Herx, relapse, drug reaction?

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nefferdun
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Date Joined Feb 2008
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   Posted 4/2/2009 7:41 AM (GMT -6)   
I have back pain and arm pain that diminishes for a short period of time and then comes back very strong. It has been going on for over a month. I was taking Levaquin for 5 weeks but quit it 2 weeks ago. Then I started Rifamphin at half dose and a day later Biaxin also at half dose. I know the Biaxin gave me bad diarrhea so I have not tried it full strength. This morning I woke up very dizzy but I am starting to feel better after half an hour. Rifamphin lists that side effect. I don't know what is causing the back pain and pain in my arm. I am beginning to worry that I cannot tolerate any of these antibiotics any more and I am not sure what to do. Every time I have to speak to the LLMD it costs one hundred dollars or more.

I am being treated for bart and lyme. To make things worse, I broke down and spent the money to buy Schaller's book on bartonella. Most of it is rather blurry pictures of rashes etc with a small amount of text in the beginning. He lists less than 20 abx and herbs used to treat bartonella and nothing cures it, according to him. Biaxin and Rifampin does not work. Why should I put myself through all of this and tax out my kidneys and liver if I am just going to relapse? He says Levaquin does not work either.

I don't know if this pain is a side effect from lingering from the Levaquin, maybe even permanent damage. Or if it is something positive like a herx, killing the bacteria in that area of my body. Or I am just getting sicker.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 4/2/2009 9:04 AM (GMT -6)   
Unfortunately I don't think any of us can tell you if you are getting worse. I would offer my opinion tho. I think you are smart to stay at half doses for awhile. I know I have had die off where my head gets dizzy. But I have also in the past know that at times I was getting worse and was getting dizzy. I would say you need to give this new drug combo a couple more weeks if you can stand it. Also about Dr. S book. There are people here who have tested + for bart or blo and have gotten better with leviquin, biaxin, mino and maybe other drugs. Anyway my point is: there are so many different strands out there that you just can't go with believing that one drug can't kill it. You just don't know which one will work on your strand. Don't give up hope. There are just too many variables to try to fit yourself into one little box. Give yourself a little more time with this new combo and work on detoxing and boosting your immune system at the same time.

ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 4/2/2009 9:13 AM (GMT -6)   

Hi nefferdun.  I am sorry you are feeling so bad.  It can be hard to tell what is from what.  Have you ever had the back and arm pain prior to taking Levaquin?  I am just speculating, but since this pain comes and goes it could be a herx.  It is normal for Lyme symptoms to wax, wane, and migrate.

I cannot believe your doctor charges to ask a question. You should be able to ask questions regarding your treatment.  Would you be charged if you faxed your questions to the office?

The meds you are taking are often prescribed, so I have a hard time believing they are ineffective.

Are you taking high-quality acidophilus at least two hours apart from the antibiotics?  This may help the diarrhea.  If you are taking it, maybe increasing the dose will help.

Hang in there okay?

 

minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 4/2/2009 9:24 AM (GMT -6)   
After treatinf lyme and babs for 2 years. I have been on mino and rifampin since September along with suppliments and DEFINATELY have gotten better. My goal is to graduate to herbals (cowden) and totally be off abx. Hang in there I felt awful the first few months on these meds. Blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!


nefferdun
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Date Joined Feb 2008
Total Posts : 900
   Posted 4/2/2009 9:53 AM (GMT -6)   
Thanks very much for our replies and help.
I checked online to see if this could be kidney pain in my back. I don't think it is because it is dull and achy, not sharp. So that is good. I am still a little dizzy- don't walk straight. I had vertigo/ataxia when I was sickest before starting abx and during my first month of herxing. I had back pain for a month, about a year before I was diagnosed. I had to take pain killers it was so bad. Then it just went away. I also had the same arm pain about 6 months before I was diagnosed and it lasted a month and then disappeared. I have had this pain since the beginning of march.

I am taking fluconnazole for yeast - started it a few days before the other abx with no side effects but it can cause dizziness. So can Rifampin. I take billions of probiotics twice a day. I am going to call the doctors office and leave a message. .

I won't take the drugs today to see if the dizziness gets better.

