Considering Anti-Virals

[HopeSprings]

So I went to see a CFS specialist a few weeks ago and here's the story. My PCP thinks early antigen EBV results suggest a chronic infection - he recommend I go see this CFS Dr. She looked at my past EBV and HHV6 results and also thought this may be the cause of my problems. We re-tested and the EBV and HHV6 levels still show as high and active (or reactivated?). She recommended anti-virals for at least 6 months. She also recommended low dose naltrexone, IV saline and wants me to get a Spect scan done. She said the neuropathy could be from the EBV - because this is a member of the herpes family which are known to attack nerves. She said I'm going to be harder to treat because I've been sick for so long, but said she has had success with antivirals in other CFS patients.

I am skeptical. 20% of normal people can show these antibodies - so is this a real finding or are we grasping at straws? I cannot afford a bad reaction to medication or experience any kind of setback, but am desperate enough to possibly try this. I don't think I'm going to do the LDN - there is no proof there's anything wrong with my immune system. Will probably do the Spect Scan. I will run this by CFS people too and see what they say, but wanted to check here first. Has anyone here been down this EBV/antiviral road? If not and you still have an opinion, please share. Thanks.

[icesktr189]

LDN would greatly help because it would boost your immune system or regulate it to help fight off the infection... normal people's immune systems fight off EBV, but yours is not. I tried Valtrex once when my EBV was activated and I ended up with some crazy GI problems. I could only stand to take them for two weeks and I dont think they will do much if its not for longer.

[derekliz]

I had recurring EBV. My EBV dna was >200 (266) and I started taking Olive Leaf Extract (pill form) and Red Marine Algae (pill form) and am happy to say that mt EBV DNA levels are <200 now!

The infectious disease dr told me that antivirals would not work.

If you want, PM me and I can give you the dates that I started the supplements, dosage etc.. I do not have the info in front of me right now

Best of luck!

Liz

[icesktr189]

Also, grapfruit seed extract works wonders! I put a few drops in OJ and it helps with candida, EBV, ect.

[RichGotsPots]

Anyone ever try Tamiflu?

[ramakentesh]

My take on CFS and chronic infections and this supported by some more recent research:

CFS is a chronic state of innate immunity activation - TNF alpha and other proinflammatory cytokines are perpetually activated. In term, the immune system is paradoxically exhausting itself or perhaps the innate activation is a compensation for a weak or poor immune system.

The chronic infections themselves aer not causing the disease. rather they are triggering the immune system to attack self. But by perhaps treating the infections you are allowing the immune system to stop flaring up and reducing autoimmune activation.

[HopeSprings]

Rama - yes, this is what the CFS dr. said - she believes the immune system is constantly fighting and this is what's making us so sick. There were some other immune system tests she wanted to do, but my in network lab doesn't do them. I'm going to try to find another lab.

Dani - she presented me with 4 different possible antivirals. Maybe you'd tolerate a different one. So are your EBV levels down now? If so, did it make a difference in terms of how you feel and do you think it was the LDN that brought it down?

Liz- did your Dr. say why antivirals wouldn't work? Also, did getting those EBV levels down make a difference with your symptoms? I don't really care what my levels are if it doesn't equate to feeling better.

[ramakentesh]

Grape seed extract is also a venous constrictor. it would improve OI.

[HopeSprings]

Constrictors scare me given my experience with Midodrine.

[derekliz]

No Naomi, all the dr's I spoke with just told me that the antivirals would not work. I would say Yes, that I do see improvement with my symptoms.....especially the fatigue. Not nearly as bad as several months ago.

liz

[WyomingGal]

This thread is so interesting to me!

I also have high EBV titers, and have for at least a year that I know of. When I first came down with "POTS" they thought I had mono, and I said I already had it a few years prior, so I don't know how long it has been activated. Over the course of a year trying to treat CFS, I do feel much better, but my EBV titers are not any better. One was even higher, which indicated a recent infection. Turns out I was NOT suppose to get the flu shot and somehow didn't know that and it probably caused that slight flare because my immune system just needs to work on the EBV, not trying to make flu antibodies, too.

The doctor who is working with me has been dealing with EBV for 20 years and has not suggested to me to use ant-virals. I would love to hear your experience though if you choose them!

[ramakentesh]

I dont think the viruses are the primary problem. The immune system reaction and/or inability to counteract the infection is the problem.

[HopeSprings]

Wyoming- one of the reasons I'm considering it is because there are a few Dr's who claim to have had success. I don't know if you've looked into it. There's a Dr. Montoya out of Stanford who believes these viruses are the problem in a sub-set of CFS patients. And there's another Dr. AM Lerner who believes the same. The Dr. I saw thinks this could be it, but wasn't 100%. How does the Dr. you see deal with EBV or what are his/her thoughts on it?

