posted
Hello, I've had some symptoms flareup lately and need some encouragement that it's possible to get better. I know this is a story that has been repeated many times here.
I've been on abx for 6 full months now and have had ups and downs over this time but never have I felt like I'm getting better.
**My Question** Hypothetically, if I was taking the correct abx, how long should it take to start "getting better"? It's already been 6 months and I'm pretty discouraged with the progress.
How long would you recommend to keep on my current protocol before trying something else? To recap my current protocol. Ceftin, Rifampin, Plaquenil daily and Flagyl 3 days per week. **End Question**
Here's a little background on me:
Bit by tick April 28, 2010 - Had rash. Took 2 weeks of amoxicillin starting about 5 or 6 days after (not long enough obviously). Thought it was ok then about a month later symptoms started.
Joint pain - started about a month and a half after bite in hands. Still having joint, tendon, muscle, ligament pains. Swollen finger joints. Knees, elbows, wrists, neck, basically all joints.
Headache - started about 2 1/2 months after bite. Have had it nonstop ever since. Got on Doxy for about 3 months once this started.
Had a positive Western Blot IgM for bands 41 and 23. IgG was negative. Quest labs.
My main ongoing symptoms are joint pain, headaches, neck pain, and fibromyalgia type tendon and muscle pain. Achy tendons and muscles that are very tender to pressure, sort of like they are badly bruised.
My abx history so far:
*Doxycycline (7/27/10)- about 3 months and stopped. *Flagyl - have pulsed it for a week at a time for a couple of months. I have been pulsing it 3 days a week the last month or so. *Ceftin - (10/8/10 - present) *Plaquenil - (10/21 - present) *Tons of vitamins, minerals, probiotics, and herbs that I've found through my research.
I do eat a strict low carb/sugar/starch diet and have seen a LLMD once. These headaches and pains are killing me.
Thank you,
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sorry to say but there is no standard answer to your question of how long it should take to start feeling better. It can vary tremendously.
Also, the doses of the meds are just as important as the combinations you are taking. You can see proper dosages in the Burrascano lyme treatment guidelines.
It is not unusual for it to take 6 months before improvement is noticed. However, you have only been on the ceftin/plaquenil combo since 10/21 which is not even 3 months. And, the flagyl pulsing you just started a month ago. So, that is not very long.
You don't say when you started the rifampin.
Because lyme is such a complex disease and nearly always involves more than one infection, the best way to treat it is to go to a doctor who has treated thousands of lyme patients and who has a record of getting people well.
A lyme doctor generally has monthly appointments with the patient, at least in the beginning until progress is being seen.
I hope you are not trying to treat yourself. That doesn't have much chance of success.
The first thing a good lyme doctor does is test the patient for all possible coinfections plus get a complete symptom list. Based on this, he determines what diseases the patient has.
Some top notch lyme docs treat patients for lyme, babesiosis, and bartonella all at once starting from the first appointment.
If orals don't produce any improvement, then they may switch the patient to IM (intramuscular injections) or even IV therapy.
I hope this gives you some ideas of things to look into.
The doc is the key to getting rid of this disease. I can't stress that enough. Lots of doctors treat lyme disease, but not many know how to get rid of it for someone.
In March, it will be 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life. But, I had to try a few lyme doctors to achieve this success. My third lyme doctor followed the Burrascano lyme treatment guidelines. He is the one who got rid of this horrendous disease for me. I had lyme, babesiosis, and bartonella. I had them for at least 10 years before getting my diagnosis.
I suggest you get to the very best lyme doctor you can afford as quickly as you can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Only I went off on a wild goose chase for 6 months after I was initially treated for Lyme because every doctor I saw said your lyme was cured, this is something else.
I did not get well and my most uncomfortable symptom was a chronic headache/bordering migraine at all times. That headache lasted 9 months and 3 days.
It was after 3 months of Babesia treatment that it started to dissipate. My other Babesia symptoms left then too.
But I am still struggling with the rest of the symptoms you describe. And my LLMD is treating me for Bartonella and Lyme.
I have been in treatment for 7 months myself and when I started I was certain I was going to be well by now.
So, while I'm not well by a long shot, I am better than I was. And after 5 months we switched my med's up. And only now, almost 2 months into the switch I'm afraid to say I seem to be a tiny bit better. (Don't want to jinx it.)
I have to agree with TF, get the best LLMD you can and let them figure you out.
I wish you good health, feeling so bad IS very scary.
