posted
I had a tick bite in Florida last month and began a Doxycycline protocol within eight days. At the time I had no symptoms other than EM rash.
Concerned about whether my treatment was enough, I sought out a Lyme specialist (ND) who doubled my dose of Doxy and added some herbal stuff.
Right now I'm having headaches and, most alarmingly, burning sensations in nerves all over my body. I've consulted with both the NDs I've worked with; one thinks it's a reaction to the drug and the other (the specialist) says it's a Herx reaction. But how can I have a Herx reaction when I never had symptoms in the first place?
I'm now faced with the harrowing choice between 1) staying on the Doxy and risking possible nerve damage and 2) stopping the Doxy after only three weeks and risking full-blown Lyme. Maybe I should take votes from my readers, since I can't decide.
I thought treating "early Lyme" would be relatively straightforward. Boy was I wrong.
Posts: 13 | From Vermont | Registered: Apr 2017
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm so sorry you are finding out that there is never anything simple about lyme at any stage, at any point in time.
Q: " But how can I have a Herx reaction when I never had symptoms in the first place?"
One need not have symptoms of lyme to have lyme. Sometimes the antibiotic's reaction is a sign that lyme is in the picture.
The EM Rash was also a clear sign of lyme - your sole symptom was the EM rash. That's often common to not have other symptoms right away. So, when the spirochetes are faced with the Rx, they don't like it and revolt. A "herx" is better described in the Liver support thread below.
I don't think ANY treatment should be torture. The nerve stuff you describe sounds like a clear signal to stop . . . yet cover bases within a day with something else.
Of course, it's now the dinner hour where you live so you'll likely have to wait until tomorrow to talk again to either ND.
Be sure to get some alternate plan no board by the end of tomorrow as it's Friday.
This can work out, just back up, slow down, sit it out for a minute.
it makes sense to stop it for now - a day or two at the least. There are other ways to approach lyme, many other ways.
Why I vote to stop it: it could be an actual individualized reaction to the drug.
If the ND with whom you work is ILADS educated, they will know other ways, included some DIRECT herbs that might be best to move to after a day or two off doxycycline.
Doxy, alone, can't treat lyme anyway so this won't slow you down too much and many patients have to stop and change course frequently.
I would get some Allicin and switch to that as a waiting period cover so to speak - after a day off for your body to rest a bit. But your ND should know more about this.
This just might not be the right Rx for you.
Your liver support may need to be adjusted. Also consider:
Doxycycline cautions:
1. Even autumn or winter sun, even early morning or late afternoon sun can burn. "Doxy burns" can be very rough.
avoid sunlight on your skin (even "bounced" sun - or through a window) even for weeks after stopping doxycycline if you go onto a different antibiotic.
2. Food with doxy is vital to protect stomach. But no dairy. Do not take with any multi minerals, either. The food minerals will lessen the medicine level and make it not as effective.
A substantial meal, in the middle with some food before and after the doxycycline really matters.
Protect stomach but do not take a PPI - proton pump inhibitor (they have some negative effects). take doxy with a substantial snack or meal - in the middle so you've got some food before and after
Avoiding gluten can help with the stomach, too.
3. keep torso as close to upright as possible for at least 30 minutes after doxycycline taken so as to help protect esophagus from the irritation it can cause if lying down.
Depending upon the angle of the particular chair, the most upright position of a recliner MIGHT be okay if you must rest your head or put your feet up, just don't slink down.
PROTECT EARS / HEARING - when taking certain Rx, the ears need protection. Ear plugs with a hair dryer . . . decibel rated muffs with a blender, vacuum, lawn equipment, etc.
Careful around loud music and best to avoid in the ear pods. There is a link in the Liver Support thread that explains why.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
EAR / HEARING PROTECTION note of vital importance, too.
PROBIOTICS also vital, take a couple hours away from antibiotic (both clock directions) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Other methods that you can consider when one method does not work out: When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
For those considering complementary support methods / or other avenues entirely:
Herbal Safety considerations & reference books; etc.
BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'll add my two cents- so like you, I was having terrible headaches(knocked me off my feet) etc and was not knowledgeable at the time, told my doc I could not work like that, he pulled the doxy- I'm sure now it was a herx, put me on Ceftin and full blown chronic lyme resulted (possibly too simplistic as I have had coinfections however). Interestingly as my chronic lyme progressed I had a ton of nerve pain and it always flared with successful treatment- a herx. I know neuropathy can be scary. I would talk to an LLMD or an llnd before you do anything. Nerves will generally repair is my understanding but I'm not a doctor. I do wish I could change that one decision -hindsight is always 2020. Just an FYI.
