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Interview with Anna Worthington on her experiences with Guaifenesin

By Kathy Longley BSc

Anna is one of the leaders of the UK FMS Guai Support Group and worked with others to organise the conference day on June 12th. She kindly agreed to be interviewed on her experiences with the guaifenesin protocol. Anna started on guai in March 2002 and her dose is 600mg a day.

 

1.       How did you first hear about the guaifenesin protocol?

Devin Starlanyl’s website led me to the UK FMS GUAI group. I was researching FMS, having been originally diagnosed with ME/CFS. Some years later an osteopath performed the tender point exam on me and said I had “nearly” enough tender points for a diagnosis of fibromyalgia. All my reading had already led me to believe that these are two manifestations of the same underlying condition, so when I read Dr St. Amand’s theory, it all tied in.

2.  What inspired you to follow this treatment plan?

Initially, reading the testimonials of people on the UK FMS GUAI website. I then asked for input from people in the emailing group. The emails I had seen had focussed more on pain and although I was keen to try guai if it helped pain alone, my worst symptoms were fatigue and immune problems/viral-type symptoms causing constant infections, sore throat and tender glands. I got several positive emails back to say guai had cleared these symptoms too. I then really began to believe that guai appeared to be working on the root cause of all symptoms. Getting mapped confirmed that my worst areas were where I had very bad lumps (shoulders). My doctor had already remarked several times that my shoulders were solid.

3.  Did you consult your GP before beginning treatment?

No, I had not been to see my GP for a long time, since she said that she believed I hadn’t returned to work due to lack of confidence.  I had been seeing a private doctor for 6 years prior to starting guai and I printed all the information from the website for him. He thought the theory looked very plausible and has been very supportive. He now plans to train up with Dr St Amand.

4. Where did you purchase guaifenesin? 

Originally I purchased guai from the Garden Pharmacy in London. This source is unfortunately no longer available so I am about to switch to compounded guaifenesin (private prescription needed) from Marina Del Rey pharmacy in LA.

5. What do you consider your improvements to be?

Immune system – I’ve had no infections for two and a half years. I have had colds all my life and when chronically sick got a bug every few weeks, which would flare up my pain and fatigue.

Sleep – I now sleep through every night. I have periods of only needing 7 hours sleep a night. When I am cycling I experience more fatigue and still sleep up to 9 hours.

Energy – overall a huge improvement, compared with how I was. Pre-guai I had regular periods of being bed bound for weeks at a time. Even minor exertion, like phone calls or a little typing, could trigger a flare-up. I couldn’t cook, or do housework, work or drive and had been living with my parents for 6 years, since I “crashed”. I have now been living in my own house for a year. I am able to look after myself, cook, do light housework, work for hours on the PC (even on many “bad” days) and I am starting to have a social life again. This year, I have been able to successfully organise our guai conference, which was a huge amount of work and it only took me one day to recover!

IBS – I have had IBS (mainly cramps and constipation and wind) since childhood. I would have a flare-up whenever I had a general FMS flare-up. My IBS is manageable now. I just get odd cramps or occasional grumbles, especially in a heavy cycle.

Dizziness – I have had cycles of dizziness when clearing neck/shoulder deposits, but it is much milder now (just a slight feeling of imbalance at times).

Poisoned feeling – this has been gone for a long time.

Cold intolerance – much better, intolerance to heat has also gone.

Hay fever -much better, although the trees in London still get me, but anti-histamines actually work now! They never did before.

Sweating, flu-like cycles – gone.

6. What symptoms still remain?

I can get intense pain on cycling as I clear deeper deposits (quite different from the fluey aching I had before guai and in the early months). I “cycle” constantly as I am a low-dose fast responder (cycle on 600mg of guai). I still have spells of fatigue, although it has improved a lot this year. It no longer puts me in bed and I can do more in fatigue cycles. My main deposits on mapping are my upper back, some in my hips/lower back and I get the most pain in these areas, although I can get it anywhere. I can get sore throats/tender neck glands, but am getting this less now and milder. I have spells of vaginal cramps, which I only had pre-guai during my period (very badly then) but I know this is due to deep pelvic clearing. I know the heightened pain generally is due to the fact that I am clearing at least 6 times faster than I deposited.

I am also hypoglycaemic and need to follow Dr St. Amand’s low-carbohydrate diet; otherwise I get acute symptoms (palpitations, insomnia nightmares etc). I can be more liberal with carbs now though.

