Hello, mc thanks for asking. I am on my second month of antibiotics with really not much improvement. I will discuss IV treatment at my next appointment, which is at the end of this month. It seems like ever since I started taking the antibiotic, my old symptoms have gotten worse and now have new ones (joint and bone pain, that come and go) that are not going away! And I still have this awful brain fog which is the worst symptoms for me.
How about you? I'm sorry I haven't been on the baords lately, did your results come up positive? What's been going on with you?
good to hear from you. I know the going is slow. It's hard. We all want instant results. I remember you asking questions when you started abx about, is it a herx or reaction to meds. I know what you mean now. It's hard to tell.
I had my llmd app. 1 week ago. Started high doses of doxy last Thursday, 600 mg a day. The Pharm. almost didn't want to fill the script. I have 5 refills. He said he was concerned because he has never seen such a high, long prescription. He asked what I was being treated for and then had to call someone else, I think he said CDC, because it wasn't in "his book". I was thinking oh my god, I finally get a doc to help me and now I can't get the meds. Well, in the end he did fill it but he seemed concerned.
So I started the meds Thursday. I was feeling so bad before and it's hard to tell what's going on.
The llmd said based on my symptoms, brain mri, and IgeneX results he thinks I DO have lyme. My IgneneX was neg, but I had some lyme specific bands come up positive and ind. He would have gone the picc route, but I NEED something less expensive. I go to the VA so I don't have reg. insurance. Everything is coming out of my pocket since the ID doc. at the VA does not think I have lyme. Doxy meds are really cheap. I was surprised.
He thinks I have co-infections but is waiting to test for those because of the expense. I'm just glad I'm finally moving forward. I was stuck for so long not knowing anything or able to find ANY kind of help. It was great to see a doctor who knows these symptoms are real and not chalk it up to stress/anxiety.
I start another abx next week, sepra, I think I'll go to a different pharmacy. I just don't want to press my luck at the same one.
How are you doing on the food restrictions. I'm not perfect, but am eating better than I use to. Also I'm going to force myself to take my dog for a walk today. I'll try a detox bath when I get home. I'll keep you updated. I hope you see improvement soon. Take care. mc
mc, it's good to hear you are being treated, finally. What bands were positive and Ind? Why does he think you have co-infections?
Your doc is adding another abx? I'm still on the same one (cefuroxime), my LLMD did not add another abx just increased the dosage. You know, some days I think to myself, I wonder if I really do have lyme. I think this because I have heard from other people/docs that IgeneX is not a "reliable" lab, that they give to many positives. I would hate to be pumping antibiotics in my body for no reason!
About the food restrictions......I am eating eggs, eggs, eggs every morning and getting sick of it! I don't know what else to eat. I do slip once in a while but am pretty good over all.
On my IgeneX IGG 39, 41 =ind
Igm 31= IND
I know what you mean about not being sure if it's lyme. The only thing I know for sure it that I HAVE SOMETHING. I don't know if it's a bacteria, viral, or some kind of parasite. I Think those are the 3 major catagories. I'm pretty sure it's not a parasite. For me that leaves viral or bacterial. All my previous tests have not shown anything. I think I really would rather have something bacterial than viral. The igenex test is at least showing something going on.
My symptoms resemble lyme. This is the closest thing to any kind of answer I have had. The reason he thinks I have co-infections is when I wake up in the morning the bottom of my feet are really sore. Like I had been standing up all night long. I'm going to start sepra next week.
If it's not lyme or lyme-like then the next thing I let my mind wonder to is what if it's some weird strain of HIV? HIV 2 has milder symptoms that regular HIV. How many strains of HIV are out there? I'm not in any high risk category. I just don't know. I try not to go there. I've had lots of HIV 1/2 tests but I have something STRANGE that is not showing up on tests. If I can make progress on antibiotics in the end I don't care what it is as long as I start to feel better. I guess if 6 months from now I've made no progress or feel worse I'll have to wonder if it's viral. I think I'll go boil eggs now. Take care I'll write again soon. mc
mc, PLEASE do not mention eggs ......I can't stand them at this point! every morining that is what I eat. It gets old after a while, ya know?
I know what you mean when you say the bottom of your feet hurt. Mine are very sore in the arch and heel area.