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TOPIC: Double genotype story

Double genotype story 6 years 6 months ago #2515

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Greetings everyone. To all fellow fighters against this nasty bug, and all the good people helping us in our quest.

I'm joining forum to share my story and experience with old and hopefully new meds.
I have what is in medical terms called superinfection with two HCV genotypes (1b and 4). I've been diagnosed last year, did biopsy and luckily my score was F0/A1. I had failed Pegintron&Ribavirin TX earlier this year after 17 weeks and proclaimed non responder. I'm not sorry for that because pegi/riba combo was devastating to my body.
I'm now in search for alternative treatment, and would probably go for generic Harvoni when it became available.
Unfortunately in Serbia you cannot get meds through post, so I would have to go personally to India or Egypt.
I will share here all my experiences both in acquiring meds and during therapy.

Would really like to know is there anyone here with double genotype and how that affects HCV progression and cure rate. I have been searching on Internet but found very little info on multiple genotypes.
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
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Double genotype story 6 years 6 months ago #2538

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So far u are only the second person I came across having two genotypes

One is from fb hep c support group. She has type 1 and 3.

I think you are right in saying harvoni is suitable for your treatment. Hope you can start treatment soon. Did your doc tell you anything that we dunno?
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Double genotype story 6 years 6 months ago #2539

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I am curious how your viral load tests look like.
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Double genotype story 6 years 6 months ago #2569

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I was diagnosed last year so my first PCR was just before peg/riba tx started.
Bug count:
December 440.000
April 12 week tx 55.000
May 17 week tx interrupted 5.500
August 3 months after tx 76.000

My doc is also pretty baffled about my genotypes and he thinks that tx should eradicate both of them. He is supportive on generics issue but cannot help me with importing meds since our stupid laws prevent importing medications through mail shipments.
I now feel generally better than before tx when I had frequent headaches and brain fog issues, but I feel bug is coming back with a vengeance so I'm not gonna wait for our incompetent government to register Harvoni. Plan is to travel and buy meds locally. There are also rumor's of black market generics in Serbia but I won't trust that source.
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
Last Edit: 6 years 6 months ago by Geno1b4.
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Double genotype story 6 years 6 months ago #2578

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Privet

Mesohem manufacturer is in China. If you can afford to collect the medicine personally. Greg Jefferys has helped with importation into Russia. Contactable - just google hepatitis c homestead. He is very helpful and will do his best for you.

do svidaniya ( I have Russian friends in Melbourne)
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Double genotype story 6 years 6 months ago #2844

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Privet Berrince,
I have been in contact with Greg since June, and he gave me hope that there is cure after my failed tx.
Didn't quite understand your post. Is there a way to get generic Harvoni in Russia? Because for me it is much easier and cheaper to fly to Moscow than to India/Bangladesh?
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
Last Edit: 6 years 6 months ago by Geno1b4.
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Double genotype story 6 years 6 months ago #2848

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If you want to try Russia or Ukraine and speak/read Russian you might want to take a look on this forum Nadia previously provided.

gcforum.info/

I tried reading a bit there using google translator, and there was a thread about ordering from Mesochem. The Ukrainians and Belorussians were having good success but one shipment to Russia had gone very bad. The order, for about 20 people if I remember right, had been grabbed by Russian Customs and had disappeared for about three months. Wow ... Russians can argue pretty viciously when they're upset!

On the other hand, you're a quick WizzAir flight away from Poland, and both Romania and Bulgaria are right next door. Have you looked at import possibilities there? I bet a quick flight to Italy would do the trick as well.
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Double genotype story 6 years 5 months ago #3183

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Thx for info, I will consider all options, but so far the only sure thing is that I will have to travel to a place where I can buy the meds.
When generic Harvoni becomes widely available I'm pretty sure there will be smugglers reselling it around or in Serbia, but I would still prefer getting it from confirmed source.
The really sad thing is that Serbian medical authorities rejected Gilead offer for a discount. Allegedly they offered 12 week course for 20.000 EUR, but our corrupted officials would still rather use old treatment because they got hefty provisions from Riba/Peg manufacturers.
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
Last Edit: 6 years 5 months ago by Geno1b4.
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Raindeer Farm Research Project 6 years 5 months ago #3185

