posted
I'm new to Lyme. I saw a bite 2 weeks ago but it could have been anything. Last week, on Sunday, I got sick (fever, chills, extreme fatigue--slept for 14 hours), AND the telltale bull's-eye rash appeared.
So I saw my doctor's office on Monday, got doxy, and began taking it. By Wednesday, the fever, chills, and fatigue disappeared but the rash has continued to grow, gotten redder (almost purple in the center), and become sore.
It's nasty looking. It's on my calf, and the calf muscle is tight and sore. Behind my knee feels taut too. My balance seemed worse on Wednesday than on Monday too, but I think that is now improving.
Do the abx take a while to work on recent infections? Could I have a coinfection that is making the rash worse and sensitive? Should I try another abx?
I realize that I'm fortunate to catch this early; admittedly I'm hoping to avoid a chronic condition.
One final aside: My doctor's office doesn't seem very Lyme-sophisticated. They had me take a blood test when I had a perfect bull's-eye. At least they did prescribe doxy. The test, of course, came out negative.
Thank you for your insights.
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Breaking up the text for easier reading for many here - Robin
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
A doctor who does not specialize in lyme disease will not give a person enough doxy to get rid of the infection.
I'll bet you are on 100 mg twice per day.
If you would like the name of a lyme specialist not far from you, let me know. You will pay $525 for the first visit, so it is not cheap. But, you will be treated properly and avoid having a case of chronic lyme disease.
You can get in with this doctor quickly right now, which is a rare opportunity.
He doesn't take insurance, but you can submit the bill to your insurance and get some reimbursement.
To reply to me, just click on the paper and pencil icon above my post.
I strongly urge you to go to a lyme specialist and nip this horrendous disease in the bud.
To get your education on this disease, read the Burrascano Lyme Treatment Guidelines found here:
"There are four types of antibiotics in general use for Bb treatment. The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common.
However, these high doses can be difficult to tolerate. For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration." (page 14)
Only a doctor who specializes in lyme disease will give you these high dosages.
And:
"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.
So, while the bulk of this document focuses of the more problematic chronic patient, strong emphasis is also placed on earlier stages of this illness where closest attention and care must be made." (page 3)
See also page 19 to learn how long you should be treated. Non-lyme specialists normally give about 2 weeks of doxy, but Burrascano says to give at least 6 weeks and to continue on meds until you have been symptom free for 1 month.
Glad you found LymeNet. Get to a specialist and this can have a happy ending. Hope I hear from you. (We don't post lyme doctors' names publicly, so you have to write to me for it.)
When he was in practice, Dr. Burrascano was the most successful lyme doctor on the planet. He treated lyme in a very endemic area for over 25 years. He was the #1 lyme disease pioneer. People came to him from every country in the world. So, read what he says and take it seriously.
I found out I had lyme disease about 12 years ago. I went through 2 other lyme doctors before I wised up and switched to a doctor who followed the Burrascano Guidelines. Under this doctor's care, I got well.
He gave me the high dosages of antibiotics that Burrascano says are required to get rid of this disease.
It is now over 9 years since I got rid of lyme disease and I am still symptom free, enjoying my life.
And, I have sent 5 of my friends to docs who follow Burrascano and they also have gotten rid of lyme disease. So, that is why I beleive in the Burrascano protocol. I have seen it work over and over again.
If you don't know about the major medical controversy surrounding this disease, here is a video you can watch done by a Boston TV station a number of years ago. It explains why your doctor and others who do not specialize in lyme disease are treating the disease so lightly. They believe that lyme is EASILY cured. But, the truth is, it is very difficult to cure.
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the Infectious Diseases Society of America (IDSA) plays in miseducating our doctors and making it difficult for a person to get good lyme treatment.
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Breaking up a couple paragraphs for easier reading for many here - Robin
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Actually, since you had consitutional symtpoms (fever, chills, slept so long, etc.), you are no longer in the "Early Localized" treatment category.
Now, you are in the "Disseminated Disease" category. So, the following is Burrascano's instructions on length of treatment:
"EARLY DISSEMINATED: Milder symptoms present for less than one year and not complicated by immune deficiency or prior steroid treatment:
1) Adults: oral therapy until no active disease for 4 to 8 weeks (4-6 months typical)
2) Pregnancy: As in localized disease, but treat throughout pregnancy.
3) Children: Oral therapy with duration based upon clinical response." (page 20)
Whatever you do, don't let any doctor give you any steroids of any kind. That can make lyme disease almost impossible to cure. Notice the reference to steroids in the quote above.
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