I was diognosed with M.S. 14 years ago and steadyly over the years I have declined to using a walker in the home and the wheel chair when I shop.Last May I was very hopfull I was starting to feel stronger was having better balance and was even venturing for short shopping trips holding on to a cart.
Then last October when I was at My yearly appointment with Dr.C They did a weigh in,I new I had lost alot of weight since treating lyme but the #98 was to thin,so over the holidays I indulged in fatning foods and wile I did gain a much needed 5 pds.I also got a bad case of yeast.Then in January I did one dose of plaqunil/biaxon' first time.By doing that I had a major exaserbation and was bed ridddin for monthes.
I have tried to get off abx for awile to clear the yeast,the time before last I made it for 2 weeks then I had my right foot go totaly numb and I had a numbing pain behind my left eye and the worst of it was a newer syptom that I have had since treating lyme,it will happen when I try certain ABX, for those of you know is trigemial neuraliga for those that dont its a horrid shockinging pain that strikes my mouth,teeth,tounge and lately my right ear,it is dibilitating and I had to get back on abx right away.
So last week I call Dr.C office to see what to do to start feeling better,the abx and yeast are making me weaker and weaker.I can barly use the walker anymore and have been relying on the wheelchair to much.I havent cooked a meal for my family for atleast 6 months.I wash my hair once a weak,bath maybe twice, im just to weak to shower.
Anyway all Dr. C said was stop all abx and go see your local Dr.
Im sorry if many of you dont agree, but I dont like him much! I tried to go off abx anyway it lasted 2 1/2 days this time.And on Monday night I was in the emergency room in agony over the trigemal.So anyway I am back to just 1 zithro a day to get by.
I dont want to go back to see Dr.C next month,I dont even think he knoes who I am, he has so many patients now and I feel like a number and name.He is to inesesable to me and has done little to help me.
I think I would like to try bicillin LA shots but DR.C would not let me do them at home,I even arainged for a home health nurse to come out to administer,but he denied that to.I am to weak to go to DR.office several times a week and besides that the local DR. told me that would not help me with that anyway.
So as you can see I'm in need of a new Dr.and a new game plan because im fading fast here.Do you think the bicilin would help the yeast? And any sugestions with the trigemal would help. running out of hope,Terri
You will find info if you do google search.
Swanson Vitamin's brand of acidopholis & ProBact-4 are reasonably priced. I get the two (in a set) for $9.99 4 billion cells of acidopholis and the bacti has total of 4 billion cells too.
Here's the link, I hope it helps.
http://www.swansonvitamins.com/webapp/wcs/stores/servlet/ProductDisplay?storeId=10001&langId=-1&catalogId=10051&SourceCode=INTL097&productId=16002&healthCondition=013&healthConditi onName=Digestive%20Health&categoryId=16143
I was diagnosed MS for 17 years before finding out it was lyme induced. Hang in there. Will keep you in my thoughts and prayers.
Is the zith helping? i'm flaring everything from nerve pain to joint pain to the worst emotioanl stuff I've ever experienced. Totally freaked me out.
I hope you find something that helps soon, sorry you're having such a crappy time.
i'd follow the advice and stop the abx. go through the rough time for as long as possible. the inflammation alone will make things worse. ask Dr. C. what anti-inlamm. is safest.
both fluconazole, and macrolides affect heart function in a way that i forget fo rthe moment. this may be exasperating some of your symptoms.
you may want to call him again.....remember, we are all human.
on the other hand....since your pain is so debilitating...he may want you to see yourlocal MD for pain management, etc.
At one point he was primarily a pain Doctor and this may be what he is thinking
Would you like to speak with someone over the phone?
I'd be willing to talk with you
e-mail me and let's have a chat...on me
Trout
PS.....in situations like this.....the spoken word has a lot more power
Yeast Problem Diet too
Oral Yeast
Oral Yeast
ZIPZIP Thanks
I would get some diflucan also for the yeast and take lots of acidophilis at least 2hrs after abx or 2 hrs before. and where you can fit it in where it dosent interfer with abx's.
You sound pretty sick. I'm sorry you feel so awful. I went through a similar experience - not quite as intense. I had Systemic Candida from the abx. I dropped 56 pounds in 3 months. I had to stop abx to help clear the Candida. I was extremely ill and in pain while off the abx but, it had to be done.
