I'm in the UK and read the posts here once or twice a month when I am able, and have learnt a lot in the past 2 years, thanks.
I'm usually not well enough to type but would really like help at the moment.
I've been ill now for 19 years, daignosed with Lyme and Bartonella in 06, and started treatment in 07.
I've been on Rifampicin, Tinidazole and a protein pump inhibitor for the last 18 months, with 6 months of Levo (ending Sept 08).
I've been improving slightly with some major relapses (lasting 2 - 3 months) so don't know if I'm killing or just managing.
My doctor wants me to either double the Rifampicin (to 600mg) or to add in Artesunate.
I think that for malaira Artesunate needs to be taken with other meds to prevent resistance? does anyone know if this is the case for Lyme Disease, or whether Artesunate wold work well with Rifamicin and Tinidazole?
(I have some cardiac issues, so I think he was being careful).
I would really appreciate any ideas about whether either of these would be a good option, or whether I should be looking at changing the whole regime altogether.
Just feeling a bit hopeless at the moment
Thanks, Alice
previous meds: IV Ceftriaxone (7 weeks); Doxy & Rif (8 weeks); Levo, Tini, Rif, & PPI (6 months)
(Lots of symptoms gone over past 2 years, including neck arching (after Ceftriaxone) and most arthritis better over past 9 months.
some remaining symptoms are: fluey, but a lot briefer than before, lot of glands up when bad, feet really painful, loads of small nodules along back of legs and forearms, lots of hard areas all over body which come and go,)
Posts: 17 | From Australia | Registered: Aug 2008
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posted
alice since this is your 1st post, i'm going to include my welcome post ... check out dr. burrascano's 08 lyme treatment guidelines too; might help you. ?
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
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hi bettyg its lovely to be welcomed and I will recheck the newbi links
thanks too lymetoo! I think that artesunate is a semi synthetic derivative of artemisinin, so maybe adding it and zith to my rifampin and tini would be a good way forward???
yes I've been treating for 2 years now, 18 months on the rif tini combo...does that seem like a long time?
the nodules along the back of my legs (I think along the tendons ) have got bigger and more in the past 2 years, any idea what they might be?
It feels good to have some help,
Alice
Posts: 17 | From Australia | Registered: Aug 2008
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