Arthritis and muscle weakness

[Joanne60]

My chronic ill health like so many was long 6 1/2 years.

It presented mainly as arthritis and muscle weakness that affected virtually every joint in my body and many muscles. Migrating over the first two years and then being chronic thereafter in so many joints lasting up to 2 years in any area. Four years from onset 5 GP's and 3 Rheumatologists later a chance course of Amoxycillin for a chest, throat and sinus infection resulted in significant improvements in my arthritis and muscle weakness, far greater than what I had noticed on the steroid treatment prescribed for PMR. Treatment ended symptoms deteriorated treatment restarted symptoms improved.

This led my GP to suspect Lyme Disease, I had attended the surgery at time of bites, bulls eye rashes and summer flu'. Blood tests were negative for Lyme hardly a surprise as they can miss 50% of cases and steroids and antibiotics can both skew the results. I read Burrascano Guidelines found in http://www.ilads.org/ so many of my symptoms and history slotted into place all supported on the records on GP's computer. GP read these guidelines and continued to treat me on Amoxycillin but a much higher dose 2x 500mg three times a day. What a difference and how much easier it was to gradually reduce the steroids.

GP was advised to stop antibiotics by the 'expert' at HPA but because of my obvious and visual improvements she continued and eventually I consulted with a doctor who specialises privately in Lyme Disease (LLMD) and he confirmed my GP's suspicions and gave a clinical diagnosis.

I was changed to Doxycycline the often recommended treatment for Lyme Disease but my response was not as good and symptoms continued to progress affecting all the little joints in fingers and toes. X rays of hands showed signs indicating RA, inflammation etc.

After 7 months I had a bad photosensitive reaction whilst on Doxycycline and went back onto Amoxycillin at that point I found that Doxycycline had infact helped other symptoms I had not associated with Lyme, such as constant sore throat, swallowing problems, chest, bladder weakness and niggling pain in gall bladder area (all experienced well before I started antibiotics so not an effect of treatment)

After some months GP added Clarythromycin 500mg  twice a day to the Amoxycillin it was magic everything improved enormously. I only expected to be on this a few weeks LLMD confirmed it was a recognised treatment combination for Lyme Disease and maybe I also had Mycoplasma a co infection Lyme Patients often have.

I remained on this combination for many months and each time I tried to stop Clarythromycin the swallowing problems returned quite the scariest symptom like cramp in your throat which after a few minutes would pass.

Now although I still have a few minor Lyme Like symptoms and may, I am advised by LLMD need to go back on antibiotics at some point in the future (due to dormant cysts ability to replicate again)  I have been off antibiotics 11 weeks and have no pain or muscle weakness. Previously I had not been able to walk up or down stairs properly for 3 1/2 years and had been retired early on ill health grounds from the Civil Service.

There is much controversy about the diagnosis and treatment of Lyme Disease and anyone with Arthritis needs to look into this controversy before discussing with Doctors, until Doctors are more informed than they are at present.

I started a blog from which there are many useful links into research articles and sites http://lookingatlyme.blogspot.com/

I found this site Road Back Foundation through Ruth who had made a video of her RA which has now been diagnosed as Lyme Disease.

I applaud the creators of this site for the opportunity of raising this sort of awareness and hope that many more people are helped to find the cause and treatments that help them. I am hopefully at the end of my journey but I hope that my experiences may be of interest to others still trying to find something to treat their illness. 

Best wishes to you all.

 

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