posted
Sorry to be so dramatic, I'm feeling so sick. I've been on and off antibiotics for about 2 years now. Each time I decide to stop it's because my body has such extreme reactions to the meds. My LLMD does not seem to care and keeps prescribing 1000 and 2000 mg's of meds despite me being 5'1" and 110 lbs. I've officially decided to stop the antibiotics now but I'm not sure where to turn. Herbals, Holistic, Homeopathic... Is there anyone that can shed some light and point me in the right direction?
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
What got me on the road to recovery was antiparasitic herbs and salt/c. Parasites/worms can play a MAJOR role in Lyme and is often overlooked even by the best LLMDs. Google parasite symptoms.
You can start with something like Parastroy or Humaworm then add other herbs such as cloves and digestive plant enzymes. Also visit lymestrategies for the salt/c group and other alternatives.
Gae;
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Take some time and read the many rife threads on this board. When abx fails.....there are many options.
I'm not claiming cures or that it's any easy road.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I understand what you're saying about the high dosages you're taking, and the small body frame that you have. Just wondering if you've tried on your own to take the antibiotics prescribed, but reduce the dosage to something more manageable for you. That is something that I've had to do at times, and it did help me.
What type of reactions are you having? Can you tell whether it's a Herxheimer? If so, detoxing while on the antibiotics is essential to moderate the Herx. Drinking lemon water, epsom salts baths, milk thistle, chlorella, are supportive for detoxing. I used Nutramedix Burbur, a liquid tincture, for reducing Herxes, and that was very helpful.
How is your liver doing? The antibiotics and dieoff can really tax the liver. Have you been evaluated for the MTHFR genetic mutation? Many of us with chronic illness have this fairly common genetic mutation. It can interfere with the liver doing it's best job, and make us more sentitive to the antibiotics and dieoff.
How's your diet? Are you on a Lyme diet plan? Gluten free, sugar free, dairy free? You can read more about it in "The Lyme Disease Solution" by Kenneth Singletom, MD.
Consider seeing a different doctor. If you are having such strong reactions to his/her treatment protocol, and you feel your doctor is not being responsive to your needs, there are other fish in the sea. Get another opinion.
Those are a few thoughts for you. Best wishes.
Posts: 873 | From WA | Registered: Dec 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 1. parasites.
I agree with Gael in that parasites can be a huge stumbling block - there are various ways to approach that but, at this point there has been enough discussion about that at ILADS conferences, etc. that most LLMD should be on board, somehow.
2. What's your liver support? THAT often makes all the different in how well someone can tolerate assertive treatment.
LIVER SUPPORT & and several HERXHEIMER support links, too.
Some KIDNEY support detail, and
LL ND (naturopathic) link & RIFE links here, too.
See the PORPHYRIA link regarding liver conditions that can trip us up. In that are other links to the MTHFR genetic mutation that hopeful mentioned above.
3. Other nutrient support? Getting LOTS of top antioxidants (mostly from colorful foods)?
I'm sure your food choices are good, but also avoiding gluten and Dairy can often help us better tolerate tx, just in case that not been mentioned. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: RIFE Machine - Reference LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I was 5'1" and 110 lb. when treating lyme, and my doctor gave me full Burrascano style doses of antibiotics.
For example, I took 4,500 mg of amoxicillin per day. So, I think what your lyme doctor is doing is correct. However...., read on.
Also, you can't get rid of these diseases by going on and off of antibiotics. You have to stay on them until symptom free.
However, if you are having extreme reactions to the meds, the doctor should consider this and not ignore it. One way of handling this situation is to slowly work the patient up to the proper dosage.
Another is to be sure the patient is detoxifying, because that is often the cause of the extreme reaction to meds. So, a great lyme doc would give the patient glutathione to open up the detox pathways. This is just one example of how this can be done.
So sorry your doc is not adjusting his protocol to your needs. There are doctors who will adjust. I suggest you find one. Get patient recommendations. I remember a person who had this same problem and she was going to a doc in NY. She said she was not successful in treating with meds until her doctor started her out on small doses and worked her up to the full dose.
She wrote telling me how amazed she was that she was now taking very high doses of meds with no problem!
If you want the doc's name, let me know and I will search my emails to find it. I believe i can find it for you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
LymeOverwhelmed, I feel your pain. I have been trying to treat my Lyme for well over 5 years(had it since '92, best guess)and it does indeed suck. I have been on abx for up to 6mo at a time, done endless herbal protocols, parasite cleanses, raw food, detoxing to the point I KNOW that whomever produces epsom sat is sending their kids to college based on my useage alone...
Yet here I am. Stil struggling and battling this gawd-forsaken illness.
Can't afford a LLMD where I have to pay out of pocket. Have a great Immunoogist but he is NOT a Lyme specialist so its sort of "well, do you think we could try this?" "Hmmm, let me ook into it and we'll see" He tries, and has helped me more than anyone else but still...
I was/am a runner with 3 kids and I am trying to get my PT and Nutrition certs while battling yet ANOTHER relapse. It is frustrating.
I wish I had advice for you....mostly I anted you to know you aren't alone Posts: 13 | From MA | Registered: Sep 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
some meds i could take full dose right off but others i had to take a tiny bit and ramp up. many llmds do not believe herxing a lot if a good thing. a gentle herx means you are killing bugs but notso many to overwhelm your body.
with flagyl and rifampin i had to break pills into little crumbles and start with one then two and gradually ramp up.
these were my hardest meds to take but i got the most better from them. it was worth it.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I also am ramping up VERY slowly on flagyl. Thinking about you and wishing you the best.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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