I made the long trek from Las Vegas to Santa Rosa hoping to find answers to mysterious questions such as “What is the origin of XMRV?” or “Why would a retrovirus spread like an epidemic at Incline Village in a high school?” Do I have more answers now? I do know I made a wise choice to drive from Vegas. My trip was more fun than Dr. Mikovits’. She was stuck on a plane in Reno for several hours.On the way up I marveled at the mysterious fog covering California. On the way back I wondered at Santa Cruz seeming to be a ghost town with virtually every beachfront restaurant not open for breakfast. There’s a lot I don’t understand. I did get some clues as to why I test negative so far for XMRV.I got answers or “almost answers” to many questions about this creeping retrovirus, XMRV. Here I am listing my observations. I will post a link to Dr. Mikovits’ presentation as soon as it is available.
- The retrovirus(s) has a high level of sequence diversity or different strains. The NIH (Alter and Lo) found a P (polytropic) MRV strain. This means that if you are infected with the PMRV strain you will currently test negative at The Whittemore Peterson Institute (WPI). Mikovits is working to develop more accurate testing for both strains. She hopes to have a test for PMRV by June 1, 2011.
- It takes up to 45 days to grow a culture from blood, if the retrovirus is in the blood at the time.
- XMRV leaves the blood and hides out elsewhere in the body until you are stimulated with another infection. [This could explain that the early outbreaks at Incline Village, NV, Lyndonville, NY and Raleigh, NC were caused by a secondary contagious infection superimposed on an existing XMRV infection.] Replication of XMRV is stimulated by inflammation and hormones.
- There do seem to be clusters of 20 to 400 patients in outbreaks in specific locales.
- Possible infections that enable XMRV to multiply would include EBV, HHV6, borrelia, babesia, bartonella, other?
- In families where there is XMRV infection 30% will develop severe mononucleosis (EBV) at puberty and never recover.
- If you test negative for XMRV in blood it may be because XMRV is not actively replicating in the blood. Dr. Cheney has suggested getting a flu shot which may activate the XMRV. [I think this may have been a joke: not that it wouldn’t work.]
- In chimp studies the virus very quickly left the blood and went into reservoirs, lymph node, spleen, liver – maybe thyroid, sex organs, adrenal glands, salivary glands, brain.
- Current studies are ongoing (Eva Sapi) to see if there is an animal vector (mouse, tick) that might carry XMRV. [See Dr. Timothy Luckett http://cfidsresearch.blogspot.com/2011/01/xmrv-could-likely-be-emerging-zoonotic.html%5D
- Stress elevates cortisol levels which would in turn activate XMRV.
- Patients who are the sickest and patients sick for the longest time tend to test positive with XMRV in the blood.
- Some patients have a positive culture test but no antibodies. If they are treated and begin to get better antibodies for XMRV will show up.
- Paul Cheney, MD at the Cheney Clinic in North Carolina is seeing 81% of his chronic fatigue syndrome patients testing positive for XMRV. Males and females are equally sick with CFS. Family members of CFS patients are testing positive for XMRV at a rate of 50%. Family members are commonly found to have these issues: autism, fibromyalgia, mononucleosis and cancer.
- Given the high percentage of family members infected, transmission must be both casual and blood borne.
- The immune system of an XMRV positive CFS patient is found to be low in NK cells, CD56, DC19+ B cells are replaced with DC20 B cells which are immature and poorly functioning.
- Rituxan, a drug approved to treat rheumatoid arthritis, functions by killing these immature B cells and may work to kill XMRV by killing these infected B cells.
- One Lyme specialist found that all 65 Lyme patients he had tested for XMRV came back positive. Gordon Medical found 50% of their CFS and fibromyalgia patients were positive.
- If you have any of these labels you may find you are XMRV positive: Lyme, MS, Parkinsons, ALS, peripheral neuropathy, autonomic neuropathy, dementia or Gulf War Illness.
- What can we do to treat? If you test positive you may want to get an AIDS specialist to prescribe a triple combination of antiretrovirals: AZT, raltegravir, tenofovir. Dr. Joseph Brewer is finding his patients with XMRV are showing 20% improvement on these anti retrovirals.
