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Old 02-16-2007, 07:18 PM   #1
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Unhappy Possible Lyme Disease diagnosis?

OK so here's how it all started. In August 2006 I came down with symptoms of headache, fast heart rate, and increased thirst sensations. This was about a week and a half after I had gone camping, and ironically the day before I took the MCAT, which is the acceptance test used by medical schools. I thought it was some sort of viral thing, so I didn't go to the doctor...thought it would run its course then I'd be better.

Well, weeks passed and I never got better. Still had the headache, fast heartrate, very severe thirst...in addition I developed symptoms such as nausea, abdominal pain, overall muscle tiredness/weakness, and just general just felt bad. Felt like I couldn't think clear anymore as well, and I was also VERY emotional (like would cry every day for no reason...before this I can think of only a few times I've EVER cried).

Finally went to the ER one day because I wasn't getting anywhere with my family practitioner, and they "diagnosed" me with diabetes insipidus, and sent me home with a prescription of desmopressin (DDVAP) with NO warnings of its side effects. The next day I was back in the ER with basically "water intoxication", my levels of sodium and potassium were dangerously low because I had taken the desmopressin and continued drinking water.

Well, when that was over I was referred to see a nephrologist. Had an appointment with him, and he turned out to be absolutely the most offensive person I had ever met in my life. He took one look at me (I'm about 5'6, 110lbs, pretty 'thin' but not overly thin to where it affects my health) and diagnosed me with "psychogenic polydipsia." Well, I went to a new nephrologist and this one actually did blood work, but he found nothing wrong and told me that whatever was wrong with me didn't relate to any kidney disfunction.

After the visits with the nephrologist I began a new series of symptoms, in addition to all the other ones I was experiencing. These new symptoms include very severe muscle pain/weakness, severe joint pain in my knees, feet , (and more recently my hand), black out for a second every time I stand up, gums slightly swollen, feeling of being absolutely exhausted all the time, twitching muscles, heart palpitations (becoming more frequent), and a further decline in my mental abilities-feels like I'm in a "mental fog" or something like that. Also developed an ear infection with fluid in middle ear, (havn't had one of those since i was like 5)-treated with antiobiotics, but lasted about a month. Also if I try to exercise even a little bit (like 10 min of fast walking) , my muscles are sooo incredibly sore for days afterwards. I used to run 2 miles with no soreness at all.

So, after that my family practitioner referred me to an endocrinologist. He ran all sorts of tests (I think they took a total of probably a pint of blood for all the tests..all through those little vacuum sealed tubes...anyways it hurt REALLY bad when they took the blood!) They tested for thyroid function, adrenal gland function, b12 deficiency...everything you can think of. And the results came up absolutely normal for everything. The only thing that was abnormal was an EKG that they did. The EKG showed sinus tachycardia

After everything from the endo came back normal, my fam practitioner sent me to a cardiologist and a rheumatologist. He also "diganosed" me with fibromyalgia.
The cardiologist did all sorts of tests including an exercise stress tests, and looking at my heart during all of this...and came to the diagnosis of "inappropriate sinus tachycardia" which basically means my heart beats way to fast all the time (usually around 120bpm) and they dont know what's causing it.

The rheumatologist did an ultrasound of my knees and ordered a few blood tests to rule out whatever weird forms of early onset arthritis there are (I'm 21 years old...shouldn't be having any joint problems this young). He also suggested the possibility of lyme disease, based on my joint/muscle pain, along with all of my other symptoms, and the fact that I was camping 1-2 weeks before these symptoms began.

Now I live in Texas, where Lyme disease isn't as common, but looking at the statistics its been increasing pretty significantly over the past few years.
The Rheumatologist said that next time I'm in if the tests he ran came back negative (which they probably will), then he will start testing for Lyme Disease.


Other relative information-at the time when the symptoms started I was on a low dose of minocycline for acne, but stopped about a month after symptoms began because doctors attributed the diabetes insipidus to the minocycline. Symptoms did get better for a couple of weeks after I stopped the minocycline, but then the symptoms started getting worse again.
Also, the day before the symptoms started I started taking a low dose of zithromax for a sinus infection, took the zithromax for about 5 days.
Questions that I had were would the combination of these 2 low dose antibiotics been enough to treat lyme disease (if that's what I have?) It seems like from other posts that if you catch it early you still have to treat it with pretty high doses of antibiotics. If that is the case, then the low doses I was taking would have not been effective.

Honestly I hope I am diagnosed with Lyme Disease. The past few months have been pretty much a downward spiral in terms of my health (and my life in general), and Lyme Disease would account for all of my symptoms, and provide me with SUCH a sense of relief with knowing what is wrong with me. It would also explain why all the blood tests have come back normal so far. It's been very frustrating over the past few months not having an answer for why I feel so crappy all the time. Before all of this stuff happened I was on my way to becoming a competative medical school applicant to ANY medical school in the country....now I'm not even applying to any of the top medical schools...just the med schools in texas. I also had to step down from being the Head Director of one of the largest and most complex student run organizations in the country (Texas A&M's Fish Camp)...an incredibly hard decision, but my health prevented me from being able to be in a situation that high stress and demanding. Just recently I had to drop one of my classes and drop down to being a part time student at A&M. Hopefully it won't get any worse than this.....


