After 5 1/2 years, some good news: definitive signs of healing.
Wow. It’s almost hard to believe. Yet, there I was feeling things in my ankles. Swaying less when my eyes were closed. Able to touch his fingertips with mine without wending a windy trail through the air first. Definitely better.
The Big Picture:
I saw the neurologist for the first time since beginning intravenous immunoglobulin treatments. (IvIg) Sometimes, it’s hard to tell whether I’ve actually gotten better. I did realize that the sharp pains in the bottom of my feet were gone. I’m not sure exactly when they disappeared. I simply noticed one day that I could walk without feeling as though my tendons were getting sliced open and wondered, “when did that go away?” And, I thought that I have been feeling a little more energy. So many neuropathic symptoms are unquantifiable (is my hearing any less sensitive?) and since there can be fluctuations from day to day, I can question my sense of the overall trajectory. However, yesterday, in the doctor’s office, it was clear: some of the nerve damage is repairing!
So, it would seem that we’re on the right path. There really is hope. All I can say is “hallelujah!” What a shift in my reality. To be able to start imagining things getting better and getting my life back on a more functional track. It’s overwhelming, actually.
In that vein, I am going to start looking for part-time work. I’ll post more about that and will contact people for networking purposes. Everyone has been so supportive all this time while I’ve needed assistance in just about everything. I look forward to actually being able to contribute again. I hope you’ll all help me find something meaningful and manageable.
IvIg addresses two different medical issues for me: the auto-immune dysfunction of chronic inflammatory demyelinating polyneuropathy (CIDP) and the nerve damage resulting from both CIDP and Lyme Disease. Here’s what I learned yesterday:
- What this is helping:
- general immune system – flooding the system with IgG to help fight infections, such as the Lyme and Rikketsia (Rocky Mountain Spotted Fever)
- peripheral nerve damage
- What kinds of improvement we can expect to see:
- less profound exhaustion
- perhaps more mental clarity
- reduction/elimination of burning, tingling sensations on skin and extremities
- reduction/elimination of sharp pains in extremities
- What we will not see with this:
- impact on sensitivity to light/sound/sensory input (though, increased energy seems to make the impact less dramatic)
- elimination of seizures (though, again, more energy seems to mean higher tolerance before seizures happen)
- elimination of cognitive impairment (we may seem some cognitive improvement due to generally better health)
- elimination of tremors
- elimination of neck pain and headaches
Some specific improvements we saw yesterday:
- where I had zero reflex response in my ankles/feet before, we saw a small, slow reflex in both sides yesterday
- where I could not feel the vibration of a tuning fork in either ankle before, I could feel it almost as much as other normal spots on the right ankle and just barely feel it on the left ankle.
- where I had very little sensation when he would poke/scratch the bottoms of my feet before, I could definitely feel it yesterday!
- in an exercise where I sit and place my fingertips on my knees then lift them up to touch his fingertips in front of my face, first with eyes open and then with eyes closed – I could not find his fingertips at all before. Yesterday, after a little flailing, I actually did make contact.
- before, if I closed my eyes and stood still, I would fall over from swaying uncontrollably. Yesterday, I was swaying a bit, but dramatically less and at no risk of falling.
Changes to protocol:
- add low dose of Vitamin D
- add liquid Vitamin B12
- see naturopath for dietary management of food sensitivities (part of auto-immune issues)
- change IvIg schedule from 35g every week, to 45g every 10 days.
What next (to happen in March):
- re-take neuro-cognitive exams for a progress report
- new nerve biopsy to measure small fiber nerve improvement
- consider re-trying meds for Lyme Disease and Rikketsia
- consider tapering down dosage of immunoglobulin
Some of those improvements may seem insignificant, but I can tell you that the inability to navigate terrain because I lost sensitivity in my feet has been scary. The inability to walk without looking like I’m drunk has been very disconcerting. Moreover, these were symptoms which had been worsening and had that trajectory continued, I would have eventually been unable to get around on my own. Also, imagine living with this when you’re cognitively impaired and sometimes can’t find your way around your own home. Seeing that trend reverse, I can’t tell you how relieved I am! It feels like a miracle. Ok, a miracle of modern science. Still….
While the immune system repair will create some more general well-being and the peripheral nerve repair will address some neuropathies, the medicine has almost zero ability to cross the “blood brain barrier” so, it can’t impact any symptoms which stem from the central nervous system. I may be stuck with some of the Parkinson’s-like symptoms created by damage done due to the release of toxins by the Lyme bacteria.
That said, the next time I see the doc – in March – he wants to me to take the neuro-cognitive exams again (the last set was pretty bad). He is certain we’ll see a lot of improvement. That may be because the base level of damage is not as bad as it appears. Being worn down by the exhausting effects of the neuropathies and a lack of general energy may be exacerbating the expression of symptoms. So, if I can stay generally healthy, keep my stimulus levels manageable and maintain proper rest, these symptoms may be far less pronounced than they have been.
Also, while the immune boosting may help my system try to fight the Lyme and Rikketsia, it’s unlikely that my body can really fight them without help. (In fact, it is activating the “battle” and we are seeing an emergence of arthritic symptoms and a return of the old neck cramp headaches. A few gains, a few setbacks.) At our next visit, we will also look at whether we can return to treating those diseases directly, if my body is strong enough and functional enough to tolerate the medicines.
Again, as with the central nervous system, all indications are that we may never clear my body of Lyme Disease. (I don’t know about Rikketsia) But, if I can manage my life so that I’m maintaining immune strength, staying rested and keeping stimulus at manageable levels, we may be able to keep the impact at a minimum, with more occasional flare-ups rather than a persistence of debilitating symptoms.
Sometimes, it all seems very complicated. We still don’t know which came first: Lyme or CIDP. Did the long-term exposure to Lyme trigger an auto-immune disorder, or was the disorder there, lying in wait, exposed and accelerated by the Lyme? And how do you approach treating them: in tandem or serially? How do you now which causes which symptoms and whether you can reverse those symptoms? Can the symptoms be reversed or mitigated whether or not you can eliminate the causal agent?
Only time will tell for some of this. Apparently, with IvIg, every patient’s experience of level of healing is different. Some patients can take the medicine for 6 months, see symptoms disappear, go off the treatment and experience permanent results. Others can taper down the dosage, but can never go off completely without seeing a return of symptoms. Others can’t taper the dosage. Still others, simply don’t ever see improvement. At least we know now that I’m not in that last category.
In March, the doc will do a new nerve biopsy. If the results are improved enough, we will attempt to taper down the dosage of the IvIg. Sometime after that, we will learn which of the other categories I’m in.
Meanwhile, he is changing the schedule of treatments. Some of you know that I had to have a break in treatments a few weeks ago. This was due to a low white blood cell count. Apparently, one of the possible impacts of the IvIg is that the body is being flooded with IgG antibodies, so it thinks it doesn’t need to create any on it’s own. It’s a negative feedback loop. The opposite of what you’re trying to generate. Sometimes this can be avoided by giving the bone marrow more time between treatments. Also, we’ve burst a few veins – quite a few, very painful! – along the way and spreading out the treatment dates will give my veins more time to heal. It will be the same monthly dosage, so each session will be longer, but fewer sessions per month. That will be nice.
Ok, I think that’s all there is to report. Please ask any questions in the comments. Or add anything I’ve forgotten.
Again, I continue to be so, so grateful and appreciative to all the wonderful people in my life who have been here for me as I struggle through this. I can’t imagine having survived without you.Tags: CIDP, immunoglobulin, IVIG, lyme, rikketsia