function. So I can't walk more than a few feet, can't lift or carry anything, can't pick something off the ground or lift anything above my head, etc. I just joined a dysautonomia forum and waiting to be approved by the admin so I can read the posts over there. I know many people on here have tachycardia, low BP, low blood volume, muscle weakness, etc, but it seems like people can breathe better than me without getting chest pain and microvascular spasms (or whatever they really are.)

But I also have noise intolerance and it is so difficult to be in a restaurant and filter out the music from the different conversations from the conversation at my own table. Something is not right with my brain anymore b/c I can literally only focus on one thing at a time without complete overload and exhaustion but I wouldn't describe it as "fog" or memory loss and seems different than what I read on PR. I also still get nausea, muscle pain, bruises, and other weird symptoms but they are not as bad as the autonomic issues.

But yeah, for a person with CFS/ME, I tolerate meds well.

I have never tolerated meds well and even worse now.

I want to share this and will do a post on it soon, in this thread and in another forum, too.

That would be great and I would love to hear what supplements you ended up with.

Dr. K. said that most of us will test positive for SIBO. Nice that you didn't have it. I was tested for SIBO at OMI last time and was highly positive. Fixing this has made a difference.

I still believe I have some kind of gut/digestive issue even though I tested negative for SIBO. I think I have leaky gut (maybe not SIBO per se) and would love to hear what you did to fix this and did a lot of GI treatments over the summer before going to OMI that were very helpful for me.

I was walking up a grassy hill at a slight incline with a friend. The sun was shining on us, and we were joking and laughing. For the first time in years, I felt health coursing through my veins. Layers of fog and sadness were gone, too. That feeling didn't last beyond a few hours, but it was amazing while it was there.

Wow, that sounds so amazing and I can only dream about what that must feel like. I haven't walked outside without the wheelchair in a long time except to go to the garage and get into the car when my husband is driving me a doctor appt or an important event that then takes me days to recover from. I really can't imagine walking up a hill ever again b/c I don't have the physical strength or breathing ability to sustain it, but I still dream of the day.

 

[jeff_w]

@Gingergrrl - Everything you wrote is so familiar and sounds like me a few months ago. I didn't have bruising, but everything else is eerily similar, even the chest pain, which, combined with breathing problems and paralysis, landed me in the emergency room twice. I'm going to share my experiences and what helped.

I definitely feel that the core of my issues are cardiac and autonomic but I also cannot create any energy on demand and am very weak. If I do the slightest movement beyond sitting in a chair or wheelchair, I do not produce enough oxygen to breathe. It is worse when I eat and sometimes eating is just not worth it knowing how much harder it will be to breathe afterward.

This is remarkably similar to how I was at first, except my breathing problem wasn't quite as bad as yours (but was still a major problem). The weakness and inability to create energy on demand were profound. Saline, antivirals, LDN, supplements, and time seem to be what took this away.

My fatigue is not sleepiness or tiredness as much as it is the inability of my muscles to produce the energy to function. So I can't walk more than a few feet, can't lift or carry anything, can't pick something off the ground or lift anything above my head, etc. I know many people on here have tachycardia, low BP, low blood volume, muscle weakness, etc, but it seems like people can breathe better than me without getting chest pain and microvascular spasms (or whatever they really are.)

I had a sleepy fatigue on top of everything but was otherwise exactly like you at first. Breathing problems from speaking and eating, not being able to pick things up off the ground, and the chest pain. The saline, combined with OI meds, took all of that away. The saline was the major player, because even with OI meds, I still had major problems if I didn't do the saline.

But I also have noise intolerance and it is so difficult to be in a restaurant and filter out the music from the different conversations from the conversation at my own table. Something is not right with my brain anymore b/c I can literally only focus on one thing at a time without complete overload and exhaustion but I wouldn't describe it as "fog" or memory loss and seems different than what I read on PR. I also still get nausea, muscle pain, bruises, and other weird symptoms but they are not as bad as the autonomic issues.

