Gingergrrl's Journey with Famvir

[Misfit Toy]

I never had luck with B12 shots. That burst of energy never came. I didn't do methyl folate though with it. Will soon, however. Going to a Sean Bean who worked or trained with Yasko. $350 for first appointment. Usually 3 hours long. Goes over whole 23 and Me and 6 months of tests and your bio.

Still have not taken Zantac.

Ginger, so glad you have stuck with Famvir. Major thumbs up!

 

[Gingergrrl]

@Misfit Toy Thanks for the support and good wishes and today is day 15 with Famvir. So far, the two Methyl B-12 shots have given me a little more energy and I will be starting the Methyl Folate later this morning. I am a little nervous about it but starting at a fraction of the dose originally recommended to me and will slowly build it up.

Good luck with your appt with the Methylation expert and I hope you get a lot of good info from him. It will be great to go over your whole 23andMe test with an expert.

I haven't taken the Zantac yet either and need to go back to CVS and hopefully exchange the Tagamet for Zantac.

 

[Gingergrrl]

I wanted to give an update since today is day 20 on Famvir and it has been very helpful for me to document my course of treatment on PR (besides in my little paper notebook!)

I had six really good days in a row (in which my fatigue was better, significantly less shortness of breath on exertion, better concentration so it was easier to read and watch TV, and I was able to drive myself to three errands- a blood test, the pharmacy, and the bank.)

I am still only able to walk a very short distance and lucked out all three places with getting an amazing parking space. But it made me realize that I need the disabled placard and got the application from the DMV. Tomorrow I see my cardiologist for the exercise echocardiogram test and will bring the application.

I am a bit nervous about the exercise echo as I will have to walk fast on a treadmill without taking the beta blocker (Atenolol) that day. But my cardiologist will be in the room the entire time and I trust her and she will stop the test if I cannot do it. I meet with her after the test so I am assuming she will know the results right then and there (although I do not know this for sure.) If anything is abnormal then I will need some further testing but praying this is not the case and that all my issues are autonomic from the EBV virus (vs. heart damage .)

The last two days were not as good and I've had increased fatigue and shortness of breath again with the slightest exertion. Yet it feels very different than PEM b/c I no longer have the "Sickly" type of fatigue. I used to feel freezing and feverish as if I had mono or a bad flu and that part is literally gone (hopefully forever but we'll see- I don't want to get ahead of myself.)

My CFS doctor e-mailed me the lab rec this morning so I need to do the basic labs (to make sure my kidneys & liver, etc, are tolerating the Famvir) plus he is having me re-do the Chlamydia Pneumonia IgG & IgM and the Parvovirus B19 IgG, IgM and Quant Real-Time PCR. The first one he suspects was initially a false positive and the Parvos got messed up or missing by the lab twice so he wants me to repeat the whole thing. He is very thorough which I really appreciate and I thank God every day that I found him.

My doctor will most likely be increasing the Famvir but wants to wait until after the results of the exercise echo. The headaches and facial pain from the Famvir went away but we suspect they will return with the higher dose (but that is okay and I am not worried!)

One of my best friend's from childhood is coming over this afternoon to visit me (she lives on the east coast so I only see her once a year) and I actually feel well enough for the visit. I really feel that the Famvir and B-12 shots are doing something positive for me and I am trying to take it day by day and not get ahead of myself.

I am also almost done reading "How to be Sick" by Toni Bernhard which is an amazing book with some great coping techniques for staying in the present moment (which I am not very good at... actually I am terrible at.)

 

[AndyPandy]

Happy to hear you have been enjoying the book. It's not the easiest read but worth it in the end. Good luck for the exercise echocardiogram.

 

[Gingergrrl]

Happy to hear you have been enjoying the book. It's not the easiest read but worth it in the end. Good luck for the exercise echocardiogram.

@AndyPandy Thank you for recommending the book and it's the first book I have been able to read and truly enjoy in a long time. It is a difficult book in many ways but well worth it like you said.

Thank you also for your good wishes for my test tomorrow. I am pretty nervous about it b/c I take the beta blocker every morning so it is hard to imagine not taking it and then exercising on a treadmill. There is part of me that feels it is dangerous but both my CFS Dr & cardiologist want me to do it (and I really trust both of them) so that reassures me that it will be okay. I just want to get it over with!