I did eventually go back on IV meds, which seemed less harsh on my stomach. I have since switched to IM Bicillin. However, my nurse would absolutely not give me single injection of 2.4 mils. She insisted that I get 2 @ 1.2 each. Why? Because I was emaciated, had no muscle mass. It is a pretty big needle and you really do need some muscle to absorb the med. You also need a skilled nurse and to be in a controlled environment because you are so thin. The needle could nick a nerve or artery.
I workout every single day to rebuild muscle so that I can continue to get the injections. I could not walk for a bit but I forced myself to exercise,even just a stretch or 2 a day. I can now run a couple of miles and cycle about 5. I have to do this to both stay alive and to be able to get the injections.
As for Bicillin and yeast, well, it is still an abx so you will still have to be vigilant about your diet and probiotics. Bicillin will, in no way, help with your yeast problem.
Feel better. Find another MD if you are uncomfortable with your current LLMD. My MD sort of "fired" me when I was at my sickest with yeast and pain - sent me back to my PCP. My PCP was able to help manage my pain and get my body to a better place. I then went back to my MD for Lyme treatment. I may have lost ground but, I was whining and in pain and my head was not dealing very well. Sometimes a break is good.
Take care.
Maybe your weight loss is yeast, but it might be worth looking into the babesia issue. A blood smear on a slide looked at under a microscope is the best way to detect unknown species of babesia. Bowen Lab in FL is state certified to do this kind of testing for babesia.
I have to be cautious in responding to your post, as my opinion on this subject is very strong, and goes counter to the opinions of a lot of people on this board who I respect.
My personal experience is that five years ago, I came down with Lyme and two tickborne co-infections, babesia and bartonella, and was on my deathbed within six months. No mainstream doctor would treat me. In desperation, I threw myself at two area LLMDs, one of whom has a reputation as a real hotshot. The only research I did was to check that they took my insurance, and to call and ask their receptionists, "Do you use Dr. Burrascano's protocol?"
Without going into the details of what happened with these doctors, I was almost completely disabled for five years, because I was on a lot of drugs that looked high-powered on paper but didn't actually treat what I had, or because my doctors switched treatments every time I started to get well. I ended up doing the mercury detox and tons of wacky herbs (along with some terrific ones), and nearly every antibiotic described on Lymenet.
I burned through all my savings, and much of my retired parents' money as well (they ended up selling their house). I also had to leave my real job as an editor and work as a graveyard shift secretary at a law firm.
But I also went back to grad school part-time, using Thera-flu to temporarily lower my fever. There, my confidence improved to the point where I began to question all these doctors. Believe me, I was so terrified of dying alone in my tiny apartment, I used to literally beg them not to desert me. They were making well over $400 a visit.
At the beginning of Year 4, I made a point of reading every single Lymenet post going back to 2000, and found out which drugs I was supposed to be on. Soon after I requested them from my doctor at the time, it became necessary to find his replacement right away.
My current doctor is not a member of the Lyme community, but is a friend of a top LLMD. He charges $115-150 per visit. During my first visit, I brought a bag of all the antibiotics bottles I had, to prove I was really a Lyme patient, and lined them up on his table. He wrote a six-month prescription for all of them, and told me he would only be my doctor if I graduated, got a job, and started mild exercise, because he wouldn't put up with someone whose whole life was about illness.
That was five months ago. While I still have a ways to go, and may end up having to take maintenance antibiotics for life, I have gone from being disabled to working seven days a week in my field, jogging, cautiously starting weight lifting, making new friends, and lusting after the local blonde.
On a board like this, it seems appropriate only to make friendly suggestions which you are welcome to take or leave, and to describe what I'd do in your shoes.
First, you should know that two excellent Lyme antibiotics, doxycycline and minocycline, are regularly prescribed by dermatologists for years at a time. Mino is the stronger drug, but it can also have severe side effects in Lymies. Do you have any nice local dirt that you could take a bath in?
Doxycycline is safer, and cheap at about $20 per month out of pocket. The Lyme dosage is 200mg in the morning, and 200mg at night. You have to take the pills about a half hour after eating a large meal, and avoid taking them with dairy products. These drugs usually don't cure Lyme, but they do reduce the symptoms so you aren't completely incapacitated, and take away some of the panic at making the right choice under pressure.
