My story is long, but I’ll try to break it down so it still feels like we’re all gathered round the water cooler… My brother is a a huge enthusiast of your and told me to give you fellas a try to see if you might be able to help… I got lyme disease 3 years ago, and after a year and a half of antibiotics, I’m still mega tired, and can only barely work part time. I’ve kept the muscle wasting to a minimum by taking up lifting about 3 times a week for about 30 minutes each, and I get aerobic stuff in when I can to keep the fat mass down… In comparison to me prior illness, I am about at 60%. Now, I get to do all this at the luxury of my parents, since the illness, i’m sort of home bound (and unhappily so)… I have had the docs run a MILLION tests, food allergies, etc… here’s what came up… I have a low white blood count, and thyroid antibodies… however, thyroid hormone is “normal”… could this in any way explain why it takes me what feels like forever to recover from a half day of working, or working out? When I do anything vaguely normal, like going dancing, or working out, or working for 6-8 hours, it seems like I HAVE to take a day or two just to recover. Would the antibodies explain this at all? I have been told that even though I have the antibodies, my hormone levels are normal and therefore I should be normal… I know this isn’t your normal thing, but honestly, I think I’m done talking to docs who do everything by the book. Thanks…
Have you looked into the possibility of Epstien Barr?
Or you could quite possibly have Hashimoto’s thyroiditis- a condition where certain antibodies make it impossible for your body to use the thyroid hormone that your body is producing… Supplying your body with additional thyroid hormone is an option (either via Armour thyroid or Synthroid) because it would be like sending in many more troops to get past strong enemy lines. Only very few troops in your original squad were able to make it past the enemy. (I think I’ve been watching too much news lately)
Ok…please do not take this personal it is actually a very normal condition. No offense but it sounds like Severe depression see a psychiatrist. Have you tried prozac?
Knuckle dragger you sound Just like all the other doctors who said the same thing to my sister, by the way my sister is tiffany. It took her a year to finally find a doctor that would help her. He did a western blot test and it came back positive for lime. But the insurance company said that all you need to cure lime disease is six weeks of anti biotics, when all the experts in the world said it took at least three to four months of antibiotics if you catch it in the begining not if you have had it untreated for eight months to a year. So I get a little angry at people and doctors who say shit and have no idea what they are talking about.
It could be thyroditis, but what test did your doc perform? Was it just TSH? Free T4, T3, and TSH? If it’s the former, you should get the latter performed.
It could also be Lyme. Since the Lyme spirochete gets through cell walls and tissue membrane with relative ease, it could definitely still be in the system, regardless of what subsequent tests report. You’re lucky that you caught it with the Western Blot as it only has about a 40-50% accuracy in positive individuals. Do you know how long you went undetected? If it was a long time, that can dramatically increase the amount of time for which antibiotics are required.
Best of luck to you.
-Eric
Whoa Tom!! I think what knuckledragger (and my previous post) was getting at is that at this point you may be looking at something other than Lyme, but possibly brought on by the exptended treatment (many months on probably very powerful antibiotics). You said yourself that a normall treatment for Lyme if it’s caught late is 8 months, but she’s been on for 1.5 years.
Living on a horse farm about 10 miles from Lyme, Ct., I have contracted Lyme’s disease twice. I also was on antibiotics for 18 months and they screwed up my stomach so much I finally had to stop taking them. It was only then that I started to feel better. The disease never goes away but it can be put into remission for extended periods of time. I am not sure where you live but if you are in CT., there are some excellent doctors who very knowledgeable about Lymes. There is a wealth of info available thru Yale University’s School of Medicene. Good luck!
In my own defense, yes, I have looked into other possibilities,… all kinds of wierd things that docs have thought of… HPV-6 (herpes virus 6), this new one called a stealth virus…Nadda… no positives… I have read a fair amount about all kinds of other possibilities… Chronic Fatigue Syndrome that is often associated with epstein barr (which is the only one that I am not sure I have been tested for)… but I have a lot of other quirky symptoms that aren’t listed anywhere with chronic fatigue or DEPRESSION… I find it sinicly humorous that doctors & the masses believe that a person WHO HAS HAD A PRIOR REAL ILLNESS would continue to make themselves ill with depression… I probably am depressed… but the question I have for people is why is it harder to believe one might be depressed from their CHRONIC ILLNESS, instead of their depression making a CHRONIC ILLNESS… HMM? I have tried prozac… and guess what, it just made me be in a better mood about feeling shitty! I have had the TSH & the Free t3 & t4 and they were all normal. the only one that was high was the thyroid antibodies… it was a anti-thyroid peroxidase test…which is why I asked the question I did, could these antibodies have something to do with ALL of my wacky symptoms… It may still well be Lyme, I’m just trying to field other options before I get a lot more antibiotics dumped into my system… (which is what might end up happening, and if it’s the wrong thing, I won’t be at all happy about it…)
Hey Tiffany this is a subject that I have quite a bit of personal experience with. The positive antibody test would probably mean you have the Hashimoto’s thyroiditis or some other type of thyroid abnormality. As well it could be exclusively contributing to your symptoms, even if your Lyme has been put in remission. I’d like to talk about this more. Have you had any other tests done for things such as rheumatoid arthritis? What type of joint symptoms are you having now?
