My lyme has been a tricky little bugger. I got my first "positive" test result 6 years ago, but the western blot was "negative" so we went with negative--this was before I knew anything about all this Lyme controversy stuff. I've had off and on joint issues, but nothing debilitating or long lasting, then 8 months ago the neuro symptoms slammed me and I've been down and out ever since!!! New Lyme specific protein tests show me as positive--and I agreed to treatment.
Well, I've been on Azithromyacin, amoxicillin and probenecid now for three weeks (all three only two weeks). All together it's about 1800 mg of abx/day (WOWZERS) and even I was skeptical at first. But now, my jaw is killing me, and my knee keeps having these super sharp pains when I stand up--I keep hearing the doctor telling me how the first few weeks of treatment are kind of like hitting a bees nest with a stick.
Just to be sure that the jaw pain is Lyme related and not something new (my luck) I've got a dentist appt on Monday, but all the "classic" signs are there. THe pain is mainly in front of my left ear, and is generally there when I bite or chew. It tends to get less as I continue to chew, but aches after eating. At the same time, it sort of feels like it "could" be a tooth, though my teeth and gums seem fine.
I don't know--I've been fighting off all the docs who look at me like I'm a hypochondriac, but now days I'm starting to feel a bit like one. Every ache and pain--things I used to just ignore and move on--cause me to pause and wonder what's up with that. And this jaw thing is really bothering me. Anybody else have this sort of pain with their lyme? Seems like, aside from the knee joint, the TMJ is one of the most commonly hit joints in the body when it comes to Lyme. It's been bugging me off and on for the past 8 months, and I just sort of brushed it off and it would stop hurting after awhile and I'd forget about it. Now it's being persistant and I kind of wish I had brought up the jaw thing to someone months ago. Geez--this thing plays around with you doesn't it?
Lyme bugs like to hide where the immune system can't find them and where blood flow is low, and cartilage (like joints) are high on that list.
Therefore knees and TMJ. So yes, your jaw pain may well be Lyme-related, but getting it checked out is the right thing to do.
You are NOT a hypochondriac, or you would have been wailing and bawling about all sorts of things for a long, long time. Treatment stirs up the bugs, which increases the symptoms, producing a 'Herxheimer reaction' aka Herx, meaning a temporary worsening of symptoms.
You know how, in the week between Xmas and New Years, the streets looked really ragged with piles of boxes and half dead Xmas trees lined up waiting for the garbage truck? Yeah, it's like dead Lyme bacteria just waiting for your system (aka trash trucks) to back up and haul the refuse away.
But getting your teeth checked is good. Sometimes even people with Lyme get other ailments, she says sarcastically. The level of meds you are taking is hammering the little beasties, and your body is the battlefield.
Hang on! ... and if the pain or other side effects gets to be too much, tell you doc. Sometimes the docs underestimate how bad the Herx will be and need to adjust to a lower/slower approach, but don't freelance on that, talk to the doc.
I used to visualize the antibiotics as reinforcements arriving at the beleaguered and besieged castle that was my ailing body, and together the meds and my immune system would rally and smash the critters. Grim satisfaction, like in Star Wars. Whatever gets you through the Herx.
I thought I was prepared for herxing, but I was still a bit surprised by the pain involved and how long it's taking. In my first few weeks, I had a similar reaction as your jaw, but in my ribs instead. I have neurologic Lyme and have not had any muscle or joint pain like most Lymies. However, I have had plenty of abdominal and rib pain, enough to put me in the hospital. It seems the connective tissue in my ribs were quite loaded up with the little buggers.
I had more continuous rib pain every time I added a new antibiotic, especially when I took the first Bicillin shot. Yow! I was hobbling around and laying hot packs across my ribs multiple times a day. I even skeptically bought an anti-inflammatory cream that surprised me and actually helped. (Even if it was a placebo effect, I was happy for it!) It's called BST cream by Dr. Thoring. It doesn't work for everyone, but it might be worth a try.
Four months into treatment, I would say my ribs feel 75% better. I still have some soreness and sensitivity, but the outright pain stopped about a month ago.
