I just keep getting worse. Shouldn't I see something by now? I'm really starting to wonder if Lyme is really my illness.
This is all so scary, to be totally disabled and not know what will happen next.
Posts: 748 | From Texas | Registered: Feb 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sam, I am finding this medication log very difficult to understand. For example, for January, is it saying you took Bactrim the first 5 days, then about 10 days of doxy, then back to Bactrim?
You took basically nothing in March?
You finally started a cyst buster in Sept. 2015--8 months after starting treatment?
If so, this isn't good treatment, my man.
Also, we need to know dosages of these meds. Just the names and days you took them isn't sufficient to decide if your treatment is good or not.
What are the "h" and "x" and numbers? Sorry, just can't understand it without some code.
A doctor needs to put you on a cyst buster along with a med that kills the spirochete form of lyme simultaneously. You don't make any progress until you do that.
I have seen many lyme patients waste years with doctors who gave them inadequate treatment. The only way to avoid that is to STUDY the Burrascano Guidelines and then go find a doctor who lines up with the Guidelines.
That means, giving the meds Burrascano says, the combos Burrascano says, the dosages Burrascano says, and for the length of time Burrascano says.
I wasted 2 years with a doctor who gave me inadequate treatment. Then, I wised up, studied Burrascano, even went to hear him speak, and then dropped that doc and got one who followed what Burrascano said to do. That is how I got rid of lyme, babesiosis, and bartonella over 10 years ago now.
The doc is the key. Can't emphasize that enough. The doc is the key to getting rid of this horrendous disease.
If your doctor is in Texas, I expect he is not giving you adequate treatment.
If you can possibly fly to Maryland, there is a doctor here who follows Burrascano. He is treating a number of Texas patients.
After the first in-person visit, you can do monthly telephone or Skype appointments with him. So, you will not have to travel much at all.
posted
Yeah, you're pretty much reading the log right. I actually started Bactrim before I was diagnosed with Lyme for something else, and since it seemed to help me somewhat my PCP was kind enough to keep me on it.
I got the diagnosis in Feb. and my first LLMD added Cefzil in. Major herx (or so I think).
I was told to stop abx until the "herx" went away, so that's why no abx in March. It never went away, so I just started taking them again anyway. I didn't have the same reaction when I started them back up.
I started using numbers in my log later on to indicate how many of a particular pill I took in that day. Doxy pills are 100mg, rifampin 300mg, Cefzil 500mg, ceftin 500mg, flagyl 250mg, Bactrim is DS, mino is 50mg. Some of the daily numbers are incorrect, as I actually wrote a program that reads my logs and generates this for me, and it has some glitches still. 'h' is half a pill. 'x' just means I took it that day but didn't log the actual amount.
I believe I've seen the doc in Maryland you mention already. He put me taking mino, Bactrim, rifampin, and Cefzil for that one week in August. He also did a skin punch biopsy and wanted to put me on ivig.
I followed up with him after the skin punch biopsy results came back two weeks later (which were negative), and he decided against the ivig and decided to change abx again.
I was getting the impression that he would need to see me in person every two months, and I'm too sick to fly. I can't even sit upright in the car. It took us a whole week to get there and back. The trip was pure torture, and if I were to see him every two months I just don't think I could do it. He was an excellent doctor, though.
The doc I see now is in Louisiana. He calls Burrascano the Lyme guru and follows his guidelines. Unfortunately he had an accident and I wasn't able to see him for a couple of months, which is how I ended up in Maryland. It was a head injury, so I'm hoping it didn't affect his thinking too much.
He wants me on 400mg minocycline daily, to continue upping the flagyl to a max of 750mg 3 days a week, back on Bactrim DS 2x daily (since it is the drug that helped me the most), I'm going to take streptomycin for 2 weeks (I'm Brucella positive), and after the two weeks I'm going to start Cefzil again, since that's the one that's made me herx the hardest so far.
I dunno, I appreciate any and all advice (even forceful advice, I don't mind being told what to do!). I just gotta get better somehow.
posted
Dr in LA is a very good one, if you are seeing the one that has his office like in a country house (no names).
Posts: 532 | From Texas | Registered: Oct 2004
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posted
Yes, in the country house he's not shy about using large doses and even had me on IV for a short time before his accident.
I'm hoping he is able to figure this out. We really like him but he says he's never seen anyone with severe chest pressure like me. I guess that concerns me, since it is my disabling symptom, keeps growing, and no one can figure out the cause.
Posts: 748 | From Texas | Registered: Feb 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Hmm, with the chest pressure - have you ever been tested for chlamydia pneumonia? mycoplasma?