A few links if you're interested

http://www.vicd.info/what.html

http://www.treatmentcenterforcfs.com/cfs_publications/index.html

[martiz]

First a disclaimer: I have ME/CFIDS. I have gotten little to no help from doctors in my area. Switched my insurance. Fixing the POTS first (or at least making it better) so I can travel to one of the ME/CFIDS Infectious Disease people out of state- Klimas, Lerner, Chia, Montoya- there are several. I am not telling anyone what to do - but I hope that I am not burned for telling you what I am doing - what I have chosen as right for me (after weighing the risks).

All that to say - I am on Valtrex 500mg per day. I have been on Valtrex valacyclovir) for 3 years and acyclovir for 3 years prior. Every day.

Without it, I wouldn't be here. When I stop taking it, the viruses reactivate and I feel like death warmed over. Cannot function. Period. Valtrex is one of the supplements/medications I would take if I were stuck on a desert island.

Yes, I know all about the danger to my liver. Yes, my liver enzymes are monitored by my doc. I have no choice - yet.

I have taken other anti-viral supplements as well as Valtrex. Olive Leaf Extract, Coconut Oil, garlic, Apple Cider Vinegar, Lysine. Several homeopathics, lemon juice/olive oil drink, Immunpro undenatured whey. Over the past 12 years, I have only tried many natural anti-virals. My preferred cocktail (what I am currently taking)- 500 mg Valtrex, 3000 mg Lysine, 2 oz raw, unpasturized Apple Cider Vinegar (in two doses). These work consistently for me without building a tolerance. Other supplements seems to stop working so I sometimes pulse them - for example, Olive Leaf Extract.

Liz: I have never tried Red Marine Algae - I will research this - thanks!

There are other antivirals as well but I have not tried them - Famvir, Valcyte, Ampligen. The current thought is that retrovirals are more effective but this is too early to say yay or nay. There are a slew of retrovirals. I haven't tried any of them.

I have other reactivated viruses beyond EBV. I have tested positive for mycoplasma (a bacteria), parvovirus B19, cpxsackie virus, cytomegalovirus, and HHV6. HHV7 was negative. All of these tests were done (over the years and with much hassle) using PCR which I believe to be more accurate.

My NK cells are extremely low. Nothing I have ever done has brought them up except for one thing - glutathione injections. Considering adding this to my protocol again but in the nebulizing form but my levels never came up very high. There are quite a few things I haven't tried yet - funds are my biggest issue. I have never tried Transfer Factors. There are several methylation steps I haven't taken - lots of room for improvement here.

Rama - I agree with you that it's not the viruses or infections per se but malfunctioning immune system. I am pursuing Methylation cycle defects to switch from TH2 to TH1 - something I have been chasing for 12 years. Any tips on accomplishing that (TH2 to TH1) would be welcome.

This is an old article and Dr. Cheney (an ME/CFIDS specialist) may have changed his stance on these TH2 to TH1 shifters. Proceed after doing your own due diligence.

http://www.anapsid.org/cnd/diagnosis/cheneyis.html

While I would never advocate taking long term antibiotics to get rid of an infection (there are several ME/CFIDS docs that recommend this), I do think taking anti-virals helps take the load off my immune system. It makes me well enough to do research, to live a reasonable life, to continue trying things to get better. While antibiotics destroy the gut bacteria, anti-virals do not. So, I have accepted this level of risk. And there is risk taking any medications - I have many family members with liver issues. My sister has cirrhossis and 3 of my uncles died of Non-Alcoholic cirhossis. So, I take medications very seriously.

I also take Low dose naltrexone. Started it about 2 years ago to replace my narcotic pain meds as I was building a tolerance to them. This is another of my "desert island" supplements. As long as I am not too physically active - it handles all of my joint pain, muscle pain. It is also a boost to the immune system but I don't have bloodwork to quantify that.

Marti

[jangle]

Marti that's great that these medicines work for you so well. I remember an article posted earlier about oxidative stress associated with CFS, do you take any antioxidants?

This idea about chronic viral infection/immune system activation is very interesting

[HopeSprings]

Marti - WOW, you're a wealth of information. I saw Dr. Susan Levine in NYC. Questions. She wrote down 4 antivirals; Valtrex, Famvir, Acyclovir and Nexivir. I guess it's up to me to figure out which one? Do you have any idea what the difference is between these? How does POTS fit in for you? Did you have CFS, then POTS symptoms came or did they come together? Also, in treating the CFS with antivirals, has it made any impact on your POTS symptoms?

