I seem to have developed a oversensitivity to every medicine, even "natural" ones like herbs or vitamins.
A month ago I tried a tiny dose of suprax (cefixim) � 5 hours later my neurological fatigue got so worse I had to go straight to bed, my arms became heavy again, my asthma-like breathing problems became worse. Didnt get better afterwards.
Days later I tried 400mg of St Johns Wort, a herb against depression. What a mistake. Already an hour later I got hot flashes, everything got extremely worse: my fatigue, brainfog, nerve pain, breathing problems and heavy arms. Got new symptoms like problems to move my face muscles. This was two weeks ago. Since then nothing has improved. I am housebound again. Even at night I feel so exhausted I can barely sleep (I know it sounds weird).
Also iron made me worse before. I even had a light neurological reaction to a tiny dose of Vitamin C two days ago! in all cases it was definitely a reaction to those meds. It occured right after taking it. Which i think is strange cos usually bad reactions to meds only happen after while?
Could it be that a week of probiotics I had before caused this oversensitivity? I also have a feeling of inflammation in the gut and blood on the toilet paper (diagnosis of anal fissure), which only got worse on probiotics.
This whole mess seems to have started with taking tinidazol long time ago. After that I reacted very sensitive to ever antibiotic. They all caused brainfog and other neurologic symptoms from then on. Before they didn�t. So I got off abx, but developed cfs.
im confused. Has any of you had something like this? Its definitely no herx. how can it be to react so similar to substances which are so different? How should I ever be healthy again if I even cant take herbs and vitamins?
Its hard to understand it from a logic point of view. Maybe you can help me understanding.
[ 07-25-2011, 02:12 AM: Message edited by: sickmate ]
Posted by seibertneurolyme (Member # 6416) on :
The obvious answer to your reactions is a leaky gut. When hubby had bad gastritis in the past he even reacted to water. It didn't matter what he ate or drank -- just about everything caused increased tremors and/or seizure-like spells.
Reacting to iron may also indicate that you have babesia or some other parasite. Also suprax which is also called bactrim DS is a babesia med -- could partly have been a herx reaction to that med.
You need to heal your G.I. tract in order to be able to absorb nutrients and meds properly -- or they won't do you any good. Also -- the longer the stomach is severely irritated the greater the chance that you will develop real food allergies or even multiple chemical sensitivity.
Possible causes of a leaky gut are things like G.I. parasites, candida or yeast overgrowth or bartonella in the G.I. tract or other bad G.I. bacteria such as klebsiella.
Some simple fairly inexpensive things to start with -- drink aloe vera gel (might be a good idea to dilute with water) and take DGL supplements before meals (deglycerized licorice).
Whatever you do -- do not take glutamine powder. It is often suggested to heal the stomach -- but it will go to the brain and cause worse neuro problems for lymies.
The tindidazole while not as strong as flagyl obviously killed off too much of the good bacteria in your G.I. tract causing dysbiosis.
For now sauerkraut and yogurt if tolerated would be easier to take than probiotics -- too concentrated of a dose of probiotics will make you feel worse.
There are lots of herbs that could help heal the stomach and kill off candida -- it will be trial and error to see which you can tolerate. Olive leaf extract capsules would be one option.
You may need prescription nystatin or diflucan or xifaxin or a parasite med such as alinia to get things back in balance.
A good lab test would be the G.I. panel from DiagnosTechs if you can afford it.
Good luck.
Bea Seibert
Posted by sickmate (Member # 31502) on :
Thank you, Bea. Very good ideas!
Leaky gut? I have also though about this.
I already did a stool analysis lately. results:
- not enough lactobacillus and bifidobacterium - lots of staphylococcus aureus and a bit of clostridium sp. that shouldnt be there - a bit of Candida, but not enough to make me sick - no salmonella or shigella - ph 6,5
All babesia and parasite tests have been negative so far. I know this doesn�t mean too much. But if I had parasites flagyl and tini must have helped me, not destroy me? And also diflucan only increased my neuro pain.
Didn�t know that suprax is effective against babesia? Although its only a cephalosporin?
