posted
I was bitten 5 years ago. Symptoms emerged about 2.5 yrs ago. I've been on oral antibiotics for a little over a year. Working with Dr D. It's been tetracyclene and clarith/plaquenil.
I've never noticed any improvement. In the last six months I've had Shingles and a lot more arthritis-like symptoms in joints and back. Since things are getting worse, I'm starting to be convinced that these orals are not going to work.
Do I look for another doc who'll give IV? Do I look for another doc who'll use a variety of orals? Do I stay on tetra with Dr D?
Do people stay on this stuff for years noticing absolutely no change and then eventually something gives???
** edited out the LLMD's name .. not allowed to post names of drs on Lymenet**
posted
Orals can work. You have to get the right ones for YOU. But I would at least begin a search for another doctor. He/she can help you decide where to go from there.
IV may be in order
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you have been with a lyme doc for a year and no improvement, generally that is a sign to look for another doc.
In addition, in your case, if I am right about who your doctor is (5 letters in his name), unfortunately I have heard for a long time that he doesn't get people well.
The doc is the key to getting rid of this disease. You need a doc with a lot of expertise. If they see there is no improvement after 3-4 months, then they try something else--like jumping from orals to IV, just as one example. The patient should not have to be the one to figure out that something needs changed.
You generally should not go a year without any improvement. I say "generally" because some extremely sick people (can't think or walk, etc.) can take a year to notice some improvement.
The number one mistake I see lyme patients make is to stay with a doctor who isn't helping them.
You need a doc with more tricks up his sleeve. I had to go to 3 different lyme docs to get rid of lyme, babesiosis, and bartonella. The third doc did the trick.
"If the treatment is inadequate, the disease will continue to progress." That is what I was told by Dr. Burrascano at a lyme conference when I posed a question to him about my treatment under my second lyme doc. This may be what is happening in your case.
I suggest you find a doctor who follows the Burrascano lyme treatment guidelines. That's how I and all my friends got rid of this disease from hell.
I strongly suggest you read and STUDY this document. It was written for doctors, so it is not easy to read, but it will give you your education on what good lyme treatment looks like.
Without this education, you are just sitting there waiting for the magic to happen. And, in many cases, the magic never happens. So, study the Guidelines and compare your doctor's treatment of you to what the Guidelines say good treatment looks like. Then, find a doctor who will treat your lyme disease the Burrascano way.
Contact the lyme support groups near you (see Support Groups on left side of page) to find out which doctors follow Burrascano. Also, find out from them which doctors are getting people well. You want to go to a doc who has gotten rid of lyme for at least 3 people. Get that kind of info from support groups. It shows that the doctor knows how to get rid of lyme disease.
Many doctors treat lyme, but few know enough to get rid of it for people.
I had undiagnosed lyme disease for 10 years. I got lousy lyme treatment for 2 years, then switched to a Burrascano type doctor and was finished with treatment in 1 year. It has now been over 5 1/2 years since I completed my treatment and I am still symptom free, enjoying my life.
I stick around LymeNet to point people to the good doctors so they don't have to spend so much time trying to get rid of this disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
been on orals 13 months, going on IV in January......need to move forward.....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
TF is right. For sure!
Re-read her post above.
Oral abx have certainly been effective in getting sick patients into long-term remission. IV abx are not automatically better or necessary. The IV picc line can become a dangerous source of new infection.
Anyone reading this: If you see NO improvement in LD symptoms after 4 to 6 months, address this with your doctor. If (s)he doesn't make a change in treatment that improves symptoms, FIND A BETTER LLMD!
NOTE to readers in general (not marshall62): If the patient has NOT been following the directives in Dr B's Treatment Guidelines (i.e. - still eating some gluten, still drinking some coffee, still having a soda sometimes, staying up late on the computer, thinking rules don't apply to them), then the patient may wish to stop wasting everyone's time and resources until such time the patient may become earnest in their desire to be healed.
posted
Wow. I've read Dr B's guidelines and wasn't sure if this was legit. Can anyone explain why no gluten, why no sugar, why no aerobic exercise, why no booze. And then there are docs who say all those vitamins are feeding the Lyme (I think Dr D. says this though I haven't asked him myself) Don't know what to make of it.
Next question of course is to find a LLMD that uses Dr B protocol and will give IVs if necessary. Anybody know where to get this kind of list for Mass, CT, NY?