Post Edited (nefferdun) : 4/2/2009 5:04:14 PM (GMT-6)


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 4/2/2009 9:55 AM (GMT -6)   
Nefferdum, I too think you should continue and ask if your doc will answer a question off the clock. I am doing the same as you - just started Rifamipicin. Taking my dose late in the day is letting me sleep through my side effects- fatigue, emotional lability, and nausea. My dental neuralgias are worse on this but I think this is a good sign. Could your arm pain be a neuralgia (common with Bart)? I am holding at 300 mg Rifampicin for 6 days then I plan to increase to 600 mg for 6 days before starting Biaxin. Another thought is that the Biaxin could be stirring Lyme symptoms manifesting as arm pain. Rifampcin has a very good record for Bart. I am using it with HH capsules from Zhang 4/day for Bart. According to Singleton's book he finds Rifampicin and Biaxin good for Bart/Lyme.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/2/2009 3:54 PM (GMT -6)   
Thanks pcpc
This is discouraging because I felt well enough when I started Levaquin to ride my horse and now I can't because of the dizziness. The back keeps me parked on the couch.
I called the doctors office and he is out of town but the person taking his calls will talk to him and call me back tonight. I did not take rifampin and biaxin today - will wait to see what I am told. I am glad the Singleton's book says this is good for bart and lyme. I wish I could tolerate it better. According to Schaller's book, HH is very effective against bart but you have to take it in "very high doses", not what Zhang recommends in his book. Cumanda and essential clove oil 75% is also ok. You might want to use Listerine mouth wash several times a day for your dental problems as it has 4 essential oils that kill bacteria (according to his book). I am going to, especially after reading how hard this can be on your gums (bart) and roots of your teeth (lyme). Don't buy Schaller's book. I could list all the useful information in one paragraph. In fact, I think I just did.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 4/6/2009 11:37 AM (GMT -6)   
Nefferdum, how are you doing? I went up to 600 mg Rifampicin last night- it was like tripping... A bad trip...intense depressive thoughts, sweats, facial twitches, weird dreams, pains in my feet and shoulder, headaces.... 16 hrs later better...I guess this is Bartonella.... I had no positive labs but I knewI had it....

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/6/2009 3:42 PM (GMT -6)   
Hi pcpc,
I got all messed up, quit the rifampin and biaxin after a couple of days because of dizziness and pain in my back and arm. then got the bright idea to see if my left over Ketek would take care of things and got even worse. So I did not take anything to day and am starting to feel better - not nearly so dizzy and the pain is not so bad either. I don't know what caused it but I could not tolerate it. I am going to talk to the LLMD Wed when he gets back.
I hope you are doing much better than your first 16 hours as that sounds terrible. I am also sure I have bartonella. I did not have a positive lab test either but the LLMD told me the labs test for two strains and there are 30.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 4/7/2009 9:08 PM (GMT -6)   
The lyme is resistant to abx. It wraps itself into a protective shell. All of the herxing if from all of the good bacteria that is in your body.
Your body is trying to tell you something...like...I feel horrible...try something else...lol
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


nefferdun
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Date Joined Feb 2008
Total Posts : 900
   Posted 4/8/2009 1:01 PM (GMT -6)   
I talked to the LLMD and he wants me to use Cowden's herbs for the lyme but he says there is no good herbal treatment for bartonella. He wants me to try the Rifampin again without anything else. He thinks the dizziness is drug related but the muscle pain is a herx. I don't know and actually neither does he. It is just his educated guess. He gave me a few herbs to reduce the inflammation which he thinks will help with the pain. I am not too eager to use Rifampin again but maybe it will be ok without the biaxin. I read Biaxin increases the toxicity of Rifampin. I am not going to try it again until the dizziness is completely gone.

Scooterscooter
Regular Member


Date Joined Sep 2008
Total Posts : 66
   Posted 4/8/2009 2:30 PM (GMT -6)   
My dr. is working with a naturopath, who agreed I have bart and lyme and also thinks I have erichilosis. She gave me CandiBactin for the bart and erichilosis. It has oregano oil, thyme and few others. I've been taking it for about a week, so I haven't really noticed a difference at this point.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 4/8/2009 2:55 PM (GMT -6)   
Nefferdum, I agree with your doctor. dizziness is a known side effect of Rifampicin and I had it initially. the key thing for me has been to go slowly as suggested in Dr Singleton's book. I took Rifampicin 300 mg each afternoon around 4 pm away from food. That way as the nausea and mood shift hit I was asleep or in bed for the worst of the herxing. Each day got easier- though emotionally it has been challenging. I did notice that initially I was very tired but after a few days, I was doing things I had been procrastinating since I became ill last summer.

After 6 nights I increased Rifampicin to 600 mg and you saw my earlier post. I saw my homeopath last night and am now on a high dose Nux Vomica homeopathic and am finally starting to do better emotionally. Even before I added the homeopathic though my elbow burning neuralgia pain improved. My teeth were way worse and I couldn't look at food- but today I did the Listerine you suggested and I think that maybe they are a little better! I have been very emotional but after a big fight with an old friend really cleared the air....emotions are slowly improving. I am now on day 10 of Rifampicin and starting to see improvements overall. Still major night sweats/heat....

I plan to add Biaxin when things settle down and will go very slowly.

