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Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Valcyte reduced the impact of the viruses. However, if you look into Dr. Prusty's papers, you'll find infections can negatively impact mitochondria. Working on oxidative and nitrosative stress and repairing my mitochondria has been effective for PEM.
 

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jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
@Svetlana82

I had many improvements from my 10 months on Valcyte. When I started my blood pressure had dropped to 80/50 and my pulse had slowed to 50. I couldn't stand up without getting very dizzy and I was afraid to drive. I was taking a blood pressure increaser at the time and that helped a little, but I still wore compression stockings to help my circulation. As I took the Valcyte I monitored my BP and slowly weaned myself off of the medication. It has been over eleven years since I stopped the Valcyte and my pulse and BP are normal to this point.

I was suffering from terrible headaches on a continuous basis when I started. After two weeks I noticed that the headaches weren't as bad and as I went on things just kept getting better. I still have mild headaches, but the severe headaches haven't returned.

Other changes occurred that weren't as significant, but were interesting. I was having stool that was almost black when I started. When I finished, things were back to a normal brown and have stayed there since. I ran into Dr. Chia at a conference and asked him about this, wondering if this could be enterovirus related, but he said it wasn't. He had no answer for this.

I have always had problems with my teeth and needed cleanings every three months. After Valcyte, the situation has improved a little, I still get cleanings every four months, but the situation isn't as bad as it was.

My sleep is somewhat improved as the headaches aren't waking me up as much as before.

I can stand up quickly without fear of passing out, and I can drive my car much more confidently. Since Valcyte I have driven on several all day trips.

What I haven't noticed was much of an increase in my energy levels. I need a nap every day about noon, and I need to pace myself when walking or working. The return to normal BP and pulse has helped somewhat, but I am still far from normal.

Hope this helps.

John
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Svetlana82

I had many improvements from my 10 months on Valcyte. When I started my blood pressure had dropped to 80/50 and my pulse had slowed to 50. I couldn't stand up without getting very dizzy and I was afraid to drive. I was taking a blood pressure increaser at the time and that helped a little, but I still wore compression stockings to help my circulation. As I took the Valcyte I monitored my BP and slowly weaned myself off of the medication. It has been over eleven years since I stopped the Valcyte and my pulse and BP are normal to this point.

I was suffering from terrible headaches on a continuous basis when I started. After two weeks I noticed that the headaches weren't as bad and as I went on things just kept getting better. I still have mild headaches, but the severe headaches haven't returned.

Other changes occurred that weren't as significant, but were interesting. I was having stool that was almost black when I started. When I finished, things were back to a normal brown and have stayed there since. I ran into Dr. Chia at a conference and asked him about this, wondering if this could be enterovirus related, but he said it wasn't. He had no answer for this.

I have always had problems with my teeth and needed cleanings every three months. After Valcyte, the situation has improved a little, I still get cleanings every four months, but the situation isn't as bad as it was.

My sleep is somewhat improved as the headaches aren't waking me up as much as before.

I can stand up quickly without fear of passing out, and I can drive my car much more confidently. Since Valcyte I have driven on several all day trips.

What I haven't noticed was much of an increase in my energy levels. I need a nap every day about noon, and I need to pace myself when walking or working. The return to normal BP and pulse has helped somewhat, but I am still far from normal.

Hope this helps.

John
Have you looked into repairing your mitochondria?
 

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jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
@Learner1

My ME/CFS started with a cold back in January 1991. Since that time, I have read and studied every piece of information that I could find. Every time a new idea came along, I was trying it. I have tried almost all of the supplements in the above mentioned report at one time or other.

Of the things that I have tried, Valcyte, LDN and Equilibrant have made a noticeable difference to my health, Valcyte being the most effective, LDN making a small but noticeable difference and the Equilibrant is the one that I continue to take. I never got any where near the recommended dose of LDN, so I may restart that some day and work my way up. I found that I was able to handle only tiny amounts every other day to start and spent months working my way up to around 1/4 to 1/2 mg per day. I had to buy this drug from foreign sources and am skeptical of the purity or contents of what I got. My doctor won't prescribe it for me.

