posted
I haven't posted to the board in quite awhile, but I really need your help. Some opinions would be great.
I first got Lyme in 2001, spent 17 months on IV Rocephin, then 2 years on oral abx, then 2 years maintaining my health with alternative medicine (kinesiology and whole food supplements).
About 7 weeks ago I got colitis and was given Flagyl/Cipro for it. I hadn't taken an antibiotic in over two years.
Within 3 days of starting the Flagyl, I got a massive herx. It had been so long since I had a herx, it took me several days to realize that's what it was. Many times over the past weeks I felt like I was dying.
Since then I have switched alternative medicine providers, started on Amoxicillin and small amounts of Biaxin, and have gone nowhere but downhill. I lost over 30 lbs (down to 125) and am so weak I can barely leave the house. My new alt practitioner is using Teasel and Lyme Tincture.
Does anyone understand what the Flagyl might have done? Did it break open the cysts and "re-seed" the Lyme, or was it just doing its job and killing everything? I'm having panic attacks, paralysis in my right side, terrrible pain everywhere for weeks now, is it time to go back on Rocephin???
Best,
- Andrew
Posts: 443 | From The Wild West | Registered: Jan 2002
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Go see your LLMD Andrew-!!!!!!!!!!!!!!!!!!!!!!! Yes, it sounds like you need abx- and IV- it sounds like you have newly re-emerged tertiary Lyme- tertiary often goes after muscles- weakness & losing weight??? GO SEE YOUR LLMD. Those are symptoms that point to potentially life threatening problems- you need expert medical attention- Very sorry to read things are so hard- Best wishes, Sarah in Santa CRuz, CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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ByronSBell 2007
Unregistered
posted
sounds like massive die-off to me , guess you didn't kill it all.
I had been un-diagnosed with lyme for about 2 years and was given 500mg of doxy cycline for an ear infection. I herxed Soooooo HARD! I didn't know what was happening at the time but it felt like death and I was ready to put a bullet in my head.
Doxy doesn't really cause big herxes as other ABX do so I can't imagine what it was like to take FLAGYL!!! that is the worst with herxes. My LLMD has had reports of patients herxing for a whole month after one dose of flagyl and some end up in the hospital. When this happens he prescribes a baby dose of prednisone to calm the immune system down until the toxins can get out.
Have you ever done a glutathione IV before?
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posted
The problem now isn't the herx I had - the problem is that it was almost 8 weeks ago... and I spent all this time with an alternative medicine person who said the Lyme was going down - meanwhile I got sicker and sicker.
Now I am extremely weak, almost a skelton, keep eating but can't put on weight. I'm terrified.
But I still don't understand what the Flagyl did - could it have caused the Lyme to get worse instead of better? I was on a massive dose (2 gm/day) but only for 6 days.
Many thanks for any replies,
- Andrew
[ 11. May 2007, 12:08 PM: Message edited by: AndrewInCA ]
Posts: 443 | From The Wild West | Registered: Jan 2002
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posted
Rocephin CREATES cysts and flagyl kills them. Did you not take any flagyl while on Roc??
I think you had tons of cysts to kill = massive herx.
As for the colitis....could you have undetected celiac disease??
I pray you'll call your LLMD and get back on the right path.
Andrew
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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ByronSBell 2007
Unregistered
posted
2G a day!!!! HOLY, How did yo even survive? Some people die from severe herxes! Dang....
As for putting weight back on, I have that problem too, I have lost about the same weight you have (was 185 now 160 almost) but I have chronic nausea so that is what keeps me so thin... I have recently started taking alot of natural digestive enzymes and that has helped my digestion greatly and have put on a couple lbs. without even adding in more calories.
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posted
I took Flagyl when I was on Rocephin years ago, but haven't taken it in a long time.
I understand that Flagyl breaks cysts and that cysts can be created while on Rocephin.
What I'm concerned about now is the spirochetes multiplying out of control as we speak.
What's the current thinking on Rocephin? I know Bryan Rosner's new book says "never take it", but can an emergency circumstance like this require it?
- Andrew
Posts: 443 | From The Wild West | Registered: Jan 2002
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I didn't know I had Lyme and lived with only minor symptoms. Then I got sick and took Doxy for 21 days for another infection. It took four years after that to discover that I had Lyme. I was very ill and steadily declining over those four years.
This explained 3 other illnesses that lasted for months that we never figured out! But the majority of the time I've had it, I've been prettty healthy.
I think the abx stirred things up that were basically being controlled by my immune system.
Getting a hold of your LLMD is the right thing to do. Hope you're feeling better soon.
Like Lymetoo, I cannot eat gluten. I don't have celiac though. I still get lots of digestive issues, especially during a herx. It seems that GI issues are a big symptom for me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Jill E.
Frequent Contributor (1K+ posts)
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posted
Andrew,
I have not yet been on Flagyl (I'm going to have years of cysts so I have a feeling I'll have a reaction like yours).
But my question is about the Cipro. How long were you on it?
The reason I ask is that Cipro is used to treat Bartonella, and Bartonella treatment has really worsened some horrendous symptoms for me.
