Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

[Wayne]

Thanks Jam338 for your lengthy, informative and insightful post. Good to see you posting; I know it probably took a lot for you to make the effort.

All the Best, Wayne :Retro smile:

 

[jenbooks]

Thanks, Jam. When someone starts charging that kind of $$, I begin to doubt their sincerity. They are "growing" the business, eh? That kind of $$ could have afforded you stem cell treatment in Panama!

 

[SpecialK82]

{{{jam}}} it's so good to see you posting, I remember you from Prohealth awhile back, and always appreciated your thoughts.

Thanks for the info about GMA it's good to know what the doctors and staff are about first hand.

If they do infusions there, I wonder if they would be interested in getting involved with the next Ampligen trial. Hemispherx needs to study 300 patients (per the FDA), the more study sites that are available, the faster this trial will go and the faster they can submit the data for FDA approval. I will metion this to Hemispherx if I can get them on the phone.

Take care of yourself, sorry to hear that you aren't much improved.

Kristina

 

[Forebearance]

I agree that it's nice to see you posting, jam338! I'm so glad you're still online. I'm also sorry to hear that you aren't feeling better. I totally agree with your review of GMA. Dr. Gordon tried several things on me, but by the time I had seen him I had already tried most of the possible CFS treatments available through doctors that seemed appropriate for me, and we just ran out of things to try.

I've heard a report from the talk by Mrs. Whittemore and Dr. Mikovits. The only new info I could pick up from my reporters (who were overwhelmed by the technical stuff) was that the WPI will have a new and improved research test for XMRV up and running by June, and that Dr. Deckoff-Jones is going to be working with the WPI in some way.

 

[jam338]

Hi Wayne, Jen, SpecialK, Forebearance

Wow, feels like reunion! It's so nice to see y'all!! HopeI didn't leave anyone's name out, if so sorry, please forgive. My brain is scrambled by this point in this illness.

Yes it is very hard for me to post these days which is why I am not around much. I try to read and stay current, but navigating this website (as wonderful as it is) is cognitively difficult for me. I am still hanging in. Very tough. Still bedridden. Can no longer make it out regularly to appts. I am truly stumped about what to try next. I really think I need to try to work on treating secondary infections to knock those down as best I can.

I am one of the presumed "negatives" for XMRV in the trial but I am hearing through the grapevine that the blood draws may have been compromised and weren't ever processed by WPI. If so, understandable to protect the study. We will likely never know. The odd letter I received seemed worded so vague...mentioning negative yet then suggesting WPI may still be working on testing with it.

I need to reread it when my brain is more clear. It was a bad week for so many things. I am having to decide about what to do about my picc line. Think I have decided to have it removed on Friday. It has been in there for a year. Some say it can stay in as long as 4-5 yrs. I know someone online who says they have a friend who has had one for 8 yrs. But, the oncology center (where I have to get the weekly dressing changes) says for legal reasons they can't maintain it for me for more than a year. I am not able to maintain it myself. All options are out with help because of the controversy about risks of having it. Home nursing in my area will only do it if they are fully administering the treatment and the care, and they don't administer for anything controversial outside of provisional standards of care.

Its a stressful decision to make. I am so sick. Treatment not completed. Still displaced from my home. Not functionally care independent. Stress beyond belief. Things are a mess. Trying to get to the oncology center weekly for the mandatory dressing changes is more than I can physically manage. The oncology center says they will maintain the line if I get it reinstalled into the arm, but adapting to a new installation is very difficult. It would go into my right arm, my dominant arm, and I would lose use of that arm until past the rejection/acceptance period which for my body was about 2 months on the last line. Until we are back in our house again I just don't see it happening. Am afraid to do anything more that might tank me where I am not able to get back to my house when it is done.

My next step alternative, I think, is going to be trying NutraMedix AntiMicrobials for a while for interim treatment. I read on Lee Cowden, MD's facebook that he feels there are 4-5 different ones that test well for XMRV, Lyme, EBV...pretty much all the infections we are subject to plus yeast, mold, and parasites. Can't remember the names but will retrieve them from my notes and post for y'all. For those not familiar with Cowden, he is a cardiologist in Texas who is integrative medicine and known as an LLMD. He seems wicked smart. You can post on his FB page and ask questions. He generously shares his time to help patients like us. I think he is pretty much into teaching what he has learned and to create his legacy to medicine and chronic illness.

