posted
Recently finished my first course of oral abx (8wks) of flagyl/ceftin/zithro for neuro symptoms. I responded well so my LLMD decided to take me off abx temporarily to see how my body and immune system responds. After a few days off the abx, new symptoms kicked in, shortness of breath and chest pain. We discussed this possibly being Babesia however he wants me to go back on Flagyl only for about a week to see how my new symptoms respond, suggesting I may see an improvement, worsening or no change at all. My LLMD would then add another abx or determine treatment strategy based on my response. What I am wondering and didn't get to discuss, is as I understand it Flagyl doesn't kill anything but its purpose is to get to the cyst form of Lyme and break it up. With that in mind I'm not understanding this strategy for my new symptoms, especially in terms of seeing a possible improvement. Is the thought that Flagyl may get Lyme on the move somewhere else in my body, perhaps resulting in an improvment of my new symptoms? Is the Flagyl only approach a means to better determine if it's Lyme or Babesia? My LLMD seems terrific, very knowledgeable and I plan to discuss this when we speak shorlty, however until then I would appreciate any thoughts that may help clarify this approach for me.
Thanks
Posts: 10 | From New York | Registered: Feb 2010
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Posts: 10 | From New York | Registered: Feb 2010
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Sounds like he's trying to rule some thing(s) in, or out, regards these "new" chest-area symptoms. And in that way better determine where to go from here. You can always ask him about this on your next visit.
I know my LLMD had me on Flagyl, only, after nearly a year of abx. I was to understand it was to "treat the cyst form" now that the wild (spirochete) form had been knocked down/ out.
BTW, I found that lo-level Ativan (lorazepam) was great for knocking out the continuous, specific-spot (lower rib) chest pain I experienced during my 1st few acute months. Atleast for a few hours. It subsided as I continued the Lyme treatments. Not sure if it's appropriate for you, though. I had no shortness of breath.
-------------------- I'm no doctor... but I play Golf! Posts: 1233 | From Dover, NH | Registered: Sep 2008
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TF
Frequent Contributor (5K+ posts)
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Sorry, but I never heard of treating someone for lyme for 8 weeks and then stopping meds to see how the patient responds.
A good lyme doctor knows exactly how someone with lyme would respond in these circumstances--their symptoms would come back and it wouldn't take long.
Doesn't sound like a knowledgeable doctor to me.
Here's what Burrascano says:
"Treatment Categories
EARLY LOCALIZED - Single erythema migrans with no constitutional symptoms:
1) Adults: oral therapy- must continue until symptom and sign free for at least one month, with a 6 week minimum. 2) Pregnancy: 1st and 2nd trimesters: I.V. X 30 days then oral X 6 weeks 3rd trimester: Oral therapy X 6+ weeks as above. Any trimester- test for Babesia and Ehrlichia 3) Children: oral therapy for 6+ weeks.
DISSEMINATED DISEASE - Multiple lesions, constitutional symptoms, lymphadenopathy, or any other
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.
PARENTERAL ALTERNATIVES for more ill patients and those unresponsive to or intolerant of oral medications:
1) Adults and children: I.V. therapy until clearly improved, with a 6 week minimum. Follow with oral therapy or IM benzathine penicillin until no active disease for 6-8 weeks. I.V. may have to be resumed if oral or IM therapy fails. 2) Pregnancy: IV then oral therapy as above.
LATE DISSEMINATED: present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity:
1) Adults and pregnancy: extended I.V. therapy (14 or more weeks), then oral or IM, if effective, to same endpoint. Combination therapy with at least two dissimilar antibiotics almost always needed. 2) Children: IV therapy for 6 or more weeks, then oral or IM follow up as above. Combination therapy usually needed." (pages 19-20)
If you have been sick for less than a year, he says to treat you until you are symptom-free for 1-2 months, with 4-6 months being the typical amount of time to be treated.
If you have been sick longer than a year, treatment will take longer and meds should not be stopped until you are symptom-free for 2 months.
A lyme doc doesn't stop meds to try and figure out if the patient has a coinfection. Coinfections are diagnosed based on symptoms, test results, and response to medications that target that particular coinfection.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I dont think its fair to say what a "good" lyme doctor would do. Many Doctors pulse anti-biotics or have people take a week of here or there to investigate other things. I think one of the most important things is that the Dr is flexible, when a Dr only goes by the book (or by Dr B's outline) he isnt treating the patient hes just following instructions. ALWAYS ask your Dr any questions you have-- its so important you understand what is going on and why. And lets be honest 1 wk off abx isnt going to effect your recovery time-- this takes years to get over.
Just make sure to ask your Dr whats up and to help you understand his rationale.
Posts: 844 | From CA | Registered: Apr 2010
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Lymeorsomething
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Member # 16359
posted
It may be the doc I had. I was doing well then this doc had me take a break and it screwed me up pretty well.
