HI! Freaking out here!

I healed with herbs. It was a long, slow process and I was not very patient. It was hard for me to accept that this was not an illness that you took some pills or herbs and poof* you were better.

Because of that it became frustrating and I became irritable. I had to learn to accept lyme first of all and then I had to learn that lyme was constantly changing in my body.

Very slowly, one by one, the symptoms dwindled down to nothing. They would be so slow and subtle that if I had not had a journal, I would have missed the entire disappearance initially.

Did I mention that it took some time? I think that was the hardest part for me. I so dislike not feeling well and so felling less than par was torture. I'm not a whiner but lyme wore on me and made me whine to my husband. I don't like to dwell on the yuckies in life, but lyme consumed me for months. There were not many moments that I was free of lyme. I was constantly researching and searching for answers and protocols.

I hated how lyme took over my life. I had to make myself get away from the computer. I had to make myself do little fun things that were easy. Sometimes it was just going for a ride in the car around the block. Picnics were fun because I was outside getting that needed Vitamin D.

Then finally..... I got well. What a trip. And then for months I had post traumatic stress and was constantly mentally examining myself to see if a symptom was coming back. I lived in fear of it coming back. It was horrible. I did not trust anything. A twinge and I would freeze and go into examination mode. Constantly trying to figure out if it was normal or lyme.

It has been over a year and I am more comfortable but I was so sick, I don't think I will ever get completely comfortable. Lyme is still in me and given any imbalance and it can rear its ugly head again. I just keep on by doing the right things as best I can.

Here is a comparison chart of symptoms. I use the search on my browser and type in sweats and you will see that symptom and how many bacteria show up with that as a symptom.

I totally believe that my night sweats were mycoplasma because of other symptoms along with the night sweats.

www.lyme-symptoms.com/LymeCoinfectionChart.html

As you can see many of the bacteria share the same symptoms.

Quick note to say that it is very hard to wrap you mind around the fact that so many doctors have seen you and just now you you have a proper diagnosis. I was taking 9 prescription medications before I was diagnosed with lyme, babesia and enrichilia. Now I take nothing.

Also, my first doctor was an LLMD, but he was overseas, so I finished my treatment with an infectious disease doctor. I believe in abx, so my experience with the ID doctor was positive. Fight! Kill them all!

Sorry - we do see this time and time again. Unless the Dr. is Lyme Literate - it's denied.

Not to mention - you had to pay $300 for that nonsense!

Don't expect anything better from the ID specialist - how much will that cost you?


Do you have a LLMD appointment set up for sometime soon?

Even if an ID Dr. doesn't deny it - he most likely won't be much help...they usually will only prescribe a couple weeks of antibiotics - and generally at too low a dose...
and you will need to see a LLMD anyway (if you choose to continue with abx)

It doesn't matter whether it's chronic or not - they don't need to distinguish. Treatment is until symptoms resolve.
Often if it's caught early - meaning in a few days or weeks...it can be knocked out with several weeks of antibiotics, but after that - months to years..you're looking at longer treatment - many months...to years.

No you don't get a referral from your PCP. You can start a new thread "Looking for LLMD in/near_____" and members can send you recommendations privately.

or you can contact ILADS:
ilads.org/ilads_media/physician-referral/

and you can also contact me - I will check my lists and send you names for the area you are searching.

Oh good!! I'm so glad to hear that you will be seeing a LLMD - and to be able to get back in with one that's familiar to you - bonus!!

But, I'm not sure why you would want to still see the ID doc???

Please do let us know how you are doing, and if you have any questions or concerns!!

Well the way I see it is that it would save money that you could use to start treatment/pay the LLMD.

It's very unlikely that you will get any help from an ID doc, unfortunately.

lpaiges23 said...
The LLMD nurse said that my first year of treatments would run 8-10k.

I want to be better...but that is...WOW, a lot. It will take some major financial figuring out, but I guess we have to do what we have to do to fight this nasty disease.

Is this for LLMD appointments as well as testing and antibiotics combined? Do you have any coverage - insurance for Meds?

If it's all out of pocket - then that sounds realistic.

Traveler said...
The thing is that there are quite a few symptom charts out there for these infections, and many group symptoms differently - so the only way to really know is to do treatments and see which symptoms leave with which treatments. There are a few "classic" symptoms which are known to be from specific infections, but that's never a guarantee that it's truly being cause by that infection for each person.

The advantage of symptoms charts for me, in the beginning in particular, is that right there in front of me were all the complaints/symptoms I'd had over the years that left MD's scratching their heads and writing down "Somatoform disorder". Yes it helped making me feel validated hearing/reading personal stories too, but the charts were an eye opener.

3 years later I'm still sorting out the co-infections, as pretty much everyone else is.

Just got hospitalized with cellulitis ON MY FOREHEAD. darnit. I just want one day without something. Started swelling a couple days ago, may be staph, waiting to see the Dr. This week has been a doozy.