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my famvir trial

maryb

iherb code TAK122
Messages
3,602
Location
UK
@SDSue I am nolonger taking famvir sorry. Unfortunately for me it didn't seem to be the right route. Regarding the "crappy, indifferent, better" scale, I have found that extremely useful for myself and to put in front of a doctor. What I now do is, on a a4 year calendar, I mark a crappy day with a red highlighter, an indifferent day with blue and a better day with yellow. I also put a comment against a date when I change something. Then over the course of time you have a VERY easy visual aid of how your year has going and you can see if you are getting worse or better with a quick glance which is easily portrayed to someone else. I have been doing this for 2 years now and it is very simple and very helpful

How useful, simple but brilliant Clive.
 

clive powney

Senior Member
Messages
206
Location
coventry
I have gone down the route outlined in the book "stop the thyroid madness" advice is pretty much all on line. My thyroid tests (tsh) were always towards the top end of the ok range , so I got all of my testing done in conjunction with the requirements of that outlined in the book, thyroid, iron,b12 adrenals etc. They all came back in line with what the book had said they would. I am now on a regime of Hydrocortisone (35mg per day split into 4 doses in line with circadian rhythm ), T3 -- (75mg per day split into 4), 160 mEq potassium sustained release, 1.2g magnesium, vitamin B complex, trace minerals, vitamin B12 and 5000iu vitamin. I had a good summer, much better than the last few years.
My anxiety has disappeared nearly.
I have no more panic attacks
I have many less days whereby I am sleeping most of the day (reduction from average of 7 per month to around 1 per month)
I do though have less "better" days (reduced from 5 per month to around 2 or 3)
I have more interest in stuff
My wife says she see a difference in me.
I am by no means "better", but am still struggling to get my bloods in line with where they should be and am only 50% of the way down the treatment path, so there is a lot of room for improvement.
I will try and scan my last 2 years calendar as it may be of use for others to try the same and you will see how effective it can be on a general, how are things going scale.
 

clive powney

Senior Member
Messages
206
Location
coventry
I have attached my file below. The first year 2013 - better days were in green and not yellow. You can see my health was up and down much more than it is now with more green/yellow days but many more red days also. Since I started this treatment (march 2014) - my health has stabilised - (many more blue days) and I have only had 14 bad days in 9 months - I did go nearly 2 months without a bad day through the summer and I believe that if I hadn't had a nasty horsefly bite in June (bad infection) I wouldn't have had 1 bad day in 3 months of june, july and august.
Any days that do not look highlighted are good days and in yellow, but the highlighter I used hasn't been picked up by the scanner very well
 

Attachments

  • 2013 to 2014 .pdf
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SDSue

Southeast
Messages
1,066
I have gone down the route outlined in the book "stop the thyroid madness" advice is pretty much all on line. My thyroid tests (tsh) were always towards the top end of the ok range , so I got all of my testing done in conjunction with the requirements of that outlined in the book, thyroid, iron,b12 adrenals etc. They all came back in line with what the book had said they would. I am now on a regime of Hydrocortisone (35mg per day split into 4 doses in line with circadian rhythm ), T3 -- (75mg per day split into 4), 160 mEq potassium sustained release, 1.2g magnesium, vitamin B complex, trace minerals, vitamin B12 and 5000iu vitamin. I had a good summer, much better than the last few years.
Thanks for sharing your calendar. I like the reduced amount of red in 2014 and love that you had a good summer!

Your thyroid info is of great interest to me. I have the book STTM (waste of money - as you say, most is available online) I am currently only on 30 ug of T3 extended release, and am raising it by 5 ug every week (using Cytomel to titrate), as per doctor's advice. I know STTM doesn't like the extended release, so am thinking about switching to Cytomel alone.

I have a few questions if you don't mind.

* Was there a tipping point for you, when you knew you finally had enough T3? (I see you went up, then back down for a while before raising again. Can you describe that a bit better?)
* Did you raise your dose until you had side effects and then back down, or did you go strictly by labs?
* Why so much potassium? Even when I was on Florinef for POTS, I only took 20 mEq.

