posted
I've been sick for about a year and a half and in treatment for a few days short of a year. To date I've only had one instance of muscle and/or joint pain when, just after starting treatment, my left hip (psoas muscle) started acting up. I could hardly walk. It was horrible, but came and went after about 3 weeks.
However, this past week I started getting minor, but very irritating aches and pains all over. Mainly shoulders and knees, but I also get random pains in my hands, ribs and hips that come and go moment by moment.
I'm wondering... is this some sort of fancy new herx or could it be that my abx have stopped being effective? I ask about the latter because I've been on Mepron and Zith for almost 5 months straight. My LLMD and I were waiting to switch it up because I'm due to start IV therapy. Unfortunately, getting approval has taken over 2 months and so I've just been sitting on the Mepron/Zith combo while I waited.
The aches and pains really worry me as I've been able to remain pretty active through everything.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Maybe your doc could add in another antibiotic.
I took bactrim ds with malarone and zith.
It helped.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Chronic Triathlete~
I read some of your blog...and since I too was once very athletic I thought I'd share some things with you.
First, it is amazing that you are doing as much exercise as you are doing. However, if you have an infectious pathogen, I would cut way back on your exercise, for your body needs its energy to fight the pathogens...and you are using way too much energy to exercise.
Secondly, I would not recommend IV antibiotics. You just aren't sick enough to warrant the cost and risk.
Third, have you been tested for HHV-6, EBV, enterovirus and Chlamydia pneumonia? They can all give similar symptoms to lyme.
That's my 2 cents as one who was very athletic, got to the point where I had to sit on a stool to make dinner...did 6 1/2 months of IV rocephin, and have also been diagnosed with HHV-6, EBV, VZV, enterovirus and Cpn.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
CT- Big fan of your blog. You were nice to answer my questions about running and exercise a while back. I continue to be amazed with the level at which you can function!
I have more questions than answers, but probably someone on this forum knows....I thought Mepron was for Babesia. If you don't have co-infections, why the Mepron?
It is my understanding that Zithromax gets into the tissue, but does cross the blood/brain barrier, therefore you need an abx that will do that job as well. Thoughts anyone?
Have you had a course of Flagyl? Seems to be SOP for most Lyme cases to attack the cyst form.
Just to play devil's advocate to timaca regarding IV....yes, it will SEVERELY cramp your lifestyle, it's expensive, and carries some risk, but it might give you your health back. However, I don't think you've exhausted all your other options yet.
Sorry to hear about your new symptoms. I highly recommend some sort of prescription pain meds.
And finally, I agree that you have plateaued on your current treatment and probably need to switch up meds.
Good luck.
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
| IP: Logged |
posted
Tamica, In general, I think you're right about using too much energy. I plan on cutting back, but my LLMD had told me to "do whatever you can" so I just kept adding and adding week after week. I wasn't, until last week, seeing any impact on my symptoms to I just kept at it. Now, however, I think I've found the boundary. I plan to chop it back to about half.
Not sick enough for IV? How sick does one have to be? Most of my symptoms are neuro and IV is often the only way to reach them. Also, my LLMD is of the opinion that I'm not absorbing the orals well enough. IV gets around that issue.We discussed IM, but he prefers to use that as a follow up to IV.
As for viruses, yes... I've been tested for all but Cp. I came back + for HHV-6 and EBV, but the titers were not overly high. I forget what they were. Perhaps a Cp test is in order.
posted
GARunner, Hello. I remember emailing with you. How's treatment going for you?
Mepron My LLMD diagnosed me clinically with Babs. That's why I'm on it. Perhaps I should change my footer here.
Zith & BBB I'm also on Mino which, as I understand it, does cross the BBB. I've been on it almost non stop for 6 months. Again, I guess I need to update my footer.
Flagyl Yes. I did a course of that back in the beginning of treatment. Horrible drug, but necessary, I guess.
IV Still waiting to see what the insurance company will cover. After that we'll decide. It might be worth doing it for the time they'll pay for just to see if I respond. If I do then I'll extend the treatment.
posted
I know the spirochetes really like connective tissue, so maybe the abx are reaching into places they haven't gotten to before.
The same thing happens to me, and it tends to come and go. I am not quite sure what triggers it. I usually attribute it to a die-off cycle or the weather.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Chronic Triathelete~
I was put on IV antibiotics because I had a hard time walking to the top of my driveway, I could not carry on conversations or follow conversations for my brain was so foggy. If I typed an email to someone it consisted of about 2-3 sentences. I had to sit on a stool to make dinner for my family and often I was too tired to eat when I was done. My brain spect showed moderate global hypoperfusion. You are not that sick. Not near.
Prior to getting sick I could race 17 miles over a 13,000 ft mountain pass or carry half my body weight in a backpack over rugged terrain for 50 miles and 10,000 ft elevation gain/loss. I had gone from very healthy to very ill in a short period of time.
If you have a bacterial infection then I'd stick with oral antibiotics. The risk and cost of IV is not worth it at your level of health.
