Gingergrrl's Journey with Famvir

[Misfit Toy]

A wheelchair brings independence! If I need one ever, I'm doing it!

 

[taniaaust1]

@Dr.Patient Thank you and that was very reassuring to me. My best hope is that the Famvir not only helps the fatigue but also all the autonomic problems that I've been having.



@taniaaust1 This is a very interesting question and I've been thinking about it all day and honestly am not sure what the answer is?! I've been trying to decide if I am in denial or if I feel some stigma toward wheelchairs but I honestly don't think that is the case (on either issue.) I think my struggle boils down to that I still am not sure if I really need one and second that I cannot figure out how it would be logistically practical.

If I went out alone, I could not lift, carry, or push it by myself and I have weakness in my right arm due to a separate issue besides the CFS and tachycardia. So having it would not increase me being able to do more errands alone or increase my independence b/c I could not use it alone unless it were electric (but this would never fit in my car and I could never get it out by myself.) Also, if we went to the store, my husband would have to push the wheelchair and the shopping cart which seems like an extra burden.

Whereas the handicapped placard for my car would absolutely increase my independence b/c I could guarantee myself a parking space right next to the store or Dr's office. So I think for now, if I pursue anything it will be the handicapped placard. I can only walk a certain amount before I have to stop so in my healthy days I could park several blocks from a Dr's office and be okay which is out of the question now. But if I park right by the entrance, I can walk into the bldg and be okay.

Sounds like you do have your answer then and its not the time to get one if it isnt going to make a difference in your case. (the carts which go onto wheelchairs which many supermarkets have, actually dont fit much shopping into them).

 

[Gingergrrl]

I wanted to give an update in my Famvir thread and today is the end of Day 11. The last few days I have felt really sick, similar to when I had mono, except minus the fever and sore throat. I was freezing for hours with such extreme fatigue and shortness of breath that I couldn't even open my own pill bottles or prepare my own food. But my temp was barely even 97 degrees as usual.

My CFS Dr said I might feel worse the first month of Famvir before feeling better so I guess this is what he meant. I've been in frequent contact with him and we are keeping my Famvir dose the same and not increasing it at the two week point as we had once discussed (but may still increase in the future.)

Some of my other test results are back and the Mast Cell tests he ran all came back normal and HHV-7 was negative. The Parvo tests are still pending and the Clamydiae Pneumonia repeat test the lab messed up and did not run (which is the one he thought was initially a false positive.) So in a couple weeks when I run the Famvir labs, I will do that test again as well. I was too sick to get to the lab to do my regular thyroid tests and had to cancel my appt with my endocrinologist which I've never done before.

I also have not yet started the Methyl-B 12 shots or Methyl-Folate yet even though the box arrived two days ago. I was afraid to start it while feeling so ill and hoped to start it on a day that I felt at my normal baseline level of ill if that makes sense.

I will also be having an exercise echocardiogram at my cardiologist's office on Aug 20th. My CFS Dr spoke to her and both feel this is a good test for me b/c it will capture an image of my heart during exertion. The regular echo test (done while lying flat) showed no damage or dysfunction which was good. But I continue to have a lot of shortness of breath and autonomic stuff and they want this test to rule out there is not another problem.

It is not like the CPET where they encourage you to go to maximum capacity. In this test once my HR is raised, they take the echo picture to see what is going on. It is at 2:30 pm and I can't take the beta blocker that morning (which could alter the results) so I will probably only be on the treadmill for a few minutes and my HR will be high enough to stop. I am hoping my cardiologist will let my husband come in the room, too!

I am so thankful to my CFS Dr. for coordinating with my cardiologist and thank God that I found him. I am thankful for the Famvir even though it is temporarily making me a bit sick. I am also very grateful to all you guys on PR for all your feedback and support.

 

[Gingergrrl]

I did my very first Methyl B-12 shot today (well actually my husband did it ) and it was not too bad! I could tell when I woke up that I felt better than yesterday so I figured it was as good a day as any to start it. It didn't hurt b/c the Dr selected a very tiny needle. My arm kinda stings now after the fact but I guess that is normal? Also, the liquid was bright red which I was not expecting but assuming that is normal, too?

