Anyone still have doubts LYME their real problem?

I feel the same way:)

Victoria

After living with tick born infections as a constant in my life for the last 15 years, I have managed to cycle through those feelings several times. I really have no doubt that I had/have chronic infections, but I also know that I carry at least 1 virus that have not yet been eradicated from my body. I keep "getting lost" as to what is causing what, as so many of the symptoms are the same for both EBV & Lyme & company - not to mention any symptoms from Hashi's, or any other condition that I now have.

This is one of the many reasons I am soooo very grateful to have finally found a good acu doc. I saw a good one back in '04 out in Calif. (Hubby & I were out there for Hubby's work) & felt better than I had even in my teenage years, but the job ended & we had to move back home.

What I am hoping is that with the help of acupuncture, Traditional Chinese Medicine, & herbs/homeo, I can get all systems back up & running - and then, maybe I can make the trip to get tested & evaluated by a LLMD.

Like you Springsjean, I sure don't feel like starting with a new doc!!!
So, yea... I have LOTS of doubts.

Springjeans,

Well, for starters, the word on the street about my LLMD who is an ID Dr, is that his patients get well. So I feel very confident that I will. And if it takes abx, so be it. I can conceive of some time in the future where I might digress from this, but not at this point. Lyme's a freaking bacteria and I'm believing that augmentin will zap it! (you got me on a good day here, normally I'm much more negative....)

Admittedly, this is not appropriate for every sufferer.

As for your Lyme and your immune system, etc, ALL of that is, so far, unclear. NO ONE has these answers firm yet. Yes, I do believe that some people have genetic predispositions that somehow compromise their immune system in certain ways. I believe that is obvious.

It is possible that those who have chronic infections have an immune system already compromised in some way, and it is also evident that Lyme compromises the immune system. The jury is still out on which caused which, but I believe the sensibile opinion is that it's different for everybody.

Still, I wonder if there is any real documentation of someone who positively had Lyme (like the bull's eye, etc) whose immune system alone was able to conquer it? Entirely possible, I believe, but we just don't know about it. THEY aren't the ones going to the Drs or blogging, or having papers published about them.

I was not stressed at the time I contracted Lyme (my tick bite is known). However, I was about stressed to the max within a month of being bitten and it only worsened w/ a certain amount of time. Did Lyme (and plenty of Babs) cause my failures and unbearable anxiety at my new job (after I suffered the closing of a business, which I have never experienced)? Or did this stress leave me defenseless in fighting the Lyme?

I don't think we'll ever know the answer to this question. However, I now will always maintain that I had to quit the job that caused unbearable anxiety, because, unbeknownst to me, I had Lyme and Babs. Still, I don't know what difference it really makes.

If you are lucky enough to have a clear and positive diagnosis of Lyme, then you can begin moving forward, as long as you have a good, knowledgable Dr helping you.

OH -- and I am and always have been a worry wart. I remember my mother telling me, AT THE AGE OF 3, that I would have ulcers by the time I was 5.  Still, for many many years, I have enjoyed a very strong immune system (which is probably enhanced by supplements).  So, jury's still out on that one, too.

 Did I miss any points?

I understand what you are saying and asking. Yes, I believe what you are saying may very well be true. There just aren't enough case studies and research to answer this, at this time.

Your post made me smile at how many times in the last 11 months since I was diagnosed with Lyme, babesia, and bartonella, that I have wondered if it wasn't all a mistake. I'm sick and getting sicker despite treatment, but still I don't want to believe these infections are the cause. Like you, I have adrenal & other medical problems, probably caused by Lyme, et., al., and these medical problems create a lot of my symptoms. Well, maybe, as you surmise, it's simply the problems and not Lyme after all. Pre diagnosis that's what my doctors said. But I remember how anxious I was for the years before my diagnosis to understand why all of these individual medical maladies were happening to me. At least with Lyme, I understand. And, though Lyme is difficult to test for, I have babesia RNA in my blood cells so there's no question on that diagnosis, and as I understand it, the bartonella tests were unquestionably conclusive as well. If I have those two, then why not Lyme? Makes sense, but I still don't want to think I have this because it's difficult to get rid of (is it even possible?), it's ridiculously controversial, and there are no clearly established treatments that are sure to work for everyone.

I have two friends with Lyme who see a well-known and respected LLMD and who are a year and two years ahead of me in treatment, and they're not better either. I totally agree with your desire to hear more about people who have gotten better. At this point, all I know of are people who are not better, who have struggled much longer than I with no end in sight. I've read the statistics, but where are those people? Are they still ok? Did they have multiple coinfections? Were they infected for years, maybe decades, before being diagnosed? This isn't like anything else I've had where I took antibiotics and both felt and got better. After 11 months on antibiotics, I'm not okay. To me, that's the scary thing.

And yes, I think there are plenty of people who have these infections who have no significant symptoms because their immune system handles it. I think I was one of those people for a long time. My symptoms didn't become pronounced until after my husband died. I believe stress took down my immune system and here I am. I also think there are plenty of people who have these infections and have symptoms, but are undiagnosed or misdiagnosed. Another group in which I can claim membership. For me there is not yet peace around this diagnosis. Before I found out, I hoped I had it because I really needed an answer and I thought it was not difficult to treat. After I did some research, I was hoping hard that one of the other possibilities (hormone imbalance, thyroid, etc.) was it. But really it wasn't my choice to make. Sigh.

Rose

At least, if you are still discussing it three years down the road, I hope you will not have more ailments on your list. At some point I keep expecting this thing to quit advancing, at the very least, and begin receding.

r

Patti - What an ordeal! I am glad you've probably only had this since 2003. Your doctor was partially right about the possible spider bite since ticks are in the arachnid family but it sounds as if he did nothing to help you. You've had some severe symptoms. I hope your digestive system is better now. I can't remember which thread has the comment about babesia and anorexia. One wouldn't think a "bug" could cause anorexia, but I do not deny that anorexia has been an on and off problem for me for years. I didn't understand what anorexia was until I saw a TV documentary several years ago and then the light went on - hey, that's how I am! So, are you saying your inability to eat stemmed from an intestinal blockage? Was that caused by Lyme (and/or coinfections)?

Rose

Have 2 sons with lyme and co-infections.  If another member of the family gets a tick bite I will go directly to 6 weeks on doxyclycline and if that doesn't do it I would by-pass all the other drugs, suppliments and put them on a coil machine. I have spent a small fortune on drugs and suppliments etc. and they only drive the spirochete into a cyst form to come out and become active after these treatments are stopped. Just my opinion and hope this helps someone.

lylaso, I can sure see how you would have doubts. At least in my case I have lots of Lyme symptoms, but it wasn't always that way. I never got a rash so I am unsure when I got this, but I can trace back through symptoms to a time when mine were like yours: chronic low-grade headache and pressure, and unexplained anxiety. The anxiety eventually morphed into anxiety attacks that came on suddenly and in all sorts of situations during which one would not reasonably have anxiety. I think it is amazing that anyone thought to test you for Lyme. That didn't happen for me until I was very sick and I insisted on testing, decades after the symptoms mentioned above. I am wondering, are you getting treatment for Lyme based on the LLMD's test results?

Rose