posted
Can anyone estimate how long antibiotics need to be be taken ?
My husband has had Lyme for 10+years, although it wasn't diagnosed/treated for over a year. He had the 30day intravenous antibiotics when diagnosed. That didn't nothing.
Since then we have been to several other docs including the A famous Clinic ("he'll get better or he won't ") and a LLMD who was not very interested.
For the past year he has seen a LLMD , who has prescribed varying 3 antibiotics. At first we were very encouraged at first because my husband's nerve pain improved, although his memory problems remain
This LLMD is very odd to say the least. He spends more time talking about non related subjects than my husband's needs. He will not answer question about how long for meds, or what to expect.
He is also very disorganized and forgetful. He keeps losing reports, and contradicts what he has said previously.
Did I mention we have to drive 6 hours to see him?
Can anyone give an estimate on length of treatment? How long do we give a "flaky" doc before trying somewhere else?
Posts: 6 | From Erie Pa | Registered: Jul 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I strongly urge every lyme patient to get to the very best lyme doctor they can possibly afford. The reason? This gives you the best chance of getting rid of this disease.
Lyme is very difficult to cure. If your doc forgets important information about hubby's case and loses reports, it is difficult to see how he could be the best doc you can afford.
Right now, there is a top notch lyme doctor in Washington, D.C. who has opened her practice to new patients after nearly 3 years of NOT taking new patients.
You only have to appear in person at the doc's office once every 6 months. She does phone appointments the other months and email for issues in between (even on weekends and holidays).
So, if I were you, I would get hubby to this doctor. Let me know if you want her name and prices and patient reports describing how she treats.
In my experience (15 years of being in the lyme world), there are just a handful of lyme specialists in the east that know enough to get your husband well. I would get him to one of these few doctors.
The trouble is, many aren't taking new patients, one has a 1 year wait to get in, and others are a lot further away from you. So, in my estimation, this D.C. doc is the one for you.
This doc has great credentials which I can send you. Price is not bad after first 2 appointments. And, she often will say that testing is NOT necessary.
Have you compared your husband's treatment to the Burrascano Guidelines? If not, you really should.
I wasted 2 years with 2 docs who didn't know enough to cure me. Then, I studies Burrascano, traveled to hear him speak, and realized that he knew SO much more than the docs I had seen/was seeing.
I then called a different lyme support group and asked for a doc who did everything Burrascano says to do. Bingo! With that doc, I was symptom free in 8 months and finished with treatment in 13 months.
I had had undiagnosed lyme, babesiosis, and bartonella for at least 10 years before a doc finally tested me for lyme. Still, with a Burrascano type doc, I got well. It has now been over 12 years since I completed my lyme treatment and I am still symptom free. I have the same brain and same life I had BEFORE lyme disease.
I do not blame your current doc for not telling you how long treatment will take. Treatment is open-ended meaning that you treat until all symptoms are gone.
But, if the doc does not have enough expertise to get rid of hubby's symptoms, then you will be treating with him forever.
I believe that a 1 year try is certainly giving this doc a fair chance at helping him. So, if you are not satisfied and want to go to a top notch doc, just let me know.
After I got well, I sent at least 5 of my friends to Burrascano type doctors and they also all got well.
Now, I have been helping folks on LymeNet find good doctors for at least 13 years. I have over 7,000 emails from lyme patients, many telling me about their doctors. That is how I have amassed so much current info about lyme doctors in the east.
I have become familiar with the lyme docs in western Pa, central Pa., and some in Ohio.
I know all the doctors in Maryland, most in New Jersey, and many in northern Virginia. And, I know all the top docs in the east and those who follow Burrascano. So, my recommendation to you is based on all of this knowledge.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics taken together 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 babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease specialty 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 babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, 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).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
When he was practicing, he was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
With this disease, there is NO SUBSTITUTE for an educated patient/caregiver. Once I saw that the treatment I was receiving from my first 2 doctors did NOT line up with Burrascano, I switched and that made all the difference.
Since there are so very few lyme docs who could successfully handle a case like your husband's, you really have to accept that if he is to get well, you are going to have to travel to the east coast where the best lyme docs in the east are.
We have so much more lyme here. That is what gives the doctors the ability to develop so much more expertise.
If you want to write to me privately, just click on the envelope icon above my post. I will be very happy to help you further. And, I can tell you what I know about your current doctor. My guess right now is that you are seeing Dr. S. in Pa.
Let me know what you want to do.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF just wanted to say thanks for the recommendation from last year, you literally helped save my son's life with your information and guidance so THANK YOU! No doctor here in Texas would listen and believe us.
He's doing much better using the protocol and my wife (who passed it to him at birth, which we discovered through the doc) is also under the doctors care and is just starting on the long road of treatment.
We're now close to scaling back his meds now to see what happens but fingers crossed, we're under the great care of the doctor you recommended and its just amazing the support we get and is such an amazing human being to boot.
Thank you again, I'm not sure I can ever repay you properly for your advise!
Posts: 4 | From Austin, TX | Registered: Oct 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
abenamou, thank you for giving me this update. I am thrilled! I will add your report to the many great patient reports I have on this doc.
Your story is of a 7 year old boy who was totally normal and then his life became a disaster with terrible pain and frequent visits to the ER to no avail.
Now, you are saying that this lyme specialist determined your child had lyme from birth. So, 7 years of being totally normal and then a crash due to gestational lyme.
Many on this site need to see that lyme can do such things. Mainstream doctors would NEVER believe that a person could have lyme for 7 years and never have any symptoms or sickness. And, then, all of a sudden, become unbelievably ill.
Right now I am dealing with an 85 year old lady that was bitten by something (horsefly?) at a dude ranch 12 years ago, and only now after 2 surgeries one after another, is she exhibiting some classic lyme symptoms such as weakness and fatigue, swollen lymph nodes, brain problems, tingling in hands, etc..
Her primary care doctor totally dismisses the possibility that this could be connected to a bite 12 years ago, even though the bite caused a very large swelling at the time.
So, your update to me is quite timely. I will use it to help this lady see that with lyme, such things are possible.
This student is looking for a lyme doctor near Austin. He has been sick for a number of years and has tried various lyme treatments, including going to Germany, to no avail. Perhaps if he heard from you regarding your experience with Austin docs, he would see his way clear to going to Washington, D.C. and hopefully he will then get better also.
Posts: 9931 | From Maryland | Registered: Dec 2007
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