FINALLY STARTING TREATMENT, any advice?

[MrsAristotle]

Well you know my story lol...yada yada, 6 years waiting, being finally told I probably had Lymes, a co infection and MS.......

Well havent back for an update because although i paid a fortune for the tests etc, the letter from the specialist to my own doctor was lost for 2 months back in my FILE.....until i made a fuss about it.

In this letter she told my doctor they had found abnormal signs of Lymes etc, and one of the recommendations was to take a cycline for 3 months....also she wanted me to do loads of detoxing and stuff.

So FINALLY I got this letter faxed 2 week ago but only got to see my doctor yesterday.

So she has agreed for me to start on doxycycline (I think...I know it is one of the cyclines anyway). I have a script for 2 weeks, to see how it goes and she will give me more as and when I need it.

She has NO CLUE ABOUT LYMES, I even printed off a load of information for her, and also about herxing etc. She was amazed at my knowledge and said she needed to do some reading herself...

Anyway i am excited and scared too lol

The last time i had tetracycline, i had all the rash come out like cats scratches, was diagnosed with chicken pox, and then a reaction to antibotics. Now my doctor realises that this was probably a reaction to lymes.....not CP.

I start on Monday.

Any advice please? What can I expect if anything, and should I be doing anything else, taking anything else etc.

OMG wouldnt it be amazing if after all this time I woke up one morning and it was all gone.

Thanks for all your support and advice on here.

You guys just ROCK.

Big hugs. Mariax

[Ricobord]

After the two weeks, see if you can make a case to your doc for Bartonella treatment. My doc starts patients on Rifampin. Some tolerate it well. For me, it made my stomach pain more persistent.  Between my almost 3 months on it plus almost 3 months on Levaquin, it seems to be gone.  Some people need longer treatment. (Rifampin is an alternative to doxycycline for treating Ehrlichiosis, so it would help with both Bart & Ehrl.)

If you need to convince your doc about false negatives for Bartonella, then look up the doctor at the veterinary school at North Carolina State.  He is a national expert on Bartonella, and he is helping develop a new culture test for it, as antibody tests so often miss it.  He says that's because there are a couple dozen genetic variations, and antibody tests only pick up 2 or 3 of them.

http://web.ncsu.edu/abstract/science/bartonella-epidemic/


Here are a couple case studies from the early days of discovering coinfections with Lyme Disease. This could be good reading for your doctor.

http://www.ilads.org/lyme_research/lyme_articles5.html

[MrsAristotle]

Thanks guys.

The treatment i can have is 3 months, but the script for now is 2 weeks at a time ONLY because the GP would rather see if i tolerate the antibiotic ok first before giving me the full script which makes a lot of sense to me.

She picked doxy because its whats in her medical book for Lymes LOL....

You get what you get in the NHS as far as Lyme literate doctors are concerned, if you want the real thing you have to pay for it, and i am cashed out now.

I am delyaing started today though as i have a rotten cold and cough, and i dont feel 100percent, i think its wise to hang on and my doctor agrees. Hopefully can kick this stupid cold (first one in 4 years), and then start. The lymes if i have it isnt going anywhere lol.

Yes i wondered Rico about Bartonella it was definitely cat sratches....without doubt. I thought Bartonella but all my tests came back negative but what you wrote would make sense.

Anything else i need to do to help? Maria

[JackieCalifornia]

I think doxycycline is also used in Ehrlichiosis.

[Ricobord]

So glad to hear you're starting treatment!! It is a start.

Most ILADS don't use Doxycyline for late stage patients since Dr. Eva Sapi showed that in vitro, it spurred the bacteria on to make cysts and ring forms, which are drug resistant. Mine starts with azithromycin (Zithromax) for at least two weeks. Once tolerated, he adds a second oral. He doesn't usually start any IV meds or shots until about 3 months in so that they can avoid horrible herxing.

If you have trouble with the doxy, then you might ask to try azithromycin instead.  It does indeed sound like the last time you took doxy, you had herx reactions.

The scratch rashes you describe are unique to Bartonella. I think many LLMDs will diagnose Bart based on those scratches alone, since it so often turns up false negative on blood tests.  Bart needs different meds.  Rifampin and Levaquin are popular treatment choices. Levaquin worked well for me, but I had to stop taking it after 11 weeks because of vibrations and pain in my Achilles' tendons.

