randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i am so sick and tired of being prescribed meds and paying a mint for them and then wham!! i have such a reaction that i can't take the med and then it goes into a large plastic bin that i have for meds.
biaxin - can't take due to c. diff doxy - break out in red and blue blotches tetracycline - break out in red and blue blotches tramadol - major migraine ambien - nightmares robinul forte - severe dry mouth, dizziness zofran - nausea, dizziness flexeril - headache, nausea liquid nystatin - just for thrush, so keep this one. but doesn't help my systemic
seems the only thing i can take is my bp meds and flagyl.
is anyone else this sensitive? someone said i can get just a couple of pills and try the med but my pharmacist said no, i have to fill the entire prescription.
does lyme make you this sensitive?
if anything happens to me and they see this stash, they'll think i died of a drug overdose or something. my primary goes through a listing and says "well you can't take this,you can't take that, what am i going to do?"
now i'm even reacting to most otc stuff. all sinus meds are out as i get tachycardia really really bad.
lor, i hope i'm never hospitalized and can't talk. they'll probably kill me by giving me MORPHINE, which i'm highly allergic to.
and the only pain med i can tolerate is vicodin which most docs refuse to give now.
posted
Oh I feel your pain! I was just getting frustrated about this myself. I was so upset last night because I had to stop another medication.
I was on Rifampin and it was giving me bad chest pains, left arm pain, and dizziness (among other things). Yesterday I ended up having to go to my primary care doctor to get checked out just to make sure I was ok. My EKG was fine but she said to stop the Rifampin.
I have had trouble with several other meds too since starting treatment a little over a year ago.
I couldn't tolerate Zithromax because it lowered my potassium too much (even with a prescription for potassium).
As for Omnicef I could never get to the full dose without that giving me heart issues as well.
Also last time I took it I was allergic to Penicillin. I haven't taken it in over 10 years but last time I did I got a rash and was told I was allergic.
So my antibiotic choices are slowly dwindling. I seem to be so sensitive to everything. I even have to go slow with natural stuff too although they are more tolerable.
I have been taking Doxy for a couple of months now and seem to be ok with that. BUT I am also only taking 200mg a day so I don't know if that is even enough. I am a small person (5'2 110 lbs) so maybe it is but everyone says you need at least 400mg. Not sure if I could tolerate it at that dose or not. I guess I could ask my LLMD about increasing it. All I know is so far that is one abx I have been able to handle.
At any rate I was just telling my Mom today that I don't know how I am supposed to get well if I can't tolerate any of the medications that treat this.
I am beyond frustrated about all this. We are spending tons of money on my LLMD and treatment but I can't seem to get anywhere.
Anyhow...I can totally relate to this. It is so frustrating when you are so sensitive to everything that is supposed to help you.
Take Care! Pam
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
I feel for both of you. I am in the same situation, not quite as bad but I have to keep switching up meds because its either from a reaction or not helping.
I just had LLMD visit today and alas another switch a roo.
In my Dr's defense he is trying to help me find the right combination to help me but it does get so aggrevating.
We both want me to try Mepron but I most certainly cant afford it and then like with all the other stuff..it might not even help ):
The only concellation randi...is perhaps some one will PM you needing "stuff" if you know what I mean.
Stay strong and God Bless.
Karen (:
Posts: 423 | From Virginia | Registered: Nov 2009
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
that's annoying about your pharmacist- I OFTEN get only a few days' worth of prescriptions for financial reasons, and especially if it's expensive and I'm not sure how I will react. I usually use Costco (don't have to have a membership to use their pharmacy) or WalMart, and I've never been denied when I've asked for just 7 days' worth of something that is written as a 30 day prescription. Those two pharmacies are typically cheaper than anywhere else, too.
-------------------- Symptom Free!!! Thank you all!!!!
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Yep. I was sensitive to just about every abx and many supplements as well. When I finally went on the Jernigan protocol I could take his remedies without any difficulty.
These are natural homeopathic herbal remedies and I didn't have the reaction to them as I did the abx. As you've most likely know from reading my Hansa Center thread, I'm finally getting better.
Maybe it's time for you to consider a natural homeopathic, herbal/botanical protocol like I was on? I believe there are some people who just don't do well with abx. I'm one of them, maybe you are too.
By the way, his detox bath recipe with peroxide, epson salt and fresh grated ginger is outstanding!
