Aa
Help please!!!!
What can I do? I got bit by a tick about ten years ago and got the bulls eye rash. Weeks later I go so sick it felt like a bus had hit me. I worked through it as long as I could but eventually went to a Neurologist. She tested me and the Elissa came back positive for Lymes, then the Western Blot came back negative. I know without a doubt I have it since I distinctly remember the bite, the rash. I had been in the woods in Washington right before the bite, ironically petting a wild baby deer. I hurt so bad all over and have zero energy, zero concentration, major depression, emotional problems, anxiety problems. I had none of this before the bite. So, since there are so many issues with the Western Blot and false negatives, is there any conclusive test I can take nowadays? It would seem that since it's a spirochete they could simply take a muscle biopsy and put it under a scope to see if i have it. Is that possible?
Best Answer
You're very welcome ... we've all been in your spot in one way or another.
I hope you do pursue a possible diagnosis of Lyme and its co-infections, and then get treated for them. Lyme can cause serious body pain, and whether or not some or most of your pain is from Lyme, it's not possible to tell.
But treating the underlying condition, whatever it is, will allow you to see what's left that's causing such problems for you.
Take care, hang in there, plow ahead -- !
I hope you do pursue a possible diagnosis of Lyme and its co-infections, and then get treated for them. Lyme can cause serious body pain, and whether or not some or most of your pain is from Lyme, it's not possible to tell.
But treating the underlying condition, whatever it is, will allow you to see what's left that's causing such problems for you.
Take care, hang in there, plow ahead -- !
Thanks Jackie, you are an awesome person!!! Having people like all of you to chat with makes this battle that much easier to go through. Right now the primary problems are the terrible spaciness I have constantly now, and the increase in the pain level, requiring yet more medication. I don't want to get addicted to narcotic pain medications, but I have some quality of life now and as long as I take exactly as directed, I won't have to worry about the terrible withdrawls. I used to be in a pain clinic a decade ago, and cold turkeyed off of 120mg. of methadone a day. Fourteen consecutive days of no sleep and it felt like I had the worst flu imaginable. Absolutely nothing helped, except time. Methadone is the hardest pain med to kick. I am on much lower doses of oxycodone, and have no plans on ever quitting them suddenly again. I know I will be on them for life now, because from the Lymes and the many sports injuries to my back over the years the pain is unbearable at times. I broke my lower back skateboarding as a kid, broke it again in Tae Kwon Do competition, and have arthritis in the entire spinal cord. It is what it is, and I know others have it worse, so just grin and bear it I guess!
You have indeed been through the wringer, so it's testament to your strength that you keep plowing ahead and have not given up.
I think the docs are doing the best they can, relying on the 'experts' to interpret your symptoms. Someday this huge scandal will break wide open, but not soon enough.
I don't recall now if LymeTAP was mentioned above -- it's a group that provides financial assistance with testing for Lyme, as I understand. They have a website under that name. Also, an email sent to
contact [at] ILADS [dot] org
can possibly find an LLMD near you.
Don't give up! You are strong minded, it sounds, and that will carry you through. Keep us posted, okay?
I think the docs are doing the best they can, relying on the 'experts' to interpret your symptoms. Someday this huge scandal will break wide open, but not soon enough.
I don't recall now if LymeTAP was mentioned above -- it's a group that provides financial assistance with testing for Lyme, as I understand. They have a website under that name. Also, an email sent to
contact [at] ILADS [dot] org
can possibly find an LLMD near you.
Don't give up! You are strong minded, it sounds, and that will carry you through. Keep us posted, okay?
I am on Medicare with a Supplementary policy also, so I doubt much would be covered. I simply, at this point, just want to be firmly diagnosed. I have absolutely no doubt that it's Lymes. However, my family still believes in our medical system and believe everything they read about Lymes on the internet. I have tried to educate them, because, frankly, I need some help here because I have other problems that preceded Lyme's. Frankly I am a mental and physical wreck that has to take increasingly higher doses of pain killers to have any quality of life. Our medical system, for all it's fancy equipment and specialists for anything and everything, is not as advanced as many believe. Even doctors will often admit this when they cannot find a diagnosis. Why is it people who are not sick cannot just take what I say and how I feel at face value? I have never pretended to be sick, and was healthy as a horse until the damned bite. I have never asked for help for any ailment in life, preferring to suck it up and fix the problem myself. My family admits I have changed drastically in a decade, yet they chalk it up to merely depression. At least I have found this board and a roomie who takes me at face value, because she knows me well enough to know that I am truly suffering here.