 

[daisybell]

Good luck! Hope it goes ok and the results are useful.

 

[Gingergrrl]

Good luck! Hope it goes ok and the results are useful.

@daisybell I wanted to thank you and everyone who prayed for me and wished me luck for this test. I so appreciated the PM's and posts and they made me feel less afraid.

The exercise echo went well but had a rocky start b/c I was given misinformation by the technician which scared and upset me. My cardiologist had told me that she would be in the room for the test and that once my HR reached around 160 we would stop the test (even if it only took one minute) to do the echo picture. She said I could also stop at any point if I felt I couldn't proceed.

So when I arrived, and my husband was parking the car, a technician I had never met before took me to the room. I was walking very slowly b/c I did not take the beta blocker or Florinef in preparation for the test and was out of breath. Instead of understanding, she was rushing me and made a comment joking if I had "Had a hard day?" I wanted to tell her "No, I am just very ill and walking as fast as I can" but decided to leave it alone.

When we got to the room she told me my cardiologist would not be present for the test (which turned out not to be true!) and that it was a 5-10 min test which involved sprint walking and running on the treadmill and said, "Is this going to be a problem for you?" I started to panic and got tearful (which I do when I panic) and thank God my husband arrived at that point. He explained to her that I was impaired by autonomic issues and that my cardiologist was aware of all this and so the test may be conducted differently than with other patients.

She left and another tech came in (who was wonderful) and then my cardiologist came in and said she was always planning to be present which calmed me down. They put the electrodes on me and took the initial echo (lying flat) and then connected me to the treadmill. They gradually increased the incline and speed (and I was NEVER running) and my HR reached 160 in about four minutes and they stopped the test and did the second echo to capture my heart under exertion/stress.

I was impressed with myself that I even lasted for four minutes without the beta blocker and feel that I could not have done this prior to starting Famvir. My arms got very tired holding onto the bar on the treadmill and I do not have normal strength in my right arm due to prior injury from Levaquin. I also got a pain in my right side and my calf started to spasm but I continued until they stopped the test at four minutes.

My cardiologist said that my preliminary results were completely normal but that she wanted to "Go over everything with a fine tooth comb" and will call me by next week to go over everything. She had referred me for a consult with another cardiologist who is an autonomic specialist and now that this test today basically confirms my issues are autonomic, I will be seeing him next Fri. The appt was made months ago but if this test had shown some other cardiac problem that was not autonomic, we might have canceled the appt.

Right after the test I took all my electrolytes, salt stick & potassium, meds, etc, and actually am feeling okay right now (but expecting to be feeling worse tomorrow.) My cardiologist feels that EBV/mono was the trigger of my autonomic issues and tachycardia but she does not understand the mechanism how or why this occurs? If anyone can explain it, please let me know!!!

 

[zzz]

Sounds like quite a day! It also sounds like you're getting some competent help there.

My cardiologist feels that EBV/mono was the trigger of my autonomic issues and tachycardia but she does not understand the mechanism how or why this occurs? If anyone can explain it, please let me know!!!

The "why" seems pretty straightforward - EBV is a known trigger for ME, which invariably seems to involve dysfunctions of the hypothalamus, such as down regulation of the HPA axis and problems with the autonomic nervous system (among other things). How EBV or any of the other triggers get this set into motion is not well understood at this point.

 

[Iquitos]

Sounds like quite a day! It also sounds like you're getting some competent help there.


The "why" seems pretty straightforward - EBV is a known trigger for ME, which invariably seems to involve dysfunctions of the hypothalamus, such as down regulation of the HPA axis and problems with the autonomic nervous system (among other things). How EBV or any of the other triggers get this set into motion is not well understood at this point.

Here's an explanation that makes sense to me:

http://simmaronresearch.com/2014/02...on-hypothesis-chronic-fatigue-syndrome-mecfs/

 

[zzz]

Here's an explanation that makes sense to me:

http://simmaronresearch.com/2014/02...on-hypothesis-chronic-fatigue-syndrome-mecfs/

Definitely a fascinating theory - it would certainly provide the "missing link" describing how everything gets started. And since everyone's got some herpes viruses, this could apply to all cases of ME - even where nothing active shows up in the blood. This looks very promising - I'll definitely be looking forward to the upcoming studies.

