posted
Hi - I finally have been diagnosed with lyme. Whoo hoo, I guess.
Anyway, I am prescribed tetracycline 250mg twice a day for a week moving to 3x a day from then on. Last night before dinner, I took my very first dose.
This morning I woke up with the most amazing stiff neck. I have surfed thru past posts about stiffness, but it is not clear if it is a prior lyme symptom or something that comes on after treatment.
Is the stiffness a side effect of the tetra itself? Or is it a REACTION (i.e. herx) due to treatment? Or both?
thanks
Posts: 36 | From Boston, MA | Registered: Sep 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
stiff neck seems to be a lyme symptom and a herx for us. Heat helps. Hang in there.
Posts: 1230 | From US | Registered: Nov 2005
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Marnie
Frequent Contributor (5K+ posts)
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posted
Touch base with your doctor.
I never like to hear about a stiff neck. Could indicate a serious problem.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Marnie... any clue as to what kind of serious problem. So far I have a "it's a LD symptom" and a "you may be in trouble"
Posts: 36 | From Boston, MA | Registered: Sep 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
It is always best to call the office when something different happens. Could call the druggist too.
Yes, it could most likely be a symptom or a herx, but it is best to check. Then you will have a better idea if it happens again.
Posts: 1572 | From Pa | Registered: Jun 2001
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
In my not so humble opinion, I think the tetra is killing Lyme probably attached to your cells around the brain. The confluence of the sinuses is on the right side of the back of the skull (near the right ocipital bone) and is a notorious place for pain (as is the right side of the neck) during die off. I think you're having a true herx.
Tetacycline is a good Lyme drug- Lyme isn't supposed to be able to morph into the cyst form in the presence of tetracycline - so it can kill the classical form.
I had a terrible stiff neck, and head ache after my first few doses of abx- and had to suspend the abx for a few days after DAY ONE of taking abx...
johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
I've gotten the stiff neck symptom also, but mostly after ending a chelation round of alpha lipoic acid..... As Marnine says, discuss any symptoms with your LLMD. - JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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posted
true herx effect due to tetracycline.
Posts: 2708 | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
A frequent Lyme thing for me. Worse when I was worse off (I'm nearly better now.) Often so bad I could hardly turn my head at all. However, I also had DX of neuroborreliosis -- brain lesions, headaches, etc.
If you have it a LOT I would make sure to have a brain MRI. In association with a new med, it does sound like a herx to me.
Let your doc know and keep tabs on it. Hope it lets up soon, it's not fun.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I would never suggest not to contact your doctor if you feel something abnormal, but for me, a stiff neck and upper back / shoulders was a serious issue for about 2 weeks after I started treatment.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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JimBoB
Unregistered
posted
I had a very stiff and SORE neck for weeks BEFORE I started the herbs and now Tetracycline. I didn't write it down, so can't remember IF the sore neck was gone for sure BEFORE I started taking the Tet a week ago or not, but think it was.
posted
I forgot to add: Since I started taking the tetracycline, the soreness has come back in the tendons behind the knees and other places. It was pretty well gone before. But I will continue as I have decided, till I am done with my regimen, and see what all of this has done to or for me. Jim.
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posted
Thanks for the replys. I have contacted my LLMD, but I posted because you know doctors - sometimes a reassuring post/reply if faster than the doctor's call.
Thanks - as of today (I am 4 doses into the tetra) It seemed like last night the neck was the same and had expanded into my back a bit. This morning, it is just my neck again. No worse than yesterday.
Posts: 36 | From Boston, MA | Registered: Sep 2004
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posted
I would without a doubt say it is a small herx. I started on Tetra almost a year ago and within the first 24hrs had jaw pain and stiff neck. It proceeded to become more intense and within 5 weeks i was bedridden for 6 weeks. Dr. D believes I have had Lyme most of my life. This being said, it may have caused my reaction to be far worse that anything you will have to experience. If you have had it long-term buckle-up! It could be rough. Although it the long run it will be worth it. I would say I am now back to about 80% and continue to see improvement.
Take care and peace,
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
If it had been this...you would be a LOT worse now! Glad to hear you are NOT feeling worse! Obviously it is NOT a symptom of a far more serious immediate problem.
I was concerned, but did not want to alarm/scare you.