Ok, I wasn't getting the connection with the olive and grape leaf extracts - so these are natural anti-virals?

[martiz]

Hi Jangle,

Yes, oxidative stress is a big deal. Yes, I do take antioxidants. High dose vitamin C, E, alpha lipoic acid, superoxide dismutase. In the past, glutathione supplementation (by injection not oral) has been effective. Caffeine cleanses to help remove toxins which relieves some oxidative stress if used with high dose vitamin C. Activated charcoal to help bind toxins - blood purifiers, etc. I have gotten away from some of this so it has been helpful to remind myself to do these things.

I have had a few genetic tests done and my body cannot remove ammonia - Tetrahydrobiopterin deficiency. There is a chapter on this (BH4 deficiency) in a chapter of Clinical Autonomic Disorders by Phillip Low but I haven't read that far yet.

Inflammation is a big deal.

The immune system defects are well documented in the ME/CFIDS world. It's not new. What is new - (4 years) is the methylation defects that can occur in ME/CFIDS which are similar to the autistic population and as I am seeing - in POTS (I think). I have two books by Dr. Low and trying to get through them so I can tie the bits together.

Unfortunately, ME/CFIDS docs don't pay much attention to Orthostatic Intolerance (Cheney has probably been the most active in this area). Just add salt and increase water. I feel that as I get older, POTS is more of an issue. Sometimes, I feel that I have been misdiagnosed and POTS is my true diagnosis.

I don't think I have EDS (pretty sure) but feel some Mast Cell disorder may be the next thing to focus on.

When I get off my antiviral protocol, my POTS is so much worse. I have near-faints while laying horizontally. I also experience adrenal fatigue more readily so it seems the endocrine system is an issue for me. On my anti-viral protocol, I can be upright much, much longer. I can attend church. I can drive with more confidence (I am still homebound though). I can go to the grocery store (using one of their carts). My brain fog is lessened.I can remember to pay bills, take care of paperwork (in small amounts). I can exercise (in small amounts).

Recently, due to my insurance change, I was given a different generic Valtrex which does not have the same emulsifiers and suspension agents and I was so, so ill. Sore throat, feverish, body aches, joint aches, feeling like there was a balloon in my head, Within two days of switching back to my regular generic, I was so much better, I wanted to cry in relief. There are 3 manufacturers of generic Valtrex that do not use these emulsifiers and I believe they do not work well. They are not in the bloodstream long enough. It seems that the blue, coated generic Valtrex have the emulsifiers and suspension agents while the white, non-coated pills do not.

Also, if you read the valtrex.pdf, two substances prolong the half-life. One is Cimetidine and the other is baclofen (I think). I can look this up if anyone wants it.

That's why I wonder so much about viral issues with POTsies - when I am sensing is that a subset of POTS patients have reactivated viruses while most do not. Maybe I should create a poll? Still trying to figure out if there are two illness or if one is the subset of the other.

Marti

[kluesyk]

I have been on Acyclovir 400mg a day now for over 5 months as well as pulses of Azithromycin 250. I test positive for mycoplasm pnuemonia antiboidies and have VERY low killer cells CD4 and CD8. The CD4 and CD8 did go up for a while after 6 weeks of 1x week myers cocktail and magnesium infusions.(Had to stop due to excessive bruising/bleeding at infusion sites)

If I stop the Acyclovir I break out in Shingles. If I stop the Azith I have terrible muscle pain and teeth pain.

So I am one who also has POTS that this helps.

[issie]

I have also used grapefruit seed ext. and it does kill off things. I have a die off reaction when I use it. I have to go really slow with it or the reaction is too intense.

I also use olive leaf daily as a preventative to problems and if I start to feel like I'm getting something I'll take 4 caps several times a day.

My other go to is the apple cider vinegar - with honey in water. Both are natural antibacterials and also help with viruses and are considered natural antibiotics. There are studies that suggest that Apple cider vinegar is known to kill strep within 24 hours of contacting it. I one time got over what was seeming to be strep by using only this. What would have been a long recovery took me about a week. (Worse sore throat I've EVER had and had been exposed to strep. But, was out of town and didn't know doctors there.)

Symbiotics Immune Formula of Colostrum has been a big help. It helped me to regain my balance of flora from having to take chemo (severe colitis). I had to kill off all bacteria both good and bad and then heal the damage that occurred. This was one of the best things I took. It is also very calming to the nervous system. I no longer have any problems with my intestines.