However, it's good that you are on something. You definitely want to be symptom free for a few mos. before ceasing everything.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had undiagnosed lyme disease (and babesiosis and bartonella) for 10 years.
It has now been over 5 years since I completed my lyme treatment, and I am still symptom-free, enjoying my life.
I went through 2 other lyme doctors who did not know enough to cure me before I found the doc that got me well.
Now, I stick around LYmeNet to point people to the good doctors so they don't have to treat this horrible disease year after year after year.
I wasted 2 years with a doc whose treatment was sub-par. When I found my Burrascano doc, he treated me for all 3 diseases in 1 year and I was finished! I had my health back. This guy knew how to get me well.
So, I have a passion for pointing people to the good lyme doctors. Just so you know, that's where I'm coming from and that's why I am still on this board.
I have been on Lyment for 7 or more years.
I and all of my friends got rid of lyme disease and its coinfections by going to docs who followed the Burrascano protocol. So, that is the treatment method I believe in. I saw it work over and over again with many people.
I suggest you read the Burrascano guidelines so that you will know how to evaluate your doc's treatment of you. That is what I did, and when I did, I finally knew that I had to move on to a new doc. It was the best decision I ever made. It gave me back my life.
They are not an easy read because they were written to teach other doctors how to successfully treat lyme disease. But, they will give you your bachelor's degree in the disease that you have. Don't just sit back and wait for the doc to work his magic. That's what I did at first. It is better to educate yourself and be able to evaluate how you are being treated. I didn't get anywhere with this disease until I took that step.
There are many other protocols for treating lyme disease. You have to decide what protocol makes the most sense to you, then find a doctor who uses that protocol.
If you don't know what protocol your doctor uses, you need to ask him. Then, read up on that protocol so that you understand it. Then, if you don't agree with it, you know you need to change doctors.
Perhaps your doc just does his own thing rather than follow any particular protocol. I went to docs like that too. If so, you need to know that also. Then, if you are not comfortable with that, you can look for a doc who treats in a way that gives you more confidence.
ALL of my friends with lyme got rid of their diseases by going to the 2 Burrascano type doctors that I recommend near my home. Some had this disease for over 20 years.
Become an educated patient, and learn how to evaluate your lyme doctor's treatment. Then, you have the best chance of not wasting years on inadequate treatment.
If you ever have the opportunity to go to a lyme conference, be sure to go. You will learn so much by hearing the speakers, the people who are the foremost ones in this field. If you get yourself on a mailing list for a lyme support group in your state (see Support Groups on the left side of the page), they will let you know if any speakers are coming to your area. You will NEVER regret going to one of these meetings. It really helped to clarify for me the important principles of treating lyme disease.
Just trying to help people avoid the mistakes I made along the way.
Wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hey TF, could you PM me those two docs? I think I may be seeing one of them now but if not, I'd like to keep that info for the future. Thanks
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Listen to TF! Lyme treatment <> good Lyme treatment automatically.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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nyrjoe, I ditto TF.
Since you have Lyme neuroborreliosis, then you have "Late Lyme." For someone with LD a long time, 8 wks will NOT clear this infection out. You need to be on appropriate abx with adequate dosing for 3 months beyond the "no symptoms" mark.
We want you to get back into remission, NOT remain borderline (and hence, another blood host).
Sounds like your LLMD is still learning or literally "practicing" on you re: Babs. Please ask him/her who their LL mentor is. Find out what research publication this LLMD follows most closely.
Have you printed out Burrascano's guidelines? Put them in a 3-hole punch binder and add your own dividers. Read, highlight, re-read...
Are you following all of Burrascano's suggestions for supportive therapies?
From your other posts, i'm wondering if you may have missed some crucial newbie intro info.
Or are you actually following some other protocol?
Sorry, i am tired. But i read all TF wrote and agree 100%. In your area, there are numerous opportunities for support group mtgs and LL scientific presentations that will keep you focused on the most effective methods shown to get patients into remission.
posted
Folks, thanks for the replies. My LLMD follows Burrascano's guidelines; in fact he worked with him for several years. I do need to get some clarity on this latest approach as some of the points made in your posts were my understanding as well. However I can say, there was never any discussion of me stopping treatment or being in remission. It seems based on my medical history and progress to that point there was interest to see how my immune system would do now on it's own (took another cd-57), then resume treatment (determine which abx, etc.) with that information in-hand. One point I should make clear if I didn't in my original post, I didn't have co-infection symptoms at this point. When these symptoms appeared, I was instructed to resume Flagyl and follow-up for additional abx. Overall I feel like I'm in good hands but of course will have to gauge in the coming weeks how things progress.
Posts: 10 | From New York | Registered: Feb 2010
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Cool! We're rooting for you, nyrjoe!
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