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First antiviral, AB or immunemodulator?

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
If you had to treat intracellular bacteria as well as reactivated viruses, what would you treat first?

Would you start with 1) antivirals, 2) AB or would you start with 3) immune modulators to strengthen your immune system?

Any experience or solid advice?

Many thanks
 

Aileen

Senior Member
Messages
615
Location
Canada
Marlene, I'm about to try Lauricidin (monolaurin) to see if it will send my reactivating mumps packing. It is a protease enzyme that is supposed to be effective against not only viruses but also bacteria and other bugs, that are "enveloped". If the bugs you have are all the "enveloped" variety, maybe that would be a first step?

I can't say if this stuff works or not as I'm waiting for my order so I can try it but others seem to be helped by it.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Marlene,

I couldn't tolerate AB's by themselves and my health was always worse after taking them. What I assumed happened was that I either had a massive herx reaction, IRIS or else other organisms get out of control that were not controlled by the AB's. I didn't have any testing at the time so I don't know why I always reacted so badly. Tried different types/dosing etc.

What helped me was a 3 part approach but I only discovered this by accident. An IM (Immunovir), an AV (Valtrex) and then I began to tolerate Doxycycline and even feel better after a short course.

It was a step forward for me.

At the moment I'm taking the AV and IM with MAF314 (the yoghurt) and having a slow response. I took this combo at the end of last year and had the best response I've ever had in 25+ years so cautiously optimistic again.
 

Anne LiConti

ME25er
Messages
13
Location
Eastern USA
Anti virals do not work, and if you have sensitivities, you may have reaction to them.
AB's will give you a nice case of systemic Candida.
In 1994 Dr. Susan Levine in New York prescribed what was then known as Kutapressin, which is an immune modulator. It wasnt a cure but made the illness more tolerable, got me out of bed and back to work for a while. Then it just got me out of the house, able to make doctor appts and still meet friends for coffee and somewhat take care of my children.
The company that made Kutapression went out of business about 10 years ago and a company here in the US called Nexco pharmaceuticals started making it, and the name is Nexavir http://www.nexcopharma.com/. The problem with Nexavir is that most insurances dont cover it and you have to pay cash for it. It runs $500-$1000 a month depending on the dose. I would be taking it right now if I could pay for it.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
U cant say antivirals dont work when they have helped alot of people here. Antivirals dont help measles but thats because the antivirals used commonly in cfs target the herpes viruses ebv/cmv/hhv6, so if one has active infection for these viruses then antivirals could help. The same with antibiotics, although some people are at a greater risk of candida then others plus there are precautions to take when on abx such as nystatin, probiotics or sacchromyce bouldarri.
Nexavir would be an interesting drug to try but like u mention, the cost is way to high for many of us to afford. I think it helps people because its an immune modulator. At the end of the day our main issue is our immune system and helping it go's along way but many have to treat certain infections directly but we should be tested for these specific infections before treating them although if cfs started with a bout of mono and cant get proper testing for it then a trial of antivirals i think is worth a shot.

If it wasnt for antivirals and antibiotics as well as sleep meds there would be know way i would still be able to work now. These treatments come down to individuals with individual problems. The problem with certain treatments is that we need proper testing to know what treatment we really need or otherwise we roll the dice and do a theraputic trial waying up the risks.

Looks like u have done it tough bringing up your kids on your own with cfs. looking at your avatar you look like u would be the sister of your children, not the mother, you look great for 48, if only we felt as good on the inside as we look on the outside:(

good luck,
cheers!!
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I started on Nexavir, then added in antibiotics, and then finally antivirals.

I also started the methylation protocol in there as well and take hormones which I am deficient in to support my dysfunctional HPA axis and endocrine system.

Every time I started something new, I would feel worse at first but felt better over time and I have improved quite a lot over the last year of these protocols. I am so glad for all these meds!

Ema
 

Anne LiConti

ME25er
Messages
13
Location
Eastern USA
Hi Heapsreal :)
I know, I sound very critical :) If anti virals work for you, thats great, as well as antibiotics.

I had systemic candida very bad because of over usage of antibiotics, and it took 4 years to get rid of it. I had sensitivities so bad at the time from the thing, I couldnt leave my house with out an epi pen and a bottle of benadryl in my purse because I never knew when I was going to have a reaction to something I ate or a medication I took.

Because immune system issues are a big part of my CFS (IGG Subclass deficiency), I dont recommend them unless of course one has strep throat or something on that order.

I used to take immune globulin shots at home for years and now I go to an immunologist to monitor the situation in case I need to go on IVIG. I keep the immune globulin prescription current on my file at the pharmacy if I need a vile for a boost for something. Insurance doesnt pay for the IM injectable so I cant finance it myself anymore on a regular basis.

