i recently had to go off abx after being on zithro/doxy for several months. i also herxed badly when i added tindamax.
after that i had a bad flu, and while i had the flu candida came back badly (itching like crazy, pseudo allergic reactions) and i treated it with diflucan but it did not really work. however -it was a bit surpressed.
after some time, i had the worst lyme or whatever symptoms ever. im now hypersensitive to almost anything, my psyche is bad i feel so depressed and get random panic attack, i need histamine pills to manage my pseudo allergic reactions, i had intense thyroid pain and have felt hyper instead of hypo but the worst of all is really the feeling of beeing super super sick. plus i never had pain before and now i have pain in my back, like someone kicked me there in the spine.
i feel like my life is on the edge again, my pain is too much, my symptoms kinda relpased but when i started the treatment i was at a MUCH MUCH better baseline. i didnt feel so sick. i was like "yeah i have those symptoms, gotta do abx to get better..."
a few days ago, my pain was soso bad ( i normally dont have that) that i went to the ER and they found NOTHING. all labs came pack pretty good, when i was sure i have some other infection going on because my kidneys were hurting and i had those breathing problems/panic attacks. i also have the dreaded HLA genes, so i react immensely to mold/lyme toxins but it wasn't so bad before. when now someone brings in a rotten fruit, i instantly react and i feel like dying. i can assure you, before treatment i could have tolerated it FOR DAYS before getting a reaction like this. same for everything else.
then, suddenly i couldnt tolerate my parents house (never happend before) because i developed intense and extreme pains in their house, could not sleep ONE minute because of some chemicals or whatever they have in their home.
basically what did happen? did i go off abx and relapse and get SO BAD??? i dont like the abx, i felt they made me herx, then feeling better (i had like 8-10 weeks where i felt pretty okay), then A LOT worse, like the lyme is there NOW and really BAD and before it was semi-dormant. if i would feel bad, it would go away after some time or it would just be better in a few hours/days. now i feel like i can't live without them. this is really bad. it makes me hopeless because i barely have the money to pay a DR.
i seriously need support. i never had such a bad time, i feel like dying is an OK option. this is NOT ME. i mean i would never kill myself, but the pain and psyche problems are just too much. the combination ****s me up. what did happen? did that happen to you? is this a relapse? a flare? should i get back on abx as soon as posisble? i need help!
Posts: 141 | From cali | Registered: Nov 2012
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posted
"when i started the treatment i was at a MUCH MUCH better baseline"
same. sorry to hear. it's very confounding.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Indica, you have been going through hell. So sorry. It sounds like when you went off the ABX, you still had a lot of bacteria or toxins in your body. You were fighting too many things at once.
Do you have a good LLMD you can return to? You need someone experienced with treating lyme to help you deal with all of this.
I know that heavy duty ABX can cause yeast and gut problems, that you are probably suffering from now. That needs to be addressed, but also the other complications of lyme and the residual damage it causes.
If I were you, I would try to book an appt. with a good LLMD ASAP. In the meantime, take a look at the website below and join in the next Webinar. It may help you get started on a better path to healing. Good luck to you.
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Indica, I too got horribly worse when attempting antibiotics. What I thought then was herxing I now feel it may not have been at all. My body was reacting to the antibiotics in a negative way. My gut was becoming inflamed which in turn was igniting inflammation throughout.
If you can find your way to an integrative or functional medical doctor they could probably run some tests to help you. A nutritionist may be able to help as well. I'm not sure I would go back on antibiotics if your system is already so inflamed.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Heavy duty antibiotics can cause many other problems than yeast and gut issues.
You have to work to heal your autoimmune system. Antibiotics will not do that. When you got the flu it was probably way too much for your body to handle causing stress on the immune system. This can cause other issues to flair. For antibiotics to work your immune system must have some function left.
It may be best to find other methods to deal with this disease. They are out there.
People get signficant relief or cure and sometimes both with Rife, The Burhner herb protocols, the Cowden protocol, Salt C protocol, heavy metals detox, Ozone therapy, and IV glutiathione which I bet you really really need right now.
Have you learned about what supplements will support your treatment and help you through the detox? Without support being on antibiotics alone can cause your detox pathways to jam up and this causes pain and many other symptoms. Even herbs can do this... but antibiotics cause more detox issues than herbs do for the antibiotics are often toxic in and of themselves. vitamin C is also essential for detox and to support the immune system and to help keep you more alkaline. I suspect that lots of folks here on the forum are vitamin c deficient. Chronic illness eats up vitamin c like crazy. I eat a really good diet and when I was diagnosed with lyme I was signficantly vitamin c deficient so I now take upwards of 6 grams of liposomal c a day. Sometimes when I read some of the symptoms here I wonder if people are having scurvy.
