It seems that all I do these days is send out s.o.s. signals.
It is becoming terrifyingly apparent that I have become over sensitized to many antibiotics. The adverse reactions are killing me.
I cannot take bactrim anymore because it was killing my stomach, and other adverse events.
I cannot take ketek, and I'm not sure it is still on the market.
I cannot take the keflex, omnicef group due to adverse events, and is this the same group for rocephin?
I cannot take fluroquinolones due to neurological and tendon damage.
Cannot take Lariam after fluroquinoline damage.
Cannot take Malerone due to hypersensitivity.
Cannot take rifampin due to needing effexor and you cannot combine them.
Cannot take cleocin after long term, high dose caused my intestines to scream in pain and swell.
I am on bicillan shots but dose seems too low and neuro symptoms breaking through.
I searched newbie links for discussion on all natural therapies on lyme, and well as plain lists of antibiotics used in treating lyme. Did not see it. Probably in too much pain to study the page better.
Need another flotation device. Please send them on in full force.
Thanks to all of you, Mary
P.S. I am in my 5th year of lyme babs treatment, and have seen llmd in New York, Connecticut, North Carolina, and now Lousianna.
Posted by aiden424 (Member # 7633) on :
I am having the same problem with being really sensitive to everything. I find that starting out really slow and working my way up to a full dose has worked the best.
Kathy
Posted by Vanilla (Member # 11155) on :
It helps to eat applesauce or pineapple with meds that hurt your stomach.
Could it be because you have too many toxins in your body that you are so sensitive to the meds? Have you tried aloe?
Posted by BOEJR (Member # 1734) on :
Hi lymewreck,
One of the reasons why I first started my journey with hyperbaric oxygen was because I recognized that the body can not take years and years of antibiotics without a heavy toll to the body at some point.
I am not saying that it will work for you. However oxygen has healing qualities so it will allow you to recover as you go...
It will also allow the antibiotics that you are taking to cross the blood brain barrier. Allowing you to potentially take lower doses.
My opinion would be to find a group of natural therapies that have been effective for you and incorporate them.
BTW, I don't neccessarily expect you to move into a chamber. I know that this is not cost effective to many. However, I believe that after the first forty sessions you should be able to just do maintenance.
Miracle Mountain in NC has ONE grant available. Contact Robert Hartsoe and ask him if you would be a candidate.(Let me know if you need the number)
The only other place that comes even close in cost is my place. A bit too far for you though...
You can also incorporate FIR Sauna, I have found it effective and use it after my sessions. It helps to detox the body.
This is the path I chose, you must find what works best for you.
Blessings,
Julia Posted by lymewreck36 (Member # 4395) on :
I would need the number for the place in NC and hyperbaric oxygen, but the distance seems to make this impossible. It is 12 hours from me, and I have three children.
Also, what is FIR sauna?
Is it the same as a hot bath?
Posted by Myco (Member # 9536) on :
Just do the MP. It is saving alot of people who have tried everything else.
Posted by lymewreck36 (Member # 4395) on :
MP = Marshal Protocol? I'll do a lymenet search for info?
Does it include drug therapy or is it all natural, or a combination?
Thanks
Looking for cyst busting alternatives to flagyl and tini which I cannot take. I heard stuff about pulvarized grapefruit seeds. Anyone else heard of this and where can I get it?
mary
Posted by liz28 (Member # 4946) on :
Question: which anti-candida treatment do you take? It sounds like those drugs could really wipe out everything in their path.
Posted by lymewreck36 (Member # 4395) on :
I take diflucan and have been taking it for years now, along with nystatin. I take a 200 mg pill twice a week, and two nytatin pill a day. Dr. H. started me on that in Dec. 2003, when I first came to him.
I now see DR. F in LA, and he is not big on this, but said he would continue it since I feel it is essential.
Mary
Posted by bejoy (Member # 11129) on :
I downloaded lots of information from Dr. K. (an LLMD in WA) who has a complementary approach to lyme.
Perhaps some of his protocols could be easier for you to tolerate, or could you help heal from or respond better to antibiotics.
Posted by lymewreck36 (Member # 4395) on :
Oh please, if you know of all natural protocals or natural ways to tolerate treatments, send it one.