- If you don’t want to take those yet, even though they are very safe under a doctor’s supervision, you can do some things a lot of us have already found helpful, namely boost the immune system and treat co-infections.
- Antibiotics for Lyme disease infections may be help. Antivirals for HHV6 and EBV may help.
- In Japan there was an epidemic of HTLV-1. Stopping breastfeeding stopped the epidemic.
- Taking anti-inflammatory drugs will reduce the replication of XMRV. If you can reduce inflammation and lower cortisol you will reduce XMRV. [This could explain why some of the natural treatments have helped CFS patients including meditation and deep breathing.]
- Potential treatments, for now, include reducing oxidative stress, increasing methylation and raising glutathione levels. [Now we see why nondenatured whey protein and B vitamins help.]
- Valcyte, Valtrex and Ampligen may reduce viral co-infections.
- If a patient has Lyme the treatment must include treatment for Lyme and XMRV.
- Dr. DeMeirleir is experimenting with GcMAF to treat XMRV infected patients. This makes sense as GcMAF is an immune modulator used to treat AIDS and certain cancers. Google it. It can only be purchased in Europe at this time.
- Stem cell therapy may be helpful in the future.
- Simple things you can take now that might help include Deplin (a medical food prescription) and N–acetyl cysteine or NAC.
- XMRV does seem to be related to certain cancers: chronic lymphocytic leukemia, mantle cell lymphoma an other non-hodgkins lymphomas.
We can help ongoing research by contributing to:
Whittemore Peterson Institute, Reno
Mail Stop 0552
1664 North Virginia Street
Reno, Nevada 89557
In conclusion I want to say that WPI is putting together an outstanding group of researchers and clinicians to study and TREAT patients. Key clinical leadership people will be the following doctors:
- Dr. Jamie Deckoff-Jones, M.D. Director of Clinical Services
Clinical Advisors will be:
- Joseph Brewer, M.D. Infectious Disease
- Jack Burks, M.D. Neurology
- Marcus Conant, M.D. HIV
- Robert Fredericks, M.D. Endocrinology
- Michael Snyderman, M.D. Oncology
Paula Carnes 
Hi pjeanneus.. you said:
“# The retrovirus(s) has a high level of sequence diversity or different strains. The NIH (Alter and Lo) found a P (polytropic) MRV strain. This means that if you are infected with the PMRV strain you will currently test negative at The Whittemore Peterson Institute (WPI).”
I don’t think that statement is entirely accurate; recent studies at the WPI have been able to pick up both strains using some different techniques than were originally used in the Lombardi study, and to identify which strain a subject carries by individual cloning and sequencing. I don’t know about VIPDx’s culture test, however. The VIPDx serology test was advertised, at least, as being able to detect either strain, and if it uses the SFFV env antibody used in the Lombardi study, then it should.
My understanding is that the testing available by June 1, 2011 will include the P variant strain of XMRV or PMRV. I am hopeful that a lot of us who are now testing negative will then test positive, thus the title of this blog “Testing Negative – Staying Positive”.
Thank you for sharing your experience of the Santa Rosa talk. It is encouraging to hear all the developments in the science, but I am equally encouraged by the fact that WPI is putting together this outstanding group of researchers and clinicians to both study and treat patients. I was aware that Dr. Deckoff-Jones was the new Director of Clinical Services, but I was not aware of the association of the other doctors you listed. I am encouraged to see familiar and well-respected names.
WPI is continuing to lead in XMRV research, and now it seems that WPI will soon be in the forefront of treatment.
Patricia Carter
XMRV+, 24 years M.E.
I think mold-biotoxin illness will also be a factor. http://www.biotoxin.info and survivingmold.com
Wow! What a great source of information! Thank you for attending and for giving us such an easy-to-read report.
Thank you for the comprehensive overview! 🙂
Hi Paula,
Nice summary!
