Topic: during treatment- how should I be feeling? how do I know treatment isn't working
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am wondering about my llmds course of action. It seems so slow-minded. LIke let's go 4 more weeks and see what happens with this or that.
I know I like things done yesterday, but I am wondering ----
if I herx on doxy the first3 weeks straight at beginning of treatment, then feel kind of good (like sort of getting back to "normal") the 4th week, then get sick from doxy and have to stop for 2 weeks then feel slipping back, then get on new meds
azithromycin and bactrim combo now for about 2.5 weeks. herx /symptoms come and go daily or every three days or so and I know that is normal,
but I haven't had any major herx since the first couple weeks in the beginning on the doxy.
is this normal? like even steven with symptoms, no big herx? or, does this mean I need more oomph?
When people say it took them 2-3-4+ years to finally get better, are they talking about steady progress? or radical herx along with plateaued times?
How do I know things are progressing? stalled? when do I know if this dr isn't for me? do I ever know that??
thanks for your help!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
What I had to learn is that my lyme and Bart cycle every 26 to 30 days, so that gave me patience to deal with the long term treatment.
You'll get to recognize the herxing and the die off as you cycle it each month.
Also, it gives me time to work on boosting my immune system, changing diet, and other things to prepare for a day without antibiotics. Good luck and hang in there.
Susan
Posts: 83 | From Sarasota, Fla | Registered: Apr 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
ok, I see what you mean. I am just wondering if I can tell the difference between herx and normal every day symptoms.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I felt like %&$# nearly every day. Worse on the monthly herxing.
Some are lucky and don't herx much .. or not at all.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
LisaK, Start a daily journal. Put it right next to all your meds, fresh page every day, date, write down what you take/ time
and how you feel that day. TF has talked about it, has a rating system I can't remember--
While treating my dd and myself I wrote everything down- except my symptoms that day-
So now, I don't know if/ what my infection cycles are, except week leading up to full moon-
Today I bought a new little notebook, and am forcing myself to write everything down again, including symptom type experiences for the day.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You ask how to know if this doctor is for you. Well, do you want Burrascano style treatment? If so, I don't think this doctor is for you.
See this quote for example:
"COMBINATION THERAPY
Treatment of chronic Lyme usually requires combinations of antibiotics. There are four reasons for this:
1. TWO COMPARTMENTS- Bb can be found in both the fluid and the tissue compartments, yet no single antibiotic currently used to treat Bb infections will be effective in both compartments. This is one reason for the need to use combination therapy in the more ill patient. A logical combination might use, for example, azithromycin plus a penicillin." (page 12)
You are not on such a combination. It seems you are being given azith alone for lyme. Bactrim treats bart and babs.
Lyme can evade a single antibiotic. Read the rest of that section of Burrascano.
Also, see if your dosages compare to what Burrascano says are required to kill lyme.
Not too many doctors follow Burrascano anymore because they are afraid of persecution. You can read that in "Cure Unknown."
With this disease it really pays for the patient to educate himself on what good lyme treatment looks like. Study the Burrascano Guidelines. Then, you can evauate how you are being treated.
Patients who don't do that generally waste a lot of time in treatment with inadequate doctors.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- TF is right. One single antibiotic will likely just send you on a wild goose chase for years and years, along the lines of what TF posted above. Resistance is a big part of that. Also:
How just doxycycline (or some other antibiotics, alone) can cause chronic lyme:
Bacteriostatic vs. Bacteriocidal consideration -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I have read dr B guidlines and I think they really sound smart. I am also reading buhner. I like his thing too
I cannot find my dose chart for the hydro Keebler and I was going by memory when I said dose, so I will check back later when I find it- don't know what I did with that!
I am on azithro and bactrim since I am allergic to penicillins. I know- this creates a problem for me. This is in my mind for sure. I feel so much better on something
but i am worried it won't be enough??????
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
you are right Keebler- he said I would "only take 5mg" but it will end up being 5mg each DOSE. I don't like that idea.
it is Cortef. half dose for three days. the gradually increase.
He did say though that it would not be like the prednisone I was on 20 yrs ago for my asthma in that I would be getting such a small dose plus be able to stop whenever I want without weaning.
So, you see, this is what I find is happening. I want to believe all my limenet firneds, but then most people say to listen to dr. So conflicting. I have no idea what I need to do because you can find 1, 2, 3...++++ different things people say about any one treatment
makes me crazy.
I REALLY wish I would find a dr that will do what I say! HAHAHAHAHA and that would be to follow dr b and add in buhner. That sits right with me.
but that is like a fantasy. like winning the lottery.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes dr B page 13. I agree and felt like I was really progressing on doxy, but remember I had that terrible burn since I took it without food.
I am still in pain with burning and the stupid GI clinic forgot to call me back, and now my apt isn't until Nov. 11. Is this something my llmd should be addressing? he doesn't.
I probably have an ulcer
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I see my bloodwork, and it says I have a high Mycoplasma Pneumoniae antibody.
llmd said it means nothing since I didn't have high high IGm. is that true?
also see here high for Candida Albicans IGG, but not IGA or IGM.
He also doesn't think I need treatment for that, but I am not sure I agree.
The test says right there that in immunocompromised patients have blunted responses and should be considered with clinical findings. But when I mentiond how I have burning in my private area he didn't think that was anything to treat.
I have been on candida albicans homeopathics for years and when I don't take it I can tell I get very itchy and burny in many places.
