posted
Due not even being able to get a test for lyme here in Holland and getting a very positive respons from BADA.UK on very probably having Lyme I was able to get my hands on Doxycycline. I started selftreatment with a dose of 300 mg a day and planning on keeping this up for 4-6 weeks. hoping that symptoms will go away (extreme pressure and pain in head, bad backpain, stomach/intestine pain, weakness and pain in all muscles, esp. in right arm (tremors, strenght loss), extreme fatigue, flu-feeling... list goes on...).
what can I expect? I heard about herxing, how would this feel? and if I indeed have Lyme, when would I start feeling better? I started two days ago and now feel like a heavy dishcloth, like you would feel after a very high fever. other than that...I'm coping. Very happy that I found BADA.UK because my doctors here were laughing at me after I told them I suspected Lyme. (even though I was bitten by a tick several weeks before becoming so ill. I've been ill for 3 months now... my life is gone). They told me none of my symptoms fit Lyme AT ALL.
please don't judge me too hard for self treating... I can't get help, I've been completely refused treatment.
kind regards
Judith
Posts: 13 | From netherlands | Registered: Jan 2008
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yup, I have heard things like that re The Netherlands & Lyme. Pretty darn sad. I knew a Dutch guy who used to self-treat...
Doxycycline, I was on that for 3 years or so. WEAR GLOVES when driving, wear hats in the sun. You get sunburnt. Sun sensitive.
Don't take with milk or dairy because it chelates the drug, will take it straight out of your system!!!
I got awful nausea from it unless I ate oatmeal or starchy carby food with it. With it, it was fine!!!
We have had a few people locally who were very very poor self-treat. One woman had RSD, Reflex Sym Dystrophy and psyche symptoms big time (delusional). She self treated with abx from a feed store and became symptom free again, so I was really impressed with her and that. She got abx from a feed store,just told them the weight of her goat and voila*)!
I wish you the same luck she had*)!!! Bestest wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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adamm
Unregistered
posted
Is 300 mg a bacteriocidal dose? I think the ILADS standard is 400.
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Judith,
Under your circumstances, I think it is totally understandable why you are self-medicating. I would do the same.
I found taking doxy with food, right after a meal was best. If I tried to take it without food, it had an adverse impact on my stomach.
I weigh about 130 pounds (about 60 kilos), and started at a dose of 400mg/day; 200mg after breakfast and 200mg after dinner. Perhaps you might consider 400mg/day?
People's response to treatment can be very variable. My herxes in response to doxy was that I felt very spacey and it increased my mental confusion for the first couple of days. After a couple of weeks on it I switched to high-dose amoxicillin.
Please see if you can find a lyme literate MD wherever they might be in Europe; it is worth the expense! Hope you feel better.
Posts: 2557 | From home | Registered: Aug 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'm so sorry that in the year '08 anyone in the world would have to self medicate themselves for help with illness. I see stories on TV about children in Africa dying from malaria, mothers slowly dying from AIDS, etc etc.
Judith, my advice to you besides reading, reading and more reading is to spend the extra money and use the best probiotic you can purchase in the UK. The highest part per million of good bacteria that you can find & afford, needs to be used during a long period, every day forever, probably.
Doxy can be rough on the good bacteria that your gut needs to operate well. REad about ways you can detox dead toxins from your body on this website.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Many of us here have to figure this out for ourselves, too. Surely not the best situation, but there is often little choice.
It's a smart person who will ask ". . . how else, then?"
Some good advice above.
avoiding sugar and simple carbs really helps prevent the yeast/candida that can be systemic. Many of us find that going gluten-free helps a lot to reduce pain and brain fog. Complex carb grains that I enjoy include quinoa, millet, buckwheat (from a legume), small amounts of various brown rices.
Lentil soups are good for any meal of the day.
Probiotics taken in between times of the abx can be helpful, actually necessary. Or good quality plain yogurt which you can add too if you like.
I took a combination formula heavy on Olive Leaf Extract (OLE) for the two months I was on doxy. (It's the longest I could be on abx). With OLE I had no trouble with yeast, although for most of my live I had been plagued with it.
If you do take Olive Leaf Extract it may be necessary to take it at a different time than the abx. OLE also has some antimicrobial properties to it as well.
If your stomach can "stomach" raw garlic, you might try quickly chomping down a little chopped garlic in the middle of a meal. If you have a sensitive stomach, I'd wait as garlic can burn. There are allicin capsules around Holland, I'm sure. If you go this route, try to find the very cleanest source. this is a whole book just in itself.
Thank you again for all the supportive and informative advise. I am a bit hesistant about taking 400 mg... I way around 55 kilo's so not that big of a body... I'm hoping 300 mg is enough?
Ah... my mom contacted my childhood GP about what happened with me and he was furious about how I've been treated. he of course cannot take me on as a patient anymore because I live too far away but he made a bloodtest form for me, which I will take tomorrow. He told her not to focus too much on the test though because it can be so inaccurate. I was impressed by his knoweledge and understanding! He okay-ed the antibiotic use, which is nice for me... and hopes I'll find help in Scotland (where I'm going in 2 weeks). but also thought it was redicilous that people have to go abroad to get help.
I'm on my 4th day of abx. The last couple of days seem to have been a bit worse than normal, I'm ver very tired and feeling generally weird (I get this often on the bad days)? head hurts a lot (as always) and today I got up with quite bad lower backpain but I can cope I guess. Still feeling quite depressed about... everything I'm scared as hell that it's actually NOT lyme and these symptoms will stick with me forever. I feel that I will not be able to handle that, which is very scary. I wish... I wish I could get my life back
thank you all for your support though. especially on the use of Doxycyline, very helpful
don't really have the energy to write much more, I'm sorry but know that I am so incredibly gratefull for your support. it means a lot to me.
take care
Judith
Posts: 13 | From netherlands | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
At 120 lbs, I had some serious "Herxing" on 300 mg Doxy. The "Herxes" are cyclical, so you'll see a pattern.
You probably should read up on Jarisch-Herxheimer reactions, if you haven't already.
Good luck in your quest for wellness. Sorry about your situation. Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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