Thanks so much!
 

clive powney

Senior Member
Messages
206
Location
coventry
You are right about the extended release t3 - sttm doesn't like it at all.
"* Was there a tipping point for you, when you knew you finally had enough T3? (I see you went up, then back down for a while before raising again. Can you describe that a bit better?)"
I am still titrating up on t3. I went back down again because of some side effects as I believe I was going ahead too fast. The advice is to only move up when you have 5 consecutive days of stable temperature taken 3 hours after waking + 3 hours and + a further 3 hours. Temperature averages for each day must not be more than 0.1C different.
This totally dictates if I move up or not - nothing to do with any lab work.
"* Why so much potassium? Even when I was on Florinef for POTS, I only took 20 mEq. "
The reason I take so much potassium (even this is not enough as my potassium is still only at 3.7 - needs to be around 4.3) is the hydrocortisone. Apparently it eats up potassium and some people need up to 240mEq.
If you are doing this sort of protocol I suggest that you post on a yahoo patient group through which I get all of my info.
Natural Thyroid Hormone ADRENALS
 

SDSue

Southeast
Messages
1,066
Thanks, @clive powney. Good information to have. Thyroid is a tough one, but i'm determined to get it right. I hadn't heard the 5-day, 0.1C rule before, but it makes sense.

Are we basically waiting out stabilization of the natural rise in temp as T3 gets into the cells?

I will look for the yahoo group so I don't make you crazy with my questions! Thanks and best wishes in your journey! Keep us apprised on any improvements, please?
 

boohealth

Senior Member
Messages
243
Location
south
@SDSue I am nolonger taking famvir sorry. Unfortunately for me it didn't seem to be the right route. Regarding the "crappy, indifferent, better" scale, I have found that extremely useful for myself and to put in front of a doctor. What I now do is, on a a4 year calendar, I mark a crappy day with a red highlighter, an indifferent day with blue and a better day with yellow. I also put a comment against a date when I change something. Then over the course of time you have a VERY easy visual aid of how your year has going and you can see if you are getting worse or better with a quick glance which is easily portrayed to someone else. I have been doing this for 2 years now and it is very simple and very helpful

Clive, you should make an app! :) Seroiusly, what a simple and excellent method. We all have our crappy, indifferent and better days. I might myself mark them crappy, regular and better. I suppose there could be a best day too. Either way, whatever your own crappy indifferent and better days are (your crappy may be someone else's better, and your better might be another's crappy!) it might also help you track responses to environmental or food changes, or seasonal changes, pollens etc.
 

Gingergrrl

Senior Member
Messages
16,171
@SDSue I am nolonger taking famvir sorry. Unfortunately for me it didn't seem to be the right route. Regarding the "crappy, indifferent, better" scale, I have found that extremely useful for myself and to put in front of a doctor. What I now do is, on a 4 year calendar, I mark a crappy day with a red highlighter, an indifferent day with blue and a better day with yellow. I also put a comment against a date when I change something. Then over the course of time you have a VERY easy visual aid of how your year has going and you can see if you are getting worse or better with a quick glance which is easily portrayed to someone else. I have been doing this for 2 years now and it is very simple and very helpful

@clive powney First, I am sorry to hear that Famvir didn't work for you. I was wondering how long you took it and at what dose and if it was for EBV? I apologize I did not get a chance to read this entire thread.

Also, your system of color coding each day on the calendar for crappy, indifferent and good days is absolutely brilliant! I have all kinds of systems but this one is so simple and yet I have never done it! Thank you for the great idea.
 

clive powney

Senior Member
Messages
206
Location
coventry

Heaps,

@clive powney First, I am sorry to hear that Famvir didn't work for you. I was wondering how long you took it and at what dose and if it was for EBV? I apologize I did not get a chance to read this entire thread.