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
Thanks for the responses. Hard to know what to think. Apparently Herx reactions can happen with early Lyme, but I was on antibiotics for nearly two weeks before things began getting uncomfortable--then when I switched doctors and doubled the Doxy, it got really uncomfortable. Maybe I'll go back to my original dose for a couple of days, but I'm going to try some detox to see if that helps.
Posts: 13 | From Vermont | Registered: Apr 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It can definitely be a herx. Especially since it happened only after you increased the doxy dose.
A low dose doesn't kill any lyme. It takes a high dose for the med to kill. That is why Burrascano says a low dose is bacteriostatic and a high dose is bactericidal ("cidal" = kill; 'static' = keeps the lyme germ from multiplying)
So, you just started killing lyme when you went to the high dose.
You definitely need to detox in any and all possible ways. Nobody gets better if they don't detox. And, some folks genetically have trouble detoxing. If that is you, then you have to work even harder at it.
Some detox methods to try:
drink lots and lots of water with fresh lemons squeezed into it. Make this your only drink all day until your symptoms subside.
Take Alka Seltzer Gold 4 times per day with lemon or lime squeezed into it.
Take glutathione in any form available to you.
Take Epsom salts baths in warm water.
Sweat to detox through your skin.
etc, etc.
If you improve, then go back to the higher (killing) dose of doxy to knock this thing out. I agree you need to add a persister/cyst buster drug such as Tindamax (tinidazole) or Flagyl (metronidazole) but I would wait until your nerve symptoms totally subside to add this.
Read and study the Burrascano Lyme Treatment Guidelines. Observe all the rules for patients such as: no alcohol, no smoking, absolutely no steroids or immune suppressing drugs (predinisone, etc.) unless your life is in danger, etc. See all the rules on p. 27.
See this quote from Burrascano:
"ANTIBIOTICS There are four types of antibiotics in general use for Bb treatment. The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate. For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration. Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid is more effective than 100 mg qid. Likewise, this is why IV doses of 400 mg once a day is more effective than any oral regimen." (p. 14)
With lyme, there is NO SUBSTITUTE for an educated patient. And, the doc is the key to getting rid of this horrendous disease. Can't emphasize that enough.
I only recommend doctors who follow the Burrascano Guidelines. That is how I got well after having lyme for at least 10 years undiagnosed.
Then, I sent 5 of my friends to Burrascano type doctors and they all got rid of their lyme also.
I have been cured for 12 years now. I just stick around LymeNet to help folks like you.
A few years after I completed my lyme (and babesiosis and bartonella) treatment, I got bitten again and got a bulls eye. I went back to my lyme doc who treated me with 3 antibiotics for 30 days. These 3 covered lyme, babesiosis, and bartonella. I got no symptoms at all, so I was done after 30 days.
I did, however, have a very mild herx on day 3. The symptom of the herx was that I got played out very easily all day long. I would have to stop what I was doing and go lay down for a while.
After about 30 minutes, I would feel fine again and would go out and be active, and the same thing would happen again. It happened all day long that day. So, that was my herx.
I started meds within a week of the bulls eye rash.
Since you had such a reaction to the doxy, look back and see if you can see any symptoms of lyme in your past. It may be that you did not get a rash with your first tick bite and your body was fighting off the lyme for a while.
Then, when you got the second bite, that increased the germ load on your body and your immune system was no longer able to keep down the lyme. Hence, the major herx when full-dose doxy was given to you.
This is common, by the way.
Regardless, now that you have this terrible lyme symptom, you need to treat until you are symptom free, then treat 2 more months after that.
I am guessing that you did not get lyme 8 days before you started the doxy. This is based on your current reaction.
Headaches and burning sensations in your nerves are 2 extremely common lyme symptoms. When you herx, you get exaggerated lyme symptoms. So, I do believe you are herxing now.
If you have had lyme for a while, you will then also have to treat the coinfections--meaning babesiosis and bartonella at a minimum.
"The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections." (p. 4)
Regarding herxheimer reactions: "Observation suggest that the more severe this reaction, the higher the germ load, and the more ill the patient." (p. 17)
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF-- Thanks for so much good info. For the record, I never saw a tick (and no way I'd miss one embedded in my bicep where the rash was). What happened was I woke up in a hotel room covered with red welts that I took for bed bugs. All of them healed in a week, but then the bulls-eye appeared. Very strange.
Anyway, I started detoxing yesterday: skin brushing, Epson baths, milk thistle. My original ND mentioned the glutathione as well (though my LL ND did not), so maybe I'll get some. I'd like to get on my bike but haven't really felt up to exercise, so we'll see.
