February, March and April~ Gee, it's been awhile since I posted an update!
February, I had a very similar experience as Nov/Dec....horrific full body muscle pain followed 9 days later with extended tachycardia. Both of these were associated with an HSV 1 outbreak on my lip, so I wonder if HSV 1 is the culprit. (I am on 800 mg of acyclovir daily.) My antibody titer for HSV 1 is as high as the lab measures.
In March/April, I developed a UTI, so was put on a 3 day course of Septra DS. I had a herx like reaction which consisted of feeling poorly, severe elbow pain, having to be horizontal, bad headache, stiff neck and an irritable heart which culminated in 2 tachycardia episodes in front of my doctors during my appointments with them. (This herx lasted about 8 days). I seem to always get a herx like reaction when I am given antibiotics (my PCP says I'm her only patient that does this--and she is quite amazed).
I've started rifampin and doxy to combat what appears to be a chronic bacterial pathogen that I'm also battling. I will likely get a herx to that in the next 2 weeks. Ugh.
I continue on the oxymatrine, and my Coxsackie B3 and B4 antibody titers continue to drop. I am staying on the ProBoost, because while I don't think it is helping the HSV 1 problem, it may be clearing up a toenail fungus that I have, so it's worth keeping onboard for the time being.
April was a better month for me (until the herx hit). I am grateful when I have better days, that is for sure.
On a happy note, my book is out: www.whensomethingswrong.com/ All proceeds will go to infection associated chronic fatigue syndrome organizations, including the HHV-6 foundation (see the purchase page of my website if interested in which organizations I am donating to).
Basically May was a pretty tough month as I did get hit with a herx type reaction from starting the doxycycline and rifampin April 27th. Symptoms included two bouts of tachycardia, one night of feeling really poorly, headaches, slightly stiff neck, right knee and left hip pain (it was hard to walk up the stairs in my house). Those symptoms cleared about 3 1/2 weeks after the start of the meds.
In June we took a family vacation, and it was the best vacation I had health wise since getting ill 7 1/2 years ago. I was pleased by the level of activity that I could do, while still reminded of what I could not do. For example, I would sight see with my family in the morning, and feel good about that. Then I'd rest in the afternoon, and they would take off for a 3 mile strenuous hike. I used to be able to do that too!!! Oh well, I am grateful for I what I could do!
I developed foot spasms and calf cramps that got increasingly more frequent and severe. I think this was due to stopping a magnesium supplement at the same time I started the doxy. I restarted the supplement, making sure to take it apart from the doxy and I've had no problems since.
I did try .5 mg melatonin one night and .25 mg the second night to see if it helped my sleep. It did. But, it made me very fatigued during the day, and also very depressed, so I stopped it. I might try it again (perhaps cutting the table into 8 pieces!) if my sleep becomes an issue again.
It is nice to look back at my older posts and realize that I have made progress over the years. Most of days ranged in the 3-4 range when I started posting on this forum, now I have days that make it to the 5-6 range. Yesterday was even a 7 for I did a lot (for me)!
Hi, I'm new to this site... My dr has been trying to convince me to take valcyte but i've been to scared. im on valtrex and low dose zithromax, and have been for 10 months. i've been sick for years, off and on-sick this time for 15 months. i have ebv, hhv6, cmv, mycoplasma, coxsackie- and prob more that i havent been tested for. i'm glad i found this site. sick of being sick!
July update~ The first 8 days of July were good for me. I even had 2 days that were very good (I did a lot of activities of daily living--but still had symptoms). I would rank those days at a 7 out of 10. On the 9th of July I got a severe headache. The subsequent days I got a slightly stiff neck, felt very disconnected from my body and had difficulty with my thinking and memory (I could not remember the name of the hollyhock plant for example).
On the 14th the headaches went away and I got significant intestinal cramping. This lasted for several days and reminded me of my 11 month battle with C. diff, so I stopped taking the antibiotics I was on and started increasing my probiotics.
On the 18th, the GI problems stopped and I got significant chest pain for a couple of days and also a 5 minute bout of tachycardia.
ON the 18th I had a routine blood draw (not because of these symptoms but for another reason). That blood draw caught a low WBC. So I saw my PCP August 1st and she decided to order some infectious panels to see if it were possible to catch what pathogen might have caused my symptoms and low WBC (we are guessing a pathogen (probably viral) has reactivated).
My WBC is now normal and we are waiting for the labs to come back in. It will be interesting to see if they tell us anything. A similar thing happened to me in April 2010 and it appeared that it was Coxsackie B3 and B4 causing me a problem at that time.
Needless to say it was not a fun couple of weeks. I have restarted the antibiotics without having any GI issues (thankfully).
As noted above, July was really a bad month for me. What surfaced in the lab tests was a HSV 1 IgM "detected." So we are somewhat suspicious that the falling apart in July could have been HSV 1 related. It was not VZV, CMV or EBV (possible cross reactions to HSV 1). It was also not HHV-6, Coxsackie B3 or B4 or Cpn. The IgM was "detected" a second time at this same lab so we know it was not an error.
