Studies find HHV-7 active in ME, yet ME Drs often don't test for it & Valcyte doesn't work for HHV-7

Hip

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Seems like your symptoms for CEFS will be worse if it hits your blood to a point able to be detected by PCR.
That's certainly what Dr Chia found with his enterovirus ME/CFS patients. Whether the same applies to herpesvirus ME/CFS I am not too sure, I've not seen any research done on this by the herpesvirus ME/CFS doctors like Peterson or Lerner.


Do you know if that process of hitting your blood has to happen with the initial infection or could it occur later in the process. Just wondered if there was any data on that, given it sounds like if you have IGG you still have an active infection--which i would think could then spread.
In the initial acute infection you would normally have virus in the blood that is detectable by PCR. In any acute infection, it takes a few days for the body to create antibodies which target the pathogen, and in that time the pathogen runs riot on the body, and there is virus in the blood. Then once the antibodies are made, the infection is brought under control.

The infection is then either entirely eliminated from the body completely (as occurs with the rhinovirus cold virus), or the virus may hide away in cells as a latent infection (herpesvirus does this), or as a low-level intracellular infection (coxsackievirus B and echovirus do this).

So then you usually no longer find any virus in the blood plasma.

Dr Chia thinks that ME/CFS involves chronic infections of the tissues, such as these coxsackievirus B intracellular infections (these intracellular infections that enterovirus can cause are known as non-cytolytic enterovirus infections).

But I guess when the tissue infection is severe enough, some of the virus spills out into the bloodstream.
 
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@Violetta Kolosova
Hello Violetta,
1) Would you be able to give me the address to Dr Maltsev's clinic in Kyiv please? (I was unable to find it, because there are several Maltsev named doctors in Ukraine.)

2) Do you know how often Dr Maltsev treats CFS/ME? There are millions of sufferers around the world. And thus millions of parents and children who are desperate for relief.

3) I am a bit puzzled because if Dr Maltsev has success, then surely his protocol would become known in other parts of the world. He does not seem to have joined the international specialists.

4) I would like to call his clinic and find out what they are offering. Did they do all your testing once you went over to Dr Maltsev? And did you have to stay in Kyiv, or were you able to return back to Russia and continue treatment there? Lodging in Kyiv is expensive.

5) If you could offer a few words about the facilities in that clinic in Ukraine, I would appreciate this.

6) I read all your earlier posts from last year and so on, and I very happy you feel better.

7) I know you understand that this situation with this illness is critical, as there is no standardised treatment. Skepticism is normal, too, however. We have travelled all over the world for treatment and the result is nothing. We did not travel to Ukraine, because I know how hard it is for the Ukrainian citizens to get good medical help, and I know the strains on the system because of the war. But if you would be so kind as to let me know the name of the clinic, or their address, or even Maltsev's first name, I would be grateful. Thank you very much, and I will look into your website too. It looks very professional.
Hi!
Sorry for such a late answer.

1.
Here is a link to the clinic's website, in which he is currently working. In Russia and Ukraine, the practice of communicating with a doctor directly before the consultation is not common, I even do not have his personal phone, so I give the clinic contacts for an appointment. online consultation is also possible.
http://vivereclinic.com/
Maltsev Dmitry Valerievich


2.
Many people whom Maltsev tried to treat did not withstand the difficulties of treatment, and from here spread negative reviews on the Internet. Many people can not afford his treatment financially, many can’t cope with the idea that there will be exacerbations and no relief at the treatment courses (long and difficult), and that relief will come only months after full courses.
Also, many people cannot realize that there are cases when you cannot be cured 100% - in cases like mine, with genetic so-called minor immunodeficiency, but you can only get more or less stable remission and that if necessary you will have to return to immunotherapy. Many do not want to risk, because. prescribed drugs are difficult to tolerate and have side effects.

Therefore, I can honestly say that only a few are able to undergo treatment. Since people often quit his treatment, it’s hard for me to say who could really complete all the courses and get remission. Negative reviews are written mostly by people who have not overcome the treatment - physically or morally or financially. From my forum I know three people who received remission with active herpes type 7 and immune problems, similar to mine, and eventually got rid of CFS.

