Avatar universal

Are migraines a sign of worsening Lyme -- or healing?

Hi, I'm new.  My adult son has Lyme, diagnosed within the last year following two years of chronic pain, useless PT, etc.  He's been on the 4 antibiotic regimen for 6 months and recently the pain has been getting worse.  In addition he has come up with a new symptom -- a migraine that is in its 9th day with extreme sensitivity to light and sound as well as nausea and head pressure.  What kinds of docs should he be seeing?  We've been to the ER, to the primary care, to the Lyme dr, to the pain clinic --
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Avatar universal
I'm sorry to hear about what your son is going through.  

There are quite a few different approaches to treating Lyme (including which antibiotics to take).  In addition, Lyme often brings along other infections such as babesiosis (which I had), ehrlichiosis, and several others -- each of these co-infections have their own set of symptoms, and each medication approach can affect a particular person in ways others don't.  Bottom line:  there are a lot of variables in play.

What do the various docs say about the cause of the pain and what alternative treatments may be less painful?  
Avatar universal
PS -- Is one of your son's doctors acting as 'message central' with all the other docs to be sure there are not conflicts caused by different meds being given?  
Thanks, most docs say Lyme, Lyme arthritis has been ruled out by one, there seems to be a general consensus about it being nerve pain from disseminated Lyme and confections.  There is a central doc but we're just not sure if the pain right now is because the treatment is working or because it isn't; I wondered if anyone else had experience with that.  Thanks
Avatar universal
Lyme is a tricky beast ... symptoms can vary significantly from one person to another, and I can see why you would look for someone with your same symptoms to compare notes and treatment approaches.

There have been people posting here previously who had the same question about whether the pain was due to the infection or to the results of the treatment as the infections are killed.   "Herxing" is  a term you might search for on this site ... it's short for "Herxheimer reaction", in which the die-off of the bacteria cause irritation and discomfort and/or pains as the bacteria are killed and release their toxins into your body.  

It's a temporary situation, because the human immune system will locate the dead bacteria and eliminate them from your body.  So sometimes getting somewhat worse for a short time is the road to getting well.  Your doc can discuss that with you and whether it's what might be in play now.

Short answer:  yes, the current pain may be a good sign that the treatment is working.  Fingers crossed for you!  Keep us posted, okay?  
1763947 tn?1334055319
Symptoms vary from person to person. In addition if your son has co-infections, which is very likely, it requires different meds. The LLMD will be able to tell by the symptoms as to which co-infections he has. I have 3 so it's not unusual.
Avatar universal
I agree with Mojogal.  My Lyme doc tested us for Lyme and some other infections often found along with Lyme, and we both had babesiosis, which requires completely different antibiotics from Lyme.
Avatar universal
If it's of any help, I am in my 5th month of treatment and I am having symptoms now that I've never had before, and also symptoms that I've had but did not previously associate with this disease.  For example, I've made it through my whole life so far without night sweats (except for an occasional breaking fever, and this past week (after a really bad 48 hour herx the end of last week) I've had to change nightclothes up to 3 times a night because they are soaked.  Miserable - I feel bad for people who go through that for months... anyway, I believe maybe it's done with for now since last night was back to normal.  Just an example of something that isn't the same as, but might be parallel, to your son's experience.  Is he on any biofilm dissolving compounds?  I'm on/off a week at a time and I can tell they work because the herxing gets worse as more Bb are exposed. If he is, he might want to back them off somewhat until the headache lessens.   I hope his head feels better soon.
Avatar universal
I too would check in with the doc to see if a change in dosage or a switch of meds is called for ... but please call the doc's office and leave a short message about the current situation and ask if it's okay to reduce the dosage, and if so, how much.  Changing meds or dosages is definitely something the doc should approve beforehand, for several reasons.  Best wishes --
Avatar universal
One more thought -- does the doc have your son on supplements in addition to antibiotics for Lyme?  'Supplements' meaning vitamins and other non-prescription approaches.

Some docs focus only on the antibiotics, as mine did ... it worked, I got well, but I also came to appreciate the value of supplements to help the body deal better with the die-off of Lyme bacteria and also effects of other infections the 'Lyme' tick(s) may have brought along.  

Some Lyme docs (including mine) are not really interested in supplements, but with the doc's okay, I was taking several supplements that helped me feel a good bit better as the Lyme bacteria died and released all their 'chemicals' into the body.  I have never been much on vitamins and supplements, but it was very worthwhile in dealing with Lyme.

I still take some of those supplements, just because I feel better when I'm taking them, including magnesium supplements and some others.  If the doc is not focused on supplements (mine wasn't), then it takes a bit of reading to decide what to try ... but there are a number of sources online and elsewhere that give serious, useful, and practical commentary on what to try.  

(One reason magnesium [Mg] is useful is that the Lyme bacteria use up the body's supply of magnesium, and taking supplemental Mg helps keep the patient's Mg levels up to par until the Lyme bacteria are dead and gone.  Actually, I *still* take Mg supplements every day, and it makes a difference in how I feel -- perhaps because the American diet is sometimes low in Mg.  Any kind of Mg that ends in '-ate' is said to be most easily absorbed by the body.  I currently still take Mg malate every day.)

Best wishes to you and your family -- let us know how you do, okay?
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