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
If there's anyone who has Omnicef, Tindamax, or Alinia that they turned out to be allergic to or can't take anymore for some reason, please PM me, I can't afford mine and am seeking, um, 'resources'.
Sorry to keep putting this request out there this winter. Thanks very much to everyone who's helped me with supplements etc!
-------------------- Symptom Free!!! Thank you all!!!!
I did the detoxigenomic liver test through Genova Diagnostics and it showed which liver pathways are genetically weak and what meds/supplements go along with that - ie what not to touch.
The test results can help a knowledgeable doctor figure out how to treat us supplementwise.
Posts: 13117 | From San Francisco | Registered: May 2006
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sparkle7
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posted
Randi - You can get just a few pills to try it out on most prescriptions. I don't know why your pharmacist said that. The price may be different but it is done.
Some things like oxycodone - if you get a few on one prescription, they don't fill the rest of the prescription - so, you have to get the whole prescription filled if you want all of them. But for stuff like abx - they will give you a few to start off with to try.
Maybe they don't want to do it so they can get all of the money for filling the whole prescription...? Sounds like greed to me - or maybe TX is different than the rest of the country?
Also- I have found that there are special clinics that just do pain management. They are not stingy with pain meds if you need them & they don't cost alot. I haven't been to one but I called & spoke to them on the phone.
Do a search on google for - pain clinics, dallas, ft worth texas
I know when someone is in chronic pain - the thought of life without pain meds is nerve wracking... It doesn't mean you're a drug addict like some people want you to believe.
Have you thought of taking a break from the meds for a bit & just detoxing for a while? Only take what you really need. Some people just don't do well on drugs. I'm one of those people... so I know.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Yeah, randi... I have not heard that you can't get a few pills and not the whole script. That is rediculous. Try checking different pharmancies and if not ask your Dr when he/she writes you a new Rx make it out --the quanity for 3-5 10 tablets or however many-THEN the pharmacy will have no choice but to fill it for that amount.
I worked for a Pharmancy for years as a youth and I can bet there is not a certain amount that the Doctors have to write the script for..They can chose what ever quanity they like--the only exception I can think of is if it was something like liquids and things that have to mixed up...and possibly controlled drugs...but Im not even sure about that.
You really need to check that out.
Good luck,
Karen (:
Posts: 423 | From Virginia | Registered: Nov 2009
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
You are toxic.
The reactions you are having to all meds I have dealt w/ in the past.
Basically your body is overloaded and cannot handle anything like that. Most of the meds you mentioned have chemicals in them that are further stressing your body which is not processing what is already in there it seems.
Pekana drainage kit is a start. It covers a lot of bases to keep your detox organs open and working. So far it's the most effective thing I have used to enable my body to tolerate stuff.
Look into other detox measures as well, Scott's website is one of the best quick references for this...
posted
Robyn I also did the Genova Diagnostics Detox profile-is that differnet from the liver test?
It showed my phase I was very fast (as i understand too fast) an dmy phae II Glucuronidation was to slow/underfunctioning.-indicates poor detox of medications but it does not specify which ones? How di dyou determine what meds/supplements you could go with? I am hypersensitive now and feel like my recent first experiement with drug sent me into what major AI/ MS explosion of symptoms to point of being nonfunctional. Have an app't with an aggressive lyme doc-but fearful that I realy can't handle th drugs and so so sick right now .
Posts: 200 | From New England | Registered: Dec 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sorry to hear that. Didn't you try the Buhner herbs? They may be the best thing after abx for lyme and company. Did you try bicillin too? That might be easier.....
Posts: 2557 | From home | Registered: Aug 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hon, i can't due to having c. diff. that's why i have so much doxy, tetra, and biaxin.
i don't dare touch those things.
and any morphine based or even derivatives are out.
geez, i can't even take nyquil!!!
i'd love to do a major detox but i'm terrified of even doing that.
i had to stop the buhner because i had a meltdown when i ramped to two pills per day. now i don't know if it was a herx or not, but i got sicker than a dog -- thought i was going to faint, nausea, upset stomach, blurry vision, major major migraine, stomach upset, diahhrea, i mean, i had it all!!!
so now i've also got a cabinet full of buhner. i'm thinking of going back to one pill per day and starting over.
if that' doesn't work, then maybe jernigan is in order, but it would have to be long distance.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
You cannot tolerate buhner because it is KILLING more and ADDING to your body burden.
