KML1997- First of all I would like to take the opportunity to say congratulations! If you were genuinely dealing with Lyme for a year, it sounds as though you have undergone a successful treatment if these are your only remaining symptoms, and this is wonderful news. I dont have much advice in regards to treating your headache or eye pressure, (ice pack perhaps?) but I have a good bit to suggest to you about
this stage of your treatment.
This is a crucial point in your treatment as you want to make sure you eradicate as much of the bacteria as possible to ensure a successful treatment and prevent a relapse. I would ease back into as much healthy activity as possible to rebuild your strength and your immune system, such as exercising regularly, without over doing it. Many LLMD's will slowly and gently continue treatment for a couple more months at this point using a pulsed protocol to slowly wean you off ABX instead of quitting all at once. You may also consider an herbal route, which I couldnt advise you on, however as you know most of the more frequent posters are mainly using and advocating herbs and could direct you in this area.
If I were you I would try one of these methods (short follow up of pulsed ABX or herbs) and try to move on as quickly as possible. Positive thinking and changing your thought patterns are an important part of healing, and while we love hearing from you, especially if you are showing this type of improvement, you might be better served to go look on a headache forum or a migraine support group instead of a Lyme forum and listen to their advice. If you are really steadily and noticeably improved over the past year, you may be at a point where you can just focus on and treat your few remaining isolated symptoms alone, and not necessarily associate them with Lyme or a systemic disease process anymore. This is very good news as I see it. If you are not experiencing extreme fatigue, arthritis, noticeable cognitive issues, neuropathy, fever or any of the other dozens of symptoms Lyme can cause, then you can almost count yourself amongst the normal healthy population, as many many people without Lyme experience headaches and head pressure all the time.
As you already know, Lyme and Coinfections can become extremely complex. Theres so much mystery and guesswork invovled, And you can spend the rest of your life testing and obsessing (not saying you are) and wondering if every last microbe is gone and if every isolated symptom you have is an untreated coinfection or a relapse, but at the end of the day there is no way to PROVE you are healed besides HOW YOU FEEL. Even with all the testing and treatment methods, even the most experienced LLMDs and experts will say to treat until you FEEL better. Theres no test that prove remission or cure from Lyme. If you feel good and feel like you can start to resume a normal life, then do just that, and build back your strength slowly.
I wouldnt worry about
trying too many different or new treatments than what you already have as a "test" to see if you still "Herx" like some may recommend, as this could lead you to think you are still infected when you may very well be on the path to successful treatment already, and this could just muddy the waters. Call your LLMD back and continue the ABX you were on in a reduced pulsed pattern for another couple of months.
I also wouldnt worry too much about
whether you addressed any certain coinfections or not, because in many cases "Lyme" is a complex of different diseases, and once you successfully treat the disease that is causing the most trouble to your body, your immune system can step back in and handle the rest. For example there are many people who have asymptomatic Bartonella or Babesia, and they never become ill from it because there is no triggering pathogen like Lyme that brings the whole house down. Likewise once the major disease is tackled the others can be often go into remission naturally as the immune system wakes up and does it's job again. While it is true that head pressure is commonly associated with babesia, NO ONE can claim that any one particular symptom is DEFINITELY associated with any particular coinfection. You tested for coinfections and couldnt tolerate the empirical treatment for babesia, and while testing can be inaccurate, I wouldnt worry about
treating a coinfection based on one symptom if you no longer have other symptoms like fatigue, or widespread symptomatic evidence of systemic illness.
You might consider a CD-57 test to follow up on your immune system strength, as some LLMD's use this as an endpoint to treatment if the CD-57 is high and the patient feels well. Maybe also do a complete blood count and complete metabolic profile to make sure your numbers are good across the board and you arent missing anything. This may be the the most crucial point of the whole treatment process, 'wrapping it up', so you really want o be vigilant, and do a thorough self inventory of your health and try to make sure you are aware of any symptoms you may still have, because again, the only real endpoint of Lyme treatment therapy is how a person feels, and one or two nagging symptoms have caused people to 'get greedy' and continue treating for years on end, and sometimes they get worse from over treating and actually lose the progress they made. It's definitely a balancing act, but the objective is to be able to stop treating at some point. You hear a lot of people claim to be at 90% but who are still on hardcore treatment and even continue to do IV ABX. I don't know if these people are lying or exaggerating about
their treatment progress, but if I personally ever reached 90% I would be happy with that, and wrap things up with a moderate pulsing regiment for a couple more months and call it a day, unless I had a noticeable relapse.
It doesnt sound like you are completely out of the woods yet, as you mention you still feel sick from time to time, and I dont think you should let your guard down completely, but I think you should feel very proud of your achievements so far and you should be applauded for coming on here to post acknowledging SOME improvement, because evidence of improvement through treatment seems difficult to find on this site and this can bring a lot of hope to other readers. I personally LOVE hearing members use words like "back to normal." So I want to thank you for posting this, and wish you continued and sustained success, and please when you wrap up your treatment, do take the time to write a success story thread outlining which antibiotics you used, dosages, frequencies and length of treatment, how long it took you to show improvement, and hurdles and difficulties you faced and how you overcame them. This information will be extremely helpful to others reading this now and into the future.
I hope you continue to improve and you can use those 3 magical words, "back to normal" to describe your everyday life instead of just every other week. Like I said, it would be great to to hear not just for your sake, but for the hope it can bring to all the other members.
Good job so far, and Please do keep us posted.
Post Edited (logmoss82) : 8/8/2017 3:47:30 AM (GMT-6)