posted
Thank you for all your help so far!! I posted last week after I got a pos bloodtest for Lyme and because of what I read here and your feedback I decided I needed to find someone that would help me get the right treatment.
History: Tick bite on 5/23. Symptoms started a week later (fatigue, severe muscle pain, stiff neck, headache, low grade fever, foggy brain). Had a red circle rash last Monday and went to PCP. Bells palsy (mild.. can raise my eye brows, close my eye, chew, taste).
PCP put me on 100 mg doxy twice a day for 3 weeks. I needed a second opinion.
Today I went to an NP that is famiilar with ilads. She is going to treat me with 200 mg tabs of doxy twice a day for 60 days. Also, Bicillian 1.2 mil units inject 2 x week for 2 months. This is for the central nervous system angle. Also a B12 supplement and probiotics.
I think this is a good approach based on what I've read. I'd love to hear from others if you think this is going to get me on track. THANK YOU!
Posts: 9 | From Massachusetts | Registered: Jun 2012
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posted
EXCELLENT!!! You are SO lucky to have found this doctor!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had undiagnosed lyme disease for at least 10 years. After going through 2 other lyme doctors who couldn't get me well, I found a doctor who had enough expertise to cure me. Under this doctor, I completed my lyme treatment in 2005 and have been symptom-free ever since--7 years. Praise God!
However, in 2008, I was bitten again and got a bulls eye rash at the site of the bite. I got to my lyme doctor within a week of the bite. Here is how he treated me:
Doxycycline for 4 weeks and Bactrim DS twice per day for 2 weeks. If no symptoms, stop Bactrim after 2 weeks.
The idea was that the doxy would treat lyme and the Bactrim would treat babesiosis and bartonella--the 2 most common coinfections.
This worked for me. I never had any symptoms except the bulls eye. I got a mild herx on day 2 or 3 on this treatment. Other than that, I was fine, so I was finished with treatment in 30 days.
My doctor is a rather well-known lyme doctor. I wanted to point out to you that he treated me for "the Big 3" as they call them--lyme, babs, and bart. Whereas, you are being treated only for lyme disease.
In the state of Maryland (and perhaps in all of New England), virtually every person with lyme also has babs and bart, so this treatment that I received for my bite made perfect sense to me.
Perhaps you would want to bring up coinfections to your practitioner. By adding the Bactrim to your protocol, you cover the 2 most common coinfections.
That's how my excellent lyme doctor treated my bite and I think it is a good example for others to follow.
Doctors with less experience in lyme disease ignore the coinfections. This dooms the patient to developing chronic lyme disease since all of these diseases work together to keep the patient ill. You CAN'T get rid of lyme without getting rid of the coinfections also.
Since you are having symptoms, you will have to continue the Bactrim DS beyond the 2 weeks. This way, you are covered for the 3 major illnesses the ticks give us. (Doxy covers ehrlichia also, so you will be treating for 4 possible diseases, which is excellent.)
I would think that since you are having so many symptoms immediately after your bite, your doctor would also be concerned about coinfections.
If I were you, I would want to get with the very best lyme doctor I could possibly see. It is easiest to cure this disease in the beginning.
You say your NP is "familiar with ILADS." That would not be good enough for me. I would want a doc who has treated hundreds if not thousands of lyme patients and be known for being able to cure people of this disease, especially if gotten early.
Here is a quote for you from the Burrascano Guidelines:
"GENERAL PRINCIPLES
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)
I do not want to cause you concern. But, this is the only time you will have to catch all of these diseases early.
If your doctor is not well-known by the lyme support groups in your area and does not come highly recommended by lyme groups, then why not stay on this treatment while you get in line to see a top notch lyme doctor.
With a top notch doctor, you have the very, very best chance of getting rid of this disease and never having it resurface on you. That is my desire for you.
I strongly urge you to STUDY the Burrascano Guidelines and get your education on this disease. It is actually a complex of diseases. The tick never gives you just one disease. That is what we have learned.
If you weren't so sick, I would maybe not be concerned about treating the coinfections simultaneously. But, you have gotten an awful lot of serious symptoms very shortly after your bite. That, to me, means that your disease should be taken very, very seriously and you should be given full-blown lyme treatment.
I would want to "over-treat" rather than under-treat to be sure that this goes away for you as quickly as possible.
