Hi everyone... Im fairly new, recently diagnosed and will be starting treatment next month with an LLMD.
I know alot of still experience lyme symptoms even though you are on treatment and/or are experiencing herx symptoms. However, id like to know how you all are coping that havent started treatment yet.
Im noticing sort of a pattern within a month....i have cluster days..which is a few days in a row in which my symptoms are at a PEAK and not only are they more intense..but there are more symptoms.
Then i have a couple days that are either more mild in severity..or just less symptoms to deal with.
I just had a few days where i felt like i was sea sick for no reason...and on one of those days i attempted to be a passenger in a car and drove just 10 minutes and i was sooo sick..car sick, in addition to everything else.
Im scared with this pressure in my head, dizzy feeling, balance off and adrenaline feeling i have.
Im wondering if there is a consistant pattern that others have noticed.
Is anyone who is on treatment able to say they improved dramatically in just a short time once they started???? I hope so.
My life is so limited that most of my time is in front of this screen or trying to care for my kids.
Posted by klutzo (Member # 5701) on :
Hi, Since Borrelia has a 28 day reproductive cycle, many people notice they have several days each month where they herx naturally. This would be about once a month, just like a period.
I have only had herbal tx, due to ABX allergy, so I can't answer your question about improvement on ABX tx.
From reading other people's experiences, I believe you will have some darkness before the dawn, ie. your herxing will be worse for awhile, but then you will see improvement on non-herx days.
Klutzo
Posted by Andie333 (Member # 7370) on :
I've been in treatment for 18 months.
But I had to initially wait about 2 months to see an LLMD. One of the things I did (at the recommendation of someone on this board) was to chart my symptoms each night.
The charts proved invaluable to me in tracking patterns, herxes, and then later, in seeing new symptoms that emerged with different treatments and others that began to subside.
The charts have also been really helpful for my LLMD.
First, Merry Christmas! It tells you a lot about my life that I am spending Christmas Eve on the computer here at LymeNet.
I am waiting to be treated. Not by choice. My LLMD cannot prescribe antibiotics to anyone not CDC positive. I tested very positive on WB through IgeneX and MDL but sanctions will not
allow my doctor to treat.
This is a travesty. I have been ill for more than 10 years but just diagnosed this year. I continue to become sicker. I have symptoms in just about every bodily organ. I have had periods
in which I could function better but a bad accident three summers ago seemed to make my symptoms much worse. I do very little now. I am
not afraid of treatment. I just want to get it started while I may have a chance at getting somewhat better.
All my best to you and good luck with your treatment! Janet
Posted by LisaS (Member # 10581) on :
Hello and Merry Christmas, I was diagnosed with Lyme a couple months ago. I found an llmd out here in Wisc, but it took 9 weeks to get an appointment, which is in a week. So Im not on treatment other than some of the vitamins Ive read about on here.
But I know what youre talking about with the symptoms that come and go. Everytime my sister calls me she asks if it is a 'good day' or 'bad day'. Thats about the best way I can describe it.
Its so hard to explain to people why sometimes Im up and at work and feeling halfway normal, and the next week I cant get out of bed.
Or why one day my arms and leg are numb, but the next its painful joints and then the next I feel a crazy vibration running through me. Its always different symptoms!
But I hope you get on treatment soon. Im so nervous about what being on abx is gonna do! But I wish you luck, and hope youre feeling better soon.
Posted by MariaA (Member # 9128) on :
quote:Originally posted by TNJanet:
I am waiting to be treated. Not by choice. My LLMD cannot prescribe antibiotics to anyone not CDC positive. I tested very positive on WB through IgeneX and MDL but sanctions will not
allow my doctor to treat.
Janet [/QB]
Janet, that's horrible!!!!
Is s/he able to give you anything at all, since he can't give you antibiotics?
Mark
Posted by notcrazykate (Member # 10458) on :
Hi! First let me say that my IgeneX tests showed that I had lyme (IgG positive) but not that it's active (IgM negative).
This means different things to different people, and to the last doc. I was going to it meant that my immune system has done a fine job on its own getting rid of lyme.
So I suppose I don't even know if my symptoms are because of lyme.
I do notice a pattern, though; I'll have 1-3 months of an awful time and 1-2 months of relatively good health.
During the flare-ups, the first month is all awful, and after that it waxes and wanes, although I haven't kept track of how often.
My most recent bout has been my longest and worst; from mid-August until currently, with a week-long period of thinking it was ending and then boom, got much worse.
I did a month of 200 mg doxy in mid Oct. to mid Nov.-ish, but that's all the treatment I've had. With that, I had a very rough time during days 2-8. Otherwise I don't think it affected the pattern I've noticed.
Posted by Robin123 (Member # 9197) on :
Janet, could you go to another llmd/doctor so you could start meds? You don't have to be CDC positive to get meds.
Posted by TerryK (Member # 8552) on :
quote: Hi! First let me say that my IgeneX tests showed that I had lyme (IgG positive) but not that it's active (IgM negative).
This means different things to different people, and to the last doc. I was going to it meant that my immune system has done a fine job on its own getting rid of lyme.
So I suppose I don't even know if my symptoms are because of lyme.
My first Igenex IgG was IgeneX positive with one band short of CDC positive. My IgM was negative. One doctor (not LLMD) told me that I had been exposed but that I didn't have a current infection. After reading on lymenet, I realized that I needed to find an LLMD from ILADS.
From reading here, I learned that even a negative test does not mean that you don't have an active lyme infection. Lyme is a clinical diagnosis. Even though a positive IgG and neg IgM in most infections means that your infection is not active, this is not the case for lyme.
I started treatment and after I went on abx, the subsequent 2 IgM WB's have been IgeneX positive with very significant bands.
I think most LLMD's would give a trial of abx since you have been exposed and you have symptoms. I'm not a doctor but that is my opinion based on what I've read and what happened to me. Terry
Posted by MarsyNY (Member # 7766) on :
Klutzo, Borrelia replicates every 12-24-48 hours not every 28 days. Dr. B did some studies on Flare cycles before and after antibiotics - I'll see if I can find the link.
PanicB I can say that I improved dramatically in just the first 2 months of starting antibiotics, However it's the long haul that concerns me.