Tesla

Hi
I am a newbie and I am reaching out on behalf of my wife. We live in the UK and my wife has what I believe is chronic Lyme disease.
When she presented to the doctor (NHS) we explained that it was Lyme,s because of the rash and symptoms, In the UK the advice is anyone presenting with a rash should be immediately treated with antibiotics even before a blood test is taken.
No medication was prescribed butblood taken and some 8 weeks later the blood test came back negative (expected) however I laterfound out that it was just a normal blood test (not one for Lyme's). After complaining another blood sample was taken ( lymes testing at last) alas no. This time it was for Lupus. However in the meantime a GP (doctor) sent a photograph of the rash to a dermatologist who confirmed it was Lyme's. it was at this point that Doxycycline was prescribed for 3 weeks. we are now coming to the end of the three weeks with no signs of change. but the doctor has said another blood test will be taken and tested for HIV (my wife and I have been faithful for 36 odd years) and due to heart problems I had an HIV test 2 years ago, of course negative. I am 71 and my wife 56.
The doctor has said unfortunately because this has gone on so long there is no treatment they can provide her.
My wife an academic in Law andis reading for her PhD and is getting distressed on a daily basis as she believes she will lose her mind.
So I am reaching out for any help.
Thank you in advance

i am in the UK as well

the NHS treatment of Lyme and co-infections in the UK is very poor indeed

the issues are mainly that
1, GP's are simply not educated about lyme - or they have been miseducated about Lyme and have not chosen to update their education - so tend to believe many outdated myths - such as
there is no lyme in thsi area - when in reality public health England has surveyed many areas and found Lyme is everywhere - including in gardens and garden birds - all counties have been upgraded to medium or medium high risk based on collection and testing of actual ticks -

2, infectious disease doctors - even if you get referred have followed the American CDC position - that lyme is easily treated and chronic lyme dose not exist - so they are typically worse than the GP's

i was misdiagnosed for over 4 years as chronic fatigue syndrome, fibromyalgia etc and i have not come across a single person who has had appropriate treatment for Lyme - even by the NHS's own guidelines. it is very frustrating

to ensure i understand fully
- are you saying your wife had a clear bull's eye rash - and this was documented - eg GP saw it or you took photos?

i ask because if this is the case - that is all the GP needs to prescribe antibiotics treatment according to the latest NHS treatment guideline

also how long is it now since the bite - or since the rash formed ?

UK treatment guidelines here
https://www.nice.org.uk/guidance/ng95
and the simplified flow chart here :
https://www.nice.org.uk/guidance/ng95/resources/visual-summary-pdf-4792272301

it clearly says treat if bulls eye rash is present - no testing needed ( testing will usually be negative anyway for the first month - not enough time for the body to make antibodies) .

it also says
"Use clinical presentation and laboratory testing to guide diagnosis. If there is a high clinical suspicion of Lyme disease:
• consider starting treatment while waiting for test results
• do not rule out Lyme disease even if results are negative"

if the GP is not following the guideline - you can often pull them into line by writing to the practice raising our concern and asking them to respond in writing - they tend to take letters more seriously than a simple conversation where they can fob you off.

Sorry to hear you’re wife isn’t getting proper treatment.

I quickly looked at the guidelines Garzie linked in his post - and doesn’t it say another round of abx is warranted?
If so - print it off and take it to the Dr.

Thank you all for your help

She was prescribed 100mg twice a day for 21 days,she has said it was helping but now the treatment has finished and there is no indication of any ongoing treatment.
They have now given her an order for the local hospital to take blood and test for;
Creatine Kinase, CRP, Coagulation Screen, FBC, Serum Ferritin, SerumFolate, HBA1c, Electrolytes, Liver profile, Bone profile, Serum B12, Thyroid function (TSH)

Mycoplasma Screen

ASO Streptococcal, CMV Antibody, EBV Serology, HIV, Lyme Disease

SARS-Cov-2 IgG

I do not understand half of them or why the doctor is still insisting on HIV,

The game cotinues

Thanks to everyone

Hi Garzie
once again thank you for the valuble information.
Yes a photo of the bulls eye was sent to the doctor as they were carrying out telephone consultations, plus we stated it was Lyme disease as we have both seen it previously in others.
No treatment was given but general blood tests ordered, some two weeks later the results were negative (expected) however doctor still refused to state Lyme. After "much ado about something" the doctor sent the photo to a dermatologist who confirmed Lyme disease and the doctor after 3 weeks prescribed Doxicycline.
However I believe my wife has acute Lyme, as we believe she was infected approximately 1 year ago, my wife dismissed the bite as a small insect, as she remembers wiping her hand against her leg in the middle of the night. As she has been doing her PhD in Law we put her tiredness down to that, as she studies 16 hours a day,
even now she will not give up. Unfortunatey she now has lapses of concentration, leaves taps on or forgets where she has put things.