I have a large collection of supplements that I once took, but a while back I stopped taking them and didn't notice any difference in the way I felt, so I stopped. I have tried many different diets and haven't noticed any difference there either.

My latest thinking is that I should try working on a solution for my head, the constant headache, the ringing in my ears, and the poor sleep. This seemed like a minor irritation compared to what else was wrong, but I am beginning to believe that the source of all problems lies in our brains. Researchers have looked for viruses for years and have not found conclusive proof of any viral connection to our illness. I have been tested by Dr. Chia and ARUP for enteroviruses and Mayo Clinic for the herpes viruses and yes I am filled with them. The question that remains is whether these viruses are causing the ME/CFS. I would love to see a medication for enteroviruses come along, I have been waiting for more than 10 years for that to happen, but there doesn't seem to be a priority with the drug companies. The Equilibrant I am taking does help, but I am able to take only half of the recommended dose, three tablets a day. If I stop, my headache definitely gets worse.

I saw an advertisement for a cure for tinnitus that promised to reduce the swelling that leads to the problem. I was considering purchasing some, but $ 60.00 a bottle seems a bit steep for a few herbs. Lets say I have become pretty skeptical after years of trying things. If it would help, I wouldn't hesitate, but I have to believe there is a reason for the swelling and I want to know the cause. I was holding out hope that Dr. Ron Davis and his group would come up with something quickly, but the optimism that they had seems to have faded as they have gotten deeper into the problem. Perhaps a brain tissue sample will be useful, but I am not ready for an autopsy yet.

I am as anxious as anyone for a cure and I am confident that there is an answer out there, but I am pretty certain that I won't be the one to find it. I pray that we all get an answer soon.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
You might want to familiarize yourself with Bhupresh Prusty's recent papers. The gist is that HHV6 (or, he says, other herpes family viruses) don't have to be fully active, but rather can be sitting there, smoldering along, and causing mitochondria to fragment and cause energy problems.

https://www.healthrising.org/blog/2020/04/26/explaining-chronic-fatigue-syndrome-naviaux-prusty/

I think I lucked out, in having my specialist prescribe Valcyte for 20 months, 12 months at 4 pills a day, then another 8 at 2 pills a day, until I had 4 successive negative EBV PCR tests. Then, my naturopathic doctor helped me improve my mitochondria, using the strategies described in the attached.

I found that one can use some excellent interventions, but if the groundwork isn't in the proper order, it's ineffective. (Think about doing physical therapy before setting a broken leg...) Supplements, used with proper testing and in a way customized to your situation, can indeed help the symptoms you describe.

It sounds that you gave a complex situation that's not going to be solved by a magic pill. Long term infections are a drain on your body's resources and can impact your immune system function, your endocrine system, and your overall biochemistry.

Beyond Dr. Davis, you might look to the metabolomics findings in ME/CFS and compare your findings to them, and look for answers there, as well as determining if the viruses are still causing you issues or not.
 

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sometexan84

Senior Member
Messages
1,229
@Learner1
Do you have any recommendations or additional info on specific oral supplements for Membrane Lipid Replacement?

Any thoughts on D-Ribose, regarding potential negative side effects? I've stumbled on D-Ribose warnings a few times, so I've steered clear.

https://selfhacked.com/blog/d-ribose-health-benefits/
By inducing protein aggregation and rapidly producing AGEs (advanced glycation end products), D-ribose may be involved in cell dysfunction and cognitive impairments [31, 32].

Long-term oral administration of D-Ribose induces memory loss with anxiety-like behavior and also elevates Aβ-like deposition and Tau hyperphosphorylation associated with Alzheimer’s [33].
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Do you have any recommendations or additional info on specific oral supplements for Membrane Lipid Replacement?
I use NT Factor, formulated by Garth Nicolson and licensed to Allergy Research, Nutricology, and Researched Nutritionals. Generally, the tub of powder by Nutricology is cheapest, without any additional ingredients causing allergy issues.