This is so similar to my experience. I had to wear earplugs for the first few months because of noise intolerance. Had a problem with light intolerance, too. The narrow focus problem was also there, as well as being exhausted as a result of focusing and thinking. It would be so great to know what took this away in my case and whether or not it would do the same for you.

Wow, that sounds so amazing and I can only dream about what that must feel like. I haven't walked outside without the wheelchair in a long time except to go to the garage and get into the car when my husband is driving me a doctor appt or an important event that then takes me days to recover from. I really can't imagine walking up a hill ever again b/c I don't have the physical strength or breathing ability to sustain it, but I still dream of the day.

(It was a very small hill )

I was just as bad as this. I couldn't even make it to the car on my own, I had to be pushed in the wheelchair or use a walker just to get to the car. Like in your case, doctors appointments also took me days to recover from.

It seems you and I have the same form of illness in many ways. The severity, the EBV, thinking problems, noise sensitivity, chest pain, breathing problems, no tolerance for activity, etc. Mine went away partially from saline, Valcyte and LDN, as well as all the supplements. Famvir then made another big improvement.

We're all so different, but maybe you are just healing more slowly than I am, and you will be walking up a hill in the sunshine a year from now. Dr K. said I was progressing quickly and that my pace isn't normal at all. He was very surprised. So maybe you're healing completely normally. I wonder what Dr. K would say if you asked him?

Really wish I had some answers.

 

[Gingergrrl]

Everything you wrote is so familiar and sounds like me a few months ago. I didn't have bruising, but everything else is eerily similar, even the chest pain, which, combined with breathing problems and paralysis, landed me in the emergency room twice. I'm going to share my experiences and what helped.

@jeff_w I think the reason I am so fascinated by your progress is b/c our history and symptoms were so similar and we see the same doctor except that you have made a miraculous recovery and I have not. And please know I am not saying this to make you feel bad or guilty in any way. You are 20 years younger than me (I think?) and have your whole life ahead of you and I feel genuine happiness and hope at your story. So I am trying to figure out if there is anything that I can do differently to improve my own recovery. I can't change the age difference but maybe can change some of the other factors.

Did you ever have the bruising? When I had active mono in 2012, I had bruises all over my body and now almost three years later, I still have unexplained bruises on my legs that no doctor can explain. My cardio just re-tested my platelet count, PT, PTT, and INR and all are normal. The bruises appear spontaneously and on average now I have 3-4 at any given time but at the most I had 17 and they looked hideous. Was this ever a part of your mono or EBV?

Also, what did you mean that you had paralysis b/c I have never had that. Could you literally not move? Did you feel that your breathing was paralyzed or your muscles? Just want to understand.

This is remarkably similar to how I was at first, except my breathing problem wasn't quite as bad as yours (but was still a major problem). The weakness and inability to create energy on demand were profound. Saline, antivirals, LDN, supplements, and time seem to be what took this away.

Of the four things you mentioned:

1) Saline was a disaster for me and both my doctors do not think I should do it again b/c not safe for me.

2) I'm taking an anti-viral (Famvir) for almost six months but my EBV and VZV titers are unchanged and ironically the VZV IgM actually went up! Did your actual viral titers go down? Did your NK functioning improve? My tests are not all back from Quest yet so I do not know yet if my NK functioning has changed. I guess my next step is Valcyte and that is one of the main differences between your treatment and mine.

3) My only attempt with LDN was a failure as we discussed but I will bring this up with Dr. K and will re-consider as long as I start really low and it does not give me insomnia, does not push me into hyper-thyroid, and I can still take painkillers on the days that I need them.

4) I take a million supplements but want to compare them to what you took when you have a chance.

I had a sleepy fatigue on top of everything but was otherwise exactly like you at first. Breathing problems from speaking and eating, not being able to pick things up off the ground, and the chest pain. The saline, combined with OI meds, took all of that away. The saline was the major player, because even with OI meds, I still had major problems if I didn't do the saline.