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
I tested positive for chlamydia pneumonia I think. The doc in Maryland said that everyone does though and that it was insignificant. I've heard so many different things from so many different docs, some of them really good docs...
It's more of my heart that hurts and has pressure, though. Every heartbeat is painful.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
Severe chest pressure and heart pain was Babesia for me. It was horrible. So sorry you're in such a bad place, SickSam :-(
While Bactrim hits Babesia, it seems you're not really targeting Babesia with your meds.
Have you tried Buhner herbs? Sida acuta? Cryptolepis?
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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posted
I haven't tried the Buhner herbs yet. Which infection would have 6-8 day cycles? That's Babesia isn't it?
When I wasn't too sick to pinpoint my cycles, that's how long they were. Bactrim helped significantly at first. Maybe it is Babesia. But then Malarone for a month didn't seem to do anything...
Then again, the only herx I think I've had was on cefzil, maybe a small one on doxy in January... And cephalosporins only hit Lyme, right?
Sorry, just thinking out loud. My hands also turn white and blue, so I'm pretty sure my biggest infection lives in my endothelial cells. Which could be many of the confections...
I just figured doxy and the cephalosporins would've done something by now if Lyme were my big problem. Rifampin didn't seem to do anything either, although I did have one week if improvement in June while on Cefzil, doxy, and rifampin. But once I switched Cefzil to to rocphin the mild improvement was totally lost. Not sure if that was just coincidence or not.
Does treatment just take this long to see anything? Do you just keep getting worse in the meantime? Or do you all think that maybe I'm targeting the wrong thing?
Posts: 748 | From Texas | Registered: Feb 2015
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posted
Regarding the heart ... Has a cardiologist considered a hole in the heart? I don't know what symptoms it would cause but I know there's ONE special test to check for a hole that can be on the back of the heart.
Scary, I know.. but ask your cardiologist about it.
Here's one link .. I have to leave the house now.. but google some more.
posted
I do have one of those. Mine is a PFO. Two cardiologists have looked at mine and say that mine's too small to be concerned about.
And in addition to the pressure, it is also like my heart is rubbing against sand paper every time it beats, so I think it's probably inflammation around my heart. In the beginning I really blamed the PFO for all my problems, but then the sandpaper-feeling developed and grew. And then my whole body started feeling like a bucket of acid had been dumped on it...
Posts: 748 | From Texas | Registered: Feb 2015
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posted
UGH!! They may not have checked for one behind the heart though. A friend of mine kept going to the ER ..hundreds of times .. before they finally ran a special test that you have to be knocked out for? I wish I could ask him but he just moved and is not in good shape.
The sandpaper thing sounds awful. Are you sure you're not exposed to chemicals or ingesting them?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Wondering if your liver support may need to be reassessed. And, the dose and frequency of magnesium might need a change, too. Details:
Topic: MAGNESIUM - Informational Links set -
Posts: 48021 | From Tree House | Registered: Jul 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Sam, I don't know if my chest pain issues were quite as you are discussing, but what I had was SOOOO painful.
It felt like a vice grip was around my chest. It was SO crushing.
They ran me through all the usual heart tests, all the way down to giving me a heart cauterization but when they couldn't find anything, they chalked it up to anxiety.
I was searching for five years to find out what kept putting me in the hospital with massive pain in the chest, since anxiety meds were NOT helping.
They then said it must be pleurisy although there was no test and probably just a word to get me out the door, but I was in PAIN.
But what FINALLY fixed it was treating for Babesia. I know that Nula mentioned that to you too.
I had Lyme, Bartonella, and Babesia but in the 5 1/2 years of treatment, the Babesia was the most painful AND the hardest to get rid of for me.
It was SOOO many rounds of mepron and cipro and then swapping to a bunch of other herbals and whacky prescription meds that I'm forgetting the names of right now, but then back to Mepron and cripo over and over and over.
BUT I'm here to say that I did get out of the hole. No more Lyme and co pains and I'm living a normal life again.
I know it is so hard pushing through all of this when you are in pain. Have you tried soaking in an Epsom salt bath? That would settle pains down for me sometimes. Hang in there and keep fighting.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Lymetoo, that sounds terrible! Hope I don't have one of those. Definitely no chemicals of any kind.
Keebler, thanks for the thoughts. I might need to look at the kidney stuff.
tdtid, thanks for sharing. That really encourages me. I wonder if Babesia is in there somewhere...
