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terrible headaches/weird body pains

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Posted 10/17/2013 10:01 PM (GMT 0)
hi all, I just got definitely comfirmed I have lyme and could have had it for years. I have the most terrible headache pain in the back of the head next to my neck, shooting pains up my neck. it makes me feel crazy.

then i started rifampin and azithromycin 3 days ago, and since then I have been having weird pains all over my body and feel terrible. I am sure this is a herx isn't it? today, i had terrible abdominal pain too.

I also feel like I am so depressed, like I am living in a fog and have alot of apathy, life doesnt seem worth living. I also cannot tolerate much stress.

does anyone else have this problems?
Posted 10/18/2013 12:06 AM (GMT 0)
Life is totally worth living! I think I have lyme, got tested today, have been having shooting pains in my rib cage not in the neck.

(Considering my bp, heart sounds and cholesterol were all great, it's unlikely I have a heart problem.)

But from what I hear, these are all symptoms. :(
Posted 10/18/2013 12:14 AM (GMT 0)
The beginning was the worst for me. You will stabilize though. Do not stop the antibiotics. If you continue to feel terrible call the Dr. and find something you can tolerate. Im sorry you are going through this. Try to take some baths with Epsom salts as it will help you detox. Take care.
Posted 10/18/2013 6:49 AM (GMT 0)
Hi Mystery1,

I do think you are herxing. Take it slow, and be sure to detox enough. Being in a herx makes you feel miserable, you will need to take it day by day, try not to stress about your new discovered limitations.

Most of us have these problems when on medication.

I understand you about the headaches. It has been one of my main complaints the last months. I have had 'normal' headaches for 19 years now, every single day, but lately I developped migraine attacks and cluster headaches. They drive me crazy. I can't get rid of them, but if it is about that headache at the back of my neck, I go and see my osteopath, he takes away the tension that has built up in my back, neck and shoulders. Maybe you can try that?

Good luck, and hold on,

MarieLS

Posted 10/18/2013 1:32 PM (GMT 0)
((HUGS)) I am sorry you are feeling this way. I know it is scary and awful but try to take it as a sign that the antibiotics are doing the job of killing off the bacteria. That is a good thing despite how terrible you are feeling. Maybe your doctor could lower the dose for a few days or adjust it if you feel too uncomfortable, just ask her or him what they think. I have been having weird reactions myself to the antibiotics I started taking a couple weeks ago. It really is awful. I feel depressed at times as well. We are all here for you.
Posted 10/18/2013 2:01 PM (GMT 0)
I would agree with Marie, that this is most likely a herx. Some people are so backed up with toxins that their body can't detox fast enough, that they quickly get overloaded with them.

Have you been tested for the MTHFR gene mutation? That is one reason why some of us don't detox very well on our own.

Be sure that you are doing all you can to detox!! Dry skin brushing, full detox baths and the foot soaks, drinking at least 64 ounces a day of lemon water (unless you are having muscle cramps/spasms/twitching as these could increase), and eating a "clean" diet. Many use green smoothies to get more nutrition and to include foods and things that will help them to detox.

You can also use products such as activated charcoal, cholestyramine and other 'binders'. The trouble with using binders though is that they bind to anything and everything! So you must be careful to have a 4 hour block of time where you aren't supposed to eat or take any medications or supplements - or they will bind to them instead of the toxins and then flush them out of your body.

I would suggest that you contact your doctor before using any binders and ask him/her what they suggest you do.
Posted 10/18/2013 2:18 PM (GMT 0)
From Dr. Jemsek:

Regrettably, but not unexpectedly, we have treated a number of individuals whose Herxheimer experience is so intense and prolonged that continued treatment is virtually impossible. After exhausting all customary supportive and treatment measures, which incidentally never includes the use of systemic steroids, we have learned the art of using a balanced program of anti-oxidants, copius fluid administration, and appropriate wash out therapeutic periods during a treatment protocol. Much more of these concepts will be discussed in our next website edition of 2007.

The escalating headache symptoms experienced by some patients on intensive antibiotic treatment is a Herxheimer effect that merits special attention. This "Lyme" headache is thought to be linked to cerebral edema brought about by Bb die-off and the ensuing creation of inflammatory microfoci in the leptomeninges. In our experience, severe CNS symptoms, such as incapacitating headache, are more likely to occur when the patient has had prominent CNS symptoms or findings pre-therapy, e.g. encephalopathy, aseptic meningitis, optic neuritis, and so on. In 2-3% of our treated cases, we have had to resort to one or more therapeutic lumbar punctures to provide relief by lowering intracranial pressure.

Given the miserable experience which we may exact on our patients during therapy, we would perhaps be better off if we followed the advice of Russell McMillan, DDS, DPH, who wrote the Arthritis Trust of America in 1994 with his personal remedy for the Herxheimer reaction. "I take a saltz bath which consists of adding 1 cup salt, 1 cup soda, 1 cup Epsom salts, 1 cup aloe vera, to a hot bath which I remain in and keep hot for about 11/2 hours all the while consuming about 2 quarts of warm water. Evidently the perspiration and osmotic pressure removes the causative toxins. I find it quite helpful" (117). Hey, sounds ok to us.
Posted 10/18/2013 4:04 PM (GMT 0)
Unfortunately, staying in a detox bath of that length can also spell a whole lot of trouble for many with Lyme disease though!

Many herx with just staying the water for 10 - 15 minutes. This can create even more serious issues for someone with blocked detox pathways, even life threatening for some - we have had members here with life threatening reactions - so caution is always recommended. I would never recommend that someone with tick-borne infections stay in a detox bath for 1 1/2 hours. That kind of instruction needs to come from a doctor that is willing to put the patient into a hospital setting in my most honest opinion. Any other setting other than a hospital where emergency medicine could intervene if a life threatening situation arose, would just be a foolish chance one would take.

Other than staying in the detox soak that long, I do agree with what is being said in that 'clip'.
Posted 10/18/2013 5:24 PM (GMT 0)
I did not use the recomendation but usually did about 6 cups of epsom in warmer water for 20-30 minutes. I did not have a bad herx but felt light headed a couple of times.
I remember when I was so sick I felt totally useless it was the only thing that made me feel better.
Posted 10/18/2013 7:31 PM (GMT 0)
wow thanks everyone. the jemsk info was awesome. I am seeing a md in tn but at one time had an appontment to see dr jemsk.

the water helps alot with detoxing and with herx. there is no doubt I have lyme disease because of what is happening to my body now. I think I may have had it 15 yrs. I have been told I have fibromyalgia, arthritis, bipolar, anxiety, depression, hashi's disease, hhv 6, cmv, ebv, food intolerance, leaky gut, candida, you name it.

i am so happy to fiinally get the real help I need. I have been suffering for years.

I am depressed because due to all the hell of the last 15 yrs, I have lost so much, relationships and friends, and my husband's family and my own think I am mentally ill or a hypochondriac because they will not educate themselves on lyme disease, and they don't understand. i am a RN I was doped up unecessarily on benzos, given psychotropic drugs at one time, at one time I thought I really did have a mental illness because of not being able to find the answer. they all thougth since I was a rn I should know. which I did not. i have been just trying to survive until I could dig thru all the crap and info long enough to help myself because believe there are hundreds of mds out there who know nothing about how to find out the right answer on lyme diseasse as you all know.
Posted 10/18/2013 7:57 PM (GMT 0)
Hang in there Mystery!! Here you are among friends and others that understand much of what you are experiencing! Once you are healed, then you can snicker to yourself as they wonder what was going on all this time, or maybe they will listen then!
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