I also have had iVs of phosphatidylcholine, though this only provided one of the needed lipids, the largest constituent of the membranes.
Any thoughts on D-Ribose, regarding potential negative side effects? I've stumbled on D-Ribose warnings a few times, so I've steered clear.
I agree about the negatives. I have also found that nicotinamide riboside is absolutely ineffective for me, and have found that either NAD+ or NMN are more effective for me without the drawbacks of the NR or D-Ribose. However, more of these is not better. I take enough to have a positive effect on my energy everyday, but I am not on a high dose like the biohackers. If any mutated cells are hanging around, too much NAD+ can make a cancer proliferate. It is not highly likely for most people, but as a cancer survivor, I don't want to push it, and I do fairly well on 125mg a day.
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
@Learner1

I am familiar with the smouldering virus theory, but I need a doctor and an insurance company to go along with it. If a test were available that would allow my doctor to write a prescription that would go a long way toward my goal. Is this a theory or a proven possibility?

I had a doctor at the Mayo Clinic that had very little knowledge of treating viral infections, he was a neurologist, but he was open to new ideas. After 25 trips to the clinic I gave up as there wasn't anyone there who understood ME/CFS. My doctor told me that no researcher there would put his career in jeopardy by wanting to research it. That was 11 years ago, so possible things have changed since. At least he would listen to what I had to say and I did manage to convince him to give me the Valcyte prescription. I probably should have fought harder to stay on the Valcyte longer, but back then this was very new and I wasn't sure how long I needed to be on the drug either.

My GP won't prescribe the drug and I don't know of anyone in the area that will. I don't want to send off to a foreign source as the price of the drug makes it very worthwhile to manufacture fakes. I also am not in a position to spend the thousands of dollars that would be required if insurance didn't cover it. Since I have tested positive for both herpes and enteroviruses, Valcyte won't do it all.

I believe that the smouldering virus theory is the most likely cause of this illness. My illness started with a cold and improved with an antiviral. I do believe that we need better antiviral drugs before a cure is found. I like to think that if we had one of Star Treks transporters that would be the answer. We would dematerialize, scan for viruses and then rematerialize minus the viruses. That would be a very quick cure. I guess that the second best answer would be a time machine, I would just go 100 years into the future, get cured and come back.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I am familiar with the smouldering virus theory, but I need a doctor and an insurance company to go along with it. If a test were available that would allow my doctor to write a prescription that would go a long way toward my goal. Is this a theory or a proven possibility?
I would print out Bhupresh Prusty's 2018-2020 papers and take them to your doctor. He has said that his finding apply to other herpes family viruses, and not just HHV6. There are talks that he has given and interviews that you can check this with.