Just a thought that perhaps you were stirring up Bartonella at the same time as the Lyme cysts were opening - for a double whammy.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Marnie
Frequent Contributor (5K+ posts)
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posted
C.diff, hey?
"Anecdotal evidence suggests kefir can help treat pseudomembranous colitis."
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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quote:Originally posted by AndrewInCA: I was on a massive dose (2 gm/day) but only for 6 days.
Oh my!! I didn't see the dosage. I'm surprised you're still on the right side of the grass!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Ya know what? This thread is helping me pin down my tick bite.
First Lyme 1995. No question about that. 6 mths abx, I was better. I did develop lots of mysterious illnesses after that, all of which could be caused by lyme. But one thing I have learned from this board is that some will attribute all things to lyme. Not so much I'm thinking.
Spring 2004, I was treated for HP ulcer with prev-pack. This includes biaxin and bismuth. No herx at that time. Just got better and better.
Sept 2004, Treated with Cipro for what turned out to be shingles. No herx there either.
Oct 2004 go camping. Nov 2004, bad, bad, bad virus and never the same after. Bad mental confusion, hot flashing, and bloated all over for months until Aug 05 migratory joint pain hit and Lyme diagnosed again. Everyone thought it was from the original bite, but after reading this post, I don't think so.
Just 4 weeks ago, I was again treated for HP ulcer with clarithromycin and amoxicillan and bismuth. Major herxing going on.
Doctor followed with Allicidin and the herx was so bad I had to back off from 6 a day to 2 a day.
So, based upon my lack of herx before and what you guys are saying here about Cipro causing a herx, I'm wondering if I even had lyme prior to Oct 04.
Sorry, Andrew. I did not mean to take away from your very serious problem. Just had one of those lightbulb moments and had to comment.
I was allergic to Flagyl and my throat closed up on it quickly. Perhaps you are having an allergic reaction too?
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Andrew, This may seem like a no-brainer question, but you did say that you had been off antibiotics for a couple of years. Just wondering if you remembered to take acidophilus with the Flagyl? That large of a dose could kill off all your G.I. bacteria in my opinion -- both good and bad.
Leaky gut or a yeast overgrowth can cause some really horrible symptoms and could even be mistaken for Lyme. Of course any alternative doc worth going to should have checked into this possibility.
Hope you get some answers soon.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymewreck36
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Member # 4395
posted
Some, rare people, do react very violently to fluroquinolone antibiotics, like cipro. Have you taken cipro before safely?
Cipro caused me severe neurological damage that lasted 2 1/2 years. I was again damaged by flagyl with lasting neuropathy.
Please be careful. When you stop the antibiotics, do you feel better? That would mean it is a herx you are having.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Bryan Rosner is anti-Rocpehin? if that is true I am anti-Bryan Rosner!!!
Rocephin saved my life. I had weakness and went through a losing weight phase that was scary-
Rocephin is wonderful- so is Doc S- do whatever he says*)!)*! You are in loving hands-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Back to your original post...seeing alternative doctor and taking biaxin & amox and going down hill. Could it be the abx that are actually harmful to you now?
Sure the abx are killing off some bad guys, but in the mean time you body is screaming for help. What are you doing in the way of detox methods to get the dead toxins out of your body ASAP?
I would talk to your LLMD about backing off two at a time and maybe pulsing the other. Remember you can't win by trying to stop it in it tracks. You must proceed slowly with harsh abx and continue doing anything and everything to clean out your gall bladder, liver, bladder, colon etc.
Find someone to do lymph drainage treatments, body work etc.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Andrew, so sorry to hear about your problems. Hope you are consulting with your LLMD as it seemed like you made progress during those first few years and were able to go off abx.
It also seems like IV Rocephin helped you a lot and I would chalk it up to extreme arrogance for anyone to say that Rocephin is bad.
Before we knew he had Lyme, my son was diagnosed with Crohn's disease - another inflammatory bowel disease - it turned out that later we had his biopsies re-tested for Lyme and Bart and found Bartonella by PCR (was done at MDL). So, your LLMD might want to obtain any biopsies (if any were done) and have them tested.
Colitis can certainly result in weight loss - sorry yours has been so severe. My son, after being very thin for years has finally seen progress and been able to gain some weight in the past year.
Keep us posted, Nancy
Posts: 688 | From Florida | Registered: Aug 2001
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posted
Jill - I was only on Cipro for a few days and I don't think that it did much of anything. I've never been positive for Bartonella.
Marnie - not sure why you mention c.diff? I had food poisoning some months ago and think the colitis could have been e.coli that had hung around.
seibertneurolyme - I know what you mean about yeast. But the reaction occured so quickly, and was a classic herx with all the neuro symptoms, etc.
lymewreck36 - yes, I'd taken Cipro before and no reaction.
I believe Rocephin saved my life too... As far as Bryan's new book goes, he doesn't believe you should take cell-wall inhibiting abx because they cause cysts to form. But I am in bad shape and need to begin forward progress soon. I'm concerned about what more Rocephin will do to my body, though...
