posted
I know this virus has been spoken of a lot on this board over the past month but I did want to share my story with my doctor.
Yesterday, I went in for my appointment with Dr. S. in Houston. First thing she did upon arriving was hand me this article from the NIH in October: http://www.nih.gov/news/health/oct2009/nci-08.htm "Have you heard of this?" she said very excitedly.
I have been taking Valcyte for CMV, EBV, and HHV6 (all of which I'm IGG positive for and EBV of which I'm IGM positive for) and (because I did show great improvement last December and then got worse after being off the Valcyte for too long) she said that if XMRV does contribute to CFS and is my problem, then the Valcyte would only be supressing the retroviral infection (Valcyte did bring my HHV6 levels down but they only went up after I stopped.)
Dr. S. said that tests would be available in three months and that I should come back then to get tested. In the mean time, I'm to begin another Valcyte run and then, if I do test positive for XMRV in three months, switch to a retroviral treatment. She told me she's working with a network of doctors to develop a protocol to treat XMRV with HIV drugs.
So frankly I'm excited. After being treated with antibiotics for Lyme for two years, I'm ready to get rid of my final symptoms: fatigue & derealization.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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timaca
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posted
Good for you to have a doctor that is so proactive.
Also get tested for enterovirus...it can be part of the mix (it is for me). Use Arup lab. See: www.enterovirusfoundation.org for further info.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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seekhelp
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posted
What is so exciting if we have no idea if it causes symptoms?
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METALLlC BLUE
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posted
XMRV is a retrovirus that some preliminary research has linked to chronic fatigue syndrome. Researchers are also looking into possible links between XMRV and prostate cancer, as well as other conditions.
XMRV stands for:
* Xenotropic * Murine leukemia virus * Related * Virus
XMRV is only the third retrovirus to be discovered in humans.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Retrovirus Linked to Chronic Fatigue Syndrome XMRV Seen in 2/3 of CFS Patients; 10 Million in U.S. May Carry Virus By Daniel J. DeNoon WebMD Health News Reviewed by Louise Chang, MD
Oct. 8, 2009 - Some 10 million Americans may carry a recently discovered retrovirus now linked to chronic fatigue syndrome.
The virus, xenotropic murine leukemia virus-related virus or XMRV, was detected in 67% of 101 patients with chronic fatigue syndrome by Vincent C. Lombardi, PhD, of the Whittemore Peterson Institute in Reno, Nev., and colleagues.
The researchers also found the virus in nearly 4% of healthy comparison subjects -- suggesting that millions of Americans may carry the mysterious virus, which was first detected in prostate cancers.
"The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause and effect is established, there would be a new opportunity for prevention and treatment of these diseases," said Robert H. Silverman, PhD, of Cleveland Clinic's Lerner Research Institute, in a statement emailed to WebMD.
Silverman is on of the team of scientists that first discovered XMRV, and was among the researchers linking the virus to chronic fatigue syndrome and prostate cancer.
It's not yet proven that XMRV actually causes either chronic fatigue or prostate cancer.
In prostate cancer patients, the virus is seen in patients who carry a genetic mutation that disables a key virus-fighting immune response. But the virus is seen in chronic fatigue patients with and without this mutation.
Where did the virus come from? The virus is closely related to a retrovirus that's become part of the mouse genome. Oddly, XMRV cannot infect mouse cells -- but can easily infect human cells.
It's unlikely that so many humans have caught XMRV from mice. It's more likely that the virus is spread from human to human, but how that happens remains to be seen.
An editorial by John M. Coffin of Tufts University, Boston, and Jonathan P. Stoye of the Institute for Medical Research, London, accompanies the Lombardi report in the current issue of the online journal Sciencexpress.
Coffin and Stoye note that if 4% of healthy people truly do carry XMRV, it means that the virus is astonishingly widespread.
"If these figures are borne out in larger studies, it would mean that perhaps 10 million people in the United States and hundreds of millions worldwide are infected with a virus whose pathogenic potential for humans is still unknown," they write.
