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Lyme Diagnosis


Dizzy Dame
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Hi All,

Right now I'm down in North Carolina and I just saw the lyme disease specialist this morning. The doctor was one of the most caring and compassionate physicians I've met, and spent several hours with me going over my medical history and symptoms. He also did a very thorough physical examination.

At the end of the appointment, he told me that he's pretty sure I have lyme disease, with a likely co-infection. However, because my bloodwork has been indeterminate (I had a quasi-positive lyme test, but it wasn't a full positive), he said the diagnosis can't be firm until we do some more tests and see how I do on antibiotics.

Despite the fact that lyme disease is not a pretty diagnosis, I feel very relieved that I FINALLY have an answer to what's going on with me, and, with a lot of luck, I may completely recover from this horrible illness. However, I feel it's too soon to throw a party...I've got to see how I do on antibiotics first.

I just wanted to give an update, since I know many here are or have been diagnosed with lyme disease. I know it's a controversial issue, but I truly feel my diagnosis is the right one.

I'd also reccomend that anyone who may have been bitten by a tick, and doesn't have any known cause for their POTS be checked for lyme disease. Lyme disease can cause POTS, so it's a good thing to rule out, ya know?

So that's what's happening. Of course, I'll update everyone as I begin antibiotic treatment, and I'd be happy to answer any questions (if I can answer them).

I also wanted to thank all the wonderful members on this forum who mentioned lyme over the past few months. If it wasn't for those posts I wouldn't have begun to research lyme disease, and probablly wouldn't have ever made it down to NC for the diagnosis. This forum has been so important since day one, and I can't even begin to say how much it's meant to me, and continues to mean to me.

Lauren

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hi lauren,

thanks for updating us! I so hope this will be the answer to all your trouble! I'm keeping my fingers crossed for you that you can have your party some day!

Like you, i stepped into the lymepath and heard a very optimistic story from the lady who did the bloodwork. her aunt, who wasn't supposed to be bitten by a tick, got very ill, years ago when we didn't know we had ticks in the netherlands. she found out that lyme could be a possibility and kept on pushing doctors and finally (she now was in a wheelchair and didn't believe she would ever come out again) she was tested and surprise, surprise: it was lyme. they immediately started treatment and she started to get better. she now has her own beautiful life again.

although the lymepath is closed for me (they didn't find any signs of lyme in my blood and as no one in my family could remember that i could have been bitten by a tick, i closed this book) it made me feel very optimistic and hopeful for others who are walking this track (or should i say wheeling :) ?).

Good luck lauren, i keep keeping my fingers crossed for you!!!

corina :)

oh, and what i forgot to say is, that i share your thoughts about this forum. i am sure that i wouldn't be half this happy with my current life if i didn't have all you to share our problems AND our understanding!!!

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Hi Lauren,

That's great that you found a doctor willing to spend time on your case and who sounds like he can help you :( While it's not great to have lyme, the way I look at it - if you have it you definitely want to know - and be able to treat it. Please keep us posted on how you do with the antibiotics. What do they have you starting off with?

Glad to hear you are making progress in getting some answers! Thanks for updating us :)

Pam

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Thanks Corina and Pam :)

Corina, I'm sorry to hear the lyme diagnosis didn't work out for you, but hopefully you can eventually get to the bottom of your POTS.

Pam, right now we're doing more diagnostic work before I begin treatments. We're checking hormone levels and doing an MRI of my brain to see if my brain, especially my pituitary gland is involved. If either are involved, I'll start IV treatment when I return to NC in November. In the meantime, I've started taking special suppliments and vitamins to get my immune system ready for treatment. It's interesting, many of the vitamins I'm taking are also used to treat mitochondrial disease. I guess those vitamins are good for those with other conditions as well.

Thanks again for your thoughts and concern.

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lauren -

i'm so glad that you had such a good thorough visit with the new doctor. i hope the diagnosis leads you down a treatment path that brings you better & better days ahead.

:) melissa

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my liver enzymes are doing better but otherwise things aren't too grand. no hospital stays but there seems to always be something else going on to complicate things...thanks for asking though. i've been thinking about posting an update anyway so maybe i'll now be prompted to do so; i don't want to entirely take over your thread.

B) melissa

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Hi Lauren, That doctor sounds much better than the last one you saw for lyme ;) Glad to hear he is taking the time to figure out the whole picture and treat based on that.

Just curious what vitamins you are taking for supporting the immune system? Did the lyme doctor recommend them? I am definitely in need of any support I can get!

Thanks!

