Just glad to see that someone is trying to figure this out. It does seem to be a mystery at this point to some degree.

Our llmd has found that many lyme patients also have mycoplasma, which he said was similar to a virus in some way if I'm not mistaken.

You might be on to something. So much is unknown.

I am wondering if somehow a combination of strains is what has done me in, so to speak. Maybe a certain combination of 2 or more strains is the culprit. Perhaps one plays on the other. Perhaps I seem to get one in control which allows the other to come out. Maybe different drugs work on different strains, and I just cannot take all of them at the same time. And certainly would have difficulty figuring this all out.

Your theory that they convert somehow into a virus is good. Or perhaps they make us susceptable to a certain unidentified virus that others would be immune to?

I suspect the mystery will not be solved in my lifetime. Like you, I have lost huge income-earning potential. Gone from working at a professional job 40 to 50 hours a week at a job requiring complex cognitive skills to SSDI and a LTD policy payment I have to fight to keep. My brain isn't really recovering like I would have hoped, but I can say that I periodically have what I consider "good brain days". This does afford me hope that perhaps I am not up to my potential.

You might be interested in the article below about Epstein-Barr and how it causes the immune system to attack myelin. Also here's a link to a full-text article by Dr. Michael Pender in Australia. It's somewhat technical but also discusses the possible role of Epstein-Barr in autoimmunity: http://eprint.uq.edu.au/archive/00001146/01/mp_ti_11_04.pdf

I think the real damage occurs when these things cross the blood-brain barrier and make their way into our nervous system. If they can mimic another type of cell, we're sunk.

I'll see if I can find any correlation with Epstein-Barr and lyme...perhaps it allows the organisms to get a better stronghold in the brain and spinal cord. When I contrated West Nile last year my Epstein-Barr antibodies were sky high. I don't know which came first - EBV is opportunistic and can reactivate under stress, or it may have already been starting to reactivate and made me susceptible to West Nile.

Thanks for bringing up the topic -

Jan

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J Neurovirol. 2004;10(5):278-283.

Cerebrospinal fluid CD4+ T cells from a multiple sclerosis patient cross-recognize Epstein-Barr virus and myelin basic protein.

Holm solidus in circley T, Kvale E, Vartdal F.

Institute of Immunology, Rikshospitalet University Hospital, Oslo, Norway.

Epstein-Barr virus�``specific CD4+ T cells could be involved in the pathogenesis of multiple sclerosis, provided they can gain entry to the intrathecal compartment. The authors have previously demonstrated that cerebrospinal fluid T cells from multiple sclerosis patients recognize autologous Epstein-Barr virus�``transformed B cells. They now report that CD4+ T cells specific for the Epstein-Barr virus DNA polymerase peptide EBV 627�``641 were present in the cerebrospinal fluid from one of two multiple sclerosis patients, and that a high proportion of these CD4+ T cells cross-recognized an immunodominant myelin basic protein peptide, MBP 85�``99. In the observed patient, the proportion of EBV 627�``641�``specific CD4+ T cells seemed to exceed 1/10 000 in cerebrospinal fluid, compared to approximately 1/100 000 in blood. These findings prove that Epstein-Barr�``virus specific CD4+ T cells can gain access to the intrathecal compartment, and suggest that Epstein-Barr virus�``specific CD4+ T cells could target myelin basic protein in the central nervous system.

PMID: 15385250 [PubMed - as supplied by publisher]

I was just reading an article maybe two weeks ago and book marked it somewhere where they actually TESTED chronic ill patients and found out they had anywhere from between 4-7 viruses at one time! And these people had been treated for all kinds of things

from yeast, to LYME, to etc.

Jan

1: Folia Biol (Praha). 2003;49(1):40-8. Related Articles, Links

Interaction of Borrelia burgdorferi sensu lato with Epstein-Barr virus in lymphoblastoid cells.

Hulinska D, Roubalova K, Schramlova J.

National Reference Laboratory on Borreliosis, Electron Microscopy, National Institute of Public Health, Prague, Czech Republic.

Since the possibility of interruption of latent EBV infection has been suggested by the induction of the lytic virus cycle with chemical substances, other viruses, and by immunosuppression, we hypothesized that the same effect might happen in B. burgdorferi sensu lato infection as happens in Lyme disease patients with positive serology for both agents. We have observed EBV replication in lymphoblastoid cells after superinfection with B. garinii and B. afzelii strains after 1 and 4 h of their interaction. We found that viral and borrelial antigens persisted in the lymphoblasts for 3 and 4 days. Morphological and functional transformation of both agents facilitate their transfer to daughter cells. Association with lymphoblasts and internalization of B. garinii by tube phagocytosis increased replication of viruses more successfully than B. afzelii and chemical inductors. Demonstration of such findings must be interpreted cautiously, but may prove a mixed borrelial and viral cause of severe neurological disease.

