I went to my LLMD yesterday for the first time. She has doubled my dosage of doxy to 400 mgs per day.
Then next week I start taking 1500 mgs of amoxicillan for one week
Then the following week I start taking 3000 mgs of amoxicillan.
All together, by the third week, I will be taking 10 antibiotic pills per day for 30 days. This is a total amount of 3,400 mgs per day.
I don't know if my system can handle this. Oh...I also have thrush now from the 200 mgs of doxy that I am currently taking.
So, I have to add 4 more pills a day of aciphylius (sp?) for yeast. I'm sure I spelled it wrong but hopefully you know what I'm talking about.
That's a total of 14 pills a day (not including my blood pressure medicine I take twice a day).
I don't know if my system can handle all of this. I felt sick this morning just from taking 200 mgs of doxy for the first time(and broke out in a cold sweat).
The LLMD also told me that my mono has been re-activated by the lyme (I had mono 7 years ago)and now, because of lyme, it has come back.
Also, I'm still waiting for the results of my MRI of my neck. I saw a neurologist on Tuesday that told me everything was fine (I took him the films).
Then, yesterday, my regular doctor's office told me that they had the faxed results of the MRI and that everything was NOT okay but that the problem was not lyme related.
Now I'm waiting for the doctor to call me to tell me what's wrong with my neck..I'm scared.
Sorry this is so long (and goes off of the anitbiotic question) but I needed to vent...I have been fortunate enough to be healthy my whole life. Now everything seems to be falling apart.
Posts: 50 | From Virginia | Registered: Jan 2006
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I thoght Doxy and Amoxil interacted making the amoxil less effective?? They both work for me but I havent put them together because of this "interaction."
Did your doc not mention this to you?? Or maybe is not a big deal??
thanks,
CaliLymer
Posts: 215 | From CA, USA | Registered: Nov 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
hello,
Welcome to the board. I also had something show up on a neck MRI.
I have severly herniated discs in my neck. One duck said it was touching the spinal cord and i could be paralyzed at any moment....2 other ducks said i didnt need surgery.
Im NOT a dr, but i would suggest you get more then one opinion if they want to do surgery.
I know of some that had surgery and it set off their lyme even more. Of course if you are in pain surgery may help aliviate that.
Does your neck hurt? Why was the MRI ordered.
Doxy is harsh on the body. I could not handle 200mg. Try slowly increasing your dose..to see how your body will handle it. Many do better when they do this.
Hang in there, my body is falling apart too...one thing after another after another.
Let us know what the Dr says about your neck.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
It is scary enough having Lyme disease to have to take all those meds, hang in there! You will actually not be taking that much, relatively speaking. I took 3-5 different meds at a time over the course of 1-1/2 years, I would guess that a great deal of people on Lymenet have done the same.
400 mg doxy/day is the standard dosage for Lyme. Take your meds during a meal, it might prevent you from feeling sick. Don't take it with vitamins or antacids containing calcium and aluminum. I didn't take it with dairy products just in case.
Stay out of the sun if you can, while you're on doxy, and for 2 weeks after you stop it.
You won't be taking the amox and doxy at the same time, will you?
Make sure your LLMD sees the results of the MRI.
Good luck, P
Posts: 449 | From Vermont | Registered: Nov 2004
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No one mentioned the interactions of the meds, but thanks for letting me know because I will ask the doctor about it.
cantgiveupyet,
I lifted a heavy plant two and a half years ago. I have had neck pain on and off since then. I had an MRI two years ago that showed "very mild disc bulging at C5-6 level eccentric towards the left, but does not appear clinically significant".
Over the last year I have had numbness, tingling, lots of pain, fevers, etc.(my symptoms list is posted somewhere on this site). Originally the doctor ordered an MRI of my brain, neck, back, etc., but the insurance company denied everything but the neck.
Since I was diagnosed with lyme 2 months ago, I thought the neck issue was related to the lyme. But until I hear exactly what is wrong, I don't know. The doctors office did say that it was not related to lyme.
I don't want surgery, I'm just hoping that whatever is wrong will not get worse over time. I really wish the doctor would call me back NOW. The waiting is horrible.
As for the doxy, I don't think I am going to be able to handle it. I have been taking 200 mgs for 4 weeks now, 100mg in the am and 100mg in the pm.
This morning I took 200mg and I really felt sick to my stomach. I don't want to do this again tonight.
I don't know which is worse, the symptoms or the antibiotics.
Posts: 50 | From Virginia | Registered: Jan 2006
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Yes, I will be taking the doxy and the amoxicilan at the same time. By the third week I will be taking 10 pills (doxy & amox)and I'm supposed to remain on them for 30 days.
Posts: 50 | From Virginia | Registered: Jan 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
The waiting is tough, my nuerologist called and had me wait over a weekend until i saw him on monday...at which point he announced to the whole waiting room that i had a terrible herniated disc!!
The symptoms could be neck related could be lyme.
I once thought i had carple tunnel..my right wrist hurt a lot. Then i thought it was from my neck. I had an EMG done and my nerves were fine.
