posted
i'm new here, and would really appreciate any input, i cannot tolerate any herx on top of feeling so so bad already and so weak already, i have POTS and low blood volume and have terrible herxes even from tiny amount of samento, colostrum, even 1 abx pill, and wanted to know if there is anything i could take with treatment, or any abx or herb that doesnt give such a strong herx, i already have terrible daily symptoms, and just cannot take the worsening, but i know i am getting worse so just dont know what to do, hope someone can offer some advice, thanks radha
Posts: 392 | From New York | Registered: Dec 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hello,
I was like you, I had untreated lyme about as long as yourself, and when I started antibiotic treatment, I started off with 1/4 of an antibiotic. I was on the Biaxin and cut it in 4 pieces and worked my way up.
I did this with all antbiotics, and it worked.
My herxes were severe, I HAD to go slowly with the antibiotics or the herxes would have killed me. I wanted to get better quickly and tried the higher doses like others, but that did not work, I had to cut back and work up.
My herxes were so severe I thought I was living a nightmare, so know that they can happen, BUT the good news is is that if you are on the right antibiotic therapy, you will feel BETTER after the herxing.
Know that they will get better. Remember this when you are in tears or bashing a pillow on the bed, or wanting to die, they will slowly end.
Be strong, that is what I can say to you.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I'm like you, too-- ill for many yrs, and so violently sensitive to antibiotics that I couldn't take them. My LLMD put me on the Marshall protocol, starting with very low doses, and increasing a tiny amount at a time. I'm only 2 months into treatment, but what I've found so far is that the lst week of even a tiny increase, I'm gonna be in bed most of the time. I'm gonna need pain and sleep meds, too. If it becomes unbearable, I can take the increased dose every other day, or even every 3rd day.
The second week is better, and the 3rd week is better yet. The 3rd week I try to catch up on household tasks and prepare to be nonfunctioning in week 4. It's a slow, tedious process, but on average, a bit better than pre-tx.
All in all, you may want to consider whether you're herxing or just allergic to the antibiotic, or both. One thing I'm learning from the collective wisdom of this website is that no one treatment is ideal for everyone.
Posts: 40 | From Arizona | Registered: Dec 2005
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posted
thanks for all your posts, so i guess there isnt anything to take to reduce the herx, or to avoid it, radha
Posts: 392 | From New York | Registered: Dec 2005
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posted
Go very slow and small to begin with. Often docs do not tell you that and you are so sick you give up. I had this experience myself. A good LLMD will work with you on this very calculated approach.
Remember, without a herx, spiroketes do not die and they have to die for you to get well. Lymelady
Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Radha, there are things to do and take to reduce a herx. But first and foremost, a herx can be damaging to the body, so don't tolerate too much of a herx. (that's my opinion)
Things I do for a herx:
Epsom salts bath: Start with about 1/2 c of salts if you have not done this before. But as you get used to them the goal is about 2 cups of salts in the tub. Some add hydrogen peroxide after being in the water for about 5 minutes. Others add in baking soda (makes your skin feel smoothe). I will especially do this bath at the end of the day. It relaxes the muscles and decreases pain, makes me sleepy and helps get magnesium into the body.
Benadryl. Again at the end of the day because it makes me sleepy. It has been suggested to use pediatric benadryl about 4 times a day, so that you don't get to sleepy.
Anti-inflammatories as tolerated.
Drinking lots of water. We need to consume about 1/2 our body weight in ounces per day (unless you have a cardiac condition)
Lemon-olive oil drink: Take one washed lemon and blenderize with 2 tablespoons of olive oil, about a cup of water/ice and a sweetener like Stevia. Some strain it through cheese cloth, others drink it with the pulp. When I use this I feel better within 15 minutes.
Lastly, I take a break from the antibiotics. But run this by your specific doc before you do this. It would be a good idea to talk with your doc about how you are responding to treatment. They may have suggestions also.
Karen
Posts: 1847 | From Maine | Registered: Jun 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Poor Radha.
Some people can tolerate a lot of pain and some can barely tolerate any pain. You have to honor your body's ability and work within it. I wish there were a way to avoid more pain, but it does seem you have to get worse in order to get better. This is because of the toxic die-off when killing the bacteria. You need to try everything possible to help with the herxing and see which are effective for you.
Advil seems to help me most with the pain. Also, my doctor gave me an herbal formula that includes bromalain to reduce the swelling. These two have helped me most. Epsom salt baths worked well while I was soaking but twenty minutes later would put me into severe pain. Dry heat (such as a heating pad) was very helpful when the swelling would cut off circulation to my hands making them cold and stinging.
Cutting back the meds to reduce the amount of herxing may prolong your recovery but I believe it is absolutely necessary. Your body may not remove toxins very quickly and you have to work with your body.