I have a couple of corrections for you. In the Gordon Medical Group, the statistic is not that we found 50% of our CFS and fibromyalgia patients were positive. What we found, so far, is that 50% of our XMRV positives also have Lyme disease. Not every patient with Lyme is positive for XMRV. Our test population is a mixed group, sent to WPI blinded, in an attempt to see whether contact controls and patients with diagnoses other than CFS are positive for XMRV. In the contact controls, we are seeing a much higher rate of positives than is seen in the healthy population in the published studies. So it is clear that contact is a risk for infection, but Dr. Mikovits is NOT saying casual contact is a problem. These people see, touch, and work intimately with chronically ill people daily, or live with them. We are not talking about it being communicated like the common cold. Also, as in the other patient populations, men are infected at equal rates with women. Our numbers are not final yet, as testing is not complete with this patient group, and WPI does not have the unblinding yet, so they have not analyzed the results.
On testing the variant strains, WPI is still developing the tests for the P-variants. When they find something that may possibly be a virus, they run gene sequences to find where it might fit in the family tree. That is part of how they are currently using the samples from our office. VIP dx does not run the gene sequences, as I understand it. That is part of the difference between a clinical laboratory, which has validated tests, and a research laboratory, which is developing the validated tests. WPI testing is not the same as those run through VIP dx, because the researchers are working beyond the known, looking to learn more.
The video is being edited, and will go up on the website as soon as possible. With the big room and the lengthy talk, the video guy had quite a challenge to get easily viewable and easy to hear footage. It will have the slides included. I’m sorry it can be done more quickly, but it will be available to anyone interested when it is ready
Susan Friedl
Research Coordinator at Gordon Medical Associates
susan at gordonmedical.com
http://www.gordonmedical.com
Thank you for this summary, Paula! We are all starved for information like this.
I am wondering about autoimmune arthritis? I have AS, inherited from father. I have a male child with Aspergers (autism). I have a daughter who has persistent viral illness and fatigue. There is a lot of cancer in my fathers side and their spouses including early breast cancer, leukaemia, throat cancer. There are heart problems too, my aunt has had heart valve problems all her life and her dad, my grandfather died in his 40’s from a heart problem. Either we have the crappest genes in history or there is something underlying.
Oh yes! I think we are on the cusp of a huge breakthrough in autism and other mysterious illnesses. Keep up hope!
I know this sounds absolutely unthinkable,
but why not simply ASK someone who was there,
if he has any wild ideas how such a thing might have happened?
-Erik Johnson
Graduate: Truckee HS
Incline Village survivor
Mold Warriors Chapt: 23 “Mold at Ground Zero for CFS”
and still “Surviving Mold” after all these years
Hey Erik,
One thing stood out to me when Mikovits spoke Monday. I wanted to ask about the outbreaks. As you know, a retrovirus would not spread rapidly like a case of the flu where everyone gets sick fast in one school or one orchestra – Tahoe, Lyndonville, Raleigh. So how can we tie XMRV to these outbreaks? Well, the patients from these outbreaks are testing positive for XMRV. But, even more puzzle pieces come together when you hear Mikovits say that inflammation will case XMRV to replicate rapidly in the blood. So you get an outbreak of say, mono or folks already infected with borrelia and, bingo, you can get what looks like an epidemic with no recovery. I suspect mold toxins causing chronic inflammation would also set off chronic, severe, XMRV effects.
The big question I didn’t get to ask is this: Where the heck did XMRV come from in the first place? You wanna jump in and tell us?
Your question on the origin of xmrv was answered recently by Dutch scientist who think that xmrv comes from the mice and was transported to human by vaccines. Many vaccines seem to be made with cells of mice. It is just a scientific theory. But these guys have a lot of arguments going for them.
The original publication is in English: http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/abstract
Melvin, this is exactly the sort of information I was looking for. Thanks for posting this. (I can only add that the website link could be “Frontiers in virology” or “Frontier sin virology” hum…
Paula
Thank you for such a great summary!
