So this is my story...The last 2 months have been rough, but hopefully I am now going in the right direction at least. I have been tested by conventional MDs for everything under the sun and they have thankfully come up empty handed. I even spent three days in the hospital for "failure to thrive" because I lost 15 pounds in one month and I was in so much pain. My story is like so many Lyme patients. The better of the MDs at least believe that I am in pain and are helping me with symptom management. The lousy pompous MDs have suggested it was a "psychiatric illness."
It was an astute Ob gyn that finally suggested I get tested for Lyme disease.
Once I started researching Lyme disease that was a real eye opener. I didn't know anything about the politics. I also realized I have had many of the symptoms for a while. (I don't remember a tick bite but we have a VERY outdoorsy lifestyle and I have had lots of ticks on me and lots of mosquitos bites) At least since last fall, but perhaps even further back I have had symptoms, but because I am a busy mom and I was in the middle of moving across country I blew many of the symptoms off and pushed on, vowing that at a later time I would have time to take better care of my self or get more sleep, or eat better, or do more yoga....
Last January was when things really started (we lived in Wisconsin at the time) I began having episodes where my back and neck would stiffen up and I would become incredible dizzy and shaky. I would have muscle tremors and I would feel like I may wet my pants and I would become incredible cold and chilled.
No matter how much I would try to relax or breathe through it would continue, it was clear my body was under some kind of attack. It would usually last about 45 mins and then suddenly it would pass and I would fall into exhaustion. It would happen a 3-4 times a week and it was usually at night. I went to my PCP and she tested me for a few things that came back neg. and then she suggested anxiety. I knew in my heart it was something more. I never took her anxiety medicine.
In May I took Flagyl for another infection and I think that really stirred things up. (I have read that antibiotics taken for something else can trigger Lyme symptoms to begin) After the short course of flagyl I began to have upper abdominal/rib pain on the left side that was really uncomfortable. I remember asking my PCP if maybe the antibiotics began to kill something and didn't finish the job. I wondered why my pain would show up right after I took them.
I reduced stress and cleaned up my diet but through the summer I continued to have neck stiffness, tmj, headaches and dizziness to the point where I would become concerned when I was driving. The dizziness and exhaustion continued all summer but I was still coping. In August I had a LEEP procedure for Cervical Dysplasia and after that my symptoms became way worse. I think it was a big blow to my immune system. I began to have much worse rib pain, sometimes on both sides. I would have burning pain (like a really bad sunburn) down my arms and on my chest and back.
The only things the reg MDs were able to do is perform a nerve block on my rib pain and that proved it was a nerve pain and not muscular and not in my organs i.e. spleen etc. ( I have read a lot of people have rib pain but many attribute it to muscles, mine is nerve pain. The pain also does not respond to ibuprofen or vicoden) It is probably one of the worst symptoms. It is much like shingles pain. It is much worse at night which is also consistent with neuropathic pain. Sometimes I don't want to wear a shirt or touch it and the pain is pretty much non-stop at best it is numb and at worst it is burning or cramping.
I have found a LLND here and I have been tested through Igenex. He is trying to figure out if my pain is shingles without a rash or somehow related to Lyme disease. My igenex test apparently left him with some questions so he sent out for further test, a 31 band epitope. When that comes back he is giving me the option of doing a course of oral antibiotics (monitoring my candida and response to treatment) followed by herbs or sticking with herbs.
Right now I am on a bunch of supplements including cats claw and rizols. I am also on 400 mg of Gabapentin which I may increase, I honestly can't really tell if it helps the pain or not. (I have started Bee venom for the pain with the ND and that is pretty intense. He hopes it will give me some relief, while we begin to treat the infection. I am not sure if I am going to stick with the bee venom or not. I am hoping clearing out the Lyme infection will ultimately help the pain.) I would love to hear from someone who has gotten relief from rib pain by addressing their Lyme infections? I did have a positive babesia and my CD 57 was in the 80s.
Here is the most difficult thing while I begin this journey....There is so much conflicting information out there regarding the best way to treat chronic Lyme. Most people seem to agree on is that everyone is different and Lyme infections behave very differently in people and what works for one won't work for all. So where do I begin? My gut (excuse the pun) tells me an initial course of antibiotics followed by herbs may be the way to go. I took 5 days of antibiotics (cephalexin) 2 weeks ago because my LEEP procedure wasn't healing and after that my burning nerve pain stopped. (I still have the rib pain.) If I wasn't in so much pain I feel like I would be able to go the herbal route first but I am hoping the antibiotics will help jump start me and maybe speed things along.
I posted my igenex results below. I really haven't a clue how to interpret them if anyone wants to weigh in.
Igenex IGM RESULT POSITIVE
CDC/NYS RESULT NEGATIVE
Igenex IGG RESULT NEGATIVE
CDC/NYS RESULT NEGATIVE