I've noticed a pattern--distinct

[dolfnlvr]

I've had to keep a diary for most of this nightmare because #1, I'm a type A+ personality and none of the doctors were "listening" very well and #2 once they did listen they told me to keep a diary to identify migraine triggers (clearly they hadn't paid attention to the already 6 page long charted diary--hmff).  

Anyway--Here's what I've noticed.  During the week before my period (sorry guys) I have 3-5 days where I feel almost "normal."  Then, during the week that I supposedly "ovulate" I start feeling gut wrenchingly exhausted, dizzy and ridiculously unable to concentrate.  I also often find myself feeling "almost sick" during this time--like you do right before you "come down with a bug."  But I never seem to just get the bug and move on, it just sort of sits there making my throat "almost" sore and my body very tired and achy--even a little congested like I might develop a cough-which never comes.   This peaks right before my "four days of blissful normalcy" then I start the cycle again.  

Now, mind you, normal isn't my normal--I still can't exercise like I enjoy doing, I still feel some level of background "offness" but in general I can enjoy walks and do not find myself exhausted from housecleaning etc.  

And, after all this time, I still look for a truly solid diagnosis.  Lyme?  CFS (which I find to be a temporary, we know there is something but don't know what it is yet diagnosis almost defined as such by the beloved CDC and NIH)? Co-infection?  Hormonal shift?  All of the above?

Shouldn't 2+ months on amox and zyth have shaken SOMETHING up by now?  

Just got my Mepron yesterday.  They had to sepcial order it--I worry about taking it, as I have none of the symptoms of Babesia (night sweats, fever, etc) other than the constant tipsy feeling and so I worry about doing harm with the high powered drug in an attempt to "find out" if I might have it.  

Man this thing, whatever it is, is mentally and physically exhausting....

[Ricobord]

There was a study done at Stanford's CFS center where they tested for all proteins found in the spinal fluid of a group of known Lyme patients and a group of CFS patients.  There were about 400 differences in the proteins present, suggesting they are indeed different conditions.  The problem for Lyme patients is when they get labeled CFS and are told there is no treatment (especially wrong when there are non-CFS symptoms that are ignored!).

Stanford did a very small study with a handful of select CFS patients who showed high loads of certain herpes-family viruses, esp. Epstein Barr (causes mononucleosis).  They treated them with an experimental anti-viral drug that was designed specifically to work on these viruses, and they saw dramatic improvement.

Pamela Weintraub tells a story in "Cure Unknown" about her youngest son who developed symptoms consistent with CFS, primarily debilitating fatigue, and he ended up having a mycoplasma infection.

So, it looks like there are multiple things that result in CFS.  I hope and pray they develop better tests to figure out what the causes.

Every Fibromyalgia symptom is also a Lyme symptom.  I can see why CFS and Fibro are the two most common misdiagnoses for Lyme.

[youvegottobekidding]

Good luck with the Mepron, hope it brings you good results.

I do agree about CFS. The symptoms of CFS (Canadian definition) and lyme are just exactly the same! There has to be some close relationship, even if not borrelia, then a close cousin as you say.

[dolfnlvr]

We Type As gotta do something to feel at least a little bit in control!



BINGO--and since no-one around me knows or really understands what it's like inside this body it is nice to go somewhere that people understand.  I KNOW this--whether it is LYME or some co-infection or some other "thing" like it the symptoms all overlap and you guys "get it."

You know, I've read up on CFS, which seems to be showing signs of being caused by things like mycoplasmas, babesia, Lyme etc!!!  People with CFS are being tested and treated with similar regimines to the LYME regimine and finding relief after a few months of treatment.  So, again, whether it is ACTUALLY Lyme, or some cousin, or some co-infection there-in, I swear it is all related.  

I'm starting the Mepron tomorrow--Thanks for being around guys---

[Ricobord]

Lyme is definitely related to hormones.  Another Lymie told me that Lyme can infect the part of the brain that regulates hormones, causing imbalances.  About 3-4 months before my chronic fatigue kicked in, I had an incredibly painful ovarian cyst.  I had two more after the fatigue started.  And a month before my chronic shortness of breath started, I had the worst PMS ever. My doc called it "severe PMS" and said I was having hormone swings.  In hindsight, I believe Lyme was triggering the cysts and hormone swings.

My PA also told me that sometimes when kids get Lyme, their immune system holds it in check until puberty, when it comes out as the hormones kick in.  I don't think anybody fully understands the relationship btwn hormones and Lyme, but "worse PMS" is on the Burrascano symptom checklist.

I kept a diary at first, but it was too hard to review to see trends.  I managed to make up a couple spreadsheets, one for my daily regimen of meds and supps, and one for symptoms.  I rank a symptom from 1 to 5 each day. I also note when I start my period. I have a week on one page, so I can see how I am trending.  I have gotten a bit down and burned out the last couple weeks and I have flaked out.  But I realized today I have had very little tinnitus the last few days (Yay!  After near continuous since last summer), so I am going back to logging symptoms.  We Type As gotta do something to feel at least a little bit in control!

[JackieCalifornia]

I hear you, about being concerned about the meds making things worse on the way to making things better.  :(

If you know what signs to look for that your liver is not liking the treatment, then you're prepared to deal with anything that comes up and take action.

Part of what you may be dealing with is Lyme anxiety, which is a real biochemical thing, and then on top of that, the uncertainties in the medical community make it all the more nerve-wracking.  

Not treating the babesia /vs/ the possible side effects of treating the babesia:  there are risks either way, but not treating meant not getting well.  Treating meant possible side effects, but also the route to getting healthy.  

I understand.  I would also take Mepron again if I had babs.  I think there are some herbal approaches to babs, but that would be down my list after Mepron.

It's okay to be nervous and watchful.  But it's even better to get well.  

Hugs --

[dolfnlvr]

You are both great--and thanks.  I know you don't have the answers, and I know I keep asking them--but I appreciate you "listening".  Knowing that something is wrong and not finding the answers is frustrating to say the least.

And Jackie, Mepron is hard on the liver, so that's why the nerves.  Also, one of the main side effects is dizziness, which is also one of my main issues, so, not really aiming to make it worse :-(

I figure I'll start it this weekend in case I don't handle it well, that way I don't have to worry about work loss...

again...

A

[JackieCalifornia]

Good advice.

[youvegottobekidding]

The week before the period seems to change symptoms for a lot of women the lyme, more feel terrible for that week and some feel much better that week.
I spend years feeling like death warmed up for a week before each period then suddenly, during antibiotic treatment, it all changed and I felt better for that week instead.
AllI can tell you is, it depends what is going on with your hormones and what games lyme is playing with your glands.

If I were you I would just tell your lyme doc. He may want to check some hormones, or he may be able to explain right off the bat what is going on.

[JackieCalifornia]

See how you do on the new meds.  Not all antibiotics are created equal, and if you've got babesia, treating it will make a big difference, based on my own experience.

What harm are you concerned about the Mepron doing?  I just looked at WebMD's commentary on Mepron, and the worst it warns of is possible dizziness.  I'm very sensitive to meds of all kinds (even plain Tylenol) but don't recall any issues with Mepron.  

If you are concerned that you don't actually have babesia, then talk with your doc about your test results and how reliable/accurate they generally are.

I would guess, tho, that the doc wouldn't be prescribing Mepron just on a whim.  Babs is nasty stuff, and once treated, life starts to look a lot better, in my experience.  Yeah, Lyme is a hassle, but Babs was awful by comparison.