My antibody titers to Cpn IgA have dropped significantly from >1:256 to 1:32. So the rifampin and doxy are doing their job.
August was a recovery month from my July meltdown. September was my best month ever in the 8 years of my illness. I had 18 days that were a "6" and one day that was a "7" (10 is normal). During September I had 3 back to back trips that I weathered fine.
October, unfortunately, has not been as good as September. The doctor is trying valtrex instead of acyclovir to see if we can better control the HSV 1. I had a headached when I started the valtrex, but otherwise I'm doing OK on it.
I am battling various chronic viral and bacterial pathogens, including Cpn. Last April I started 300 mg rifampin bid and 100 mg doxy bid. I went off the antibiotics on Tuesday and had a lab draw the day before so we would have an objective measure of how the antibiotics worked.
I am pleased to report that the IgA went from as high as the lab measures >=1:256 to <1:16. YES! The IgG is still high (1:512) but that should drop with time as long as the infection does not reactivate.
It is time for me to address the HSV1. (IgG is as high as the lab measures and IgM is "detected" and sometimes has a titer too.) My doctor wants to do this by upping my valtrex to 1000 mg, which I will do next week. He did not want me on 1000 mg valtrex and rifampin and doxy at the same time as he felt that would be too hard on my liver.
I am going to try to add in some supplements to help my immune system...beta glucan and transfer factor. I've started the beta glucan every other day and will up it to daily next week. Eventually I will get up to a dose of 500 to 1000 mg daily. (The capsules I take are 250 mg.)
I did start Manuka Honey in early February in the hopes that it will help me with any bacterial issues that I have (it is helpful when applied to wounds---I'm hoping it will help me internally too!)
I am feeling more strong and overall more "normal". (I almost hate to type that as I don't want to jinx anything!)
So happy to have beat back the Cpn. Let's hope it stays latent!
I do feel like the beta glucan has made a difference. I've had more "7" days this month than I had in all of last year. I have added in one of the transfer factors and hope to add in the other brand in the next couple of weeks.
I also plan on weaning off the oxymatrine and see how I do with that. My doctor has OKd this approach.
I also started on a vegetarian type diet (no cheese, very little low fat dairy, eggs only on occasion in baked items, but I will eat fish). Also not eating any junk or refined foods. I am hoping to keep my heart as healthy as possible (along with the rest of me). My diet was very healthy before, but I am making it even more so. And I do feel better eating this way. (Which is surprising to me since my diet was quite good before.....I worked as a dietitian for a number of years so I know about healthy eating.)
I was put on Bactrim DS for my second ever UTI on April 6th. I had a 5 day course of the antibiotic and ended up with a "herx" type reaction which consisted of significant right neck pain and stiffness starting 3 days after starting the Bactrim; then spine pain. That all went away after about 10 days, but on day 11 I had a 65 minute bout of tachycardia, which was NOT fun.
I hate these herx reactions! On the positive side of things I did not have to have my usual horizontal period where I cannot move for a day or so.
I'm looking forward to what the next few months bring and will likely post an update in August after I see my doctors.
If you will scan through my "Almost May" update you'll see that I was put on Bactrim DS in April for a UTI. I had had a few "herx" type reactions which included stiff neck, spine pain and a 65 minute bout of tachycardia. I was surprised to have not had my "horizontal" day as of that post.
Well, that "horizontal" day hit me while driving to an airport and trying to fly on a plane. That was horrible. Then my "flu like" day hit me while on the trip. It was severe body pain, severe chills and overall feeling bad.
Then of course I got the headache from hell. And couldn't move much for most of the trip.
This inspired me to figure out what the heck this is that happens to me when I take antibiotics. So I looked over all my labs over the years.
I found some interesting correlations....such that when I've happened to have had labs drawn during this reactions, what one sees is the % neutrophils going up and the %lymphocytes dropping.
This also seems to happen during some of my "reactivations" when I've not been given a medication but am falling apart. Other falling apart times the lymph and neutrophils are fine but my WBC and platelets take a nose dive.
So, that was interesting info...seems to point to infections. I saw my doctors recently and one noticed that my platelets are dropping. And indeed they are. Right now they are at the bottom of the reference range (140-150s). Anyone else have platelets on the low end or below the reference range?
I also have a HSV 1 IgG as high as the lab measures >8.0; with a positive IgM 1:20. We wonder what that titer was in May when I was really falling apart. Anyone else with a high HSV1?
So for now, the plan is to treat the HSV1 and try to get it better under control with valtrex.
I am weaning off the oxymatrine as it really didn't seem to stop some of the major reactivations I had.
I am just now starting to come out of the hole that the Bactrim DS put me into due to the "herx" reaction (or whatever it is that happens to me when I'm given antibiotics).
Anyone else have these kinds of issues with antibiotics?