I also started taking Chlorella, as it has toxin removing capabilities. My rib pain was already subsiding when I started it, so I'm not sure how much it helped my ribs, but I definitely noticed a reduction in tinnitus with the chlorella. You have to get the "broken cell wall" type in order for your body to use it and you take it after a meal so it doesn't upset your stomach.
I have had jaw pain exactly as you describe, and in my case it is definitely Lyme causing it. Mine also flared up dramatically when I started antibiotic treatment.
According to my Lyme doc, it is neurological pain (lyme attacking nerves) not inflamamtion, which means ordinary painkillers won't do much to help it. My doc prescribed lyrica to calm it down, and that worked well. I was not too keen to add yet another drug to what I was taking, but with lyrica you start with a very low dose and gradually build up till the pain has gone, if necessary. For me a very low dose was enpough and after a while I didn't need it. (If, like me, you get diabolical itching problems or other nerve-related symptoms, lyrica helps with all of those too BTW).
Another problem I gotm that the dentist and I concluded was lyme, was random toothache. I had X rays that were all fine. As Jackie said, you definitely should get it checked by the dentist because you can have referred pain from other parts of the mouth or head, that seem to be pain in your face - dentists know how to track these things down to the source.
Thanks! I'm definitely getting it checked out, but am so glad to have people out there to reinforce the "you probably aren't nuts" thoughts that I tend to talk myself out of once in awhile.
I think the hardest thing about all of this is the toll it takes on your psyche. You go to dr. after dr. to find someone who will find SOMETHING that will help you feel better, and so many of their tests come back telling you that you are fine that even you start to wonder if it isn't psychosomatic. Even though you KNOW there is something really wrong--all those tests can't lie--can they? And the Lyme controversy scraps with you too, at least it does me, because of my environmental science background. The CDC science etc. is a solid read on the surface, but the ILADS stuff is definitely eye opening. The problem is that there are some far out things mixed in with the really good questions and research that make it harder for some scientists/doctors to take the whole of the work seriously. And, as with ANYTHING that can bring in money--there are some quacks, though I believe most are honest and hard working scientifically minded MD's and PhDs with good work behind their actions. Bottom line for me--it's like the little devil and angel that sit on the shoulders of people on sitcoms arguing back and forth about which is right and which is wrong and me in the middle just trying to figure out how to get well again.
Even now that I have what my LLMD calls a definitive diagnosis of Lyme through a company called Neuroscience my background training leaves me with just enough questions to cause me problems--it would be so much easier just to let it go already--but my stupid brain won't let me do that. The test looked for proteins specific to Lyme and found me positive for p100 and others and also found that I have cytokine markers for active inflammation (active infection). That should be that. But outside of the company itself, I can't find any research out there that shows that their tests are valid, nor can I find anything research to show that they are reliable for diagnosing Lyme. But I CAN find articles about the company that claim that they are NOT--problem? Yeah--the articles are written by members of the CDC committees that fight against the idea of chronic or latent Lyme--so no wonder they find it "bad." But neither the company nor their detractors are citing any EVIDENCE from research--and my inquiring mind wants to know--
Do any of you know anything about the company Neuroscience--outside of the company itself? We all know about iGenex--and my tests (antibody specific) from them was negative--but the Neuroscience was positive--though it wasn't looking for the antibodies it was looking for the Lyme--scientifically plausible (I've done it myself for other organisms) but not sure about the science in this particular case.
I alas am not scientifically trained, but have found my way to the ncbi website or whatever it's called that accesses and indexes scientific/medical research papers from all over the world, and it's a much broader picture than the CDC would have you believe. One of the papers that finally gave me me some focus on the whole situation was found there.