-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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Sugar feeds yeast and the spirochetes. Gluten seems to be a problem for MANY lyme patients. Infections can cause this gluten intolerance. www.celiac.com
Booze overloads the liver and feeds yeast and keets. Do a search here.. this was discussed at length about a week ago.
Many Lyme patients are deficient in vitamins, so I think it would be foolish not to supplement what you are deficient in.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Contact the lyme support groups in those states to find out who follows Burrascano. See "Support Groups" on left side of page and pick the states you are interested in.
You want to get a lot of info on the doc you pick, so that you don't waste any more time. You want to ask which doc is getting rid of lyme for people, for example.
When you call the doc's office, ask if he follows Burrascano's protocol. Don't just go by what the support groups say. Check it with the doctor's office also.
And, once you pick a doctor, at the first appointment ask the doc directly if he follows Burrascano's protocol. That's the only way to be sure. Some doctors SAY they follow the protocol, but they really don't.
So, when you call the office, tell them this is very important to you. Tell them you only want to see the doc if he follows the Burrascano protocol.
Also, virtually every lyme patient has coinfections. You cannot get rid of lyme without also treating the coinfections. So, you want a doc who tests and treats coinfections.
And, you want a doc who treats coinfections based on symptoms since the coinfection tests aren't very good, just like the lyme test. So, before making the appointment, you want to ask if the doc treats coinfections and if he treats them based on symptoms (the Burrascano way) in spite of a negative coinfection test.
I have never met a lyme patient that did NOT have coinfections. Burrascano says that it is nearly universal that if a person has had lyme for at least a year, that person also has coinfections. ("A huge body of research and clinical experience has demonstrated the nearly universal phenomenon in chronic Lyme patients of co-infection with multiple tick-borne pathogens." page 4 of Guidelines) So, this is a very, very important point. You can't just focus on the lyme.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst or L form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babs is suspected, and require adherence to rules such as low carb diet, no alcohol, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
Burrascano is the lyme disease guru of the U.S. and of the world. His protocol is followed by doctors all over the world. I was told by one guy on Long Island that he runs into people all the time who were cured by Dr. B. Dr. B. had lyme disease himself.
Notice that weight lifting/calesthenics are REQUIRED. Must do a one hour routine every other day. My doc said that I would NEVER get well unless I began doing this exercise program.
Read in Burrascano how the exercise helps to clear the disease from the body. The following quote also explains why aerobic exercise is not allowed. It is all about getting your immune system strengthened. Lyme and babesiosis compromise your immune system, just like AIDS. So, you have to do many things to get it back to normal. It is not just antibiotics.
It is antibiotics, diet, exercise, and supplements. It takes all 4 to get rid of this complex disease.
"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." (page 31)
"a whole-body exercise program, consisting of light calisthenics and/or resistance training, using light resistance and many repetitions." (page 32)
The other Burrascano type doc I recommend to folks around here says the exact same thing to her patients. Exercise is a necessity! No alcohol is a necessity also. You want to boost your immune system. Alcohol weakens your immune system. Getting rid of lyme and coinfections will never happen until your immune system is strong. You have to not smoke and totally abstain from alcohol while treating lyme. Otherwise, you will never get well. The smoking weakens your immune system also.
You don't have to take all the supplements Burrascano says to take. Just take the ones he considers essential. Then, take those that treat the symptoms you happen to have.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I sure wish it was as easy as TF makes it sound.
In my opinion, the Dr B protocol may be fine for lyme, but for babs and bart -- it often takes even stronger meds and longer treatment than is listed in the guidelines. In fact, many of the newer meds have only become available in the last 2 or 3 years and obviously are missing from the guidelines which are several years old. I am referring to meds such as Factive and Coartem (Riamet) for example.
And then there are newer IV meds for lyme which are also missing from the guidelines -- Invanz, Tigecycline etc.
There really are more new options becoming available -- but unfortunately some of the LLMD's aren't willing to keep up with the new info.
In my opinion -- although it is expensive -- testing is absolutely essential. But again -- IGeneX is not the only lab. Without labs such as F lab and Clongen and Galaxy labs many people were missing the coinfections. Not sure yet about the track record of SpiroStat and a couple of other labs.
Due to the overlap in symptoms -- even the best of docs can't always say which coinfection someone has. And the meds for babs and bart really are not the same as lyme meds.
Marshall -- To answer your question -- yes I would say it is time to move on and find a doc who will treat coinfections and has more treatment options.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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