The good news is that my CD57 has come up from a 2 to 82 which is unbelievable as I had been told that patients below 40 don't usually respond well to treatment and that things looked pretty bad for me. My C4a was over 9800 and down to about 6200 so some improvement there. Still feel extremely toxic but have less days that I feel like I am dieing now.

I got a used Bemer3000Plus and think that has likely helped some too. Plus using an infrared mat with EMF protection on bed. It helps some with pain...more on cold days though....I think the heat from it keeps my muscles from spasming. Not sure if it is truly functioning more than a body size heating pad. It is a VitaMat, recommended by Dr.Klinghardt.

Yes you are right for what I have spent on treatment, could have gone for stemcell. But, wasn't possible. I am too weak to travel for one thing. And, was evaluated for it where GMA told me I am too sick and too high risk right now. Several GMA patients received stemcell (not in Panama) and some got worse. So, until the bugs are worked out of the process I was told I am not a candidate for it yet.

Not sure how the Cheney patients are doing with it. I emailed with Carol Sieverling, long time Cheney patient, and she went for it and was really struggling when I last emailed with her ...months ago. She was told there would be a down time with it. Hope she is through that phase.

The cost of my treatments at GMA were very high due to IV treatments..so yes there is an IV room there. They are very patient oriented so the IV room has several full size recliners with pillows and blankets for patient comfort. They even provide healthy snack crackers for those with long IVs. The nurses in the IV room are wonderful.

My interim treatment since then has been the Patricia Kane IV PK Protocol for Neuroimmune illnesses. It helped substantially with light and sound sensitivity, but nothing for fatigue, pain, or cognitive issues though it is supposed to work for that too. Didn't happen for me. There is an oral tablet version of it available online through BodyBio.com, including her book The DETOXX BOOK. Get the doctor version as the patient version is mostly recipes with some treatment summary info. I actually bought both.

The light and sound sensitivy improvement was huge for me. I had to wear sunglasses and earplugs in my house and was is tears in doctors offices with the flourscent lights. They had to turn them off. Transporting me anywhere is a nightmare. We had to get a minivan so I can lay in the back on memory foam pillows. The road vibration sets off my neurological issues.

Still EMF sensitive where talking on the phone is a challenge but can do it for short times now if I use the landline phone.

Oh also, have been doing Asyra testing scans....very interesting process....also an EIS scan (electrical interstitial scan).....similar to Zyto scans .....the new Startrekky scans to measure energy resonance with your organ functionng. Have been comparing it to blood lab results...seems consistent. Much information demonstrated extensively on youtube for those interested in learning more.

Also trying something new ....a last ditch thing that I am not quite ready to talk about unless I see results with it. Very woo~woo so science based folks won't be interested in it all. I am on last legs here......I would try the eye of newt if I thought it would help get me independently functional again.

What else....wanting try photon therapy and maybe some frequency treatment. GMA has forms of that equipment but tries to stay on the downlow about those as they are perceived as a bit woo~woo. But, hey heart and brain scans are measuring energy resonances so why not have applicable evaluations for other body functions?? It exists. It came out of the NASA space program. Had to ....they don't have Quest lab courier service up there

Well that is my update. Sorry to derail the thread a bit.

But back to XMRV....I will post the Cowden text on what he thinks XMRV will be responsive to. Worth a try. I don't know how we will measure success though when they can't accurately measure it.

Fondly,
JAM

 

[Navid]

hi jam:

i had a picc line successfully w/no complications for 2+ years; Coram (in the bay area) Healthcare sent a nurse to my house each week to clean and change dressing. it was covered by my insurance thru a Lyme diagnosis.

why don't u ask gordon to prescribe to RAL (sp)...the anti-retroviral that has been shown to be effective against all herpes viruses w/less side effects than other AV's. (google RAL Barcelona 9/23 for report)

also the B12 protocol laid out by velha on this site (search for velha and b12)...will lift methylation block and increase glutathione. when we are so very sick...we cannot tolerate glutathione administered directly....so if that is part of your gma iv's, u should remove the glut.

if u have questions abt my insurance and home health care pm me.

thanks and good luck

 

[jenbooks]

Hi Jam. I personally think supportive therapy rather than killing therapy helps when you're that reactive. PK therapy is supportive by helping restore the cell membrane integrity, for instance.

I wish you only the best and am glad you have compassionate care.