By the way, you fall under Burrascano's category of "Early Disseminated" disease based on all of the constitutional symptoms you are having. (With my bite, since I had no symptoms except the rash, I was "Early Localized." So, your disease is further along than mine was when I was treated with the doxy and Bactrim DS.)
Disseminated means that the diseases have spread from the original site of the bite to various other parts of your body. Read about treatment for this stage on pages 19- 20:
"DISSEMINATED DISEASE - Multiple lesions, constitutional symptoms, lymphadenopathy, or any other manifestations of dissemination.
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."
I hope you know not to let anyone give you any steroid or other immune-suppressant drug unless you happen to be in a life-threatening situation. Many with lyme do not know that steroids (cortisone, including injections, pills, sprays, etc.) can cause "serious, permanent damage" to a lyme patient. If you want to read more about this, it is in Burrascano on page 12.
If you would like the names of some top notch lyme doctors, just send me a private message and I will tell you the ones I know.
I am very, very happy that you went beyond your PCP for lyme care. However, I think you would be better off to go even a step beyond the person who is helping you now.
I suffered for so many years with this disease, this is why I advise you as I do, and I believe Burrascano would advise you the same.
Let me know if I can help you further. I would be happy to do so.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF.. thanks for your feedback. The NP got her lyme education with Burrascano so I feel confident with what she's said so far. She took a ton of blood yesterday to test for the co-infections and said she would treat them depending on how the bloodwork came back. She came recommended to me by a couple of people on this website so hopefully she has a good reputation. I called around to many places and they all had 3-4 month waits. I was so thankful that this person agreed to see me when she found out I was just diagnosed. I can't agree more that I need help ASAP. Maybe she will have me on Bactrim when she gets the results back. I will ask her. Thanks again!
Posts: 9 | From Massachusetts | Registered: Jun 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, if she is going to treat you for coinfections "depending on how the bloodwork came back" then that sounds like she thinks that coinfection testing is reliable.
Coinfection testing is worse than lyme testing. Just so you know that.
From page 23 of Burrascano:
"DIAGNOSTIC TESTS Diagnostic tests are insensitive and problematic. There are at least thirteen, and possibly as many as two dozen Babesia forms found in ticks, yet we can currently only test for B. microti and WA-1 with our serologic and nuclear tests. Standard blood smears reportedly are reliable for only the first two weeks of infection, thus are not useful for diagnosing later infections and milder ones including carrier states where the germ load is too low to be detected. Therefore, multiple diagnostic test methods are available and each have their own benefits and limitations and often several tests must be done. Be prepared to treat based on clinical presentation, even with negative tests."
Then, on page 24, regarding bartonella (BLO):
"Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is very insensitive. Therefore, the diagnosis is a clinical one, based on the above points [meaninng, the symptoms of bartonella previously mentioned]."
Just want to point these things out to you.
I suggest you be on the look-out for symptoms of babesiosis and bartonella and report these to your doctor if they occur.
As I said, my lyme doctor follows the Burrascano protocol, and he treated me right off the bat for the "Big 3" and I didn't have any symptoms at all. Something for you to think about.
Also, notice that Burrascano wants you treated for lyme disease for 4-8 weeks past your symptom-free point. So, you will need a lot more than 60 days of treatment.
I think it is wonderful that this doctor fitted you in to her schedule based on the fact that you had a recent bite. Just questioning her thinking process.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF.. I have looked at the symptoms for Babesia and Bartonella and they are so similar to Lyme. How can I tell the difference if the bloodwork isn't going to give the whole picture? Are these infections not treatable with doxy and bicillin?
Right now, my symptoms have improved over time last week when I started the 100 mg of doxy and I've been on 200 mg for 4 doses. Today, my thigh feels weak (I had VERY bad muscle pain 2 weeks ago), slight stiff neck and the bells palsy is about 50% better. NO headache, fever, night sweats, runny nose and I have my appetite back.
Manybites.. Flaygl looks like it's an antibiotic. Does this treat Babs and Bart symptoms? I'm on doxy and will be doing bicillin shots. Do I need to request a third antibiotic?
I appreciate all the input! Thank you!
Posts: 9 | From Massachusetts | Registered: Jun 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Babesia and bartonella CANNOT be treated with doxy and bicillin. That is my message to you.
