posted
Thanks for all the comments on my last post about the burning pain in my skin and my throbbing head.
It's been nearly a week since I stopped my abx per Dr. C's nurse's orders - she said my burning skin pain and throbbing head were herx sx, even though they were new sx for me. They said stay off the meds 1-5 days and it would all get better. It hasn't.
I stopped the meds, the throbbing in my head has eased PART of the day, but most of the day it's just as bad as before. The burning pain has not gotten ANY better. I'm nearly in tears right now it's so friggin' bad. I've felt a lot of pain (as we all have), but this is some of the WORST. I can't get away from it, not with *any* med, not even Darvocet.
How long do I stay off meds hoping it will go away? Do I need to be looking at something other than Lyme? Do I need to see a Neuro again?
Posts: 91 | From East TN | Registered: Mar 2007
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posted
I'm so sorry to hear this!!! What meds are you on?? Is there anything else that could be causing it??
I would call his office back and ask what to do.
There are plenty of others who have these symptoms, but that doesn't help you right now. When we herx, new symptoms DO show up....and will eventually go away.
Let's hope and pray that is the case for you as well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I'm only on Armour, Iron and D-3 right now - I stopped everything else in case something else was causing all this.
I think I'll call them again tomorrow. I'm just completely miserable and I can barely even think it's so distracting, and it's hard enough to think in the first place! I feel like I'm maybe 10% better than I was five months ago when I started treatment, and I'm just so discouraged, especially with this new, agonizing sx that I can't get any relief from.
I am so, so tired of being sick.
Posts: 91 | From East TN | Registered: Mar 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Burning pain can be caused by lyme. It can also be caused by EBV. Get tested for EBV.
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
My burning pain was help by treating Bart with various abx including, Septra & Biaxin, Zith & Rifampin.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Like Foggy my burning pain was Bart- and for me, Babs, too-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I had burning pain so bad, my skin turned red from the heat. It started in my knees, that is where the lyme settled in. IT spread to my legs, and back. then my arms, hands, and head. Then, I felt water in my knees, water I tell you. then I felt the water sensation in other parts of my body. this lasted over 4 months. Straight. My eyelids burned, my face burned. I finally began treatment one month ago, now I get burning, not so severe, but it is a herx. I think it is bart, I am on levaquin and bicillin. It is lyme, don't waste your time with a neuro, mine did not even order a blood test on me. they suck. It is lyme, keep on the abx, don't stop, it will get better. I had a good day on Friday, where my pain level was around a 5!!!!! I walked around the block fast paced!!!!then a herx came. This is going to be long, but worth it, Don't stop the meds. Jenin
Posts: 455 | From Maryland | Registered: Jul 2007
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tailz
Unregistered
posted
quote:Do I need to be looking at something other than Lyme?
Yeah. Most people on here don't believe me, but if you're in enough pain, I guess, you'll consider it. Don't blame everything on a herx either. If something puts you in pain, there's a reason. And if it continues, be it a food or a drug, stop it.
But I think this is why we have Lyme. Cell towers and wireless put our immune systems over the edge, when we were already over the edge from ordinary electrical current. You may be one of the few humans like me who can actually 'detect' the current through pain sensations and burning:
The Body Electric by Robert O. Becker, M.D. - (pages 276-278):
Subliminal Stress
After Howard Friedman, Charlie Bachman, and I had found evidence that "abnormal natural" fields from solar magnetic storms were effecting the human mind as reflected in psychiatric hospital admissions, we decided the time had come for direct experiments with people.
We exposed volunteers to magnetic fields placed so the lines of force passed through the brain from ear to ear, cutting across the brainstem-frontal current.
The fields were 5 to 11 gauss, not much compared with the 3,000 gauss needed to put a salamander to sleep, but ten to twenty times earth's background and well above the level of most magnetic storms.
We measured their influence on a standard test of reaction time - having subjects press a button as fast as possible in response to a red light.
Steady fields produced no effect, but when we modulated the field with a slow pulse of a cycle every 5 seconds (one of the delta wave frequencies we'd observed in salamander brains during a change from one level of consciousness to another), people's reactions slowed down.
We found no changes in the EEG or the front-to-back voltage from fields up to 100 gauss, but these indicators reflect major alterations in awareness, so we didn't expect them to shift.
We were excited, eagerly planning experiments that would tell us more, when we came upon a frightening Russian report.
Yuri Kholodov had administered steady magnetic fields of 100 and 200 gauss to rabbits and found areas of cell death in their brains during autopsy.
Although his fields were ten times as strong as ours, we stopped all human experiments immediately.
Friedman decided to duplicate Kholodov's experiment with a more detailed analysis of the brain tissue. He made the slides and sent them to an expert on rabbit brain diseases, but coded them so no one knew which were which until later.
The report showed that all the animals had been infected with a brain parasite that was peculiar to rabbits and common throughout the world. However, in half the animals the protozoa had been under control by the immune system, whereas the other half they'd routed the defenders and destroyed parts of their brain.
The expert suggested that we must have done something to undermine resistance of the rabbits in the experimental group.
The code confirmed that most of the brain damage had occurred in animals subjected to the magnetic fields. Later, Friedman did biochemical tests on another series of rabbits and found that the fields were causing a generalized stress reactions marked by large amounts of cortisone in the bloodstream.
This is the response called forth by a prolonged stress, like a disease, that isn't an immediate threat to life, as opposed to the fight-or-flight response generated by adrenaline.
Soon thereafter, Friedman measured cortisone levels in monkeys exposed to 200-gauss magnetic fields for four hours a day. They showed the stress response for six days, but it then subsided, suggesting adaptation to the field. Such seeming tolerance of continued stress is illusory, however.