What is known is that viruses closely related to XMRV do cause many different diseases -- including cancer -- in other warm-blooded animals.
"Further study may reveal XMRV as a cause of more than one well-known 'old disease,' with potentially important implications for diagnosis, prevention, and therapy," Coffin and Stoye suggest.
WEBMD.COM
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote:Originally posted by seekhelp: What is so exciting if we have no idea if it causes symptoms?
Well, in science, a hypothesis is usually formed before a cause & effect is discovered. In this case, we have a hypothesis formed by correlative evidence. This is exciting because, in the modern medical community, correlative evidence is often enough, depending on the situation, to begin various forms of treatment. There are many ailments today that people are treated for without any cause & effect evidence. If you only want to get excited about cause & effect cases, you wouldn't be excited over millions of people getting healthy post treatment over the years.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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ping
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posted
StephenC - I am familiar with the doc you're seeing and very interested in the treatment possiblies she comes up with. Although I'm no longer in tx for Lyme, I do have fatigue issues and would love to get it resolved, even a 50% improvement would be wonderful!
Please keep us informed and thanks for posting this!
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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I also see Dr. S. in Houston for CFS, and will meet with her next week when we are there for Thanksgiving. XMRV treatment with HIV drugs should be right up her alley, since she has a broad range of experience treating CFS and AIDS.
I was recently diagnosed with equivocal babesia and possible lyme by 31 epitope through Igenex, although I am still skeptical of the diagnosis since I have so many viral and bacterial co-factors that could alter the results.
I am wondering why she said you would have to wait for three months for testing, since Vipdx is testing now (although there is a long wait). It's probably a foregone conclusion that those of us with CFS most likely have the XMRV virus.
I assume Dr. S. did not treat lyme, is that correct? Do you feel that lyme was the underlying cause of your CFS symptoms, or just a contributor along with the viral component?
Congrats on beating the lyme bug...hope you can do the same with CFS.
nancy
Posts: 964 | From san diego | Registered: Oct 2009
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randibear
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posted
so what's the treatment? please for laymen...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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ping
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posted
randibear is here! That's my girl!
The tx is similar to HIV tx. I don't know exactly what's being used now, but used to be a variety of anti-virals, acyclovir (sp.) and others. I'm way behind the times on HIV stuff.
TTT for more knowledgeable people to answer.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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quote:Originally posted by nspiker: I also see Dr. S. in Houston for CFS, and will meet with her next week when we are there for Thanksgiving.
Fantastic!
quote:Originally posted by nspiker: I was recently diagnosed with equivocal babesia and possible lyme by 31 epitope through Igenex, although I am still skeptical of the diagnosis since I have so many viral and bacterial co-factors that could alter the results.
I'm sceptical of my Lyme diagnosis as well. I was diagnosed by Dr. D in MA and Dr. F in LA with negative tests. I had positive IGG bands but I can't remember which ones. I can't deny, however, that two years of antibiotic treatment helped me greatly. These final symptoms have improved with antivirals in the past so I'm hopeful, if they're XMRV induced, to rid of them in the near future.
quote:Originally posted by nspiker: I am wondering why she said you would have to wait for three months for testing, since Vipdx is testing now (although there is a long wait). It's probably a foregone conclusion that those of us with CFS most likely have the XMRV virus.
I'm suspecting it has something to do with accuracy however she didn't say that. I don't know. Personally, I have other things I want to accomplish before I start XMRV treatment (if I'm positive) so I don't mind the wait.
quote:Originally posted by nspiker: I assume Dr. S. did not treat lyme, is that correct? Do you feel that lyme was the underlying cause of your CFS symptoms, or just a contributor along with the viral component?
