GP just out of nowhere suggested a treatment!

[mirshine]

I had to bring my daughter to our GP this morning. While we were there, he told me that he had recently been to a talk by an infectious diseases expert. This expert said that if a previously healthy patient all of a sudden is not healthy for some time there is obviously something wrong (well duh, but was still delighted he was bringing up a discussion). The expert had said that in a lot of cases the tests for Lyme disease in Ireland were not diagnosing cases where a person actually did have Lyme.

These people had gone to Germany and had the expensive tests done and were found positive for Lyme.

The expert said that he had two patients in particular, who had negative results in Ireland but were very sick so he decided to start treating with doxycycline. They improved to near perfect health.

My GP thought of me and suggested that I think about trying the course of dioxycycline to see if it helps. He said it may not be Lyme, it may be another type of infection, in which case the antibiotic course would still help. Or it may not be an infection in which case the treatment would not help at all. But there was a chance that it would help.

I'm sick nearly six years. I'm considering trying it out.

Has anyone else tried the course of dioxycycline? Is it too late to be of any use after six years? I have a very tiny sliver of hope. But I'm mostly delighted that my GP came to me with a suggestion!

 

[ukxmrv]

Hi there,

I use Doxycycline for the sinus infections I can't shake off by other means (i.e. saltwashing. tea tree etc). For years I always felt worse after a course (7 days) of Doxy or any AB.

However something happened suddenly after starting Valtrex. On my next Doxy course I felt much better. It wore off quickly after a couple of days.

Based on this I managed to get my GP to prescribe a one month course. Sadly I didn't feel much better at the end and although there were times i did feel better that month it wasn't enough.

Since then I've also had IV AB's for another infection and felt no better after that. The one (by mouth) week course still returns a time of feeling better after.

Not sure if the Doxy will help you or not.

Glad your GP is suggesting things.

 

[mirshine]

Thanks for the reply @ukxmrv I'm not sure about it at all. But it's funny how something so "normal" for others like having a gp suggest a treatment, is a major deal. He's never doubted my symptoms, which I know is a huge deal, but he's never been able to offer any helpful suggestions before.

 

[CCC]

It's so great that your GP is trying new things.

One of the Lyme gurus, Dr Horowitz, has just published his new book: it goes into a lot of detail about antibiotic-based Lyme treatment protocols.

An important point is that you need more than one type of antibiotic at a time. Lyme exists in several forms and places (as spirochetes or as cysts, in cells, in serum, deep in tissue). Doxycycline treats one form and not all places, and also drives the Lyme bugs into a defensive cyst-type form. You feel better because they are not active, but they will come back with a vengeance once the doxy wears off.

It is worth buying the book and passing it onto your GP if you think he is the sort of person who will listen.

If he won't listen, there are some good herbal approaches you can try. It's what we had to use because there is no doctor who knows anything about Lyme where I live. Actually, it's worse than that. We have the highly-qualified infectious diseases expert who is the national champion of 'there is no Lyme in Australia'.

 

[mirshine]

Thanks @CCC I'll have a look for that book. He does seem open to things as long as they are not alternative medicine. He doesn't even rate acupuncture which is quite main stream now.

Actually, it's worse than that. We have the highly-qualified infectious diseases expert who is the national champion of 'there is no Lyme in Australia'.

extremely worrying!!!

 

[CCC]

Here it is on Amazon: https://www.amazon.com/How-Can-Get-...coding=UTF8&psc=1&refRID=Q9YBCDDGR5MJBBQYREX5

 

[mirshine]

Here it is on Amazon: https://www.amazon.com/How-Can-Get-...coding=UTF8&psc=1&refRID=Q9YBCDDGR5MJBBQYREX5

I just managed to grab the last copy on amazon.co.uk.

Thanks again, good to have something to help make the decision and understand the treatment better.

 

[Apple]

Big yay for your GP actually being open minded!