Welcome to MedHelp Lyme -- glad you've joined us here.
Sorry you've had such a long road -- hope you're making good progress.
About the LLMDs not taking insurance -- it doesn't necessarily mean that an insurance company will not reimburse for treatment -- I suspect that LLMDs often don't bill through insurance because they don't want to hire a platoon of billing clerks to deal with it all. My LLMD ran a lean medical office and gave me a bill to send to my insurance company for reimbursement. Others here have also said in passing that their insurance reimburses without any questions, so I know that not all LLMDs refuse to take insurance.
And for those docs who don't take insurance, think about the costs any business has: rent, electricity, and especially salaries/wages for the staff, and salary for the owners (the docs), who have management tasks as well as spending time staying current on developments in the (medical) field.
We've all become used to a small co-pay to an insurance company, and if your employer pays for your insurance coverage, you are largely insulated from the actual cost of your medical care. I have a small business -- my own personal medical insurance premiums (no dental, no vision) is $500/month just for me, and it's a high-deductible plan -- and I'm in a preferred risk category, meaning the insurance company isn't expecting to pay a lot of ongoing high-cost medical expenses for me.
There may be some aspect of LLMDs not wanting to hire a huge staff to fight with the insurance companies for reimbursement and having insurance companies micromanaging the treatments ... but that's the trade off. An option is to sign up for Kaiser or some other managed care program ... but they don't 'believe' in Lyme beyond a couple weeks of doxy and out the door. So I won't be taking a vacation or getting a new car to replace the 13-year-old clunker in the driveway anytime soon, but at least I'm well.
There are also some funds available for the truly destitute, through foundations like LymeTAP, which provides funding for initial testing, and others that may help with the cost of meds.
Oh, and when Obamacare kicks in? The IDSA will rule, and anything beyond a short course of doxy will be history, regardless of ability to pay, unless some docs find a way to treat 'off the grid'. Remains to be seen, but if that alternative is available, it won't be cheap.
But back to the beginning: I agree that with treatment, recovery is indeed doable. And definitely worthwhile.
Sorry you've had such a long road -- hope you're making good progress.
About the LLMDs not taking insurance -- it doesn't necessarily mean that an insurance company will not reimburse for treatment -- I suspect that LLMDs often don't bill through insurance because they don't want to hire a platoon of billing clerks to deal with it all. My LLMD ran a lean medical office and gave me a bill to send to my insurance company for reimbursement. Others here have also said in passing that their insurance reimburses without any questions, so I know that not all LLMDs refuse to take insurance.
And for those docs who don't take insurance, think about the costs any business has: rent, electricity, and especially salaries/wages for the staff, and salary for the owners (the docs), who have management tasks as well as spending time staying current on developments in the (medical) field.
We've all become used to a small co-pay to an insurance company, and if your employer pays for your insurance coverage, you are largely insulated from the actual cost of your medical care. I have a small business -- my own personal medical insurance premiums (no dental, no vision) is $500/month just for me, and it's a high-deductible plan -- and I'm in a preferred risk category, meaning the insurance company isn't expecting to pay a lot of ongoing high-cost medical expenses for me.
There may be some aspect of LLMDs not wanting to hire a huge staff to fight with the insurance companies for reimbursement and having insurance companies micromanaging the treatments ... but that's the trade off. An option is to sign up for Kaiser or some other managed care program ... but they don't 'believe' in Lyme beyond a couple weeks of doxy and out the door. So I won't be taking a vacation or getting a new car to replace the 13-year-old clunker in the driveway anytime soon, but at least I'm well.
There are also some funds available for the truly destitute, through foundations like LymeTAP, which provides funding for initial testing, and others that may help with the cost of meds.
Oh, and when Obamacare kicks in? The IDSA will rule, and anything beyond a short course of doxy will be history, regardless of ability to pay, unless some docs find a way to treat 'off the grid'. Remains to be seen, but if that alternative is available, it won't be cheap.
But back to the beginning: I agree that with treatment, recovery is indeed doable. And definitely worthwhile.
