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Posted 9/2/2010 9:16 PM (GMT 0)
I've been on various antibiotics for over a year and obviously NOTHING has gotten any better.  Most recently I've been on Cipro, but my symptoms have all come back so I quit taking the antibiotic - I figure there's no point taking it if it is doing nothing.  A few symptoms had disappeared or reduced significantly up until about 2 weeks ago, and now they're all back, including the pesky huge sty in my lower right eyelid and all the brain fog, etc.  Has anyone else experienced a relapse while taking antibiotics?

 

Posted 9/2/2010 10:04 PM (GMT 0)
Hi Razzle,

I have done 9 months of antibiotics and was starting to see some improvement this past month while taking Ceftin and Mepron. This past Monday I felt the best that I have felt since getting sick in June 2009. Unfortunately, it didn't last and Monday evening I started feeling worse than the usual bad. I guess my expectation was to see a very gradual improvement over time until becoming totally symptom free.

This has not been the case. I guess eventually I will end up back on IV-Rocephin and consider doing IVIG to get rid of this neuropathy.
Many people talk about long recoveries. I would really like to have my life back, NOW.

Let me know how you make out without the abx, I would love to take a break.

Hope you feel better soon,

Gary
Posted 9/3/2010 2:19 AM (GMT 0)
Razzle - I don't think Cipro alone will do it. I have been taking Cipro combined with amoxicillin. Dr. appt today and he says after the next pulse, he's changing to doxy and amoxicillin because "I'm not sick enough" and he thinks the bugs are getting resistant to it. Could that be your case too?
Posted 9/3/2010 2:27 AM (GMT 0)
Yes, it is possible the Lyme became resistant to the Cipro.  I don't have as many options for antibiotics because I'm allergic to sulfa, erythromycin, and vancomycin, and had too severe a herx on Doxy (gut tried to shut down again).  So I'm not sure what my doctor is going to change me to - saw him Wednesday and he said he'd discuss with the pharmacist at the home infusion co.   I just wish someone had figured all this stuff out a long time ago before I got so many allergies to stuff!

Thanks for the replies.

 

Posted 9/3/2010 2:33 AM (GMT 0)
Just curious, Razzle - were you "allergic" to these antibiotics prior to Lyme, or could the "allergies" be a Herx reaction? I'm asking because I had an "allergic reaction" to my second try at Minocyclin, but my LLMD said it was a Herx (an allergy would cause the rashes, welts, and swelling I experienced, but it would NOT cause disabling pain that kept me in bed for days).
Posted 9/3/2010 2:41 AM (GMT 0)
I've had Lyme since age 5, and was not on antibiotics before that except 1 time for an ear infection when I was too little to remember. My Mom did not mention an allergic reaction to that antibiotic, but I don't know what antibiotic it was. The only known allergy I had prior to age 5 was to soy (gave me a rash).

So basically I don't know if there were any antibiotic allergies prior to getting Lyme because of how long I've had it.

My reaction to sulfa is a severe body-wide rash that looked like wiggly red lines all over my skin from head to toe.

The reaction to Erythromycin was immediate itching on my chest, then diarrhea, intense weakness and vomiting, and my chest and belly turned beet red and blotchy. My Allergist said it was "redman" syndrome, but there was more to it than just red skin. IV Benadryl stopped the reaction pretty quickly.

The reaction to IV Vancomycin occurred about 30-40 minutes into the infusion and it started as itching of my neck, shoulders, & upper chest, followed by severe intense insane pain in my bladder that radiated to my back, and down both legs to my toes. I was writhing on the chair and hollering it hurt so bad, and I have a high pain tolerance! Benadryl stopped this reaction pretty fast also. Yes, this one I suspect may have been a herx but we don't know for sure.

I also have a lot of allergies to other meds, herbs, supplements, preservatives, foods, pollen, dust, animals, etc., so it could have been a reaction to something else besides the active ingredient, too...we don't know for sure.
Posted 9/3/2010 3:41 AM (GMT 0)
Hi Razzle
I didn't know u had such allergies what a drawback.
Back when I was on abx I would get well for awhile then I would get sick abx no longer working, smart little devils those spirochetes. anyway we did a lot of changing as necessary and I would also intermttently go off to see how I could handle life w/o abx it took awhile until I went off altogether, been off for few yeas.

do you take anything specific besides abx for brain fog?
Posted 9/3/2010 3:49 AM (GMT 0)
No, nothing else seems to do anything for it that I've tried...but there are some things that help some people that I cannot take due to my allergies to soy and fish, such as phosphatitylcholine (derived from soy) and fish oil. I don't do well with flaxseed oil either, but seem to be ok with the flaxseeds...but the seeds don't help the brain as much as the oil.
Posted 9/3/2010 11:04 AM (GMT 0)
Hi Razzle,

I'm really sorry that you have felt no improvement using antibiotics.  I don't know what advice to give you..  Maybe it's time to look into alternative medicine completely and go on a strict detox regime.