You must open the pathways and allow the toxins out before taking more.
It does not sound like a herx, it sounds like toxicity.
You don't have to nor should you start w/ a ton of detox stuff, add one thing at a time.
Truly, honestly, pekana is an amazing product. I don't know why more here don't use it, although it's not a RX, LOL.
Good luck.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
is it just one product or a bunch of stuff? do you have any recommendations for me?
i'm at wit's end.
i am getting some foot detox pads free and have epsom salts.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I think you could probably try lower doses of Buhner and still have them be successful. There are a few people who've posted over the years about being so sensitive to meds that they needed tiny doses like you're describing.
-------------------- Symptom Free!!! Thank you all!!!!
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Derek and Gary and others I think are so right to tell you are toxic. I had that same issue your talking about for years. ANd I kept trying and trying.
The thing also not only it is the toxic build up of the meds and the die off neurotoxins and the disease itself.. But also..
I want to say that when I figured out that IV abx were so much easier to use and I could use them and then use the same detox methods I was using before and be sucessful that the GI systems has to play a role in this too.
SO if you have Leaky GUT or GI problems I think that plays a role too in how the meds get into our bodies.
I now work much harder on GI things and I already was before but its a lot of work and For me I still have to consider IV as a route becuase I know it works for me. because of these issues.
Also even so.. Detox for each of use can be different. Some can do simple things and be fine. And some of us have to work much harder at it. I did lots of detox modalities at a clinic kinda like Gary and at first the things like Ozone Saunas and Laser Lymph drainanges were killer. I mean I was crying and tell them Icould not handle it. I kept going though and by the end of a few months I could not only do the treatments they were making me feel better.
And then.. Walla .. All those Reactions and sensitivities to meds were Gone. Literally gone.
I could not take Biaxin without just feeling so bad in a few hours. I would lay limp on my bed crying and waiting for the half life time and for it to get out of my system. Doctors kept saying herx. I kept saying. I do not think so.
After my detox and clinic experience I did a small test and took Biaxin for a week and it was like taking nothing. I had NO reaction. Also other meds.. and I could handle normal dosages again better and other things just got better too.
So.. get some professinal help with detox. I used to think I could do it on my own with baths and enemas etc. Those all help. But the things that some doctors offices have we can not afford and they work and they can guide you through it all.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I was starting to feel the same way about IVs and orals. I recently started Mepron.
I don't want to get my hopes up but this stuff really seems to work. I feel better today than I have in a long time.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Can you take Pekana while staying on the abx?
Posts: 648 | From northeast | Registered: Feb 2009
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Derek,
I saw another post from you (can't remember when) stating you thought Heel Detox from Vitacost was as good as Pekana.
Do you still use Heel Detox or feel it was not as good?
Thanks, Jen
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by randibear: is it just one product or a bunch of stuff? do you have any recommendations for me?
i'm at wit's end.
i am getting some foot detox pads free and have epsom salts.
The epson salt is good but it's better to use the hydrogen peroxide and fresh grated ginger wrapped in cheese cloth or tea ball. I think I posted the recipe somewhere here but I'd be glad to repost it if you'd like.
The foot detox pads are pretty much worthless. There's a better route to go than using detox pads if you can't go to a place that has a ionic foot bath.
For anyone interested in Dr. Jernigan's mustard foot bath, here is the info:
Stir into warm (not hot) water... to cover just above the ankles:
1 T. dry mustard seed powder 1 t. cayenne pepper powder 1/2 t. dry ginger powder 1/2 t. dry rosemary powder
Dr. Jernigan says that this foot soak is used as relief from general aches, pains and toxic headaches. He also says that it seems to increase blood and lymph circulation.
Soak your feet for 20-30 minutes and if you'd like you can do this with your hands in the same water for the same amount of time.
posted
It depends on what state you live in as to whether you have to fill an entire medication prescription at one time. During hubby's travels we found out that in New York and I think South Carolina the pharmacist must fill the scrip exactly as written or if you get less than the full scrip then you can't refill it again for the balance.
In Virginia hubby always just gets enough meds for 3 or 5 days to start on a new med since we do not have a specific dollar co-pay -- all meds are 60/40 split on hubby's insurance.
