New here...learning curve, many questions, seeking advice

I am a midwife. I live and practice in Upstate NY.
I remember going to see "Under Our Skin" at the local Public Library in 2008 or 2009. Several friends and family members have been diagnosed with and treated for Lyme. I administered IV antibiotics for a month to my MIL several years ago for Lyme which was diagnosed months after she had a tick bite...she got better but has recently been diagnosed with RA.

A little history: Most of my life I lived a typical American lifestyle...I worked hard, ate unhealthy foods and didn't get enough exercise. By the time I was in my mid 40's I was burned out, obese, and I needed a knee replacement. (I had a total knee replacement in 2006.) It was a terrible, painful experience. I was determined to never go through another surgery like that. I started looking for another way. I read a book called "The Inflammation Syndrome." The author explained that all disease (diabetes, heart disease, arthritis) is related to modern lifestyle and diet(inflammation.). He recommended stopping grains, vegetable oils, processed foods, SUGAR. I couldn't imagine doing so because that's what I ate! I ultimately tried the diet and the results were amazing! I felt better than ever in my adult life and lost 100lbs...almost effortlessly. I started exercising regularly. I kept the weight off for many years. I had no further health issues, except for migraine headaches.

Then a couple of years ago (2013-ish) I started to feel crappy...fatigue, weakness, weight gain, decreased energy, worsening of headaches/migraines and my balance was off. I lived in a second floor apartment and sometimes walking up the stairs felt like more than I could manage. I had to hold onto the handrail to pull myself upstairs. I felt exhausted.
At the time I didn't have health insurance...I felt that I was probably having thyroid issues or possibly anemia.
I ordered labs through Direct Lab. My labs came back normal. (january 2014)

I KNEW something was wrong. I thought it might be Lyme. I'm disillusioned with western/allopathic medicine so I scheduled an appointment to see a naturopath at a local Integrative Medicine Center (they specialized in Lyme.) Long story short, the naturopath felt a Lyme evaluation wasn't indicated. She ordered a stool analysis, and I was diagnosed with adrenal fatigue. I was given a bunch of supplements and advised to continue my healthy diet, and to begin skin brushing and castor oil packs. I didn't feel better, and I didn't feel worse, so I never followed up after 3 (expensive) visits.

By Spring 2015 I still didn't feel any better. I continued to gain weight. I was still taking recommended supplements for adrenal fatigue. I meditated, ate well, exercised as much as possible, but still felt weak, exhausted, off balance, I was also experiencing forgetfullness/brain fog, inability to remember words, feeling disorganized/overwhelmed in my work. (I attributed this to menopause, middle age) I had a GYN exam. My midwife heard an irregular heart beat, so I had an EKG done. The EKG showed PAC's and Bundle Branch Block (this was new.) I did Mark Hymans's 10 day detox and had modest success with weight loss but still didn't feel any better. I decided to see an osteopath/functional medicine MD in June. She did an osteopathic manipulation. I had a very intense reaction to it...I was up all night after the treatment. I diuresed and lost 4 lbs! This seemed to trigger something else because I ended up a week later in the ER with severe migraines and then two weeks later with severe insomnia and chest/abdominal pain/tightness which finally culminated in a cholecystectomy. I rested a lot after the surgery and began to feel better...I was less tired and weak after...I thought maybe my health issues had been related my gallbladder all along. I felt okay for the remainder of the summer. In October I spent 10 days in the woods on a vision quest...I was climbing up and down riverbanks, hiking, and crawling in and out of my tent. When I got home I began to have severe pain in my knee. After a couple of days I couldn't bear weight on it....another ER visit; diagnosed with "bone on bone" arthritis....told I needed a knee replacement...saw ortho surgeon, had steroid injection, scheduled surgery.

Since then I've begun to experience pain and swelling in different joints...both hands, both ankles, and both shoulders. When the pain and swelling happened in my hands I scheduled an appt with my PCP...told her I thought I had Lyme or autoimmune disease. She drew labs which showed elevated sed rate and positive ANA...and I was referred to a rheumatologist. Rheumatologist did more labs, told me she thought it was Chronic Fatigue or possibly RA. Told me to come back if I had swelling in a joint. A few days later, I had severe swelling in my ankle...so painful I couldn't walk. She saw me, aspirated fluid from my ankle and sent it for culture and to test for Lyme...unfortunately there was not enough fluid to test for Lyme. She diagnosed me with rheumatoid arthritis. Told me to start taking plaquinil and methotrexate. In addition I've also recently developed TMJ.

Where I'm at now:

I've had Lyme, Erlichia and Babesia IGG and IGM drawn this year ...all were negative (All Labcorps)

My Primary Care NP is supportive and believes I probably do have Lyme. She has given me an rx for Doxy for 6 weeks...told me to take it for 6 weeks, call her at 5 weeks and tell her it's ineffective, she'll document treatment failure and give me another 6 weeks. That's all the ABX she can give me...12 weeks total. She's referred me to other LLMD's, for which I will have to pay out of pocket.

I am still working with a functional medicine osteopath, whom I love. (She doesn't accept insurance...I pay out of pocket) She's not too keen about antibiotics and feels that supporting my system is vitally important. She wants me to get through the knee surgery and then we'll deal with Lyme. We just found out in December that I'm homozygous for MTHFR c677t...we switched supplements and I'm taking methylfolate now...I feel much better since starting that.