I'm new to this board and agree that epstein barr does play a part in this.

In June, had 2 steroid injections not knowning I had lyme and within 2 weeks had excruciating joint pain and felt like I had the flu. I was tested for epstein barr and this is the 4th time I've tested positive that I'm aware of (interesting).

Could someone please tell me where I can purchase antivirals/antibacterials? I'm assuming health food store but would love to get specific names, what works best and results you're getting.

I'm new to this board and agree that epstein barr does play a part in this.

In June, had 2 steroid injections not knowning I had lyme and within 2 weeks had excruciating joint pain and felt like I had the flu. I was tested for epstein barr and this is the 4th time I've tested positive that I'm aware of (interesting).

Could someone please tell me where I can purchase antivirals/antibacterials? I'm assuming health food store but would love to get specific names, what works best and results you're getting.

Antibacterials I'm assuming are abx. What are antivirals? Someone mentioned Paul D'Arco tea...is that available at the health food store?

Have seen and heard of it but can't remember where I saw it.

I was told I may have MS, Myasthenia Gravis, ALS, Parkinsons and many other conditions.

When I started researching this conditions, I also noticed that these patients deal with EPV as a whole too.

quote:

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Originally posted by Team Mom:
No one really cared until it totally got out of hand and now there is all kinds of money for research. Of course I'm not saying LD is comparable to AIDS but no one really seems to care about doing alot of research and saying it's hogwash when people out here are really suffering. [/B]

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Just wanted to comment on this part of your post - I recently attended a fund raiser for the NC Lyme Disease Association, and a LLMD spoke a few words. Interestingly enough, he was one of the ones in the forefront when the AIDS epidemic was coming to light in the mid-80s. And hit it head on when many other docs were running the other way.

He actually said that the emergence of these tick-borne diseases is quite similar to what happened with AIDS at first. And the parallels between the way the two have emerged are strikingly similar. Even the way the government has reacted. He says he plans to do a paper on this very subject eventually.

Also interesting that he also said that patients with tick-borne diseases have "more to bear" when compared to the emergence of AIDS. Scary thought. But is true. I think about my progression, the constant ups and downs, the unpredictability of it all. The way people and even doctors look at you when you try to tell what is wrong with you, the social isolation some of us have, the dramatic impact this has had on patients and their families. And I could go on and on.

Hard to think we are involved in something ultimately even bigger than AIDS/HIV. Might not see it in our lifetimes, but I believe one day, this will be on the news daily as AIDS/HIV now is. We hope sooner than later, as that would mean more $$$ is being put into research.

I have ben in treatment for 6 months...I am getting a little bit beter and was encouraged.

I have the HLA dr4 gene or marker or whatever it is called.

Does this mean I am sunk? I don't think I can handle abx the rest of my life....I am only 44 years old.....abx for the next 30 years seems unreasonable.....

What are we really saying here? If you have HLA Dr4 it's abx forever or being overcome buy this disease?

Many bacteria and fungi too have cyst or spore forms...this is just good engineering by nature, which wants them to survive. These forms are fairly resistant/robust.

OTOH, some bioengineering has spliced viral pieces into bacteria to make them more resistant and who knows if those are out in the "wild" ie among us. I do agree that bioweaponry and sloppy lab safety standards (universally) probably led to the AIDS pandemic and to the tickborne diseases as we know them today...

And certainly since all bacteria have sex and exchange genes, perhaps even various different types of microbes are synergistic and symbiotic and have enhanced virulence in each other's presence...there was talk a long time ago about the fact that even among children, among Dr. J's patients, there was a disproportionate amount of shingles--ie lyme somehow activated the herpes virus that caused shingles? Perhaps because they both have an affinity for nerves.

They are too virulent.

I mostly agree w/ Bryan (skyking) that with proper treatment, and resolving an infection, the body can heal. Resolving it can be a problem in some cases no doubt.

I had very bad effects from it in high doses, I feel it helps some minor symptoms, but not major ones.

I am still drawn to using it after all this time, and still being unsure, cause I know I have a virus, but separate from lyme. I actually found famvir easier to tolerate, but haven't afforded to change, as still have valtrex, which is very expensive.