I hope you feel better and find something that works for you,

Denise

Posted 9/3/2010 11:18 PM (GMT 0)
Deejavu,

Thanks for the advice.  Unfortunately, it was Buhner's Protocol (specifically Japanese Knotweed) that put me in the hospital in 2008 unable to eat or drink.  And before I knew I had Lyme, I had used many, many herbs and such but nothing really seemed to make a difference in my Lyme symptoms.  My Lyme doctor is a Naturopath, and even he thought that antibiotics would be the way to go for me, given my reaction to Buhner's Protocol and all my allergies.

I wish I could detox...we do not have a functional bathtub, I cannot take showers due to having a PICC line, and I have no way to take a foot bath either.  I am alone most all the time and have no ability to lift a foot bath bin.  Plus, last time I took a foot bath, I was wiped out for days after.  I also cannot go in a Sauna or Hot Tub with the PICC line.  The skin brushing hurts terribly, I'm too sensitive.  And I have methylation defects that make detoxing difficult.  Colonics have been the one thing I could do, but financially it is too much now (insurance won't pay for them), with the cost of health insurance premium increasing by over $130/month and no pay raises for the last 2 years.  Our expenses exceed our income by about 1000/month, and that is bare minimum, no budget for anything beyond bare minimum necessities.  I need to get a job but cannot work, and do not qualify for SS disability.  I am at a loss for how to deal with this situation.

Posted 9/3/2010 11:31 PM (GMT 0)
Hi Razzle,
I might have already asked you this but, have you considered Acupuncture?
Posted 9/4/2010 1:12 AM (GMT 0)
Razzle,

I haven't read the other comments but was wondering if you have ever tried a cyst buster like Flagyl yet?
Posted 9/4/2010 3:27 AM (GMT 0)
Traveler,

I cannot do acupuncture due to it causing severe nerve pain. I used to use it to help with my gut, but haven't been able to tolerate it since I got RSD (Reflex Sympathetic Dystrophy) - the RSD is in remission now, but the acupuncture re-activates it.

The last time I was on Flagyl was in 1988, way before I knew about Lyme. I would be interested in trying it again, so will talk with my Lyme doc about it next time I see him. Thanks.

Thanks,
Posted 9/4/2010 12:09 PM (GMT 0)
Hi Razzle,

I look at the big picture and what has antibiotics done for you except weaken your immune system and cause you even more problems?  I'm not a doctor but it just doesn't make any sense to me for you to keep putting those poisons in your body causing more toxins and weakening your immune system even more.. 

What I find interesting is that in the U.S. we are "brainwashed" into taking antibiotics, I know I was..  I was given antibiotics most of my young life for swollen glands, ear infections, etc.  Doctors gave me antibiotics like they were candy.  I think that in the U.S. pharma is just big business. 

When I read about alternative medicine most countries do not use antibiotics "With a holistic approach to well-being, Naturopathy believes that the three physical entities - the natural body, the supernatural soul and the mind- must be integrated through natural energies. "A recent survey shows that 76% of global drugs are consumed by USA and European countries. We believe that freedom from diseases and drugs can only be achieved by living a natural life style."[4]

The quote above is from this article:

http://www.associatedcontent.com/article/1433608/alternative_medicine_in_select_countries.html?cat=68

I took a huge risk by taking Dr. Jernigan's botanicals because of the alcohol in them but by following Dr. J's instructions on removing the alcohol I was fine and got totally better without antibiotics.  

I also read an article a while back stating that alcohol is used is producing antibiotics but right now I can't find that article..  So it's very possible that you are putting alcohol into your body just from antibiotics.  

Maybe it's time for you to take a risk and stop putting poisons in your body.   As far as Buhner, I liked his book because of his views but I would never use any of the herbs he recommends for I don't know if they were tested like Dr. J's botanicals are tested.  

It's up to you... You can become your own advocate  if you choose too or just keep doing the same old thing which hasn't helped you but has only make you sicker. 

I'm sorry if I come on strong but I care about you and want to see you get well.  

As far as the foot basin, for under $10.00 you can get what I use, an inflatable foot tub (I bought an Avon one from Ebay).   Very easy to use.  

I hope you choose the right road for your own well being,

Denise

Posted 9/4/2010 1:18 PM (GMT 0)
I cannot lift a foot bath basin when it is full of water, nor can anyone else living with/near me (my Mom has a hernia, and my husband has back problems that are aggravated by lifting). If I tried to lift it, I would drop the basin and make a disaster in the house. Doesn't matter what material the basin is made from, it is not a possibility for me to do. And I have no way to fill it or drain it if it is already in a place where I could use it.

