posted
I'm a newbie to these boards and am on Rocephen (sp?) IV third week. I don't feel better and I have to admit, this IV pic in my arm is not helping my mental health.
I've read here that taking Samento TOA-free is good to rid us of the ketes.
Is there another way to go other than or in addition to IV antibiotics?
I just saw the thread on who is cured/better, but it doesn't say what worked to get those folks better.
Your best efforts that showed results? I am so desperate.......I can't even explain.
posted
Here's a warm welcome to the board. We're glad to have you, but sorry you had to join...if you know what I mean.
Desperate, yes, we do understand.
I'm a newbie here too. What I've learned about Lyme is that it takes more than antibiotics to tame the beast. In addition, you must be tested for co-infections, and knock them out as well.
I've also learned that treatment is best given through a Lyme Literate Medical Doctor (LLMD). So I do wonder if you are under the care of one. They are aware of multi-faceted treatment protocols.
Many here can speak with more knowledge than me, but I am happy to share with you the protocol my doctor uses.
Artemisinin -
Artemisinin is a herbal treatment for parasitic infections and malaria that also protects against particular types of cancer.
Extracted from the plant Artemesia Annua L (sweet wormwood, also known as the Chinese herbal Qinghao), Artemisinin has been used for centuries to kill parasites, particularly worms and flukes. These parasites, which are present in us all, create a burden for the body, sapping energy resources and creating by-products that need to be excreted.
NK Stim - has Olive Leaf Extract - antibacterial, antiviral, antifungal and antiparasitic
Oral Antibiotics - depends on what the patient can tolerate. I started on Doxycycline, but could not tolerate it, had stomach pain. Now using Zithromax (Azithromycin).
Nystatin - for systemic candida and to prevent more of it while on antibiotics
Probiotics - to replenish the "good" bacteria killed of by the Nystatin!
Samento - Samento Is a medicinal rainforest plant that has been used for many years by native Peruvians. Its properties include Immunomodulation, Antibacterial, Antimutagenic, Diuretic, Depurative, Hypotensive and Vermifuge.
Studies suggest Samento to be beneficial in the treatment of a wide range of immune system related conditions; these include but are not limited to cancer, Lyme Disease, arthritis, bursitis, rheumatism, allergies, ulcers, systemic candidiasis, all forms of herpes, diabetes, lupus, chronic fatigue syndrome, intestinal disorders and HIV infection.
Cumanda - a brown liquid derivative from a tree bark from Peru and is used to treat patients infected with viruses, parasites and lyme disease.
Burbur - to help with the herxheimer reaction (lessens the misery of going through the process of bacteria die-off which releases toxins in the body)
Boluoke (Lumbrokinase) - To remove fibrin in the blood vessels caused by the Lyme
Also, please go to the "newbie" link at the top of "medical questions". You can find lots of good info here.
I'm hearing a lot about a book called "Healing Lyme" by Stephen Buhner which presents many herbal alternatives or things to add with the ABX.
Also please print off "Treating Chronic Lyme Disease" by Dr. Joseph Burrascano.
I am being treated at the Fibromyalgia and Fatigue Center which found my Lyme Disease after no one else in 6 years did. They say:
"Treatment of chronic Lyme Disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst.
Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease.
Consequently, the usual 2-4 weeks of IV or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy.
A multi-system inegrative approach can, however, dramatically increase the likelihood of successful treatment.
This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).
...standard treatment will fail the majority of the time...One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients."
I know it's a LOT to take in, especially when you are having such a difficult time. I just offer this in hopes that something here will be of help to you.
Best wishes, take care, Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Also, you can visit my approach to treating Lyme at my web site below. Feel free to ask any questions about my protocol if you have them. Good luck
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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I wish there was one thing that would help us and a quick way to get rid of Lyme. Unfortunately there isn't. I am getting better though due to a combination of many things and a lot of patience. But here is an attempt to answer your question:
The one drug that made a big difference for me: Tetracycline
The one detox thing that made a big difference Podi patches from akgnaturals.com
The one thing other than drugs & detox I must do Anti Yeast Diet
The one supplement I must have: Probiotics, enteric coated.
I need all these things right now. After 6 months though the tetracycline will stop working and I'll switch drugs again.
Be patient. My LLMD says you often won't know a drug is working until you've been on it 90 days!
Stick around and read alot. There is so much info here at Lymenet.
hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hello,
Welcome. I don't know if Berks County is close to Rockville, MD, but that is where my LLMD is located. He is a medical doctor who is also a board certified homeopath and board certified acupuncturist.
If you are new to Lyme Disease, you may not yet know or fully understand the mean, nasty nature of curing this disease. When you kill off Lyme bacteria, a toxin is released that is extremely painful to your body. It can also make you feel very sick and lathargic. Therefore, if you experience a sharp worsening of symptoms, your medicine is working.