 

[Cort]

I am among the GMA study group. No results for one year, then suddenly 1 wk before Mikovits presentation a flurry of us received "negative" results, but we're still testing (??) Confusing. More confusing is that the original Mikovits research showed findings of 67% to 95% positive in WPI cohorts. Yet the majority of GMA cohorts are apparently negative (???) If true, then this clearly suggests XMRV is not a primary factor in this illness. Or, something odd happened with the GMA cohorts (???) re compromised samples misplaced as some have suggested.

I agree with what other GMA patients have posted. They are trying, but don't have all the answers so please don't assume they do. I have paid over $15,000 there and am still bedridden and very sick. Heartbreaking as I too really thought they were most likely to have answers. They may have more than many, but don't have it all. It is a very complex illness as we all know. That said, they did know to have infected root canals checked out. Unknowing to me I had 2 very severely infected root canals...an additional burden on the immune system. Treatment is very expensive. I hear prices are steadily going up. They do not take any insurance or Medicare. In all fairness, I am sure there must be some success stories among their patients, but in all honesty I personally don't know of any who are well. Have met many patients there through the years. The one thing we all have in common is that we are very sick, and we love the doctors and staff there.....very compassionate care.....IV room nurses are outstanding......but recoveries, not so much.

Many patients feel a bit guinea-pig with trials of this and that with costly treatments. But, that is the only way with this illness to find what combination of things might give relief. Treatment seems pretty much focused on finding relief and hopes of finding a cause.

FIrst appts are typically somewhere around $900 now from what I hear. I know mine was over $900. Followups are around $300...frequently as high as $400 - $500 after the trial things are added to bill. They do provide Super Bill Invoice for submission to your insurance if you have out of network coverage. They have an in-office IV room as well lab draw room. Offer many complimentary alternative services along with integrative M.D.s. Lots of staff changes this past year while growing their organization. Resulted in a bit of office functional transitional chaos which will settle over time.

Oh, they also do phone consults, but rates are the same as office visits. Office visits are categorized as brief, general, extended fee scale. Since the growth expansion everyone I know says all of their appts are pretty much charged at the highest extended visit scale....even phone consults. The last two phone consults felt a bit like "running the clock out" to ensure the higher rate. A bit frustrating. Not complaining. Am grateful for their dedicated services. Just making sure others know the cost factors before you sign up in the blind.

That said, you will definitely get care where they think outside of the box, care about their patients, try to accommodate special needs, and they have a comprehensive depth of understanding about the limitations and challenges with this illness. Amd, you can email your doctor. For service and compassion they get A+.

However, they are wired in with CFS and lyme docs across the country...as evidenced by the Mikovits presentation. If a breakthrough happens, GMA will be among (if not THE) leader on the west coast in CA.

Thanks for the review. Its a crying shame this is all so expensive....How long are the first appointments? I hope they are a couple of hours????

What is the picc line for?

Good luck with everything!

 

[acer2000]

So did they ever post the video? Did I miss it?

 

[jam338]

...sorry for the delayed reply....i tanked.

Cort, my first appt was lasted a very long time, can't remember for sure now but something like 3 hrs or so, maybe longer. I have to say this was the first and ONLY time I have ever seen any doctor who REALLY looked at prior labs. It was a bit easier since I have all prior labs (last 2 yrs) organized in a binder. More for me, than them. With my cognitive issues I can't remember details of prior labs so having that binder with me helps immensely and has been key in some appts. Doctors tend to use my binder for lab reference rather than their own records which are usually not well maintained though GMA does a better job than most doctors with that. They don't cheap out on not hiring sufficient staff like some doc offices do. There are extremely well trained staff support at their office who have worked there for many years.

The treatment I did there was IV Rocephin for lyme disease and also hybrid version of PK Protocol. I later (through another office) did the full PK IV Protocol using product imported from Switzerland. It was extremely expensive but helped a lot with light and sound sensitive. Helps to repair the mylin (sp?) sheath of nerves etc. Interestingly though my NK cell count doubled ...still low but higher. So, I think it does more than I realized. I plan to continue with the oral version of it (outlined in her book THE DETOXX BOOK, Patricia Kane) May eventually reinstall line and resume IV but my instinct tells me now is not the right time. My body needs a break. My husband needs a break. Our life needs to stabilize more before I can resume risks (for me) of piccline IV administration. Husband does not have the focus needed right now to administer it. He is in caregiver distress right now. No one to help him so I can do is remove the line to give him a sense of being relieved of it until it seems like he can handle it again, if ever.

On video, I keep reading a link to it will be posted on GMA website as well as WPI website when available. Haven't checked since i tanked. Hope it is up soon. Inquiring minds are ready to learn more.