Sorry to be so short in my reply and for it taking so long. Since Friday night I'm super weak and really out of it. I started taking mino instead of doxy, but it didn't do this to me before, so I don't know what's wrong with me. I've never been this out of it before...
Posts: 748 | From Texas | Registered: Feb 2015
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posted
I was on malarone, Bactrim, and Zithromax a little over a month and didn't see any improvement, and the doc said if I had Babesia that something should've happened during that time. I dunno though, I still wonder...
Posts: 748 | From Texas | Registered: Feb 2015
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Judie
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posted
I got very ill on mino and couldn't function.
Bactrim isn't good if you have sulfa problems.
Posts: 2839 | From California | Registered: Jul 2012
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I need to stress that we aren't doctors. Just patients that have walked through many of these obstacles.
With that said, as a patient, I know for me personally, I had no reaction and got no where with Malarone.
I know other patients that have done amazingly well on it, so it just seems to be about the right drug for the right bug.
Malarone does have mepron in it but yet when I was on the "yellow paint"(mepron), it was just totally different for me.
I wish I had answers for you, but everything seems so very complicated when we are so sick but don't know what is going on inside our bodies.
I do relate to your feeling of pain, being disabled, scared, and just wanting someone to know how to help you. I was blessed and hope that your doctors can help you get out of this hole.
Please keep us posted. We care!
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Thank you, tdtid and Judy. I really appreciate all of you caring. I've heard others say that about Malarone too.
So far the only thing that has ever helped is Bactrim. I guess I'll try the mino, Bactrim, cefzil, flagyl combo (+ streptomycin for two weeks) and see what happens. Hopefully something good.
I really appreciate everyone's input very much.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
You all are awesome btw. You have helped me find great doctors and have given me excellent insight. Without you all I don't know how I would have found treatment!
You are certainly making a difference and I can't wait to be on the other side of this fence helping others along.
Posts: 748 | From Texas | Registered: Feb 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Babesiosis flares in weekly cycles. Mine would hit exactly every 7 days. Flare lasted 48 hours.
I got rid of babs by taking Bactrim DS for 11 months with artemesinin during the flares. As soon as my doc added the art, the flare went down to nothing.
I hope you can get some at the Vitamin Shoppe and try it. Start taking it right before you expect the flare. It worked like a miracle for me. My flares became nothing to write home about once I added the art.
Burrascano says art should be added in all cases. (p.24)
Take it on an empty stomach twice per day. I took it from Friday morning until Sunday evening because my flares were from Friday evening until Sunday evening. Do NOT take the art every day of the week.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, I had forgotten you had told me about the art before. I didn't check too much further into it back then because my doc moved away from Babesia treatment, but now that I'm back on Bactrim I'll sure check it out. I'll have to order it online though. I couldn't get in a store if I wanted to. My wife has to do everything for me.
Is Bactrim DS 2x daily pretty much the standard Bactrim dose?
Posts: 748 | From Texas | Registered: Feb 2015
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posted
I wonder if it would hurt to throw in the Buhner babs herbs too? That might be too much though...
Posts: 748 | From Texas | Registered: Feb 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Twice per day is how I took it.
It is not the best treatment for babs, but I could not take Mepron/zith, so that is what I had to use to get rid of it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I took many many rounds of clindamycin and quinine (not the best route, probably) .. but I finally killed out the babesia by taking art and zith for less than 2 months. Bingo, it was gone.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Lymetoo, that's what I'm praying for, that we could find the right combo then bam! It'll be improved!
Sorry, just a couple more questions: is there a particular source of art that is good? Does it generally take a couple of months to be able to tell if something's working?
Posts: 748 | From Texas | Registered: Feb 2015
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posted
Allergy Research Group is what I used. Very good brand.
Be sure to take it with a macrolide like zith so you don't build up resistance. It can begin not working then.
It may take a few months.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I also used Allergy Research Group. The art worked in less than a day in my case.
Instead of having my horrible babs flare start on Friday evening and make me miserable for 48 hours, the art caused the flare to be just a few hours on Saturday and VERY mild. So, it really was like a miracle. It was unbelievable!!
As I said, I took it with Bactrim DS only, so I only took it each Friday through Sunday. It is my understanding that if you take it continuously, then in about 2 weeks your intestines will make an enzyme that inhibits the action of the art, so it becomes useless.
So, my doc had me take it only to encompass the scheduled flares.
Posts: 9931 | From Maryland | Registered: Dec 2007
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![[Smile]](smile.gif)
he's not shy about using large doses and even had me on IV for a short time before his accident. ![[group hug]](graemlins/grouphug.gif)
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