 

[Gingergrrl]

The "why" seems pretty straightforward - EBV is a known trigger for ME, which invariably seems to involve dysfunctions of the hypothalamus, such as down regulation of the HPA axis and problems with the autonomic nervous system (among other things). How EBV or any of the other triggers get this set into motion is not well understood at this point.

@zzz I get the first part re: EBV triggering ME and causing dysfunctions of the hypothalamus but not sure what down-regulation of the HPA axis means (even though I have heard the term a lot.)

@Iquitos Thank you for posting re: the vagus nerve theory and I have heard that before but not explained as well as in the Simmaron link and article. That research looked amazing and very promising and I hope Dr. Van Elzakker is able to get the support and funding that he needs.

 

[Gingergrrl]

I wanted to give a quick update post exercise echo test and my main side effect is severe pain in my arms, neck, and calves/legs (which had not done that level of exercise in four years!) I am also extremely tired but it does not feel like the sickly kind of tired and I really believe that is due to the Famvir.

My cardiologist called me this morning to let me know that the test was normal and I did not have any blockage or ischemia. She said her diagnosis now for sure is "Autonomic instability or dysfunction" vs. a separate cardiac problem. So I will be consulting with another cardiologist next week who knows more about autonomic issues and can hopefully steer me in the right direction. I was very happy to learn there was not a separate cardiac issue in addition to CFS related dysautonomic stuff!

 

[zzz]

@zzz I get the first part re: EBV triggering ME and causing dysfunctions of the hypothalamus but not sure what down-regulation of the HPA axis means (even though I have heard the term a lot.)

Wikipedia has a nice summary of the normal functioning of the hypothalamic-pituitary-adrenal axis:

The key elements of the HPA axis are:

• The paraventricular nucleus of the hypothalamus, which contains neuroendocrine neurons that synthesize and secrete vasopressin and corticotropin-releasing hormone (CRH). These two peptides regulate:
  • The anterior lobe of the pituitary gland. In particular, CRH and vasopressin stimulate the secretion of adrenocorticotropic hormone (ACTH), once known as corticotropin. ACTH in turn acts on:
  • the adrenal cortex, which produces glucocorticoid hormones (mainly cortisol in humans) in response to stimulation by ACTH. Glucocorticoids in turn act back on the hypothalamus and pituitary (to suppress CRH and ACTH production) in a negative feedback cycle.

When the HPA axis is down-regulated, the production of many or all of these hormones is lower. Starting from the top, a lower vasopressin means that less water is retained in the body, which can lead to lower blood volume, and there is less constriction of blood vessels, which leads to lower blood pressure. When CRH is lower, then ACTH is lower, and cortisol production is lower. When cortisol is low, normally this should cause a rise in CRH levels, according to the negative feedback loop described. However, both CRH and cortisol are typically low in people with ME/CFS.

You can find more information about the HPA axis in this article.

I was very happy to learn there was not a separate cardiac issue in addition to CFS related dysautonomic stuff!

So are we!

 

[Gingergrrl]

I wanted to add a quick update that starting tomorrow I will be increasing my Famvir dose to 500 mg 3x/day (instead of 2x/day.)

I also had a very interesting discovery that when I stopped the beta blocker (Atenolol) as instructed for the exercise echo, my shortness of breath actually improved instead of getting worse!!! I'd been taking the beta blocker since Jan 2013 for tachycardia (first Metoprolol and then Atenolol) and there were times the tachycardia was so bad that I had no choice. But recently, I'd been having shortness of breath in the absence of tachycardia which prompted me having the exercise echo.

I spoke to my cardiologist & CFS doctor and although both did not necessarily think the BB was causing my shortness of breath, both felt it would be okay to take a break from it and observe what happens. I take tiny dose in the morning and for several months it had been a PRN med (vs. every day) so I was not scared to stop it. Well, I have now been off of it for three days and my shortness of breath is much better! I am still taking Florinef and all the salt/electrolyte tablets. If my tachycardia gets bad again (which so far it hasn't) then I will try Atenolol again to see if the shortness of breath returns.

