Ongoing need for Doxycycline..... anyone else need it most of the time?

I have had Lyme since '88 with a diagnosis in '90 and treatment first with 3 weeks Rocephin and for the years since have simply used Doxycline several times a year when I was able to get a prescription. I have always used lots of immune boosting supplements and managed to be mostly functional with this.

In the past few years I had other conditions such as sinus infections, eye infections that were handled with rounds of Zith or Bactrim. Any antiobiotics seemed to give me a boost with improving my Lyme symptoms. Hard not having an LLMD and by necessity going with trial and error, most of the time the basic minimum toward treatment.

However, a year ago in January I went through 33 radiation treatments for breast cancer, both sides so it was a double whammy of radiation. Post lumpectomies and the radiation I am thankfully cancer free.

This has been the worst year for me since the first few for my Lyme symptoms. I use Doxycline from out of the country for the last 3 years but for my GI system try to only stay on it 6 weeks or so. This year I seem to need it constantly. When I stop taking it I can hardly move I am so stiff and in so much pain, plus the other vague but familiar symptoms, neuro and other. It seems to be triggered by the radiation, does not surprise me as it gave me incredible fatigue for months and my immune system was tanked. I could hardly walk because of hip pain the last couple of weeks of radiation, started Doxy on my last treatment and in a few days the pain improved.

Please forgive this lengthly post but what I am getting to is, does anyone seem to need to stay on an antibiotic constantly? I know I would feel better if I had sufficient treatment, such as IV abx, and will gladly do that when an LLMD is on my insurance plan. I am ordering the chronic tonic. But for now it seems like every time I stop taking Doxycycline I am back on it a week later out of necessity. I don't like to take anything more than necessary but this year it seems like I can not quite pull myself out of it. Making me feel really old and weak. Of course now I am 61 and do not heal as quickly, but I work full time and it is not time for me to retire.

Thanks in advance to any input or advice. This forum is great in its amount of information and honesty.

I would agree with that, I went with the resources that I had from the beginning and for the first 10 years my pcp was willing to write a script for Doxy every few months. It worked to keep the symptoms down. I did have an ID in Atlanta who first treated me, diagnosed me, but after that first round of IV abx my insurance cancelled. He told me then that it was probably too little, too late.

I could travel out of town to see an LLMD but think the IV abx would be prohibitive out of pocket, plus the length of treatment would be too long to be out of work.

I am in contact with the group in Georgia and as far as I know, there are not any LLMDs in the Atlanta area. I would still need to find one that is in my insurance coverage. I have worked for years to stay strong, I work full time and support my family. So far my undertreated treatment has worked pretty well. Would love to have professional treatment when it is available. Sometimes we do the best we can with the limited resources on hand.

I would definitely not recommend that anyone follow in my footsteps if there is a better route available. In the early 90's Doxy or iv Rocephin were the primary medications known to help. There were years that a few weeks of Doxycycline twice a year was enough to keep me healthy, but the Lyme has been an unwanted visitor at my home. There were others back in those days who were only able to obtain Doxycycline for Lyme, in the support groups I have interacted with. I have treated for weeks in the past until the symptoms were gone but it incessantly rears its head again. Is there truly a cure for Lyme if it is not diagnosed for the first two years? I would like to think so but that has not been my experience. There have been years that I did think it was gone for good. The radiation really did send my immune system for a spin.

I think you need to find a protocol and consistently treat, assuming it works for you. The more complicated a case, the more an LLMD could help guide you. It takes a lot of research to figure things out on your own. Not to say it is impossible.

I don't know how many times I see one person recommend something only to find someone else point out something to the contrary. We have to do lots of research to figure this out on our own. You can read Buhner's books. Or look into some of the other established herbal protocols. It takes a lot of time and effort to figure this out on our own. Or you can look into the Chronic Tonic. But, it is going to take a consistent effort to kill off Lyme and Co.

You don't have to go with IV's. Lots of people have gotten better on oral antibiotics or herbal protocols. This is just my opinion. I think I have had Lyme and Co for a long time and I am seeing progress on a combination of oral antibiotics and herbs. Everyone is different. You have to find what works for you. You won't know until you try.

For the 1st 20+ years I took just 100 mg 2x's a day. Thats all the doc's would prescribe....I used everyone from my pcp to urgent care for sinus inf to dermatology. Just got it where I could like some kind of beggar. You would think I was asking for opiates. My friend from Bulgaria would bring it back from her visits a couple of times.

When I starting purchasing it from out of the country and reading Dr. B's protocol, I take 200 mg 2 x's a day until I can't tolerate it and then I take a break after a few weeks. It gives me candida but I also ordered Diflucan. Took a few runs of Zithromax and Bactrim for a short while, just 2 weeks. I really don't like the way I feel on abx so I do them only when I absolutely need them.

~Linda~

You are very welcome. I'm glad I could be of help.