posted
I got Lyme disease in 1998 in NJ. Doxycycline for 30 days. Remission. Only symptom I had post treatment that I really noticed was an exaggerated reaction to alcohol which was intermittent. I knew nothing about diet control. Fast forward to today with serious burns in 2006 with long rx of pain medication, 2007-8 depression Lexapro, 2014-2016 dental surgery lots of pain meds/steroids/antibiotics for 2 years with poor diet. No management by LLMD. What did I know. Crashed and burned March 2 years ago. Now trying to learn how to come out of it. My lyme is active and diet is very restricted. Will a 30 day cycle of doxycycline put this back into remission or stand a good chance of doing so or should I request a different or combination of ABX? Any help or guidance based on experience and not just what you have read would be appreciated. Thanks
Posts: 3 | From Destin Florida | Registered: Jun 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If your lyme has been making you sick for the last 2 years, 30 days of doxycycline will not be enough.
Now, you will have to treat for much longer and most likely with combinations of antibiotics. So, you now need to get to a doctor who specializes in lyme disease. One that treats only lyme patients all day long would be the best as that doctor will have more expertise than a doc who just treats lyme occasionally.
Lyme is very difficult to cure when it resurfaces like yours has. I suggest you now read and STUDY the Burrascano Lyme Treatment Guidelines found here:
"In general, you can think of LB as having three categories: acute, early disseminated, and chronic. The sooner treatment is begun after the start of the infection, the higher the success rate. However, since it is easiest to cure early disease, this category of LB must be taken VERY seriously. Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word." (p. 3)
See that last sentence especially.
I would look for a doctor who follows the Burrascano Protocol if I were you. That is what got me and at least 5 of my friends well.
I would try to avoid steroids if at all possible until you get back to good health.
"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (p. 4)
Steroids alone can reactivate lyme in a person whose immune system is struggling to control lyme disease.
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (p. 12)
So, if I were you, I would get a good lyme doctor and begin treating lyme disease again, get tested for all coinfections, take the supplements recommended by Burrascano, eat the diet he recommends, and do the exercise he says is necessary to restore your immune system so that this does not happen to you again.
The exercise is one continuous hour of weightlifting every other day--a full body workout each time. You will see this discussed starting at page 31.
When lyme comes back years after your initial illness, it is a very complex disease that is extremely difficult to cure.
The doc is the key to getting rid of it now. So, get the very best lyme doctor you can possibly afford.
I had undiagnosed lyme disease for at least 10 years before a doctor finally figured out what was wrong with me. I went through a few lyme doctors until I found one that knew enough to get rid of it for me.
If you are able to travel to see a really good lyme specialist, let me know and I can send you information on a great lyme doctor in Washington, D.C. who is now taking new patients again after 2 1/2 years of not taking new patients.
You only have to appear in person once every 6 months, so that is not much travel at all. You do telephone appointments each month with the doc and use email to handle questions that arise between appointments.
This doctor is top notch. There is nobody in Florida that I recommend to treat lyme. In fact, once you go south of Washington, D.C. there are few to no top notch lyme doctors. So, I recommend that everyone in the south come north for good treatment.
I believe that this is what you will have to do to get well at this stage of your disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there on the Emerald Coast,
So sorry to hear of the many problems you've been having since your original diagnosis. Bless your heart.
It is very possible the "in-between" stuff (from first treatment to two years ago) was also related to or negatively affected by the Lyme, unfortunately.
But, if you want to take a nice drive SOUTH along the Gulf Coast you can find help in Florida along the Nature Coast.
I don't believe 30 days of Doxy will address the situation to the point you won't have a relapse, but you could start with that in hopes it will knock out some of the active spirochetes.
Might make you feel a little less miserable?
If you go to www.FloridaLyme.org and check the menu to your left you'll see DOCTOR REFERRALS. That will take you to a site with a listing of Florida health care professionals that treat Lyme disease.
Some are very good and some take insurance if that is a concern.
As for your diet being "very restricted"... is that because you can't eat certain foods, or you are just trying to eat better?
posted
Sugar causes muscle pain all over. Trying now to adhere to Paleo. I am going to call a Dr. I know for an initial round of Doxy but would like to know what mg / how strong / dosage to ask for. He may say no but is is worth the call. That might make me feel a bit better while trying to sort out who to see and where and why.
Posts: 3 | From Destin Florida | Registered: Jun 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Doses of doxy depends (should depend) on your weight. Here are the general guidelines used for those with a tick bite or early Lyme (rash, flu symptoms).
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