My CFS doctor said there is another beta blocker that I can try instead but he first wants to do a blood test for catecholamines (i.e. epinephrine, norepinephrine, etc.) He is the first doctor to ever suggest this and he said if the levels are high that could be part of my tachycardia and POTS. I just did the blood work today (for the Famvir labs and the CP and Parvo that I needed to repeat) so will do the other stuff next time.

Has anyone else had shortness of breath from a beta blocker?

 

[zzz]

Shortness of breath (dyspnea) is a known side effect of beta blockers. It happens because the beta blockers stop the action of epinephrine and norepinephrine in your lungs. Some beta blockers are more cardio-selective than others, and therefore cause fewer side effects. Atenolol is fairly cardio-selective. Betaxolol is more cardio-selective than Atenolol, but bisoprolol is far more cardio-selective than any other beta blocker. Your doctor will know the pros and cons of each of these for your condition.

The term "cardio-selective" is used simply because beta blockers are typically used for cardiovascular problems. A beta blocker that is more cardio-selective simply has a greater affinity for beta(1) receptors, which is what you want.

Dyspnea is quite common in ME; it's listed in the CCC. Dr. Jay Goldstein saw low norepinephrine levels in a very large proportion of his patients; this could lead to a tendency to dyspnea. If you have low norepinephrine levels and then add a beta blocker, symptoms of dyspnea are not surprising.

My CFS doctor said there is another beta blocker that I can try instead but he first wants to do a blood test for catecholamines (i.e. epinephrine, norepinephrine, etc.) He is the first doctor to ever suggest this and he said if the levels are high that could be part of my tachycardia and POTS.

This will be very interesting; your doctor may be surprised by the test results. I think your tachycardia and POTS are more likely due to low blood volume.

If you drink a lot of water and take a salt tablet with it, does your POTS temporarily improve? If so, that's a sign that the cause of the POTS is low blood volume.

 

[Valentijn]

@Gingergrrl - Beta blockers are used to prevent tachycardia, but that can be a REALLY bad idea if the tachycardia is present to help you cope with another problem. If you have hypotension or low pulse pressure, then little blood (and oxygen) is pushed around with each heart beat. The heart rate might then speed up to ensure enough oxygen is getting to your brain, and in that case it's a pretty bad idea to slow down the heart rate.

I think your doc is doing exactly the right thing in testing for catecholamine levels Have you a had real Tilt Table Test, or the "poor man's" version?

 

[xchocoholic]

Hi @Gingergrrl.

If I'm remembering this correctly, you've changed your diet recently to exclude gluten, dairy, etc.

Did your ND tell you that you'd need to re-evaluate your meds and supplements because your body will be returning to a healthier state ? The timing is individual.

Reduction or elimination of certain meds or supps needs to be slow.
It took me 4 months to completely eliminate Klonopin after 2-3 years of being on the elimination diet. It was knocking me out during the day. I'm back on it for myoclonus because that symptom keeps coming back but I was off it for 4 years. It's no where near as bad as it was prior to 2005 tho.

We see this commonly in the gf community. I have to keep reminding myself of this. I've never kept up with those with other intolerances to know their results.

So far I haven't seen anyone who knows exactly how much anyone can heal via diet. But most of the celiacs I know who were very sick prior to going gf are as shocked as I was by how many of our symptoms were related to our diet. From what I've seen multiple intolerances are common in celiacs too. Of course non celiac gluten sensitivity can be just as damaging.

Tc ... x

 

[AndyPandy]

@xchocoholic that's good to know about the possible effects of dietary change on meds. Thanks.

 

[Gingergrrl]

Shortness of breath (dyspnea) is a known side effect of beta blockers. It happens because the beta blockers stop the action of epinephrine and norepinephrine in your lungs. Some beta blockers are more cardio-selective than others, and therefore cause fewer side effects. Atenolol is fairly cardio-selective. Betaxolol is more cardio-selective than Atenolol, but bisoprolol is far more cardio-selective than any other beta blocker. Your doctor will know the pros and cons of each of these for your condition.

The term "cardio-selective" is used simply because beta blockers are typically used for cardiovascular problems. A beta blocker that is more cardio-selective simply has a greater affinity for beta(1) receptors, which is what you want.

