posted
So my life is falling apart, i been hanging in to see a lyme literate doc. Well i finally did.
Background quick as possible: I have not been tolerating biaxon due to switching antibiotics months ago and it screwing my stomach up. I have been completely dissociated and losing my brain function while on nothing, which has not come to be tell after i stopped taking antibiotics. I have been under severe stress as i have no help at all, no money and been pushed into being homeless, just found a home but i cant sleep there due to nosie issues, so i have to move again. All this time im slowly losing the ability to deal with anything, as this brain thing has only been THIS severe in the past few months, consequently causing things to get so out of control. BTW if i take a biaxon every three days now it will clear up my mind, but then i seem to get anxiety or cant sleep which is odd as i was handling it fine before. It still is not now agreeing with my stomach. And yes im doing everything i can besides not having the money for more expenxive probitoics. Im at the point where its like you want me to go and steal them, i basically take them and then return them to wf so i can lenghten the time i can afford them. :
So i see the doc, i tell him my history, how i have tried the biaxon and plaq combo and i was severely anxious on the plaq...before heart racing. I told him im not handleing the biaxon now....
He says suck it up, this is the only treatment option, your stomach is not well cause your not taking both, and deal. Just deal. He says taking small amounts of anything is just gonna aggravate your symptoms, and not cure anything.
Now this is not what i expected from a lyme literate doc, any other doc yes, but still....
Now since i have to work with what i got, ive been taking grapefruit extract like 2 drops a day, or more just to see, i cant really say whats causing what at this point as i went a few weeks with out sleeping prior to this week and half...Due to stress leading to a breakdown.
So im here still very very tired, feeling like i have a sinus infection out of it feeling, disscociated. Just wondering what do i do now? is small treatment bs, should i listen to this guy, should i risk another major anxiety attack testing this med again? Can i afford this, but im in pain and feel horrible and want my mind back, oh yeah and where am i gonna live... ARGHH SEE THE amount of stress and thoughts..
Now do i test the plaq on its own? And see again how it settles with me, or do i just wait it out... I dunno. SRSLY people ***, im so lost..
[ 03-09-2010, 03:10 AM: Message edited by: Anna Lee ]
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
I am so sorry you are having such a hard time.
I don't think I agree with your doc. In my opinion treating with low doses is better than no treatment and if you stick with it you should be able to tolerate higher doses over time.
Hubby always said biaxin was a gut busting drug and that is one of the reasons he never took it.
Have you taken doxycycline? -- that might be easier to take -- and be sure to take your meds with food. You may not absorb quite as much but it is better not to get your stomach too upset or you just create more problems.
Something cheap and easy you can do for your stomach is to take some aloe vera gel. 1 or 2 ounces per dose in a little water. You could probably do this 2 or 3 times a day. If you take too much it will give you diarrhea so just decrease the dose if that happens.
The Buhner herbs might be easier to tolerate but it is hard to say. I would try adding in one at a time -- start with sarsaparilla which will help with detox. Then cat's claw which might also help with G.I. issues. Then resveratrol and lastly andrographis. Just go slow on making any changes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
I too disagree re harsh herxing - I think it's too difficult to handle.
Could others please weigh in here on other options for Camber - like who to see in her area, what to do re treating neuroLyme? Thx -
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Wow, Camber. My heart goes out to you.
I recentley tried Biaxin as I had been on Zith for over 6 months and felt that I hit a Plateau. I tried it for a week and I had yeast and other probs. Dr. B. also mentions this in his guidlines about Biaxin. I went back to the Zith as it is much more mild, but I'm at a higher dose.
Possibly if you take a lower dose it won't be so harsh. Plaquinel makes the medicine effects far stronger. IMO your "gut" feeling is correct.
I'm with Bea. Can't you get some Doxy or possibly Azithromycin which is also a macrolide but more mild?
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I also want to add that not getting sleep is probably the worst possible thing for me if I'm sick. Take something for sleep. Sleep is very important!!