I’m wondering about the possible influence of
– taking a NSAID (meloxicam) DAILY for several years in a row
– taking an additional anti-inflammatory (mesalasine) for the gut (= a crohn’s desease medication) every day
– taking AntiBiotics for about 1.5 years (vancomycin, amoxycillin, erythromycin, minocin, … pulsed)
– taking pregabalin (lyrica), also daily, to keep my CNS in check
on the outcome of XMRV/MLV testing.
Seeing as XMRV seems to be influenced by inflammation, infections and (stress)hormones.
Do you (or anybody) know where I could get some info on that issue?
I’ve tested negative (RedLabs and VipDx) so far but after reading your blog, it hit me when I woke up that my medication perhaps played part in the outcome of looking for xmrv in my blood?
Els, you are asking an excellent question. I wish I knew the answer as it applies to me also. The main suggestion I have is that you contact WPI and ask what you have to do to get tested in June once the new test is out. Meanwhile, on a different topic, watch out with the Lyrica. I took that for a few weeks. It helped my CNS symptoms but caused more vertigo which led to a severe fall. Then my opthamologist found I had developed new, rapidly growing cataracts in both eyes during the timeframe I was taking Lyrica. The cautions on Lyrica include blurred vision, although they have not linked that to cataracts yet. Keep an eye on your eyes.
Thanks so much for your addional info.
I’ll first try to ask dr. Deckoff-Jones about it.
I didn’t know the new tests will be out in June, so thanx for that information!
About the Lyrica … didn’t know about the possible effect on the eyes. Seeing (good word choice, ha!) as I already have very very bad eyes, it might be something to take into account next time I have to see my opthalmologist. Been taking it a few years now twice a day …
I even take the “old” version Neurontin to help me sleep as it works against the constant delta-intrusions in my brain (was tested in a sleep lab). It works much better than all the sleepmeds I ever tried before.
Don’t know what all these meds are doing to me in the long run, but I don’t see another option. Life was unbearable for so many years and with this cocktail of med it’s manageable if I keep within my boundries (housebound most of the time)
Biotoxin illness from mold especially can cause a sharp rise in cytokine activity. I have biotoxin illness as per Ritchie Shoemaker’s markers (www.biotoxin.info and http://www.survivingmold.com) and was diagnosed with lyme disease. We later found toxic black mold (stachyboctrys) was growing in our house. My mother has fibromyalgia and chronic pain. Her father died of prostate cancer. Her mother had a strange illness that would come and go and died when she did not wake up from anesthesia from heart surgery. My sister was bedridden for years and was her worst when living in a very damp basement apartment. If you read any of Shoemaker’s literature, it would make sense that a biotoxin exposure can trigger xmrv and keep it active until at least one removes from the mold source thoroughly and takes biotoxin binders if needed. I wonder how many of us have Shoemaker’s biotoxin suseptable HLA types as I do.
I can’t speak for Eric, but I think he is referring to mold-mycotoxins.
Wow, R, you sound like a classic example of all the bad possibilities. Yes, I totally think Dr. Shoemaker is on the same page with Mikovits in the sense that toxic mold is part of the toxic mix. I hope that all of the researchers working together with clinicians will help us regain some level of normal health. I wish you all the best.
Paula
Paula, I am just reporting what I observed at the inception of CFS, and try to avoid speculation.
In certain settings, the strange flu behaved like a completely different animal.
As you know from our discussions over the years, the only reason I agreed to participate in the Holmes et al CFS definition study group and start this new syndrome, was to try and get research into the mold connection to this illness.
-Erik
Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
Chester AC, Levine PH.
Georgetown University Medical Center, Washington, D.C.
Abstract
Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
PMID: 8148452 [PubMed – indexed for MEDLINE]
Erik, I think the toxic mold/sick building issue will be a big piece of the puzzle. I do appreciate the work Dr. Shoemaker is doing in this area. Toxic mold issues were not mentioned in any great detail at the MIkovits presentation this past Monday, but that doesn’t mean WPI is ignoring this. As you know, I wanted to ask specific questions about the outbreaks in the 1980s. I didn’t get to do that, and I don’t think Mikovits is willing to speculate. I certainly would not be if I were in her shoes.