3.
There is not and cannot be, in principle, no single protocol. Immunology is not the branch of medicine where any protocols are possible. This is a completely different paradigm. Treatment of immune problems is then successful when it is as personalized as possible, i.e. individualized. All drugs are selected on the basis of tests of each individual. Therefore, it is dangerous to share treatment regimens of strangers, give your schemes to others and use other people's methods on yourself.

Since what is well suited to one person according to their tests, it is completely inappropriate and harms another. I consider it a huge mistake of Western medicine as a concept in that medicine is looking for some kind of uniform treatment in such a strictly personalized branch as immunology. I believe that the future is generally behind targeted immunotherapy, when we can clearly identify the specific individual breakdowns in the immunity of each individual person and eliminate the problems in immunity that are only inherent in this person only with drugs that are necessary for him. otherwise, we are like trying to wear someone else’s dress, which does not suit us.

4. no. As I said above, the treatment is chosen individually,according to your test results, state of health and diagnosis. I can only
approximately name the range of drugs which the doctor operates with; there is nothing particularly new to immunology here.
Yes, most often I left to be treated home, but by the fact that in the USA and Europe no one will be treated according to his schemes , if you e.g. need IVs - this can be a problem. Also, some drugs to be exported by patients from Ukraine since they can not be bought outside. Some drugs are also prescribed off-label.

living in Kiev is not so expensive if you live in cheap hotels or on apartments for rent.

5.
There is nothing special in this clinic, the clinic is small, new and quite expensive. There is a small day hospital, an anesthesiologist, and a rehabilitologist who works with children who are on immunotherapy. In addition to this clinic, Maltsev does a lot of science, teaches, works at the Bohomolets Institute, and still works in some budget hospitals.

There is nothing special in this clinic, the clinic is small, new and quite expensive. There is a small day hospital, an anesthesiologist, and a rehabilitologist who works with children who are on immunotherapy. In addition to this clinic, Maltsev does a lot of science, teaches, works at the Bohomolets Institute, and still works in some budget hospitals. Foreign patients are provided with an interpreter, if they are provided with a full package of medical tourism services upon special request and at an additional cost. There is also a service of taking tests at home and delivery to the laboratory, same for delivering results.

6.

thank you very much! I am glad that I could overcome all this long trial. unfortunately, I recognize the fact that my immune system from birth was unable to work 100% normal, but at least I know the pattern of my own immunity in more detail and I hope that if the disease returns, I already have a possible idea how fight. I hope that my immunity will not do me new tricks!

7.
as I said, I see this problem completely differently. I believe that there is no single disease called CFS, for which Ron Davis is looking for a single cause and a single treatment. There is a well-known infection. Someone has herpes, someone has an echovirus, someone has a Coxsackie, someone has mycoplasma, etc. but this is not some new thing unknown to science. If this infection falls into poor immunity or, if we are already carrying the infection , the immune system falls under the influence of a trigger or is degraded inborn - develops a state of CFS. There are hundreds of immunity disorders, the so-called small immunodeficiency. There are still very few known and available for correction.


The problem is one, it is immune dysfunction. but the specific disorders in the immunity of different people may be different. That is why you can never find a single cause of the disease. Therefore, the only thing that is common in this disease is damage to the immune system. the rest is all different. one can even say that there is no single disease at all. CFS is a rather a collective term for many problems with immunity,
which unfortunately is very poorly investigated



There are no signs of war in Kiev, at least for ordinary citizens they are not visible. I can very easily enter this country, despite Russian citizenship. ordinary Russian and Ukrainian people are friends of each other so there is no threat or danger for me. All that the media do on TV is mostly not true. So I haven't been watching TV :)

I also saw people who came to Maltsev for treatment from Poland, France, and Germany.



I hope I answered most of your questions. If you have additional questions, you can write to me at any time. I'm sorry for my bad English.
I am also sure that you will be able to find your way to health!
 
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Was all this treatment prescribed by Dr Maltsev? He seems like a great doctor. Does he specialize in treating ME/CFS?
he is a scientist whose sphere of interest is in the study of the causes of pathological inflammatory reactions of the body, autoimmune diseases, chronic fatigue syndrome and autism and the role of viruses in their development. The clinic’s management plans to make the approach to the treatment of viral diseases holistic, through the involvement of pediatricians, neurologists, psychotherapists.
 