I'm not taking Doxy or the RA meds. I'm eating a mito diet and taking some supplements.

Questions, thoughts:

I have felt for a long time that I have Lyme. I live in Upstate NY, I spend a lot of time hiking and camping in the woods. I have no memory of a tick bite. I did pull some bigger ticks (not deer ticks) off of me while hiking in Arkansas in 2008.

I'm confused about the lab tests. What else should I do? Should I get a full panel at Igenix? Are there any other tests I can have done that would be covered by health insurance?

Were my gallbladder issues related to Lyme? Could my GB have been a reservoir for spirochetes/cysts, and could this be why I felt so much better after its removal? I knew I had gallstones many years ago (CT scan)...but thought I healed my GB with dietary changes. The postop pathology report stated that the GB was inflammed, but there were no gallstones. This doesn't make sense, and makes me think the GB problem could have been related to Lyme.
The evolution of symptoms is so strange...I'm much less tired and I feel much stronger than I did last summer...the gallbladder removal helped... but the joint swelling and pain is something else...I never know when I wake up if I'm going to be able to move in the AM. Has anyone else experienced this sort of thing?

In 2006 I started living a healthy lifestyle...organic foods, gluten free, little dairy, no alcohol, sugar...caffeine free (on and off), no processed foods...I eat fermented foods on a daily basis. I exercise regularly. Could a healthy diet have slowed the progression of the disease if I do have Lyme? Is it likely (or even possible) that my current knee pain is not related to osteoarthritis, but lyme arthritis?

I read stories of folks that are soooo sick with Lyme. I was feeling pretty bad last summer...I felt like I was dying at one point...I spent much of my time in bed. I'm much better now. Is it possible to bounce back without any treatment if it is Lyme?

I am surfing the net, reading and watching videos about Lyme Disease. It's overwhelming! That's why I didn't pursue the topic further when I first went to see the naturopath in 2014...even though I suspected I had Lyme it felt too overwhelming to go there, then. Now that I have these other symptoms, I feel I have to pursue it. My gut says Lyme.

I'm just not sure where to start.

Finances are an issue for me now...I'm self-employed, business has been slow, and I'm certainly not in a position to look for a new job, at least until I recover from the knee surgery which is scheduled for next Tuesday.

Any thoughts/advice appreciated!

Thanks, Kathie

Post Edited (Kathie) : 1/11/2016 1:05:52 AM (GMT-7)

Hi Kathie!
Welcome to our community! I'm so glad you found us! It does sound like you are dealing with Lyme disease. And if anyone tries to tell you that Arkansas doesn't have Lyme - tell them that you have talked with someone that lives there (ME) and you know differently. It's like believing that only deer ticks carry the Lyme bacteria - it's been proven that not only do other tick species carry Lyme, but so do other insects like mosquitoes, biting flies of all types and other insects.

As Silly Sheep suggested, if you haven't ​yet​, it would be helpful 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 important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

Silly Sheep has also given you a lot of other really great information about the testing (there is no reliable testing at this time) and that many LLMD's will diagnose clinically.

Yes, the whole gall bladder incident could have been due to Lyme - I lost my GB to Lyme - although my surgeon commented that I had an so many stones and gunk that it was ready to burst. Lyme, with it's corkscrew shaped bacteria, can penetrate even bone, so getting inside organs and other tissues is pretty easy for it as well.

As for the waxing and waning symptoms - that's common as well. I lived with these infections for 40 years and I had periods of health that allowed me to get into, but not complete college. Start a career, but never was able to get past the first steps - and so on, my whole life.

Best of luck with your surgery, but do realize that your immune system is compromised. So I would encourage you to do whatever you can to improve it's function both now and after your surgery. Bone on bone knees need to be taken care of, but also realize that this surgery will likely set you back with some 'unusual' symptoms for a knee replacement. The surgery will cause quite a bit of stress on the body - not to mention having an artificial knee in it's place for the body to get used to. This will lower your immune function more, and allow the bacteria more 'free roaming' time. So do be sure to rest extra, eat well, and be patient. Once you recover from your surgery, then you can start on treating these infections.

And as you noted - the learning curve is horrendous! But we can help you sort out what's truth and what's not. You're not alone in this!! We are here to help guide you and provide that shoulder to lean on.

"Is this naive?" - not necessarily, but it's really hard to tell until you are already in it! I had no other choice but to use just whoever was willing to see me, but I always recommend that people work with an ILADS trained LLMD because they understand a LOT more than most doctors and have the conferences and each other to call upon if a case gets complicated suddenly.

With that said, I am far from the only one that has healed without using a LLMD. I would have an open and honest talk with your doctor to see where they stand. Would they be willing to do some research on your behalf and learn how to treat these infections? This could simply take up too much of their time.

I would also ask if they have any reason to NOT go to an ILADS conference - can't hurt to get more doctors trained!! And they used to have programs so that it wouldn't even cost the doctor anything other than room and board during the conferences.

If they are willing to use one of the already established protocols - like Buhner's, Cowden's, Byron White or a few others, it would cut down the amount of work they may have to do.

I would take this time that you have while you have surgery and recover to investigate it further.

Please don't anyone let me sound like I am recommending doing this on your own. I am not. It just happened that it turned out that way for me. It is extremely hard to not have expertise and knowledge to rely on. Extremely hard!!