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Posted 7/14/2011 7:52 AM (GMT 0)
Hi folks,

I had left the forum due to feeling one of my opinions was entirely unwelcomed. However, for the sake of all the newbies, I thought it would be nice for me to post a happy-news update.

I am  now so well that I am working full-time, getting back into socialising and even spent the weekend camping in the rain at a music festival with few problems. Still a bit overly tired, but I feel like an entirely new person. I have regained aspects of my personality that I didn't even realise had gone - more enthusiasm, singing in the shower again, laughing much much more.

Here is my illness/treatment summary in case it helps anyone:

Most troubling symptoms:

- Fatigue at least three years

- Headaches

- Dizziness

- Numb right hand side of body

- Menstrual irregularity

- Depression, anxiety, paranoia

- Urinary incontinance

- Shortness of breath

- Heart palpitations / chest pain

Tests over last few years

- General immune system - ok

- Hormone levels - ok on single spot check

- Blood pressure - low

- Body temperature - very low

- Malaria - not present

- Liver test - ok

- Heart scan - ok

- Lung tests - ok

Broad spectrum antibiotics given once for a few days, no affect.

Was told was probably just working too hard etc, and needed to rest more.

Dec 2010 - Got much iller, couldn't walk, sometimes couldn't even stand

Couple trips to hospital - no outcome

Treated with steroids for 5 days - got much much worse - fits, massive pain

Lyme disease mentioned, GP treated for one month with 200mg Doxy per day. Almost instantly felt better (herx only for few hours for first three days).

Saw Lyme specialist, diagnosis confirmed due to symptomes/reaction to antibiotics (NHS test negative, but wouldn't let me see bands)

200mg Doxy twice a day for 3 months, but caused too many problems with sun

Changed to Cefuroxime (250mg twice a day for 4 days), Azithromycin (500mg twice a day for 4 days) and Tinidazole (500mg twice a day for remining 3 days) for three months (Azithromycin added in when treatment didn't seem to be working well). Currently 2 months into this treatment

Supporting treatment

- Balanced diet, including quite a bit of sugar to keep my evergy levels high to fight the lyme, multivitamin and probiotics

- Lots of drinking water

- Warm bath every night, with body brushing to stimulate blood flow

- As much exercise as I can manage (walking, small amount of jogging now more able)

- Paracetamol when needed

- Getting out of house, back to work and out with friends as soon as possible

Lessons learned

- If you aren't getting better, the treatment isn't working

- Herx only occurs in the first few days, if it continues it isn't a herx, it's the meds not working/making things worse

- Lyme can be treated successfully with only oral antibiotics

- Life with little Lyme is just absolutely amazing!

I am not quite there yet, but wanted to share my story to make sure everyone understands that antibiotics can, and do, work for Lyme disease treatment.  

Good luck to everyone for their own treatment choices,

Kirsty

Posted 7/14/2011 10:24 AM (GMT 0)
Great news Kirsty!

Hope your total recovery is just around the corner.
Posted 7/14/2011 11:10 AM (GMT 0)
Ditto on the great news !!!!

Ceftin and Azith worked wonders for me too !!!!
Posted 7/14/2011 12:51 PM (GMT 0)
thx Kirsty...good news! I am on Ceftin/Biaxin now but alternate every 2 weeks with Ceftin/Flagyl. I am hoping for similar results!
Posted 7/14/2011 1:32 PM (GMT 0)
Glad to hear you are working. Goes to show you how different everyone reactions to different treatments. Hope to continue to enjoy this precious life.
Posted 7/14/2011 4:35 PM (GMT 0)
Thanks for all your replies :)

Jessica - good question... I have probably had about five tick bites I know about in my life. I work outdoors, but am very careful with what I wear, and how I check for ticks, so they are few and far between.

Not too sure when it all started. I had glandular fever as a student in 2002, and got progressively better over the course of a year. Was left with a little less energy but pretty well. A few years later I started getting really tired, but assumed it was just some chronic fatigue left over from having lyme combined with starting work after university. But, it just got worse and worse over the years, with all the new symptoms adding on.

Looking back, I suspect it may have been a tick I remember getting in 2005... which would make it 6 years! According to family and friends I am more like I used to be in the past now, laughing more, bouncy and generally happier. It is so exciting... In fact, it is exciting even being able to feel excited...

I really hope you all get there too, keep up the antibiotics - they are a modern wonder.

Kirsty
Posted 7/14/2011 4:41 PM (GMT 0)
HI Kirsty!
Congratulations on feeling better!! It is a grand thing when it happens, that's for sure!! Here's hoping that your full recovery isn't very far away!
Posted 7/14/2011 9:57 PM (GMT 0)
Glad to hear things are going well Kirsty.