I am curious about your personal experience with Lyme? to answer your questions, joint symptoms have faded a lot actually, my knees were what initially bothered me the most-and still can… but it’s really only when I do strenuous things, ie. Lifting, running, stairs can be a factor… sometimes the weather aggravates them. They creek when bent no matter what… but it’s not usually painful. They don’t swell, but occasionally they FEEL swollen & stiff. My neck and shoulders get tense a lot… but not like during my bouts of lyme where I couldn’t move my head, more like a stiffness like you get when you sit wrong too long… I had 3 major food allergies, (which are to me a recent development… milk isn’t so new, but corn and yeast as well… ) I used to get tingling … but that seems to have gotten better when I started taking a bit of extra copper. a doc in New York State ran a bunch of odd tests and showed the following abnormalities… low white blood count, high thyroid antibodies, high immune complexes (& I mean high-up to 50 was normal, mine was 87) , high concentrations of the trace mineral molybdenum (almost twice the norm), my blood was more alkaline than normal (which upon much research seems to suggests sluggish metabolism or a weak liver). Other things I noticed in my records were barely normal magnesium concentrations & barely normal copper concentrations. My rheumatoid factor was fine, as was my anti-nuclear antibodies (normally tested for lupus). Other odd things totally unassociated with lyme are things to do with the female me… nothing is at all on schedule any more, and I keep getting this one symptom that I can only find mentioned in menopause literature… and guess what? I’m 25! I have constant muscle tremors in my hands and feet… My chest gets tight off and on (it mainly now seems aggravated when I eat something I am intolerant to-corn is the biggest offender)… anyhow, that’s the lowdown… Please write back, I would like to know what you know etc. Thanks
I feel for you. I can’t imagine going thru all that crap. Hang in there & never give up. Here’s my advise: Try fasting, watch your diet, like big time, natural foods, distilled water, the whole 9 yds. Go natural & look for alternative ways to help your problem. Good luck!
Even if it is thyroditis, I don’t think it could possibly account for the severity of the exhaustion. Although not entirely a shot in the dark, many of your symptoms and labs sound like a heavy metal buildup in the body. A 6-hour post-provocative (DMSA) urine elements test should give you the answer you need. The problem is finding a doctor who will okay such a test. If de does okay it, a company called Doctor’s Data runs the tests and returns the results for about $55. However, a lot of Lyme’s symptoms are like those of heavy metals (but the levels of molybdenum can be elevated with metals), so I’m really mentioning the metals as something you might want to rule out before going on further, heavy doses of harsh antibiotics.
Out of curiousity, if you don’t mind sharing, what sorts of supplements do you take during your antiobiotic treatments?