Hi Tesla,
I don't have anything to add, but I did want to express my sympathies for you and your wife! The doctors don't know what to do with us, and we need help that they are so reluctant to offer. I had to fight to get more than 100 mgs of Doxy myself - I took in my printed out ILADS guidelines and helped the doctor understand what was being said too use for treating acute Lyme in order to get the right dosage.

Hi Tesla I’m also from the UK there are herbalists that can help too I am on a herbal only protocol at the moment. If you want info feel free to pm me.

My gp dismissed my rash as a bruise I ended up having to buy my Doxy through lloyds pharmacy.

bull's eye rashes are variable and can be atypical in presentation

they can also occur in other places on the body, as in not the original bite site, sporadically throughout the infection.

i guess they can linger and fluctuate too - how long has she had it for now ?

you could also upload photos using a image hosting site and pasting the link below as people here will have seen lyme disease rashes of various sorts before

https://imgbb.com/

I don’t see a link to your photos

a wider shot would help - but that does look lyme like to me

do i understand you correctly -

you are saying you think your wife was bitten and infected a year ago or more - that she also still has the original rash in the original position she was bitten - and that it has not gone away in that time - just changed in colour ?

if so that certainly sounds unusual - as in not typical. but rashes can be highly variable

also - are you saying your wife only received the first course of doxycycline after around 1 year from the time she was bitten ?

if so - its likely that your wife will need much longer treatment and most likely a combination of antibiotics or herbs to treat chronic Lyme - the disease is infamous for being difficult to irradiate after such a length of time untreated

OK great - thanks for the clarifications

wider shot - just a shot of the rash taken from a little further away so we can see wider area of normal skin tone - reddened areas - and any pinkish bands in between - the rash is referred to as bull's eye rash as there are often concentric circles of differing shades - but these can be very faint or spread some distance from the bite site - and so can be hard to spot on a full close up.

45 weeks is a long time in terms of lyme treatment
most source suggest the condition is chronic after 6 months.
once chronic there are a number of factors which compound the issue making it harder to treat.

-the bacteria become widely dispersed - including into tissues with v little blood flow - and hence little antibiotic penetration

-the bacteria form aggregates in biofilm - that further protect them from antibiotics to a large extent

-the hosts immune system becomes suppressed - making it harder for them to recover - even when antibiotics kill most of the bacteria

- the hosts hormonal system, circulation system, digestive system, mood and mental health as well as physical ability and other are often impacted making their general health worse and the overall condition harder to treat.

this is largely why the disease is relatively easy to treat in teh first few weeks but becomes harder after that.

it is still possible to make a full recovery though - it is just a more involved undertaking

another factor not so far mentioned is that a high percentage ( the majority ) of Lyme patients are also infected with other organisms that add to their symptoms and hinder recovery - typically they come from the original tick - as ticks typically carry many infectious microbes - not just Lyme - others can be reactivated viruses that the host had under control until Lyme took hold - and others can be picked up from teh community due to the weakened immune system
sometime these so called co-infections are even the major issue rather than the secondary one - common ones in the UK seem to be bartonella, mycoplasma and a few others

for reasons that are not fully understood - but likely related to individual differences in immune system and drug metabolism and perhaps bacterial strain susceptibility - every patient is somewhat different and one may need to try several different antibiotics combinations or herbal preparations to find what works best. so far there are some general rules - but there is no one treatment fits all solution.

i realise this will sound daunting and overwhelming - but there are resources out there that can help

-i would recommend a book by one of the most respected Lyme Doctors out there - Dr Richard Horowitz - "How can i get better"

it goes into far more specifics and depth than we can here and gives a really thorough grounding on what is going on in chronic Lyme and how to treat it.

there are also articles on many useful websites on specific topics like - testing - or antibiotics for

- Marty ross MD has such a site https://www.treatlyme.net/ here he give short easy to digest articles, often in video format, combining a scientific approach with his own clinical experience
- there are also lots of useful links in the first post in this forum

do not be afraid to ask questions here though - there is a great deal of experience on thsi forum and people are very happy to help

good luck!!

Post Edited (Garzie) : 7/5/2021 9:06:22 AM (GMT-6)

I really appreciate your dedication Garzie. and thanks for all the info. Yes as you say she is suffering from everything you sa,.mood swings, stiff neck, not sleeping (not sure if this is Lyme or her determination to continue her PhD). lack of appetite etc. Latest thing since getting her back on Doxicycline is that the rash has now started itching and has formed a coating of what seems like dead skin cells on top (white) does that sound par for the course?