How did your hubby get better? (I hope he did!) Anyway I agree I have to heal my gut � but that�s difficult if probiotics only make you worse. I already eat sauerkraut and yogurt, but will consider other things you suggested as aloe vera gel, deglycerized licorice and olive leaf extract. I hope I wont react to them again. Before taking a chemical med like alinia again I think I need more evidence of a parasite infection.
Posted by springshowers (Member # 19863) on :
I had this issue fir years. I ended up on iv meds which for me made a huge difference and during that time I did food allergy testing and diet and that fixed alit if it. I am nit sure how I got fully better overall but after putting meds in my veins insted of swallowing them and doing that actually for nine months. I then dus a test of antibiotics and such that I had the worst and near immediate responses to and i had zero response and I tried other tests and again no response. I wa and still am astonished. I believe healing the gut is only one part but I did major major bug time detox during that period as well and leaky gut us absorbton and if course reabsorption of toxins and infections and chemicals and all that stuff including food toxins etc. So I believe 25percent healing gut and 75 percent detox all while I gave my gut a rest using IV My body is changed so dramatically in this area I am astonished because it was not even a full plan but I knew I could not tolerate Anytging u had to digest. Even after a few bites of food I would get so sick a curl up in a ball waiting for the feeling to pass. Took hours. It was horrible. So to treat I knew I had to use iV otherwise I was giving up. Best thing I ever did. Good luck and take away from my story You can change you body and how it works and reacts. I still am amazed at how I can take anything now. I look back though at the years I suffered and everyone reading this remember my story too because doctors would say guess what. That I am herxing and Thst if I feel worse that means it's working ! I tried to explain in more detail and there always was a reason such as allergy or herx or I fed the bugs depending on what substance u discussed so u stuck in there a pushed through for a few years Thst way and I look back and feel sad about ut as u was trying to be tough and determined but I see in hindsight that was so wrong and I was not given the right info and guidance I now can tell what a herx is and honestly I think my problem is much widget and more common than we all know as a community and it's all being called other things
Treat with IV if possible and if not liquids before pills if any kind for all meds and supplement And DETOX to the max to get the load down And do food allergy testing and elimination diet and bring finds back slowly after a good six months That's what my experience was and again u feel it's not talked about Ir addressed enough ESP with chronic and long standing patients who Aldo are nor getting better and not respinding to medications and treatments I think also we go to talking about dtix problems Lije KPU too fast when ut could easily be leaky gut and we are just putting stuff back in to our bodies
Posted by ticksickfamily (Member # 22786) on :
Just to make a correction to the above, Suprax (generic name Cefixime) is not the same as Bactrim DS. Suprax is a cephalosporin antibiotic and is not used for treating Babesia. My son took Suprax to treat his neurolyme.
Posted by AZURE WISH (Member # 804) on :
sent a pm
Posted by seibertneurolyme (Member # 6416) on :
Ticksickfamily is correct -- Septra is the same as Bactrim DS. I was wrong.
Sickmate -- hubby has been sick for 11 years now. Has made a lot of progress but he is dealing with a new infection of rocky mountain spotted fever right now. Has been running daily fevers since mid March. And we are still trying aggressive babesia treatment.
The lyme and bartonella are much improved. His Parkinsonian tremors and more severe movement disorder symptoms that he had for over 9 years are mostly gone. And the daily seizure-like episodes are mostly gone as well.
It has been a long road but we are starting to see the light at the end of the tunnel.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Sickmate .. Do you have an LLMD??? You said your dr diagnosed you with CFS after going off abx. That doesn't sound right.
I suggest finding a probiotic that is dairy free. That may help. Just google it and you'll find some. Sounds like you really need them.
Posted by sickmate (Member # 31502) on :
Glad to hear your hubby is better, Bea. When he can stand aggressive babesia treatment then his reactions to meds must be really better!
Yes, I do have a llmd, Lymetoo. He treated me for years agressively, but unfortunately we were only successful in the beginning.
Ironically my probiotic was dairy free. but nevertheless it ****ed my gut totally up.
Posted by TF (Member # 14183) on :
It sounds like you have an inability to detoxify.
