I've recently been diagnosed with Lyme and have had the symptoms for 3 or more years. Part of my problem comes because I was in the first Gulf War and became ill shortly after taking the PB pills and got worse over the last 20 years. I know that is part of my illness, but I started having other weird symptoms like sore rib cage and my feet hurt when I got out of bed in the morning and had not heard other vets talk about these symptoms.
Three weeks ago I went to a LLMD and she tested me for Lyme and called last week to tell me I'm positive. I'm currently taking Doxycyc since my first appt with her as she believed I would come back positive after describing my symptoms. Follow up appt in a week, so will find out more then.
My question is, I'm not sure how long I've been positive, but at least 3 years maybe 6 years, can this antibiotic help cure it or will I always have symptoms? I live a very healthy life, no alcohol, tobacco, caffeine and eat almost the same thing every day to help lessen the nausea. How have others done on the antibiotic treatment that were diagnosed in the late stages?
Thanks to everyone for sharing how you are dealing Lyme.
Sorry to hear you are not feeling well -- you are already doing the things I would do: find a knowledgable MD and get treatment and take care of yourself. Your MD sounds very 'up' on Lyme, which is a distinct advantage. Some of us wander from doctor to doctor for years and are not properly diagnosed or treated.
I was struck in particular by your sore ribs and sore feet comment ... I have not heard anyone else mention these in particular, yet they are symptoms I have had. Lyme and its coinfections that often come from the same ticks have ever-shifting symptoms from person to person and in the same person over time. My ribs are sore now, at the lower edge where the cartilege holds the rib bones together, and it may be because Lyme bacteria like areas of low blood flow, like cartilege, which is a reason they like to hang out in knees: cartilege, and low blood flow.
The sore feet triggered a memo for me that I had not thought of for several years: when I would get out of bed in the morning, the soles of my feet would be sore, and I would hobble around for 15 minutes till it stopped. At the time, I thought I was just wearing shoes that needed more padding in the soles, but maybe not! I've never connected it with Lyme, but it's certainly interesting evidence that I first became infected earlier than I had originally thought. Maybe others here will comment on the same symptom.
Treatment acts differently in different people, and seems to be faster in some than others, as well as more complete in some than others. Lyme is a tricky disease to treat because it hides from antibiotics not only in cartilege but also in hidden cyst-like areas it creates inside the body, which protect it from antibiotics. (Bugs with a storm cellar, which anyone who has lived in the Midwest can appreciate. Ha.) Those cysts can be busted by certain antibiotics, but I'm not sure if doxy is on of them. Anyone got a comment on that? Doxy is a good place to start, if nothing else, but your MD may change up the meds to confuse the bugs once your test results are back. I have read that doxy is hard on the stomach, and if it's too bad, maybe your MD can switch you to something else.
I too skip alcohol, caffeine and tobacco, and eat a careful diet, which one of my MDs applauded, to lessen the drag on the body while it's fighting. Now that I am somewhat better, I am walking a quick mile every other day on average, and am trying to build that up.
I too have the goal of being completely well, but it's not been as quick a cure as I thought or hoped. Then again, I got another tick bite a year ago and got Lyme and a different coinfection, so I'm back at square one in some ways, but at least I know what it was. I'm not medically trained, but I have no reason to think from what I read that it is impossible to be fully well or at least so close to being fully well that it feels that way. Given the hiding habits of Lyme, there may always be little bits of the bugs hiding out, but in thinking long term, I am considering eventually being on herbal medication for maintenance; still thinking about how this will play out.
When you see your MD again, I would suggest that you always get paper copies of all your medical tests for your own files. Things that seem inconsequential now may mean something in a later re-reading, and I have found that getting copies later is very difficult, because I am asking for stuff I don't have, and it's hard to know what to ask for if I don't know what's in the file. File clerks hate making copies, and I hate arguing with them. Bleh. It's also not uncommon to cycle through several MDs during treatment, so being able to provide complete copies of all prior testing can be important...but maybe you will be lucky and have hit the jackpot with your current MD.
You ask about results of treatment long after infection: because it's hard to know sometimes when we were infected, I don't know that there is much knowledge on this point, except that getting treated right after a tick bite is always better than waiting. Sooner = better. Later = still treatable. I was afraid of the meds when finally diagnosed, and dragged my feet about taking them, but I still had a very good response and was just about well when I got that other tick bite. Coinfections can be tricky, because the tests are sometimes not that accurate (just like with Lyme), and the symptom overlap with Lyme is different with each coinfection, which confuses the diagnostic picture.
Please let us know how your next appointment goes and what your MD recommends! Best wishes to you, and thank you for your service to our country.