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Hey Geno1b4,

If you can successfully order from Mesochem, it is not necessary to travel. There are many posts on this forum about how to order from Mesochem. The advice from mgalbrai is very helpful on this (just use the search tab on this forum to find all his posts). Generally you have to say that you are doing research and you want a quote for a certain amount of sofosbuvir+daclatasvir (or whatever is recommended by a doctor for your two genotypes). You should calculate before-hand the actual amount in grams that you want to buy (see this page: fixhepc.com/getting-treated/how-to-do-it/buyers-club.html)

The main advice from mgalbrai is NEVER INDICATE that you want the stuff for yourself. You just want a quote for research project, and the amount you want just happens to correspond to a human dosage for 3 months (or 6 months if that is what the Dr says).

You should not volunteer any information about the purpose of your order to the salesperson. But if you are asked what it is for, you need to say that you are run a RAINDEER FARM or something like that and you have heard that sofosbufir +daclatasvir has been shown to be VERY EFFECTIVE AS ANTI-VIRALS ON HUMANS, and you have a RESEARCH PROJECT with the FACULTY staff at one of the main RESEARCH OUT-STATIONS (your home address) of the UNIVERSITY OF BELGRADE and you want to DO AN EXPERIMENT to see of this combination COULD BE USED ON RAINDEER.

If the Mesochem salesperson then says they only provide API in powder form, you then reply that this is PERFECT for you because you will be mixing the powder with RAINDEER FOOD during the trials, and you would like to proceed with the order. You should then receive details of the Mesochem bank account to wire your payment (there are also posts here that will tell you part of that bank account number for Mesochem, so that you can verify that you are sending your money to the right place).

You can probably substitute RAINDEER for any animal you like, but best to avoid very large animals like RHINO or ELEPHANT unless you really do intend to order for 10 or 20 people. But if you do that, always remember to keep the ratios of sof+led or sof+dac of the two components right so that you will be able to do the experiment for real on your next safari to Africa.

Just remember it is not the salesperson's job to check whether or not there are any raindeer farms in Serbia...

I hope you get the idea?
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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Raindeer Farm Research Project 6 years 5 months ago #3206

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Vororo wrote:
Hey Geno1b4,

If you can successfully order from Mesochem, it is not necessary to travel. There are many posts on this forum about how to order from Mesochem. The advice from mgalbrai is very helpful on this (just use the search tab on this forum to find all his posts). Generally you have to say that you are doing research and you want a quote for a certain amount of sofosbuvir+daclatasvir (or whatever is recommended by a doctor for your two genotypes). You should calculate before-hand the actual amount in grams that you want to buy (see this page: fixhepc.com/getting-treated/how-to-do-it/buyers-club.html)

The main advice from mgalbrai is NEVER INDICATE that you want the stuff for yourself. You just want a quote for research project, and the amount you want just happens to correspond to a human dosage for 3 months (or 6 months if that is what the Dr says).

You should not volunteer any information about the purpose of your order to the salesperson. But if you are asked what it is for, you need to say that you are run a RAINDEER FARM or something like that and you have heard that sofosbufir +daclatasvir has been shown to be VERY EFFECTIVE AS ANTI-VIRALS ON HUMANS, and you have a RESEARCH PROJECT with the FACULTY staff at one of the main RESEARCH OUT-STATIONS (your home address) of the UNIVERSITY OF BELGRADE and you want to DO AN EXPERIMENT to see of this combination COULD BE USED ON RAINDEER.

If the Mesochem salesperson then says they only provide API in powder form, you then reply that this is PERFECT for you because you will be mixing the powder with RAINDEER FOOD during the trials, and you would like to proceed with the order. You should then receive details of the Mesochem bank account to wire your payment (there are also posts here that will tell you part of that bank account number for Mesochem, so that you can verify that you are sending your money to the right place).

