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» LymeNet Flash » Questions and Discussion » Medical Questions » Beyond frustrated....

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Author Topic: Beyond frustrated....
bfunk
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So after going through a variety of oral antibiotics for all of 2011, treating co-infections, and 6 months of IV rocephin, I seemed to be a lot better. Not perfect, but a huge improvement. Came off IV in January and felt really good on just one oral antibiotic.

Now going through a big relapse. I do not have every symptom I had before, but it's still rather severe to keep me out of work again. I am so frustrated. Why do I feel that I'm back to square one???? Any info appreciated.

Posts: 30 | From New York | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
TF
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From Burrascano:

"LATE DISSEMINATED: present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity:

1) Adults and pregnancy: extended I.V. therapy (14 or more weeks), then oral or IM, if effective, to same endpoint. Combination therapy with at least two dissimilar antibiotics almost always needed." (page 20)

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

I don't know if you ever used steroids while you had lyme (perhaps while undiagnosed). If so, that makes your case much more difficult to get rid of.

The doc should keep you on IV until you are no longer experiencing any benefit from it. That could take 6 mo, 9 mo, or more.

While on IV, you should also be on flagyl. I remember you once replied to me that you did take flagyl while on the IV. But, did you take it continuously near the end of IV until you no longer had any reaction to it? Or did you do short pulses of it during the IV?

Burrascano has said that flagyl has to be taken at least 14 days in a row to work. When my lyme doc cured me of lyme, he had me on flagyl continuously along with my other antibiotic. THen, he kept me on flagyl for 30 more days while he went on to treat me for bartonella.

So, if you were not on good lyme treatment while on the IV, that is a strike against you. And, if you did not stay on the IV long enough, that is a strike against you.

As the quote above says, once you stop IV, you are to go to IM (shots in the butt) if they are effective (meaning, if you don't backslide on them) or oral if they are effective.

In all cases, you should be on at least 2 antibiotics for lyme once you come off of IV.

If the orals and IM don't keep you from backsliding, then you have to go back on IV and be retreated. That is what the Burrascano quote is saying.

IV does NOT get rid of all the lyme germs. It brings down the germ load considerably. But, you still need heavy duty lyme treatment when you come off of IV. If lesser treatments don't keep you from backsliding, then you go back on the IV. That is what Burrascano is saying to do.

It may be time to seriously consider going to another lyme doctor who knows a lot more than your current doctor.

Without someone with a lot of expertise in this disease, you can treat year after year after year.

I wasted 2 years with an inferior doctor. I backslid each time he told me to try to stop my meds. (He had me on only one lyme med the entire time.)

When he told me that it looked like I was just one of those people who was going to have to stay on meds the rest of my life, I switched to a doctor who followed the Burrascano protocol.

Under his care, I got rid of lyme, bartonella and babesiosis all in 13 months. That was 7 years ago.

So, the takeaway is that the doc is the key to getting rid of this disease. Can't emphasize that enough.

As Burrascano once said in response to a question I posed to him, "If the therapy is inadequate, the disease will continue to progress."

Your disease is continuing to progress under your current doctor's therapy.

You should be frustrated. Do something different and you could get an entirely different result. Changing doctors (I know it can be traumatic) was the best medical decision I ever made in my life.

I just want to point out that the Burrascano protocol is a 4-pronged approach:

antibiotics
supplements
diet, and
exercise (1 continous hour or weight lifting every OTHER day)

All 4 are needed to get rid of this disease. My final doc told me that if I didn't do the Burrascano exercise requirement, I would NEVER get rid of this disease.

Other docs who follow Burrascano tell their patients the same thing. This particular type of exercise strengthens your immune system, which has to fight the lyme germs left in your body when your treatment ends.

The exercise does many other things also that help to effect a cure. Read it in Burrascano.

The supplements are likewise essential to restore vital nutrients that these diseases have depleted your body of.

If you don't treat all the coinfections you have, again, you won't be able to ever get rid of lyme.

Without a full description of your diseases, symptoms, past treatment, test results, etc. I can't possibly tell where your treatment has fallen down. But, a top notch lyme doctor automatically treats all lyme patients for babesiosis and bartonella also.

Such a doctor automatically gives the patient all the supplements they need. Plus a lot, lot more.

Lyme is an extremely complex disease and very difficult to get rid of. That's why I recommend to everyone that they get to a top notch doc if they can possibly afford it. That gives you the best chance of getting rid of your disease.

Many doctors treat lyme, but only a few know enough to get rid of it for a person. Your job is to find one of those few.

There is a top notch lyme doc in New York state. Send me a private message if you want the name.

See my post on what makes a top notch lyme doctor. It is here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/115161?

It can also be found at the top of the Medical Questions forum under "Important Info About Lyme and Cos."

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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Very important question -- how quickly did you relapse?

The first time hubby did IV rocephin back in 2003 he was only on it 2 months -- only improved maybe 25%. But he started losing ground in just a couple of days and within a week or two almost all of the improvements went away.

For him it was mainly due to bartonella or BLO but he also had untreated babesia at that time. And back then no cyst busters were used. And he probably had ehrlichia/anaplasma also which was not treated either.

I would definitely try to rule out coinfections -- although I highly doubt that lyme is actually gone.

But if you can eliminate the coinfections then you could go on low dose maintenance therapy for the lyme.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
TF
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Yes, the rule as I understand it is if you relapse in 2 weeks (for example), that indicates an untreated/undertreated coinfection.

The coinfections grow fast and so can cause a fast relapse.

Lyme is slower growing, so you would relapse in a longer time--a month or more--if it was lyme making you sick again. Maybe would take 2-3 months to relapse if it is just lyme holding you back.

With my lousy lyme doctor, I was back at square one, symptom-wise, in 2 weeks off meds. (Felt just as bad as when I started with the doctor.) That's because I had babs and bart and he never treated them at all. Didn't believe coinfections were common.

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glm1111
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I would check into treating for parasites/worms an often overlooked co-infection of Lyme. Google symptoms and do a search on here for parasites.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
aperture
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Is it common for Lyme and co. to come back even more virulent after stopping treatment too soon?

--------------------
aperture

Posts: 551 | From Louisville, KY | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
   

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