See, I am not sure if he wants to just go slow? or doesn't know what hes doing? but I thought I would get help for all things that stood out right away. I want to feel better with everything- not just lessened symptoms of lyme.
sorry if I am repeating myself. I just am SO frustrated right now
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Are you taking tons of probiotics and watching your diet?? You don't want that Candida to get out of control.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am taking lots of probiotics, but exactly how much is best? pill form
I started Kefir today
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Don't get caught up in the one example Burrascano gave--azithromycin plus a penicillin.
There are plenty of possible antibiotic combos you can take that don't involve a penicillin. We all have to work around allergies, etc.
The point is that you are not on any combo for lyme. That is not good lyme treatment per Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I see. so what do I do? I doubt my dr will listen to me about that.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You can't change how a lyme doctor treats.
You have to find a doctor who treats the way you want treated and become his patient.
That is the patient's job--to find a match between what he wants and what the doctor offers. That is the only way this thing works.
Posts: 9931 | From Maryland | Registered: Dec 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
not many are willing to say over the phone or in person exactly what they will do for you unless you make expensive apt.
I guess the very pricey drs do, but now I spent all my money on this man, plus I need to stay on abx? and he wont keep giving me rx while I shop for new dr.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
That is true. You won't know the treatment protocol for a doctor by contacting them. You can ask here if someone else knows that particular doctor.
They can pm you with details so you have an idea about how they treat.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Right. You find out from other patients how the doctor treats.
For example, the doctors I have recommended to you treat with high-dose combinations of antibiotics. They follow Burrascano.
You could be on as many as 5 medications at a time if you were their patient.
Lisa, you are not the first person who has been in your situation. Nearly all lyme patients do not pick a good doctor on their first try.
Then, when they realize they are not getting good care, they inquire here, find a good doctor, get an appointment, and they stay with their current doctor until they have had one appointment with the new doctor and know that they want to switch to the new doctor.
You never drop one doctor until you have tried out a new doctor and decide you want him.
The more you do your homework in advance (meaning, finding out for sure how a doctor treats, how much expertise he has, etc.), the fewer times you will have to change doctors.
Many doctors SAY they follow Burrascano, but they don't really. You get information about what is really going on by talking to lots of former patients.
And, some doctors don't have enough expertise to work around a penicillin allergy, for example. But, those with a lot of expertise know how to do these things. You can't go to a person who only knows how to treat lyme one way. If you are allergic to their one way, they don't have an alternative way to treat. This is common, actually.
So, you really have to inquire a lot to make a good doctor choice.
Posts: 9931 | From Maryland | Registered: Dec 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks faithful and TF. I will rview the list again TF.
I found most people here are so nice, but I think what happens is twofold (for me)
!- I am a very intense person and I think too much as per what I have been told. Born this way- not gonna change.
That being said, most people do not give details the way I need them. - the amount I need
2- I think while most people here are very nice and willing to share since that is the main reason they probably stay here for so long (assuming this)
- but I found in general when someone has so much experience with anything they tend to forget that the novices need way more details than what they typically remember to give.
This is just my observation of course. In other words, sometimes I feel like I am annoying people with questions since I don't get the answers I really need or little to no response at all.
Maybe it is the way I ask? but see if I say "what did you think of that dr., what are they like?" I am assuming that people with give all the details, but 99% of people say
"That dr. was pretty good". or, "I heard he is good"
I don't really get the lowdown. I will try and ask then more specifically in the future if my tick brain can allow it! haha
I do review on a regular basis but there is so much to go over I get dizzy and shut down. I will have to keep trudging on!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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nefferdun
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Member # 20157
posted
I couldn't tolerate more than two ABX at once and I got Bb into remission, but I did take the most powerful drugs. I took doxy and then Ketek. I tried to go after the cysts with grapefruit seed extract. I also took diflucan for the yeast and it has activity against Bb.
After a year I was not having the 28 day flares any more and my symptoms had changed. I began treatment for Bartonella. I floxed on Levaquin and had tendonitis. I couldn't tolerate any drug prescribed so I had to rely on massive herbs to try to keep my ground, for five months. Then I went back on drugs, again just one or two at a time.
You can tell when the drug is working because you have a massive herx after which you should begin to feel better. In my case, and I think other people too, my symptoms changed and I got sick again as another infection took over. It was confusing to me. I thought the drug was failing and I was relapsing.
It is easy to go into denial about the number of infections we can get from one tick. I had five that I know of. I had to treat them individually. It took about a year for each infection but looking back, I see I didn't realize when my symptoms were changing so I wasted time.
PR is the last infection and incurable but I control it with diet and ivermectin. I notice diflucan knocks things back down too. I am doing pretty well.
You have to advocate for yourself. Don't just keep taking the same drugs if you are not improving. I believe if you are not getting better, then what you are doing is not working (could be you are not hitting the right infection) or you are not detoxing.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
nefferdun, how do you and others know that you can't tolerate abx or, as you say, more than one at a time? is it from symptoms you arrive at this or dr tells you, what?
I am still not sure what constitutes a "flair". I seem to have different flairs every day just about
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
After awhile you build up a tolerance to certain drugs, and you have to switch. The reverse is true, also. You can tolerate a difficult drug later once you knock the infections down a bit.
By the time I titrated up the Flagyl, I could tolerate large doses easily. This attacked the cyst form.
Recovery is a slow process for some with perhaps, some relapses, but progress is forward. Later, you get so busy with making up for lost time, you forget you were ever so sick.
This, too, shall pass.
Good luck.
Posts: 1954 | From Illinois | Registered: Aug 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks Cheryl! that gives me good hope!
I am trying to see patterns that people talk about ....seems like I am really bothered by the full moon and then the week or 10 days after. IDk, I can't really put my finger on it
I just feel sick most of the time and have like 3 days a month I can realy get things done.
I can't wait to feel good again!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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