What he has found is that the viruses don't have to be fully activated, they just sit there and smolder along, as you mentioned, and cause mitochondrial fragmentation, which causes a hit to energy production.
I had a doctor at the Mayo Clinic that had very little knowledge of treating viral infections, he was a neurologist, but he was open to new ideas. After 25 trips to the clinic I gave up as there wasn't anyone there who understood ME/CFS. My doctor told me that no researcher there would put his career in jeopardy by wanting to research it. That was 11 years ago, so possible things have changed since.
The good news is there's been a lot of good research published in the last 8 years that, if you follow it, and put the pieces together, it is quite possible to come up with treatments that are helpful. My doctors and I are reading papers and putting the pieces together, testing to see how my situation matches what's in the papers, and then applying treatments as it seems appropriate to do.
At least he would listen to what I had to say and I did manage to convince him to give me the Valcyte prescription. I probably should have fought harder to stay on the Valcyte longer, but back then this was very new and I wasn't sure how long I needed to be on the drug either.
Jose Montoya has said patients have been on it for 5 years. My doctor kept me on it for a year at a high dose, 1.8 grams per day, and then after I had a negative Epstein-Barr PCR test, he kept me on it for another 8 months at half the original dose, until I had three more negative PCR tests. I also had HHV6, CMV, and HSV2, but they were more difficult to test, But this is why valganciclovir was chosen, as it is effective for all of these.
My GP won't prescribe the drug and I don't know of anyone in the area that will. I don't want to send off to a foreign source as the price of the drug makes it very worthwhile to manufacture fakes. I also am not in a position to spend the thousands of dollars that would be required if insurance didn't cover it. Since I have tested positive for both herpes and enteroviruses, Valcyte won't do it
Definitely one needs to use the drugs appropriate for each set of viruses. Valganciclovir is appropriate for multiple herpes viruses, valacyclovir and famvir are appropriate for more limited sets of herpes viruses. I was originally started on valacyclovir, but my insurance would not let me take the 3 gram dose that my doctor wanted me on, they would only approve two grams a day. I am not positive about the correct treatment for enteroviruses, but there has been a lot of discussion on this site and you should be able to find the threads pretty easily.

As for doctors, it's important to figure out if a doctor is willing to help you and willing to do something a little bit out of their comfort level if appropriate information is provided to them. Some doctors, especially those working in a large medical system, are hemmed in by policy, or their own beliefs, and will not step out of the box even though a patient needs it. In this case, finding another doctor to prescribe might be wisest. I found the doctors who practice independently, admittedly who are fewer these days, are most likely to think for themselves, and consider scientific evidence shown them, and consult others to be able to help an individual patient.
I believe that the smouldering virus theory is the most likely cause of this illness. My illness started with a cold and improved with an antiviral. I do believe that we need better antiviral drugs before a cure is found. I like to think that if we had one of Star Treks transporters that would be the answer. We would dematerialize, scan for viruses and then rematerialize minus the viruses. That would be a very quick cure. I guess that the second best answer would be a time machine, I would just go 100 years into the future, get cured and come back.
I think you mean the Star Trek tricorder.

Screenshot_20201026-085333.png


Getting rid of viruses is important, however they do a lot of collateral damage, and the advantage to the tricorder approach would be to detect any biochemical abnormalities or physical damage leftover after the viruses, and help to correct that.

At this point, lab testing is also needed to determine biochemical abnormalities and mitochondrial damage caused by the viruses or fungal or bacterial infections and then those must be addressed too, as discussed in the mitochondrial correction paper I posted above. There are definitely other impacts beyond mitochondria that should be looked into, and I'm not ignoring these, but a lot of it is individual.

It sure would be nice to have that tricorder though... Or to travel into the future and be cured, and then return to the present. Although given the state of world affairs, I might choose to come back a year or two from now, and not to 2020...
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
@Learner1

I have been diagnosed with both coxsackie and echo enteroviruses. I just checked the www.enterovirusfoundation.org/overview website to see what is new in the treatment department and all it says is that they are working on it. I had the opportunity to talk extensively with Dr, Chia while I was at a conference in Reno back in 2009. Oxymatrine/Equilibrant still seems to be the best option out there. I do notice things get much worse for me if I stop the equilibrant which tells me that a real medication would help me.

I was under the impression that the tricorder was simply a diagnostic tool. Does Amazon sell these? How much? I suppose I will have to use my time machine to go to the future to get one. Great idea though!

