Partly recovered "Lymer" needs suggestions

[puzzledguy]

I had Lyme disease for many years. While I was diagnosed in 2002, I had sporadic knee swelling as early as 1996. I was treated with 5+ years of antibiotics (yes, I managed to find a LLMD), and improved substantially, though I still had a ways to go. I quit the antibiotics, went on antifungals and probiotics for a while, and various supplements, which made me improve generally.

 

Most persistent, however, have been neurological/brain symptoms. In particular, peripheral neuropathy, irritability, and possibly some depression. The neuropathy has improved (and continues to improve to this day--WOOHOO!) through a number of supplements, including NAC, probiotics, etc., and the general irritability and mood is improving along with it.

 

However, there is this thing I am prone to, which sometimes really bothers me. Near the top of my spinal cord, there's this area that feels as though it sometimes can become inflamed and "stuck". It's like a stiff neck that is moved upward, but a nerve issue rather than a muscle one. Back when my Lyme was worse, I used to get these weird headaches which felt like "static shocks" emanating from this region. Now it's less frequent, and more of a "pinched nerve" or "pressure" feeling, sort of like the area is swelling.

 

It's not constant, in fact for most of the average day I'm not aware of anything unusual there. However, once it gets started, certain things can amplify it. For instance caffeine--which I normally can tolerate very well, and which has a positive effect on my mood, except on days when this neck thing kicks in, not only are the positive effects of the caffeine reduced, but the neck gets worse. Similarly, sleep deprivation can cause flares of this symptom. Often, with the sensations come a more irritable and short-tempered mood as well. The things I have found to help it somewhat are supplements like NAC that reduce inflammatory stress, and sometimes NSAIDs, particularly aspirin, which can be miraculous as long as the symptoms aren't too bad. In fact, I have had the odd experience of taking an aspirin when feeling no physical pain, and having a sudden and dramatic easing of abstract emotional tension in my mind, that I didn't even know existed. This sounds eerily like what some of the people on the PANDAS board here say, which gave me the idea to post this in the first place. Also, alcohol "loosens" it (I'm in my 20s, after all, so I have experience with this).

 

The worst is when I'm already sleep deprived (which thankfully is not often), and this keeps me from falling asleep. I've tried both OTC and prescription sleeping pills, and both (especially OTC) seem to paradoxically excite this "irritability center", or at least not touch it, keeping me from falling asleep even when the rest of me is calm. As I said, alcohol helps, but I can't mix that with other stuff and it's not healthy to need that.

 

So has anyone here had a similar thing, and what made it go away for good?

[LNN]

Since you may have had illness since your pre-teens, it's hard to say what might be from Lyme and what might be a set of symptoms that could be separate. Aside from reviewing your remaining symptoms with your LLMD, you may want to look into the topic of methylation. Methylation is a type of "metabolism" where certain genes turn on or turn off chemical reactions millions of times per second. There are some doctors who propose that by identifying any unique genetic mutations you may have that effect methylation, you can use supplements to bypass any inefficient genes and get things working properly again. Many of the genes involved in methylation effect neurotransmitters, the immune system and the body's detox (transsulfuration) systems.

 

You can look into:

Dr. Amy Yasko http://www.dramyyasko.com/ ,

Rich Van Konynenburg http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ and

Dr. Ben Lynch http://mthfr.net/

Dr. Bill Walsh has also written extensively on the subject of methylation. His latest explanation of the role methylation plays in emotional health can be found in his book Nutrient Power http://www.walshresearch.mybigcommerce.com/nutrient-power-book/

 

You can get genetic testing from Dr Amy Yasko or from 23andMe and you can find a methylation support group on facebook called MTHFRsupport - they also have a weekly blog radio show and a web site http://www.mthfrsupport.com/index.html

 

Your symptoms may be residual Lyme, but many of us have found that methylation plays a role in getting back to 100%.

[puzzledguy]

Since you may have had illness since your pre-teens, it's hard to say what might be from Lyme and what might be a set of symptoms that could be separate.

 

I will only respond to this, for others who may be thinking of the same thing. While I respect your suggestion, I'm looking specifically if there are people who have had these kind of strange headaches, and whether they are typical for Lyme.

 

Anyway, to respond to the quote, I am also at the high functioning end of the autism spectrum, and as with others in that position, I have had this I had as long as I can remember. However, until several years after I had developed "full blown" Lyme (which itself was when I was 16), I NEVER had this sort of headache, and even the peripheral neuropathy I only got at 16. All of the symptoms before Lyme were mood-related and social, not physical. So yes, I have a vulnerable system, but this particular manifestation is recent.

[smartyjones]

I will only respond to this, for others who may be thinking of the same thing. While I respect your suggestion, I'm looking specifically if there are people who have had these kind of strange headaches, and whether they are typical for Lyme.

 

 

i'd say check out migraine headaches -- they present in many various forms for different people. generally, people are treated by a neurologist for migraines. generally, they are treated with meds.

 

the related neuropathy and strange feelings can be referred to as "aura". i personally have gotten a whole host of aura -- visual disturbances, shoulder pain, numbness, inability to speak correctly etc. you can google to see a newscaster in CA that experienced this on air after an award show in the past couple of years. some people experience great irritablity before migraine; intense hunger; intense diarrhea.

 

my doc does believe they are related to lyme and TBI and/or other infections. they got significantly worse for me while treating bartonella.

 

if it is migraines, a traditional neurologist likely will prescribe meds to take when you get it. you sound like you look for more natural means -- you may want to seek an integrative MD, perhpas one with experience in lyme.

[momcap]

 

 

So has anyone here had a similar thing, and what made it go away for good?

 

I myself have not had a similar symptom, but this reminded me of what a lyme infected friend described. She said it felt like a golf ball was being pressed up into the back of her head/neck. She describes it as the worst of all her lyme symptoms - and this poor woman is so very sick with many disabling symptoms. I don't believe she is experiencing this particular symptom anymore after many years of antibiotics - oral, injections, and IV. She is still very sick though.