I had the sleepy fatigue and the sickly fatigue for a long time. I literally could not stay awake and felt feverish, hot/freezing chills and just very, very sick. This had gone away with Famvir or with time (I don't know which) but nothing else has improved and has actually worsened. I know from talking to you earlier that you also benefited from Florinef which was another med that I was not able to tolerate and tried it for three mos. I have benefitted from low dose Atenolol and Midodrine though (so we are different in that way.)

This is so similar to my experience. I had to wear earplugs for the first few months because of noise intolerance. Had a problem with light intolerance, too. The narrow focus problem was also there, as well as being exhausted as a result of focusing and thinking. It would be so great to know what took this away in my case and whether or not it would do the same for you.

For me the worst sensory problem is noise intolerance especially when there are two competing sounds or noises. If there is just one, I am okay. I can watch a TV show or talk on the phone if everything else is silent but can't do two things at once. Another thing that I can't tolerate are things that move like a flashing light or spinning circle. The footer on the bottom of CNN and other news channels is so distracting for my brain that I can't follow the verbal news while it is there and we have to cover the bottom of the TV with a pillow to block it out. That tells me that something is wrong with my brain b/c I used to be able to multi-task a million things at once in my former career.

(It was a very small hill )

It doesn't matter and you still did it and don't have to minimize your recovery. I am genuinely happy for you and I hope to learn from your recovery.

I was just as bad as this. I couldn't even make it to the car on my own, I had to be pushed in the wheelchair or use a walker just to get to the car. Like in your case, doctors appointments also took me days to recover from.

I can make it to the car on my own and truly wouldn't even have the strength to push a walker! Once we get to wherever we are going (unless it is only a few feet) then I use the wheelchair.

It seems you and I have the same form of illness in many ways. The severity, the EBV, thinking problems, noise sensitivity, chest pain, breathing problems, no tolerance for activity, etc. Mine went away partially from saline, Valcyte and LDN, as well as all the supplements. Famvir then made another big improvement.

I am feeling that if Famvir was going to help me, it would have already done so. I am also becoming less scared of trying Valcyte but if I do, I have a LOT of questions that I will be asking you guys. Also, I am prepared for insurance to deny it and to go through a lengthy appeals process or financial assistance application program.

We're all so different, but maybe you are just healing more slowly than I am, and you will be walking up a hill in the sunshine a year from now. Dr K. said I was progressing quickly and that my pace isn't normal at all. He was very surprised. So maybe you're healing completely normally. I wonder what Dr. K would say if you asked him?

I have never asked him how my recovery (or lack of) compares to others but I do agree that yours has been very fast!

Really wish I had some answers.

Your answers have been very helpful and I really appreciate it.

ETA: I just checked my BP and it is 87/59 which usually correlates with when I am feeling this bad. Jeff, do you get this low BP, too?

 

[jeff_w]

@Gingergrrl - I have a lot to say and will reply to this post tomorrow.

- Jeff

 

[xena]

Perhaps. I'm also taking about 15 supplements, all of them are supported by peer-reviewed academic journal articles. ...Some of them are related to the leaky gut intervention that I talked about above. (ALSO: Did the OMI test you for SIBO?)

@jeff_w i'd love to hear about the supplements you're taking,, especially the gut related ones.

Are they possibly the 'glutamine, zince.. carnitine, coenzyme Q10, and lipoic acid; and curcumin' mentioned in Michael Maes' paper "Normalization of leaky gut in chronic fatigue syndrome (CFS) is accompanied by a clinical improvement"?

side note: i'm a new patient of Dr. Kaufman's going for a first follow up tomorrow. this thread makes me rather optimistic!

 

[Gingergrrl]

@Gingergrrl - I have a lot to say and will reply to this post tomorrow.

- Jeff

Jeff, no rush or pressure to answer, now or ever and please take your time.

@xena Best wishes for your appt tomorrow! I would love to hear your story some time (whatever you are comfortable posting of course!)