I'm on Nystatin for anti-fungal but no other abx except Doxy. Instead my LL ND gave me Cat's Claw and Serra Peptase for cysts and biofilm. The plan is one month on Doxy (in addition to the 2 weeks I already did) and another month on the herbs, but this herx episode puts the goal line further away.
As far as I know, my doc trained with Dr.H but our plan sounds similar to Burrascano's.
This morning my face feels flushed and my neck is beginning to tighten up. Every time I dose it gets worse. Instinct says its probably the drug (and my original ND suggests same) but that conflicts with everything else I'm hearing. If it gets much worse I won't be able to concentrate at work, at a time when I'm facing a bottleneck of work tasks.
It may be that I've had Lyme for awhile--I know another ND in Connecticut whose chronic Lyme only flared up after intense exercise long after the infection--but I can't think of any previous symptoms. I'll bring it up with my LL ND. If it is chronic, there's no way I'm doing abx long-term. The ND in Connecticut cured his Lyme solely through diet. You can find that article on his website DrRons.com.
Anyway, what I thought was going to be a tap-in putt is turning into a nightmare. Seems I'm trapped in a wilderness with a compass that doesn't work. No options except take it day by day.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Fuji, I never saw a tick either time I was bitten.
Tell me, if the tick got on you while you were sleeping, and if it got off of your bicep while you were still sleeping, would you see it? In other words, if the entire process happened while you were sleeping, you could not see the tick on your bicep.
I KNOW I was awake when the tick got on my arm the second time I got lyme. I pulled out a few weeds and laid them across my arm. Then, I carried them to the woods and threw them away.
All told, the weeds were on my arm for about 2 minutes. I got the bulls eye rash on the arm right where the weeds lay.
Guess what? I NEVER saw a tick there on my arm.
You may not know it but the nymph stage of a tick is virtually invisible. A tick can be as small as the period at the end of a sentence.
So, there is no guarantee that if there is a tick on your arm, you will see it. No guarantee at all.
About 2 days after the weed incident, I got a raised red bump on my arm, and it itched. I thought I had a hive or welt for some reason. Then, the next day, that disappeared and the bulls eye rash appeared.
Believe me, ticks can be nearly invisible.
Also, the best detox is to drink the lemon water all day long and take the Alka seltzer gold 4 times per day.
Water flushes out the toxins and lemons are a natural cleanser of the body. My doc wanted me to eat 4 lemons per day, but I only managed 2 per day.
And the Alka Seltzer makes people feel well quickly, per Dr. H. (No lyme doc names allowed on LymeNet, so we just use initial.)
So, I hope you are doing these 2 and the glutathione.
Mark on your calendar when the symptoms started. Hopefully, you can continue the doxy and get through this. Generally, I would expect the herx to last only a week, but everyone is different.
I don't have a problem detoxing, so that is how long my first herx lasted. Others can herx for longer.
Here are some detox tips from Dr. H:
Herxheimer reaction (from 2010 Lyme Conference):
Take-home message: DETOXIFY YOUR LYME PATIENTS!
It does NOT matter what antibiotic you give people, they will NOT get better without detoxification
For Herxheimer reactions: 2 Alka-Selzer Gold (no aluminum) in 8 ounces of water with lemon or lime followed by 6-8 capsules of glutathione or 1500 mg of oral liposomal glutathione.
70% will feel better in hours
On the topic of water: Dilution is the solution to pollution. This suggests that in order to help our bodies detoxify, we must drink more water
AND:
From Dr. H. patient, Sept, 2013 (Dr. H's protocol for detoxing during a herx/flare):
Flare protocol in a nutshell:
Try 1st: --Burbur, 10 drops every 10 minutes for 2-3 hours or 10 days until flare resolves --Parsley (same as burbur) --Lemon/lime in H2O sipped through straw 4x/day --Alkaseltzer gold OTC or sodium bicarb 4x/day
If above doesn't help, add:
Oral glutathione (Essential Pro) 6-8 caps at once, repeat as needed, up to 3x/day
If no help w/above steps, try: --Pekana drainage 15 drops of each bottle 3x/day --Sydetox 15 drops 2x/day --LDN, as prescribed at bedtime
Finally, "burning nerve sensations all over my body" is NOT a doxy side effect based on what I know and doing a Goggle search for doxy side effects.
However, it is a big-time lyme symptom. I had the feeling of being stabbed with thousands of pins all over my body.