Yeah, Dr. S. has not treated me for Lyme disease. She has, however, supervised Dr. F.'s (of LA) treatment of my Lyme and has treated my viral component. I actually don't think she treats Lyme any more unless you have a positive blood test.
quote:Originally posted by nspiker: Congrats on beating the lyme bug...hope you can do the same with CFS.
Thanks! I'm fairly certain my Lyme has been significantly suppressed to the point where I experience little to no symptoms. This is assuming that my remaining issues are viral, or, due to co-infections.
Good luck with your appointment next week! PM me, please, and let me know what she says!
Take care,
Stephen
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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Hoosiers51
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posted
I'm very interested in this as well, so please keep us posted!
Even if you suddently get better, and are too busy having fun with all your extra energy to post here....please try to make the time so we'll know!
But anyways....is the HIV viral protocol supposed to be pretty intense, in terms of side effects? I think I might have heard that before.
And I wonder how long it would take until one started feeling better, if the treatment does turn out to be effective? Would it be a long haul?
You might not know these answers now....just kind of throwing them out there.
Posts: 4590 | From Midwest | Registered: Jun 2008
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sparkle7
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posted
Just a thought -
Wouldn't taking an anti-viral possibly give you a skewed result with the XMRV test?
I heard that the tests from other companies may not be as good as the test being developed by the Whittemore Peterson Institute. They discovered XMRV. That's why there's a wait (see below).
It's probably better to wait & get the test from WPI when it's ready.
The WPI has developed a blood test for the detection of XMRV and we are currently negotiating an agreement with a clinical laboratory to allow for limited testing.
These services will be made available as soon as possible and we will provide information on this site as to how the test can be requested.
We cannot offer individual testing and results from our research lab. Please check back here for updates.
---------
Also- ever think about stem cell therapy rather than retro-virals? I heard the drugs have alot of side effects.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by METALLlC BLUE: It's not yet proven that XMRV actually causes either chronic fatigue or prostate cancer.
Uhhhh, might we want to "hold our horses" on this?
The medical community used to think EBV caused CFS too, and that was proved wrong.
Posts: 872 | From New York City | Registered: Jun 2008
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sparkle7
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Yes - we don't know for sure about this XMRV. Seems like it's best to wait & see how things develop. It is major news, though.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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METALLlC BLUE
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posted
quote: Uhhhh, might we want to "hold our horses" on this?
The medical community used to think EBV caused CFS too, and that was proved wrong.
I probably wouldn't wait if it were me.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Would someone please send me the contact info for Dr S in Houston. While my kids have Lyme Babesia & Bartonella.... I only have a diagnosis of CFIDS --- for the past 18 years. I am having a flare-up of symptoms recently --- this would be a great time to get a doctor for myself here in TX
Posts: 758 | From now TX | Registered: Mar 2001
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quote:Originally posted by StephenC: (...) She told me she's working with a network of doctors to develop a protocol to treat XMRV with HIV drugs.
So frankly I'm excited. After being treated with antibiotics for Lyme for two years, I'm ready to get rid of my final symptoms: fatigue & derealization.
I am in the same boat as you Stephen: I have derealization, and some other symptoms, and I have been on abx for years. I suspect that the remaining symptoms are caused by a virus. And XMRV is the most likely candiate.
Could you send me a PM with the name of your doc?
Thanks.
Posts: 275 | From Home | Registered: May 2007
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Pinelady
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-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
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ago, a flu shot at work. Got sick with the flu and
have not had any since. As for the other possibles, UP.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sparkle7
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posted
Interesting links, Pinelady... Seems like the same old, same old to me.
It really doesn't help us in regards to treatment, though.
I was wondering why they were so hush, hush about the spread of this retrovirus. I wonder how far back it goes. Seems people were getting ill with CFS back in the mid 1980s.
It may also have to do with our own genetics & endogenous retroviruses. It's all pretty creepy stuff once you start to research it. It complicated reading to study this but worth it.
I'm really more concerned with treatment at this time. What's done is done. I've been looking into the current protocols of CFS researchers.