Thanks for the information, sounds like it's a guessing game for most at this point. My Lyme disease thought came after reading this article in the Fibro newsletter and then went to the Lyme disease website and clicked on the symptom list. After printing it out and checking off more than 50 percent of the symptoms including the sore ribs and sore feet I decided I better look for a LLMD. Then I clicked on doctor referral link and found a doctor in Seattle who was very thorough. My Dr. tested for mycoplasm too but I came up neg for that. I think she wants me to do a more in depth test when I go back and insurance won't pay?? I guess there is big controversy over Lyme diagnosis? You answered one of my other questions, can you catch it again after you've had it once. Bummer you can. Makes me want to wrap myself in plastic before going for a hike when I get better. What you wrote about them hiding in deep places also explains why my pain got so much worse after having some massage work done...ouch. Is the sauna good to sweat it out?
Thank you, I love our country and would do it all over again even being sick.
I've read in stray places that troops came back from Iraq with some odd ailments, some thought to be chem/bio, but I've also wondered if some are 'just' Mother Nature's tricks ... bacteria, fungi, virus, whatever. (For example, we lived in Arizona about 20 years ago for a while and were surprised to learn of Valley Fever ... endemic to the low desert there. So if Arizona can have unique bugs, why not Iraq? Also there is something in the Ohio River Valley, a form of histoplasmosis perhaps, that affects quite a few, some mildly, others worse.)
But back to your situation. Did you MD test you for babesiosis, bartonella, Ehrlichiosis, and a couple of others also, in addition to mycoplasma? They are common Lyme coinfections, which non LLMDs aren't necessarily aware of. They each have their own rudeness to contribute to the misery and some need different treatments than Lyme.
Wonko, who posts here pretty often, has just started deep tissue massage and reports that she got significant symptoms after the first massage, clearly stirring the bugs up and about. Do you know the term 'Herxheimer reaction'? It's called a Herx for short ... the same thing you experienced after massage, but happens also during abx and herbal treatment as the bugs die off and release 'toxins' (tho I don't know precisely what ... dead bug bits and gunk is how I think of it.) It's a brief period of feeling worse before feeling better again, and is part of the process. Some people get it worse than others.
Insurance often will not pay a lot for these tests because of the controversy in the medical community. Depends on the insurer. There is a lab called IGenex in Palo Alto CA that LLMDs often use to run tests which are thought by many LLMDs to be superior. My LLMD uses LabCorp for other stuff, but for the fancier tests that IGenex does, that's who my tests go to. $$$ yes, but ...
There is a huge controversy over Lyme, I won't bore you with the details, but it may help you to make decisions about your own approach to read up. The ILADS [dot] org website is full of information, incl. treatment guidelines. Don't get overwhelmed by it ... it will start to make sense after a while.
Lyme will require of you a level of understanding about the disease that nothing else has in my experience -- the medical community is all over the place, and the patients are caught between the warring camps. Knowledge is power, but the MDs still hold the prescription pads, so we're at their mercy at a certain level. Finding a copacetic LLMD is the hardest thing of all, one whose approach suits you personally. There are a lot of MDs who detest the ILADS approach, and there is much ignorance (and arrogance) about Lyme+ among the medical community. I went through 20+ MDs before getting a diagnosis, and I was terribly ill.
I think sauna may well help, but there's also an issue of heat intolerance in (some/many) Lyme patients. Body temp is often low (mine has not gone above the low 97s for a few years now), and it's not entirely clear why this happens. The bugs seem to like the thermostat set low, and they monkey with the endocrine system in ways so complex I still don't understand what I read about it. There are others here who know more about it than I do. My LLMD tried to put me on thyroid supps, but they upset my stomach, so we backed off. Sometimes Vitamin D seems low in some Lyme patients and MDs want to supplement ... mine was low early on, but is better now. Dunno why. I did not supplement that on the theory that it's not a vitamin like B or C, it's a semi-steroid that really isn't a true vitamin, and there may be a reason my body is refusing to up the D levels. My approach is to get as much sun as I can, tho it's not all that much.
I have become suspicious of the fibromyalgia diagnosis. MDs seem happy to say 'we know you hurt but we don't know why but that's okay and we're going to treat you anyway' -- but these credulous MDs are the same ones who scoff at Lyme, for which there is scientific proof of cause. One of the endocrinologists I saw pre-Lyme-diagnosis was happy to tell me I had fibro if I would have accepted the diagnosis, and wanted to dose me up with some form of speed to counteract my fatigue. I wanted to treat the disease (whatever it was) and not just the terrible fatigue and loss of intellectual function, and the kindly and well meaning MD was wise enough to back off ... but there are a lot of MDs who write the scrip and shove you out the door.