I think there is a different rule on controled drugs -- think you have to fill it exactly as written.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
I forgot to mention, each time you do the detox bath it's important you dry brush your whole body with a natural bristle brush. This helps to open the pores of the body by getting rid of the dead skin and makes it easier for your body to absorb the bath detox.
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Good Point Gary.
I do this every day and forget to mention it .
The Dry brushing is very important and helpful..
PS.. Some docs say no magnesium is good and not to even use epson salt and to instead just use a natural sea salt.
UP to you I just thought I would mention it. It is thought the bugs thrive on it and you could get worsening of symptoms from that.
I find the sea salt works as well and I feel better about it .. but I know other doctors who have not given the same advice so it is one of those things..
Also drinking lemon water.. with a whole lemon at least. And lately I have been doing Grapefruit too and eat a whole grapefruit every night and I am feeling a big difference. I love how I feel after a eating a grapefruit.. it really settles everything down. Maybe it has the same affect as a lemon and more?
And if you have benonite clay Another good one.
Helps a lot for me as well.
You could go through many threads and come up with a huge list of detox ideas......
Some are much more expensive than others. IF you are finding doing it on your own is not producing results I would get professional help. Because it can be done. I was not able to completely on my own in the end.
And Gary can probably attest to that too..
Sometimes we need that extra support and help to get us over that edge where we are stuck.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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quote:Originally posted by f13girl: Robyn I also did the Genova Diagnostics Detox profile-is that differnet from the liver test?
It showed my phase I was very fast (as i understand too fast) an dmy phae II Glucuronidation was to slow/underfunctioning.-indicates poor detox of medications but it does not specify which ones? How di dyou determine what meds/supplements you could go with? I am hypersensitive now and feel like my recent first experiement with drug sent me into what major AI/ MS explosion of symptoms to point of being nonfunctional. Have an app't with an aggressive lyme doc-but fearful that I realy can't handle th drugs and so so sick right now .
f13, phase I of the detoxigenomic liver test tests for 8 enzyme pathways. If we test positive on the first two, we metabolize too quickly. Most people with MCS test positive on the first two. I did.
The lab sends back a bunch of papers with the results, and what to take, what to avoid. We might possibly need a doctor who can interpret the instructions.
If you are sensitive like that, I dont think you're a candidate for aggressive treatment. You need to see a Lyme doctor who can work with MCS - ie, treating with supplements to treat the problem pathways. That's what I'm doing with my doc now.
I also have found that I'm able to handle a bunch of anti-inflammatory supplements which are bringing my inflammation load down.
Sorry, Randy - needed to respond to f13 here.
Posts: 13117 | From San Francisco | Registered: May 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i wish we had more, what do you call them, homeopathic? doctors around here.
i cna't travel very far so it would have to be the fort worth area.
i know there is a woman in colleyville who has a health food store who worked with cowden and she does all kinds of testing and all. but i understand she is outrageously out of this world expensive. shame...
that's the only one that i know of.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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MariaA
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Member # 9128
posted
watch out with the grapefruit (advice given above), it can really change how some drugs metabolize in your body. Pomegranite, also. Other citrus doesn't seem to do that.
-------------------- Symptom Free!!! Thank you all!!!!
Then if you search on sites like this one you can get a list of people doing certain treatments and then when you look into each one you will find more of what your looking for in your area
Do searches for Integrative Clinics, Wellbeing clinics, Homeopathic clinics, Cancer treatment Integrative clinics and such..
You sometimes have to use various methods and wording to find such places..
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
I have found a ton of my resources by searching under cancer treatments or cancer clincs because they encompass the whole body healing and the integrative ones all include things for many diseases and overall detox etc.
Take a look.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Randi,
I also experience what you are talking about. I always get one tablet to be tested and then I want my prescription with a minimal number like 10 and many refills like 4 or 5. This helps a lot.
I think we are toxic and this is not herxing.
I have to take 1/4 of mino and often need a break or I take 1/2 of flagyl. I feel much better since I just take lower dosage.
I ordered now the allergy immune kit and want to see what the test will say.
You also can order the antibiotics without preservatives and other bad stuff at a compounding pharmacy. They test better for me but still not ok. I am allergic to the capsules and get them off.
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Gary, good to hear you are feeling better.Would it help to buy Dr. J's book ? I see on the internet that he is doing phone consults.
