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meds for Chronic lyme
After 34 yrs of suffering and not knowing, I am now on phase 1 of oral antibiotics and anti-malarial combo. Since I also have babesia and am working with a not so knowalegable MD, I'd like to hear stories of cure. My next stage of treatment should be IV, but which one(s) and for how long? Should this be via a 24hr pump or can I just get an in arm IV port to hit throughout the day? I won't let lack of health insurance and limited funds prevent my recovery, I'll beg if I have to.
For IV, I'd suggest trying rocephin(ceftriaxone)-. I had a great response to it(read my post "I wanted more Rocephin" , but no cure yet..I am hoping for another round of it. I have a long way to go.
I didn't have good response with doxycycline but I took it at low dosage-200mg, and was prescribed for my skin by my dermatalogist, not lyme.
The tips i would give you if you do rocephin: get yourself probotics, take it at least 4 hours or more before the infusion, and eat a meal, an hour or half hour before the infusion. That's way, hopeful, your digestive won't be so bothersome (for me it is more of rumbles, and burning in digestive and bladder areas without any pain, and more BM, but it didn't get to the point where I am having diarreha).
I also take chlorella once a daily, usually with evening meal or at night, and never with probotiocs.
Second tips--put heat on your arm for 10-15 min prior to infusion and after the infusion-it'll help to reduce stingy from rocephin meds inside the veins. The stingy is normal reaction in some patients,the nurses said.
Third tip--I am keeping this on my mind for next time if I have second round--infusion after dinnertime, not in middle of daytime.
Fourth tip--for me, biopatch helps to make it more comfortable--the dressings does not pulls the skin around insertion point, or hold the tube line too tighty. For me without biopatch, it feel like something is pokes in my arm at insertion point everytime I bends my arms inward or outward. With patch, sometimes I didn't realize the line is there, I got used to it.
Fifth tip, get dry pro cover or something equivalent--I am doing that for next time, if any, I am doing IV treatment.
I didn't have good response with doxycycline but I took it at low dosage-200mg, and was prescribed for my skin by my dermatalogist, not lyme.
The tips i would give you if you do rocephin: get yourself probotics, take it at least 4 hours or more before the infusion, and eat a meal, an hour or half hour before the infusion. That's way, hopeful, your digestive won't be so bothersome (for me it is more of rumbles, and burning in digestive and bladder areas without any pain, and more BM, but it didn't get to the point where I am having diarreha).
I also take chlorella once a daily, usually with evening meal or at night, and never with probotiocs.
Second tips--put heat on your arm for 10-15 min prior to infusion and after the infusion-it'll help to reduce stingy from rocephin meds inside the veins. The stingy is normal reaction in some patients,the nurses said.
Third tip--I am keeping this on my mind for next time if I have second round--infusion after dinnertime, not in middle of daytime.
Fourth tip--for me, biopatch helps to make it more comfortable--the dressings does not pulls the skin around insertion point, or hold the tube line too tighty. For me without biopatch, it feel like something is pokes in my arm at insertion point everytime I bends my arms inward or outward. With patch, sometimes I didn't realize the line is there, I got used to it.
Fifth tip, get dry pro cover or something equivalent--I am doing that for next time, if any, I am doing IV treatment.
I also did not have IV but I have Bartonella and Lyme. I started with doxy then when I found out I had Bart's, I followed Dr Burascano's protocol for treating Bart's and no IV required. Jackie mentions him above. I have had this about 20 years. I had no memory of being bitten but my daughters did.
I am sorry that you are sick and it is not an easy road at all but you will be cured, at least that is what I have been told.
If you can find a Lyme literate doctor, LLMD for short through ILADS, they will test you through IgenX lab which gives you the best results especially for co-infections which in my case has done more damage than the Lyme.
I am sorry that you are sick and it is not an easy road at all but you will be cured, at least that is what I have been told.
If you can find a Lyme literate doctor, LLMD for short through ILADS, they will test you through IgenX lab which gives you the best results especially for co-infections which in my case has done more damage than the Lyme.
Welcome --
Sorry to hear how long you have been suffering, but very glad to know you are receiving treatment now.
IV treatment is not always required or advantageous, for a number of reasons. Oral antibiotics can be just as effective, are easier to take, cost less, and have fewer risks because of no IV. Others here who have or have had IV treatment can speak better to that point.
That being said, if your doc is, as you say, not very knowledgeable, then he may not be up to date on current treatment approaches. Is the doc familiar with and following to some extent the diagnostic and treatment guidelines suggested by ILADS, the International Lyme and Associated Disease Society (www.ilads.org)?
At that website, there are posted Dr Burrascano's treatment guidelines (under a tab called About Lyme) -- here's the link:
http://www.ilads.org/lyme_disease/treatment_guidelines.html
There is much information on that website that may be useful to you and your doc.
Points to your doc for making the diagnosis. I too had Lyme and babesiosis, and getting rid of 'babs' was the first order of business, then an assault on Lyme.
Because you have been infected far longer than I was, IV may be required to reach all the nooks and crannies where the bacteria hide, but I would check that aspect to be sure oral abx won't work just as well. Fewer risks w/ oral abx.
Importantly, the doc should be aware of the ability of Lyme bacteria to create cysts when in an adverse environment (like when getting hammered by antibiotics), and it is important to take not only abx to kill the bacteria, but also to counter the cyst aspect so the meds can get TO the bacteria.
Suggested treatment approaches can be found on the ILADS website, but there are variations because Lyme is not yet nailed down entirely.
Best wishes to you, please let us know how you do and how it goes --
Sorry to hear how long you have been suffering, but very glad to know you are receiving treatment now.
IV treatment is not always required or advantageous, for a number of reasons. Oral antibiotics can be just as effective, are easier to take, cost less, and have fewer risks because of no IV. Others here who have or have had IV treatment can speak better to that point.
That being said, if your doc is, as you say, not very knowledgeable, then he may not be up to date on current treatment approaches. Is the doc familiar with and following to some extent the diagnostic and treatment guidelines suggested by ILADS, the International Lyme and Associated Disease Society (www.ilads.org)?
At that website, there are posted Dr Burrascano's treatment guidelines (under a tab called About Lyme) -- here's the link:
http://www.ilads.org/lyme_disease/treatment_guidelines.html
There is much information on that website that may be useful to you and your doc.
Points to your doc for making the diagnosis. I too had Lyme and babesiosis, and getting rid of 'babs' was the first order of business, then an assault on Lyme.
Because you have been infected far longer than I was, IV may be required to reach all the nooks and crannies where the bacteria hide, but I would check that aspect to be sure oral abx won't work just as well. Fewer risks w/ oral abx.
Importantly, the doc should be aware of the ability of Lyme bacteria to create cysts when in an adverse environment (like when getting hammered by antibiotics), and it is important to take not only abx to kill the bacteria, but also to counter the cyst aspect so the meds can get TO the bacteria.
Suggested treatment approaches can be found on the ILADS website, but there are variations because Lyme is not yet nailed down entirely.
Best wishes to you, please let us know how you do and how it goes --
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