Hi, my story is very similar as my bite was when I was 21, complete with giant bullseye rash that wrapped around my thigh, but didn't start having really severe problems until my daughter was born 9 years later. The doctor who i went to with that bullseye, a sure sign that you were exposed to Lyme, dismissed my rash and didnt even run a test because it was a brown tick, not a deer tick, that had attached itself to me. Now, many, but not all, Lyme Specialists recognize that it is vector bourne, including all ticks, spiders, fleas, etc. In retrospect, I see that I did have symptoms, more memory related, which at that time I associated with a changing brain in my blossoming 20s, and the large muscle weakness, which I attributed to the boots I was wearing to work. All the joint pain for me was so minor at that time I just figured it was from a lifetime of riding horses, and hitting the ground many times.
Once my daughter was born, and I had a number of other big stressors happen at the same time, I got significantly worse but, in the beginning, I just thought it was part of Mommyhood. Complete exhaustion. incredible pain that migrated, itching all over even though there was no visible rash, severe migraines that would render me useless for up to 3 days at a time (when I had never had even small headaches before), and the one that took me to the doctor first was the tingling, pain and numbness in my feet, especially when I first got up in the morning.
I am sure this next part of my story is typical. I was tested for everything bit Lyme, I talked them into at least testing me with the CDC test, which is considered to be between 25-45%accurate. I had one positive, out of 3, leading them to call it negative. On the IGenX test, I was certainly positive for both Lyme and Bartonella.
Long story short, my Lyme Specialist saved my life. I have been in treatment pretty much continually for 4 1/2 yrs. On a cocktail of Doxy, Rifampin, and Zithromax alternating days, for 2 1/2 yrs. was off for a yr and have been back on Ceftin and Doxy since October but have added something for BioFilm (Feel free to message me about that) and am seeing some great results! It's definitely a disease which you have to educate yourself about. I got so lucky because my friend, who is also an acupuncturist was a patient of the Lyme Specialist. I've heard nightmare stories about docs that charge exorbitant amounts of money per visit and, the nature of the beast that is Lyme , the true Specialists can't take insurance.
Good luck! I promise, with the right treatment, you will get back to close to normal at least.
-E
Once my daughter was born, and I had a number of other big stressors happen at the same time, I got significantly worse but, in the beginning, I just thought it was part of Mommyhood. Complete exhaustion. incredible pain that migrated, itching all over even though there was no visible rash, severe migraines that would render me useless for up to 3 days at a time (when I had never had even small headaches before), and the one that took me to the doctor first was the tingling, pain and numbness in my feet, especially when I first got up in the morning.
I am sure this next part of my story is typical. I was tested for everything bit Lyme, I talked them into at least testing me with the CDC test, which is considered to be between 25-45%accurate. I had one positive, out of 3, leading them to call it negative. On the IGenX test, I was certainly positive for both Lyme and Bartonella.
Long story short, my Lyme Specialist saved my life. I have been in treatment pretty much continually for 4 1/2 yrs. On a cocktail of Doxy, Rifampin, and Zithromax alternating days, for 2 1/2 yrs. was off for a yr and have been back on Ceftin and Doxy since October but have added something for BioFilm (Feel free to message me about that) and am seeing some great results! It's definitely a disease which you have to educate yourself about. I got so lucky because my friend, who is also an acupuncturist was a patient of the Lyme Specialist. I've heard nightmare stories about docs that charge exorbitant amounts of money per visit and, the nature of the beast that is Lyme , the true Specialists can't take insurance.
Good luck! I promise, with the right treatment, you will get back to close to normal at least.
-E
Thanks for the comments, but I actually intended this post of mine to go to "Ask a Doctor" instead of the regular board :) Oops, chalk it up to Lyme's related dementia. I never realized spacing off was symptom, because I space so bad my roomies have to remember everything for me, and I used to have, believe it or not, a photographic memory up until the bite. I used to do taxes for people for free, fill out paperwork for those who couldn't, etc. Now I can't even seem to pay a bill on time because, again, I space it. I write stuff down and then a week later wonder what the hell it was I wrote down. I am just about 47 with the memory of a fence post. It's either laugh about it or cry about it, I choose to laugh. In fact my roomies get a kick out of it when, on my worst days possible, I laugh and say "good one God, give me another". I used to be very tough. I used to spar with the Olympic Bronze Medal winner in Tae Kwon Do, I used to box, etc. Now, after a decade plus of this, I feel like the biggest wimp on the planet. It just wears you down, especially when you once were very athletic and active. Anyway, as usual, thanks for the great info my friends.