Thankyou, we all tend to look good on the outside. I think its all of that sleep and hangin out in dark rooms.
I will say, CFS has done wonders for the anti aging process on the outside *grin* :)

Nice to meet you :)
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Hi Heapsreal :)
I know, I sound very critical :) If anti virals work for you, thats great, as well as antibiotics.

I had systemic candida very bad because of over usage of antibiotics, and it took 4 years to get rid of it. I had sensitivities so bad at the time from the thing, I couldnt leave my house with out an epi pen and a bottle of benadryl in my purse because I never knew when I was going to have a reaction to something I ate or a medication I took.

Because immune system issues are a big part of my CFS (IGG Subclass deficiency), I dont recommend them unless of course one has strep throat or something on that order.

I used to take immune globulin shots at home for years and now I go to an immunologist to monitor the situation in case I need to go on IVIG. I keep the immune globulin prescription current on my file at the pharmacy if I need a vile for a boost for something. Insurance doesnt pay for the IM injectable so I cant finance it myself anymore on a regular basis.

Thankyou, we all tend to look good on the outside. I think its all of that sleep and hangin out in dark rooms.
I will say, CFS has done wonders for the anti aging process on the outside *grin* :)

Nice to meet you :)

The only defiency i have is nk dysfunction, other immune tests show my immune system is activated, my igg subclasses are actually elevated as well as t cells. Candida is just another infection we are open to getting and abx can worsen the situation i guess. Its a pity most docs dont advise antifungals and probiotics with abx, probably help avoid alot of fungal/yeats issues they cause.

Are IM immunoglobulin injections expensive?? Do u know if they improve nk function?

The antiaging process, i think its all the dam supplements we take,just not fixing the antiaging process inside. Sometimes i think should we be taking these antiaging supplements, will it just makes us live longer and we end up in a nursing home for 50 yrs, aarrgghh

cheers!!
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
I used to take immune globulin shots at home for years and now I go to an immunologist to monitor the situation in case I need to go on IVIG. I keep the immune globulin prescription current on my file at the pharmacy if I need a vile for a boost for something. Insurance doesnt pay for the IM injectable so I cant finance it myself anymore on a regular basis.
Hello Anne

@ anne
Many thanks for your time and reply. We have an endocrinologist here in Belgium who considers IGG deficiency a similar condition as diabetes. It has to be treated continuously in order not to get worse every time again. Unfortunately, the insurance and even Belgian healthcare system do not agree with him and even tried to suspend him for that. In the end it will turn out he was right. I wish you the best and hope you can a solution.

Luckily I don't suffer IGG deficiency but I have high Coxsackie, CMV, parvo, adeno as well as chlamydia pneumonia and some mycoplasma just to mention the viruses and bacteria. A few years ago I had bartonella as well but it is gone now. I tried low dose naltrexone (LDN) and it helped a lot. Tough medicine though and I consider giving it a second round soon.

@ ema
The methylation protocol is too heavy at times. It makes me very depressed, even a little crumb. It works though, the numbness and the brainfog disappears everytime again.

@ heapsreal
LDN improves the number of NKcells
www.ldnscience.com
http://www.pdazzler.com/wp-content/pdf/ldn_for_disease_prevention_quality_of_life.pdf

Thanks everyone for your input!
 

Anne LiConti

ME25er
Messages
13
Location
Eastern USA
Hey Heapsreal :)

Talking about nursing homes........... my mother was in an assisted living facility 10 years ago and I have to confess.....it looked good hahahahahahahaha. I thought wow, I could use a place like this LOL.

I used to chat on a CFS chat for years and we would talk about our supplements and one thing we would say is, if we all took our empty bottles and stacked them together, how high would the stack be??? Would it be as high as the Empire State Building?!?!?!?!?!? Would the stack be as long as the perimeter of the earth?!?!?!? lol

Im still a supplement junky *grin* :) I should start stacking the bottles and see how high the stack is at the end of each year ;)

Immune Globulin Injections: The price? It comes in a 2CC vial and the last time I bought a vial it was $27 dollars for the one 2CC vial. The price has changed through the years, different companies have made it, and its not always available. The last time I got a vial was about 4 years ago when I had to have a tooth pulled and it was $27 for the vial.
When I took it on a regular basis, I needed 2 vials a week, 8 vials a month. At one time I had the cash to pay for all of the meds, now that $27 dollars might as well be $270 dollars.

You know, I dont know if IGG improves NK function, I can only tell you about IGG subclasses. If IG subclasses 2, 3, 4 are low normal, borderline or actually below normal, immune globulin injectable works great. If IG subclass #1 is low, you need IVIG because #1 is 28% of the immune system and even if you take antibiotics, the body cant fight the infection.
My IG Subclass #1 has been low for the first time this past year. Its not low enough for IVIG yet. If it does get that low, my immunologist will send me for the infusion.

Thanks again so much for writing to me,
Anne :)