So, if you're still reading this incredibly long life story (well...last 6 months story lol) I guess do you have any suggestions...or things I should ask my rheumatologist about? He seems pretty knowlegable about lyme disease and the difficulties associated with the lab tests. Any advice on things I can do (supplements i can take) to help with the symptoms until I see the doctor again?
Any advice is greatly appreciated! Thanks!

Last edited by airheadtwirler0; 02-16-2007 at 07:42 PM. Reason: .

 
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Old 02-17-2007, 04:44 AM   #2
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Re: Possible Lyme Disease diagnosis?

hi airheadtwirler

I also had alot of these symptons after being bitten by a tick almost a year and a half ago Took the doctors almost a year to diagnose and start antibiotics Took the dioxicycline for 4 moths 300 mg a day at first then after having a cva started on the IV therapy Suggest to your doctor to get a western blot test from Igenexs in Ca There is no absolutly reliable test for lyme mostly treated by your symptons which sound familiar The elisa test they normally run standard is very unreliable My elisa came back negative would not even known about Igenexs except for my pharmacist so went back to the doctor and bingo there it was positive almost all over the board Had the real bad brain fog and am still plagued with the ear pain and brain fog feeeling like you ran a marathon and all I have done is try to clean my house Extreme muscle aches after doing anything Itching bad sometimes with the pain Have not been able to work in two months but after IV antibiotics have been slowly improving
Lots of headaches crying sucks because you just can't control it I am not usually a big cry baby either Also have them test for co infection Babesia and may others I have the Babesia Good luck and check the board Lots of good support

Last edited by moderator2; 02-17-2007 at 10:21 AM. Reason: huge quote was totally unnecessary

 
Old 02-17-2007, 07:35 AM   #3
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Re: Possible Lyme Disease diagnosis?

Hi Airhead welcome to the board! Sorry to hear you are having problems...

Lyme is ALL over the world now...It is the 2nd fastest spreading disease...spreadable many ways....So just because you live in Texas doesn't mean you can't have Lyme...

Igenex is the best lab for testing Lyme. I just would like to throw in that even if your test comes back negative from them...Doesn't mean you don't have lyme. I knew when I was bitten and when i got sick...after about 10 years or so into it all and being negative over and over from other labs my blood was sent to Igenex...still negative...I have read that it is best to do a tissue biopsy if one has had symptoms for many years...sometimes it is in the bone and tissue and not in the blood...

I would d*****atley find a LYME LITERATE DOCTOR in your area....if you post a new thread ask where there is one..and I wouldn't waste any time getting there....

Good Luck to you!!!


 
Old 02-17-2007, 10:13 AM   #4
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Re: Possible Lyme Disease diagnosis?

Hi New member,

I've been following this board for some time and want to tell you that this is a good place to be to get some answers to questions about Lyme Disease and also that people like jojo and many others are very helpful and encouraging. I wish you the best of luck and know you'll be added to the prayers of lots of us here.

Teedee

Last edited by TeeDee; 02-17-2007 at 10:16 AM. Reason: grammatical error

 
Old 04-02-2008, 10:53 AM   #5
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chris0007 HB Userchris0007 HB User
Re: Possible Lyme Disease diagnosis?

Airhead,

Thanks for the descriptive background! I find there isn't enough of that done on this website for us to make the best possible comparisons to each other.

Your symptoms/story are almost exactly like mine, except I never went camping. I have been through the ringer with doctors, especially the ones that think its "all in my head." I've had doctors so bad and I wanted to get my life back in order so much that I have paid for many blood tests on my own to rule out certain things. I just finished up my final rounds with a hematologist and an endocronologist. There is a chance I have diabetes insipidus, which I'm looking into, but I have doubts it could be causing me all these issues. My PCP is now telling me I have low Vitamin D, but the endo ran the same blood test 3 days after the PCP and it showed that I'm fine. A testiment to the fine lab work that I'm sure is full of errors. Think about it like this with doctors and labs: In all the jobs you ever had, wasn't there people who did there jobs well and people who did their jobs poorly? It's no different with labs and doctors. If anything, I always recall at all of my jobs, the people who typically did their jobs poorly usually outnumbered the people who did their jobs well....significantly. But hey, that's just the system we all have to endure.

My next stop on this "tour of destruction" is a lyme doctor and an infectious disease doctor. Hang in there and don't let anyone tell you that its all in your head. As my father says, "NO ONE knows you better than YOU." In a strange twist of role reversal, its my father who's been supporting me and my mother who keeps giving me the impression that I'm going crazy.


Like I said, I have ALL the same issues and have been given plenty of bad medical opinions to what is wrong with me. When I find my diagnosis, I'll be sure to share it here so that you might have a way to go. In the meantime, get checked for lyme but also look into these issues:

1) Hemochromotosis - Iron Overload. This can cause a malfunctioning pituitary gland which can mess with any and every thing. Just know that this usually effects men between 30 -50 and usually women after 50.

2) Hughes syndrome - Sticky Blood syndrome. Usually you would have had a blood clot or two, but it can cause all these symptoms as well. I know of 2 people who never had a blot clot, had all these symptoms and had this disease.

3)Go back through you Endo tests and look them over VERY carefully. Labs today use ranges that are not accurate. If you see any high or low values that are within range, be sure to do an internet search on that test and get more info. One thing Endos are notorious for is not running all the tests for Thyroid (Free T3, Free T4, FTI, T3, T4, TSH and antibodies for hypo and hyperthyroidism) If you visit the thyroid board on this site, there is a group of very knowledgeable women there that can tell you that you can have a "normal" thyroid range and still need treatment.

 
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