Hipsman

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@Hip could you add Dr.Maltsev (Maltsev Dmitry Valerievich) to your mecfsmap?I am from Ukrain and currently seeing him. I heard of him from Violetta on her forum, he looks to be the only good mecfs doctor in Ukraine and Russia.
 

Hip

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@Hip could you add Dr.Maltsev (Maltsev Dmitry Valerievich) to your mecfsmap?I am from Ukrain and currently seeing him. I heard of him from Violetta on her forum, he looks to be the only good mecfs doctor in Ukraine and Russia.
I certainly can. Would you have details of his office address, any website he may be on, and some brief details of the treatments that he uses (I like to include on the map a one or two sentence summary of the treatment approach each ME/CFS doctor uses).
 

GlassHouse

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Oh this is very relevant to me!

I am positive for HHV-7 DNA in my spinal fluid, signaling an active infection that has lasted over 8 years (I always had EDS and POTS but became severely ill with multiple organ dysfunction/ failure after having encephalitis).

After the very high fever I developed a progressive altered state of consciousness. I cannot stay awake. Once I was asleep 21 hrs. It has been measured that my most wakeful is equivalent to a normal person who is 48 hours sleep deprived. It’s excruciatingly painful. Sleep studies show normal sleep pattern at night, and no narcolepsy, but extreme sleepiness during the day (I had my drivers license suspended after the first sleep study). I also have fatigue (measured by 2-day CPET) which is different from the sleepiness.

I’m asleep 12-16 hrs day and begin to fall asleep again after 1-2 hours of being up.

I have also tested positive for HHV-7 in tissue samples from my stomach, duodenum, ileum, and colon.

I assume the HHV-7 caused my gallbladder failure in 2013 and hepatitis in 2015 and gastritis and colitis in 2018. These were all “idiopathic” organ problems. And my sleep problems are referred to as “idiopathic hypersomnia” but it seems clear now that the cause is the active virus in my brain and all my organs.

I’ve been on oral Valcyte for about a year with no difference.

I want to try another drug but my doctors are nervous because they (Dr Kaufman and Dr Peterson) say I’m too sick for IV meds.

I need to talk to them more to understand better why they think the risk outweighs the benefit. If there’s even a chance of waking up I want to take it!

Perhaps it’s because I can’t risk an infection in the IV because antibiotics for me always mean severe c diff and weeks in the hospital in septic shock. Or it’s that they want me on IVIG first to boost my immune system.

I’m sure they know much more than I do. I’m just willing to try anything to get better. I try to be patient but it’s hard. I just turned 29 this May and have been very ill since 21.
 

GlassHouse

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Is this IVIG or something else? Sorry if you already explained :xeyes:
They mean the IV antivirals. Cidofovir is the one being considered. Foscarnet can’t be injected in a peripheral vein if I remember correctly.

The type of IVIG I’m trying to get is Hizentra (sub cutaneous IgG). I think we’re been trying for 9 months to get insurance coverage but they keep refusing the peer to peer phone call.

My insurance has also been denying all labs, doctor visits, and medications (sometimes they write the wrong name, sometimes they file it for the wrong state, and sometimes it’s just “processed wrong”). And I’m paying around $1000/ month just to keep my PPO because HMOs don’t cover any of my problems.

Thankfully my husband is willing to spend hours on the phone with them, insurance sucks away any energy I have.
 

GlassHouse

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Sorry to spam this older thread but I wanted to add that I have NEVER tested positive for HHV-7 in the blood. So just because the blood test is negative doesn’t mean you don’t have it.

I’m PCR positive in spinal fluid and tissue samples but always negative in the blood.

I explain it to my husband like this: “you spend most of your day at home or at work and only a little time traveling between them. Trying to measure the infection in the blood is like trying to find the 30 minutes you’re in a car.”

The infection definitely travels through my blood but I think it does so rarely and it mostly just replicates in various tissues.
 