Posts: 6 | From Little House in the Big Woods | Registered: Dec 2010
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posted
TF, I started on the rifampin the week after Thanksgiving. Maybe 11/30. I've gotten the exact date written down somewhere. I have been taking the flagyl longer than a month, I just started doing the 3 days a week thing about 2 months ago. Before that I was pulsing it for a week at a time every 3rd week or so (just experimenting with the dosing).
My headache has really flared up today, along with my joint symptoms. Something must have happened to flare me up in the last week or so. I had a couple of cups of coffee several days ago (I haven't been drinking coffee since diagnosis) but I don't really think that's what caused the flareup.
What should I expect with my joints? Will they continually get worse and worse? Will they get to a certain point and stabalize? Will they get better? Or the headache for that matter.
Having this disease sometimes makes me wish there was a reset button on this life, it's going to be a rough ride the rest of my life if it's always going to be like this.
Posts: 92 | From Georgia | Registered: Aug 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Nobody can tell you what to expect with your joints or headache. Lyme is not a disease that always take a certain path or where the doctors can predict what it will do. No way.
I went to 2 lyme conferences at which Dr. Joseph Burrascano spoke. He answered a question I submitted about how I could be getting a new, terrible symptom (trigeminal neuralgia) while on high dose antibiotics. His answer was, "If the treatment is inadequate, the disease will continue to progress."
That's how I knew I had to switch lyme doctors.
Also, lyme can attack any bodily system. Heart, muscles, intestinal tract, sexual system, brain and nervous system, etc. It is not limited to joints and headaches, which is all you are experiencing right now. Nobody can predict when or if it will attack other systems in your body.
This is a really serious disease. As time goes by, you can get more and more symptoms that are totally different from what you have right now. When it starts attacking your brain, you could need others to help you find good medical care. That's why I say that you have the most options early in the disease--like now.
Also, the el-cheapo way just doesn't work with this disease. So, stop trying to treat yourself. You never went to med school and you are your first lyme patient. You are experimenting on yourself. That just isn't going to work.
Study the Burrascano Guidelines. Read through the symptom list on pages 9-10. Get serious about wanting your life back. Find the money to make it happen.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, lyme disease flares at approximately every 28 days. (Read it in Burrascano.) So, if you keep track of when these bad days occur, you may see that they are lyme flares.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, Well how long did it take before you started getting better? Or totally better?
I'm not really totally treating myself. I've gone to 4 different Drs.
1. General Practitioner - useless. Denied that I had lyme. 2. General Practitioner - better but not up to date on lyme. I showed him the burrascano guidelines and he gave me doxy and flagyl. I exausted his knowledge quickly. 3. Rheumotologist - She was recommended on lymenet when I requested a Dr. as "lyme knowledgeable". I could tell she was almost afraid to treat me because she was afraid to lose her license for treating lyme. She charged me $1800 for one visit. She's the one that started me on the Ceftin. Didn't go back there. 4. Finally went to a LLMD 11/24. Added Rifampin to the mix.
I haven't gone back to the LLMD yet. I figured I'd give the abx a chance to see what they're going to do.
Thanks your your replies.
Posts: 92 | From Georgia | Registered: Aug 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I just answered that question today on this thread:
I believe your lyme doc should see you monthly at first. That is what the good ones all do. Patient input very much drives the doctor's treatment of you. The doc should be asking you a lot of questions.
Many good lyme doctors have the patient keep a daily chart of their symptoms and have them rate each day so that they can review it at each appointment, looking for cycles, improvements, herxes, etc.
A good lyme doc will keep a patient on a certain antibiotic mix for 2-3 months before declaring it is time to change.
There is no sense changing things up every few weeks or every month. That isn't the way it is with this disease. It takes at least 2 months to know if a med combo is going to work or not.
And, if the meds make you feel worse, that can be a sign that they are working, meaning killing germs for you. The herxheimer reaction.
With this disease, it is a marathon, not a sprint. Treatment takes months or years. Everything happens very slowly, especially improvements. They happen almost imperceptibly.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, this is so helpful, as I've been seeking to up/change my medication to have more effect, even though I've been on my current meds for just under 2 months. I guess I have to try for more patience and not push my body so hard.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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2 Ceftin a day, 2 Rifampin a day, 1 Plaquenil a day, and 2 Flagyl a day (3 days a week).
I take 1 Ceftin, 1 Rifampin, 1 plaquenil about an hour after lunch. Then about 10pm I'll take 1 Ceftin, 1 Rifampin. And I add Flagyl to that 3 days a week.
I don't know what the best time of day or sequence to take the meds is really. I asked the LLMD about how to take them and she said it was ok to take them all at once..so that's what I've been doing.