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
sorry i havent gotten back i will respond when my heads more clear and i have more to report after trying the plaqunal for itleast a week on its self. Ps i am doing grapefruit seed extract everyday 3 drops and now up to 6 instead of the biaxon.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
I was unable to tolerate starting out on the full dose of these meds. My LLMD goes with philosophy of "slow and steady wins the race"
For me it is essential. Mentally I could not take the pain (even on pain meds)nor could I mentally handle being bedridden. starting on lower doses enabled me to retain function and improve.
I have been slowly improving--maybe this won't work for everyone but it is getting me better.
Posts: 207 | From NH | Registered: Jul 2009
| IP: Logged |
quote:Originally posted by purplemom: [QB] I was unable to tolerate starting out on the full dose of these meds. My LLMD goes with philosophy of "slow and steady wins the race"
For me it is essential. Mentally I could not take the pain (even on pain meds)nor could I mentally handle being bedridden. starting on lower doses enabled me to retain function and improve.
I have been slowly improving--maybe this won't work for everyone but it is getting me better.
It worked for me!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
:crys: i need help. im so messed up,,,My brain is slipping, i dont know what to do, i have no support/family or doctor or money...I just want some way to know how to get better. My brain is slipping its the scariest, i feel like im losing my mental function. I really dont know where to start and ive been fighting this for over 10 years only started treating this year, but im tired and more out of it and lost then ever, with out the mental function to make the next move.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
Ps currently im taking 3 drops of grapefruit extract a day, and half a plaqunel every other day.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
My heart is with you, my friend. Let's do this. You ready to attack this seriously?
Alright, I'm pretty new to this as well. So, I'm with you on the struggles. I have a few suggestions to help you prepare for this challenge.
First, you need to mentally prepare for this. I would like you to research a book called The Presence Process by Michael Brown. Read the reviews about it on Amazon, and purchase the book. Commit to his mental relief process. It will help make you stronger through your recovery.
Second, let's look at your lifestyle. Are you doing anything that is unproductive to your recovery? Are you drinking? Are you eating a bad diet? If so, that HAS to change.
I made strong improvements just switching up my diet. Chicken, steak, beef, rice, beans, LOTS of vegetables, fruits, dark chocolate. THAT'S IT. It's been like this for almost 3 months. But that progress I've made, it's like a lucky charm. I don't even want to go back to eating crap now, I'm doing better.
Third, you need supplements. Ones working well for me are:
Vitamin B, C, D, E (I eat lots of carrots, so don't need A) Fish Oil Glucosamine/Chondroitin OLIVE LEAF EXTRACT (worked up from 10 drops to 65 drops twice daily) Milk Thistle Magnesium
That's what I'm currently taking while I learn about more supplements to replace or add to the regimen.
Fourth, do...what...you...can... You may have to suck it up a little bit. None of us wants to go through this hell, but I can tell you that through my recovery, certain symptoms resolve and others intensify. In my case, as my Babesia symptoms are cleaing, my Bartonella is flaring harder than ever.
This is part of the process. If you read the book in my first suggestion, it might help you mentally prepare for this -- like it has done for me.
Commit to yourself to resolve this and go through the struggle. I have days when I feel alone in this, but I realize it's the Bartonella symptoms giving me anxiety and mood swings. It's not me, it's the Bartonella. Good thing is Bartonella usually responds quick to treatment (from what I've researched), so once my regimen to attack Babesia hard is in place, we will hit Bart.
Until then, I'm sucking up the discomfort until I reach that point.
posted
I am having serious brain problems, i used to be a pretty smart girl. atm i am struggeling to read your post. I will try to read that book.
I dont drink, i dont eat crap. Lets put it this way, even though i didnt know i had lyme i got sick at age17. I have been in an underprivldged place my whole life, but stayed strong. I tryed to heal my self since i got sick, So i changed my diet. I eat comfort food once in awhile now.. But thats becasue im not in a postion in life to be very disclipned not to... You just know when you can handle things at the moment i cant handle much. I am living in a room with no furntiure. I am all alone, and ive lived off my savings and am on 0 now, living off a ssdi check every month. Lets face it you cant eat that healthy with 200 dollars to live on a month. I do eat fruit, veggies, sprouted bread, spring water, and some treats- which takes all my money.
I dont really believe in taking vitamens, as i did for years, everything under the sun, and really i got no where fast.... my body cant handle them that well these days almost seems toxic..... I do take a cal mag vitamen d liquid as i think it does more benefit than harm. I do take fish oil. And Royal macca for the severe mentsrul problmes i have- which is like 2 weeks of living hell.
