Due to living with Lyme Disease, have... - Living with Lyme ...

Living with Lyme Disease UK

Due to living with Lyme Disease, have you had any of the following?

Mdaisy profile imageMdaisyAdministrator7 Voters

Please select all that apply:

7 Replies
Elspeth profile image
Elspeth

Hi

It's my 22 year old daughter who has Lyme's. She is also suffering from extreme tiredness, confusion and dizzyness when she stands up. She is currently sleeping all except about 5 hours a day and when she gets tired she shakes.

Over the last few days she has also been itchy saying she has itchy bones!

I have no idea what that is about!

She got Lyme's disease last summer and we thought she was a lot better, she even went back to work full time and then one day a month ago she began shaking at work and hasn't been well since. Her boss fired her!

Does anyone have any advice they could give me for her?

Mdaisy profile image
MdaisyAdministrator in reply to Elspeth

Hello Elspeth

I am sincerely sorry to hear that your daughter has had ongoing symptoms of Lyme after being bitten last summer. I know the Founder of Phones4u is trying to get the government to do more research into Lyme & Coninfections. I believe the bacteria (spirochete/Borrelia) is becoming resistant to current advised (by NHS) treatment duration and the antibiotic Doxycycline, as I hear so many people having symptoms after ‘treatment’.

I would say personally that I feel the NHS is not able (it would seem) to help those with Chronic Lyme and seem to base their help on helping symptom control with medication. Many in the medical profession also deny the existence of Chronic Lyme.

However, due to this many in Lyme Community use a number of alternative therapies to help symptom control and anything to boost the immune system. I am unaware how much money you have but I use RIFE, Infrared Sauna (see posts on my profile), Nutribullet smoothies daily plus some people say the Vitamin C Protocol helps too ( I am looking into Lipsomal Vitamin C) . You can google Vitamin C for Lyme to read more about it.

I was kindly advised to RIFE by a person in the Lyme community and I am forever grateful as slowly I am improving. I was sceptical I really was but loads of anecdotal recommendations despite no research. The machine has definitely helped me but does cost £706. The principle is that the frequencies shake the bacteria to kill them (don’t think antibiotics are getting past the exoskeleton now either) and then I use Infrared or Epsom Salt baths to detox the ‘die off’ toxins. It does seem to purge so you do feel worse before feeling better just in case you want to try RIFE . Also, a tip if you try take it slow I did too many programs at first and was really ill.

Happy for you to PM me anytime and I willing answer any questions as best I can. Or if I don’t know I can ask around to find the answer.🙂

I truly hope some of my reply helps you and your daughter. 🤞🏻

All the best

Emma x

Thyroiddown profile image
Thyroiddown in reply to Mdaisy

Hi Emma, could you please tell us which rife machine makes and models that are most popular?

Mdaisy profile image
MdaisyAdministrator in reply to Thyroiddown

PM’d you :)

Thyroiddown profile image
Thyroiddown

Other is spinal neuropathy, bells palsy, bowel paralysis ,

Mdaisy profile image
MdaisyAdministrator in reply to Thyroiddown

Thank You for commenting.

liamin profile image
liamin

I don't know which co-infections I have, guidelines here are very strict, so you won't get more than 2 weeks of doxy after diagnosis. My GP really believes that should do the trick. I had researched, myself, and managed to get 8 weeks of doxy, and felt much better for about a year. The symptoms returned with a "bang" after 2 years and I got 2 more weeks from her. I was afraid that would not be enough and went to a doctor in a different country and got 6 more weeks. That really helped. I'm here hoping to find out what the regular therapy is in the UK, comparing results and hoping to find help to feel better. Utter fatigue is the worst part, plus all sorts of weird symptoms like floaters in my eyes in the morning, itching cartiledge in nose and ears, pain in joints, weakness in other joints, and I feel like my new anxiety has to do with Lyme as well. Also I would like to know how I can recognize it when it's only herxheimer's that I'm experiencing, and what more I can do about that - I do use detox capsules.

I hope this is what you mean by your asking for comments, if not, please let me know!