- Andrew
Posts: 443 | From The Wild West | Registered: Jan 2002
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liz28
Unregistered
posted
I recently had a massive Lyme relapse (not co-infection relapse) after starting weight training on the back muscles. They had received no attention for years. Within days, all those cysts had broken open.
It sounds like you will be lucky in the long run, because those cysts would have opened sooner or later.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Liz, that's very interesting. Sorry to hear about the relapse though.
I weight train and have for years. After I work out my back, it's sore ... not like after-exercise sore, but like fluish sore. I wonder if it's getting the Lyme there when I work out.
The other areas I work out don't cause this trouble at all.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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You mentioned paralysis...were you dx with Bell's Palsy? I have good friend who is a Lymie w/ BP. Did they run a pic?
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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posted
Sorry to read you're having a hard time. I have a question about dosages. Wouldn't it be a better idea to take a smaller amount in the beginning and work up? That way we could see how we do and keep the degree of herxing down.
Posts: 13171 | From San Francisco | Registered: May 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Salmonella, like Bb...locks onto our DNA.
My son, too, had food poisoning.
SEVERE, really severe, diarrhea.
One week later, still abd. pains.
Doc thought appendicitis.
Surgery + Abx.
Appendix not infected.
Salmonella + appendectomy + abx. = NO BENEFICIAL BACTERIA LEFT.
He went into a HUGE downward spiral. Tremendous weight loss. N/V. Stools smelled horrible and food NOT digested. SEVERE depression.
Step #1...LOADING, I mean LOADING doses of probiotics for a week and then a LOT of nutritional supplements with the help of a nutritionist-RN to BEGIN to restore his body.
It has taken over 2 years.
The ONE thing that made an IMMEDIATE difference in his depressive mood was:
A bath. 4# of Mg sulfate (epsom salts) and 1# of baking soda in warm water for 20 minutes only.
He was JOYFUL after that bath. I wish I had a video of his response to that 1st bath. It was AMAZING.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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Vanilla
Unregistered
posted
Kaiser told me I have chronic ulcerous colitis but I think it is a LD symptom with me and or gluten intolerance or yeast and stress.
Dr. S. says it is inflammatory bowel.
Who knows anymore but I do think LD can give you gastro symptoms.
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RoadRunner
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posted
Abstract A clinical diagnosis of Lyme disease was made in 15 consecutive patients between the ages of 8 and 20 years who presented with a history of an erythema migrans rash followed by chronic gastrointestinal symptoms and multiple organ system complaints. Endoscopic evaluation was performed to assess the gastrointestinal mucosa and to obtain biopsies for polymerase chain reaction (PCR) to the outer surface protein A (Osp A) of Borrelia burgdorferi. As age matched controls, 10 patients with biopsy-proven Crohn's disease were also tested by PCR. The laboratories assessing the histopathology and performing the PCR were blinded to the diagnosis of all specimens. The presence of B burgdorferi DNA in the gastrointestinal tract was confirmed by PCR in all of the patients with the clinical diagnosis of Lyme disease who had chronic gastrointestinal symptoms and in two control subjects with Crohn's disease. Biopsy evidence of chronic gastritis, chronic duodenitis, and chronic colitis was found in patients with Lyme disease who had chronic gastrointestinal symptoms and was associated with the presence of B burgdorferi.
The chronic gastrointestinal symptoms that occurred within 6 months of an erythema migrans rash and Lyme disease may be attributed to a direct effect or immune mediated response to B burgdorferi.
Introduction Lyme disease affects a wide range of organ systems, producing dermatologic, musculoskeletal, neurologic, genitourinary, lymphatic, hepatic, renal, respiratory, cardiovascular, and ocular manifestations. [1,2] One report to date describes the presence of Borrelia burgdorferi in the stomach, intestines, and colon of children.[3] To further address the clinical manifestations of Lyme disease and the possibility of direct involvement of the gastrointestinal (GI) tract, a prospective study was made of 15 consecutive patients who had a physician documented erythema migrans (EM) rash followed by chronic gastrointestinal symptoms and multiple organ system complaints of Lyme disease.
hope this helps
I had alot of stomach problems when I was really sick with lyme disease but with the right treatment you can get better do as the docs says to the T and you will get better no cheating is the key.
if you have any questions ask away
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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heckyeah
Frequent Contributor (1K+ posts)
Member # 603
posted
quote:Originally posted by AndrewInCA: About 7 weeks ago I got colitis and was given Flagyl/Cipro for it. I hadn't taken an antibiotic in over two years.
I had very bad colitis from the Lyme. You were probably already on your way downhill from the Lyme. I'd see a LLMD ASAP.
Flagyl is very strong. You must still be very infected.
Jennifer
Posts: 1082 | From Upstate New York | Registered: Jan 2001
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posted
It sounds like there's no way to know whether the colitis was caused directly by the Lyme or something else. It scares me as much as the Lyme itself because I'm afraid it can't be treated easily with Lyme, or it could interfere with my Lyme treatment.
Seeing LLMD on Wednesday.
EWT1638 - no, I have no Bell's palsy, I get a weakening of my right arm or leg that feels like partial paralysis.
- Andrew
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