Valacyclovir prices are reasonable enough that most people could afford it if insurance doesn't cover it. Meijer will sell you 21 pieces of the 1 gram tablets of the generic for $ 15.90, or 75 cents each. A while back I bought some from an offshore source but found that I couldn't tolerate it, so it is not an option for me.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I have been diagnosed with both coxsackie and echo enteroviruses. I just checked the www.enterovirusfoundation.org/overview website to see what is new in the treatment department and all it says is that they are working on it. I had the opportunity to talk extensively with Dr, Chia while I was at a conference in Reno back in 2009. Oxymatrine/Equilibrant still seems to be the best option out there. I do notice things get much worse for me if I stop the equilibrant which tells me that a real medication would help me.
As I mentioned, I am not an expert on enteroviruses or Coxsackie virus. you would have to talk to your doctor about it, or look into the current research, which it sounds like you're doing. If there's not a drug that specifically treats it, then looking at how to strengthen the immune system to fight it, replenishing anything depleted by it, and then doing anything to affect the mechanisms by which it proliferates or causes damage in your system would be the best strategies, from my limited knowledge.
I was under the impression that the tricorder was simply a diagnostic tool. Does Amazon sell these? How much? I suppose I will have to use my time machine to go to the future to get one. Great idea though!
Amazon sells all kind of stuff, but I don't think they sell the 24th century version of it which is really what we're looking for. There is a prize out there for scientists to develops one but the tools that are evolving today are ones that can capture blood pressure, blood sugar, and all of the usual things that track diabetesity, aren't much used to patients with ME/CFS.
Valacyclovir prices are reasonable enough that most people could afford it if insurance doesn't cover it. Meijer will sell you 21 pieces of the 1 gram tablets of the generic for $ 15.90, or 75 cents each. A while back I bought some from an offshore source but found that I couldn't tolerate it, so it is not an option for me.
well, I think you need to match up whatever drug goes after whatever problems you have, or better yet, in some cases supplements could have a better effect. And for most of us, it's not just one thing, it's several that will help us.
 

Mohawk1995

Senior Member
Messages
287
So I have come back to post on this forum after a lengthy sabbatical. I was just curious for the most part as to what changes may have happened. I was drawn to this post as my son saw Dr Lerner during the last few years of his life and was treated with Valtrex as a secondary medication with a primary treatment of Cidofovir infusions (6 over 12 weeks). He did not quite meet the 80% improvement, but he did make enough of an improvement that he was able to pretty much fully recover over the next 3 years. He is now 7 years out and doing well. He has not had any further tests done, but I did talk at one time of taking him to the Stanford Lab to get his blood looked at.

So being a Physical Therapist myself (I'm not a proponent of dogmatic CBT and GET) and a student of Neuroscience, I am more convinced now than I was 7 years ago that the impact of the antiviral had more to do with the turning off of his over-reactive neuro-protective mechanisms that were shutting/breaking down his mitochondria and creating otherwise general havoc on his system. He displayed all the features of an upregulated/hypervigilant system with significant neuro-inflammatory and neuro-immune responses. Could it be that there was a smoldering virus, yes. But I am not confident that is enough to create the issues many including my son have faced with this disease.

The only system in the body capable of creating such devastating systemic issues in my thinking is the nervous system.... if it is in an "over-protective" mode. Why would antivirals impact this? Because they are also very powerful neural stimulants. They have been now been successfully used in the treatment of Post-Concussive syndrome (arguably a form of ME/CFS) with the use of Amantadine. So perhaps it is more accurate to say there are many different forms of ME/CFS including those associated with viral onset, fibromyalgia, PTSD, Post-concussive syndrome, Lyme Disease and more, but they all share similar Neuro-protective, Neuro-immune, Neuro-endocrine and Neuro-inflammatory components.

Lastly, I want to say that this has nothing to do with psychology causing this just because I am proposing Neuroscience as the primary source. Conscious resources make up less than 10% of the nervous system. So 90% (the part where all of these Neuro-protective mechanisms reside) is not under our direct control. Not to mention that the human nervous system is infinitely more complex than any other structure in the known universe. Also making it supremely powerful when it comes to body functions (thus the use of brain dead as the definition of end of life). So although CBT may help some, it is surely not a cure.