Pam

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Hi Pam,

Thanks for the support! And yes, I'm much happier with this lyme doc. After talking with him in the appointment, and researching his academic articles online, I feel confident that he'll be responsible and prudent when treating my lyme infection.

The doctor did prescribe a whole slew of vitamins and suppliments, which are supposed to get my immune system ready for the arduous task of killing the lyme bacteria next month. Here's a list of what he put me on, and how each is supposed to help. I take one pill of each per day:

Vitamin B Complex: Assist the metabolism of carbohydrates, protein and fat. They also may improve cognitive function and lessen symptoms of neuropathy.

Probiotics: Naturally occuring bacteria in the gastrointestinal tract. Long-term use of antibiotics can affect the levels of these bacteria in the GI tract. Taking probiotics will help replenish the lost bacteria.

Coenzyme Q10: A powerful antioxidant that functions as an essential cofactor in the mitochondria electron transport chain and in cellular energy production. It is essential for healthy heart and nerve function and may reduce fatigue and stimulate nerve function.

Omega 3's: Fatty acids found in cold water fish. Used to improve cholesterol ratious and can act as anti-inflammatory agents. They are also known to have immune-stimulating properties.

Quercetin: Improves effectiveness of antibiotics, stimulates immune function, and has some anti-inflammitory and anti-histamine properties.

Alpha Lipolic Acid: May increase cellular glutathione leves. Used to prevent and treat neuropathy and augments antibody response.

Of course, you should talk to your doc before taking any suppliments...especially given how sensitive us POTSsies are to new chemicals ;)

-Lauren

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Lauren.. I'm glad that you have finally gotten some answers!! I really hope that once you begin and finish your treatment for lyme that you will start feeling better..

its great that you came across a kind and compassionate doctor that makes all the difference in the world!!

I have a lyme related question for you...last month i had lab work done to check for the lyme antibody/titer blood test.. it came out negative.. question being can you still have lyme and have that test be neg? I'm just wondering ..

again i'm glad that you found out what is going on aside from pots.. sorry that you have lyme.. but am hopeful that they can treat you and that you might start feeling better!!

HUGS

dizz

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Hey Linda ;) It's good to see you on the forum...so many of us have been in POTS holes lately.

The answer is a definite "yes" when it comes to testing negative for Lyme but still having it. From my reading, it's pretty much universally acknowledged (even by the CDC) that a negative lyme test does not exclude lyme disease, and that a diagnosis of lyme disease must usually be a clinical one. From my understanding there are two widely accepted interpretations for how to diagnose lyme, each is similar to the other, but they have their differences:

1. The CDC interpretation:

"Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migraines, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migraines"....Article continues

You can read more of this article here:

http://www.cdc.gov/ncidod/dvbid/lyme/ld_hu...e_diagnosis.htm

2. The International Lyme Disease and Associated Diseases Society (ILDAS):

"The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity"...Article continues

You can read the rest of this article here:

http://www.ilads.org/basic.html

...of course, lyme disease research and treatment is a very murky area of medicine right now, and as such is rife with contradictory literature, quackish doctors, and ridiculous treatment recommendations. Just from personal experience, I'd recommend anyone who thinks they may be infected and wants to peruse a lyme diagnosis be very careful when choosing a physician to diagnose. The same should be said when doing research online: there are literally hundreds of bogus articles out there which make rediculous assertions (some of these even say lyme is an STD and that lyme is fatal)

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Lauren, just wanted to add that my smell and taste doctor prescribed a high dose of Alpha Lipoic Acid (ALA) for a year to treat the neuropathy that impairs my olfactory nerve. He also suggested that adding E and Omega 3's couldn't hurt to add to the mix. Currently, I'm just on the ALA, mostly because I have a hard enough time keeping up with taking all my meds in the am. Without vitamins, I have 6 rx's I have to take in the morning, and another 6 rx's at night (only one of these is in the AM mix). I also have several otc items at night, including 50mg of benedryl... and if I'm on any short term meds, like antibiotics, pain meds or steroids, ...

I can't fit my daily meds into my medication boxes. I've taken to using shot glasses lined up on my counter for the week with the AM pills in the front row, and pm pills in the back row. Teri helps me get them together b/c I sometimes forget to get everything ready each week, and then end up missing meds b/c my glasses aren't next to where I prepare my food.

Hope this helps someone. Nina

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Nina, thanks for posting about the shot glasses! My meds now no longer fit into the pill box and I've been worried I'll foget to take some of them. I'll start using the shot glases for my Mid-day meds (since those are the most bulky as that's when I take all my suppliments).