My sister who has CFS did try the anti-virals and unfortunately - they did not work on her. She has OI and CFS. I have HyperPOTS (both high noriepi and high bps), I believe I'm low flow. I also have low IGG levels and vitiligo and alopecia - so there is an autoimmune component to my problems also.

Just letting you know, some of these things have worked for me. I'm not 100% by any means - but, I'm not sure where I'd be without them.

Also, I find that Vitamin C is very necessary for me with my veins and also connective tissue issues. It being an antioxidant helps with other things in regard to the immune system also.

[HopeSprings]

Still trying to figure out if there are two illness or if one is the subset of the other.

Me too.

[martiz]

Marti - WOW, you're a wealth of information. I saw Dr. Susan Levine in NYC. Questions. She wrote down 4 antivirals; Valtrex, Famvir, Acyclovir and Nexivir. I guess it's up to me to figure out which one? Do you have any idea what the difference is between these? How does POTS fit in for you? Did you have CFS, then POTS symptoms came or did they come together? Also, in treating the CFS with antivirals, has it made any impact on your POTS symptoms?

Ok, I wasn't getting the connection with the olive and grape leaf extracts - so these are natural anti-virals?

I have heard of her. I don't think she would steer you wrong. I can look up some information from people who see her and send them to you offline. I prefer Valtrex (valacyclovir) to acyclovir. The difference is an amino acid called valine. I have tried acyclovir with valine but haven't given it long enough to test the dose of valine needed - also reluctant to have a downturn and reactivate my viruses. I have not taken Famvir or Nexivir (although I have Famvir in a drawer). I can look these up for you if you need help researching them.

I think I answered some of your questions about my POTS vs ME/CFIDS in my next post. let me know if you want more info.

There are many natural substances that are anti-viral in nature. Olive Leaf Extract is probably the strongest as is Apple Cider Vinegar. As issie noted, even honey is anti-viral. Garlic.

Valtrex/Acyclovir work by stopping the replication of the virus (not all of the viruses - just some of the Herpes viruses- EBV, HSV). I can't remember if it works on Cytomegalovirus - I would have to research this - I forget a lot). For this reason, you should not experience a herx reaction but I know of several people who have so be aware of that. If you are working, start on the weekend.

Apple Cider vinegar works to break down the lipid layer surrounding the virus cell. This may cause a herx reaction.

Olive Leaf Extract works on the protein coat so the action is more similar to ACV.

Lysine slows down viral replication while Arginine is said to promote replication. Changing your diet to reduce sources of arginine is supposed to be helpful. I don't pay much attention as my diet is already too restrictive.

I have found that some of the viruses replicate on an 8 hour schedule so dosing on an 8 hr schedule can be helpful. I have done this but it is very difficult for me to do due to the circadian rhythm problems that I have.

HTH,

Marti

[ramakentesh]

Nancy Klimas believes CFS is an autoimmune disease or at least an inappropriate innate immune system activation and her recent research supports this. The chronic viral infections seem a consequence. Of interest, herpes viruses are implicated in mollecular mimicry for M.gravis.

That's why I wonder so much about viral issues with POTsies - when I am sensing is that a subset of POTS patients have reactivated viruses while most do not. Maybe I should create a poll? Still trying to figure out if there are two illness or if one is the subset of the other.

There is now almost a clear consensus among researchers that some POTSies either have chronic innate immune system activation and the activation of pro-inflammatory cytokines or they have elevated inflammation from increased ANG ii.

People need to be careful linking a finding of low viral titers to feelings of constant flu. The constant flu feeling is the innate immune system.

[HopeSprings]

People need to be careful linking a finding of low viral titers to feelings of constant flu. The constant flu feeling is the innate immune system.

What about high viral titers?

[ramakentesh]

who knows but it is considered unusual for people to experience long term infections that dont show any measurable progression, have an 80% female to male ratio and that follow a relapsing remitting course in many (as in CFS).

Molecular mimicry in relation to Herpes Simplex virus is implicated in Myasthenia gravis - a condition where autoantibodies to acetylcholine receptors at muscular sights. Research suggests that some POTS patients may have autoantibodies to a3 nicotinic acetylcholine receptors in the autonomic system which would mean there is some similarity between the two conditions.

What might also happen is that an ineffectual immune system cannot get rid of certain viruses and as a consequence branchs of the immune system that arent normally involved in viral responses become activated - the innate immune system or inflammatory markers like cytokines that make you feel sick, fluey and achy but dont to anyting about the virus.

[HopeSprings]

Would this be measured by the same Achr test they use to diagnose MG?