posted
I've been recently diagnosed with Lyme Disease after 5 - 6 years of having ongoing symptoms of extreme fatigue and just not feeling myself ( brain fog, trouble concentrating, sleep and digestive probs). Was diagnosed with Chronic Fatigue Syndrome shortly after having an " unknown" viral illness 5 years ago followed by vigorous lab testing ruling out all other possibilities ( including a few Lyme tests over the years).
Finally tested positive for Lyme and not sure if it is a recent infection ( my doc thinks its new based on mixed lab results, one positive one negative.) However I think that my Chronic Fatigue might have been Lyme all along.
So, Im wondering in my case where I may have had lyme for 5 years, is it possible to treat it and beat with only oral antibiotics ( doxycycline 100mg 2x a day for 30 days)?
Im also wondering if there is any sort of testing to determine how long you have had it and how far it has spread?
Not afraid to seek aggressive treatment, just want to see if it is necessary right away or if I should just start with the Doxycycline oral antibiotic for 30 days. I dont want to waste any more time! If these symptoms are because of Lyme i want them gone so i can keep up with my friends and live a normal life style of a 32 year old New Yorker. Tired of my friends calling me granny!
Any help would be greatly appreciated! Thank you!!
Posts: 15 | From New York City | Registered: Jun 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Hi Sa123, I was sick for probably 4 years before being diagnosed. I have very minor symptoms and then I got very ill. Not sure when I got sick but I have been treating on orals for 7 months now. A lot of people can get well on just orals so I wouldn't say its necessary to do IV treatments.
You should find a Lyme Literate Medical Doctor in Seeking a Doctor. They should test you with Igenex labs to test for any co-infection and I think this can determine how 'high' your load is of the bugs.
I think it's better to start on just doxy for a month or two. As the treatment can be pretty hard to handle if you just attack it right away with lots of drugs. Its probably not enough time to only treat for 30 days. If you have any co-infections you would need to address those also. I have Babesia, Bartonella and Lyme. Doxy made me feel better right away but with my other infections I wasn't 'cured' after 30 days.
I would suggest seeking aggressive treatment, just be aware of herx reactions...where you feel worse initially when killing off the bugs. You can feel pretty awful.
Hope this helps a little.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Many people get diagnosed after years of having lyme and get well with orals only. I had undiagnosed lyme for at least 10 years. I took orals only. In April, it was 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life. Lyme is a thing of my past.
Not everyone with lyme needs IV treatment. Get to a good lyme doctor who will test you for all the diseases the tick gave you and who will treat you for as long as it takes to get rid of this disease. This will likely be a minimum of a year and perhaps 2 years. That is not uncommon.
If you don't get to a really good doctor, you can treat for years and years. Many doctors treat lyme, but not many know how to get rid of it for a person. Your job is to find the doc who knows how to get rid of it.
You have one of the very best lyme doctors in New York State. If you can get in with him, that is what I would do.
30 days of doxy might do the trick if you start taking it within a week of the bite. These are the only people the 30 day treatment may work for. You have a much more complex disease once the lyme has been in your body for at least a year. That's why you now need a doctor who specializes in lyme disease. 30 days of doxy will do nothing for you.
I agree with you that your fatigue has likely been lyme all along.
If you don't want to waste any more time with the lyme fatigue and only half living thanks to this disease, then get to an outstanding lyme doctor.
I strongly suggest you read and study the Burrascano lyme treatment guidelines found here:
They will give you an education on the disease that you have and what good lyme treatment looks like.
The more you learn about lyme disease, the better you will be able to pinpoint when you likely got it. Generally, a lyme doc will say, "Whenever your story starts, that's likely when you got lyme." So, it sounds like you have had it for 5 or 6 years.
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 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, 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.
Also, a Boston TV station did a great show on lyme disease about 2 years ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
Here is a quote from page 3 of Burrascano, explaining how, once you have had lyme for at least a year, you have a much more complex disease:
"A very important issue is the definition of �Chronic Lyme Disease�. Based on my clinical data and the latest published information, I offer the following definition. To be said to have chronic LB, these three criteria must be present:
1. Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels).
2. Have persistent major neurologic involvement (such as encephalitis/encephalopathy, meningitis, etc.) or active arthritic manifestations (active synovitis).
3. Still have active infection with B. burgdorferi (Bb), regardless of prior antibiotic therapy (if any).
Chronic Lyme is an altogether different illness than earlier stages, mainly because of the inhibitory effect on the immune system (Bb has been demonstrated in vitro to both inhibit and kill B- and T-cells, and will decrease the count of the CD-57 subset of the natural killer cells). As a result, not only is the infection with Bb perpetuated and allowed to advance, but the entire issue of co-infections arises. Ticks may contain and transmit to the host a multitude of potential pathogens. The clinical presentation of Lyme therefore reflects which pathogens are present and in what proportion. Apparently, in early infections, before extensive damage to the immune system has occurred, if the germ load of the co-infectors is low, and the Lyme is treated, many of the other ticktransmitted microbes can be contained and eliminated by the immune system. However, in the chronic patient, because of the inhibited defenses, the individual components of the co-infection are now active enough so that they too add to features of the illness and must be treated. In addition, many latent infections which may havepre-dated the tick bite, for example herpes viruses, can reactivate, thus adding to the illness."
As you can see, chronic lyme disease compromises your immune system (like AIDS, according to my lyme doctor). So, part of your treatment will be working on boosting your immune system so that it can eventually work normally again.
Also, few, if ANY, people with lyme for 5 years have only lyme disease. You have numerous diseases that a lyme doctor will have to diagnose and treat. Nearly everyone with lyme for at least a year has babesiosis and bartonella, for example.
Your brain fog and trouble concentrating tell you that you have lyme in your brain, which is common once you have had lyme for a while. All chronic lyme patients suffer with these things and with trying to sleep. (Lyme affects the sleep center of the brain, per my lyme doc.)
This can all be reversed with good lyme treatment.
These are all the reasons why you need a doctor who understands this disease. A GP may think they understand lyme, but everything they know about it is WRONG.
Glad you found this forum. Spend your time reading and learning and let us help you get to a great doctor right off the bat and get back your life!
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