Be sure to eat very well to nourish your body so it can get you well. Drink lots of water and avoid foods that are bad for you such as fried foods, sugars, simple carbs like cakes. If you are swelling, avoid the nightshade plants ie: tomatos, potatos, peppers of all kinds, eggplant as they will increase the amount of swelling.
This bacteria is mean and requires your every effort to conquer it. Just remember, YOU CAN GET WELL!
Good luck and God bless you as you go through your recovery.
-------------------- 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
i cannot sit in a tub, so baths are out, and the pain is so unbearable already, headaches ,and bone pain, its not relieved much by even codeine and vicodin, and i already get terrible night sweats daily in sleep that lower my already low bp and make me dehydrated, and give me more palpitations, then my beta blockers dont even work to control it and then i cant even eat anything, coz i take the betas to control the tachy and strong beats i get from food, due to low blood volume, i am bedridden and too weak already, i just dont know what to do, have tried benedryl, i know i am not going to get better without taking abx or something like samento, but physically just not strong enough to get worse, dont know what to do, guess this is a no end situation, but i so appreciate you all taking time to reply and for your suggestions, is there one abx or natural treatment that is least srongest? i know it depends on what co infection you have, parents and myself so worried, thanks again radha
Posts: 392 | From New York | Registered: Dec 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Rahda, I am taking a baby dose of antibiotics because that's all I can manage. I tried for years to take the doses normally prescribed and kept having to stop when it became unbearable. Many short courses of ABx and i just decided to give up. For the past 4 years I had no treatment and got progressively worse.
Clearly this wasn't working for me. I've started taking a tiny dose a few days a week and am going to try and work my way up. It'll take a long time but it's much better than being stuck in this forever.
There are people taking fractions of pills a couple of times a week or less. Speak to your doctor and see if they will help you get a teensy dose of something into you. See how it goes from there.
You can always stop and start again even lower after a break until you find your best starting dose.
Right now I am having herxes but they aren't severe and I can tolerate them 4 days a week, so far. I had been on a higher daily dose(still was 1/4 of what anyone else would take) and had to stop for 2 weeks and begin again.
I'm determined to make some progress with this, I believe you can do it too. Don't give up, k? somebody more clever than I will show up with more help. I suspect there are many in this position.
Hang in there, trueblue
ps. i herx awfully from epsom salts baths. What does help with muscle pain from a herx for me is lemon juice in water and somegreen tea, it seems to take down some inflammation for me.
pps. I hope you can find something that will help.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Radha
From what you discribe- Sounds like you should look into Babesiosis (Babs)
Its another infection that you can get at same time from tic--
Night Sweats is a perty good clue -
Many have it here--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
All good advice above. Something not mentioned yet is that people vary a lot in response to abx. When blood levels of a specific drug are measured, they vary a huge amount between people on the same dose at the same length of time after taking the drug.
Also, some drugs work bacteriostatically. So, no dramatic killing takes place, therefore no herx. This is the way doxy worked for me, although again, some people seem to herx on it, even tho it is bacteriostatic, rather than bacteriocidal.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
thanks so much to all of you for replying, i cant get in the shower or tub, and i herx from doxy, and from even tiny dose of so many abx, much much less than standard dose, that is what is so frustrating, the herx is just strong, but i guess there is no alternative than to go thru it, i just wish my current symptoms werent so unbearable, and daily already, otherwise my body could take on the added stress of the herx, thanks again to all of you radha
Posts: 392 | From New York | Registered: Dec 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Radha,
You just sound too sick to be normal even with our disease. I'm worried that maybe you are on too much stuff and have killed your immune system. The cures may be killing you.
How good is your LLMD? Does he/she also use integrative medicine? You may need a break from abx to work on strengthening your immune system and getting your body back to a some state of health so you can endure the treatment for Lyme.
How is your diet? That may sound too simple if you have never believed "you are what you eat" but think about it. You are made up of cells. If you don't give your cells the nutrition they need, they will become sick and illness will invade your body. The good news is, start nourishing them now and they will build back up and begin to help you fight your illnesses.
Don't give up. There is an answer for you.
-------------------- 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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Higher fat diet. It was essential for me to eat high fat foods to control the herxing. I read here that the fatty foods stimulate the release of bile which then removes toxins. I especially relied on hardboiled eggs & nuts.
posted
i am so touched by all your caring and informative responses, considering i am a total stranger! i cant take any baths, and i am not on any abx, thats the problem, i have to stop after just one pill, coz then the herx is too strong, and my diet is well, almost non existent, since i eat so very little due to the low blood volume and blood pooling and the POTS, but what i do eat is nutritious and i take alot of vitamins too, i want to thank all of you again for taking the time to reply, radha
Posts: 392 | From New York | Registered: Dec 2005
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