Also, your system of color coding each day on the calendar for crappy, indifferent and good days is absolutely brilliant! I have all kinds of systems but this one is so simple and yet I have never done it! Thank you for the great idea.
I took the famvir for around 9 months and it was in response to the fact that I had shingles when I first got ill. It was an attempt at trying something that had helped others and had a possible link to maybe what made me ill.
 

clive powney

Senior Member
Messages
206
Location
coventry
@clive powney hi mate.

Have u come across any helpful treatments since then or any more evidence of clues to whats happening like blood tests. I find the subsets of people is interesting, always good to pick up a few tips to pass along to others in a similar sub set.

So i hope your doing ok.
Tried to post this before but hit enter by mistake before I posted.

The evidence I have thus far is : adrenal function 4 x saliva test came back as low throughout the day
Thyroid t3 - borderline low
TSH - Borderline high
rt3 - borderline high
B12 LOW
ferritin - high but in range
iron saturation low but in range
vitamin d has been low
testosterone SHGB very high
testosterone borderline high
previously tested positive for lyme disease
autonomic nervous system dysfunction
low cell magnesium
ATP dysfunction
plus some other stuff that I cant think of at the moment
 

drob31

Senior Member
Messages
1,487
Clive I think my symptoms are very close to yours.

The difference with me is that my cortisol saliva results were always high.

I did a serum test and my cortisol was low, then I started with T3, and the next cortisol serum was off the charts. Clearly my cortisol is high or all over the place.

I'm on slow release t3, and I have given it a while to work, but it just doesn't seem to work. Either that or it's using up to much cortisol. I'm on 20 mg slow release t3 2x a day.

I'm thinking about switching to cytomel 4x a day, and double checking cortisol to see what it's doing. I wonder if simply replacing it would keep levels more stable through the day.

my RBC magnesium was a little low.

Before my big crash my TSH was high. After my big crash it was low and my free t3 was low. Then it started climbing back up but RT3 raised as the t3 increased. I had good days and bad days as well.

I really believe the PVN is getting negative feedback and is sending the wrong signals for hormone production. This could be related to inflammation or infection. In your case it's Lyme causing the PVN to go haywire, I would bet.
 

clive powney

Senior Member
Messages
206
Location
coventry
If it is Lyme then I don't know what I can do to resolve it. I was tested positive then put on a variety of ABX regimes over the course of 2 years and had no improvement. This was done at the Breakspear clinic in Hemel Hemstead
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
I didn't know you tested positive for Lyme as well Clive, did you have the Igenex test, how positive was it, just reading about another poster who tested positive for Lyme at B/spear and then they said later maybe she didn't have it after all!!!!
 

drob31

Senior Member
Messages
1,487
If it is Lyme then I don't know what I can do to resolve it. I was tested positive then put on a variety of ABX regimes over the course of 2 years and had no improvement. This was done at the Breakspear clinic in Hemel Hemstead

I don't have much knowledge about Lyme other than what I've read about treating it with certain ABX, and the under the skin documentary about it. Do you have neurological symptoms? It could be a false positive like maryb is suggesting, especially if you are using t3 and cortisol and that is helping improve allot.
 

clive powney

Senior Member
Messages
206
Location
coventry
I didn't know you tested positive for Lyme as well Clive, did you have the Igenex test, how positive was it, just reading about another poster who tested positive for Lyme at B/spear and then they said later maybe she didn't have it after all!!!!
Yep I was tested positive through Igenex and somewhere in Germany as well. Don't know how accurate the tests are though?? Wonder how B/spear decided that the lady you mentioned maybe didn't have Lyme?
 

clive powney

Senior Member
Messages
206
Location
coventry
I don't have much knowledge about Lyme other than what I've read about treating it with certain ABX, and the under the skin documentary about it. Do you have neurological symptoms? It could be a false positive like maryb is suggesting, especially if you are using t3 and cortisol and that is helping improve allot.
I do have brain fog and difficulty finding words at times. The cortisol is definitely helping as regards to the anxiety and I am definitely sleeping less often in the day. I am struggling with exercise as all I do is housework and walk every now and again. I used to play football, squash, golf and was VERY energetic, perhaps too much so!! I am hoping my testosterone results might highlight a need for supplementation which might help with this though.