Wannabewell - I moved your post here. Members, Let's all say Hi!!

Hi Wannabe!

Welcome to the forum. I am so sorry you have suffered for the last year with so little help.

Please do get yourself to an LLMD. You will be surprised at what a relief just having someone acknowledge your symptoms and hand you a diagnosis can be! Getting the right course of treatment is critical in the treatment of Lyme. The Lyme doctor will be sure to rule out other causes, so don't worry about being funneled wrongly into a Lyme diagnosis.

Don't except a diagnosis that is really a symptom -- like fibromyalgia.

Take care and keep us posted on your progress.

Hi Wannabewell!
Welcome to the forum!! Your name could apply to all of us!! I'm sorry I moved your post and then ducked out - We roll up the sidewalks here where I am @ Noon every Saturday, so I had to get into to town to buy some feed first!

I am so sorry that you have had to go this long without proper treatment! You will need to consider that you have a chronic infection by this time. You said you tested positive with one band? Do you happen to know which band? If it's one of the bands specific to Lyme, then you have your answer as to whether or not you have Lyme.

I am also sorry that it has affected you the way it has, with you being a personal trainer and all! We do have some marathoners here that have or are making their way through treatment!

I'm sorry, but I needed to go into your post and modify the Doc's name. We don't post the names of Doc's here - unless they are already highly public already - because they get harassed pretty bad and some have lost their license for prescribing high dose abx for extended time like we need. We get protective of our Docs! In order to discuss a Doc using their full name, you will need to do that in personal emails.

With that being said, I have looked into this doc (trying to gather names of LLMD's for referals - not for myself to use) and have seen some good reviews that other patients have left in comment sections. I also saw that she has had Lyme herself.

I would suggest, in order to get her name out where members can see it, that you start a new thread asking members here. I would suggest that you use a title similar to this - "Feedback on Dr.M in Plattsburgh, NY?"

With the symptoms that you have described, I would say -YEP! sounds all too familiar!! And we can understand what you are going through all too well also! Hang in there!

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

The second post in the "New to Lyme?" thread is all about detoxing, which we all really need, but especially when one has a tick-borne infection. Here is a link to an article that explains why it's so important for those with TBI's (tick-borne infections) to detox: findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/?tag=content;col1

Hang in there! We are here to help answer some questions, direct you to information and we have a pretty big shoulder to lean on from time to time!



about

Ahh, the 'generic' one! Band 41 indicates the tail of a spirochete, but there are a few spirochetal infections. Although combined with your symptoms, I would say that you most definitely should be evaluated and at least have an abx challenge done.

Band 41 was the only band that would show up on my tests after about 3 months of abx - but I had been infected for decades by then. It took a full year of abx for more bands to show on my Western Blots - but that was me. From what I have seen on this forum over the years, that's not typical. Some member have had over-whelming positive tests after an abx challenge, so we are all different!

That's the thing about this set of infections - there is no one-size-fits-most treatment, each person's treatment will be as unique as they are. There will be similarities of course, as we are dealing with the same bacteria and the same abx are given - for those using that route.

Best of luck in finding a good LLMD to evaluate you!

Since we posted at the same time, did you see my post above? It explains about band 41. Of course if you have more questions, ask away!! We don't have all of the answers here, but we can usually direct you to where you can find the answers!


Oops! Spelling errors! Again.....

Hi Wannabewell!

I definitely agree that seeing a LLMD is so important...Years ago I saw an AMAZING LLMD and was diagnosed with Lyme after years of no answers. Insurance denied me IV antibiotic coverage (my digestive system was such a mess at the time that the oral antibiotics might as well have been sugar pills). Insurance company made me get a 2nd opinion with an infectious disease specialist who vetoed the Lyme diagnosis, and I spent years trying to treat fibromyalgia and chronic fatigue syndrome. Then I saw a highly recommended reumotologist who said Lyme wasnt even a possibility, it was just fibromyalgia and the million symptoms that dont fit in are just extraneous flukes. Over 10 years of my life wasted until I finally returned to the beginning, the Lyme diagnosis I was given by the president of the ILADS.

Any other doctor is trained (although I'd say brainwashed) into seeing things differently. They won't believe in chronic cases of Lyme because they're trained not to. They're trained to prescribe antidepressants for fibromyalgia instead, even when patients report severe allergies to them (personal experience). They're trained to tell patients that they have trouble sleeping because the fibromyalgia pain keeps them up at night; they're trained to ignore patients when they say no, that's not the case. And they're trained to make excuses for why your positive western blot must be a false positive.

If you do have Lyme, the only way to truly find out is to treat it with the help of a knowledgable doctor, and see if it works (unfortunately it is all trial and error). I'm sorry you're going through this and I wish you all the best. I just cannot caution enough that it is vitally important to find good doctor!!