There is a symptom list under the newbie links, its very detailed you should take a look at it.
I just saw you had thrush from the doxy. Are you taking enough probioitcs? There is info on what you can do under the newbie link.
I was so bad on doxy, i couldnt eat for a week. My stomach felt full and i had to force food.
Have you tried some ginger tea? That helps sooth your stomach.
Maybe your LLMD can switch you to something less harsh?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi skbland. So glad you got in to see an LLMD!
I'm sorry doxy isn't agreeing with you. That's the way doxy treats people, unfortunately. Big YECCHH. It's frequently given first because it is really superior for knocking down the bacterial load, not to mention killing any erlichia it may find along the way.
I used to feel like I was going to heave-ho, only of course you can't, and you can't lie down, either, or else you might "ulcerate" your esophagus. So I wuold just slump into a big chair and wait out the nausea.
A decent meal first helps somewhat.
Know that doxy is not forever (thank heavens) and that other meds are much more easily tolerated.
A good bottle of "Theralac" (a probiotic ordered online) ended my months-long bout with thrush. One a day. Do a search here. There's nothin else like it!!
Buckle your seat belt for a bumpy ride! We're all here for you!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Tuesday was the first time I have ever seen a neurologist. He has ordered an EEG and a brain MRI. He looked at one film (I probally had about 7 with me). He did not look at it for a long time. He just said that everything looked fine...I guess he wasn't paying attention.
Last October, I thought I had carpel tunnel too. I went to the doctor and he actually yelled at me and told me that there was nothing wrong with me...I ended up writing the state a letter about him. He ended up apologizing for his behaviour.
It was not carpel tunnel though, I never found out what it was. The symptoms lasted for about 7 weeks then they went away.
I just thought it was a part of Lyme. Now, my upper left back/neck burns and tingles. It hurts to sit in a chair for any longer than an hour. I never thought "sitting" would produce pain, but in my case it does now.
I'm taking an over the counter pill (4 per day) for the thrush. It's something the doctor recommended.
I have lost 12 pounds (I needed to anyway) but I don't have any appetite. I'm sure its from the doxy. I try to eat "bland" foods. I switched from coffee to decaf tea in the morning. It seems to help some.
I'm going to call the LLMD once I hear the results of the MRI. I need to check on drug interactions by taking doxy and amox together.
I could ask to be switched from the doxy, but, since I have been on it I have actually been able to stay awake at night until 9:00PM. I used to get into bed at night at 6:30 or 7:00PM because I was so tired and felt bad, so I think it might be working as far as the tiredness goes. If the stomach issue gets worse though I'll probally have to change.
Posts: 50 | From Virginia | Registered: Jan 2006
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Thanks for the response....I definately feel the "bumpy ride"!
Posts: 50 | From Virginia | Registered: Jan 2006
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bettyg
Unregistered
posted
Hi Land, I feel for you; yes, this bumpy ride goes back to the old stage coach rides & all that dust, the robbers...we all know who they are right! LOL
You mentioned the drug interactions. Call your pharmacity since I hope you get ALL YOUR RX from same store!
2 wks. ago I had my major HERX reaction where this board came to my rescue & had local police check up on me. I called my LLMD next day .. to date NO return call or email which I sent with all the symptoms of my herx! In Iowa we have very few LLMD and they see 1 lyme patient/week!
Carpal tunnel, I've worn splints on each 20 years due to the pain. Neurologist tested me last year for diabetis neuropathy nerve damage; none, and NO carpal tunnel. My numbers weren't high enough.
EYE SENSITIVIES & NOIR, no infrared sunglasses info.
YES, I have what you have! Doxy made my extreme eyes 200% MORE sensitive than they we were earlier.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. www.noir.net or .com
If you call the 1-800 no. mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
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posted
The meds that are taken are not all that cut and dried as to which work together. Sometimes unexpected combos do work, so give this a chance.
When taking meds for the first time for lyme, you will often feel worse rather than better, because of the herxheimer reaction. Have you read anything in the newby links? Start with the treatment guidelines of Dr. B. Also read about probiotics and herxheimer reactions. You will need to change your diet too, to eliminate sugar and most carbs. These will make your thrush/yeast problems worse.
I had what appeared to be carpal tunnel as a symptom of lyme. It went away after a while, with no treatment beyond lyme treatment. So, be careful about assuming anything is not lyme related. There are a heck of a lot of lyme symptoms. Not saying you can't have more than one health problem at a time, though. That is one of the things that make lyme so hard to figure out.
Any word of whether you have co-infections?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I copied this from another topic in case you missed it...bumpy bumpy bumpy ride....
Here is excellent info about taking breaks and the slow Bb replication taken from the Jamsek Clinic website..they treat hundreds of lymies.
"Our treatment approach is designed for a Bb organism that is recognized as polymorphic and microaerophilic. Other important features of Bb biological traits are the capacity to exist in either an intracellular or extracellular state.
Finally, Bb has a tendency for latency and for slow replication a fact that has profound implications of the length of antibiotic therapy required for eradication.