One thing that struck me by reading your post is that you take quite a bit of sugar. My LLMD put me on a very restrictive diet and sugar is forbidden for me.
Posted 7/15/2011 12:53 AM (GMT 0)
Kirsty - what is Paracetamol?
Posted 7/15/2011 8:25 AM (GMT 0)
 

Congratulations Kirsty!

Miss C--I have also heard of the low amylose diet being helpful for Lyme--it's along the lines of what you're talking about with low sugar.

 

Posted 7/15/2011 10:59 AM (GMT 0)
So glad to hear that you are feeling better!!  Hope it continues for you!!  Good luck.
Posted 7/15/2011 7:04 PM (GMT 0)
One of the main problems with lyme disease is that when treated, the bateria have a tendency to turn into their cyct form for protection. They use this as a defence mechanism in times of 'stess', meaning you can appear to be disease free, but relapse later when the bacteria come out of 'hiding'. Adding sugar to the diet encourages lyme cysts to reactivate because conditions suddenly appear to be ideal for their growth. Therefore, sugar can promote the growth of lyme as your LLMD says. However, because the reactivated bacteria are no longer in cycst form they are much more vulnerable to antibiotic treatment, so are killed when they come out of cyst form. Indeed, there is much more recent evidence to show how sugar can boost the efficiency of antibiotics. Google antibiotics and sugar and you can find out more. This is before taking into account the higher energy requirements of being so ill. (NB - I studied zoology and biology, so have a very good understanding of baterial life cycles etc).

Of course, if you are on a poor or ineffective treatment sugar will make you worse as nothing will be adequatly killing the bugs which come out of cyst form. And, antibiotics can make you prone to yeast infections, but I luckily haven't had any of this.

Regarding the herx issue, I think that many people may mistake a herx reaction for a drug intolerance or treatment not working. I had a herx in the first few days only of Doxy, but I had a similar reaction to my second lot of drugs initially, which didn't go away or get better. When I added in the third antibiotic this stopped instantly. Turned out it wasn't a herx, it was the drugs not working and me relapsing. I couldn't have told the difference, and might have carried on regardless for months in the thought it was a herx. Perhaps some people get longer herx reactions, but they should certainly reduce in frequency over time as bacterial numbers reduce. I gather some women can have a few herx cycles linking with their period due to higher body temperature at this time killing off more bacteria, but again these would get less severe each month. It's only my view, and happy for others to disagree, but in my opinion if you keep herxing this implies the munber of bateria are staying constant, not decreasing, hence treatment can't be working properly or you are misinterpreting the symptoms. I don't know anyone who has been cured of lyme who has had extended herx reactions for months... Feel free to let me know if you have.

Thanks folks :o)
Posted 7/16/2011 1:47 AM (GMT 0)
Paracetamol is British English for Tylenol.

And if ever I needed to hear that sugar is (possibly) OK for me.... cookies time!
Posted 7/16/2011 9:03 AM (GMT 0)
Thanks CycleVancouver - I forgot to answer that bit :o)
Posted 7/16/2011 2:06 PM (GMT 0)
Miss C - if you have a rash or breathing problems it is likely to be an allergic reaction so go to hospital immediately. You can also be intolerant to specific antibiotics, or have bad side effects. There are different common side effects for each antibiotic - check the instructions. Generally it will be quite different from how you have been feeling already. For example, there is one antibiotic (can't remember the name) I was given a few years ago that made me feel very sick and also gave me such bad stomach cramps that I couldn't stand! I wasn't actually allergic, just got exceptionally bad side effects.

Individual bacteria do naturally die off through old age (shame they are also very good at reproducing in the meantime). Unfortuately when these bacteria die they produce toxins, and these toxins are one of the reasons that lyme makes us so ill. Anything that increases die-off of the bateria (exercise, increased body temperature, antiobiotics etc) has the potential to increase these toxins and make you feel a little worse. However, a true herx reaction only occurs when die-off is exceptionally high. These reactions are likely to be short-lived, as the number of individual bacterial killed will reduce significantly each day. A herx reaction is generally your current lyme symptoms but much much worse as you have more toxins in the blood.

So, I would say:
Allergic reaction - generally very quick, symptoms usually different from your normal lyme symptoms
Intollerance/side-effects - new symptoms or symptoms that do not progressively get better
Herx - generally very fast, symptoms similar to normal lyme symptoms

Hope this helps, feel free to email me :o)
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