Go here:
backandneck.about.com/od/neckpain/ht/menruleout.htm
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Today's update... It's been 5 days on tetracycline twise a day. My neck is still sore, is no worse, is no better. It's a livable soreness, though my friends and family can notice that I am stiff.
I am VERY curious to see what happens when I goto thre doses a day. I think that'll be this Thursday.
feesher
Posts: 36 | From Boston, MA | Registered: Sep 2004
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JimBoB
Unregistered
posted
Is it NORMAL to go to THREE doses a day of the Tet?
posted
i dont know what is normal but my doc prescribed me to take 500mg three times a day or 750 twice a day, whatever works out better, i have not yet started so i am a bit nervous to herx too hard.i get it filled tommorrow. so i guess the answer is 1500 mgs. a day or more.
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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posted
Here's a thought that you may or may not want to consider, depending on how well you can tolerate needles. One of my docs gave procaine (an anesthetic) to inject just below the skin when I have intolerable pain, usually neck and shoulders. It should never be injected in the spine, but everything else is fair game, since the needle is so short. I don't use it that often, but when I can't get off the heating pad, I know it's a procaine day.
Good luck and remember to follow your instincts. You're the expert on you, not someone else!
Posts: 40 | From Arizona | Registered: Dec 2005
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JimBoB
Unregistered
posted
WOW, 1500 a day.
BOY, I am only doing one third of that. I am going what my duck has prescribed in the past for other things.
Do others on this list concur with the 1500, or have you all been precribed more or less?
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Jim, I take Ceftin not Tetra, but I take 2000 mg a day (as prescribed by my LLMD).
That's a dosage that increased over time, similar to the schedule freesher is on.
I had nasty herxes during my first two months -- one of which landed me in the ER. I had been told things could get worse before they got better...and that turned out to be true.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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JimBoB
Unregistered
posted
Thanks.
IS Ceftin a later version of Tetracycline?
I upped my regimen from 500 to 750mg today. But don't think I will go any higher as I can NOT afford to end up in the ER, with no insurance nor any money to speak of.
EVERYTHING is self treatment here not being able to afford an LLMD and with local duck not cooperating at all in this.
posted
It is great seeing some people having at least some success with an old, very inexpensive and widely available drug like tetracycline.
Like it or not, this whole Lyme Disease controversy, attacks on Doctors and all, is about money. Academic arrogance is involved, but the root issue is money.
At this point I don't think it matters to the goons that are going after our Doctors whether treatment is costing $25 a month of $25,000. They don't want it diagnosed and they don't want it to be treated. Period.
At an earlier point though, if Lyme treatment was associated with long term prescriptions of a dirt cheap common drug like Tetracycline, it would be no more controversial than Acne.
NOBODY cares about tetracycline. There is little worry about promoting bacterial resistance with it, as it is on the bottom of the pharmacutical totem pole.
Poultry farmers can go down to their local feed store and purchase all the 5 pound plastic buckets of tetracycline powder for their birds that they need.
Unfortunately Rocephin costs alot more than tetracycline, and rather than researching more cost efficient ways of treating it... and paying for what treatment has been found to work until then... they have sent their goon squads after our Doctors.
Congratulations to those of you having success with medications that even chickens can afford.
In a perverse sort of way you are at the leading edge of third world medicine in a first world country.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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5dana8
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Member # 7935
posted
My first herx symptom is almost always a stiff sore neck.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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JimBoB
Unregistered
posted
MAYBE WE are in our OWN little third world HERE???
posted
To recap, I am still on 2x250mg tetra twice a day. I am scheduled to goto 3xday today, but I am going to start the 3 doses tomorrow (Friday), just in case I feel yucky. I have the weekend to adjust.
So far my stiff neck has diminished to almost nothing.
feesher
Posts: 36 | From Boston, MA | Registered: Sep 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
JOSEPH J. BURRASCANO JR., M.D.
ANTIBIOTIC CHOICES AND DOSES ORAL THERAPY: Always check blood levels when using agents marked with an *, and adjust dose to achieve a peak level above ten and a trough greater than three. Because of this, the doses listed below may have to be raised.
Consider Doxycycline first in early Lyme due to concern for Ehrlichia co-infections.
*Amoxicillin- Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are often needed Pregnancy: 1g q6h and adjust. Children: 50 mg/kg/day divided into q8h doses.