The most unhealthy thing in my life, is the emotions that come with feeling defeated and struggeling for survial and not being able to work on conquering my illness or even to begin to heal so i can do what i truely want in my life - music, and to travel, and hopefully meet my soul mate so im not so lonely anymore.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
If i just knew that what i was doing was leading me to a better place i might feel better, but atm i am not tolerating the protocal that this doc and a previous doc prescribed me.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
What you can't see from the inside looking out is that the infection is what is making you doubt yourself. And I understand, because it's hard to feel positive when it's been so long since you've felt truly well.
The supplements never made you sick, sweetheart. It's the infection not LIKING the supplements that did the trick. I've had problems with supplements in the past...and antibiotics like Bactrim DS. But that is one of the drugs I plan on putting in my regimen, and going through the pain tunnel with.
It's not YOU that can't handle it, it's Lyme's reaction to it. Unfortunately, you are a passage for Lyme's pain as well.
I too have been sick on and off from Lyme since I was 17. That was almost 10 years ago. The more research I do, the more I realize how long I've been harboring this thing.
I'm glad I found this place. There are stories of persistence and healing all over this forum from others who have suffered far longer than I or you. Everyday you postpone dedicating yourself to treatment is another day the infection digs deeper in the both of us.
I know you're in a difficult place right now. Take some time to resolve it. Cry if you need to. It will pass as just another moment in time, and tomorrow is another day to find peace in this mess.
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
posted
Well its good i read this reply, but i get too overwhlemed when i read too much on this board.
Dedicated how? How can i be dedicated when i dont know which road i should be taking to cure it? Im dedicated to trying what i am at the moment, but it doesnt seem to be bearing any fruit nor have i have any idea its actually doing any good. I was on antibiotics for about 4 months.....Tell my stomach just couldnt take it anymore. Just now has the extreme shooting pain in the middle of the night subsided and being regular returned, and that took 2-3 months. I had suffered ibs symptoms years ago for years and had healed it. after not having problems for years besides when stressed only 4 months of antibiotics had made it all come back..And thats with the fiber and pro biotics..
There are a million ways to treat, and multiple different theorys on what works and what doesnt. I just need some kind of regime, that i can tolerate as i dont have any help in life and need to function somewhat- im bearly making it as it is...... but i havent got a guide ( doctor) to help me though the labyrinth and find that regime yet. I just waited 4 months to see this last doctor and look what he gave me, one option that i am struggling to work with even slightly, and it was a protocal i had tried months ago that i couldnt tolerate...
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
There's a reason the doctor has a 4-month waiting period. It's because people are beating down the door to get under his care.
If I was in your shoes, I would try his plan. I have nothing to lose by seeing how well it works. I would give it 3-4 weeks, and make a judgement call at that point.
If there's one thing I've learned in life, it's to trust your own judgement. You, and only you know what you can handle for treatment. But, that comes with a disclaimer because you have to be willing to accept the road ahead.
I'm in pain right now. I'm suffering a flare from Bart, I have rashes on my fingers, hands and face. I've had a headache all night, heart palpitations, and random pain along my triceps. I thought at one point I was having a heart attack, because the pain was near my chest cavity and it was intense.
My point is, do I think I need to quit my treatment? No...
My vision is better than ever, and my joint pain is greatly reduced, as well as the redness around my knuckles; my chronic sinusitis is not flaring, and I'm walking around barefoot when I needed ORTHODICS just 4 weeks ago!
It's a PAIN TRADE-OFF.
I used to associate all my symptoms with supplements and medications... Now, I see the majority of it is Lyme & Co. fighting back.
Again, trust your judgement and your body first. Just know that the road to recovery can be pretty bumpy.
I'm taking the slow-route by my docs recommendations. I started with lifestyle changes, then diet changes, then supplements, then herbs, and THEN ABX.
It's been almost 3 months, and I'm pleased with my progress thus far.