I really didn't want to go there but that may be the cause of many of our illnesses. I was really dreading revisiting CFS. What some of us are going through may be something to do with that more than Lyme (in some cases).
I don't know which is worse - spirochetes or XMRV. Some of us may have both...
In my mind, stem cell therapy may be the best choice. I don't know if I could afford it. I'm going to wait & see what develops. There are some good protocols out there with supplements & a few drugs.
Here's an overview some some comparisons of current potential protocols for CFS -
The XMRV discovery may change the way people treat CFS in the future.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Pinelady
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posted
There may be some protection from antibodies from
mother to child, so in that requard I would like to
know where it comes from. To prevent it now. It may
be too late for some but not for the children if
they can figure that out.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sparkle7
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posted
If it's a retrovirus - it may be passed on genetically...
I don't really know enough about all of this. It's pretty complicated reading about exogenous & endogenous retroviruses... You really need to be studying for a PhD to understand everything.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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cottonbrain
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posted
Who on this board sees Dr J, formerly of NC, then SC, and now moving to DC? the one in UOS.
He could be an important source of info because prior to becoming an LLMD he served patients with HIV and AIDS; I understood he did quite a bit of work in that arena.
I know that his office is in a state of transition yet again, and he is experiencing his own serious problems with his family's health, but at some point he may be a good resource to learn about tx options.
Does anyone see him? know his opinion?
Posts: 1173 | From USA | Registered: Nov 2007
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posted
I was dxd with CFIDS many years ago. When the IV antibiotics I took for septicemia worked so well for the CFIDS we were all amazed. When I went downhill again these past years, we got the PCR positive test for Lyme and went to an LLMD.
The Bicillin shots seem to help most everything except the fatigue. My pain doc has been giving me Amantadine. She said it was an antiviral and could help with energy.
Is anyone else taking it? Does it help? I guess I'll get tested for XMRV, too. This is all so confusing!!!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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D Bergy
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posted
If you have the virus and Rife Machine you can try to disable the XMRV virus with little risk, other than it may not work.
There are frequencies calculated to damage the virus. I have used them, but I do not know if I had the virus or if the frequencies disabled it, if I did. All I have are the effects of the treatment, which was itching, sore intestines the first time, with the soreness decreasing with each treatment. No more itching after the first treatment.
My intestinal tract also started processing faster than normal, and still does two weeks after treatment.
My son had similar reactions with his first and only treatment.
My wife had no initial reaction to the treatment, but she did develop Shingles later on. I am not sure if it was activated by the treatment or if it was coincidence. She has Lyme disease.
Just another option for those who like to experiment.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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sparkle7
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posted
I heard about Dr. J... Don't know if he would have any comments on this XMRV.
I was doing a bit of research on it. I found this which may be of use:
I'm not into drugs as a solution (in general). I'd rather look into more alternative approaches. I don't hate drugs, I just prefer something with less side effects.
PS - Thanks Dan... Another reason to get a Rife machine. I was looking into seeing the famous CFS Dr. C but he charges around $7000 for the first visit! Ouch... I don't think that includes tests, either...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Pinelady
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posted
Yes they have found if treated it will reduce fetal transmission in at least 80% and they are thinking the same thing could work for this.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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seekhelp
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posted
$7k for the first visit? Exactly who does he care about helping? I guess LLMD bills aren't so bad. That is insane.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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D Bergy
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posted
Even lawyers would be envious of that consultation rate. Yikes.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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seekhelp
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posted
Maybe even drug dealers!
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sparkle7
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posted
You can subscribe to his website for $49 a month...
He may know alot but there's other research out there which could be helpful. I don't think any one doctor has all the answers for everyone.
I was looking into some of his research that I could find here & there on the web. I'm not sure I agree with all of his concepts of healing. He has something he's recommending using a kind of modified Live Cell Therapy. I'm a bit put off about that.
It uses animal products like liver & heart extracts mixed into a cream you apply. I don't know if I care for that sort of approach. He combines it with stem cell therapy.