It may be better to take them in the morning, I'm not sure. When I was taking doxy I was taking it in the morning on an empty stomach and it would always make me feel nauseated for about an hour. So I've been taking my current abx after lunch to have something on my stomach.
I wonder if my dosages are too low. It's just hard to know what to do.
TF, good info.
Thanks,
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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TF
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posted
WG,
Taking doxy on an empty stomach causes a lot of problems like nausea, reflux, etc. so my doc said to always take it with food. Many people find they have to take it in the middle of a meal--take food before AND after it, in other words.
This is how you compare your treatment to the Burrascano Guidelines:
1. Look up the generic name of each drug you are taking (by using the Internet, etc.).
For Ceftin, it is cefuroxime axetil.
2. Pull up the Burrascano Guidelines on-line. Make sure you are at the beginning of the document.
3. Use the "Find" function (Control+F) to bring up the "find" box.
4. Type the generic name of your drug in the "find" box. Then, hit enter over and over.
This will take you to each place in the document where the word is found. It will be highlighted for you.
5. Read everything Burrascano says about each drug.
If you do this, you will find that Burrascano discusses Ceftin on pages 14 and 18. Here is what he says:
"Cefuroxime axetil (Ceftin), a second generation agent, is also effective against staph and thus is useful in treating atypical erythema migrans that may represent a mixed infection that contains some of the more common skin pathogens in addition to Bb. Because this agent�s G.I. side effects and high cost, it is not often used as first line drug. As with the penicillins, try to achieve high, sustained blood and tissue levels by frequent dosing and/or the use of probenecid. Measure peak and trough blood levels when possible." (page 14)
"Antibiotic Choices and Doses...
ORAL THERAPY: Always check blood levels when using agents marked with an *, and adjust dose to achieve a peak level above ten and a trough greater than three.
...
*Cefuroxime axetil- Oral alternative that may be effective in amoxicillin and doxycycline failures. Useful in EM rashes co-infected with common skin pathogens. Adults and pregnancy: 1g q12h and adjust." (page 18)
So, page 18 says that the appropriate dose of Ceftin is 1 gram (1,000 mg) every 12 hours. Adjust this dosage to achieve a peak level above 10 and a trough above 3.
Look at the dosage of the Ceftin pills you have been prescribed and compare that to the Burrascano dosages.
Also, you are taking the Ceftin at 1 p.m. and 10 p.m. So, you go 15 hours without a Ceftin from the time of your evening dose until your afternoon dose. Instead, I would take the Ceftin every 12 hours. (In general, if you are told to take a med twice per day, that means every 12 hours; 3 times per day means every 8 hours.)
So, take the Ceftin after breakfast to avoid GI problems and take it again 12 hours later.
I hope this helps people to use the Guidelines to effectively compare their treatment to Burrascano's recommendations and also to understand their treatment.
You can always ask your doctor which diseases each medication is treating. This way, you have a better idea of what is going on and what you are being treated for.
If the doc says you are treating lyme and bartonella, for example, then you can read the lyme and bartonella treatment sections of Burrascano to see how your treatment compares to Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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posted
Here is a site that tells rifampin dosages and some tips for taking rifampin:
posted
TF, Do you have any residual effects from having lyme? or is it completely "gone"?
Posts: 92 | From Georgia | Registered: Aug 2010
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TF
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It is completely gone. I am exactly the same as I was before lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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nefferdun
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posted
Just want to add that your protocol does not cover babesia. When your pain is one sided and migratory with monthly flares, it is lyme but when it is on both sides of your body it is often a co-infection. Babesia also causes headaches. I had them every day for a long time and thought they were migraines.
I did not realize I had babesia for two years. I did not bother with tests because I was told the strain of lyme here did not test. I thought I could determine what I had just by symptoms.
But symptoms overlap and sometimes we do not have the classic symptoms which define the disease. As you have been on abx for several months, it might be a good idea to get tested.
What has happened to me in the course of my treatment is that the infection I am treating goes dormant and another one emerges.
Many times I felt I was relapsing or just not getting better when in fact it was another infection coming out that the drugs I was using did not cover.
As you have not been sick very long, I would wonder too why the drugs are taking so long to work for you. I was sick for a year and a half before being diagnosed and starting doxy. I was miserable the first month with herxing but then began to feel better.
I was doing well in the summer but by the winter I was very sick again and a LLMD diagnosed me with bartonella.
Followed same course, getting better and worse, only to get very sick again, to find out I also had babesia. Who knows what will be next.
-------------------- 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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