long-term untreated lyme

Hi-

Although I’m not quite new to this forum, I have not posted much, but was hoping some of you might have an opinion to offer.

I had been sick in December 2012 for a week with low fever, body aches and very swollen neck glands, and was told it was viral. In January, I tested Igenex and CDC positive for Lyme IgM. I started tx in April 2013 with a LLMD and have been on Biaxin-plaquenil and recently started low dose doxy.

Given the test and symptoms, it seems likely that, at the very least, I currently have Lyme. My question, however, has to do with untreated long-term Lyme. The LLMD suggested that my myriad of symptoms over 27 years, could be Lyme-related. Until the recent test, all other tests in that time, for autoimmune, Lyme, etc. have been negative.

My symptoms started with migrating body pain, bronchial infections, joint swelling/pain/stiffness in my hands-fingers (bilateral), neck discomfort. Soon after, I developed an overuse injury (musician) and got whiplash from a car accident. It became difficult to tell which symptoms went with what.

More symptoms appeared: dragging right foot (I thought I had MS), fatigue and worse hand symptoms and overall body aches, as well as nerve compression/pain. Chiropractic tx and acupuncture never seemed to “hold” for very long. I also had endometriosis, which worsened greatly. Eventually more symptoms appeared: GI issues, off and on flu symptoms (sore throat, swollen glands) that never turned into anything more, skin pain, polyradiculopathy with numbness-tingling (twice), loss of hearing and tinnitus, buzzing in my legs, dry eyes and mouth, lightheadedness, head spins, migraine, swollen knees, scleritis, light sensitivity, eye swelling/pain, double vision, floaters, retinal migraine, hair loss, low adrenals, low-normal T3, extreme fatigue, very tight/stiff soft tissue, blurry eyes, unilateral joint pain (ankles, knees, thumbs, fingers), sore bumps/rash on scalp, difficulty focusing, increased infections. Since starting the tx, my facial skin has been horrible, as well as sleep – my cortisol is rising late afternoon and evening.

Some things are a little better since being on the abx, but if these symptoms are autoimmune, then they could better from the plaquenil. One thing the LLMD said was that it is unusual to have new symptoms appear so late in the infection – the above listed symptoms from “GI” on are over the past 7 years.

I was wondering if anyone else has had so many new symptoms appear so late in the infection. It’s so hard to tell if my history is Lyme or something else. I have committed to stay on the abx to see what happens, but do not want to treat the wrong condition with the wrong medication. And I’m not sure for how long to “try” the abx or if/when I should try a different Lyme tx (currently, I take a variety of supplements).

If anyone has any thoughts, it would be appreciated.

Thanks so much BarnGurl. I think my LLMD primarily treats with biaxin, plaquenil and doxy, but I will surely ask him about trying these other abx. I actually cannot take much doxy because I have had reactions to it, so your suggestions might be more appropriate in that regard. Thank again!

that was suppose to say GUT issues not guy issues. LOL but I have those too!!! I misspelled a lot in that paragraph above I was typing wicked fast. LOL ...sorry...

Emmicat,
Your story sounds almost just like mine! I was infected for 40 years before I started effective treatments and I've been amazed at how much Lyme, Bartonella and Babesia treatments have helped me! I've also had low functioning thyroid, and now that I supplement them, that has helped a lot too. I also have low functioning adrenals and have been supplementing them as well.

The doc that told you that those symptoms don't occur late in the disease is incorrect - I'm not the only one that I know of with new symptoms that come on late in the infection - it all depends on stress levels and what other things we are exposed to (mold, viruses) and the possibility of more infections (especially tick-borne) being picked up as well.

thank you so much for all this information. I belief I got lyme in the mid 1990's with a high fever so sick I could not get up. my health slowly declined after that. I was outside all the time gardening, riding my horses and playing with my dogs and cats. first I had anxiety given benzos and antidepressants, then I started having fatigue, told I had fibromyalgia. then I developed endometrosis and had a total hysterectomy and went on estrogen pills. then came depression more fatigue, a suicide attempt doped up with more drugs, more diagnosis of fibromyalgia, buldging disc in my neck, back pain, burning in my chest, later I was told i was hypothyroid, but not hashi disease which I just found out I have and was not given the right T3 medication for 7 years. told I was bipolar, several psyche admissions felt i was crazy. then 2 yrs ago, I broke out with a bull's eye rash on my arm while in severe withdrawal getting off methadone and klonipin. I was so so sick and thougth it was just the withdrawal, but after a year of slowling titrating off these drugs, I realized I was more ill than I thought and started seeing doctors and found out I have lyme disease. wow these last 20 years have been hell.

I did not think it was possible to suffer like this, and then get this sick with lyme. somedays I feel like I am slowly dying from this disease. I am so weak and depilated I cannot hardly do anything now. I am scared I will never recover. I ended up on disability. I enjoyed my job and being active. I miss it so.

Well, it's helpful to hear all of this - thanks!

Traveler, you make a great point about stress, mold, viruses, etc. I've seen many a flare due to these types of things, but it seems there are also times when none of these are present and still something flares. I also appreciate what you said in your last post about having one disease or different random conditions. There are so many systems of the body involved, Lyme seems most probable. One of my docs recognized it that way when I had sudden swelling of my thumb joints. She had tested me for all sorts of inflammation/auto-immune condition, so she suggested a Western blot - I was somewhat shocked when it came back positive - hadn't expected it since Elisa tests had come back negative a few times before.

Thanks Roots and mystery1 for sharing your experiences. I too, have been amazed at the similarities of experience and understanding in the Lyme community. I guess it's also amazing to see the many differences in experience too. There are so many ways Lyme can manifest, it's overwhelming. And it's really disconcerting to have docs not know what to do or to think it's something it's not, not to mention the cost of bouncing from one doc to another. The Lyme diagnosis seems to be a good fit, although I was pretty convinced I had Sjogren's (my dad had SS and RA).

I tend to agree about my doc being wrong about new symptoms manifesting and hearing about some of you with long term Lyme helps to affirm it - I will have to ask him more about that when I see him next. I believe he is a well-known LLMD and has been working with it for a while. In fact, my niece was infected last year, was treated short term, and it all started up again - she just started seeing him too. He's also requested no B vitamins - I have not seen that emphasized very much online. In some ways, I've gotten used to having all of these changing symptoms - it's been so long, it's seems to have become a way of life, but I am really hoping the tx will continue to show some positive results as I would really like to get back some lost parts of my life.

Hang in there and learn all you can. No one doc knows all there is to know about these diseases. Yet another good reason for a forum like this one where we all share so much!! You can learn from others experiences too!