I'm sure he has plenty of good ideas. It's just $7000 is a bit much. I learned alot just reading what was available about his protocols on the net. May be worth the $50 to look at the subscription only website?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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quote:Originally posted by cottonbrain: Who on this board sees Dr J, formerly of NC, then SC, and now moving to DC? the one in UOS.
He could be an important source of info because prior to becoming an LLMD he served patients with HIV and AIDS; I understood he did quite a bit of work in that arena.
I know that his office is in a state of transition yet again, and he is experiencing his own serious problems with his family's health, but at some point he may be a good resource to learn about tx options.
Does anyone see him? know his opinion?
Good observations. I'd appreciate it if you'd contact him, and point out this possible connection. Hear if he has any thoughts. I think he could play a key role in this. Having an interest in Lyme patients. And as you point out, experience with HIV...
Posts: 275 | From Home | Registered: May 2007
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sparkle7
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posted
Re: Dr. J-
From his website...
Starting this month, October 2009, the clinic begins transitioning its base of operations from Fort Mill, South Carolina, to Washington, D.C.
Dr. J's five-year-old daughter, Jordan, was recently diagnosed with an aggressive Leukemia (AML), and his wife, Kay, was diagnosed with breast cancer.
---
Seems like he has his hands full at the moment...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
> I have DR and fatigue as well, not sure if its viral or not.
One thing I don't think I've said on here is that six months of Valcyte did help my DR about 50%, but it all came back once I stopped using Valcyte. Dr. S. says that if I do have XMRV causing DR, a drug like Valcyte would only serve to suppress it and not destroy it. I will certainly keep everyone updated.
Best of health,
Stephen
PS: How long have you had your DR and Fatigue? Do you have any positive tests for anything?
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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djf2005
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posted
I have had DR, fatigue, and a slew of other symptoms since my acute onset 3 yrs ago.
I was able to get all the sx to about 70% better, but relapsed.
I have + testing for CMV, myco, CPN, Lyme (igenex), and a slew of other things. Some IGG, some IGM, very difficult to tell what is causing what.
I am getting a new panel run soon of everything. I will come back and post where my titers are hopefully next week if I can get to the lab.
I never was on valcyte or valtrex, although I mentioned it numerous times to my Drs.
I also question the lyme dx as well, but know deep down that's a big part of this.
It's so many things, and I wish it wasnt known as "lyme" to you, I, and the public but it is.
Maybe this whole XMRV thing will prove to be a breakthrough. I hope so, but I doubt it.
The remaining fatigue and DR are most likely lingering from whatever was contributing to your entire symptom picture all along.
I know even when I was 70%, I still had some DR and fatigue, I just pushed through and ignored it.
Hope your symptoms alleviate soon.
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Did your DR come on suddenly (mine came overnight) or gradually over time? My DR came first and then the fatigue gradually. I got sick in July 2006.
So what medicines did you take to reach 70% better? Was your DR much improved by what you took?
I've tested positive HHV6, CMV, and EBV by Labcorp(both IgG and IgM on the EBV,)I had an Indicative result for Mycoplasma by Labcorp, and I received a 41+ and a 56+++ on the IGG and a 41 IND and 31 IND on the IgM for the Igenex Lyme disease test (negative.)
Everything else I've been tested for I've been negative.
Antibiotics for two years helped my wide variety for symptoms a lot, but, like you, I have lingering DR & fatigue; I suspect it to be viral. I'll see if XMRV soon provides any answers!
Stephen
PS: This morning I found parasites in my stool (see thread: http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88955) after taking Humaworm as recommended by MetallicBlue of this forum. I have no idea if those creatures are contributing to my DR and Fatigue. I'm 10 days into the 30 day treatment.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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Hoosiers51
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posted
Derek and Stephen,
Have you guys tried Bactrim DS for the derealization?
I also had a sudden onset of illness (literally overnight).
