posted
I started on doxy 100 mg 2 x day last tues. By fri I started to think maybe I was gaining a little ground with this disease.
I woke up on sunday and wasn't too bad but by mid-morning the "foggy" and irritable feeling is back. Also the horrible tiredness is back. My husband said the slow and slurred speech is starting again also.
Is this a herx reaction or the symptoms returning with a vengeance? I noticed the fever and weakness and pain in my left arm are back also.
Just when I thought I might be getting me back again
Please help, thinking of calling dr tomoorow and asking her to go ahead with the picc she was talking about last week for the ceftriaxone.
Posts: 53 | From IL | Registered: Jun 2011
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posted
I took about 5 days of amox 6-8 weeks ago and by 3rd day was feeling like death so quit after 5 days. Then I thought they were making me worse and wasn't sure I had lyme.
These symptoms messing with my head and speech etc are just really scaring me.
Posts: 53 | From IL | Registered: Jun 2011
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posted
I took about 5 days of amox 6-8 weeks ago and by 3rd day was feeling like death so quit after 5 days. Then I thought they were making me worse and wasn't sure I had lyme.
These symptoms messing with my head and speech etc are just really scaring me.
Posts: 53 | From IL | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You don't "gain ground" with this disease in 3 days.
Instead, you "lose ground" in 3 days because that is when you start to herx and feel worse than you did in the beginning.
That's what happened to you on the amoxi. And, now on the doxy.
You treat this illness for months, not days or weeks like other illnesses you have experienced.
If you have had lyme for years, you will likely treat it for at least 1 year if not more.
Every time you start a new medication, you will get the bad herx. That is because each med has a different killing profile, so it will do a lot of killing at first and your body will react to all those dead germs and the toxins they produce. That reaction is the herx, or herxheimer reaction.
To minimize it, drink lots of water and squeeze lemons into the water. Lemons are a natural cleanser of the body. Water flushes out the body.
You have to go through this time of feeling bad, symptoms worse, to get rid of these diseases. You can also herx every 28 days because lyme has a 28 day cycle. The first herx is generally the worst.
So, just know that your reaction to these medications is proof that you have lyme disease. That is not my opinion. That is the opinion of Dr. Joseph Burrascano, lyme disease pioneer and lyme guru of the U.S. and world. See what he writes on page 7 of his lyme treatment guidelines:
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints.....
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy."
posted
Everyone reacts differently, but you are not even on what is considered a therapeutic dose of doxy at this point. Most LLMD's recommend double the dose you are taking.
It is good that your doc started low. But if you continue to backslide then you may need to actually consider increasing the dose of doxy sooner rather than later.
Personally I would not be in a big hurry to get a PICC line. I would want to know first what if any coinfections were involved and at least treat for bartonella for a few months or ehrlichia or anaplasma or rocky mountain spotted fever if you have any of those things.
If you can knock out any infections quickly then it will be easier to tolerate the herx from IV's plus the improvement may be longer lasting.
Of course if you have babesia that is a much longer treatment and could be combined with IV meds for lyme.
It is very hard to find combos that treat lyme, babesia and bartonella all at the same time and this seems to be one of the most common combinations of infections.
Also IV meds can be extremely expensive and you want that money to be put to the best use. The reality is that 28 days is the maximum coverage by the majority of insurance policies and for most people that is not enough. 3 months or 6 months or even a year is not unheard of on IV meds.
I feel it is better to know your options and be prepared before jumping into any treatment plan. Many also have success with IM shots which is another option to consider.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
she originally wanted to do the picc due to my neuro sx but since it was the week before the 4th holiday she wasn't comfortable being out of town ith me on IV abx.
I think I'm ready to try them. I can't hardly function with these symptoms at work or at home with my children. This makes me so irritable and out of it.
I am on vacation this week and will not get to do too much with my girls because I am so drained, and spacey. Sore and dizzy. Plux with doxy I can't even sit by the pool while they swim.
sorry this kinda turned into a pitty party for one. Any advice or wisdom appeciated.
one good thing out of all of this is my husband is starting to see a need for a llmd. Have to find one in Indy or close, he has family there and we could stay.
Posts: 53 | From IL | Registered: Jun 2011
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posted
I am with TF and Bea in this one. You have to push through the initial herx phases. It is likely you will need to add other agents over time to address co-infections which are in pretty much everyone these days with a bad case of lyme.