Posts: 1834 | From US | Registered: Oct 2008
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WildCondor
Unregistered
posted
Take a break. You may try herbs etc., in the future but right now you sound overwhelmed. Gives your gut a rest too.
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Randi-
Pekana drainage kit is 3 different homeopathic remedies boxed together, each one designed to support and open different pathways/organs.
I know it might seem like a bit much for some people, but it lasts 1-2 months depending on how frequently you use it, and for me, it has been an amazing product.
I still herx, but not the "I am dying" (literally) way I used to.
There is much I do and anyone can incorporate other than pekana kit, but I feel it's a great foundation. Again, I learned this from Scott and his website has a wealth of info on detox. (No, I don't plug Scott for any reason, it's simply a very good resource)
-Fresh clean pure water (at least 64 oz. daily, more benefit found by adding electrolytes and minerals) If you cannot afford a decent water filter, a brita or put is a start
-Oral glutithione (http://www.vitacost.com/Twinlab-Mega-L-Glutathione-Caps) This brand of oral glut is the best as it has all the necessary precursor;, albeit more expensive (http://www.naturalhealthyconcepts.com/complete-glutathione-NW60-p-nutri-west.html)
-ACZ nano- great zeolite and general detoxifier (http://www.integrativepsychiatry.net/acz_nano_results_rna.html)
-Chlorella- Biopure.us has the purest form IMO but is very expensive, other brands like E-Lyte and Sun can suffice
-Welchol- Rx from your Dr. Will absorb neurotoxins in the gut similar to chlorella
Nutramedix Burbur & Parsley- Both very good for mild detox, come in tincture form, and address detoxifying different organs (http://www.myherbs.net/productinfo.asp?prod=NM-001) (http://www.myherbs.net/productinfo.asp?prod=NM06420)
-Magnesium- Is essential. The body has over 300 magnesium dependent enzymes. I prefer magnesium Malate form as it helps w/ FM type pain but most other forms will suffice as well
-NAC & ALA are both glutithione precursors, powerful antioxidants, and help remove some metals (Xymogen is the best brand)
In addition to all the above, adding something like Juice Plus will help your body stimulate it's natural responses on it's own. Nature's way has a product very similar to JP and MUCH cheaper. (http://www.vitacost.com/Natures-Way-Garden-Veggies-Formerly-Nutri-Juice-Veggies) http://www.vitacost.com/Natures-Way-Orchard-Fruits-Formerly-Nutri-Juice
There is also the issue of heavy metal toxicity, and this is extremely important, but should only be researched and addressed once the basic detox organs are working and your pathways are positively responding to what you are prompting them to do.
I have learned alot about this subject, because I am HLA-DR4 + which in certain Drs opinions is the genetic marker for one who has much more difficulty detoxing naturally than usual. This could explain the state of chronic illness in many as the accumulation of toxins is responsible for many of our symptoms.
Detox is not the answer to everything, the infections/metals/etc must be address also, but w/o an effective program in place, the antimicrobial treatment will most likely fail.
Amomwithope-Yes, pekana can be taken on abx, it does not interfere.
Jennie46- I feel that Heel is a great product, and effective, but perhaps not as effective as Pekana but the jury is still out.
Good luck.
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I often cannot tolerate the drugs given to me by doctors. I can't take antidepressants or even benedril or any of the sleep meds. I can't even handle coffee! I think, as others have said, some of us just have more sensitive systems.
Last year, after a round of levaquin I could not take any chemical at all without getting dizziness and headaches so bad I could not function. So I took herbs for 8 months which helped to keep things at bay. Then I restarted drugs in the fall. I have had no problem and it has been nearly five months, but I am waiting for the ax to fall any day now.
I used 1500 mg TOA free cat's claw, which I bought in capsules, and 1000 mg grapefruit seed extract. Both for lyme and divided into three doses.
As sick as you are, you probably need something to help you detox first. My closet is full of abx I cannot take either. It is frustrating and expensive. If it is an expensive drug ask your doctor for just a few to start with.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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map1131
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Member # 2022
posted
Randi, save the money on products that cause more misery and go with detoxing programs. No, detox is not easy road. But on the other side it is worth every dime you spent.
You need to go into these health food stores and start asking employees questions about people they know in the community that are healers.
They are out there. You have to go find them.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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