People who cannot detox (can't get rid of the dead germs that result from taking antibiotics of any kind) get sick on every med they try, even on very low dosages.
Some people are genetically unable to detoxify.
One friend of mine got sicker on lyme treatment because she could not detoxify. By the end of her lyme treatment, she had only 5 simple foods that she could eat without getting sick. So, her body was reacting to almost everything in a negative way, like an allergic reaction.
She then went to an alternative practitioner who detoxified her over about a 2 month period. It brought her back to total health. She was so happy she emailed every person she knew.
She never gave me the details of what this practitioner had done, but she said he practiced ayeurvedic medicine.
My doc had me drink lots of water and eat lemons to detoxify. However, if you have a problem detoxifying, you will likely need much, much more than this.
Posted by sickmate (Member # 31502) on :
Hm, you think its because of inability to detox? Not sure. Whats toxic about a tiny dose of Vitamin C or even a joghurt, which gave me neurological symptoms yesterday?
Definitely its not genetically cos until years ago I could take every medicine on the planet.
What a frightening story about your friend, but with a happy end! You do not have her e-mailadress for me to find out how her practitioner helped her?
Posted by klutzo (Member # 5701) on :
I do not disagree that L-glutamine in large amts. can convert to Glutamate and be disastrous to the brain, but much research has convinced me that this problem is probably dosage related.
I had the same kind of problems you had, esp. with foods, plus bile reflux gastritis that developed after gallbladder removal. It caused awful cramping and burning reflux at night, so that I could not sleep at all. It is also a precancerous condition, far more serious than the more common GERD.
I also have a precancerous metaplasia in my stomach, and a strong family history of stomach cancer.
One thing I would suggest is that you have an Endoscopy with biopsy done by a GI doc to find out what exactly is going on down there. This is not a bad test at all. You are given IV meds so that you are out of it for the 20 minutes it takes, and the only prep is an overnight fast.
Yes, I have neuro-Lyme, but nothing else worked for my gut, and I tried it all, including several expensive meds.
What I read said that if you keep L-glutamine at or under 4.5 grams daily, it is safe for the brain. Even my super-conventional GI doc recommended it.
For me, it was a miracle. I can eat anything and I can take anything, though I do need to take some meds with food. If I skip even one night of L-glutamine, I am in agony again. It is very important to keep it dry, as it can generate ammonia if it gets too moist in it's container.
Yes, my neuro-Lyme has gotten worse over the years, but I am getting no ABX and never have, due to allergy, so who knows if it would have gotten worse anyway.
I do think other things should be tried first, but if they don't work, you might want to try L-glutamine, keeping the dose low, and see if it helps.
In my case, if I had not found it, my neuro-Lyme would not have mattered, because I would have starved to death or committed suicide. Only you can decide how desperate you are and what chances you are willing to take.
Good luck and God bless, klutzo
Posted by TF (Member # 14183) on :
I tried and tried to get details from my friend because I thought it was important information. I pressed her for information about what the man did. She couldn't explain to me how the man detoxed her. It seems to me he gave her various products to use or maybe to take. She didn't have his name for me to find him that way, either (because it was an odd name and she didn't know how to spell it). She seemed to just want to forget the whole thing now that her terrible ordeal with lyme (lasting about 2 1/2 years of treatment) was finally over and she was now feeling wonderful.
This has been years ago now, so there is no contacting her. But, your experience with the vitamin C and the yogurt are exactly what was happening to her. So, I strongly suggest you find someone who is an expert in detoxifying the body.
The man my friend saw practiced ayurvedic medicine, but this is likely not the only type of practitioner who specializes in detoxifying.
This man said that my friend stil had traces of the flu shot she had gotten years ago still in her, an old tetanus shot, and all of these other dead germs.
When the body can't handle the "debris" anymore, it starts treating everything as an "enemy" as I understand it. It is on overload and so it is overly sensitive to everything you take in, misclassifying it as a germ, evidently. So, that's how food can cause these reactions, and vitamins, etc.
I remember her telling me that her lyme doc actually apologized to her for not realizing sooner what was happening to her. She sent her to someone to detoxify, but evidently it didn't totally solve her problem.
