posted
I had another disappointing doctor appt, last week he promised to start me on antibiotics and depression help after the $428.00 NueroImmunology Lab Lyme workup, today he says we better check for mold sensitivity with another test for $622.00. I am already in the poor house and am scared of losing my job, so just wondered if anyone had experience self treating. Please feel free to private email me.
Thanks, Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't mind self treating on herbs or other alternative therapies but antibiotics are kind of tricky.
I think you need to have a doctor's advice when you're doing abx. It you stop early & don't finish the full course - you can create drug resistant bacteria.
Also, with Lyme they give you several abx at once. I think you really have to have professional advice on that. Antibiotics are very strong & can be dangerous if you don't do them correctly.
Herbs are strong, too, but I don't think they can be as potentially harmful as drugs. You can stop taking herbs if you feel the reaction is too strong & you won't be creating a drug resistant bacteria.
Part of the reason I decided not to take abx was that they are expensive & I didn't know if I'd be able to continue to afford the whole course that I would need to get well. Some people take them for years.
I think that you can take herbs for years with less side effects - so, I decided to switch to herbs. I'm not completely convinced people taking abx for long periods of time actually get well, either.
I feel comfortable with an herbal protocol. Some people feel more comfortable with drugs. It's a personal preference. I wouldn't self-treat with abx unless you're a trained nurse or doctor.
Just my opinion...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Many , if not most of us w/ lyme in Texas self treat w/ ABX out of necessity . The state hounds docs who prescribe long term ABX , even though many docs admit they KNOW it is necessary to kill to get the upper hand w/ any spirochete .
I wish I had access to an LLMD , but they are extremely expensive ( how fair is that ? ) and there is NO foolproof protocol that fits everyone. There are TOOOO many varieties or strains of the bacteria . This website is proof that lyme treatment is ALL experimental - undisputably .
Many people buy ABX overseas , or online, or go to Mexico . Others try herbs , rife, hyperbaric chambers - anything they can throw at the bacteria . So far there is not one protocol that is a garaunteed success , even w/ a big bucks LLMD and the mo$t expensive ABX . That is why I can not understand one person criticizing another person's personal choice of attack. I have read FAR TOO MANY posts by folks w/ "respected LLMD's " as treatment providers who have had multiple rounds of expensive ABX and still relapsing after a year or two of treatment for babs or bartonella.
IMO , this is a save yourself disease . Even the docs really do not have concrete answers .
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
If anyone has a good place to get antibiotics cheaply and safely (maybe Europe?), private message me.
I really don't want it to come to this, but I would rather do that than buy them from CVS for $2,000 if I can't get my insurance to pay!
Thanks!
Posts: 4590 | From Midwest | Registered: Jun 2008
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daise
Unregistered
posted
Hi Janis1023,
I'm sorry things aren't working out.
If a doctor prescribes antibiotics (maybe your current LLMD, by phone: say that you can't afford mold testing now,) and if you're income is low enough, and if you have health insurance now, however they won't pay for Lyme meds, you might try Prescription Hope:
pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
Yes, i'm self-treating with abx. I went to a respected LLMD for 3 years, so i just repeat some of the doses and combos that he gave me. I've been through them before, so i know the pitfalls, and how i react.
He used to prescribe me a 5- month course of Biaxin+Plaquenil. So i go to a holistic MD, who is willing to prescribe me abx, and ask for that combo plus Omnicef ( a triple combo i read about on a lyme forum) plus Malarone for possible babesia which i self-"diagnosed", plus Bactrim that the MD was willing to give me.
I stopped the Plaquenil a week ago because of a doctor's warning as a possible cause of my anemia.
Plus Artemisia annua and Elecampane for possible babesia, plus Lomatium for possible viruses, plus herbals: Andrographis, Polygonum, Teasel, Allimax, GSE, mushrooms, Pau d'Arco, Neem, proteolytic enzymes, etc, etc.