I agree about 'Under Our Skin', with the proviso that not everyone gets symptoms as bad as some shown in the film. I was very ill, and the worst I got was feeling like I had a bad case of the flu and a bad hangover at the same time, 24/7. So that's bad enough, but I never got the really bad stuff shown in the film, and many of us do not.
Jackie did a great job as usual explaining everything. I would add that when you feel strong enough, you may want to watch the documentary "under our skin" it's difficult to watch at first but gives a clear idea of what we lymies go through and you can see it free online if you google it.
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The Lyme spirochetes are elusive, able to hide in cartilage and other obscure places in the body, so that the usual tests often miss them. The Western blot and ELISA test combo that 'mainstream' [nonLLMD] docs rely on were developed for epidemiological surveillance of Lyme, so the bar was set very high to be sure the test data were pure ... in other words, to avoid false-positive tests. (As to biopsy for direct observation of the spirochetes, the Lyme bacteria are able to hide in areas of low blood flow, like cartilage, where the immune system does not reach, and biopsies might not either.)
Strict test standards are nice for research, but not so nice in real patients, because truly infected people then get missed. In addition, the standard tests look not for *direct evidence* of Lyme, but IGeneX now has a test that looks not for the immune system reaction to Lyme, but instead for bits of spirochete DNA. NonLLMDs scoff at IGenex and tend to rely solely on the overly strict W.blot/ELISA combo.
To compound the problem, neurologists (like the one who ran the tests and said you didn't have Lyme) are known very well as some of the biggest 'Lyme deniers' in the medical field. It's all political, and if you want to read up, I suggest Weintraub's 'Cure Unknown', now in paperback, I think. It intersperses real patient experiences with chapters on the science aspects -- very well done and highly recommended. After reading it, you will understand why Lyme-world is so strange.
ILADS is the main voluntary group for docs who 'believe' in Lyme as a serious ailment, and there is much of interest on their website at ILADS [dot] org. Burrascano's treatment guidelines are a good place to start.
You'll need a Lyme specialist of a progressive bent, called by patients an LLMD, short for a Lyme-literate medical doctor. Not a degree or diploma, but patient slang for a doc who think big thoughts about Lyme. For historical reasons, infectious disease docs and neurologists and rheumatologists are among the most vocal Lyme deniers, and while they may hold themselves out as 'Lyme specialists', their narrow view of Lyme as being hard to get and easy to cure blinds them to effective diagnosis and treatment. Standard IDSA [Infectious Disease Society of America] treatment for Lyme infection of any duration is a few weeks of doxycycline, but that is apparently ineffective except immediately after infection, and also does not take into account separate medication needed for co-infections carried by perhaps half of all Lyme ticks: babesiosis, bartonella, ehrlichiosis, and some others.
If a nonLLMD treats you for Lyme for a few weeks and your symptoms persist after the few weeks of doxy, you are labeled by IDSA standards as having 'post-Lyme syndrome', meaning you immune system is still reacting to a now-cured infection, and you receive no further treatment.
Like TB and syphilis, the Lyme bacteria have survival tricks that the IDSA approach does not acknowledge. Hence the need for an LLMD to diagnose and treat.
My suggestion:
-- find an LLMD and get a work up
-- get tested for whatever the LLMD thinks may fit your history and symptoms
-- get treated
-- get your life back and enjoy
In the meantime, you could try taking magnesium supplements (ending in '-ate' such as magnesium (Mg) citrate, orotate, aspartate, malate, which may help your cramps and twitches and anxiety a bit. Lyme bacteria use up magnesium in the body, and muscle twitches and cramps and also irritability are common symptoms of Lyme. BE SURE to tell the LLMD all the meds, supplements and vitamins you are taking, including Mg, because that can mess up the diagnosis.
Finding an LLMD in Oregon is your next hurdle. You may need to travel. Search online for
Oregon Lyme
and see what you get.
Sorry to overwhelm you with all this -- let us know how we can help -- we're not any of us medically trained that I know of, but we have each danced with devil Lyme. Best wishes --