*Doxycycline- Adults: 200 mg bid with food; doses of up to 600 mg daily are often needed, as If levels are too low at tolerated doses, give parenterally or change to another drug.
*Cefuroxime axetil- Oral alternative that may be effective in amoxicillin and doxycycline failures. Useful in EM rashes co-infected with common skin pathogens. Adults and pregnancy: 1g q12h and adjust. Children: 125 to 500 mg q12h based on weight.
Tetracycline- Adults only, and not in pregnancy. 500 mg tid to qid
Erythromycin- Poor response and not recommended.
Azithromycin- Adults: 500 to 1200 mg/d. Adolescents: 250 to 500 mg/d Add hydroxychloroquine, 200-400 mg/d, or amantadine 100-200 mg/d Cannot be used in pregnancy or in younger children. Overall, poor results when administered orally.
Clarithromycin- Adults: 250 to 500 mg q6h plus hydroxychloroquine, 200-400 mg/d, or amantadine 100-200 mg/d. Cannot be used in pregnancy or in younger children. Clinically more effective than azithromycin.
Telithromycin- Adolescents and adults: 800 mg once daily Do not need to use amantadine or hydroxychloroquine So far, the most effective drug of this class, and possibly the best oral agent if tolerated. Expect strong and quite prolonged Herxheimer reactions. Must watch for drug interactions (CYP3A-4 inhibitor), check the QTc interval, and monitor liver enzymes. Not to be used in pregnancy.
*Augmentin- Standard Augmentin cannot exceed three tablets daily due to the clavulanate, thus is given with amoxicillin, so that the total dose of the amoxicillin component is as listed above for amoxicillin. This combination can be effective when Bb beta lactamase is felt to be significant.
*Augmentin XR 1000- This is a time-release formulation and thus is a better choice than standard Augmentin. Dose- 1000 mg q 8 h, to 2000 mg q 12 h based on blood levels.
Chloramphenicol- Not recommended as not proven and potentially toxic.
Metronidazole: 500 to 1500 mg daily in divided doses. Non-pregnant adults only.
PARENTERAL THERAPY
Ceftriaxone- Risk of biliary sludging (therefore often Actigall is co-administered- one to three tablets daily). Adults and pregnancy: 2g q12 h, 4 days in a row each week Children: 75 mg/kg/day up to 2g/day
Cefotaxime- Comparable efficacy to ceftriaxone; no biliary complications. Adults and pregnancy: 6g to 12g daily. Can be given q 8 h as divided doses, but a continuous infusion may be more efficacious. When exceeding 6 g daily, use pulsed-dose schedule Children: 90 to 180 mg/kg/day dosed q6h (preferred) or q8h, not to exceed 12 g daily.
*Doxycycline- Requires central line as is caustic. Surprisingly effective, probably because blood levels are higher when given parenterally and single large daily doses optimize kinetics of killing with this drug. Always measure blood levels. Adults: Start at 400 mg q24h and adjust based on levels. Cannot be used in pregnancy or in younger children.
Azithromycin- Requires central line as is caustic. Dose: 500 to 1000 mg daily in adolescents and adults.
Penicillin G- IV penicillin G is minimally effective and not recommended.
Benzathine penicillin- Surprisingly effective IM alternative to oral therapy. May need to begin at lower doses as strong, prolonged (6 or more week) Herxheimer-like reactions have been observed.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
The dose of tetra that was most effective in my treatment was 1 gram twice a day. (2 500mg tablets twice a day). I saw some pretty substantial improvement in my neurological symptoms at this dose.
Apparently tetra (and doxy as seen in Dr. B's guidelines) is most effective when given in larger doses less times per day. For example, 750mg twice a day is better than 500mg three times a day according to my LLMD.
I also found that name brand tetracycline was MUCH more effective than generic. I believe that the name brand is tablets - Sumycin.
Good luck!
Posts: 98 | From MA | Registered: Dec 2005
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posted
yes this is the tablet i picked up yesterday at the pharm. i start today and i am hoping for the best. i have been off meds all week and feel better than i have in a while. dont even want to start back but know i have to. i asked DR.P about combos and other abx after being on this site because it sounds like the majority of people are on other things besides doxy and tetra but he said he did not feel confident labeling me with chronic lyme and he felt that this was the next step.hope it works and does the trick. I dont have any ins. and the money is running out real quick.