In his pioneering lifework on stress, Dr. Hans Selye has clearly drawn the invariable pattern:
Initially, the stress activates the hormonal and/or immune systems to a higher-than-normal level, enabling the animal to escape danger or combat disease. If the stress continues, hormone levels and immune activity gradually decline to normal.
If you stop your experiment at this point, you're apparently justified in saying, "The animal has adapted; the stress is doing it no harm."
Nevertheless, if the stressful condition persists, hormone and immune levels decline further, well below normal.
In medical terms, stress decompensation has set in, and the animal is now more susceptible to other stressors, including malignant growth and infectious disease.
In the mid-1970's, two Russian groups found stress hormones released in rats exposed to microwaves, even if they were irradiated only briefly by minute amounts of energy.
Other Eastern European work found the same reaction to 50-hertz electric fields. Several Russian and Polish groups have since established that after prolonged exposure the activation of the stress system changes to a depression of it in the familiar pattern, indicating exhaustion of the adrenal cortex.
There has even been one report of hemorrhage and cell damage in the adrenal cortex from a month's exposure to a 50-hertz, 130-gauss magnetic field.
Soviet biophysicist N. A. Udintsev has systematically studied the effects of one ELF magnetic field (200 gauss at 50hz) on the endocrine system.
In addition to the "slow" stress response we've been discussing, he found activation of the "fast" fight-or-flight hormones centering on adrenaline from the adrenal medulla.
This response was triggered in rats by just one day in Udinstev's field, and hormone levels didn't return to normal for one or two weeks. Udinstev also documented an insulin insufficiency and rise in blood sugar from the same field.
One aspect of the syndrome was very puzzling. When undergoing these hormonal changes, an animal would normally be aware that its body was under attack, yet, as far as we could tell, the rabbits were not. They showed no outward signs of fear, agitation, or illness.
Most humans certainly wouldn't be able to detect a 100-gauss magnetic field, at least not consciously. Only several years after Friedman's work did anyone find out how this was happening.
In 1976 a group under J. J. Noval at the Naval Aerospace Medical Research Laboratory at Pensacola, Florida, found the slow stress response in rats from very weak electric fields, as low as five thousandths of a volt per centimeter.
They discovered that when such fields vibrated in the ELF range, they increased levels of the neurotransmitter acetylcholine in the brainstem, apparently in a way that activated a distress signal subliminally, without the animal's becoming aware of it.
They discovered that when such fields vibrated in the ELF range, they increased levels of the neurotransmitter acetylcholine in the brainstem, apparently in a way that activated a distress signal subliminally, without the animal's becoming aware of it.
The scariest part was that the fields Noval used were well within the background levels of a typical office, with its overhead lighting, typewriters, computers, and other equipment.
Workers in such an environment are exposed to electric fields between a hundredth and a tenth of a volt per centimeter and magnetic fields between a hundredth and a tenth of a gauss.
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posted
For me the herx's were more or less periodic. (every 6 weeks or so, while on the same abx). I covered up the symptoms with drugs to some extent, but tried to address them nutritionally, too. "Nutrijoint" helped some of the joint stuff, and b vits helped. Gingko was excellent as a general tonic and seemed to reduce certain aches. (headaches, for instance).
I tried to avoid backing off on the abx, since my desire to kill of the lyme was so strong. I hope you feel better soon!
DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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quote:Do I need to be looking at something other than Lyme?
Yeah. Most people on here don't believe me, but if you're in enough pain, I guess, you'll consider it. Don't blame everything on a herx either. If something puts you in pain, there's a reason. And if it continues, be it a food or a drug, stop it.
Tailz....You may not realize it, but what you just said could harm Sarah long term IF she were to listen to YOU and not her doctor.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Did you ask you LLMD about Lyrica? Lyrica and Lamictal are very helpful for me. I'm being treated for Bb, Babs, Bart and others with orals after many months on IV's. I'm not one to pile on drugs, and it has been extremely diffucult to accept up to this point but the results of all of my treatment have been lifesaving. The Lyrica & Lamictal, recommended by my LLMD, have allowed me to rest/sleep and heal. (also exposes the layers of pain underneath the buring and stabbing that are more functional and important in dx) I hope you find some answers soon, Robin
Posts: 47 | From morgantown, wv | Registered: Feb 2007
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posted
Burning skin is neuropathy. Mine felt like someone had stripped off the outer layer, sprinkled in salt and set it on fire. I think my life & sanity was saved by a little $1 tub of blue menthol gel. I've seen this stuff in dollar stores and variety stores. I bought it out of desperation and plastered it on (my burning was in the front of my calves). Eventually I was seen by a neuro and put on Neurontin, thank heavens, and also did longterm Lyme treatment. Way, way, way better but I take it day by day. This was the worst LD symptom I had -- eventually I had to quit work and go on SSD. Sadly my 24-yr-old nephew, also longterm Lyme, also has burning skin problems and this is miserable.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yup- we had a local member with borrible burning neuropathies who also did great on neurontin, said it saved her life-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I wish I knew what to tell you.. this is the most horrible symptom, I am having it very bad right now too (again) and have no idea what triggered it this time...
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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savebabe
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Member # 9847
posted
This is a horrible symptom for me as well. I have found that treating babs, and bart has helped.
Recently I added Dr. Zhang's art to my treatment and the burning has decreased.
Feel better.
Posts: 1603 | From ny | Registered: Aug 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Also, are you sweating with your burning at night?
Posts: 1603 | From ny | Registered: Aug 2006
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