7. How long was it before you noticed these improvements?

I noticed softening in my neck muscles within a few days, although they tightened up whenever I went into another cycle. My mapper has felt lots of clearing and softening on each mapping.

My immune system improved instantly. It is fantastic now! My sleep started improving straight away and then cycled through better and worse periods, but it has been very good for 3 or 4 months now. My periods of being bedridden reduced straight away from weeks at a time to a few days every few months for the first year on guai. I have still had significant cycles of fatigue since then where I would need to rest for a day or so but not in bed. Now, when I have fatigue I can usually still do computer work, chores, often go out if I need to.

8. Has the treatment plan been difficult to follow?

Overall, I have never found the process worse than the severe illness I experienced before.  The pain can be tough, but I have been able to cope with over the counter painkillers and I can ignore pain, except if it keeps me awake, which is rare now, then I find neurofen can help. I am finding I don’t need to take painkillers much now though.

I didn’t find the protocol hard to get to grips with, but I am lucky not to get much brain fog. I found my dose straight away and have never blocked.

I have an excellent mapper, and I have found regular mappings very important for motivation. Even now when I feel so much improved, it is good to have that objective evidence of gradual clearing. I have a very supportive family, so I have been able to get both practical and emotional support. I have had the space for my reversal to take however long it takes. My family totally believe in the protocol, having seen the great improvements I’ve made. Like all of us, I get impatient because the process is gradual, but I am so happy with the improvement I have made and have complete belief that I will make a full recovery in time. I have observed that it is necessary to totally accept the protocol and do it as written (and for long enough) to achieve reversal.

My sister is taking guai too now, her FMS is mild and we picked it up with mapping. She has made great strides in 3 months. She takes the same dose as me and is hypoglycaemic too, so I believe Dr St. Amand is correct that it is all genetic. My maternal grandma was diagnosed with fibrositis in the 60’s too.

9. Were you tempted at anytime to give up?

No, never!  I know what the alternative is! It gave me such good improvements in energy, which was my worst problem, relatively quickly. I had also tried everything else and this was the only treatment with so many positive testimonials. Also, to me Dr St Amand’s theory about an energy deficit within cells made such sense.

I could feel my muscles starting to soften immediately, although the clearing process is gradual, with deeper deposits being pulled up. In addition, I know something is being cleared out of my urine. I used to get lots of big flakes in a heavy cycle. I get this less now, but my urine can be cloudy, strong smelling and burns at times. I never had this before guai. 

10. Have you ensured that all possible salicylates have been removed? Yes

11. What products are you now using?

Make-up

Shampoo

Moisturiser

Soap

Cleanser

L’Oreal Glam Shine lip gloss, Ruby and Millie eye shadow and face gloss Toni and Guy shampoo and conditioner E45 cream, Vaseline for lips Johnson’s PH 5.5 body wash Johnson’s PH 5.5 facial wash

 

 

12. Did you find this difficult to adjust to?

No. I was so sick before guai and had tried so many strict regimes, which didn’t help much, so changing a few products was no hardship.  There are actually lots of suitable products available in Boots at no extra expense. It is just a case of learning what to look for. The salicylate-free list helped a lot at first, but I picked up the process of checking quite quickly.

13. Has your GP recognised the change in your condition?

I have a new GP and I have written to her about my progress. She is very pleased. I intend to go and see her when I am ready to return to work.

14. Would you consider that you are now able to work part-time/full-time?

I can work part-time on a voluntary basis. Some days leading up to the conference I have been doing a full day’s work, working in the morning, shopping in the afternoon, then more work in the evening. There is a limit to how much computer work I can do still, due to shoulder lumps. As my cycles are still unpredictable (fatigue limits me the most), I can’t take on paid work yet, but I think I will be able to within 6 months or so.

15. Have you been part of a guaifenesin help group during your treatment program?

Yes, the UK FMS GUAI online group and I read post from the US online group too until recently.

16. How important has that support you have found there been to you?

Very important at the start and even now I find the progress reports very encouraging.  It is mostly me advising others now though!

17. Would you recommend this treatment program to other fibromyalgia sufferers?

Absolutely 100%. Guai has given me a life again and the prospect of being able to work, get married, have a family, all of which I was despairing of ever achieving pre-guai.

 
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