Well, enough from me for the night. Thanks for the memory-nudge about sore feet. That is verrrry interesting and is another piece of the puzzle that tells me I was likely infected some years before the big kaboom hit me upon (re)infection with Lyme and babesia.
I don't get sore ribs much, but I sure do get sore feet. Especially first thing in the morning, or even if I've been sitting for awhile, it hurts to walk on my feet. I think this is due to inflammation building up when I am at rest.
I also get pain in my shins, which to my understanding is more hallmark of the Bartonella co-infection.
I do believe that even when caught late, Lyme and other TBI (tick-borne infections) can be treated. There are differing opinions as to weather it can be fully erradicated or simply beat down enough that you don't feel sick anymore, but regardless of such details one can improve and restore some normalcy in life, which is what matters most to many.
Since I don't recall the bite or a rash, I don't know when I got it, though my best guess is summer '02. I was diagnosed late '08, and have been treating since then. Foot pain is one of the symptoms I had long before I knew I was sick, I just thought I was showing signs of early arthritis or something, never saw a doc about it.
It does stink but we do not build immunity against this stuff, so reinfection is always a possibility. It is tempting to stay away from possible exposure, but I say go ahead and live your life. I somehow got this even though I am a complete indoors person. I don't even like picnics or walking on grass, largely because I'm very afraid of bugs and insects. I don't do any outdoor activities, and still managed to pick this up somewhere.
So I think avoiding it is impossible. Instead, focus on detection: Check yourself for ticks after you go out hiking, wear tick repellant, tuck pants into socks, wear light-colored clothes to make it easier to spot ticks, etc.
I second the well-wishes and thanks for your service.
PS-Flagyl and Tindamax are what I have read to be "cyst-busters," also possibly Plaquenil. However, a lot of LLMD's wait until later in treatment to add a cyst-buster, as it can be overwhelming if done right away. I didn't start Tindamax until almost a year into treatment, and the first round knocked me down very hard!
Went for my follow up today and my doctor is now testing for the other tests you recommended, babesiosis, bartonella, Ehrlichiosis. What are all these bugs and why do they go with Lyme? I should know in 3 weeks. Feeling sick to my stomach most days since starting the antibiotics...from what others say sounds like the norm. What is the length of time most are on the meds? or is everyone different? Not much of an appitite either, any suggestions of what to force down. I've never been in love with food or eating it but know that I need something in my stomach....the smell of food is turning my stomach. Any herbs, teas that might help?
The doctor put me on Rhodiola to help support my adrenals and cut down on the mid-day fatigue. That has helped.
Thanks all, glad I'm not alone in this journey.
This sounds like progress! Not easy, I know, but progress nevertheless.
You have conquered the first problem: finding an MD who takes this all seriously.
I have heard that doxy can be rough on the stomach. If it can be taken with food, that might help.
There are some herbal teas that are supposed to be good for what you describe, but I'm not good on that sort of thing. Someone else here might be able to say, or a web search might give some ideas.
Your MD should know that you are having a hard time with the meds, so adjustments can be made. Doxy seems to hit different people different ways.
Rhodiola I also don't know -- but you are fortunate your MD has an open mind about non-antibiotic treatments. Sometimes Mother Nature really does know a trick or two.
I was reading over the weekend about the similarities between Gulf War Syndrome and Lyme. Not that they are the same, but that they share some similar characteristics that it took a while for the medical community to recognize and appreciate. Here is a link to a summary of one of the articles, with other articles mentioned in the upper right hand corner of the screen: www. ncbi. nlm. nih. gov /pubmed/ 15694687 [you'll have to take the six extra spaces out of that citation ... the bot blocks web links here sometimes. (The link is to the National Institutes of Health (NIH), not what anyone would call a "silly Lyme website".) There are also many strains of Lyme and coinfections that there are not tests for, so having an MD who watches not just the test results but also your symptoms in order to diagnose and treat is as it should be.
Take care, hang in there! You're already making progress.
Hi. I wanted to say, a doctor named Garth Nicolson has done a lot of research on Gulf War illnesses. There's quite a history to his involvement. He did a study, and believed that mycoplasma infections seemed to be a big factor. The study he did was, I believe, for the military. After he did the study, he was given some type of honorary rank--and then, right after, his report was dismissed in favor of findings that it really didn't exist (Gulf War syndrome). It's a long and conspiracy-type story, but apparently true.
Anyway, he does lots of research on this, lyme and other chronic illnesses. My understanding is that his medical group will help give people guidance, if not treat directly.