I started with 5 mg/ml and if that goes well, I will increase to 10 mg/ml. It will be 3x/wk for the first month and then probably switch to the sublingual kind. I will be starting the Methyl-folate (pill) tomorrow and didn't want to start both on the same day in case I had a bad reaction, so I would know what was from what.

 

[Iquitos]

Just to reply to part of your post: yes, the B12 injection liquid is bright red. Another important fact that may not have been menitoned is that light destroys the potency of the injectable liquid so it should be kept in the dark as much as possible. That is one of the reasons for switching to sublingual. You don't know how much light the liquid was subjected to while in transit to you.

 

[Gingergrrl]

@Iquitos, my Dr and the compounding pharmacy told us to keep it in the dark so we have done that but I agree, there is no way to know how much light it was subjected to in transit. I am hoping it was okay b/c it was packed deep in a box with lots of styrofoam peanuts but who knows?!!

 

[Sushi]

@Gingergrrl

Just be aware that taking either methy B12 or active folate on its own is very different from taking them together. When taken together they will work on the methylation cycle. Just be alert!

Sushi

 

[Dr.Patient]

@Gingergrrl
Are you back at your baseline, like before you started the famvir? I would seriously consider postponing the exercise echo, risk/benefit ratio not good at this time.

 

[Gingergrrl]

@Gingergrrl Just be aware that taking either methy B12 or active folate on its own is very different from taking them together. When taken together they will work on the methylation cycle. Just be alert!

@Sushi I've been asking people on PR about this b/c it is a major concern for me but my CFS Dr wanted me to take both the B-12 shots & methyl-folate. I waited until I was on Famvir almost two weeks so I did not confuse the side effects.

What should I be looking for when I start the methyl-folate tomorrow that would be of concern? If you can explain in really non-scientific terms that would be great!!! I plan to take it in the morning in case it causes anxiety or insomnia and bought the niacin as recommended by Caledonia if I have a really bad reaction.

 

[Sushi]

@Sushi
What should I be looking for when I start the methyl-folate tomorrow that would be of concern? If you can explain in really non-scientific terms that would be great!!! I plan to take it in the morning in case it causes anxiety or insomnia and bought the niacin as recommended by Caledonia if I have a really bad reaction.

Non-scientific terms = feeling like crap!

Sushi

 

[Gingergrrl]

Non-scientific terms = feeling like crap!

LOL . Feeling like crap, I am used to and can live with! I was just wondering if there was something dangerous as many people have warned me and I am trying to nail down the specifics :thumbdown:. I can deal with nausea/GI stuff as well as insomnia but my biggest fear is tachycardia or heart issues .

 

[Gingergrrl]

@Gingergrrl
Are you back at your baseline, like before you started the famvir? I would seriously consider postponing the exercise echo, risk/benefit ratio not good at this time.

@Dr.Patient It is very hard to say as I have had both good and bad days since starting Famvir. I had two horrible days in a row but today is much better (so far!) However, the shortness of breath has been a major issue for me (separate from the tachycardia which is controlled by the beta blocker.) Both my CFS Dr & cardiologist want me to do the exercise echo and felt they could not conclude all my issues were autonomic/CFS related without this test.

Although it makes me nervous, I get out of breath just walking across the room so I think my HR will rise very quickly on the treadmill and the test will be over so they can take the echo picture. It is not like CPET where you bike for 8 minutes for two days in a row to maximum capacity. I might be on treadmill for one minute and it's over. I think the potential results might be worth the potential cost (b/c either it will show my heart is okay or it will show a problem which needs further testing and treatment.)

What are your major concerns? And I genuinely want to know (even though it might seem like I am challenging you- that is not my intention!)

 

[Sushi]

@Gingergrrl many people find that adding a new level of treatment (in this case methylation) can exacerbate all their symptoms. This happened to me when beginning a methylation protocol. All my usual symptoms were heightened to the point of being bedbound. That is why many recommend "low and slow"--you don't know what you are getting into until you add that second magic ingredient.

Sushi

 

[Gingergrrl]

@Gingergrrl many people find that adding a new level of treatment (in this case methylation) can exacerbate all their symptoms. This happened to me when beginning a methylation protocol. All my usual symptoms were heightened to the point of being bedbound. That is why many recommend "low and slow"--you don't know what you are getting into until you add that second magic ingredient.