I do know of one girl who was diagnosed with M.E, then Lyme using a foreign test and after a month of antibiotics from her GP DID had a big improvement. There is no way of knowing whether she actually had Lyme or if it was just good timing (she had only been sick a few years), or another infection that was treated, but she's a lot better. But of course there are others who (perhaps unscrupulously) spend years on antibiotics and just get sicker and sicker.
.
So I would stay give it a go and see what happens! But also be mindful not to get sucked down the Lyme rabbithole.

Good luck!

 

[JES]

I'm no expert on Lyme, but those forums I read where people improved were mostly on a combination of different antibiotics and very long courses. Most GP's in western europe will only prescribe a couple of weeks of doxy and I doubt that would do much anything unless you had just recently caught Lyme. I managed to get a prescription to try both a macrolide and doxicycline, and all it did was crash my immune system after 3 or 4 weeks on the antibiotic, presumably because these broad spectrum antibiotics kill most of the good bacteria as well in the process, which can be detrimental to someone with CFS.

Regarding the Germany results, I'd be a bit skeptical about those as well. Lots of these tests could indicate that your immune system is responding to something, but how specific they are, I have my doubts. There is a new test coming out very soon called Tickplex, which apparently can identify many more antibodies and pathogens and should be better in every way than the old ones.

 

[me/cfs 27931]

I was on Doxicycline and Clarithromycin for a couple months recently. The only noticeable effects were some nausea and (ironically) weight gain, which seemed to resolve once I stopped. Other than that, nothing of significance.

My Lyme test was negative. I've been sick with ME/CFS for 4 decades.

Edit: I should mention the antibiotics were prescribed by an outside ME/CFS specialist (Open Medicine Institute). My primary care doctor disagreed with the treatment.

 

[MEPatient345]

@mirshine i am in Ireland too, have done the Armin tests, which were positive. The problem is, they still don't tell you if you have an active infection, and, I'm skeptical about them being overly sensitive anyway. I have taken 7 months of combinations of 2 and 3 antibiotics at a time (rifampin, zithromycin, lymecycline, cerfuroxime) . I decided last week to stop as have seen zero improvement, and it's hard going, taking all that toxic stuff. Also decided after seeing Ron Davis talk about his preliminary finding that some of us may be made worse by certain abx.

It's a difficult choice and maybe it's worth a trial. Some people see a little or moderate improvement but I've noticed in the FB group of patients that are doing the same treatment, many do not. However, the expectation in Lyme groups tends to be that you definitely have Lyme and will see progress. I don't see that borne out in results.

 

[TigerLilea]

Be careful taking antibiotics. They should only be used when there is absolutely no other option. I have said all along that my CFS/ME started after taking Penicillin. After last year's round of antibiotics my health is much worse now.

 

[mirshine]

Thanks again everyone.

I've been sick with ME/CFS for 4 decades.

Wow, sorry you've been sick for so long.

it's hard going, taking all that toxic stuff.

That is one of my worries.

I know that my body gets tired and more weak on antibiotics, so that worries me. But then if there is even a small chance that I might improve I wonder would I be crazy not to try it!

I'm going to read the Dr Horowitz book when it arrives and see how I'm feeling then. My gut at the moment keeps on changing its mind!

 

[wastwater]

It maybe treating something else wasn't it doxy for those with mycoplasma

 

[KME]

Great that your GP is keen to help.


Doxycycline is part of the tetracycline family of antibiotics, and they have properties far beyond just killing bacteria, e.g. anti-inflammatory and immunomodulatory properties, which you could, theoretically, benefit from, even if you don’t have Lyme/another infection. See:


https://academic.oup.com/intimm/art...tracyclines-inhibit-activated-B-cell-function


The anti-inflammatory effects take a while to build up so you’d need to be on it for at least 3 months to see whether it was helping or not. (The anti-bacterial action would not have this delay, so my understanding is that if you did actually have Lyme or another infection, you would notice change sooner.)


Low-dose doxycycline is used long-term for inflammatory conditions like rosacea and periodontal disease. Minocycline is another tetracycline that is used in inflammatory and auto-immune disorders https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651660/


Might just be helpful information for you or your GP.