When to draw the line?

Hi everyone

I am hoping to get some advice although the question I am about to ask is probably impossible to answer as treatment is so different for everyone.

I have been on treatment now for 6 months, and am making virtually no progress at all. My symptoms have gone from very bad to extremely bad. Neurological symptoms have really increased and joint and muscle pain is now widespread and excruciating. Prior to antibiotics I mainly had severe back and neck pain, but now everything hurts, and seems to be getting worse week by week.

I have been trying to convince myself that Im herxing and things will at some point start to turn around, however my doctor doesn't seem to think that I am herxing, and possibly have sensitivities which need addressing. I will be getting some more testing done soon in relation to this.

My main question is, realistically how bad should you allow things to get before making the decision that the medication is probably not working, and perhaps a change in protocol is the answer?

I wasn't expecting to see dramatic changes in 6 months, but things have got so severe I am wondering if the antibiotics are just not working for me. Whenever I see my doctor, I always come away feeling even more confused, as everything seems so vague.

I am currently on a waiting list to see an LLMD in America (I am in the UK) but the list is at least 8 months, so am not really sure what to do in the meantime.

Should I carry on with my current treatment in the hope things will start to change soon, or look into other options?

Any thoughts would be much appreciated.

Many thanks

Hi worrypot

thanks for the suggestion, i am actually already seeing an LLMD in the UK (sorry I didnt make that clear in my post)!!

I spent the first few months on Doxy, then Flagyl for 6 weeks and now I am on Rifampicin, things have got considerable worse since the Flagyl onwards.

Which specialist do you see in the UK, I know we have very few, I go to the clinic in Hemel Hemstead, and was diagnosed by them in November after 3 negative NHS tests and a year of misery!!

I am trying to be patient with treatment, but it's very hard watching myself deteriorate. I have 2 young children to look after and can barely move at present, so it is becoming extremely difficult and stressful, I have also recently found out my son also has Lyme, hence the reason for seeking out an LLMD in the US, as I am struggling to get treatment for him in the UK, his tests are positive but no one wants to treat him, our UK LLMDS are being constantly scrutinized and seem concerned about treating him for the fear of being struck off, so it would seem.

I am just concerned that the treatment I am on is not working, I did expect to get worse before getting better, but honestly, where do you draw the line and say enough is enough, I mean should I still be herxing even now.

I am so pleased to hear you saw improvements so early on in treatment, I hope you continue on your journey to better health.

Best wishes

LH

I'm sorry to hear you are not improving. Lyme is so unpredictable and everyones recovery is unique.

In contrast to popular belief... I do not think using antibiotics for extended periods is a good idea. I would move away from that phase... and instead focus on healing yourself. Lyme causes damage within the body. The bacteria are dead. But the damage remains. (In my opinion)

Try to improve your diet... gluten free is a good idea.
And exercise... even a little can help.

There are also a few herbs that are commonly suggested for Lyme recovery. I have had success with Ginseng and Astragalus for improving fatigue.

This approach has worked for me. But everyone heals differently. Listen to your body and get well.


-MysteryLyme

I tried quite a few antibiotics when I was being treated for Lyme. I usually tried something for about 8 weeks before deciding whether to stick with it or to change. Some meds helped and it was noticeable within the 8 week trial or they didn't help and I stayed the same or got worse. I tried at least 6 antibiotics, including 3 weeks IV Rocephin, that I can remember, it was probably more.

I ended up taking meds on and off for about 4 years. When I was stable for a few months, I would stop meds and see what happened. Usually I relapsed withing weeks so I would start the meds again. When I finally stopped making progress and I stopped relapsing, I stopped taking meds. This took a long time and a lot of trial and error. I have not relapsed in almost 20 yrs.

During this time, I changed and improved my diet, added exercise, and any other lifestyle changes that allowed me to take care of myself and heal. Lyme disabled me. Now, I still have health issues but I can do most of what I want to do most of the time.