• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Nexavir and sore throat

soxfan

Senior Member
Messages
995
Location
North Carolina
I am on my 6th dose of Nexavir and I have developed a terrible sore throat and swollen glands. This is not something I usually have. I was wondering if anyone knows if this is a reaction to the Nexavir (I am doing the gel) or just a coincidence. I thought maybe it was a flu but I have no temperature (97.4).

I couldn't find any information on whether or not Nexavir can cause some type of herx reaction or maybe aggravating the virus's...my doctor told me nothing about what I could expect. Thanks..

Kim
 

Waverunner

Senior Member
Messages
1,079
I took Nexavir for several months. It caused some problems during the first days (headaches for example) but these things cleared up pretty fast. I did not have a sore throat or swollen glands as an effect of Nexavir. Give it some more days and you will know.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Soxfan,

I've now taken 5 injections of Nexavir and after about 3, I started getting a big old cold sore. Herpes anyone? I'd say that there is a connection.

Interestingly, while I get a slight red itchiness at the injection site, it only lasts about 10 minutes--so I guess I am not very sensitive to phenols.

I'm doing injections of Hydrox B12 and Nexavir daily and GcMAF once a week--that is a heck of a lot of syringes for the garbage collector to contemplate. Guess you seal them in some kind of canister and then throw them out? What do others do?

Oh, the little problems we have!

Sushi
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Sushi there is a little gadget that cuts the top off the needles, which can then be disposed of as normal household waste, it collects hundreds of needle tops, I've only had the one for a few years. I would think you can order them online, I got mine from Dr Myhill's office.
 

girlinthesnow

Senior Member
Messages
273
Hi soxfan,are you on GcMAF? I've had swollen glands and a sore throat from about week 6, I'm now on week 11 of nexavir and GcMAf , so it could be either in my case.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I am not on GcMAF..I have finished my 10th round of Nexavir and don't really feel any different. The sore throat I had for a over a month is now gone. I have one more vial of Nexavir and that will be it for me. It is too expensive to continue especially where I haven't noticed anything positive...I see Dr. Komaroff in three weeks and find out what he has to say. I do want to add that I called the office and Dr. Komaroff said none of his patients have ever experienced a sore throat from taking Nexavir.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I am not on GcMAF..I have finished my 10th round of Nexavir and don't really feel any different. The sore throat I had for a over a month is now gone. I have one more vial of Nexavir and that will be it for me. It is too expensive to continue especially where I haven't noticed anything positive...I see Dr. Komaroff in three weeks and find out what he has to say. I do want to add that I called the office and Dr. Komaroff said none of his patients have ever experienced a sore throat from taking Nexavir.

Hi Soxfan,

Yep, Nexavir sure is expensive! When you say you've finished your tenth round, do you mean the equivalent of 10 2cc injections? (If I remember you are using the gel) How often are you taking it? My doctor (KDM) doesn't expect us to notice changes from Nexavir for a long time--many months. Big expense! But he does feel it is justified--particularly when taken in combo with GcMAF.

I am going on trust here and hoping it is benefiting. It's effects are not necessarily reflected by symptoms as it works with the cell surfaces. I don't know much of the science behind it. Maybe someone else can say more.

Best wishes,
Sushi
 

Daffodil

Senior Member
Messages
5,875
does dr. komaroff think xmrv is the cause? i havent heard much from him in a long time. i guess he isnt prescribing arv's...
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I have only seen him once and I don't think he prescribes much of anything...He never mentioned XMRV or tested me for it. The only thing he suggested was Nexavir and nothing else. I am fairly certain he doesn't precribe arv's since he said they have not yet been proven to be beneficial. I know he does research because I go through his research assistant for any questions or concerns I have. I don't think I will be given anything different at my next appt. He also said Nexavir helps 'some' people.

Sushi- Yes I had the equivalent of 10 injections. I am not going to continue because I have had zero response. Not even a tiny one. Like I said above that Dr. K told me it helps 'some' people. I will probably end up going back to my Lyme doctor because he is much more willing to try other things. I can't justify the cost of the Nexavir right now...
I hope you have good results from your treatments.
 
Messages
9
soxfan:

Sorry to hear that the Nexavir has not worked for you. Dr. De Meirleir feels that Nexavir often takes at least 3 months to really
start to work in many people. I'm not pressuring you to continue. I know we all have financial limitations.
I just want to make you aware the you might want to keep those facts in mind.

Hogwild
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I had heard it takes months to notice anything. My doctor Dr. Komaroff wanted me to take it for 1-2 months. I am seeing him this week so will find out if I should continue. I did take the equivalent of 20 doses which is about 2 months. I was hoping for some type of response but I only had the sore throat...
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi soxfan,

I was also told not to expect symptoms results before many months--even taking 2 ml per day. I believe it works on healing the cell surfaces and preventing viruses and retroviruses from entering, so the effect is less noticeable than directly killing viruses. Don't quote me though--this is just what I remember.

My doc wants me on it minimum of about 7 months before re-evaluating the daily injections. It is a shame that it is so expensive.

Let us know how it goes,
Best wishes,
Sushi
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Sushi- My doctor might want me to continue..I will find out on Friday. I don't have any at the moment to continue using. We tried to get it through our pharmacy but so far have had no luck...Yes it is expensive. I hope you get some results from it.

Kim
 

citybug

Senior Member
Messages
538
Location
NY
I have heard there is now a nexavir patch. Does anyone know which pharmacy? Or have you tried it?
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I did Nexavir gel. My husband is a pharmacist so he was able to compound it for me. I don't know how they could make it into a patch.
 

citybug

Senior Member
Messages
538
Location
NY
Thanks. I didn't see it on their website, but I can try calling. When I searched there were Teitelbaum posts about the patch but they deleted their forum.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I can tell you for certain that the gel is very well absorbed because after a few hours I could taste it in my mouth and it was totally gross!

Most compounding pharmacies should be able to find out how to do this. My husband works for a chain where they do no compounding but he was able to go online and find out how to compound it. If anyone wants the "recipe" I will be happy to write it up and post.
 
Messages
40
Location
East Coast, US
Hi All,

I use to take Kutapressin (which was very similar) if not the same as Nexavir is now.
I am saddened to hear that it is so expensive as it was cheap 20 years ago :(

That being said I did an injection every day for 1-2 years I can't remeber now since we are going back 20 years.
What I do know is that it took 6 months for me to see any difference... I was bedridden with CFS and it got me up and
around after 6 months. So I was more housebound and started to do a bit of walking etc.

I also did B12 injections and magnesium injections (I was a pin cushion).
Kutapressin daily, B12 3x - 5x weekly, Magnesium 1x weekly.

So I just have to say to sox keep with it if you can two months is not long enough to see results with it.
Also I'm curious how expensive is it?

I use to get the vials of Kutapressin for like $20-$25 maybe I can't remember exactly but I know it was cheap.

Hope Love Light