posted
Hi. I've been mostly bedridden for the past 17 years. I had a tick bite and ring rash in 1997, and doctors were puzzled and didn't order a Lyme test until 2005. Been on and off a host of oral and IV antibiotics, antimalarials, and detox agents since 2005 with no LASTING improvement.
Keep ending up back in bed and restarted Lyme, Bart, Babs, and Candida treatment. Results have never lasted more than six months. If it weren't for Lortab and Klonopin I'd lose custody of my kids and my 18hr/wk job.
I've never mentioned to any doc, not even my wonderful LLMD the tick bite and ring rash, as I'm too embarrassed! It was in my pubic area. Sorry to gross you out.
Anyway, IGeneX tests came back positive for Bb and Bart. Negative for Babs, but treated for it and Candida too, since I have all the symptoms an improve right after taking meds for them.
So why, for 17 years, my entire adult life! do I keep ending up straight back in bed debilitated?
My worst symptoms are PAIN (joints-especially in my spine), fatigue, brain fog, anxiety, and ear symptoms mimicking Ménière's disease. Those are just my worst symtoms. I have as well nearly everything on any Lyme questionerre.
So is it possible to conquer Lyme and Coinfections? Even when treatment starts 8 years after infection? Is the delayed treatment the reason I can't lick this thing? Who out there has beat this beast?
What's your doctor's last name initial? If where allowed to specify location, where does he/she practice?
How soon after infection did you start treatment? What did your treatment include? We're you bedridden before treatment? Any advice or encouragement? Feel free to ask me any further questions.
posted
Ellen, do you follow the Lyme diet strictly? Have you been tested for food allergies by your LLMD? Those 2 things alone can put you in bed and prevent recovery. God bless you.
Posts: 143 | From Pittsburgh | Registered: Jan 2014
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posted
Good point. I didn't even know one Lyme diet was superior to the rest. Which is considered the best, and where do I find it? I eat mainly lean meats and vegetables. Eat veggies raw as cooking is very hard for me.
Never tested for food allergies, other than milk. I can't say I've eliminated everything with a possible trace of milk- just eliminated dairy. So I don't have to go to an allergist for testing? My LLMD is an internist and endrcrinologist only. Should I just ask him? Thank you!
There is a lot of new research since a $40million grant last year for lyme research.
There is a protocol recommended for Bb that appears to be a standard protocol in Germany, where lyme is rampant (3 strains including Bb).
Minocycline and Tindamax is recommended for Bb, and has the backing of recent US studies. Tindamax is listed as Tinidazole in the study, the German brand there.
Tinidazole/tindamax has been used for several years as an antiparasitic for babesia, but research in 2011 and after has shown tindamax kills all forms of Bb, including blebs, biofilm, cysts, spirochetes, and intracellular forms (Bb within human host cells).
Here is the German paper, which also cites a 20ll study by Dr. S & Dr. M, Conn, confirming tindamax.
Yes, I know of someone who has been cured or at least long enough remission to believe cured, using this mino/tindamax with some pulsing.
Posts: 254 | From North Carolina | Registered: Nov 2013
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posted
Hmm. Have been on Tindomax and minocycline orally for 3 consecutive months in the past with little or no noticible improvement. Bart treatment is what seems to help the most. Thank you for your kind reply and link!
As far as alternative treatment goes, have tried a host of Lyme/ Candida diets, myofacial release, traditional physical therapy, and even psychotherapy, as well as an array of nutritional herbs and suplents, all with no noticeable improvement.
What HAS worked temporarily in the past includes IV Rocephin, IV clindamycin, and oral Levaquin. Problem is that I end up where I started just a few months after discontinuing them.
Please keep the ideas coming. There's bound to be something I haven't tried.
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi Ellen...
I am well from 8 years of severe Neuro Lyme and coinfections...I have my life back completely now, medication free.
I was homebound for 5 years, and considered an "antibiotic failure", when I eventually found mild hyperbaric. I treated with a home chamber daily, along with a clean, gut/nerve healing diet (also very important), and gradually increasing activity/exercise.
You asked why you can't maintain improvements...in my opinion, it is because you have to regain function of your immune system, for starters.
A good resource to learn about hyperbaric is "The Oxygen Revolution" by Dr. Paul Harch, along with his website: HBOT.com.
You can also read this thread (5 pages) for more info and PM me if you have further interest/questions:
posted
I got well 9+ years ago and I know Sixgoofy and TF are well. We each got there by different routes.