My doctor is treating me homeopathically which has NO SIDE EFFECTS. If you are searching for a safer treatment that is also effective, send me a private e-mail and I will give you his name and phone number. It only took 7 days for my body to blow up like the Michelin Man mostly in my hands and feet. They felt like a million bees were inside stinging me. Gradually, week after week, my symptoms have lessened until now I only take Advil occasionally. For the first four months I took it daily. I'm in my 5th month of treatment and have regained most of my functioning although I have some residual swelling in my left (dominant) hand and right foot.
I also take probiotics, aloe vera juice, bromalain. I have tried acupuncture which worked well for reducing swelling.
Whichever method you choose, get a good LLMD and hunker down for the long haul. This disease does not normally cure overnight.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Hi Tia, I had Lyme Disease for 1 year before I was diagnoised. I took oral antibiotics for 2 weeks and then IV Rocephin for 3 months and consider myself cured. Hope this helps . . . Tootie
Posts: 114 | From Seaside, Calif. | Registered: Oct 2001
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Make sure you cover all of your bases before you stop meds, and understand that it will take months if not a year or more to beat this disease.
Some here have been at it for over a decade and are still not cured. Its a matter of putting all the pieces together, and the answer isn't the same for everyone, but there are some docs out there who know what works better than others...
And those docs COST...I paid $980 cash out of my own pocket for one visit to a doc...IT WAS WORTH IT...I am now cured...
And your family doc or the one your insurance company likes isn't likely the one who will make you better...don't make your decisions based upon the fact that you will only have a $15 copay, whether its your doc or your meds...some meds cost me $20 PER PILL. Accept it, its par for the course.
If you have to pay out of pocket, suck it up, I spent a few thousand...it will cost you more later if you don't do it now...I have met people who showed me stacks of medical bills over 250k that aren't cured...I paid under 10k to nip this in the bud.
Some of you reading this may think that's a lot of money, and it is, but if you can't work then you will lose much more in the long run...figure out a way to do it...you don't really have a choice when you think about it.
Resign yourself to the fact that your whole world will revolve around Lyme until you find the right treatment and see it thru to the end...the quicker you realize that and put all of your resources (time, financial, spiritual, etc, etc) into effecting a cure, the faster it will happen...
Some people treat this like a bad case of the flu until they realize it will never go away...by that time many opportunities have been lost...put everything you have into it now.
And after talking to hundreds, if not thousands, of people with Lyme, I have never met anyone who was cured by using only herbs or vitamin supplements or colustrum or other natural immune system pills.
Matt
Posts: 106 | From The Moon | Registered: Sep 2002
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rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
I would find a great LLMD, one recommended by happy customers.
And, I would stay on oral antibiotics (abx) as long as you possibly can.
I'm currently into a year remission of sorts and have taken over three (3) years of abx. Only got better with orals...did IV for 4.5 months when first diagnosed (dx) and BEFORE I saw a real LLMD.
The above is JUST MY experience and not to be taken for anything else.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It took 4 1/2 months of IV rocephin for me to see noticible improvement. I was on it for 6 1/2 months before it was pulled due to a fungal infection in the line.
Track your days with some kind of numbering system to see how you're doing. 3 weeks on IV is nothing. Come to see your picc line as your friend. I did, and was sorry to see it go, for it helped me a lot.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Bicillin LA and Biaxin. Search it on this site. Many are very satisfied.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, Rosemary, hadn't seen your posts in awhile. Glad to hear you are feeling better!
Hi, tothepoorhouse (love your name!),
When the bacteria are killed off, they give off toxins, that make you feel worse at first (Jarisch-Herxheimer reaction). So the idea of de-toxing is just to create ways to make the body more efficient at getting rid of the junk.
There are cheap ways to do this. Drink plenty of water. Try hot Epsom salt baths, or a dry sauna, to help you sweat. Don't overdo it. Exercise if you can, and plan on napping after. And gets lots of sleep -- your body is working hard to fight off those bugs.
A lot of people feel better if they go out and get a little fresh air once or twice a day. I think it is because when our immune system is down, our bodies don't cope as well with the little irritants like paint and carpet fumes, furniture polish, dust mites, etc. that we deal with every day. Just be careful if you are on sun-sensitive antibiotics.
Dr. B's guidelines mention various supplements that help replace what the bugs and your body are using up when you have Lyme. Some docs are cautious about "feeding the bacteria," so check with your doctor if he's okay with these. Some of the cheaper ones that seem to help many include B vitamins, vitamin C, and magnesium.
I hope you're feeling better really soon.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Oral abx as long as possible. In my experience, abx alone are not enough. I have had really good luck with high dose infusions of vit C and minerals. Gave me a pretty big herx, but moved me along in the healing process. Good luck!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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I'm not out of it yet, but infected for 20 years before getting a diagnosis. Minor symptoms for 17 years then complete HELL. My LLMD is certain that my "healthy ways" saved my life (don't smoke, don't drink, exercise, cautious with food - limit artificial stuff).
Adequate treatment is a combination of many things (abx, detox, colon cleaning, supplements, alternative therapies) and reducing the amount of "artificial" stuff that gets into your system will help for sure.
You wouldn't believe the difference it made in my treatment when I switched to organic skin and hair care products (just an example).