Read the symptom list from Burrascano, pages 9-10. See this symptom listed on page 10:
"Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity"
Do your own search for doxy side effects. Then, I think you will agree with your better doctor that you are having a herx.
For example, can you find any website that says that doxy can cause nerve damage? or even the symptom you are describing?
Try to continue treating. However, if it becomes really unbearable, you can stop for a day or 2. Take sick time off from work if necessary.
The standard for "unbearable" does NOT mean that it is interfering with your ability to work. People should expect to take sick days from work when they are herxing. That is the norm.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you might want to connect with your doctor today, be mindful that they might close early on Friday afternoons either sometimes or just to wrap up paperwork, etc.
There are so many questions here on Friday nights that are best attended by the patients' actual doctors so
while TF has given you excellent information that you can trust (her posts are the top notch of trust worthy and accurate)
don't wait until the last hour to contact either of your NDs if you intend to talk with them before next week.
Take care, take good care of yourself. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks to all of you--top-notch information for sure. I'm calling my ND at lunch today. I can soldier through my current discomfort; it's the psychological torture of not knowing whether it's the drug or the herx that is really gnawing at me. It just seems crazy that getting treated almost immediately after a bite would produce this kind of reaction. (Even Buhner's book HEALING LYME says only 15% of patients get a herx, thus muddying the waters more.)
Posts: 13 | From Vermont | Registered: Apr 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Perhaps you misread Buhner. Perhaps the 15% statistic for herxing means of those on the Buhner protocol only 15% herx.
You are on doxy (high-dose, I presume). I doubt that is the Buhner protocol.
On the Burrascano protocol, the patient is expected to herx.
Remember, I herxed mildly the second time I had lyme and I started treatment for it within a week.
I am glad to hear that your herx symptoms are only discomfort. It seemed from your earlier posts that you were being physically tortured.
The waters are not muddy. Maybe it is you clinging to certain (incorrect) beliefs that is muddying your waters. Hopefully, you are going to get rid of these symptoms soon and treat for perhaps 6 weeks to 3 months and be fine.
For peace of mind, do a thorough search through Google on side effects of doxycycline. Then, you should see clearly what is going on.
Here is the Burrascano dosage for doxy:
"Doxycycline- Adults: 200 mg bid with food; doses of up to 600 mg daily are often needed, as doxycycline is only effective at high blood levels. Not for children or in pregnancy.
If levels are too low at tolerated doses, give parenterally or change to another drug." (p. 18)
So, this says to take 200 mg doxy twice per day for a total of 400 mg per day.
I hope you are taking this much.
Here is where Burrascano says how long to treat if the lyme is caught early:
"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." (p. 19)
So, if you had no symptoms of lyme before this bulls eye rash, and no symptoms after the rash, this is the length of treatment recommended.
Since you now have lyme symptoms (since starting doxy), you likely do not fit into this category. Read the following pages of Burrascano to see what he recommends as length of treatment for the next category up--early disseminated disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF-- Doxy, yes, I'm on 2x200mg daily and yes, I've scoured the web for neural side-effects. So far very little evidence found, I admit. Sure my waters are muddied by my beliefs; but I'm also just very ambivalent about antibiotics, which I've taken only a few times in my life. The last time was seven years ago for a variety of intestinal parasites, and the course seemed to do more damage than help.
Symptoms: Correct, nothing before (besides a bum hamstring I've had for 15 years) and nothing by the time I started treatment. It's only since treatment began that this has gone sideways. My LL ND and I didn't even discuss detoxing in our brief appointment; I don't think she expected me to go through a herx with early localized Lyme and no symptoms.
Thanks for your thorough posts. You obviously know this road very well.
Posts: 13 | From Vermont | Registered: Apr 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
OK. Well, it sounds like your herx symptoms aren't that bad. But, any time you take antibiotics for lyme, you really really should detoxify.
It's just a good policy. I hope that once you start these detox tools (start ASAP), you are going to feel much, much better.
The lyme disease bacteria produce neurotoxins (meaning literally "nerve" "poisons"), so that is why killing them is going to cause nerve symptoms and headache.
See page 13, Borrelia Neurotoxins, for more info. Here is the first sentence: "Two groups have reported evidence that Borrelia, like several other bacteria, produce neurotoxins."
Lyme symptoms can be very strange, scary, different from any other disease, etc. So, perhaps once you start detoxing and the symptoms start to fade, you will feel better mentally about what is happening.
If you are able to tolerate them and work, then I would say your herx symptoms would be classified as "mild." So, it is normal to experience what you are experiencing.
Posts: 9931 | From Maryland | Registered: Dec 2007
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