No doubt Shapiro, Wormser, et. al., would say that what Heather is experiencing is from the "normal aches and pains of daily living," that she only really required three weeks of Doxycycline and she'd be healed.
Even worse, they, along with the majority of the willfully ignorant medical profession, would probably tell her to see a psychiatrist and that she does not have Lyme and does not need IV treatment.
Am I angry? You bet I am.
One hundred thousand thank you's of gratitude to Heather for sharing her healing journey with everyone. Thank you for showing the public the devastation of Lyme and the reality of Lyme herxheimer reactions.
OK... I wanted to wait for people's replies before I shared my fear. I was hoping someone would have replied that it doesn't have to be that bad.
I have not been treated for lyme disease yet. My appointment is next week, and I'm not sure if I'm seeing an LLMD or just a lyme friendly doctor.
So this year has been the worst of my health issues ever. Some of them really scared me. Am I really going to be WORSE if I herx? Should I expect to at least have a repeat of what I experienced? That's bad enough.
I am just now getting better! My symptoms seem to flare in late fall and again in early spring. I fully expect the worst of the symptoms to be gone until fall.
It's kind of hard knowing I can chose to have a somewhat healthy summer with the pain that I have grown accustomed to, and my new twitches/muscle jerks etc; or I can have this hell.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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I want to give you a resounding answer to your concern about the severity of herxing --
No! Not everyone herxes this badly and strongly!!!
I think there are so many variables that go into the reason for this -- the type of medications/treatments used, how aggressive the infections have become, the types of borrelia strains the patient has, how many co-infections are present, how much the patient is impacted neurologically before treatment begins, and more.
Some doctors and patients choose to undertake their treatment in a controlled fashion if at all possible. That is, they will try to control the severity of herxheimer reactions as best they can.
This can be done in a number of ways by the doctor and patient. One example could be staging the combination of treatments (like pulsing antibiotics, or starting with one or two meds/herbs and then introducing further treatment at defined times later on as the bacterial load is reduced).
Also, alot of the better LLMD's will make recommendations for the patient to assist them in boosting their immune systems and assisting their bodies in detoxing. Sometimes this is accomplished through taking supplements and herbs.
2. what meds and what dose/dosing schedule you are on
3. what detox and supportive measures you are taking - these are very important.
4. Yours and your LLMD's attitude about how much Herxing is too much. Mine says herxing should be respected and that pushing yourself will not get you better faster, that in fact it can cause damage. He says to back off when you feel too bad, then ramp back up.
When I said that I understand all too well what she is going through - these were my symptoms BEFORE ever taking antibiotics. I have had symptomatic Lyme for possibly as many as 35 years.
My Lyme was manageable at first so I ignored it (was in denial anythign was wrong), it was all different symptoms I thought were normal as I was growing up. But it gradually worsened through my early and late 20s, and in the last 6 years it caused me to become debilitated because I did not get proper diagnosis and treatment.
There are many ways to mitigate effects of Herxing, but treatment is not an option when you have Lyme. You do NOT want to get as sick as I have. At my worst I am bedridden most of the month, but the treatment is bringing me back around. My husband recognizes me again. This is priceless.
I hope you don't mind if I repeat something I posted before about what Herxing is (or how I understand it after lots of research and reading).
People who start to herx when on a new antibiotic or when they increases their doses are lucky (yeah I know that seems absurd), because it can be a very good supporting indicator that the medicine is working. However, absence of a Herx does not prove or support the opposite.
Everyone experiences Lyme differently, and everyone experiences Herxing differently. Some people never Herx, some people never stop Herxing until they are in remission.
Some begin to Herx a few hours after taking the new medicine or larger dose, and some won't Herx for a month, or anywhere in between. The reasons are many and complex.
In brief, Herxheimer reactions can bring about new Lyme symptoms, or increase old Lyme symptoms, and there can be just as varied and numerous Herxheimer symptoms as there are Lyme symptoms. Basically, you are turning up the volume on your Lyme by killing it off. The Lyme toxins that normally make you sick are increased when they die off. I hope that clarifies things for you a bit.