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Posted 1/6/2014 7:44 PM (GMT 0)
Background:

*After a back injury, I had a back operation in July, 2012, and, subsequently, had little feeling in my right leg and foot.

*This past summer, I started feeling terribly. Constant fevers, fatigue and exhaustion, felt like my head was going to explode. Blacked out, had bloodwork done (September), and tested positive for Lyme and Rocky Mountain Spotted Fever. I don't ever remember seeing the trational bulls eye, and, because of the problem with the leg, don't remember having a tick bite. Subsequent bloodwork showed (November) the RMSF in the past, Lyme active.

On my fourth go-around with Doxycycline.

I'm to the point where I can barely stand and function. I have a constant headache, sometimes dull sometimes acute. My head feels like it weighs a ton much of the time, with some heavy pressure.

My primary doctor is good and supportive. Have any of you felt like this, and what caused and remedied it?

Thanks.

Post Edited (Frankfan) : 1/6/2014 2:16:21 PM (GMT-7)

Posted 1/6/2014 7:49 PM (GMT 0)
Hello Frank, and welcome!

I highly recommend that you ready the New To Lyme threads, they are so informative and helpful.

I'm glad that you're PC is supportive. How long have you been on the doxy, you said it's your 4th round, but is that consecutive?

I've felt many of the same symptoms as you have, I have Lyme, Mycoplasma and Bartonella as well.

These are very tricky illnesses and everyone reacts differently.

I am relatively new to the Lyme world and this forum, but I will tell you that everyone here is extremely knowledgeable and super friendly.

Good Luck on your journey!
Posted 1/6/2014 7:54 PM (GMT 0)
Thanks much.

Yes, fourth go-around, almost completely consecutively, except for a few weeks in November. After I had been off it for a few weeks I started feeling lousy again.
Posted 1/7/2014 1:40 AM (GMT 0)
Hi Frank. I fell ill last summer and was on several courses of doxy. I showed mild improvement but still had many issues. I switched to high dose ammox. I also added Omnicef and stay on these 2 for several months with marked improvement. Hope this helps you !
Posted 1/7/2014 1:59 AM (GMT 0)
OBTW Frank my son also had chronic headaches, was diagnosed via bloodwork with Lyme. Omnicef cleared them almost immediately. Good luck.
Posted 1/7/2014 2:27 AM (GMT 0)
Frankfan. How long did each of your Doxy treatments last? Were you taking Doxy alone or was it prescribed with a cyst buster? Doxy has been shown in some tests to allow the spirochete to form into cysts and at that point, Doxy is ineffective against the bacteria.

Many people who are infected need to take different antibacterials to address the gram-positive and gram negative strains of bacteria in us. I don't know of any antibacterial that is effective in eliminating both types of bacterias as well as their other forms (spirochete, cysts, l-forms).
Posted 1/7/2014 3:28 AM (GMT 0)
Thanks.

Doxycycline Hyclate 100 MG, 2x a day.

All have been two week treatments.

I didn't realize how many such drugs were on the market!
Posted 1/7/2014 1:28 PM (GMT 0)
Hi Frank,

welcome to the forum!

Like MrsPallas said, if you are up to it, please read the entire 'New to Lyme?... Start here!' thread. It will give you the much needed information to start your journey.

It is encouraging to hear that your primary care dr  is very supportive and that he did the testing. I must add though that 200mg of Doxy will not do the work of killing those bugs, you might feel some die-off, but it is more like a maintenance dose. I for instance got it, when I was on a break from my abx protocols, to prevent the bacteria from multiplying. You will need double to make it efficient.

Also, I would recommend that you look for a LLMD (Lyme Literate MD) who will have more knowledge about these infections. Unless your primary care dr knows a lot about Lyme and it's coinfections (but I doubt it, considering the low dose of Doxy he put you on). In my personal opinion, you will have to look for someone with a lot of experience with Lyme disease.

If you decide to go see a LLMD, you can start a new thread 'Looking for LLMD in ____' - be sure though to enable your email address so people can send you the requested info by pm, we're not allowed to put dr's names on the forum.

One of our moderators, Traveler, had RMSF, so she can give you advice on that.

Since you feel so bad, can I ask you if you started detoxing? Detoxing is an important part of your treatment, you can find lots of info on it in the 'New to Lyme?... Start here!' thread. And of course, feel free to ask us questions whenever you feel the need, or just vent if necessary... :-)

Good luck!!

MarieLS

Posted 1/7/2014 3:21 PM (GMT 0)
I second what MarieLS has said, find an LLMD pronto!

...and welcome to the forum!
Posted 2/11/2014 5:04 PM (GMT 0)
Thanks for the thoughts and suggestions.

I've repeatedly tried to get in with a Lyme specialist near Nashville. It took about two weeks to get to speak to somebody, and when I did, the earliest appointment was for December 2014. I didn't know whether to laugh or cry. I found the same thing with a specialist in Missouri.

I'm in western TN...if anybody has any suggestions for a specialist, please let me know.
Posted 2/11/2014 7:22 PM (GMT 0)
Hi Frankfan,
Welcome to our community! As has been suggested, it would be really good for you to read through our "New to Lyme? Start Here!" thread. It's packed full of helpful and important information.

I would also agree with those that have said that you didn't get enough treatment. Dr. Joseph Burrascano wrote an incredibly informative article called, " Advanced Treatments in Lyme Disease" and in it, he explains that a daily dose of 400 - 600 mgs of Doxy are needed to kill the Lyme bacteria. Anything less only keeps it from reproducing in the body - which is why once off of the low doses your symptoms keep coming back. The infection is still very much there, you have only been 'holding it back' some.

Doxy will also send the bacteria off to hiding by either going into it's cyst form or hiding in biofilms, so anyone taking Doxy alone has to also use what is known as a cyst-buster. A good LLMD (Lyme Literate Medical Doctor) would know all of this.

On to finding you a doc that can help. I have a handful of referrals for the Nashville area. If you would like those names and contact info, please send me an email by clicking on my screen name or the little blue envelope under my screen name, but please include your screen name and what area you are hoping to find a LLMD in. Thank you!!

Next, you will need to be detoxing. Our suggestions are easy to find in the "New to Lyme?" thread. A 'clean' diet is needed - lots of veggies, no sugar, no highly processed foods, or 'fast food', and at least 64 ounces of lemon water each day to help flush toxins from your liver, kidneys and bladder - which affects the rest of the toxin load in the body.

As the bacteria dies, it puts off toxins. It's these toxins that drive our symptoms. So the better your body is at detoxing, the less severe your symptoms should be.
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