The patient was from the Middle East, and so she evidently felt like that type of practitioner might be able to help her. She was right.
I certainly hope that this turns out to be your problem. As you said, you were able to take meds in the past, so you are most likely not genetically unable to detoxify. So, that is really good.
I am sure there are many on this board that are experiencing detox problems. Perhaps if you started a new post and put "need detox expert" or something similar in the title, people would be able to point you in the right direction.
I don't know what part of the county you are in, but if you want to tell where you are, you could perhaps even get some names sent to you. A visit with someone good might really help you out. I hope so.
Posted by Razzle (Member # 30398) on :
Aloe vera juice is a mucus membrane irritant and I would NOT take it with a bleeding fissure. Coconut oil is a much better alternative - it is very healing to the colonic lining (short-chain fatty acids feed/nourish the cells in the lining of the colon).
DGL is good. Other gentle herbs for the gut include marshmallow root and fenugreek.
Toxin overload is not the only cause of hypersensitivity to everything. I have a Regulatory T-Cell deficiency, which means my body can't shut off inflammation once it starts. This is a very big contributor to my own hypersensitivity to many things (including chemicals, etc.), along with my genetic issues with methylation (methylation is a huge factor in detoxing, and if the genes that influence the enzymes involved have errors, then it can impact detoxing significantly). Lyme is known to "activate" gene variants in the methylation cycle, and is also known to bog down the cycle thus creating the appearance of methylation cycle blocks. Customized targeted nutritional supplements can release these blocks and restore the ability to detox better again.
Posted by lada (Member # 32618) on :
How could any of this have anything to do with the gut? Second I believe there is a genetic test out there that can be run to check ones ability to detox. I've heard the ones with the bad genes are sick for a very long time even while taking abx and plenty of other supps to support their immune health. You may want to check into that test. I'm sure a doctor who's Lyme literate will know all about it. Having that bad gene is not a good sign for those who have chronic Lyme.
Posted by AZURE WISH (Member # 804) on :
lada - leaky gut can create or at least amplifiy allergiclike reactions.
I asked a dr about the test to see how i detox. he told me that the lab he used to use doesnt do it anymore and even if they did he wouldnt do it for me now because you have to take like three different things (cant remember what they were) and since i react to so much stuff he wouldnt want to risk it now for me.
of course there are probaly other tests too.
not all llmds are familar with finding out why someone doesnt detox.
Posted by Razzle (Member # 30398) on :
I have no financial affiliation with any of the above websites, doctors, labs, or companies.
Posted by lada (Member # 32618) on :
Azure, What test is done to show a leaky gut?? Just never heard of such a thing. Also had no idea you need to take meds in order to have that genetic test.
Posted by AZURE WISH (Member # 804) on :
i think the leaky gut is done through genova labs. my mcs dr said given my history and symptoms no need to do it especailly since you have to take stuff (that he is not sure how my body will react to)
the detox test i was describing isnt a genetic one. i think it is supposed to give information about how and where your body is and isnt detoxing.
i am not really aware of gene tests as a general cant detox thing. (but maybe there is and i am just not aware) for specific conditions that hinder detox there might be.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by AZURE WISH: lada - leaky gut can create or at least amplifiy allergiclike reactions.
- For sure. Google it.
Posted by lada (Member # 32618) on :
Just looked it up. Appears to be very contraversial much like Lyme treatment. Linked to stuff like MS, FIbro, Colitis, Celiac all stuff I personally am negative for. Interesting though.
Posted by sickmate (Member # 31502) on :
Klutzo, I already had an Endoscopy some months ago, they did a biopsy, but unfortunately only to find out if i have celiac. i dont.
I did it without any meds cos I didnt know how i would react to it.
TF, thanks for answering my question about your friends email. I can totally understand everybody who wants to stay away from disease when you get better.
Since i am in europe i dont think most of the people here can give me a recommendation for a detox expert.
Posted by lada (Member # 32618) on :
I had the endo and colon scope. All is well on both ends. Would that rule out a leaky gut??