With your present treatment, you are not covered for the 3 major illnesses that the tick gives nearly everyone.
By adding Bactrim DS, you WILL be covered. I don't see why your doctor would not give you this med considering what is at stake.
The only thing I can think is that she doesn't have enough expertise to know this. You really, really need to find out what kind of a reputation this doctor has in the lyme community.
Also, when evaulating people's opinions of lyme doctors, it is often helpful to find out how much experience they have with lyme disease and the lyme doctors in our nation. New people may think that many doctors are good based on their limited lyme experience, whereas I have been involved with lyme and the lyme community for 10 years. I have hundreds if not thousands of patient reports on the nation's lyme doctors.
I know that the best lyme doctors treat patients for lyme, babs, and bart simultaneously right off the bat. They have learned that this is the most effective treatment.
It take a lot of expertise to come up with such a sophisticated treatment protocol, because many meds cannot be taken with others.
So, my conclusion is that your doctor likely does not know that Bactrim DS will treat both babs and bart (many lyme doctors don't know that) and/or she doesn't know that it can be combined with doxy. Many lyme doctors do NOT know this.
Do you know how many years your doctor has been treating lyme? I have found that it takes at least 10 years of treating a lot of lyme patients to become a top notch lyme doctor.
If you want to read my post about what makes a lyme doctor top notch, it is saved at the top of the Medical Questions forum under "Important Info about Lyme and Cos" or just click here:
Also, if you read the Burrascano Guidelines, you will see that he requires the lyme patient to take a number of supplements. Meanwhile, from what you have said, you are only being told to take B12 and probiotics.
I urge you to begin taking every supplement that Burrascano says is a required supplement for lyme patients. This discussion starts on page 28. Then, on page 29, he lists additional supplements that must be added for neurological symptoms. You have neurological symptoms (foggy brain, etc.) So, you should also take these.
To me, it is very likely that you got lyme prior to May 2012 since you have gotten such severe symptoms so soon after your May bite. Believe me, I consider this a very, very real possibility. It is not typical, in my experience, for a person to get foggy brain so quickly after their first lyme exposure. Rather, that often comes after a person has had "smouldering" or low-grade lyme for years and then gets another bite that overwhelms their immune system, thus allowing the germs to go throughout the body and brain and give you full-blown lyme for the first time.
I am sorry to tell you these things. With this disease, it really pays to be an educated patient. You can't just sit back and wait for the magic to happen. If you do, too often the magic doesn't happen.
Rather, with lyme and coinfections, you must educate yourself and find the very, very best lyme doctor you can afford. That is what gives you the best chance of getting rid of this disease.
It all depends on the expertise of the doctor whether and how quickly you will recover.
To me it is sad that your doctor has chosen to treat you only for lyme at this stage of your illness rather than hitting all of the diseases that you almost surely have. You can read in Burrascano about how common the coinfections are. In recent talks, he and other top lyme doctors are saying to treat for all 3 illnesses (lyme, babs, and bart). So, what I have advised you is not strange at all.
I looked at your prior posts, and other posters also told you to be sure you are treated for coinfections. But, you are not being treated for them.
Regarding flagyl and tindamax, these are also lyme medications. They treat the cyst form of lyme. What you must know is that lyme will change into the cyst form (it curls up into a ball and forms a hard shell around itself) in the presence of antibiotics that kill it in the spirochete form. Doxy kills lyme in the spirochete form. So, lyme will form cysts in the presence of doxy. But, doxy cannot penetrate the cyst form of lyme. That is why you are being advised to take flagyl in addition to doxy. This way, you will be killing 2 forms of lyme at the same time. This is always necessary for those with chronic lyme.
You can read about this on pages 12-13 of Burrascano and also at page 21 under Advanced Treatment Options.
Here is where Burrascano advises that this is necessary for the chronic patient:
"Therefore, the chronically infected patient who has resistant disease may need to have metronidazole (or tinidazole) added to the regimen. More details are provided in the section on treatment options." (page 13)
I have not suggested flagyl or tindamax because it does not appear that you are in the chronic lyme stage at this time. However, if after you reflect long and hard, you determine that you have had lyme symptoms for a much longer time than one month, then flagyl would be a good addition to your therapy, and even a necessity.