Dyspnea is quite common in ME; it's listed in the CCC. Dr. Jay Goldstein saw low norepinephrine levels in a very large proportion of his patients; this could lead to a tendency to dyspnea. If you have low norepinephrine levels and then add a beta blocker, symptoms of dyspnea are not surprising. This will be very interesting; your doctor may be surprised by the test results. I think your tachycardia and POTS are more likely due to low blood volume.

If you drink a lot of water and take a salt tablet with it, does your POTS temporarily improve? If so, that's a sign that the cause of the POTS is low blood volume.

@zzz Thank you and prior to doing research a few nights ago, I didn't realize that the beta blocker was causing or adding to my shortness of breath. It was only when I stopped the BB for the treadmill test that I realized that evening that my SOB was better! I knew that Atenolol was cardio-selective which is one of the reasons it was chosen over others. I've not heard of the two that you mentioned but when I googled them, one of them seemed to be more focused on glaucoma?

I'd had three days of no Beta Blocker, much improved SOB, and no tachycardia. However last night I had an episode of tachycardia (which happens during REM sleep which is why it was initially labeled IST vs. POTS.) Then every time I stood up last night my HR would jump from the 60's or 70's to 115 (which is the POTS part.) I was disappointed b/c I had thought maybe the Famvir was enough to suppress the viral trigger of the tachycardia but I guess that was naive on my part after only three weeks. So I ended up taking extra electrolytes and 1/4 Atenolol (I had been taking 1/2 Atenolol) and the Tachycardia stopped. I have not taken any Atenolol today and so far, so good.

My autonomic symptoms are very erratic and at their worst, my HR would go into the 170's during REM sleep and in the 150's every time I stood up. The Atenolol completely stopped this (Thank God!) but I guess caused me shortness of breath in the process. I've never had catecholamines tested and my CFS doctor was not sure if they will be high but he felt the info would be helpful. He told me it is okay to take the BB as a PRN again (or to resume daily if needed) and I will be seeing that autonomic cardiologist for a one-time consult next Fri. I'm hoping he can give me feedback how to proceed as I know my symptoms will be atypical to him (and I was already alerted by my regular cardiologist that he does not know about CFS.)

You asked if drinking a lot of water, salt tablets (and in my case Florinef) help the POTS and I really am not sure. I had trouble tolerating Florinef and only take 1/4 tablet. I know my doses must sound incredibly low but my body processes things differently and I do not stand a chance when I take meds at a high dose. When I feel shaky & jittery which I did last night with the tachycardia, the electrolytes & salt do help.

@Gingergrrl - Beta blockers are used to prevent tachycardia, but that can be a REALLY bad idea if the tachycardia is present to help you cope with another problem. If you have hypotension or low pulse pressure, then little blood (and oxygen) is pushed around with each heart beat. The heart rate might then speed up to ensure enough oxygen is getting to your brain, and in that case it's a pretty bad idea to slow down the heart rate. I think your doc is doing exactly the right thing in testing for catecholamine levels Have you a had real Tilt Table Test, or the "poor man's" version?

@Valentijn I initially worried about the same thing (what if the Tachycardia was serving some purpose for my body and suppressing it was bad?) But at it's worst, my HR was going into the 150's to the 170's throughout the day and night and I was unable to function. It was happening at work (at the time I was still working- not now) and it was unbearable and the only solution offered by my cardiologist was a beta blocker which helped tremendously (and I only took 1/2 of the lowest dose pill.) My goal is to get off the BB and I am hoping with the increased Famvir, the autonomic stuff will improve.

I have never had a real TTT b/c my cardiologist captured the episodes of IST and POTS both in her office and when I wore a Zio Patch monitor (three separate times over a year and a half.) She said the TTT would not add anything to what she had already witnessed and it was a very difficult test that could make me sicker and she didn't want to put me through it since she already knew I had autonomic dysfunction, IST & POTS symptoms. Do you think there would still be some benefit?

 

[Sushi]

@Gingergrrl

How is your BP? Did your cardio ever consider a calcium channel blocker rather than a beta blocker? A calcium channel blocker will lower both BP and HR, so wouldn't be a good idea if you have low BP--my guess anyway!

Sushi