Scandinavia has produced some interesting work on Borellia, and I would suggest you dig around in that if you are so inclined ... given you background, you could post some little tutorials here if you find it interesting and helpful. Here's the intro from one article I found interesting, from 2008:
www . jneuroinflammation . com / content / 5 / 1 / 40
Journal of Neuroinflammation -- Volume 5
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
Judith Miklossy1 , Sandor Kasas2 , Anne D Zurn3 , Sherman McCall4 , Sheng Yu1 and Patrick L McGeer1
1Kinsmen Laboratory of Neurological Research, University of British Columbia, 2255 Wesbrook Mall, Vancouver, B.C. V6T1Z3, Canada
2Laboratoire de Physique de la Matière Vivante, Ecole Polytechnique Fédérale de Lausanne, 1015 Lausanne, Switzerland and Département de Biologie Cellulaire et de Morphologie, Université de Lausanne, 1005 Lausanne, Switzerland
3Department of Experimental Surgery, Lausanne University Hospital, CH-1011 Lausanne, Switzerland
4Pathology Laboratory, U.S. Army Medical Research Institute of Infectious Diseases (USAMRIID), 1425 Porter St., Ft. Detrick, MD 21702-5011, USA
Journal of Neuroinflammation 2008, 5:40doi:10.1186/1742-2094-5-40
The electronic version of this article is the complete one and can be found online at: http://www.jneuroinflammation.com/content/5/1/40
Received: 15 April 2008
Accepted: 25 September 2008
Published: 25 September 2008
The long latent stage seen in syphilis, followed by chronic central nervous system infection and inflammation, can be explained by the persistence of atypical cystic and granular forms of Treponema pallidum. We investigated whether a similar situation may occur in Lyme neuroborreliosis.
... and it goes on at length from there.
But back to your post above: I don't know anything about Neurosciences lab, but my LLMD used IGeneX, as do many others. There is lots of mudslinging by the CDC types, but until the CDC types come up with better reasoning than 'BECAUSE I SAY SO', I'll keep plowing ahead.
You say in your message above: "We all know about iGenex--and my tests (antibody specific) from them was negative" -- did your doc have them test not for antibodies, but to do the PCR test, that to my limited understanding looks for bits of Lyme DNA, not for your body's immune system reaction TO Lyme?
There is scoffing at the notion of such testing from the usual CDC etc. suspects, but to my understanding it's better (direct) evidence of infection. I do not know of any published materials refuting IGeneX's DNA test approach, just backbiting and rudeness from the CDC/IDSA crowd.
IGeneX has a good website and they are nice people, so if you have questions of a scientific bent after you read their site, you might contact them. I have heard of others with scientific-y questions doing that.
Sorry to ramble here, got interrupted.
But most importantly, when you are having an in-brain conversation with yourself and the argument on the table is 'you probably aren't nuts', change that to read: 'you aren't nuts.' Full stop.
I can relate to your struggle to find the truth. We patients are indeed caught in the middle. My idealism has been shattered as I realize how many smart and influential people go along with the flow and follow who they perceive to be their leader, not necessarily actual truth. But I guess that's human nature, right? It makes me wonder what else to be suspicious of.
But then Lyme is in a class by itself. It doesn't follow the "rules" that we expect it to. It reminds me how incredibly powerful a paradigm can be...how a perspective can block us from seeing something different. I think your natural skepticism and desire for information to be a very good thing. It's the peole who blindly follow someone else who often get led down the wrong path.
I think you would really like the book "Cure Unknown" by Pamela Weintraub. She is a science writer and editor and tells the story of both her family's infections and the controversy and how it developed and evolved. I am not in the medical field, but I have been in the technology field and I am very analytical. I had trouble putting the book down.
She also describes the concept of circular thinking in many of the studies done by the IDSA et.al. How they design a study intended to prove or support what they already believe. None of these studies are ever designed to try prove themselves wrong. (I have read several of them... It's true.). Another thought...I just read that a review of many cancer studies done in the past showed that most of them had either been proven wrong or couldn't be duplicated. So, it's not just in the Lyme world that studies and their conclusions need to be examined closely.
It was about a month into treatment before I started noticing that symptoms in general were decreasing and that I felt a bit clearer. I eventually noticed a clear connection to herxing and abx. Soon you should see your own pattern in how your body is responding to antibiotics.
100 years ago, MS was called "Faker's Disease" by many members of the medical establishment who just didn't believe such a variable and unpredictable diaease could exist. Only with the availability of the MRI did they finally realize the real physical damage of the disease. History is not kind to the doctors who ridiculed germ theory and then more ecently, Dr. Barry Marshall, discoverer of h.pylori as a cause of ulcers. Eventually, the real truth comes out and those who were brave enough to face peer opposition for the sake of the truth are the heroes.
Sorry for going on and on... Guess I'm feeling philosophical today.
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