I have been in touch with researcher from GMA and who has written to me explaining further why they theorize that some patients are "current" negative on XMRV, but not deemed "conclusive" negative. Many receiving negative notices are presuming it means conclusive negative---it does not. They are still testing all samples to ferret out more. I was told by this person that XMRV is like lyme, it does not habitat in the blood. It resides in tissue, so (as with lyme) there are many false negatives. The blood test is only a brief snapshot of what is happening in the blood that day of the test or that there were no traveller's in the blood vials drawn. Taken an hour later it could have a different result. I asked her permission to post the explanation she sent me in hopes it helps others better understand about how there can be so many negatives in the GMA cohort which at this time appears inconsistent with the WPI cohort(s) outcomes.

 

[jenbooks]

The controls are assumed negative. Anybody sick could be positive until further notice. Either the fault of testing, or there's another retrovirus lurking around. It can only be the retrovirus.

Not.

 

[jam338]

GMA Researcher's Response to How/Why The GMA Cohort had higher negative results.

Question sent to GMA regarding what appears to be (and may not be) a
possible disparity of high negative results among the GMA cohort. The general WPI cohort(s) have an apprx 2% negative (after refined testing that resulted in 98% positive). People are trying to reason out why that is. Many are interpreting the "negative" to mean "conclusive" negative. If so, then it suggests there must be something wrong with the GMA cohort sample and/or testing. The genesis of the math not working is fueling the concerns I think. Can you please help us better understand??

The following compilation post is from direct copy/paste of explanation email(s) sent to me by GMA researcher (posted with her approval to help others better understand):
__________________________________________________________________________

Yes, we do have more negatives than we expected. There are quite a few
reasons why I could imagine this.

1. We had an extremely mixed group. We were specifically asked to
provide people with diagnosis's OTHER than CFS. Technically, anyone
with a Lyme diagnosis does not have CFS. Neither does anyone with
any other diagnosed illness that can cause the fatigue and other
symptoms. So the cohort is not the same as in the Science paper. GMA
does not use the same means of diagnosing CFS as Cheney or Peterson,
and it was in their groups that the highest rates are found. I fit
Cheney's progression for CFS to a T, and I am positive. I don't know
if that makes a difference.

2. We also have a large number of controls. The control testing
seems fairly consistent, in that patients who test positive are more
likely to have family members test positive than those who tested
negative. However, it is not 100%. Also, other contact controls who
are not sick had a fairly high rate of infection. Still, they do not
have the rate expected in the ill.

3. Perhaps this area has a higher percentage of the P-variant. In
that case we would not have as many testing positive yet. Or maybe
this area simply doesn't have as high a rate of infection, period.
HTLV is found only in specific areas, with almost none in the US.
This is why we asked people where they live, now and previously. It
may turn out certain areas have higher rates of infection.

Nobody knows yet. Until all the samples have gone through all of the testing, we cannot compare it to the numbers from the Science study. Actually, we will never be able to,
as our cohort does not match.

Until controlled testing has happened in many arenas, we won't
really know what to expect. You can't compare apples and oranges. We
have to look at each group individually and see what there is to
learn. AGAIN, this is research. NOT a clinical test, where you know
what to expect, and can base your treatment on it. We don't know yet
why the numbers are lower, or if IF they will be lower when the
testing is complete.

Culturing the virus so that there is enough in a sample to find in
a test can take up to 45 days. Only 10 samples can be tested in a week.
THEN, after all of that, they have to sequence the gene to be sure which
virus it really is, and whether they may have found a new one in this
family. I don't even know how long that takes. All in all, a very long
(AND EXPENSIVE!) process. They are doing these tests over as they
identify new gene sequences, so any one person may have their sample
tested many times.

This science is still in its infancy. We have been trying to
communicate this all along, but it is a lot to take in. Right now, all a
negative says it that they were unable to find evidence of infection in
a certain sample. In the work being done to protect the blood supply,
labs are finding the samples drawn a week apart may not test the same.
Even people who tested positive at 4 separate labs, may not test
positive in the next sample drawn. It is very challenging working in
this field right now.

All the tests for XMRV and the variants are still being developed. There
is no perfect test. If you have a culture test that is positive, then
you can be sure you are positive. If you have any test that is negative,
all you can be sure of is that they didn't find XMRV in that sample.
There are a lot of possibilities. So, yes, you are a "current" negative,
not a "conclusive" negative. And even that, only for XMRV specifically.