I switched from Bicillin shots to IV Ricephin for 5 months at a cost of about $8000 and just got worse. In hindsight I had a raging case of Babesia and everyone knows lyme is untouchable with active Babesia.
It was a total waste of money in my case. The Bicillin shots were twice as effective for neuro lyme and they cost 4$ a shot. They just need to be used in higher doses and at the right time. I use a double shot every second day for 2 weeks during the full moon now when my lyme is in the open.
It takes a lot of trial and error and attention to detail, and a lot more time than most people bargained for. Mark your calender with smileys or sad faces to easily track your lyme cycle and herxing. Also mark new symptoms which will inevitably appear as the co-infections start to stretch their legs.
You have to rest when the afternoon fog and crash comes, don't try push through it, if you can't sleep, just lie down in bed and close your eyes for an hour or two. Herx from day 3 is common, you have to anticipate and plan your life as best you can around it.
Your LLMD is the one to to know what is best for you, thats what you pay them for. Thats just my experience. I hope you get well soon.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I would not go with a picc unless it was a lyme doctor prescribing it. You want a real lyme expert to be directing your IV treatment, not a regular doctor.
Otherwise, the IV could end up being a complete waste of time and money.
As stated above, 30 days of IV is way too short a time--it's useless basically. (Lyme patients need to be on IV meds, and nearly all meds, for months at a time, not weeks.) So, if that's all your regular doctor wants to do, pass on it.
Wait for the lyme doctor to give you the strong meds to really hit these diseases. That way, you will get the most bang out of your buck and out of your IV.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Called my Dr today. She finally called me back and is telling me that since I am feeling worse on abx that I DO NOT have lyme. That I must have something else going on.
I am so mad. What else could it be??
I got off the phone with her and called a llmd. Their office was closed already so I will try in the morning again.
All this runaround is making me think I am crazy I am so frustrated and near tears. How can she say it is lyme and then change her mind when I progress on abx exactly as I should?? Ack!
So now I wonder how long I will have to wait again for treatment. I was only given enough doxy for 14 days. These neuro symptoms are really troubling me and making me scared that they may not go away the longer I wait.
Posts: 53 | From IL | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This has happened to us all. So, do not fear.
It was months before I got to see a lyme doctor after my primary gave me 30 days of doxy (for my positive lyme test) and REFUSED to give me any more when my symptoms came back when the doxy ran out.
I had undiagnosed lyme disease for 10 years before a doctor thought to test me for lyme. When I got that positive test, I thought everything would be fine. Nope. I had to be passed around to various doctors who yelled at me and did not believe I had lyme in spite of my test results. They all refused to give me even one pill of anything!!.
I had to suffer with the feeling of being stabbed by thousands of pins all over my body. Plus many other terrible symptoms.
I had to have my primary refuse to give me any more meds. Then, finally a person told me to contact a lyme support group to find a doctor to help me. Bingo!
So, what is happening to you is just par for the course. And, it does NOT mean that your symptoms will not go away.
All of mine went away after 10 years of being treated like I was crazy, depressed, told I let myself get out of shape, etc. etc. etc.
With this disease, you have no choice but to learn patience and to conquer your fears. It takes time, but you will get there.
If you still have amoxicillin, you could take that after the doxy.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Sadly, this isn't a unique story with what so many of us go through until we find a REAL LLMD that knows this disease.
As far as your picc question that I'm not sure is an option with the flip flop this doctor made, but I'm with the others.
If you are struggling with orals, you need to get this beat down a bit before you go with IV treatment. Otherwise you will proably herx worse than now.
But yes, you need a specialist first. Good luck to you. We are talking about our health and that is important, so LLMD is really the only way to go at this point.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Made an appt with a llmd for late Aug. It was the earliest they had but was put on the list for cancellations.
I will not be going back to my ID dr. What's the point? She told me yesterday to take 1-2 more days of the abx and if I still didn't feel well that she would be referring me to an endocrinologist since she didn't know what else to do.
Posts: 53 | From IL | Registered: Jun 2011
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I am so frustrated and near tears. How can she say it is lyme and then change her mind when I progress on abx exactly as I should?? Ack!
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