I took just about everything. I also have a Rife machine which I bought after I stopped treatment. (Didn't find a cheap source until then)
I used it faithfully for several years and now not so much. I need to use it for candida, which I still battle with. I just got lazy with it.
I think diet is extremely important and I credit that with my continued success. I have plenty of residual problems, but I attribute most of them to the yeast beast.
Here is info from former member, Doc Dave, who also got well and made sure he cleaned up the candida when he did.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
you got some good feedback...now im gonna embarrass everyone again...the pubic area is one of the most common places ticks attach esp on men. i know you are a lady but didnt want you to feel alone. its cuz the skin is easy to attach to, often ticks end up on a leg and work their way up...and its a great place to not be found...
i just dont think you should worry about this..and your llmd should know..altho it isnt that important since you had a pos test
now-im really sorry yo are suffering with all this. i began with osteo arthritis in my 30s thanks to lyme and that has been what has been hardest for me. i used ibuprofen lg doses-2400mg a day for many years while i was raising kids and working-i couldnt walk without it
now that i am alone i have been able to cut the ibu way down by using fish oil and curcumin for inflammation.
i also use neurontin as needed for nerve pain...
i didnt know there was a good LLMD in AL...i wonder if your doses are correct
i have heard good things about rife and hyperbaric
im so sorry you have been sick so long. i was sick 15 yrs before dx and tx but was not bed bound for long until recently...30 yrs in
take care-hope you get some good info here
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I had a significant reduction in my symptoms when I changed my diet. I started with the Autoimmune Paleo then progressed to Paleo, starch free. You would be amazed how much diet can change things.
Spinal pain, specifically around the SI joint has been my most debilitating symptom. With diet changes I was able to knock it down to zero most days.
Posts: 1750 | From United States | Registered: Dec 2011
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posted
There's a book by Dr M, an LLND, "The Lyme Diet: Nutritional Strategies for Healing From Lyme Disease," that you could check on.
Lots of people in the support group I've gone to get better. It's such a wide spread of treatments they try. I think it's a combo of seeing a really good LLMD plus trying tx to see what's going to work for you.
Many people have had to do Iv abx for many months before seeing changes.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Sounds like diet wins out above the rest. Will look into Dr. M's book after I finish this book- Dr, H's.
Surprised to hear that Dr. D. isnt considered a very LLMD. I'm wondering if meeting him would change your mind. He doesn't advertise treating Lyme, as he catches heck from his colleagues when they find out how LL he is. Most docs in AL don't even consider Lyme to exist in AL, hence don't read much about it and definitely don't treat it. Dr. D. says he's seen many cured of Lyme. I'm just his worst case.
When I see him again I'm going to ask for more detox treatment, as my liver's been worn out form Lortab for 17 years. Will also ask for nystatin, as I can't afford months of Diflucan (what I'm on now). Will also ask what I'm doing wrong with my died. Lean meats, veggies, and water is almost a Daniel diet! (Biblical). Hard to get more strict than that!
Sorry to sound defensive when you're helping me. Just seems like I might be doing a few more things right already.
Thank you for your feedback and welcome more. Blessings!
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Some people get better and don't need meds any more with almost minimal treatment, and then assume their case situation applies to everyone else.
The fact is some of us have tried everything, treated heavy metals, treating yeast, diet right, treated coinfections, best doctors, etc, etc. and when we stop lyme treatment, the symptoms return. This is a chronic illness for many people. Chronic meaning it is not cured.
I don't know how any particular case will turn out, but there is a wide variation in what happens when people are tick bitten, in how long and what kind of treatment they get, and whether they are ever able to stop meds.
But a patient needs to try everything reasonable and look under every stone, because there are many facets to this disease complex. Just don't let the story of any particular patient make you think that is true of all of us.
[ 03-17-2014, 11:43 AM: Message edited by: poppy ]
Posts: 2888 | From USA | Registered: Mar 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had lyme, babesiosis, and bartonella at least 10 years before I was diagnosed. Then, I had really lousy treatment for 2 years.
Then, I switched to a good lyme doctor who follows the Burrascano protocol. He got me well in 13 months. That was 9 years ago now and I am still cured.
The doc who cured me was Dr. S in Maryland. He has written a book about lyme disease--"The Lyme Disease Solution."
He generally does not treat people who are more than a 2 hour drive away.
The Burrascano protocol is a 4-pronged approach:
high-dose combinations of antibiotics supplements and herbs the anti-yeast diet, and non-aerobic exercise--specifically, weightlifting for one continuous hour every OTHER day
The 4th requirement--the weightlifting--is essential if you are to clear these diseases. Read about it in Burrascano.