I've been feeling worse in the week since stopping Plaquenil, and thought the drugs weren't working, but then i got a sweat and was hot , and suddenly felt much better; --- so i guess it was a herx.
I don't know what i'm doing, but as long as i keep getting better, i guess i can put off finding a real LLMD for a while longer. It's time to switch drugs, so i'll go to drugs i've never tried before, like Minocycline perhaps, in a combo that other people who go to LLMDs are taking. And it's important to KEEP READING, question everything, and get the monthly CBC, CMP.
Fortunately i have mild symptoms and no trouble taking abx-- nothing complicated; except for an unknown x-factor, a Fry Labs finding of those new hemobartonella or mycoplasma attached to red blood cells,; so all the extra drugs and herbals may be attacking the unnamed microbes, since i keep getting better.
Posts: 1226 | From USA | Registered: May 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Janis,
I wouldn't let your doctor talk you into taking tests if you aren't convinced you need them....it's your money, not his!
If I were you, I would ONLY focus on the Lyme issues for now. If you HAVE to pay for things out of pocket, at least you'll only be paying for the most important issues (tick diseases).
Make sure you are seeing a good LLMD, if you can. You will pay for the appointment, but just think, if you get better faster, you will save money in the long run. Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I think this mold test is BS-- do you have lyme and or co-infections.
Mold is a secondary issue and is not going to make you Lyme/like sick unless your in a really, really bad environment- otherwise everyone around you would be sick with similar symptoms.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Going to an LLMD isn't always going to make you better, either.
I spent over $10,000 going to doctors.
With all the tests, at least I was able to find out that I had Lyme via a clinical diagnosis. The tests aren't always accurate.
Even the best doctors can't cure this thing. You just have to keep trying stuff until you can feel better & function. I haven't gotten there, yet.
The antibiotics made me feel worse & I didn't feel like I was getting anywhere with them. Some people have different responses to them, though.
If you do self-treat w/ abx - do alot of studying. We are all trying to do the best we can to get better. There isn't alot of support out there from doctors, media, insurance, gov't, etc.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I'm self-treating Lyme with clindamycin, 150mg 4x/day. I think I'm allergic to the rest of the abx.
Posts: 13117 | From San Francisco | Registered: May 2006
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-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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posted
Thx for asking, Janis. Wanted to answer because clindamycin is my wonder drug. 150mg 4x/day at first, now around 3x/day, with a little food.
The first time, I took it for six months, then it stopped working. Probably because Lyme went into cyst form.
This time, again, most joint swelling has greatly decreased. I'm three months into it again.
I am now testing cyst buster med. Herxed on the first attempt. Have another test to do. I'm allergic to most meds.
As far as I know, clindamycin isn't mentioned in Lyme-treating protocols, yet it is the only abx that's treating my Lyme. So I think it should be listed.
Posts: 13117 | From San Francisco | Registered: May 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Please be careful if self treating with antibiotics. You can get elevated liver enzymes without knowing it, which can kill you before you know what is happening.
You can also get horrible candida or other fungal infections if not taking an antifungal like fluconazole or nistatin.
Those drugs can be harder to get and more expensive than the antibiotics. So be prepared to treat and avoid fungal infections in an intense way.
If you self treat, it is a good idea to get blood tests occasionally from a friendly doc or naturopath, to check your liver enzymes etc.
For more info on self treating with abx you can do a search here under veterinary and also under bicillin sources.
I'd be very careful taking antibiotics without a cyst buster. You don't want to just drive the bug underground and have it come back worse later.
You can get metronidazole (a cyst buster) for fish without a prescription, and proteolytic enzymes and bee venom are supposed to do the trick too, but nobody knows for absolutely sure.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm self treating with Bactrim at the moment. I'm only doing a test trial of 2 weeks. I've used it before.
You must have a good understanding of the drug, your body and what you're trying to accomplish, else the risks can be serious.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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