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
posted
Just realized I kept writing him and his. Just associating words with my doc. If it's a lady, my apologies. Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
posted
So take the combo of drugs so im mentally in outer space and crying all day cause im so ****ed up unable to have interaction with others and my stomach gets screwed up? I mean it feel like i was put on ketamine and heroin at the same time, and i mean thats how i feel now except when i take the whole doses it gets worse, WAY worse.
I mean it effects me to the point that i cant function and i have to, i mean there is NO ONE who is gonna take care of me while i get like that, and in my opinion its not safe for me to be in that state.
Seems like your doc took a lot more consideration to your case, this doc just gave me this script, without any other recommendations nor considering what i told him about my history.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
Might i mention, that these mental problems ( ie dissocaiton/ feeling like im on heavy drugs ) didnt start tell after i had to stop the abx 3 months ago............
And this is all pain aside. which i have learned to have to deal with, its the brain function that scares me the most.
;?
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
Its a guy doctor. Who also told me when i asked him what i should do to contact him if it didnt work " you wont be able to, you can try to fax me."
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
I didn't mean to upset you or aggravate the situation. In reality, I'm only as experienced in dealing with this as you are.
I did my research, went between 3 different doctors before picking one I felt comfortable starting a program with. Even right now, I'm not sure if I'm on the best regimen or not -- and only time will tell.
There are other options. I also picked up Healing Lyme by Stephen Bruhner from my local library and am hoping to learn about alternatives to accelerate my recovery speed.
At the end of the day, I'm not even following a doctor's specific protocol per-say. I'd like to think I'm mixing a bit of the best ideas from all of them, and rolling them into my own little joint.
I'm testing new supplements and products weekly, and rolling with what works for me. That's the only way I now to beat this thing. And like you said, reading all of this can be overwhelming...
So....
At some point you have to suck it up and give it a shot, no?
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
Like you i am using my own research, i mean LOL im using grapefruit seed extract instead of biaxon (to save my stomach) and drinking apple cider vinegar, in hopes that bringing the acidity down the extract can attack the lyme better, but its all a crap shoot. Mean while im using the plaq every other day tell i can build up tolerance in hopes that eventually i can take what he prescribed,,,, since i have nothing else atm.
Much love for talking to me. x
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
Sorry, hun. They don't take insurance. It seems like none of the well respected doctors do. Unfortunately, I don't blame them. They need freedom to help people, not bull**** from insurance companies about treatments.
Also, I have some MAJOR mold issues. Turns out I cannot tolerate mold-type foods. E.G. Cheese, Tomato Sauce, Mushrooms, VINEGAR and all vinegar products.
So, I'm just curious if you've looked into any allergies or things you are eating that could be upsetting your stomach. That was a huge discovery for me to learn about Food Allergies and Food Intolerances.
It's almost like Lyme disease. My allergist didn't take it serious at all. He told me, "it's not a real allergy unless you have an immediate reaction to it. But, some people have intolerances that can take several days to produce reactions."
That means, you can drink a cup of milk and not feel sick from it for 2 days. Then you associate all your problems with what happened that specific day, you feel me?
That's why I went on such a strict diet. I did it because of my sinus problems, and had researched on Google about a specific diet to help with nasal polyps. Turns out these mold-type foods were reeking HAVOC inside me.
If you haven't explored this yet, I would look into it immediately.
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
posted
Thx, Wolf, for chiming in here. I'm interested in this conversation too.
My question is: how can an LLMD ask someone to tolerate drugs without any advice about how to handle the side effects, when Camber already knows she can't handle the side effects of the recommended drugs?
A doctor is needed who either knows what to do re drug side effects or works with the patient to find what they can handle.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
It is very possible that the Biaxen stirred up a yeast problem. (even if it is not the obvious kind) and that is why you are having such serious brain fog, so to say.
Biaxen is one of the worst drugs for yeast.
My nutritionist says that Grapefruit Seed Extract messses up the detox pathways for the liver and should NOT be taken while on antibiotics, especially Biaxen. It's okay when off the abx though.
Do you have any symptoms of yeast besides the brain fog and stomach issues?
There are lots and lots of posts here about this, do some reading. You may be surprised to find that you can get relief by eliminating the yeast.
Good luck!