I thought "low and slow" meant starting with a low dose/amount? My Dr initially recommended doses of B-12 & Folate that seemed very high so we discussed it and I am starting both at lower doses.

Do you mean, however, to just start B-12 alone and do that for a period of time so the body adapts and then add the Folate? At present the B-12 shots are 3x/wk and the Folate (which I have not started yet) is supposed to be every day. How long would you recommend doing B-12 alone before adding Folate?

This has been a major concern for me so I don't want you to feel that you are adding a concern that I did not already have. I want to increase my chances of success as much as possible!

Also, I am compound heterozygous on MTHFR and was wondering is that what is meant by the "Partial Methylation Block" -- that my body is doing some methylation, but just not fully?

 

[Sushi]

I thought "low and slow" meant starting with a low dose/amount? My Dr initially recommended doses of B-12 & Folate that seemed very high so we discussed it and I am starting both at lower doses.

Do you mean, however, to just start B-12 alone and do that for a period of time so the body adapts and then add the Folate? At present the B-12 shots are 3x/wk and the Folate (which I have not started yet) is supposed to be every day. How long would you recommend doing B-12 alone before adding Folate?

This has been a major concern for me so I don't want you to feel that you are adding a concern that I did not already have. I want to increase my chances of success as much as possible!

Also, I am compound heterozygous on MTHFR and was wondering is that what is meant by the "Partial Methylation Block" -- that my body is doing some methylation, but just not fully?

No that isn't what is meant by a partial methylation block. You can only discover your functional methylation level by getting your levels of the active nutrients involved, tested. I had a partial methylation block without SNPs in MTHFR.

How much folate are you going to try? "Slow" usually means increasing doses slowly.

Sushi

 

[Dr.Patient]

@Dr.Patient It is very hard to say as I have had both good and bad days since starting Famvir. I had two horrible days in a row but today is much better (so far!) However, the shortness of breath has been a major issue for me (separate from the tachycardia which is controlled by the beta blocker.) Both my CFS Dr & cardiologist want me to do the exercise echo and felt they could not conclude all my issues were autonomic/CFS related without this test.

Although it makes me nervous, I get out of breath just walking across the room so I think my HR will rise very quickly on the treadmill and the test will be over so they can take the echo picture. It is not like CPET where you bike for 8 minutes for two days in a row to maximum capacity. I might be on treadmill for one minute and it's over. I think the potential results might be worth the potential cost (b/c either it will show my heart is okay or it will show a problem which needs further testing and treatment.)

What are your major concerns? And I genuinely want to know (even though it might seem like I am challenging you- that is not my intention!)

Ok, if it's only a minute or two, it's probably ok.

 

[Gingergrrl]

Ok, if it's only a minute or two, it's probably ok.

After talking to my cardiologist I suspect it will only be for a minute or two b/c without the Atenolol, my HR will raise quickly. They can also stop the test at any time if I am not able to do it.

 

[Gingergrrl]

@Sushi Is it normal for my arm to turn red/pink (from the dye) not like a bruise where I had the B-12 shot? It's like the dye colored my skin!

 

[Sushi]

@Sushi Is it normal for my arm to turn red/pink (from the dye) not like a bruise where I had the B-12 shot? It's like the dye colored my skin!

It has never happened to me and I inject subcut. Could it be irritation/inflammation from the injection itself? I think it was your first injection so maybe you haven't perfected the technique?

Sushi

 

[Gingergrrl]

@Sushi I called the compounding pharmacy and spoke w/pharmacist re: all the issues I asked you and want to post the info in case it helps anyone else down the line.

1) He said it is better to refrigerate it after opening although not absolutely required and I want to thank you for telling me this !!!

2) He said the first time you pee it will be red/pink like the dye and then goes away which is exactly what happened to me (I know... TMI )

3) He also said it can turn your skin red/pink at the injection site where the dye diffuses under your skin and this was nothing to be concerned about and not an allergic reaction. I asked him if this meant the dose was too high to absorb but he said no.

My husband did the shot so I blame him LOL.