REGARDING MY SPECIFIC NEGATIVE RESULT SHE SAID:

There are a lot of possibilities why you could be testing negative, but
still be infected.

1. You may have XMRV, but it was not in the blood, only in tissue at the
time the blood was drawn.

2. You may have XMRV, but you cannot produce antibody to it, or were not
producing antibody at the time blood was drawn. This is seen to be true,
as many who test negative by serology are positive when the blood is
cultured for the virus. The virus seems to stay sequestered in tissue,
and if it is not active, then you may not produce antibody until the
virus is activated.

3. You may have XMRV but the antibody was all bound up in immune
complexes (antibody plus viral protein). Then the antibody is not able
to bind with the primers that show a positive by serology testing.

4. The level of virus in the blood may be too low to react with the
primers (this is why they culture the blood, to increase the amount of
virus, so it will show more readily. It just takes a long time, and they
can only do 10 samples per week.)

OR

You could have one of the variants, for which they have not yet
developed testing. In that case, none of the tests will show positive YET.

WPI is using the samples from the GMA study to develop new tests. When
they find something that is not XMRV, they sequence the gene to find
what it is, and be sure it is not a contaminant. Because no one knows
yet what viruses might be involved, or how many there might be, it is a
very slow process. I can't remember for sure, but I think they may have
9 variants by now.

Dr. Mikovits does not want anyone to be concerned they will not be
treated because the virus they are infected with was not found. That is
why she didn't want to tell people they were negative until she was
absolutely sure. We only sent the letter out before the talk because so
many people were worried their sample was lost, damaged, or that they
had otherwise not been included.

Everyone in the study is being very actively included, the samples are
safe, not lost, but the science and the testing is so new, it is hard to
be conclusive yet. I'm sorry it is confusing, it is hard to communicate
so much science in a simple manner.

Dr. Mikovits made what I felt was an important point in her talk on
Monday. Well, lots of important points, but this is particularly
relevant to Lyme patients.

Lyme patients appear to be present in high numbers in the XMRV positive
groups. In one study of 67 patients, every person infected with Lyme was
also XMRV positive. In the GMA study, so far, 50% of our XMRV positive
people are also positive for Lyme disease. We don't have our final
results yet, so that number may change, but it is still pretty high. We
are not finding every Lyme patient positive for XMRV, but as WPI tests
for the viral variants, that may change.

Dr. Mikovits feels that is is most likely that if you have Lyme AND
XMRV, you will need to treat both, just as they have found with HIV and
its coinfections. It is possible that XMRV requires a triggering
infection or immune insult to cause it to become active in the body, and
Borrelia burgdorferi and its companion tick borne infections would
easily work as that triggering force.

So, even if you know or suspect you may be XMRV positive, it is
important to continue to manage other infections or issues in the body.
Hopefully as treatments for XMRV become established, people who are
still not well will start to see more improvements. Even if you cannot
tolerate or do not improve with certain treatments, anything you can do
to reduce inflammation is expected to help keep the virus less active.
Also, it looks as though supporting methylation may help to control the
virus. Many people only think of methylatiion in regard to detox, but
methylation has many functions in the body, including control of virus,
and turning on and off various genes. If you have a hard time with the
methylation supplements, you may need to build up slowly, or experiment
to find other ways to support repair, but it is worth at least
considering as part of your treatment.

I'm waiting to hear that the video of the talk is edited and put up on
the GMA website. Here is hoping that it makes it soon!

REGARDING COMPARISON TO LYME:
We don't know if XMRV changes it's envelope like Borrelia does with
the outer surface proteins. Virus and bacteria don't work exactly the
same way. But XMRV is definitely proving to change its structure more
than initially assumed.
_____________________________________________________________________

They ask that we remember these tests are clinical research to help evolve a more reliable testing methodolgy. During the clinical research process there will be many false negatives. So those who have received negative notices are NOT conclusively negative....it is only interim "current" negative. When the final assay is developed it is expected that many of us will test positive and be consistent with the rest of WPI cohort group(s).

 

[jenbooks]

Thanks, Jam. So much is still unknown, even as to how virulent XMRV is, whether it's a passenger virus, etc.

 

[cigana]

Thanks for posting that Jam, very enlightening.

In the work being done to protect the blood supply,
labs are finding the samples drawn a week apart may not test the same.
.

So at least we know that in the blood supply work they are at least finding XMRV!