I believe Ehrlichiosis is treated by mostly the same meds as Lyme.

Sorry, I am probably dumping too much info on you up front!  Hang in there. One step at a time. You are finally making a huge step forward, and I hope you feel hopeful!

P.S. Another European resident, user name of Youvegottobekidding, recently mentioned in a post that the Breakspear clinic has lost most of its Lyme doctors in recent past. While you are easing in to treatment, don't hesitate to explore getting treated elsewhere, especially if the Breakspear clinic messes up so badly again.

P.P.S The latest theory is that it is the combination of Lyme and Bartonella that causes a presentation that mimics MS.  With the Bart scratch rashes, I think it is unlikely you have MS.

[JackieCalifornia]

Ditto what Wonko says.

If your doc refuses to treat beyond 2 weeks, you might contact the office of

Colin A. Walsh MB BChMRCPI
Specialist Registrar in OB/GYN
Addenbrooke’s Hospital, Cambridge

and ask for a referral.  Walsh presented a paper at ILADS a few years ago and I stumbled across his name on the ILADS website, but know nothing about him otherwise.

Also email to

                           contact [at] ILADS [dot] org

and ask for a referral in your part of England.

Wishing you the best!  Hope this doc is a good one for you.  Keep us posted, okay?

[wonko]

If you have been infected for a long time, and if you have at least one co-infection as well as Lyme, I'm not sure how helpful 2 weeks of doxy will be.  

For me, 9-10 months on a combination of 3 oral antibiotics at a time was necessary to make my first real, lasting improvement.  

I also hoped to wake up one day free of all of it, but after 4 years of treating I still have lingering issues.  I'm currently not treating, just sorting out how I feel and trying to get on with life a bit.

Your mileage may vary, and perhaps this is just the start of your treatment, but I would worry that short treatment with one antibiotic might not make a dent in a long-term chronic case with neuro symptoms...

But here is to hoping it is a step in a new direction that will bring you some improvement and relief!

[mojogal]

Ditto Stargazer above. When I first got severely ill, I was in Texas where they don't believe in Lyme. I knew I had it because of medical professional friends in another state. I was able to talk my doctor in Tx to give me doxy for my skin rashes that are really Bartonella. I herxed from a very low dose of doxy. Things started improving since I had muscle weakness and couldn't even walk or open the fridge. I had memory loss and was off balance so had an MRI that showed lesions and was told i had MS because most doctors can't tell the difference unless trained and a spect scan is what is really needed. There is a good chance you don't have MS but have Lyme lesions. Once I moved out of state and to an LLMD, the better for me because, to name a few, I was also diagnosed with lupus, Hashimotos , CFS etc but it all was Lyme in disguise.
I can't wait to wake up and it will be all gone, it will happen. I am only on my 6 month of treatment so hang in there! We are here for you.

[Stargazer_Lilies]

It is different for everyone.  For you, with cycline--be prepared for possible of  the same reactions you experienced with the first time you took tetracycline. That was probably herx.  The cats' scratches--that has to be bartonella.  

So you are dealing with at least two infections.

For me, I gain no significant improvements with cycline-type antibiotics and I regressed. So my infections is not responsive to cycline-type antibiotics and .
they also make my digestive worse.

Probotics was of no help. I found chorella or activated charcoal to be helpful with my digestive functions.  

I takes epsom bath for detox and to soothe pain.  

Listen to your body...if your body tells you to rest or sleep--do it. I found myself become more sicker if I tries to push myself.

Once again, other people's experience may be different.

Oh, I am looking forward to the day I wake up and suddenly it is all gone! I think in reality, it will going away this way-- with more ups and less downs over the time until there is no more downs.

I hope by this time next year I will finally get rid all of it. I certainly hope it isn't wishful thinking, but a real possibility,

However I have been treating lyme unknowingly for about one year (with doxy antibotics by my dermatologist for skin infections) before formal diagnosis of lyme by neurologist.  Then the formal treatment started this past June, and now I am into fifth month.  Just be aware it may take a while.