You can probably substitute RAINDEER for any animal you like, but best to avoid very large animals like RHINO or ELEPHANT unless you really do intend to order for 10 or 20 people. But if you do that, always remember to keep the ratios of sof+led or sof+dac of the two components right so that you will be able to do the experiment for real on your next safari to Africa.

Just remember it is not the salesperson's job to check whether or not there are any raindeer farms in Serbia...

I hope you get the idea?

Haha it is hilarious!
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Raindeer Farm Research Project 6 years 5 months ago #3228

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@Vororo
I bet there are research facilities popping around like mushrooms :lol:

But I have a different problem then just ordering. In Serbia it is not allowed to import medications by mail from abroad.
So there is a chance if customs check the package, they can confiscate meds, and I cant do anything about it.
On the other hand it is perfectly legal to import meds personally.
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
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Raindeer Farm Research Project 6 years 5 months ago #3318

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So the situation in Serbia is like many countries in the EU. Mail-order import of medication is not allowed (I believe Germany, France, Italy, Spain, ...), but personal import as a traveller is OK? This is really tough for people who genuinely need to import a vital medication that is completely out of reach in their own country. I do not doubt that the hand of Big Pharma has touched this kind of law (designed to "protect" patients, of course).

Probably, the most direct route for you is to visit Australia or Bangladesh or India. There are many posts on this forum on how to do it. But maybe if you have a friend or family in the UK you could have your treatment mailed to the UK and bring it back with you?

On mail imports, I would not want to advise you to do anything illegal in your country. It would be a terrible thing if your customs confiscated your medication. But is a chemical powder that someone orders for a research project (at your mushroom farm?) likely to be confiscated? If you have no other choice, maybe sometimes it is necessary to take a risk? As far as know the powder from China is not obviously identifiable as a medication (see other posts here about this as well).

Good luck!
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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Raindeer Farm Research Project 6 years 5 months ago #3371

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Importing API via mail and designate them as for research project might be an option, but I will have to investigate that with Serbian customs.
All my findings I will post here.
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
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Double genotype story 6 years 5 months ago #3408

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It's unlikely that any government employee of any country is going to tell you it's all fine to self-import drugs. They'll just go the easy route and tell you NO. The real issue is whether or not they'll actually stop the shipment when the time comes. I have no idea about the efficiency or thoroughness of Serbian customs.

From the bit I've been able to find about Romania and Bulgaria, I've come away with two notions.
1) They don't have the resources to be checking thoroughly. Not even close.
2) They're mostly concerned about collecting the import/VAT taxes.

Rachel will value the shipment however you want her to.
They should be labeled as "product samples" and valued low. Have them shipped to "Geno1b4 Testing Labs" ...

... and then test them!
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Double genotype story 6 years 4 months ago #5388

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Well finally today I had spoke with post office customs and it is official that in Serbia one cannot import medications by mail.
I got some last week finding a customs law saying that it is possible, but lady in customs explained that there is a medical authorities law that overrides customs law, saying that only authorized companies can import medications.
This info can be posted on a thread about various countries custom laws so people from Serbia can plan accordingly.

On the other hand carrying meds in amount for personal use is allowed and if asked some medical documentation has to be presented to customs officials.
There are some folks in Serbia gathered around FB page, that are trying to somehow facilitate import of generics, and if that fails I'm packing for India.
www.facebook.com/LekZaHCVuSrbiji/?fref=ts
Genotype 1b & 4, F0/A1, failed Peg&Riba TX 2015,
22 Jan. 2016 - Back from Delhi with 12 week Ledifos supply :) Thx to Parag
Started TX on 27.Jan.2016 - AST 41, ALT 59, GGT 39, ALP 74, VL 500.000, Fibroscan 6.8
19. Feb 2016 - ALT 14, AST 14, GGT 19, ALP 107
19. Apr 2016 EOT - Undetected :)
26. Apr 2016 (1 week after EOT) - ALT 14, AST 17, GGT 12, ALP 77
28. Aug 2016 (17 weeks after EOT) - UND, ALT 15, AST 12, GGT 5, ALP 39 :)
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