Paula
Hey, thanks for the update. Hope you test positive one day. It’s as mysterious as chronic Lyme.
I have a couple of corrections too ( I attended the lecture as well):
“If you don’t want to take those yet, even though they are very safe under a doctor’s supervision, you can do some things a lot of us have already found helpful, namely boost the immune system and treat co-infections.”
They are not always safe–though certainly under a doctor’s supervision the likelihood of adverse effect is less.
Use of anti-virals and anti-retrovirals can come at a significant cost to the organ systems of the body.
“Dr. DeMeirleir is experimenting with GcMAF to treat XMRV infected patients. This makes sense as GcMAF is an immune modulator used to treat AIDS and certain cancers.[……..]
Stem cell therapy may be helpful in the future.
Simple things you can take now that might help include Deplin (a medical food prescription) and N–acetyl cysteine or NAC.”
She mentioned “Cerefolin NAC” as the second supplement, not plain ol’ NAC. Also, when mentioning these immune modulators, she mentioned the importance of following with anti-virals, as in most patients these treatments reactivate latent virus which will need to be dealt with.
Earlier in the talk she was speaking about how in many patients CD19 (antibody producing) is reduced and replaced with higher levels of CD20, which produce autoantitbodies. I am extrapolating here but that could suggest that using an immune stimulator for those people could exacerbate an auto-immune condition.
She suggested Rituxan, but that drug is a little scary IMO. She also mentioned that in ME/CFS patients they are finding higher clonal Gamma Delta T-cells which are associated with Lymphomas.
clarifying:
Wen I said above “Also, when mentioning these immune modulators” I meant GcMAF and Stem Cells (Judy also mentioned Ampligen and Petide T).
In my sentence it sounds like I meant Cerefolin NAC, which I did not mean, since it’s not an immune modulator but a folate and glutathione precursor 🙂
Omit part of the evidence which led to CFS,
and one is not seriously attempting to research CFS.
Simple as that.
I usually don’t get involved in blog comments. And I don’t know Erik but know of him. I dont’ think mold – biotoxin illness can be ignored. I wonder how many of us have one of Shoemaker’s HLA types. I have his multisuspetable, lyme and xmrv. (most likely pesticide poisoning as well and HM toxicity). I didnt get sick until I had stachy in my house and lyme. I could not tolerate the abx. They not only made me herx, they possibly made me sicker. I most likely had xmrv my entire life unless I got it from a tick. I dont think it will do much good to treat xmrv if you have mold illness that has not been addressed or still living in mold contaminated environment. There is also the issue of fungal infections from WDBs that are like lyme, living biotoxin factories. As Shoemaker has replicated many times, c4a counts (tgf-b1 correlates) go sky high when re exposed and those of us who cannot detox the mycotoxins or do so more slowly need to get them out and avod continued exposure to WDBs. I hope this element is not left out of the research and treatment considerations. I also have PCR pos and am not that sick that I am bedridden (house bound at times, have to seriously pace and use motorized carts at times, can no longer exercise or do sustained physical activity that most people can do without PEM) nor have I been sick for long.. 2 years with cfs.
As I have been thinking about XMRV and how it relates to all the other stuff we thought was causal for cfs – mycoplasma, toxic mold, borrelia, babesia, toxoplasmosis, HHV6a, EBV…- i have begun trying to determine how AIDS patients respond to all these factors. We know HIV suppresses the immune system as would XMRV.
So my question is this – someone ask Dr. Shoemaker if you get a chance – does having AIDS make it harder for the patient to deal with exposure to toxic mold?
Certain HLA types are supposedly predictable mold illness which can present with CFS like symptoms or CFS.. I am new to all of this and know there is a line and not sure how people need to define that.