Just 6-8 weeks of Bactrim DS (the important part) with Azithromycin really helped my cognitive function. Also helped that foggy, zoned out, "I'm not living in my own head" feeling...which I think is derealization, but maybe I don't understand the definition.
When I stopped Bactrim, it did get worse, so I went back on it. I am currently on Bactrim DS with Clinda/Quinine and Bicillin, and one day I realized that I basically feel like I'm living in my old body/head/mind again. Pretty much 100%.
The only catch is that when I'm tired (and my fatigue is SEVERE), the foggyness is there slightly.
But overall, I feel that Bactrim DS pretty much "cured" my "brain problems" which includes just feeling weird and like you're not all there.
I tested positive for Bartonella Henselae through Quest though, so I do know I have bartonella exposure.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I personally think there is alot of confusion out there about viruses and Lyme. Many patients think that because they have CMV, HHV-6, EBV that they may not really have Lyme because their lyme tests are equivocal or negative. This is just not the case. Most Lyme patients have these viruses (as does much of the population).
I personally did not test positive for Lyme, babs and bart until way into burrascano dosages of antibiotics. I was then highly positive. And most of my neuro symptoms are gone after bart treatment.
There are many on this board that get confused and jump from treatment to treatment without giving any of them a chance. Mistake IMHO.
I talked to my LLMD late last week about XMRV. It is way too early in the process to start talking anti-retrovirals. You do realize the side effects right? Much more toxic than antibiotics and THERE IS NO CURE.
I personally would wait until we have some real numbers of positives out there and A REAL TREATMENT before jumping into anti-retrovirals but that's just me.
Posts: 770 | From USA | Registered: Jul 2006
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Have you guys tried Bactrim DS for the derealization?
I received 14 days of "Bactrim 160/800mg" from a friend. I took one of those pills twice a day. I had daily headaches while on the bactrim and experienced twitching-like sensations. When my 14 days ended, the headaches and twitching ended. I don't know if those were side effects of the drug or if I was reacting in a good herx-like way.
Maybe more bactrim would be beneficial but for the past year or so I haven't had access to a Dr. who will give me antibiotics. I will need to find some bactrim elsewhere. I have used 2 years of antibiotics therapy in past however (mainly tetracycline.)
quote:Originally posted by Hoosiers51:
that foggy, zoned out, "I'm not living in my own head" feeling...which I think is derealization, but maybe I don't understand the definition.
Yeah, that's exactly how I feel, every day of my life since July 2006.
quote:Originally posted by Hoosiers51:The only catch is that when I'm tired (and my fatigue is SEVERE), the foggyness is there slightly.
Before I got sick in 2006, when I was really tired and had been awake for more than 24 hours (or during a hangover from alcohol) I would get derealization. These days I get plenty of sleep and don't use alcohol and still have plenty of fatigue and derealization.
quote:Originally posted by Hoosiers51: I tested positive for Bartonella Henselae through Quest though, so I do know I have bartonella exposure. [/QB]
I've heard of Bartonella causing derealization. I was tested for it through Labcorp and it was negative however.
BTW, did you get visual vertigo ever? Swirling like vision? Similar to when one is drunk?
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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quote:Originally posted by Myco: I personally think there is alot of confusion out there about viruses and Lyme. Many patients think that because they have CMV, HHV-6, EBV that they may not really have Lyme because their lyme tests are equivocal or negative. This is just not the case. Most Lyme patients have these viruses (as does much of the population).
I personally did not test positive for Lyme, babs and bart until way into burrascano dosages of antibiotics. I was then highly positive. And most of my neuro symptoms are gone after bart treatment.
There are many on this board that get confused and jump from treatment to treatment without giving any of them a chance. Mistake IMHO.
I talked to my LLMD late last week about XMRV. It is way too early in the process to start talking anti-retrovirals. You do realize the side effects right? Much more toxic than antibiotics and THERE IS NO CURE.