Sorry to be so wordy and none of this discounts treatments that others have found successful. Just my view from where I have lived.
 

hunter1899

Senior Member
Messages
152
So I have come back to post on this forum after a lengthy sabbatical. I was just curious for the most part as to what changes may have happened. I was drawn to this post as my son saw Dr Lerner during the last few years of his life and was treated with Valtrex as a secondary medication with a primary treatment of Cidofovir infusions (6 over 12 weeks). He did not quite meet the 80% improvement, but he did make enough of an improvement that he was able to pretty much fully recover over the next 3 years. He is now 7 years out and doing well. He has not had any further tests done, but I did talk at one time of taking him to the Stanford Lab to get his blood looked at.

So being a Physical Therapist myself (I'm not a proponent of dogmatic CBT and GET) and a student of Neuroscience, I am more convinced now than I was 7 years ago that the impact of the antiviral had more to do with the turning off of his over-reactive neuro-protective mechanisms that were shutting/breaking down his mitochondria and creating otherwise general havoc on his system. He displayed all the features of an upregulated/hypervigilant system with significant neuro-inflammatory and neuro-immune responses. Could it be that there was a smoldering virus, yes. But I am not confident that is enough to create the issues many including my son have faced with this disease.

The only system in the body capable of creating such devastating systemic issues in my thinking is the nervous system.... if it is in an "over-protective" mode. Why would antivirals impact this? Because they are also very powerful neural stimulants. They have been now been successfully used in the treatment of Post-Concussive syndrome (arguably a form of ME/CFS) with the use of Amantadine. So perhaps it is more accurate to say there are many different forms of ME/CFS including those associated with viral onset, fibromyalgia, PTSD, Post-concussive syndrome, Lyme Disease and more, but they all share similar Neuro-protective, Neuro-immune, Neuro-endocrine and Neuro-inflammatory components.

Lastly, I want to say that this has nothing to do with psychology causing this just because I am proposing Neuroscience as the primary source. Conscious resources make up less than 10% of the nervous system. So 90% (the part where all of these Neuro-protective mechanisms reside) is not under our direct control. Not to mention that the human nervous system is infinitely more complex than any other structure in the known universe. Also making it supremely powerful when it comes to body functions (thus the use of brain dead as the definition of end of life). So although CBT may help some, it is surely not a cure.

Sorry to be so wordy and none of this discounts treatments that others have found successful. Just my view from where I have lived.

Very interesting. Do you mind if I ask what viruses your son had originally?

I had mono at the start of the year and just today got results saying my IGM for EBV, CMV, and HHV, we’re all negative, but I do I have a positive IGG for these negative EA for EBV). So my doctor doesn’t think viruses are contributing to my symptoms. I did test positive for three molds so he’s treating that exclusively.
 

Mohawk1995

Senior Member
Messages
287
No that is fine. Primarily HHV-6 and EBV. He did have a viral onset, but had severe symptoms for 5 years that ebbed and flowed. Viruses are tricky because you can test positive to them and not have an active infection. Meaning other people without symptoms can test positive to the same thing. Molds I think are maybe a bit different, but I am no expert in them. Our son was treated as atypical migraines for 4 years prior to seeing Dr Lerner as headaches were the most disabling feature. That treatment was primarily Neuro focused and helped him somewhat. Thankfully he did not do the dogma CBT and GET, although we did work to encourage him to stay as active as he could. Best to you in your journey!
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I had mono at the start of the year and just today got results saying my IGM for EBV, CMV, and HHV, we’re all negative, but I do I have a positive IGG for these negative EA for EBV). So my doctor doesn’t think viruses are contributing to my symptoms. I did test positive for three molds so he’s treating that exclusively.
Treating the mold is definitely important. I had several doctors blow off my high IgGs, til one ran a PCR, which was positive. Additionally, if you look into Bhupresh Prusty's papers, you'll see that he found the herpes family viruses don't have to be fully active to cause a lot of problems, including mitochondrial fragmentation.