Look for Gigi's posts. They're a wealth of information.
Good luck to you. It can be a long road. It has been for many of us.
Christelle
Posts: 159 | From CT, USA | Registered: Jan 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
$800 spent on LLMD and his homeopathic remedies and I am nearly well. I'm in my 5th month of treatment and the pain/swelling is narrowed down to left hand and right foot. This has become so minor, I have not needed Advil this entire week. I am looking into lymphatic massage to see if this swelling can move on out. I would estimate I am currently at 90 to 95% well and I expect a full recovery.
I too led a very healthy lifestyle prior to this illness and believe my otherwise good state of health has brought me through this quickly even though my bite occurred at least 10 yrs ago. The doctor addressed my particular deficiencies in the way of B vitimins and trace minerals and this was all part of the homeopathic treatment.
I believe some others who have had to do so much detoxing, dental work, etc in order to get well came into this illness with bodies already in a sick state and immune systems already depressed. In that case, so much more would be necessary than just the treatment for Lyme itself.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
No-No! I'm sorry. My complete cost for the LLMD and homeopathic remedies to date is $1300. I failed to include the first round of medications.
$500. worth of remedies is apparently an unusually large amount as the girls at the front desk were amazed by it. They said they had only seen one other client require that much medication. When I first herxed, it was so strong, the doctor had to cut the medications to 1/4 dose. He said I must have an unusually high bacteria load.
2nd round of medications only cost $300. There will be annual preventive meds too, though I don't yet know what his plan of action there will be.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
You've already gotten some good responses to your question.
I'm still in the fighting phase of this disease. I was undx for 9 years prior to starting treatment in June. At first, like Matt described, I thought I'd figure a way to heal as inexpensively as possible. As soon as I did more reading, I changed my thinking.
I'm glad now that I did.
I see a LLMD who is very knowledgable about this disease and who came highly recommended by people on this board. She started me on oral abx and suggested a number of herbs and supplements.
Seven months into the treatment, I am getting slowly better. It is a slow recovery, but I can definitely see progress. Finding a good LLMD was my first positive step.
I also agree with hats about the foot detox patches. I think they've been really helpful with my severe lyme arthritis.
And I think it's been really good to have weekly acupuncture and take Chinese herbs. My acupuncturist was the first person to suspect Lyme, and I will always be grateful to her!
I've realized, as Matt says, that my primary job right now is getting over this disease. Period. Lyme is a nasty bacteria, and I'm glad I have taken it seriously.
Andie
[ 13. January 2006, 06:46 PM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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JimBoB
Unregistered
posted
From everything I have read so far and experienced first hand; antibiotics are NOT enough and will probably only heal the LD IF you got them within a week or so after being bit by the tick, mosquito or fly.
Herbs have done the most for me SO FAR.
Notice I said herbS, not singular.
A little over 6 years ago, I was bitten, didn't see the tick or whatever did it, but did see the red bulls eye about the size of a quarter on top of my foot. But dumb me, didn't go to my duck for 5 months, UNTIL I was already suffering pretty good with pain and lethargic.
AND of course since HE is a DUCK, (HOW do they speak again?); he only prescribed CIPRO, a super strong oral antibiotic for only 24 days and pronounced me cured. AND I was for about 8 months.
Well this past fall, my symptoms had gotten so bad that I didn't think I was going to see 2006. But lo and behold, here I am. THanks to this group, Amazon.com, Stephen Buhner, and HERBS.
However, in addition to the herbs, I am now on Tetracycline also for 4 weeks, then Amoxicillin and Doxycycline, after a break in between each drug of about a week in attempting to "fool" the Spirochetes.
The herbs I am taking, in the order that I started taking them, are:
Sarsaparilla Cats Claw, (with TOA), Devil's Claw, Andrographis, Resveratrol, Periwinkle, Stephania Root, Milk Thistle, Acidophilus, I will soon add: Nettle Leaf powder and Ginger Root.
Before starting this regimen back on November 25, 2005, I could hardly see, think, walk, and could not kneel, or get up from a chair without help.
NOW, while not perfect yet, I can see VERY good, walk three times as fast, with much less pain, can kneel and get up, sit and get up, etc., etc.. Again, NOT perfect, but pretty good for an old man. All after I "thought" I was DONE FOR just two short months ago.
By the way, SO FAR, I have done VERY LITTLE Herxing. I attribute this to the herbs; along with lower dosages of abx. Drink lots of water too.
posted
Thanks so much to all of you for your responses!! I am just floored at the help I've received since I came to the board!!
Printing everything out to share with my doc, but also going to the herbalist today to get myself better.
I love it here!! I learned more in one day than I have at the Duck's (I love the reference)!! Posts: 867 | From PA | Registered: Jan 2006
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posted
I love it here!! I learned more in one day than I have at the Duck's
Amen sister.
Ewok
Posts: 33 | From Florida | Registered: Nov 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Tia the best thing I did was find out that I have co infection-- Started treating for that too- Huge progress from then on-- --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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