My questions are: Does xmrv make one even MORE suseptable to mold illness OR does mold illness activate xmrv? One of other factors that can. I suspect so if cytokine activity can activate xmrv. Biotoxin illness also throws off cortisol as presenting too high or too low. Lyme will also activate the cytokine markers because it is a biotoxin producing bacteria. Chronic lyme presents at around 10,000 c4a and higher when herxing, and as I remember, the latest ILADS conference notes refer to the idea that herxxing can stimulate xmrv. Shoemaker shows super high levels of certain cytokines including c4a, tgf-b1, MMP-9 and others when exposed to toxic molds, even in those who are not suseptable to biotoxin illness, as I understand. Those that are not suseptable, clear the toxins and the cytokines go down. Those who are suseptable as identified by HLA markers do not clear so easily. My c4a was around 10,000.. exactly where if I remember correctly he puts chronic lyme patients as well as those who have been exposed to toxic mold or other biotoxins and have not resolved the biotoxin exposure or the biotoxin pathway which includes VIP and MSH.
Biotoxin illness is a chronic state of cytokine upregulation.
Stachybotrys was found at ALL of the locations cited in the abstract above.
One can reasonably treat this clue with cavalier disdain, up until they have seen that this was part of the evidence-base which “CFS” was originally coined to research.
But after?
From what I understand….
One big mold hit or series for one with the suspectable HLA types would most likely result in activation of the biotoxin pathway and upregulation of cytokine activity. I think unresolved biotoxin pathway can result in CFS (like symptoms.. I dont understand the line with the defiintion.. I am talking bedridden) or can activate xmrv if cytokine activity can activate xmrv. Something activated mine in the past 5 years at the age of 43, or I caught it from a tick bite. I have elevated cytokines as per Shoemaker and my biotoxin pathway is compromised, or primed.. VIP, MSH, VEGF, etc.
Even if you do not have a suseptable HLA type and are exposed for long enough or to high enough amounts of biotoxins, you might well develope mold illness until you get away from the source and your body detoxes.
I do wonder if the extent of biotoxin pathway damage determines CFS status or if there are other factors such as xmrv being activated that futhers the damage.
If I didnt get xmrv from a tick, then I think given my family history that it “runs in the family” and if so, I see different presentations.. why?
Apparently, the main reason that so little is known, is that so few want to know it.
I think the only researcher that I am aware of referring to mold is Rich Van Konynenburg. He refers to mold along with lyme and other toxins as continuing to deplete glutathione.
http://forums.aboutmecfs.org/content.php?337-Dr.-Mikovits-Talk!-The-XMRV-CFS-Santa-Rosa-Lecture-Part-II-by-Lannie
Dont see mold illness, biotoxin illness mentioned here, though I see glutathione and methyaltion as potential issues and very interesting the correlations being foiund between lyme and xmrv.
Like I said. i was fine enough, worked out, walked 4 miles 4-5 times a week, got quite a few colds though.. had children, then lyme – mold exposure (biotoxins pathway compromised) and now xmrv pos dna-pcr only, antibody neg.
If I didnt get xmrv from the tick, then lyme and or mold triggered and shoemaker considers lyme a living biotoxin.
R,
I just started reading Dr. Ritchie Shoemaker’s new book “Surviving Mold.” He has done a great job of describing his work and patients’ experience in a way the average person like me can understand. I hope to post a summary of the book here soon. Meanwhile, the book is well worth buying and reading.
I have questions. If we could reduce the viral load of XMRV would we then be better able to clear toxic mold? Do genetics control our ability to clear mold toxins? Is mold the big player on the board or is it the retrovirus?
My personal pet notion on this is to look at AIDS patients who have been exposed to mold toxins. Are they able to clear mold toxins?
Paula Carnes
hi Paula,
I mentioned in a previous post that I’m xmrv negative.
Half an hour ago I received a new letter from prof. De Meirleir’s office with results of a test I thought was already included in my previous test-results. I guess this new letter is about the WPI serology (antibody) test which obviously (I thought it was but I was wrong) was not included in their previous results.
So … this new result tells me I’m POSITIVE for the serology test of XMRV.