Thanks again ;)

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Lauren,

Thank you for the update! I was so anxious to hear how the appt. went.

It sounds like you FINALLY got a true, thorough look at whether or not you have Lyme and ruled out alternative diagnoses. I, too, had a 3 hour appt. with my Lyme doctor on the first visit.

I really appreciate all of the other information that you posted...you are much more well-read on Lyme than I am, as I can't do any reading these days. Soooo, frustrating. So the bits and pieces I get are from other 'lymies' on this site and friends with Lyme.

Anyways, did he recommend a particular brand of probiotics for you? I find the market overwhelming b/c they are all so different in how much bacteria they deliver, etc.

I am currently using the Natren Healthy Start Pack (Dairy-free) (it's three HUGE pills!).

I also take B12, but not the other supplements he recommended. I will be interested to hear how you do with them and if you notice a difference. I am intrigued by them all...

Sounds like you have a plan in motion...YEAH!!!!

Love, Em

P.S. Lauren you are so right about this forum guiding us through the Lyme as a possible diagnosis...I would not have pursued it or pursued it correctly without the help of others on this site. I do realize how controversial it is...but I also know that after eight years my doctors were saying, 'there's nothing left'. I think you are so fortunate to have found this forum early in your illness so you can really get to the Lyme treatment ASAP. I wish it hadn't taken 8 years for me to find out that's what may be going on.

Dizzygirl!!!!! You have been so very quiet. I think I may have surpassed you in top 10 posters, and that's saying something b/c I'm not online much either these days!! I miss you! BTW, I totally echo what Lauren said, the screening tests you get done at the doctor's office are pretty useless, especially if you have chronic Lyme. Most traditional infectious disease doctor's don't believe in chronic Lyme. You really have to go to an LLMD. Luckily, you're in the right part of the country to get to one, if you want to go.

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It's good to hear from you Emily! I've been a little worried about how you're doing since your doctors appointment (we had lyme appoitments on the same day right?)

I am very glad I got this diagnosis "quickly" although I've technically been sick for 6 years...I've only been super-sick for 1 year and 3 months. The doctor in NC estimated that my lyme was semi-latent in my body for many years, and finally a stress last summer was the straw that broke my immune system's back.

Anyway, the probiotics he reccomended are "Jarro-Dophilus EPS" by "Naturally Healthy Trinity". You can order them from this number: 800-366-6056. Mine haven't come in the mail yet, so I'm not sure about how much bacteria each pill contains, but when they come in I'll let you know. ;)

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Hi Lauren, Thanks for the information on the supplements :) I'm actually already taking a few of those, so at least I know I've been doing the right things. How much quercetin and CoQ 10 did your doc tell you to take?

For probiotics my doctor recommended Theralac. It's expensive but, in my opinion, worth every penny. I was starting to have yeast problems after about 6 months on antibiotics and this stuff really helped get it under control. I think the only place to get it is from their web site - http://www.theralac.com/.

It looks like Jarro-Dophilus is also available on immunesupport.com - https://www.immunesupport.com/shop/product....uct__code/N0213. I'll have to try some of that next time (I often will take 2 types and alternate) especially since it's more affordable ;)

Good idea about the shot glasses Nina :)

Pam

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I'm glad for you Lauren-----It will be nice to get a handle on those disabling symptoms you have been having. Nothing better then a nice compassionate physician to lighten the terrible load we carry with all these weird symptoms that so few people or medical professionals understand.

I know how it is to have a diagnosis that other "traditional Docs" don't understand---and will not understand.

It's nice to see those brave Doctors who have the guts to look outside the box---looking deeper to improve the quality of life for those who suffer from lyme---and other disorders/diseases that other docs aren't willing to investigate.

Good luck with your treatments----------- :)

Maxine :0)

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Hi Lauren

apologies for not keeping up with the posts, neuro lymie here :) (confirmed with two positive western blots from 2 separate labs). and having a really hard time reading, especially from the computer.

I am happy for you that you found a compassionate doctor. It makes all the difference.

Ariella (currently tripping on antibiotics)

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Thanks Maxine and Ariella :)

I definitely appreciate my lyme doctor. While I've met other caring doctors along the way, none have really been able to give me an answer as to why I fell so ill so quickly, and why I was having other neurological symptoms that couldn't be explained by POTS alone.

I hope that all the members on this forum who don't have answers can find them, and that we all find good doctors who really listen to what our bodies are telling them.

Hugs,

Lauren

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