Hi There-
Happy Thanksgiving! And to those that celebrate... Happy Hanukah.
I feel I have a lot to be grateful for, even though I feel angry and sometimes sad that I have Lyme and sometimes I even go into denial. I think I caught the Lyme earlier than some people have and that may be because of increased awareness about chronic Lyme. I am also grateful that one of only 4 LLNDs in this state is only 15 mins from my house!
My Story: (Which is also described in detail in some of my earlier posts.)
I have been having symptoms that have been coming and going since last December but I was still managing to function until August of this year. I had already been starting to get worked up by medical doctors who of course attributed all of my weird symptoms to anxiety (I am not sure why they think they are psychologists and that they can do a through mental health evaluation in a 15 minute appointment!? Groan) I finally found a good internist who at least did enough of a workup and a physical to tell me that I don't have MS, Lupus, or cancer.
Every symptom I had kept circling me back to Lyme disease. So I did some research and found my way to a LLND. (all we have in Oregon-but they are good!) I had an igenex test done in Sept. and it came back with 4 pos. bands and 2 indeterminate. I have a CD57 score of 88 and I have an active infection of CMV and HHv6. I was also positive for Babesia.
I have been on Zithromax 500 mg since October 16th and Cefdinir 300 mg 2 x a day. Except for 1 week when I went off my Zithromax because I went into denial that I had Lyme disease and in one week I had some serious symptoms come raging back and I went straight back to bed in serious pain. I somehow decided all my symptoms must be attributed to the HHV6 and the CMV. I won't make that mistake again! I very quickly realized the antibiotics were helping big time!
I am actually hopeful when I consider how far I have come in only 30 days on antibiotics. I am looking forward to a time when I can support others and raise awareness, but I realize I have a ways to go still. Some of the worst symptoms that are gone on antibiotics:
1)Severe constipation (I read Virginia Sherr's articles on Bell's Palsy of the gut-it made a lot of sense) Now I am going 1-2 times a day. Which seems like a miracle. Who would think antibiotics would actually help my digestion issues!)
2) Burning pain in my arms and chest-to the point of making it impossible at times to even wear a shirt. If I had to leave the house I had to wear a silk undershirt or it felt like I was wearing cactus cloth. This symptom would keep me from sleeping. Now I am sleeping better, not the best sleep in my life but at least I can get a 4 hour stretch of sleep in. That is amazing considering I almost went two or three weeks without any sleep in early September.
3) Migraines. I haven't had one in almost three weeks. I had been having them about 3 x a week!
4) Buzzing vibrating sound in my ears when I swallowed or changed position, I am not positive if that was a Lyme symptom or a side effect of the Neurotin that they prescribed. But one day it was just gone!
5) Belt-like pain at the bottom of my ribs and top of abdomen. One of my worst symptoms! This is much better and I only have pain on the left side now.
Questions:
1) On Herxing: Today I started having sharp pain in my heart. Not much relieved it. Position change or anything. It was symptom I totally forgot I had and then it came back. It scared me but I decided it must be a Herx. Especially since I feel mostly better and my energy is so much better. It was there for 4 or 5 hours and then suddenly it was gone. Do other people have old symptoms rear their heads out of the blue. It is so discouraging especially when you are starting to feel better. Any advice on how to get through that?
2) Nerve pain: One of my most annoying symptoms that has been present since May 1013 for the most part has been a pain in my left side. It is sometimes felt in the last couple ribs, but more often the pain is just below my ribs. A doctor blocked the nerve in the hospital and they at least proved it was nerve related and not visceral, sometimes it feels viseral. (I have heard of people with Lyme thinking they were having a gall bladder attack and it was nerve pain that went away with Lyme treatment) Sometimes the pain wraps around and travels up the rib when the nerve dermatome is. I also had an MRI which revealed not a trapped nerve. My LLND thinks it is shingles that didn't have a rash and that it took hold because my immune system was compromised from the Lyme. I think it is radiculitis. Which I have read is caused by Lyme infecting the nerve root. It sometimes involves muscle spasm too and that does not seem to be shingles.
Did anyone have radiculitis/ nerve pain that has gone away with treatment? Or have you talked to other people with Lyme that had it resolve? How long did it take to resolve? Did it come and go and just fade away?
Thanks for reading this!
Finally I wanted to say that I also am on Valtrex. I do a FIR sauna sweat at least 5 x a week.
I take a number of Herbal and nutritional supplements as well. Including Artemisia and cryptolesis for the Babesia. I can post everything I take if somebody is interested.