Valcyte wa ms a game changer for me, and I wouldn't have gotten it if my doctor hadn't been willing to try to treat the viruses.
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
@Mohawk1995 Your belief in the antivirals actions is very interesting to me. Back in 2008 when I was taking Valcyte I was suffering from very low blood pressure and pulse among other problems. I took daily BP and pulse readings during the 10 months I took the Valcyte and put this information into a graph. At a conference in 2009 I showed this graph to Dr. Cheney and talked to him about my improvements and he said that it may not have been the killing off of the viruses, but the, and I don't remember the exact words he used here, Neuro-protective effects of the drug.

I have no medical training on which to base this, but I believe that my 30 year long headache and my loudly ringing ears are telling me that there is more than just a viral infection happening in my brain. My doctor stopped prescribing the Valcyte several months after the improvements seemed to stop. Did I stop too soon? I wish I knew, but it seems to me that if the virus was still present it would begin reproducing again and my condition would worsen over time, which hasn't happened. I am pretty much the same condition as I was in when I stopped the Valcyte eleven years ago.
 

Mohawk1995

Senior Member
Messages
287
I have no medical training on which to base this, but I believe that my 30 year long headache and my loudly ringing ears are telling me that there is more than just a viral infection happening in my brain. My doctor stopped prescribing the Valcyte several months after the improvements seemed to stop. Did I stop too soon? I wish I knew, but it seems to me that if the virus was still present it would begin reproducing again and my condition would worsen over time, which hasn't happened. I am pretty much the same condition as I was in when I stopped the Valcyte eleven years ago.

jstefl,

I think what people are experiencing is the most important and perhaps least utilized tool to assess them. What you are saying is that your experience supports the Neuro-protective model. I am always open to new lines of thinking. I have also found it very frustrating for us personally and for other people suffering from what I would call Neuro-protective issues to continue to search for an "organic" cause. It is absolutely organic, but Neurophysiology is so complex and misunderstood that is is difficult to describe in terms of tests we can perform. The challenge is finding treatments that make a sustainable difference. I would be very cautious of going to someone who promises a "cure" for this disorder. It is most likely that there are treatments that can help most but not all people with ME/CFS.

I would stress that although Dr. Lerner was confident he could help our son, he did it in a way that gave us realistic hope. We are most fortunate to have gotten positive results from the treatments and the rehabilitation process, but we are well aware that many do not receive the same level of benefit. So we have great admiration for those who do not gain much benefit, but fight to go about their lives the best they can.
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
@mohawk95 One of the things I have learned during my 30 years of illness is that doctors are terrible at diagnosing. I had at least five doctors over the years prescribe antidepressants for various symptoms. My cardiologist thought that my 80/50 blood pressure and 50 pulse could be fixed with an antidepressant. Not one of the many doctors that I have seen has asked about my family history, which I think is relevant. Both my father and his brother had ME/CFS like symptoms that resulted in their early passing.

I have had testing by both Dr. Chia and ARUP labs to confirm that I have several different enteroviruses living inside me. I know that I also have herpes viruses feasting on my cells. This, however, doesn't make me unusual to any great extent. I would love to eliminate those viruses but really have to wonder if that would cure me. I have a copy of Dr. Lerner's patent and have heard the smouldering virus theory, but I really am not convinced that viruses will just remain at a constant level in your body neither increasing or decreasing over a period of eleven years since I stopped Valcyte. We know that many healthy people are also filled with viruses of a similar kind.

It is wonderful that Dr. Lerner could help your son. One of my greatest fears is that this illness will strike my sons. Several of the prominent researchers are doing it because of a sick child, including Dr. DeMeilier, Dr. Chia, and of course Dr. Davis. It is really sad that a personal tragedy has to strike before a doctor will take ME/CFS seriously.

When I first contracted this illness back in 1991 it would have been very helpful to have had an understanding of what this was all about and what to expect. Years of very bad medical advice certainly made the situation much worse that it needed to be. Lets hope for a better future.