I personally would wait until we have some real numbers of positives out there and A REAL TREATMENT before jumping into anti-retrovirals but that's just me.
Personally, I don't want to continue waiting around watching my life go by.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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If you feel like Lyme treatment has helped, but you still have neuro and fatigue issues, why not treat for ALL co-infections? Tests, as you know are not reliable for ANY of these infections. If you are planning on taking antiretrovirals for life why not hit all the co-infections first and see if that works?
Did you treat for Bartonella or Babesia or even Lyme for any great length of time per Dr. B's guidlines?
As I mentioned, most lymies have all the viruses you mentioned and the jury is still out as to whether XMRV is a cofactor or not.
Many do get well here with the right LLMD.
Posts: 770 | From USA | Registered: Jul 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I don't get visual vertigo....but I did used to get something else weird having to do with eyesight...
When I would feel totally "out of it," I would get this thing where I would feel like my eyes weren't focusing well.
It wasn't like where your eyes "fall asleep" for a minute and things go blurry, it was different, and more constant. Like when I would be having a conversation with someone and they were looking me in the eyes, I would be worried my eyes were crossing inwards, because that is what it kind of felt like. Just like they weren't focusing. And it was related to the DR feeling.
But no double vision or swirls, just sort of a fuzzy-ness, but it was almost like I was perceiving the fuzzyness via my brain, not because my actual vision was off.
People who knew me really well and saw me often did say that sometimes my eyes would look "glazed over" like I was on drugs or something, and I think that those were the times I was experiencing that weird sensation where I felt like the eyes couldn't focus.
I'm sure I tested negative for bartonella henselae a few times, but one time I was lucky enough that it did come back positive on the IgG. Even though it was IgG, my LLMD considered that to be proof that I was exposed to it.
PS--now that I think about it, the eye symptoms might be described as feeling drunk, but nothing felt swirly or moving...just kind of "not right"
Posts: 4590 | From Midwest | Registered: Jun 2008
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If you feel like Lyme treatment has helped, but you still have neuro and fatigue issues, why not treat for ALL co-infections? Tests, as you know are not reliable for ANY of these infections. If you are planning on taking antiretrovirals for life why not hit all the co-infections first and see if that works?
Did you treat for Bartonella or Babesia or even Lyme for any great length of time per Dr. B's guidlines?
As I mentioned, most lymies have all the viruses you mentioned and the jury is still out as to whether XMRV is a cofactor or not.
Many do get well here with the right LLMD.
I've treated for Bartonella with 2 months of levaquin and 1 month of Cipro. Nothing.
I don't have symptoms of Babesia.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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quote:Originally posted by Hoosiers51: When I would feel totally "out of it," I would get this thing where I would feel like my eyes weren't focusing well... I would be worried my eyes were crossing inwards
Yeah, I have that.
quote:Originally posted by Hoosiers51: But no double vision or swirls, just sort of a fuzzy-ness, but it was almost like I was perceiving the fuzzyness via my brain, not because my actual vision was off.
Visual snow? That's something I experience.
quote:Originally posted by Hoosiers51: People who knew me really well and saw me often did say that sometimes my eyes would look "glazed over" like I was on drugs or something, and I think that those were the times I was experiencing that weird sensation where I felt like the eyes couldn't focus.
People have said the same thing to me! I think in the near future I'll perform a Bactrim run; I'll find a way to get the stuff. Thanks!
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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Try Rifampin and Zith combo for Bartonella. That's what cleared my head up and also helped alot of people on this board.
Posts: 770 | From USA | Registered: Jul 2006
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posted
I have an apt. with the same doctor on Thursday. I'll ask about what type of tests she's waiting on. Anyone else want her opinion on something?
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I think I was on Zithromax with Bactrim DS, when it was working really well for me.
Didn't get "visual snow"...it was moreso just the feeling like your eyes are crossing, and that makes things not really come into focus well. Though keep in mind my eyes weren't literally crossed, just felt like it.