I took herbs, homeopathy, vitamins, got various forms of energy medicine treatments, used "healing" magnets, chiropractic adjustments, etc., for years and years (since about 1980 - it started with chiropractic adjustments for "sciatica" and herbs for bedwetting - neither of which did anything to help either issue) but my health has continually declined in spite of all that I have tried and all the "experts" I have consulted (dozens and dozens of doctors, naturopaths, & other kinds of health practitioners). The only thing I had not tried before antibiotics was the antibiotics! So now I don't know where to go from here. I don't have the funds to go see Dr. J., and his remedies contain herbs that I am allergic to in addition to the alcohol (licorice root, etc.). Furthermore, I don't know what the herbs would do to me now - I don't want a repeat of 2008's hospitalization if at all possible.

I'm looking in to more homeopathic remedies for this blasted disease, specifically Ledum and Aurum Arsenicum (from Peter Alex's book, "The Homeopathic Treatment of Lyme Disease"), so we'll see where that leads me...hopefully to better results than what I've gotten so far.
Posted 9/4/2010 9:17 PM (GMT 0)
Hi Razzle,
Do you think that it is possible to have not found the 'right' practitioner in the natural healing therapies? For me it has taken a few years to find the right acu doc again. Anyway that was just a thought.

My acu doc has allowed me to borrow this book until I can finish reading it. The reason I'm mentioning it now is because I read of your interest in the Homeopathic route. The book I'm reading is from a Homepathic ND - Joseph Pizzorno. The book is titled "Total Wellness". I found his online resume;

www.drpizzorno.com/resume.html

Anyway, it's just a thought.
Posted 9/5/2010 9:30 PM (GMT 0)
Hi again Razzle,

Why lift?  What I would do is take a cup and "scoop" out the water in the foot tub.  I also would not fill the tub up all the way, just enough to cover the bottoms of your feet which is not much water. 

Also, if I were in your shoes I would e-mail Dr. J. and tell him about your allergies as I have known Dr. J. to make special botanicals for people, yes, he is that kind of doctor who goes the extra mile because he has a big heart and really cares.  What do you have to lose?

Hang in there okay?

Denise

Posted 9/5/2010 9:32 PM (GMT 0)
Traveler,

I am smiling here because I thought the same thoughts you did.. perhaps Razzle needs to find a different ND.   Just like any other doctor, there are good ones, very good ones, and fantastic ones!   LOL!   

Posted 9/6/2010 12:22 AM (GMT 0)
I don't know. I tried to go to a more well known Lyme-Literate ND here and she wanted to put me back on the same herb that put me in the hospital! I don't think that's a good idea...I don't care to repeat that experience.

I cannot lean over due to the feeding tube in my stomach, so don't know how I'd be able to use a cup to empty the foot bath bin. And if I leave it in the bathroom with water in it, I'd be unable to use the toilet - our bathroom is very tiny...heck, our whole house is tiny (about 750 square feet).

The last time I contacted Dr. J., they basically told me I had to come out to see him in person because my case was "too complicated" for long-distance help.
Posted 9/6/2010 12:27 AM (GMT 0)
I really hate that you are not feeling well. I hope you get better soon!
Posted 9/7/2010 6:44 PM (GMT 0)
Thanks everyone for the replies...
Posted 9/7/2010 7:36 PM (GMT 0)
Razzle,
With as sick as you are, are you sure there is no way for you to work out some kind of a payment plan or whatever with Dr. J? Maybe find out just how long you will be absolutely required to stay to get treatment started???

You have been quite ill for a while now, haven't you???(I don't trust my little Lymie brain). I do believe that you really, really need to get some kind of help, soon.

As always, just a thought.
Posted 9/7/2010 8:45 PM (GMT 0)
Razzle:

I am so sorry you are so sick! I am sending prayers and hugs your way! Why must we go through all this??? 

I suggest you talk to people in your local forum and find someone that uses a rife machine--maybe your body is so exausted and this may be just what you need!  Maybe someone will let you try theirs and see how it is working out for you!

Post Edited (Simela) : 9/7/2010 2:56:24 PM (GMT-6)

Posted 9/8/2010 10:37 AM (GMT 0)
Traveler,

Yes, I've been sick for a long time.  First symptoms started over 30 years ago, and slowly my health has deteriorated since.

There are no funds for a trip to KS from where I live...our expenses are too great to add this burden.

And the more I look at what Dr. J uses in his clinic, the more doubts I have that I'd even be able to walk into the building without becoming even more ill...I react very strongly to negative ion generators (Biomat, etc.), anything that generates ozone (even copy machines), and some essential oils/aromatic substances in the air.  And there are things he does there, such as massage & sauna, that I would be unable to participate in due to the PICC line.  So I would hate to go all the way out there only to discover he couldn't help me enough to have bothered with the trip.

Simela,

When I get an answer to that, I'll be sure to let everyone know!  Yeah, I intend to ask around in the local group about the rife stuff.

Thanks,

Posted 9/8/2010 5:18 PM (GMT 0)
Hang on, Razzle. There HAS TO BE someone out there that can help you!!!

(((hugs))) and warm, healthy thoughts.
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