By the way Marthas Vineyard I don't agree that you herx from good bacteria. Good bacteria should only be in your gut- if you are reacting to good bacteria in the blood you have leaky gut and an immune response to that, but it is not a herx reaction. I believe that herx reactions indicate your body's reaction to dead, bad, bacterial complexes affecting tissues/ blood flow/autoimmune reactions. If your doctor has written/read otherwise I would love to see this. I just didnt' want people reading this thread to be confused or discouraged about antibiotics. They play an important role in recovery. Antibiotics are limited with Lyme since they only treat what's in the blood (with Flagy being one of the few antibiotics to enter cysts),,,I do think herbs are needed as well as detox, etc. and I use them with antibiotics for now and I plan to use them exclusively when all herxing is done and I feel good for a while....before withdrawing antibiotics. So glad you are doing well and I plan to check out the clinic you mentioned.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 4/8/2009 4:23 PM (GMT -6)   
pcpc -

may I ask you about the dose of nux vomica you are taking?
Thanks for sharing! Greetings, dorit

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/8/2009 7:18 PM (GMT -6)   
Schaller mention something like thyme being used for lyme - will have to look that up.
Thanks pcpc for the encouragement to give Rifampin another try. I tolerated it ok for a couple of days until I started the Biaxin so maybe I can use it without getting dizzy. I am going to wait a week until I get some things done I need to finish and can afford to be knocked out again. Then I will start with 1/4 of a dose and slowly work up.

I know what it feels like to get your motivation back to do things. I did not realize just how bad the bartonella was affecting me until I started to improve on the Levaquin. I would hate to go back to that place! I felt depressed most of the time and then very agitated and easily irritated. I don't know how my husband could stand me. I was so out of it I felt detached from myself and everyone. My IQ literally dropped 20 points, which I think is permanent. I just can't think of things I used to know, especially nouns. I get confused when I used to be pretty quick at figuring things out.
I thought it was all lyme but bart has more neurological, emotional mental symptoms. Since Levaquin, my muscle twitching spasms, chills, pins and needles are nearly gone.
My dizziness seems much better this afternoon.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 4/9/2009 7:59 AM (GMT -6)   
Dorit I was prescribed the homeopathic remedy by my homeopath. He claims that for diseases within tissues like Lyme, very high doses are needed. I had to order the extract from a pharmacy in Germany, http://www.gudjons.com/apotheke/2_hausapo1.htm

I ordered a Q1, Q3, and Q5 dose. I have been taking the Q3 dose now, under his guidance. I have had such dramatic improvement from herxing with this that I will write a complete new thread here so that others will learn about it. I would love to do a trial with patients using homeopathics to treat herx reactions and Nux may be a very good remedy- will work on a new post today.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 4/9/2009 8:46 AM (GMT -6)   
pcpc - thanks so much for the dosage info of nux vomica and the link ( I stay in Germany) I am a big fan of Hahnemann and homeopathy often helped when nothing else did. I took nux v. too some time ago for my bad moods and to give me a rest with all my strange symptoms; I tried different things but nux v. was best; I did not know I was lyme+ at that time. Moreover I obviously had a west nile infection too as bloodwork came back positive (twice).

It is a great idea to start a thread on the nux / herxing! greetings, dorit

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/9/2009 12:29 PM (GMT -6)   
I need all the help I can get in the homeopathic remedies that work because I cannot tolerate any kind of chemical now, not even thyroid. I got so dizzy after taking cytonel this morning it was making me sick. And my pain intensified too.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 4/9/2009 3:11 PM (GMT -6)   
nefferdun,

I wonder if you are reacting to things more because of toxicity buildup? Are you able to do anything for detox?

Homeopathy is a great way to help feel better...I use various remedies all the time to help. The other day, after putting a few drops of colloidal silver (mixed in water) through my feeding tube, I felt really nauseated. I assumed it was from die-off but wasn't sure...but with homeopathy, it doesn't matter so much about what is the cause, just the symptoms matter. So I took a dose of Nux V. homeopathy and the nausea went away and hasn't returned.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Ceftazidime (for Pleural Effusion), Colloidal Silver (used topically).


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/9/2009 4:29 PM (GMT -6)   
Razzel, I don't know what is wrong. Maybe it is toxicity. I researched de-toxing online and got something from the health food store for de-toxing heavy metals and took it one night. The next morning I practically fell over when I got up, and continued to feel dizzy all day. To top everything off the bartonella seems to be coming back with more pain in my shins. I think I will figure something out and get back on some kind of protocol. I had bartonella for 3 years with no treatment so it is lucky I know that I have it.
It is hard to tell what is what and when you don't know that, you don't know where to begin.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 4/9/2009 4:55 PM (GMT -6)   
I'm told that I am too ill to detox, and yet toxins are partially responsible for perpetuating and compounding my problems...so yes, I totally understand about not knowing where to begin. There are many ways to detox, and some are too harsh in certain situations...I suspect that was the case with the metals detox stuff you tried. We're all doing the best we can and it is good that this board is here to discuss ideas.

I hope you find answers soon - take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Ceftazidime (for Pleural Effusion), Colloidal Silver (used topically).

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