Another thing that helped my brain was Zithromax with Plaquenil. Plaquenil helps Zithromax penetrate better. There is a study on that, I can pull it up if you'd like. Or you could search "hydroxycholoroquine macrolide" on this site.
The Zith/Plaq helped my psych symptoms (get agitated easily, fly off handle at people, irrational thinking, neediness). But I think it's worth a try for people with suspected Bart even if they don't have those exact psych symptoms.
The Bactrim DS/Zith is what helped my brain fog, DR type stuff. I think Bactrim was the main player in the progress, but I felt I should mention I was on Zith with it too, in case you have the opportunity to add that one as well.
The combo might be more effective than just Bactrim DS. But if Bactrim DS is all you can get a hold of, better than nothing, for sure.
Right now I'm on Bactrim DS with Clindamycin (which is kinda sorta similar), and the Bactrim still seems helpful, but I do think the Zithromax gave the Bactrim more of an effective edge.
Also, just because this worked for me, doesn't mean it'll work for you. BUT, I think it's worth a shot. If I would have only tried Rifampin, I would have missed out on a lot, so in my case, the experimentation was worth it. Likewise, there may be something else not mentioned here that is the "right" drug for you.
Honestly, I would try both combos at some point...Zith/Bactrim and Zith/Plaquenil.
I would have never believed the brain fog/DR could go away until I stumbled upon something that actually worked for me. Then I was like, "Holy crap, it was a bacteria the whole time."
For me, Zith alone was not effective.
Also, I didn't have success with Rifampin. Haven't tried Levaquin yet but plan to eventually. Cipro didn't help much if at all.
Another thing to keep in mind is that if you're dealing with actual Bartonella and not BLO, you should see progress within 2-3 weeks, 6 weeks max, because the reproductive cycle is fast. Can't comment on BLO, that's a different ballgame.
I get the sense that Levaquin and Rifampin treat BLO, and that Zith, Bactrim, etc treat actual Bartonella (the kind that has been studied for awhile...cat scratch fever....also now known to be tick born). That is based on reading Dr. B's guidelines, Wikipedia, and my own experience.
This is all stuff I just typed on someone else's Bartonella post, but I figured I'd repeat it here.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
ps--just saw you said you treated "bartonella" with rifampin and cipro. Haha...read my above post carefully in that case, especially the last 1/3. I tried both of those before I found something that actually worked, so don't loose hope.
You may actually have Bartonella and not BLO, and that's why those meds didn't help you.
If you are interested in herbal tinctures, I also herxed like heck right away on a tincture called "BLT" that is for Bart and Lyme, all herbal. PM me if you want the number of the doctor that makes it. Lots of West Coast Lyme patients take it.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Some people who have been tested have posted here: http://forums.aboutmecfs.org/forumdisplay.php?f=57 at least one with chronic lyme. She has been to a LLMD and been treated for lyme for a long time but it did not help.
Could be XMRV lowers immune system so it does not control the lyme despite antibiotics. There is some speculation about such a thing.
Posts: 366 | From Europe | Registered: Nov 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by StephenC: I have an apt. with the same doctor on Thursday. I'll ask about what type of tests she's waiting on. Anyone else want her opinion on something?
Hi Stephen,
I have an appt. in mid-Jan and would like to be prepared, esp. on the thyroid issue. Knowing Armour Thy. is no longer an option and finding that Naturethroid and Westhroid are also in that same catagory, what is your docs take on the best course of action?
I really need the thyroid meds and want to avoid synthetics if I can. Any suggestions of what I can research / do before my appt.?
Much thanks to you in advance.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm not sure why everyone is having such a tough time getting the Amour Thyroid. Walgreens has been filling it for me this entire year, including this month.
Very strange.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I saw Dr. S. again today. I think she's waiting on an NIH endorsed test; something that will be available in Feb. or Mar. of next year. I'm going to wait until then to get tested.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Seek, 60mg
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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