posted
Any suggestions for major fatigue kicking in after starting doxycycline??
[ 11-09-2013, 09:45 AM: Message edited by: jamielett ]
Posts: 43 | From ny | Registered: Nov 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
its normal. if you are starting to treat lyme you are in for a battle. in the beginning i think its best if you can rest and let the meds and your body fight. if you must work or take care of children...im sure many will be here soon to give you help
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Can you cut back on the dose?
Be sure to drink plenty of water, preferably with fresh lemon or lime juice. If things get really bad take over the counter activated charcoal.
Fatigue is a symptom of herxing. You could be reacting to the doxy and also to the toxins from the bacteria dying.
This is just the tip of the iceburg. However, eventually it does get better.
Good luck.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I just started the doxy a month ago and was told that this is chronic Lyme so many more months of meds to come. I do work a full time job and its very difficult! Trying to find tips on how to beat this while still living life. I can't not work.
Posts: 43 | From ny | Registered: Nov 2013
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posted
I can ask my doctor if I can cut back on the dose. Not sure. Also, what do you mean it's just the tip of the iceburg? I didn't know your not suppose to lay down for an hour. How come?
Posts: 43 | From ny | Registered: Nov 2013
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posted
I'm just in the process of finding an LLMD. My regular doctor Told me just to take the doxycycline with a light snack, not in the middle of the meal and I found that it was making me so incredibly nauseous. So I switched to eating it with food and it's so much better.
Yes… It is so very incredibly difficult to be working and I can't imagine if there is more to come… That is not encouraging news for the night!! I'm new to the Lyme world and just learning What an evil disease this is. Posts: 43 | From ny | Registered: Nov 2013
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posted
What exactly is Herxing? And any suggestions on how to deal with it and make it less intense especially while working?
Posts: 43 | From ny | Registered: Nov 2013
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posted
Thanks...I'll look at the link.
Posts: 43 | From ny | Registered: Nov 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The definition of a herx:
"Several days after the onset of appropriate antibiotic therapy, symptoms often flare due to lysis of the spirochetes with release of increased amount of antigenic material and possibly bacterial toxins. This is referred to as a Jarisch Herxheimer-like reaction." (page 17)
To deal with a herx, drink lots of water and cut up lemons and squeeze them into the water. Water flushes out your system and the lemons are a natural cleanser of the body.
You can also take Alka Seltzer Gold and squeeze lemon into the water. A top lyme doc says that most feel better in hours after the Alka Seltzer. It helps your body get rid of the toxins (poisons) from the dead bacteria. You can do this 3 times per day when herxing.
I was told to drink lots of water with lemons in it throughout treatment. It made my herxes mild, including the first one.
It is now 8 1/2 years since I completed my lyme treatment, and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
I suggest you read and study the document I cited above--the Burrascano Lyme Treatment Guidelines. They are not an easy read because they were written to doctors, but they will give you your education on the disease that you have.
This education is the most valuable thing you can possess as you work to get rid of this disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks TF. It's great to know that you got your life back after 8 1/2 years! That gives us all some hope :-) I will read the article you cited above. Is he a reputable doctor when it comes to chronic Lyme disease?
Posts: 43 | From ny | Registered: Nov 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
jamielett, Dr. Burrascano is the #1 lyme disease pioneer. He is the most well-known lyme doctor in the world. Before he retired a few years ago, they came to him from every country in the world.
He was the most successful lyme doctor on the planet. And, he shared his lyme treatment knowledge with every doctor who would listen. He passed out his Guidelines for free. And, now they are on the International Lyme and Associated Diseases Society website. ILADS is the organization that believes in chronic lyme.
You will also see his Guidelines at the very top of the "Medical Questions" forum here on LymeNet. So, they are the standard reference for lyme--chronic, recent, etc.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesia is suspected, and require adherence to rules such as low carb diet, no alcohol, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
I had undiagnosed lyme disease (and babesiosis and bartonella) for at least 10 years. I treated for a little over 3 years (2 years with an inadequate lyme doctor).
Then, I switched to a doctor who followed the Burrascano Guidelines, and I got well in 13 months. I have been rid of lyme disease for 8 1/2 years.
I have at least 5 friends who went to doctors who follow the Burrascano Guidelines, and they also got rid of their lyme disease and coinfections. The doc is the key!
I worked throughout my illness and treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Wow...I didn't know that. Thanks for the info. That was very helpful! I've also been undiagnosed for approx 10 years. It's been a crazy journey.
So if I'm seeing a doctor who is only treating with 1 antibiotic, in your opinion, does that NOT really treat the disease?
Also, I heard that the Lyme "bugs" go through a cycle monthly where one week of the month, they reproduce. Does that mean that only one week of the monthly antibiotics are actually killing the bugs?
Posts: 43 | From ny | Registered: Nov 2013
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posted
ask for doryx. slow release doxy that is absorbed in intestines and not in belly so that it doesn't make you sick. works great.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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posted
My doctor just told me the same thing about doryx...was shocked though at how expensive it is! Jumped significantly in cost from doxycycline. Thanks for the tip.