The replication rate for Bb has been reported to be between 7 to 33 hours, depending on the environment used for culture and so forth. In contrast, Group A Streptococcus, for example, replicates every 20 to 30 minutes.
Current standards of treatment for streptococcal infections is 10 days, or around 500 reproductive cycles. Given these reproductive dynamics, and realizing this is indeed a crude but interesting analogy, treatment of Bb for 500 cycles could entail more than two years of therapy.
In summarizing all of these considerations, we have concluded that a treatment protocol employing long-term cyclic, pulse therapy with drugs effective against all forms of the organism might be effective, particularly if given in sequence with agents active against the cyst active form administered late in the cycle.
When oral therapy is employed, the idea of a ``drug holiday'' after pulsing seems attractive for several reasons.
First, it gives the patient some relief from daily antimicrobial therapy. Second, even though a typical holiday is scheduled for four weeks, most patients will relapse, or experience the recurrence of symptoms, within one or two weeks of therapeutic interruption.
This is particularly true in the early months of therapy, i.e. after only a couple of cycles. This pattern of relapsing provides useful clinical information for future treatment (see below).
Third, in theory, our treatment and the subsequent Bb ``die-off'', and then relapse off therapy is an approach that might stimulate immune recognition and activation, thereby improving immune surveillance/eradication of Bb.
This idea bears similarities to the auto-immunization theory that has received attention in HIV therapeutic strategies. That is, if one suppresses HIV with drug treatment, the CD8 cytotoxic/suppressor cell level wanes (these are lymphocytes responsible for activity against cellular pathogens, including HIV).
As treatment is withdrawn, the reappearance of the virus causes an augmented or boosted CD8 response that, if repeated cyclically, might build the response to the point that the pathogen could be controlled or eliminated by the immune system.
Our hope is that Bb specific immunity is retained in our patients regardless of severity or chronicity of the infection, and that interrupted therapy will be of some benefit.
Realistically though, this is a grossly oversimplified theory and a considerable amount of scientific work will be required to answer these questions. Regrettably, given the current medical and political circumstances for LD, meaningful clinical, epidemiological, and immunologic research are but a faint hope.
In the figurative sense, if there were a race to cure HIV and Bb (no judgmental view intended here), the HIV researchers would have a 20-year and a several billion-dollar head start, with the Bb folks falling further and further behind each year for the foreseeable future.
Perhaps the silver lining in all this is that all of the wonderful scientific information that has come from the HIV pandemic will benefit our understanding of many other diseases, including neuroborreliosis.
Obviously, our ultimate goal is Bb eradication, if possible, or at least a state of competent immune surveillance resulting in lasting relief from disease. As treatment progresses, return of symptoms off therapy becomes more delayed and symptoms tend to be milder.
On the occurrence of relapse in our cycle, the patient is given the option of resuming therapy at the first sign of relapse or they may simply wait until the four-week period is over.
Interestingly, during that first week or two on holiday, our patients invariably remark that they feel the best they have since becoming ill. Obviously, when a patient ceases to relapse on holiday, it is taken as a positive indication.
It is even more encouraging at that point if the patient fails to exhibit any sign of Herxheimer's reaction (see below) during the ensuing treatment cycle, suggesting that Bb die-off is clinically non-detectable.
In general, we have informed patients that therapy may extend for two or three years before they may reach an asymptomatic state."
I was tested for co-infections yesterday. I won't have the results back until next week. Will post the results once I get them back.
Bettyg,
I called the pharmacy. They said that normally you do not take doxy & amox together, but to check with my doctor because it's being done for a reason.
I read the post where everyone was concerned about you and the police showed up. I'm glad that you are okay. It's nice to know that people care!
Posts: 50 | From Virginia | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Skblaqnd
Very important:
Remember to space your abx 2 hours from your probiotics. Because if you don't the abx will kill off the good flora in the aphodophlis you are taking.
A good refridgerated MULTI- strain formula is the best.
And People here have positive reports taking Theralac. One per day.www.theralac.com
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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quote:Originally posted by vitch: Taking a zillion pills plus vitamins and supplements etc is part of being a Lyme patient.
Yep! At one point in my treatment I was taking 90+ pills a day! Lots of supplements!
here is more info on the yeast. You will need to follow a yeast-free diet or you will suffer needlessly and may later be "free of Lyme" but have "Lyme symptoms" [which could actually be from yeast]
Hang in there, the ride will get very rough. Once you are allowed to stop the doxy, you will probably feel a bit better. Let's hope!!
posted
Regarding the neck problem. I had a stiff, creaking, cracking neck for a very long time when my symptoms first started in the early 90's. This improved with antibiotics.
In 2002 I had a spontaneous disc herniation c-5/6. It was the exact same location as the cracking neck earlier.
In 2005 I had neck surgery in the same area diskectomy, fusion, plate after my legs went weak. I had a couple treatments with steroids.
Then whammo!! after surgery, all my horrible symptoms from the early 90's returned. Now I'm a mess. Be careful.
Posts: 340 | From Ohio | Registered: Oct 2005
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