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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posted
Have those of you on tetracycline had any problems with nausea or having it tear up your stomach in any way?
I have been on docycycline before and it gave me uncomfortable nausea sensations, even if I was very careful to take it with some food. I think the directions with doxy are to take it on an empty stomach for best results, but that was totally out of the question. I called it 'The Doxycycline Weight Loss Plan'.
My understanding is that it is much more important with tetracycline to take it an hour or so away from food... Have you been able to tolerate this?
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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posted
Anyone know what the difference is between tetracycline and doxy? It seems like tetra used to be used awhile back and then doctors were switching to doxy because it was supposedly better?
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by James H: Have those of you on tetracycline had any problems with nausea or having it tear up your stomach in any way?
I have been on docycycline before and it gave me uncomfortable nausea sensations, even if I was very careful to take it with some food. I think the directions with doxy are to take it on an empty stomach for best results, but that was totally out of the question. I called it 'The Doxycycline Weight Loss Plan'.
My understanding is that it is much more important with tetracycline to take it an hour or so away from food... Have you been able to tolerate this?
I was like you James wanted to through up never did and pressure in my chest after taking doxy.You know how I got rid of that"
I drank a extra glass of water evertime I took it.And took double the amount of acidophilis really made a differance took a week though.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I feel naucious after taking my pills, including the Tetracycline. I upted it to 750mg yesterday, and today I had my first stiff and sore neck for several weeks. Jim.
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by JimBoB: I feel naucious after taking my pills, including the Tetracycline. I upted it to 750mg yesterday, and today I had my first stiff and sore neck for several weeks. Jim.
JimBoB man its a must you have to drink lots of water with the *cyclines I remember when I was a kid I had tetra and it gave me heartburn and pressure so bad i thought i was dying, doxy does it too but when I drank lots of water it backed off the first week was the worst but if i remembered to keep drinking water it cut it down and dont eat within 2 hrs of it that made it worse for me.
ps I hope that your 750mg is spread out over the day? and remember acidophilis 2 hrs after too.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by JimBoB: I do drink quite a bit of water these days, especially since my illeostomy ten years ago, or I get dehydrated real fast.
You mean I am NOT supposed to take the Tet with my meals?
I keep forgetting to take my acidophilus because I take it two hours or so after my meal, but then forget a lot as I get busy on the house project.
Yes, I just take one 250 capsule with each meal.
I normally only eat two meals a day, but have had to stretch it to three with all these pills. I take 23 pills with each meal.
Jim.
within 2 hrs of it that made it worse for me.
When I ate something it seemed to make it worse for me? You dont have to try it everybody is different in some things.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Quick update... To recap, I had started tetra twice day and had the stiff neck right away. It was pretty darn stiff, but I wouldn't call it debilitating or anything. By the end of week 1, the stiff neck had nearly gone away.
On Friday, I moved up to 3 doses a day. No changes on Friday, Sat, or Sunday. Sunday night I had weak and aching knees, ankles, and feet. In the past, I have had aching knees, but the ankles and feet were odd for me.
As of this morning (Monday AM) the knees are better.
It's weird because on one hand I am glad that I am not getting my butt kicked with reactions. But on the other hand, the butt-kicking would give me more confirmation that the antibiotics are taking the right action. Then again, I am only 10 days or so into treatment, so I assume I should just be patient and my time will come.
feesher
Posts: 36 | From Boston, MA | Registered: Sep 2004
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JimBoB
Unregistered
posted
feesher:
IF you are taking Sarsaparilla, Milk Thistle, and Acidophilus, you will have not only LESS herxes, but milder ones.
You MUST get die-off out of your body to feel better, and the quicker you do it, the better you will feel. WHY suffer needlessly? Jim
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posted
Been in Telithromycin (Ketek) for a couple of months now. Suddenly in the last 24 hours my stiff shoulder muscles turned painful. Motrin helped during the day and at bedtime I took the prescription pain med. I'll try the heat pad today (as stated in this thread, ice didn't help much).
Is it common for a symptom like this to just pop up suddenly? The muscle never actually hurt until now and the pain started like all my other lyme symptoms - right side first, then left began aching this morning. Babs didn't show up when I was tested - could that mean that maybe it just wasn't active?
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