Posts: 114 | From Atlanta, GA | Registered: May 2009
| IP: Logged |
posted
No yeast problems besides , i dont think this is a brain fog. This IS SOMETHING OF ANOTHER WORLD LITERALLY!!! I Feel like im losing my brain. TOTAL dissociation. Im ****ing scared, and when ive been taking the biaxon with the plaquenal for two days now im severely depressed. I cant stop crying, my situation looks hopeless right now.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
Hey bncramp plaqunel isnt a abx is it? do you think you could ask your nutristionest if it is bad to take with plaqunel?
What if i tried olive leaf extract with grapefruit extract? Is this a safe option?
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Camber said... "He says taking small amounts of anything is just gonna aggravate your symptoms, and not cure anything."
If he said that he is wrong. Wrong, wrong, wrong.
There are a number of Lyme (and other) patients with genetics problems that are finally being discovered and documented.
They can not clear the toxins like normal people can. They can NOT do the heavy doses like other people seem to be able to do.
And NO ONE should have to be stinking suffering sick while trying to address Lyme. Period.
Herxing can and does KILL people. It's in the literature and needs to be carefully considered before anyone says "suck it up" and suffer through this nightmare.
Those who don't have the genetic problem will never understand what it feels like to herx like those who have it herx.
I am not a doctor and can't tell you what to do... but if it were me...
And I had Lyme that long untreated.. I would stop everything and talk to my doctor again and get this straight. Then proceed SLOWLY.
And to note- Does your doctor know you are using grapefruit and other supplements?
If not.. you are not being fair to him or to yourself... and your money is being wasted because no one can help you if you just go and do what is not being prescribed.... and change the protocol on your own.
I do hope you feel better soon. And DO listen to your body. If it is not happy, it will let you know by causing you problems.
posted
Thx for addressing the issue of small vs large amounts of treatment, TC.
There is a difference between those who can take large amounts of meds and those who simply cannot. I almost feel like this issue deserves a thread of its own.
I hear too often that people are supposed to take a lot of med to keep the organisms from becoming hardier.
Well, whether that theory is true or not, a lot of people cannot do large doses of anything.
So there has to be other ways to treat besides causing major bigtime herxing.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I am sorry things are so rough.
Biaxin is an excellent abx and your LLMd is correct in saying the doses he prescribes is what you should be taking to get well. Lyme is a very virulent bacteria.
But, I also think if you have a very hard time you can ramp up to the dose - that can make it a little easier. Biaxin nearly drove me nuts, but it worked well (I did 1000mg per day) and I seriously had to just do it, it wasn't easy but it does help in the long run. Good days started appearing eventually.
The thing I am wondering is why he doesn't have you on another abx with it like Amoxicillin, this way you'd be covering all forms of LD.
Not having a place to sleep through all this is very hard, sleep is so necessary. So at this point you really have to do what is easiest for you to function until you have a place that is quiet and you can rest. I hope you find a place that is peaceful.
posted
Ok I took the biaxon and the plaq for two days togather. ( mind you i WAS tolerating the biaxon on its own 4 months ago prior to trying diff abxs and stopping for a month and a half due to HUGE stomach problems)
I have been taking plaq for almost a week trying to tolerate it. I have realized on or off it- I am like a girl walking around dissociated on another planet on drugs in la la land. I have lost all focus and basically am feeling my brain melt. So no difference now with the plaq- that i can tell...
I have been taking grapefruti seed extract. 3 drops a day for 3 weeks, which hasnt gotten me feeling any diff then before talking it.
I added the biaxon for 2 days, with plaq>>>And that brought on unbearable heavy depression and crying fits all day.
I stopped the biaxon today.. Still had severe confusion and depression- crying all day.
Now i know to all of you, thats a normal thing to go through once in awhile, but for me to add that to whats allready going on with my brain and life circumstances its just not feasible. I cant make it through any more days with crying spells that long. ITs so strange its like im taking drugs that mess with your head, but there ABX!!!! Its so confusing. I handled these months ago. ANd didnt hadle the plaq with them tho..........
I dont know whats causing what but i think i see a def direct connection with the heavy depression and confusion and adding the biaxon. Which is odd as i handled it on its own for months previously. ( had stopped it as i wasnt getting better and we wanted to try diff abx to see if something would help more)
Ok updated.
