i really hope i don't have lyme, because if so it sounds like i'm going to feel like total crab for a really long time! i'm so sorry that after all these years you're still feeling so horrible :( i can't imagine trying to do everything you're doing... you sound like super woman! it ***** that your husband doesn't understand. my husband is super understanding, but everyone who doesn't know me automatically judges me when they find out i don't work anymore. i'm sure lots of people think i'm just lazy. it's embarrassing when they ask me "what i do" because i can't do much of anything anymore... i never know how to respond to that question! i really want a diagnosis so i at least can tell them WHY all i can really do right now is sit around the house! i have been reading up on lyme NON-STOP over the past week... i had no idea it was such a controversy until then... how frustrating! i don't understand why doctors insists on staying so ignorant! i really don't like doctors... it seems like i always leave my appointments in tears... so many of them have made me cry. for a while i decided to just give up and accept it, but i am not happy feeling like this for the rest of my life! let me ask you this... is it normal with lyme to feel like you are going to die for a few days... and then be better for a few days... and then bad again? i can't find any rhyme or reason to my symptoms! i try to make the most of my better days, but the bad days are unbearable. i will be sure to talk to the llmd about co-infections. this is such a complicated medical problem! i tried to call the LLMD i found, but his office is closed until tomorrow, so i'll try again then!
Sorry, its been 7.5 years since being diagnosed with lyme! How time flies though NOT having fun with lyme! Trying to look on the upside of things though - a daily struggle!
Glad u dont have a tumor! I had hyperthyroidism - that and the lyme emerged post pregnancy which I heard from my OB is common (for autoimmune issues to come out with pregnancy) I cant speak to pituitary issues - that's beyond my current knowledge.
I forgot to mention to also make sure you get tested for co-infections. I had a lumbar pucture for what nuerologists thought was MS, coming up negative for MS and positive for lyme (my right hand became paralyzed, in addition I was slurring, and had problems walking). When I finally got to a LLMD, I found out that I not only had lyme, but the co-infections of babiosis, erlichosis, and bartonella and was subsequently treated for all of those with antibiotics. Now 5 years later, I STILL have extreme fatigue, lyme fog (including confusion, word finding probs, short term memory loss - all while trying to get a doctorate in psychology while also being or trying to be a "normal" mom and a wife- not too easy). I'm with JackieCalifornia, so glad you have a husband who is supportive! Priceless! Mine thinks I'm the laziest person in the world which is so hurtful I cant begin to talk about it with tears not coming to my eyes. It seems as if you are pretty intelligent, as most would not know or even think to seek out a llmd with the mention of lyme disease...the American Medical Association (AMA) has made statements about how lyme is largely psychological and not worth much diagnostic speculation. the Ilads website talks a lot about this struggle. However, since the govt is now seeing the light with the problems that the Iraq war and sensitivities brought back with soldiers, I am hopefully that this will change, and lyme will be seen in the light that it truly is, a dangerous virus that can affect all aspects of one's body and everyone it affects is unique...when insurance comes around is when we all will be victorious...Good luck tomorrow making an appt. and you might ask if they can recommend anybody for tx until your appt. time (maybe a massage person or acupuncturist who understands lyme, etc.) Let us know how you make out!
thanks for the advice! i will check out that site :) i know i have a low thyroid, but my doctors insist on keeping me on the low end of the normal range with meds even though i think i would feel better on the higher end of the spectrum! i also definitely have a low pituitary and every doctor i've seen is completely baffled by it. apparently when your thyroid is low your pituitary is high, but not in my case... instead both are low test after test! the most common cause for this is a pituitary tumor... i had an MRI done on my brain a year ago and it came back normal, and since there was no tumor doctors completely dismissed the issue. the LLMD i am seeing seems to know A LOT about hormones based on what i've readon his website , so i'm really hopeful that he can help whether i have lyme or something else!
Glad you found a LLMD - I agree with everyone, your symptons sound very much like lyme - in fact, with the mood based ones, its sounds like nuero lyme.
the internist will probably ask you if you saw a bullseye, but a minority of ppl see a bulls eye.You might ask for a western inkblot test, but as others have said, they have a bunch of false positives and vice versa and then a non llmd would not know what to do. I would get my thyroid checked, my yeast checked, and maybe a white blood cell count? you might try looking on some sites that have more information in their archives, like iLADS -- international lyme disease society - thats prob where I'd start, in fact, check out this site in particular which describes the differences between a regular doctor working with lyme and a lyme literate one http://findarticles.com/p/articles/mi_m0ISW/is_286/ai_n19170415/ - cant vouch for the accuracy, but it seems to be on point! GOOD LUCK!
thank you everyone! i found an LLMD in columbia, missouri and he seems very knowledgeable! i tried to make an appointment, but his office is closed until monday. i'm expecting a long wait since there's so few LLMDs out there! i have an appointment with a new internal medicine doctor on the 23rd, and i am going to ask he tests me for lyme just for the heck of it, since he's covered on my insurance. which specific tests should i ask for? i realize he might not take me seriously, or that the tests might be inaccurate, but it's worth a try... and then i'd have a little more info to show the LLMD when i can finally get in!
PS to send a private message, hover your mouse over my name above (JackieCalifornia) and click on 'Send Message.' This website is not all that easy to navigate in some ways, esp when you're ill and have a fog-bound brain. Been there.
There is a renowned LLMD in Springfield MO, if you are on that side of Kansas. Will send you a private message through this website if you want the name. I haven't consulted him, but he gets good buzz.
I too would suggest you see an LLMD, because as noted above, regular MDs are too often not tuned into Lyme. LLMD by the way is not an official designation, but is instead shorthand for MDs who take a broader view of Lyme and its co-infections.
And speaking of co-infections, your LLMD should also order tests for other diseases that the Lyme ticks often carry, including bartonella, babesiosis, ehrlichiosis, and some others. --- Note that I'm not an MD or medically trained ... what I say here is simply from my own experience with Lyme and coinfections.
Your symptoms sound VERY much like mine were -- I simply could not function, and went through about 20 MDs before someone said "Maybe it's Lyme, but I don't think so." That sent me hunting for an LLMD, and I was then promptly diagnosed with Lyme and Babesiosis. I began to get well as soon as I was on antibiotics, although out of fear of becoming more dysfunctional ON the meds than I was without them.
I was wrong. I began to get better quite quickly once on the antibiotics. Last year, I got bit by another tick, and this time have Lyme and a different co-infection, with totally different symptoms -- and they are not nearly as bad as Babesiosis. The different combinations of diseases mix up the symptoms, and I suspect different people get different symptoms even from the same disease, based on what I have read on this site over the past few years. That is why you really need an LLMD, because not only is the medical profession largely clueless about Lyme+, but the diagnosis is not simple because of the coinfections.
Take heart, find yourself an LLMD, regardless of cost and difficulty of finding one -- what could be more expensive than the pain and misery and loss of everyday health that you have already experienced?
And tell your husband he has a fan here, that you have him to rely on through such bad times, which are hard on both of you, I know.
Let us know how you do. And let me know if you want that LLMD's name.
Lyme symptoms? yes, all of 'em absolutely could be.
If so, it would have infected your central nervous system and maybe ANS.
Find yourself a lyme-literate Md for evaluation.
the lyme tests are deplorably unreliable and cannot be used to rule out the disease.
Go get a test done today!!! You have several symptoms.