I hope you find the help you need. See if you can find a naturopathic doctor who is familiar with treating lyme.
[ 11-10-2013, 11:43 AM: Message edited by: Carmen ]
Posts: 803 | From USA | Registered: Oct 2013
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hi, my doctor is not very experienced on detox, he is more or less someone that gives you antibiotics and that's it.
i was on cowden before, i think it helped me in some ways. my system really seems to be overloaded with toxins, right. im from europe, not US do you have any idea where i could got to for an naturopathic approach?
Posts: 141 | From cali | Registered: Nov 2012
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posted
Where in Europe? Germany is very good for alternative medicine. I would think that France might have some good doctors too.
Posts: 803 | From USA | Registered: Oct 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
LLNDs are great! I'm able to take more antibiotics this year because of the detox protocol I'm on.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Maybe you could get something to take for the pain? Chronic pain can increase anxiety... If you can't find the actual cause - there's no sense in suffering with it endlessly. I'm all for natural healing but sometimes we need to give our brain a break from all the "noise".
All of these symptoms seem so familiar to my experience & others I've read about. Sometimes, I wonder if this is all caused by Lyme or something else. Do you think you could be sensitive to EMFs? There are so many interactions between all of the toxins, pathogens, parasites, fungus, etc. It's so difficult to pinpoint the problem.
Good luck. I hope you feel better.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
If you have genetic methylation issues then you really need to be on the supplements to treat those issues probably for life. By stopping the meds you are allowing your disease to progress and then by not being able to detox correctly it multiplies the problems greatly.
It is not a quick or easy fix for most people unfortunately. If you felt better on antibiotics then obviously there is an infectious problem. The placebo effect is greatly exaggerated in my opinion.
You need to find a doc that can prescribe meds and that understands detox as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
well, at least my urine turned from dark/ish to a light and good colour again. before that it was super dark and looked crazy. secondary porphyria from cpn?! im from germany!
EMFs make me a bit "hyper" but overall other factors (enviromental) play a bigger role. i seem to get hyper sensitive to mold but especially when im on abx. and when i get exposed i get intense symptoms.
it is indeed strange that i feel "Better" on antibiotics... but it does not last too long.
i already did two abx treatmens of 1/2 a year of combos (i never could go high enough with the doses after round 1) and in between two big rounds of coweden and zhang and i made not a lot of progress.
im off abx because i feel i made my yeast problem worse. yeast, yeast, yeast. all the time. if i have a bowel movement i feel like fog is kicking up after that, also allergies increased and i have ringing ears, general fog, the GI feels weird and allergies spike. this was not the case before abx but i took diflucan in between and vsl3. still got it.
i also took nystatin to see what would happen and i still feel bloated and foggy/itchy from it. it might not be the best option.
i react very strongly to thiole/sulfur supplements. it makes me itch. also garlic/milk thistle and so on do this.
i just popped a diflucan. well i report back if i feel better on that. most of the really weird and unbearable symptoms seem to lessen a bit. but its still not good.
Posts: 141 | From cali | Registered: Nov 2012
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Indica and Ellen, I'm one of those lyme patients that abx became my enemy. They became toxic to me about 2 years into the tx. I am what is know as a abx failure. Don't know why, it was what it was.
I actually started tx 10 days after the flu-like illness from he!! started. What my PCP and I didn't realize was 6 mths prior when I came to him with horrible knee pain, it wasn't arthritis.
It was acute lyme. A dozen new nymphs tick bites during summer and 3 weeks later. Bam, I was down and out. Chronic lyme and no telling which other bad guy joined it.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Antibiotics are made from mold... Aside from wiping out beneficial, as well as, bad bacteria - this may be why yeast & mold allergies can get worse... (?)
I'm not against abx... I just don't think it's a good idea to take them for a long time. We have to find other strategies.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I too believe every (well always exceptions) lyme & co patient should do abx for some time early into the dx.
Yes sparkle, I agree long long term and 4/5 at a times makes me shiver.
Other strategies are the key. Overload of abx and no other protocols, such as detox, supps, probiotics, organ support, healthier life style choices, can lead to serious disasters.
So complicated.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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