Gingergrrl

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They mean the IV antivirals. Cidofovir is the one being considered. Foscarnet can’t be injected in a peripheral vein if I remember correctly.
Thx for clarifying and I am sure you have already told me this :)

The type of IVIG I’m trying to get is Hizentra (sub cutaneous IgG). I think we’re been trying for 9 months to get insurance coverage but they keep refusing the peer to peer phone call.
:bang-head::bang-head::bang-head:

Thankfully my husband is willing to spend hours on the phone with them, insurance sucks away any energy I have.
God bless him and I wasted countless hours of pure frustration/torture dealing with my former insurance company during the 2 yrs that I was getting IVIG. I am finally on a better insurance as of 2019.

I explain it to my husband like this: “you spend most of your day at home or at work and only a little time traveling between them. Trying to measure the infection in the blood is like trying to find the 30 minutes you’re in a car.”
That is a very good analogy and I wonder if it also applies with autoantibody testing being in other places in the body besides the blood (or just to viruses)?
 

Hipsman

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I certainly can. Would you have details of his office address, any website he may be on, and some brief details of the treatments that he uses (I like to include on the map a one or two sentence summary of the treatment approach each ME/CFS doctor uses).
Clinic site: vivereclinic.com ; address: Kyiv, Mykhaila Lomonosova St, 71Г
His website: https://doctormaltsev.com/
Also is active on facebook: https://www.facebook.com/profile.php?id=100034565934081
Scientist whose sphere of interest is in the study of the causes of pathological inflammatory reactions of the body, autoimmune diseases, chronic fatigue syndrome and autism and the role of viruses in their development. Specializes in treating rare and difficult cases. He does not only aim at finding an accurate diagnosis but he also treats herpes type 7. He manages to decrease the viral load, and then conducts immunocorrection therapy. He digs deeper and takes a personalized approach to a patient which is of utmost importance, as everyone tends to have different and unique immune system abnormalities. Standard approaches do not apply.
 

kday

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I did shotgun analysis of my saliva myself (from unmapped WGS reads) and I noticed that I have HHV-7 DNA in my saliva. I was surprised that I never hear anything about HHV-7 and knew nothing about it.

Not that I necessarily believe this means a whole lot, but it's interesting because my titers for HHV-6 are normal and I've never been exposed to EBV. I also may have a little HSV-1 (not seen in this chart). But my titers for Coxsackievirus are incredible and weird. Max titers for every strain in both A&B.

Here's a chart of my viral shotgun analysis. Majority of things are normal bacteriophage viruses. The HHV-7 is the teal part of the bottom of the circle.

Is there any anecdotal evidence that treating HHV-7 is helpful?

1568412046181.png
 
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Hip

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Coxsackievirus are incredible and weird. Max titers for every strain in both A&B. But no DNA in my saliva.
That does not sound right, which lab tested you for coxsackievirus?

It's normal not to find coxsackievirus B RNA in the blood and fluids of the body in ME/CFS. The infection is found in the body tissues, not the blood.

If you were to perform the same shotgun metagenomics on say stomach tissues, you might get a positive result. That's assuming that your shotgun metagenomics can detect RNA viruses (enterovirus is an RNA virus, not DNA virus).
 

kday

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That does not sound right, which lab tested you for coxsackievirus?

It's normal not to find coxsackievirus B RNA in the blood and fluids of the body in ME/CFS. The infection is found in the body tissues, not the blood.

If you were to perform the same shotgun metagenomics on say stomach tissues, you might get a positive result. That's assuming that your shotgun metagenomics can detect RNA viruses (enterovirus is an RNA virus, not DNA virus).
Yeah, not RNA viruses unfortunately (I knew that but forgot for a second when I wrote the above post). But there are ways to get that testing.

The test for Coxsackievirus was through LabCorp.
 

Hip

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The test for Coxsackievirus was through LabCorp.
Did you have high titers to CVB6 as well? Because that serotype is almost never seen, so if you had high titers, it suggests something was weird about that test result. Dr Chia found that the only reliable antibody blood test for CVB is the ARUP Lab micro-neutralization test.
 

Hipsman

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I have 1000 copies of HHV7 in blood (PCR), but no HHV6 in blood. Didn’t do antibodies. My only option is Valcyte, some people claim that Valcyte vanished HHV7 from their blood and they got better.