Finally, I did not want to bring this up to you previously because I know it is difficult for you to handle hearing that your current treatment may be inadequate. (You thought you were now "safe" and "taken care of" and here we are telling you that you may not be.) But, the fact is that I have never heard of any lyme doctor giving Bicillin injections to a person who has had lyme disease for just one month.
This treatment is generally reserved for those who cannot get well with oral medications only. So, this is another oddity about how your doctor has chosen to treat your case.
See page 16 where Burrascano recommends Bicillin injections for those patients with CHRONIC lyme disease:
"BENZATHINE PENICILLIN Comparative studies published by Fallon et. al. at Columbia University have shown that parenteral therapy is superior to oral therapy in chronic patients. Options include intramuscular long acting penicillin G (benzathine penicillin, or �Bicillin-LA�) or intravenous antibiotics."
It is my understanding that it takes about 6 months for Bicillin injections to have an effect that is noticeable by the patient. So, I was extremely surprised when you stated that you were starting these injections.
I hope that this will spur you to do more research on your current doctor. Again, I am willing to give you the names of top notch lyme doctors so that you can consider getting an appointment with one of them. I suggest you arrange such an appointment (and, yes, it will be 3 months in the future) and you can always cancel it when the date approaches if you no longer need the appointment. However, if it turns out that you need it, then you will know that you are in the hands of a top notch lyme doctor and will get the very best treatment for your diseases.
I am so sorry that this illness is this way. Please STUDY the Burrascano Guidelines and learn about this disease. Then, you will be more qualified to evaluate your doctor's expertise and your treatment. You will also be able to ask more intelligent questions. Your health depends on it. With this disease, you must become educated.
I wasted 2 years with a lousy lyme doctor, taking antibiotics continually, but only getting a certain amount of improvement. I stay on this site to help others get to the best lyme doctors right away and get rid of their diseases as quickly as possible rather than spending years treating it.
One final quote for you:
"Babesia infection is becoming more commonly recognized, especially in patients who already have Lyme Disease. It has been published that as many as 66% of Lyme patients show serologic evidence of co-infection with Babesia microti. It has also been reported that Babesia infections can range in severity from mild, subclinical infection, to fulminant, potentially life threatening illness. Subclinical infection is often missed because the symptoms are incorrectly ascribed to Lyme. Babesia infections, even mild ones, may recur even after treatment and cause severe illness. This phenomenon has been reported to occur at any time, including up to several years after the initial infection!" (page 23)
Notice that as many as 66% of all lyme patients show evidence of babesiosis in their blood when tested. Since the babs test is so inaccurate, that tells you that more than 66% of lyme patients likely have babesia. So, it is likely close to 100% of lyme patients with babesiosis also.
I agree with you that babs symptoms are often the same as lyme symptoms, so you can't go by symptoms alone in determining treatment. And, as I said previously, it is inadvisable to treat a person for babs only if a babs test is positive.
The most prudent course it to automatically treat all lyme patients for babs. I myself had no babs symptoms that I knew of, yet my blood test through Igenex showed that I had babs. It also showed that I had bart and I had no symptoms of that disease either that I knew of at the time. So, symptoms cannot be relied upon for diagnosis either.
I hope your doctor told you that you must stay out of the sun while taking doxy. If you are driving, you are advised to wear gloves so that your hands don't burn through the windshield.
Doxy causes a special doxy burn that is much much worse than a sunburn. It doesn't present like a sunburn either. You won't get red first. So, you must avoid sun at all costs.
Also, to avoid nausea and stomach upset, I hope she told you to take the doxy in the middle of a meal. First eat half the meal, then take the doxy, then eat the other half of the meal.
And, don't lay down for at least 1/2 hour after taking the doxy. If you do, the pill could come up your throat and dissolve in your throat, burning it terribly.
These things should be mentioned in the insert that came with the medication. There is a post on Medical Questions now by a person who got the burned throat from not drinking enough water after taking the doxy. And doxy burn posts are typical here also. In fact, many lyme doctors do not give people doxy in the summer. They use another antibiotic instead in summertime because the doxy is so limiting on summer activities.
I had the doxy burn with my first lyme doctor. He apologized to me when I reported it to him. He said he should have warned me and he switched me to another medication instead for the summer. I got burned on the 4th of July on my hands and thought I would have to go to the ER due to the extreme pain which would not even be helped by narcotic pain killers.
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