I don’t know what to think at the moment. Going from “no, I don’t have it” to “I have it” … and at the moment not knowing what that really means as for being contageous, what treatment?; should I follow KDM’s suggested treatment seeing as not too much is known about a possible outcome …
Hello Els,
The good news is that a positive is positive. You have this retrovirus. So what to do next? I have the greatest respect for Dr. DeMeirleir and would certainly encourage you to follow his direction. Having said that you can go to Dr. Deckoff-Jones’ blog and read her experience and her daughter’s. Deckoff-Jones will be overseeing the clinic at Whittemore Peterson Institute, so her own experience should be invaluable as you try to figure out what to do.
Here is the link to her blog.
http://www.treatingxmrv.com
Paula Carnes
Paula, Can’t find the Reply button to your last comment:
R,
I just started reading Dr. Ritchie Shoemaker’s new book “Surviving Mold.” He has done a great job of describing his work and patients’ experience in a way the average person like me can understand. I hope to post a summary of the book here soon. Meanwhile, the book is well worth buying and reading.
I have questions. If we could reduce the viral load of XMRV would we then be better able to clear toxic mold? Do genetics control our ability to clear mold toxins? Is mold the big player on the board or is it the retrovirus?
My personal pet notion on this is to look at AIDS patients who have been exposed to mold toxins. Are they able to clear mold toxins?
Paula Carnes
*****************
There are HLA types associated with inability to clear biotoxins. I don’t know if these are potentially effected by retroviruses. I do think I remember reading a while back that the biotoxin pathway markers MSH and VIP can be effected by viruses.
My husband has one of Shoemaker’s HLA multisuseptable (dreaded) HLA types and has lyme and was exposed to the stachy. We don’t know if he has XMRV. He seems fine. So does XMRV play a role in allowing biotoxin illness, ability to clear toxins, effect the biotoxin pathway?
I had pesticide exposures as a child beyond the norm and defunct methyaltion. Could these also play a role in intiation of biotoxin illness, xmrv? I was home 24 hours a day much of the time and asleep in the bedroom adjacent to the bathroom where the stachy was found when my husband was not… stachy may sporulate at certain times of the day, and he may have not been as exposed as I was because of that.. I dont know. Do I have more life time accumulation of biotoxins?
Biotoxin illness effects innate immunity.. I am clueless at this point the role of biotoxin damaged immunity might play as well. The T-2 toxin I believe does effect immunity.
It seems pretty clear to me that the cytokine response from biotoxin damage can cause CFS (in some form) and can possibly initiate XMRV activity.
People exposed to mold can also be infested with fungus, which I think is another “living” biotoxin depending on type just as Shoemaker calls Lyme spiros. Form what I am gathering, environmental molds that can live at body temperature, can live in the body.
Mold Warriors might have info that Surviving Mold does not. I have not compared and have only skimmed through Surviving Mold.
Questions for me as well, and I would love to know how many people with CFS test positive for one of Shoemaker’s HLA types as well as XMRV.
It was one of those things where “You had to be there!”
Those who weren’t, cannot bring themselves to believe what we described.
They still can’t.
And with the exception of Dr Shoemaker, appearently have no intention of ever trying to understand what happened where those clusters were.
Hey Erik,
For now, all I can say is that the chapter you wrote in the new book is beautiful and expresses your amazing story well. I’ll comment more on the book after I finish studying it.
That chapter only really expresses my utter dismay at the strange behavior of the medical profession at claiming to be researching “CFS”, when all they really want to do is quibble over the DEFINITION or “description” of CFS… which we ALL know was a bad one.
No doctor or researcher has fully revisited the events and circumstances which occurred at north Lake Tahoe in 1985. How will they truly know if they have ever “solved CFS” if they make no effort to compare back against the mystery malady, which “CFS” was based on?
Dr Shoemaker has done an excellent job of discerning one incredible aspect of what happened, but he is working from afar, and can only do so much.
Really, you had to be there. It was absolutely mind boggling.
Paula,
You touched on many questions. Thanks for the informative summary. Hope you get definitive answers for yourself come June.
Best,
Maureen Goggins
Maureen, thanks for being a friend. I hope we will both have some answers soon. It’s been a long road.
Paula
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