What were your titers for HHV-6 and EBV? HHV-6 is best measured at Focus diagnostics lab. Enterovirus needs to be measured at Arup lab. See www.enterovirusfoundation.org for more info. And www.hhv-6foundation.org
Cpn can get tested at any lab (I prefer Focus). Run those tests first. Those pathogens can also cause neurological symptoms. Don't start IV unless you are convinced that you don't have any viral pathogens, and it is your best course of treatment.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
Timaca, You know, I find you interesting because you are one of the first people that I started following when I was searching around for what was wrong with me. I came across some of your posts on another forum for CFS suffers (what I thought I had before I was properly tested for Lyme) and have always respected your comments.
I sometimes think you're a virus hammer and that everything you see is a virus nail, but I appreciate your consistent dedication to reminding us all that not everything is Lyme (there are a lot of Lyme hammers here).
Anyway... you're comments prompted me to dig up my test results of a year ago from Dr. Enlander (ugh). Here goes:
Cp IgG 1:512 IgM 1:10
Mycoplasma IgG 0.80 IgM 0.90
HHV-6 IgG 1:320 IgM 1:40
I've also had conflicting EBV and CMV tests. The EBV is positive because I had mono as a kid. However, they're not high (I can't find those pages). The CMVs are mixed with one + and one -.
My LLMD says that they aren't significantly high and that they'll come down on their own with Lyme treatment.
But back to your main point... yes, I know I'm not as bad off as many others. That's why I've been so on the fence about IV for going on 4 months now.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Triathlete~
Actually, I can be on the Cpn and HHV-6 websites telling people to check for lyme and other pathogens...so it depends on what website I'm on, what I suggest others to test for.
Your Cpn is high...that needs to be addressed. Your HHV-6 is also indicative of active, chronic infection.. Gee...you even have a 1:40 IgM...never seen that before...I've only seen negative. I would seriously consider HHV-6 as part of your problem.
I'd also test for enterovirus at ARUP...just because you could be like me...LOTS of pathogens reactivated.
What is your "positive" test for lyme? I would say HHV-6 and Cpn are problems for you.
EBV may still be positive in you because you have active chronic infection, not just because you had mono before. Titers of 1:320 or higher may indicate active chronic infection. I answered a post in the HHV-6 website patient's section about EBV...you can read it there.
You don't need IVs...you likely need a pulsed protocol to treat the Cpn, and valcyte to treat HHV-6.
Do some reading on the HHV-6 website, and Cpn website. I'm Timaca there too.
I'd like to see both of us very active again...so get these other things checked into.
Good luck, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
To be honest, you likely have active HHV-6 infection, that has recently occurred (at least at the time of your HHV-6 test). This is from the testing link on their website: (There is also info about IgG antibody titers at the same link.) You should retest for HHV-6 at Focus Labs Timaca
Primary infections & IgM antibody levels. In a primary infection, which typically occurs before the age of two, IgG antibody levels increase four-fold within several weeks. Most pediatricians test for IgM antibodies to confirm a case of HHV-6 associated roseola or febrile seizures. The IgM antibodies appear within a few weeks and can be detected for several months. A fourfold rise in IgG titers or the presence of IgM antibodies are considered proof of active infection. The HHV-6 IgM antibodies are typically produced only with the primary infection, and not in subsequent reactivations. For this reason, the HHV-6 IgM test is not very useful for adults. Many physicians believe incorrectly that an adult with no IgM antibodies, the infection must not be active.
[ 03-29-2009, 12:57 PM: Message edited by: timaca ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Chronic Triathlete~ I had to laugh at your race statement. Truly I hope to someday...right now though it sure seems a long way off. My family just left for a hike...wish I could join them!
Your lab tests are suspicious for lyme, but not diagnostic as you've noted (meaning CDC positive). Due to my history, I've come to realize that it is best to test for a lot of pathogens, then treat what is most obvious. I've known people (personally) with lyme results like yours from Igenex who did not have lyme but had HHV-6, or Parvo or were totally healthy....
What were your lyme results from Stony brook?
I'd definitely retest for HHV-6 and many other pathogens at Focus. If you go to this link, you'll see how to do it and what tests to order. Now, what I've posted there is overkill...basically it's all the tests I've had run on me at Focus. I would zero in on HHV-6, EBV, and Cpn from Focus, and Enterovirus from ARUP. Here's a link...you will have to sign in as a member or guest to access it: http://hhv6foundation.proboards.com/index.cgi?board=testing&action=display&thread=26
If you end up treating for Cpn, that protocol (basically what Dr. Stratton recommends) would cover lyme if you have lyme. His recommendation is doxy daily, azithromycin MWF and flagyl once every 3 weeks or so.
Get tested for a few things...treat what is most obvious. To me HHV-6 and Cpn are looking pretty obvious. I'm not a doctor, just another fellow sufferer who has made the rounds...
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
I've been tested by Stony twice. Both times -- a year ago and then again just before the new year -- were "inconclusive". I've never been CDC+, but IGeneX was "very confident" and my doc at the time even called the tech to discuss the results.
Of course, I've been told by other docs that they were "very confident" that I had nothing wrong with me. Go figure.
Thanks again for sharing this info. I'll keep you posted.
posted
CT, Ah...thanks for the reply...I'm glad to hear you had the other meds...I was starting to wonder about your LLMD. Treatment is going well. My doctor is THE MAN!! Each month, I feel a little better than the last. I think I am looking at 2 more months max with the PICC...pain level significantly reduced, less fatigue and brain fog, less neuromuscular stuff. Still have a long way to go, but the IV route has been a good experience for me. I ran 2 miles today (woo hoo!).
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/