My doc told me at the first appointment that I would NEVER get well unless I did it. It strengthens the immune system. Without a good immune system, you will continue to relapse.
You must do a full body workout each time--arms, chest, back, abs, legs.
You use very light weights and many repetitions to fulfill the requirement for an hour.
I was never bedridden by the disease, but my main symptom was extreme muscle weakness. So, I could not hold the phone for more than 30 seconds, stand for more than a minute, walk for more than 2 blocks, or hold my mouth open to have my teeth cleaned. I dreaded rising up from a chair or stepping up a curb (because it was so strenuous to do it).
Still, I had to do the exercise routine. At first, I could only do 5 minutes. It was pathetic. I would lift a bar with no weight on it and cry. I would lay there panting after one lift.
But, I persevered. After quite a few months, I was up to the 1 hour routine. Then, eventually, I lifted more and more weight. I began seeing real improvement.
Because of this exercise, my diseases were conquered quickly and never returned.
I am not the only one on this board who credits their cure to the exercise requirement. The other person did pilates instead.
See this quote from Burrascano to understand the importance of this type of exercise:
"LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories. It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive.
Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective. Regular exercise-related movements can help mobilize lymph and enhance circulation.
In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed.
The goal is to exercise intermittently, with exercise days separated by days of total rest, including an effort to have plenty of quality sleep.
The trick is to time the exercise days to take advantage of these rebounds. For an example, begin with an exercise day followed by 3 to 5 rest days; as stamina improves, then fewer rest days will be needed in between workouts.
However, because T-cell functions do fall for at least one day after aggressive exercises, be sure to never exercise two days in a row.
Finally, an in intermittent exercise program, properly executed, may help to reset the HPA axis more towards normal. On the following page is an exercise prescription that details these recommendations." (page 31)
posted
Im getting better but it is so slow. Diagnosed in November after at least 10 years of misdiagnosis. Good LLMD now and making progress. I'm going to beat this. Maybe not completely but I am getting my life back.
Couldn't get out of bed in Oct. Just got back from errands, shopping, etc. much better than a year ago and we're just getting started!
I'm just now getting serious about the diet and I am noticing a change right away.
Taking: Doxy, Zithromycin, Byron White formula and will do Flagyl for 3 days in 2 weeks. Also, lots of supplements and herbs and probiotics.
posted
I know 7 people off this group who got well from Lyme and co-infections using long term antibiotics.
My youngest son is also doing well and has beat all his joint pain.
I have not been so lucky. Been treating for a full two years, and 18 months of IV, and still nowhere near well.
Pain is my biggest problem - joint, muscle pain and headaches.
Part of my problem is that my stomach cannot tolerate the medications needed to get well. I repeatedly get severe gastritis on oral meds and then have to stop all treatment except my IV.
Its been very frustrating for me....
One person I know who is completely well, was on treatment for 8 years on and off, so it can be a very long journey for some.
Don't ever give up though!
Posts: 187 | From Connecticut | Registered: Jun 2013
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posted
pointermom - chlorella is a food and reportedly very safe for removing heavy metals and biotoxins.
You could start with that for the heavy metals, though slower than chelating I understand. It binds with the heavy metals and excretes them out of the system, so the toxins/metals don't keep you toxic by recirculating through the liver.
I use chlorella from Source Naturals. For the biotoxins Bb release when killed. Also I had lots of mercury fillings replaced over the years and am sure I am helping that.
Oceangirl: turmeric (curcumin) & Kyolic garlic gets rid of my joint pain and muscle pain.
Ellen - the book TF recommended is the one I use for anti-inflammation diet, The Lyme Disease Solution by Dr. S, Maryland. I could not do the first 2 stages of the diet, but can the later stages and use his list of foods to choose from.
Thanks for the reminder about the weight-bearing exercises TF. I read the book, but forgot that.
Dr. S gives the best explanation I have found anywhere for all the herbs and vitamins and exactly how they work for you.
Posts: 254 | From North Carolina | Registered: Nov 2013
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I use dandelion root extract or tea for liver cleanse (when taking meds/herbs that kill Bb).
annxyzz on the current "Wow..." thread, is using NOW liver regenerator. From her description of what it has/does, that sounds like it might be a good thing for you.
Posts: 254 | From North Carolina | Registered: Nov 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Ellen-I am a Work In Progress.
We can do this, Ellen! but first we have to believe it in our minds.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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