Lysine is also helpful, as is eating lots of fish. Watch the arginine/lysine balance. All the foods we are not supposed to eating are high in arginine, but nuts although benefical, have a high arginine content, stick to flaxseed, for omega 3's. If you are curious about this, check it out. Eat lots of nuts and see if you get coldsores, if that is a problem for you, or maybe an unidentifiable rash may come out, or shingles may come out. Chocolate is very bad for this.

Just some thoughts

Lymiecanuck

From what I know of biochemistry, there's just no way bacteria can trasmutate and become viruses. A virus can use bacteria to replicate but it's a parasite and can't reproduce on it's own. A DNA virus like Epstein-Barr is fairly stable and seldom mutates, but an RNA virus like Ebola is much less stable and can mutate often.

If you have an active virus like EBV in conjunction with a bacterial infection like lyme, it's possible that the virus would actually use lyme bacteria for reproduction and when the bacteria "blows up" in the process, you would react to the toxins given off. That could certainly make you even sicker.

As mentioned, 95% of the population will test positive for EBV because almost everyone has been exposed to mono (in the same viral family) before the age of 25. But about 5% of us will go on to experience chronic reactivated infections and it is strongly suspected that there is a genetic component involved.

It used to be thought that EBV might be the cause of chronic fatigue syndrome, but that's been proven wrong. However an active infection (determined by doing a panel, not just a single AB test) is probably a red flag that something else is going on, whether it's cancer, AIDS, MS, lyme, a protozoan infection like Babesia, or as in my case last year, West Nile.

Also, I believe that there are very few types of damage in the body that can't be repaired when given the proper conditions. Research even seems to indicate that myelin can be repaired. I had quite severe heart valve damage from what we think was lyme or a co-infection about 10 years ago. I almost died of congestive heart failure, and yet this year when I had an echocardiogram there was no sign of damage which was really remarkable. Even my heart murmur disappeared.

Nerves, bones, and many other tissues that would seem to sustain permanent damage can eventually repair and heal. It takes excellent nutrition and I don't think you'll get there with medicine alone. Our bodies try desperately to get back to optimal health and when everything is available amazing things can happen.

Genetics do play a role in many of these things. I have a defective gene that causes a rare muscle disease and I will never be able to change that, but I have learned how to adjust my diet to compensate for the defect and I am able to function much better than most who take medications for the disease.

It takes a lot of observation and trial and error to find the things that help us heal. The medications like antibiotics and antivirals can reduce the load on our system and give us a better chance in many cases, but to see lasting improvement we have to go beyond that and look at a complete lifestyle.

I am very optimistic in spite of all the strikes I have against me. I have improved before and feel confident that I an improve again even though I am told that some of the neurological symptoms I have as a result of West Nile are probably permanent at this point.

Didn't mean to write a book, but I don't want to see anyone lose hope or despair because of lyme or any other illness. I've seen way too many remarkable recoveries not to believe in both the spiritual and natural resources for us to heal.

Jan

Maddog, your microbiology ideas are about as reliable as my mechanical skills. Where were you when I was arguing with the dealer over charges on truck brake job? Needed your help then. Oh well, when the experts get it wrong, the amateurs are allowed to dream up their own theories.

You wrote: "i would like to have somebody run a dna profile on a bb cyst form and actually see what it is and why it can't be killed."

Have you contacted Dr. Joanne Whitaker at Bowen Lab to ask for this?

Just wondering. I have been on the same track as I read and research the Chronic Lyme issues. There is a LOT more to this.

May you find the answers and solve this mystery.

I'll try look through my cell biology book for any information related to this and e-mail you privately.

Please check out this article that I just posted.

Are Stealth Virus Infections Misdiagnosed As Chronic Lyme?
http://flash.lymenet.org/ubb/Forum1/HTML/028510.html

Here is a brief excerpt:

Snip

"Normally, viruses that are infectious for human or animal cells (eukaryotic cells) will not infect bacteria (prokaryotic cells). Stealth viruses appear to have overcome this phylogenetic barrier.

The term "viteria" has been coined to define eukaryotic viruses that have acquired bacteria-derived genetic sequences. The sources of the bacteria sequences include both eubacteria and archaebacteria and both cell wall containing and cell wall deficient bacteria."

Snip

"There is increasing evidence for the direct infection of various BACTERIA by stealth VIRUSES, including the culturing of bacteria with unusual biochemical profiles from stealth virus infected patients."

I think it makes an interesting case and is DEFINITELY food for thought.

Maggie