Posts: 43 | From ny | Registered: Nov 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It is generally accepted that lyme can evade any ONE antibiotic by changing into a form that that particular antibiotic cannot kill. So, to kill it, the doctor must give the patient 2 dissimilar antibiotics.
See page 12 of Burracano, "Combination Therapy." This is where it is discussed. See a small part of the discussion below:
"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.
2. INTRACELLULAR NICHE- Another reason, discussed below, is the fact that Bb can penetrate and remain viable within cells and evade the effects of extracellular agents. Typical combinations include an extracellular antibiotic, plus an intracellular agent such as an erythromycin derivative or metronidazole. Note that some experts discourage the co-administration of bactericidal plus bacteriostatic agents, thus the recommendation to avoid a cell wall drug combined with a tetracycline.
3. L-FORMS (SPHEROPLAST)- It has been recognized that B. burgdorferi can exist in at least two, and possibly three different morphologic forms: spirochete, spheroplast (or l-form), and the recently discovered cystic form."
4. CYSTIC FORM- When present in a hostile environment, such as . . . serum [blood] with certain antibiotics added, Bb can change from the spiral form (“spirochete”) into a cyst form. This cyst seems to be able to remain dormant, but when placed into an environment more favorable to its growth, Bb can revert into the spirochete form.
The antibiotics commonly used for Lyme do not kill the cystic form of Bb. However, there is laboratory evidence that metronidazole and tinidazole will disrupt it. Therefore, the chronically infected patient who has resistant disease may need to have metronidazole (or tinidazole) added to the regimen." (pages 12-13)
Any good lyme doctor knows this and follows it. This is why it PAYS to be an educated lyme patient.
STUDY Burrascano.
My lousy second lyme doctor had me on only one antibiotic for lyme disease. Did this for 2 years until I wised up. Then, I went to a Burrascano type doctor and treated lyme for 2 months and was done!
That's why I still stick around LymeNet--to point people to the good doctors so they don't have to spend YEARS treating this disease!
Regarding the lyme monthly cycle, Burrascano discusses this on various pages. They are not sure about many things regarding the lyme growth cycle. However, since all the lyme bacteria in your body are likely not all on the SAME 4-week growth cycle, you are likely killing lyme daily. We know that lyme flares every 4 weeks. But, the reason for this is not totally understood.
Nobody is spending money studying this disease, unfortunately.
To study the lyme cycle or any other subject, uses the "Find" function when you have the Guidelines on your screen. Hit Control+f and type in the word "cycle" and you can read everything Burrasacano says on the subject.
To get rid of lyme, you have to stay on meds continuously. You can't just treat it during the monthly flares. No lyme doctor that I know of does that. Burrascano requires daily doses of meds. See page 18 and following for the various antibiotics that will work against lyme and the daily dosages that must be used to kill it.
Generally, the dosages are higher than a regular doctor would prescribe. Without high doses, you will never get rid of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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steve1906
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-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Lymedin2010
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posted
I had extreme fatigue right before any treatment. The ABX that brought me back to life & gave me my energy back was IV Rocephin. Before the ABX, I could only lay down & whisper at times. All the energy had been sucked right out of me.
After getting to 90-95% better within 3 weeks, then slowly, week by week, I got more & more Lyme symptoms and growing fatigue. My LLMD at the time said you have to get worst before getting better.
Each week I was getting more & more symptoms & I felt like something was clogging my head and neck. Almost as if I was going to have a stroke. Doxy was the only ABX, after some trials with ABX, that got me back on track & reversed my newly developed symptoms and dramatically helped with fatigue.
With the oncoming months, even with Doxy, I was getting more & more and newer symptoms. This would happen especially kick into high gear when stopping doxy.
Bicillin shots were the only other ABX that helped with fatigue. Every one is different, but the ABX that helped me with my fatigue was IV Rocephin, Doxy, & Billin LA shots.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Working and treating Lyme at the same time is hard. When I first started treatment, I went and took naps in my car during smoking and lunch breaks.
If it's any kind of option, talk to your workplace. When I was at a larger corporate gig, I filed for FMLA to get some lenience on lateness, and also to cut my work schedule back a bit (I worked 4 days a week, but was able to keep the position).
Now, I work for a much smaller agency where they don't have such policies, so I just talked to my boss here about it. He said if I need an extra hour in the morning, it wasn't a problem. If I have to take a day off, as long as things are getting done, they're pretty flexible here. I'm also doing four days a week here - having a day off in the middle of the week is EXTREMELY helpful.
I've never not worked, even doing IV treatment (which I actually just started up again). It's not ideal, but it's doable.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
Ladycakes...that's awesome that your job is so flexible with you. I didn't know that you could take FMLA for Lyme.
Posts: 43 | From ny | Registered: Nov 2013
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posted
TF...thanks for sicking around and educating the newbies like me! I will study Burascano. I've heard that multiple antibiotics needs to be used at once. Right now my doctor just has me on doxy 150mg twice a day. And with that, I am def herxing and feeling so crummy.
I will search the lyme cycle. Seems interesting. I'm trying to find a LLMD in my area...
Posts: 43 | From ny | Registered: Nov 2013
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