He has a very impressive CV, or medical/research history behind him. I don't know if he's right or not, but he's the real thing as far as a serious and accomplished researcher.
Here's a link, and if you go to their home page, you can find out more.
Further to the Gulf War Syndrome matter, here is a paste from the PubMed website I indicated above (at that site, there are also links to other articles on the topic). This may or may not be Nicholson's thesis, but here it is fwiw.
Med Hypotheses. 2005;64(4):717-20.
Is Gulf War Syndrome actually chronic Lyme disease?
Department of Accident and Emergency, College of Medicine, University of Wales, Heath Park, Cardiff United Kingdom, Cardiff, UK. ***@****
Symptoms of Gulf War Syndrome and chronic Lyme disease are very similar. Lyme disease is a condition which can be difficult to diagnose since one of the main features of the condition, the erythema migrans rash, may be absent or overlooked and serological testing for Lyme disease may be falsely negative. Symptoms of Lyme disease may not became apparent until years after exposure to the causative organism. Military personnel during training in the field are at risk of tick bites and it may be that those who developed Gulf War Syndrome entered the conflict with latent Lyme disease. There has been no systematic examination of Gulf War Syndrome sufferers for chronic Lyme disease and it is hypothesized that chronic Lyme disease has been overlooked as a cause of Gulf War Syndrome. To address this it is suggested that sufferers of Gulf War Syndrome or similar illnesses should be examined by physicians who have experience diagnosing and treating large numbers of patients with Lyme disease.
I also just got diagnosed with late stage Lyme disease too, I'm thinking got it sometime in 2000-2002. Anyway, just like you, I'm only on Doxy right now , 400 mg. The first day I took it I throw up, and was feeling nauseous every time I would take it and would cry. I'm supposed to take this for 2 months. So, I started taking it with a little bit of food, and it helped a lot. Label says not to take with food, but I figured if I don't have full blown meal, just a piece of bread with butter and jam, it will be ok. It has helped a lot. I'm not nauseous anymore, also I think your body needs some time to adjust itself to new drug. Do explore herbal supplements options too, they help with Herx reaction (when bacteria dies in you and releases neurotoxin). Also, do not forget to take regularly probiotics. Otherwise, your stomach will hurt like hell and you may get overgrowth of yeast.
Feel better :)
Wow! I just saw this post from summer 2010. I have been wondering if Gulf War Syndrome was due to an infection, whether a spirochete or mycoplasm, or whether it was somehow related to Lyme. I'm realized surprised that the big government study on Gulf War Syndrome didn't test them for Lyme Disease. I guess they assume there's no Lyme in Kuwait or Iraq.
I stumbled across a couple of papers the other day from a doctor and nurse who believe Sarcoidosis is the result of an immune system overreacting to an infection, possibly a mycoplasm that we can't detect. They are treating patients with long term antibiotics and they not only have Herxheimer reactions, they get better (not sure if any are cured, though).
There are insect borne infections in the Middle East. Sure makes one wonder!
Unfortunately true. Did you see the recent news story where Yale published a new map of risk of Lyme Disease? It only covers the eastern half of the country and it shows low risk in the South. A Yale researcher is quoted in the article saying that any positive Lyme test for someone in the South should be highly suspect unless they have travelled to an area of high risk. Never mind that the CDC map of known Ixodes tick populations includes the ENTIRE SOUTH!! Perhaps the reported incidence of the disease is so low there because doctors rarely ever diagnose it because researchers at "prestigious" institutions like Yale all but instruct them not to.
The answer lies in the immunizations given the troops. Most all of the diseases/coinfections are from poultry. What's the connection? Many of the immunizations were made from bacteria grown on fertilized eggs. Only way to produce vaccines in the large quantities needed at that time. Eggs produced by chickens fed antibiotics. That causes many of the vermin to assume mycoplasmal form where they are small enough to infect the bacteria being grown to produce the vaccines. If not thoroughly killed, a mycoplasma inside a bacteria could get free of that bacteria once inside its new home and infect the new host. They are often misdiagnosed, and never receive treatment for what they really have. It isn't nothing new, this goes back to WWII veterans, most of whom have unknowingly succumbed to the effects.
Hang in there..My experience is the doxy causes nausea. I lost a lot of weight because I couldn't stomach anything. The only anti-nausea thing that worked for me is slivers of raw ginger....I tried every med out there, but the cheapest and simplist solution worked.
Once I switched off the doxy, the nausea when away.
I've often wondered if there's a good reason to use doxy instead of other related meds that don't have so many side effects. I have read that doxy has longer activity or something, but wonder if that good point is lost in the other problems it causes. Anybody got any ideas or experiences on that point?
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