Thanks.
Posted by bejoy (Member # 11129) on :
I'll PM you a link.
bejoy
Posted by Vermont_Lymie (Member # 9780) on :
Try amoxicillin?
Posted by Health (Member # 6034) on :
You are in your 5th year and not well?
Geez, that is tough. I would say that that the bloody lyme should be dead by now.
POOR soul!
Have you read Dr B's Guidlines? he talks of using other antibiotics, as Rocephin can be a treatment failure sometimes, so says to use
other antibioitcs. Not usre if you have seen this, thought I would mention this. All this work and you are not better, somethings wrong,
Rife if you cannot do antibiotics, it helped me, but now back on antibiotics. It was the ONLY thing that helped my breathing back then,
Maybe rife? if you cannot tolerate antibiotics, then go back on antibiotics when your system has healed from the abuse of these drugs.
See a ND maybe? to take something to heal your gut, or maybe it can heal itself.
Maybe you need a Medical Intuitive. I called a psychic spiritual medium, it was this woman that told me to get checked for lyme, 4 years ago.
I never was one to consult these psychic mediums, but this one was told to me to be veyr good, a friend of a friend.
Saved my life. Maybe you need something like this, or ART testing? something to figure out what they heck is going on,
and why are you not better.
Not sure if you have done IV.
Sometimes when we are ill like we all are, we use other avenues that we have never used, or done.
I have, and it has helped me.
Take care and hope you get to the bottom of this. No stomach can withstand all that.
Trish
Posted by Health (Member # 6034) on :
Another thing.
Make sure you are not taking anything that is making the treatment not effective.
For myself, I had stopped everything but the antibiotics and probitoics, and yogurt, and then went from there, just to be safe.
Maybe this is not true for you, just sending in some more info.
Trish
Posted by lymewreck36 (Member # 4395) on :
I have taken at one time or another the following:
Diflucan Nystatin yogart plus ascidolpholus digestive enzymes artimisin l-carnitine various vitamins alpha lipoic acid
five years later......struggling
Is there anyone else still struggling this many years later?
My three daughters are still struggling even though they have made much progress.
Thanks, mary
Posted by CatWoman (Member # 10900) on :
LymeWreck,
Sorry to hear of your troubles! I noticed you asked about FIR saunas. FIR stands for Far Infrared. This type of sauna is supposed to be very good for detoxifying and it's much easier to tolerate than a traditional sauna. The infrared sauna as I understand it heats your tissues without heating the surrouding air so you don't feel like it's too hot. I personally cannot handle traditional saunas or steam saunas (don't know anyone who can handle steam though) and FIR saunas are okay for me.
Hope you find something that helps!
~cat Woman
Posted by gardenoflyme (Member # 9261) on :
I am into my 6th year of treatment(went misdiagnosed for 3 1/2 years) and am actually doing very well. Only an occassional day or two each month is uncomfortable.
I really feel for you. I can honestly say that at 4 1/2 years of treatment I didn't think i would ever get well.
Then I changed docs--something you have done a few times I see. The difference this time, for me, was the addition of non-abx treatments. I really feel they have given me the boost that i needed to take additional steps up the ladder of recovery.
What was added?
Liver support--Himalaya liver care--works better than milk thistle and much less interaction with drugs. I noticed almost immediate better sleep with this. With the better sleep I felt like my body was working so much better.
Fish oil--high grade
Blood thinners--We used chinese herbals to help with cholesterol and boluoke to thin the blood without having to use the more potent heparin.
Homeopathic products as needed.
But you do need a doc knowledgeable in lyme as well as these alternatives. Blood work is needed to ensure that even these herbs, supplements don't do any harm.
We used many blood tests to even determine what supplements were needed. Once we found out where i appeared to have problems we addressed them.
Wished I could offer very specific info but we are all so very different.
Bicillin was one of the best drugs for me though. Tough, tough herxes, although i did use it at the beginning of treatment.
I wish you could find what works for you.I cannot imagine having three children and doing this. I have two children, but they are college age and up now so were in middle and high school when my health deteriorated and at least were somewhat self-sufficient. Still, it hurts to think of what time and experiences we all miss due to lyme disease.
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