Posted by sickmate (Member # 31502) on :
Still suffering from these leaky- gut -like symptoms. Havent found a doc who knows about leaky gut yet. My llmd wants to treat me with ivig now. Ive read it could also help against leaky gut.
Posted by Tincup (Member # 5829) on :
Part I- For detox problems, which can include not being able to take any more than a tiny amount of a supplement, probiotic, or antibiotic without having bad reactions, please be checked for MTHFR. Very important.
IF you have the MTHFR disorder, please be aware of the problems it can cause, especially these...
AVOID Laughing gas/Nitrous Oxide- (surgeries with anesthesia)- Nitrous oxide uses up vitamin B-12 can cause severe problems or death in people with MTHFR Disorder.
AVOID Bactrim DS- In pregnancy it is associated with increased incidence of cleft lip. Otherwise the system is depleted of Vitamin B-12.
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Part II- I am sorry, I disagree about not using L-Glutamine powder for leaky gut.
I've seen it work too many times to help, not harm. Perhaps some may have a problem with it for whatever reason, as can happen with all drugs, supplements or herbs, but it is a very important tool in correcting a problem that can be very destructive.
All treatments should, of course, be done under a health care professionals supervision.
Many years ago I was ill, similar to what you describe. It took a chiropractor to catch the symptoms of leaky gut and order the tests for me. Mainstream docs, even LLMD's, were not familiar with leaky gut at the time.
Once I researched everything I could about leaky gut, went through the treatments prescribed and fully recovered, I contacted some of the early LLMD's and spread the word this might be a situation with other patients.
Back then we used the same lab for testing, but it had a different name (I think it was Smoky Mountain Lab?).
Some of the LLMD's tested the leaky gut theory and L-Glutamine on themselves, and their staff even used it (many with Lyme themselves). Once they learned about it and read the material, they began recognizing the condition in their chronically ill Lyme patients too.
Once the testing and a doctors diagnosis concluded it was leaky gut (for me), which caused me to also be allergic to more than 40 "good for you" foods I'd been eating regularly, I was prescribed L-Glutamine powder (pure pharmaceutical grade only) by the chiropractor.
In the glass that I mixed the Glut in- with water, I also put in a very small amount of probiotics and a small amount of fructooligosaccharide (FOS), the "food" that probiotics feed on.
This protocol worked like a charm to not only repair the gut lining, but to strengthen other muscles and their linings (bladder, etc). Surprisingly it cleared up my massive female problems too (avoided major surgery by using it after years of really bad stuff going on).
The L-Glutamine healed my gut lining so I was no longer leaking minute particles of food, whatever, into the blood stream causing a cascade of negative effects (allergic reactions, inflammation, etc).
I've seen this protocol prescribed and be successful in heart patients with leaky valves, body builders to help bulk and strengthen muscles, ulcer patients, IBS patients, and others.
Links to many articles and books by holistic-minded LL doctors of various degrees, etc. -
Posted by Keebler (Member # 12673) on :
- sickmate,
You mentioned that you had a stomach biopsy to diagnose or rule out celiac and that it was ruled out.
It may be important to know that stomach biopsies are sometimes not accurate regarding diagnosing celiac.
My biopsy was negative for celiac but it was wrong. I later found out with DNA testing that I did, indeed, have celiac.
The doctor who did the biopsy failed to tell me the importance of daily consumption of substantial amounts of gluten for weeks before the test.
I've very glad another doctor years later suggested that I take a DNA test. She was right about that.
Anyway, even if not celiac, many LLMDs strong suggest that lyme patients avoid even a trace of gluten until well into remission.
Lyme, and all that goes with it, can create a sort of "secondary" celiac of sorts and the stomach lining (and the brain, too) is just usually much better without gluten.
IDENTIFYING ENVIRONMENTAL ILLNESS & MOLD EXPOSURE IN PATIENTS WITH PERSISTENT LYME DISEASE
Lisa L. Nagy, MD Video $15.
(Excellent to get, even if mold is not an issue, this is full of great information.)
She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the recent ILADS conference.
It's a great presentation to see. The DVD can be ordered. Great detail about toxicity issues also here:
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