-Eric
I am curious about your personal experience with Lyme? to answer your questions, joint symptoms have faded a lot actually, my knees were what initially bothered me the most-and still can… but it’s really only when I do strenuous things, ie. Lifting, running, stairs can be a factor… sometimes the weather aggravates them. They creek when bent no matter what… but it’s not usually painful. They don’t swell, but occasionally they FEEL swollen & stiff. My neck and shoulders get tense a lot… but not like during my bouts of lyme where I couldn’t move my head, more like a stiffness like you get when you sit wrong too long… I had 3 major food allergies, (which are to me a recent development… milk isn’t so new, but corn and yeast as well… ) I used to get tingling … but that seems to have gotten better when I started taking a bit of extra copper. a doc in New York State ran a bunch of odd tests and showed the following abnormalities… low white blood count, high thyroid antibodies, high immune complexes (& I mean high-up to 50 was normal, mine was 87) , high concentrations of the trace mineral molybdenum (almost twice the norm), my blood was more alkaline than normal (which upon much research seems to suggests sluggish metabolism or a weak liver). Other things I noticed in my records were barely normal magnesium concentrations & barely normal copper concentrations. My rheumatoid factor was fine, as was my anti-nuclear antibodies (normally tested for lupus). Other odd things totally unassociated with lyme are things to do with the female me… nothing is at all on schedule any more, and I keep getting this one symptom that I can only find mentioned in menopause literature… and guess what? I’m 25! I have constant muscle tremors in my hands and feet… My chest gets tight off and on (it mainly now seems aggravated when I eat something I am intolerant to-corn is the biggest offender)… anyhow, that’s the lowdown… Please write back, I would like to know what you know etc. Thanks
While I was on antibiotics I took LOTS of Milk thistle and acidophillus as well as a multi vitamin, coQ10, efa’s, immune boosting herbs, etc. I took the milk thistle to help my liver clean out the waste products of the antibiotics and the lyme. Although I never had high liver enzymes really… I did end up with a gallstone the size of a dime and had to have my gallbladder out. boy did that suck. The doc in New York ran a profile on heavy metals and mine were a OK. Is the test you speak of different than a profile… Mine was sent out to the Great Smokies Laboratory in Colorado. That was how I knew my Molybdenum was high…
Hey Tiffany. I’ve had some rheumatic problems and have done lots of research on traditional and alternative treatments for these conditions. They are all sort’ve overlapping…including a lot of the stuff for Lyme disease. One of the often overlooked problems you probably have to a certain extent is candida overgrowth due to being on antibiotics for so long. I’d like to discuss some more. Have you ever been to any alternative or conventional practitioners that test for and treat candida? This condition along with food allergies and hypothyroidism are almost a given in anyone with any rheumatic condition…(and your thyroid antibodies test would be considered rheumatic)
Tiffany,
I am convinced that you have exhausted all other possibilities and your affliction is truly Lyme disease. I would suggest that you continue to be strong and cope with this disease. On a side note I too have had chronically low white blood cell counts. This leads to a lot of lung infections and colds. Try eating two cloves of garlic a day. Not only am I a lot healthier but I had tests done that showed a tripled count since the garlic. Hope I could help.
PS Serious drawback is some kicken breath. So I have been taking it before bed to reduce exposure and possibly killing someone.
I don’t think that the metal profile test performed was quite the same as the one performed on me. Mine wouldn’t have come back with numbers for molybdenum as it’s not really a heavy metal like lead or mercury. Was it a hair test? I’ve heard that those are unreliable, but have no way to back that up. The urine-analysis is the only way I know of to be sure that it’s not metals, and 500mg. DMSA was the provocateur.
I’ll second JAS’s statement that it really does seem like Lyme. Best of luck, and don’t give up.
-Eric
Well tommy possibly you should put the whole story out there before you ask for opinions and while you are at it make sure to mention that you do not want any that conflict with your idea of what is going on. That being said I stick with my origional statement and would most likely add that Tom may be enabling the situation further.
tom " I get a little angry at people and doctors who say shit and have no idea what they are talking about" so the idea then I guess is to get opinions from others as long as they AGREE with you? you recomend to your sister to post on the site and then rip the first person that you dissagree with. maybe, just maybe, he was right (I think he was and is correct). I am not speeking for anyone else but how can you say someone has “no idea what they are talking about” maybe he does and maybe others that you may dissagree with do also. why does it HAVE to be some exotic illness? tiffany you brought up “chronic fatigue syndrome” my dad had that my whole life! you know what it is? its working 2 jobs and getting 4 hrs sleep every night!! point is that I think most of these “chronic” illnesses are all in the persons head. you say you have “3 MAJOR food allergies” and that 2 of them are new to you, gee why don’t you REALY THINK about that, and please people I know some people realy do have some “allergies” but they realy just wind up makeing their tummy hurt some or make them spend more time in the bathroom. I find it REAL hard to believe that you ate corn your whole life and all of a sudden its a MAJOR problem. all of a sudden, after the docs can not find any real cause (“I have had the docs run a MILLION tests”) you have MAJOR allergies. your depressed, SNAP OUT OF IT!!! you don’t want to get up for work, NEITHER DO I, you feel tired all the time,SO DO I, all of us get depressed at times, all of us feel like shit sometimes, all of us would LOVE to have some magical “illness” to blame it on, all of us crave attention from our loved ones. DON’T BE “HAPPY” IN YOUR SELF PITTY OR IN YOUR “PAIN”!!! make a decision to change how you feel and your outlook and it will change. I’m sure you did have lymes and you probably still have some effects from it but I am also sure that other things have gone on in your life since then (could be as simple as likeing the attention or it could be a break up or you not knowing “why am I here?” or a million things) and if you think about it I am confident you can find a connection. good luck and please understand NONE of this was a rip, it is just that some of the people that respond may know what they are talking about. peace. hetyey225