Read every single post here, even the ones that don't seem to have anything to do with you. It could save you thousands of dollars, and years of your life. Like for example, if you have longstanding fibro symptoms, you may want to explore something called celiac disease, which often causes fibro. Here's a great magazine for celiac people:
http://www.livingwithout.com/
I respect the diagnoses of both mercury toxicity and thyroid, and believe mercury can be a lethal problem. However, my personal, non-medical opinion is that these are secondary issues, and that while they can wreck your immune system and make you more susceptible to chronic Lyme, they aren't the cause of it. In other words, they can become a reason to tack on months or years of seeing your doctor.
My one-sided bias is that you address them after you've taken care of Lyme (which can temporarily cause thyroid problems), the co-infections, allergies, and other problems that might require antibiotics or lifestyle changes like a different diet. LOTS of people have mercury toxicity in our smoggy society, but they don't have positive Lyme tests, or collapsed immune systems. And if you are fortunate enough to get rid of the Lyme first (not everyone does), you won't be afraid to go see an expert in thyroid problems or environmental illness, who may cost less than a Lyme doctor.
Also, if you walk into your current doctor's office and request certain antibiotic protocols, the doctor may very well give them to you. The Lyme community is very cutting edge, and no one person has all the answers. Your doctor may be delighted that you are so proactive, or will at least respect you more as a person who knows what's what.
[This message has been edited by liz28 (edited 26 August 2005).]
As for the yeast....no abx will help yeast. DIET is the biggest factor. Stay away from bad carbs and all sugar and fruit for now.
You're welcome to call me too. I'll return the call so it's on me. Just email me and we'll set it up!
Here's some great info on yeast control.
Candida elimination: http://flash.lymenet.org/ubb/Forum1/HTML/021412.html
Lyme symptoms list compared with yeast symptoms http://flash.lymenet.org/ubb/Forum1/HTML/021202.html
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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
I, too, have been a patient of Dr. C for several years now, but, I have not returned this year as I feel and felt for quite some time that he didn't even know who I was either and that he has way too many patients currently.
But, hang in there and get treatment as best as you can. It took me a tad over three (3) years on lots of different abx to get to where I am feeling today...very well, in fact.
Am I in a remission, who knows???!!! what ever label put on it, I do know that if I had not continued for the long length of time that I was on abx, I would not be feeling as well today.
Hey, guys, Trout, Tree, Liz, Lou and my dear friend, Lymetutu, showing her arz, LOL!!!
Hang in there Kissis, and know that you are not alone.
Later, guys, have a great weekend.
Rosemary
quote:Hey rosesisland2000
Originally posted by rosesisland2000:Hey, guys, Trout, Tree, Liz, Lou and my dear friend, Lymetutu, showing her arz, LOL!!!
Hang in there Kissis, and know that you are not alone.
Later, guys, have a great weekend.
Rosemary
I'm sorry you are so sick.
Do you have a local doctor? It sounds like you need support close to home. Did you get any help at the ER?
Lymetoo has good information about the yeast-free diet.
How often did you see Dr. C?
[This message has been edited by pab (edited 26 August 2005).]
I will look into the oil of oregeno and chlorella.
To Trueblue - I tried neurtin, It made me even more weak and tired,although it did help my stiffnes,felt like a wet noodle.
And the only reason Im on the zith. is that it controls the trigeminal'
To Beachcomber- Last year I was working out regulary.I hope I can again someday,I have lost so much muscle mass.
And yes Lou' I'm pretty sure I also have babesia. Dr.C treated me with meds for it and I responded by herxing and feeling like crap but then he switched me once again to yet another abx.
To Pab- The ER was a waste,told me half hour wait.After 1 and a half I left.
To dnc-Hope your doing well now.And that you have responded well with lyme treatment.Wish we would have found out lyme much sooner!
To Rosesisland -Glad im not the only one that feels that way toward DR.C.
And by the way I have read your post over time and saw that you lived in ST.Croix.I also lived there for a short time.
So good to hear that your doing so well...
To liz 28 -I have also been there with my lyme DR. swiching abx too frequently with me,I also have a big stash to prove it,
I do have some minocycline left,I think I might try it again.It was working well at first but after awile on it I felt so spacy and my head felt like exploding.
I'ts good to hear your doing so well now, your giving me a small glimmer of hope if anything.