Im taking it second by second. my back is tingling and burning and my eyes are glazed over all day long- today its from tears. I repeat this thing thats been happening to my brain is way diff than a fog or any other herx type thing i have ever gone through. ITs now been 4 months. and i cant ask my doctor as i DONT have one, and for me to go to a reuglar hospital i would risk recieveing trauma and wasted energy on their way of dealing with things. THIS happened after i stopped the abx in Dec due to SEVERE stomach problems. Which i finally got under control.
Am i gonna loose my brain though this? = ( How do you know your near dying with lyme?
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
But, I also think if you have a very hard time you can ramp up to the dose - that can make it a little easier. Biaxin nearly drove me nuts, but it worked well (I did 1000mg per day) and I seriously had to just do it, it wasn't easy but it does help in the long run. Good days started appearing eventually.
The thing I am wondering is why he doesn't have you on another abx with it like Amoxicillin, this way you'd be covering all forms of LD.
HOW did it make you nuts? :waves:
What do you mean all forms? Why didnt you go on Amoxicillin. Could you explain what you mean for me? I have a nice gp who is willing to give me any abx i ask for on the other hand, soooo....
And to anwser you This doc llmd i saw ( who i waited3 months to), wouldnt go outside his cookie cutter formula if you paid him.... Or maybe he would.....hmmmm. No i think he enjoys playing god and knowing the answers.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
And I had Lyme that long untreated.. I would stop everything and talk to my doctor again and get this straight. Then proceed SLOWLY.
And to note- Does your doctor know you are using grapefruit and other supplements?
If not.. you are not being fair to him or to yourself... and your money is being wasted because no one can help you if you just go and do what is not being prescribed.... and change the protocol on your own.
[/QB]
Thanks. I did stop everything for a month and half, I went to my gp, he knows im doing the GSE slowly. i am slowly trying the plaq as reccomended by this llmd i saw once. I am slowly trying the biaxon which was not going well.
I cant get much straight with my gp as he is confused as i am. BUt agrees with the GSE and me trying the plaq every other day.. but now im up to every day for 5 days.
Still no difference than when i wasnt on anything, except when i add the biaxon, on its own got severe anxiety. With the plaq get severely depressed.
I know i sound crazy saying all this, but im watching very carefully. Where im at allready i cant handle severe anything, tho and its not in my head... IT really feels chemical.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
Up - others have experience with these treatments?
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Maybe you should drop the Biaxin and Plaquenil combo for now. Let your stomach heal.
Is your GP willing to prescribe Bicillin LA shots? If you have medicaid or any insurance they might be willing to cover the shots with no copay if they are administered at your doctor's office.
This might be worth a try because Bicillin LA is long acting. You could take 2 to 3 shots per week and give your stomach a rest.
Once your stomach is healed you can ask your GP for a cyst buster (Plaquenil, Tindamax, or Flagyl). Most people pulse the Tindamax or Flagyl, taking them only a couple days per week so maybe one of these will be easier for you.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
If the anxiety or depression sticks with you when you stop the Biaxin, Plaquenil, and GSE you might want to talk with your GP.
Being sick and having to deal with the every day stresses of life can sometimes be overwhelming. Lyme, coinfections, toxins, all these things can cause the chemicals in your brain to be unbalanced. If you are struggling you might want to consider trying an antidepressant.
There is no shame in asking for help. You will only help yourself. You may only need the medication for a few months. Once you get your symptoms under control and treatment under way life may be easier, more tolerable. Treat the infections and take your life back.
All of these things are just suggestions. I see that you are suffering and it breaks my heart. I hope that you are able to find a way to get the help that you need to make it through this difficult time. Don't give up Camber.
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Low dose tx is NOT BS. I was severe neuro with undiagnosed Lyme for at least 22 years and my LLMD started me on mono therapy, low dose. Worked my way up on dose but still on mono therapy 2 years later and I'm FUNCTIONAL now!
My LLMD believes that if you have a high bacterial load with chronic Lyme, that starting out with more than you can handle is dangerous.
Yes, you may have to tough it out with the stomach issues. You have to get your GI healed or you just can't take certain abx. But I'm proof that low dose, mono therapy CAN work. It doesn't work for everyone. But it's not BS. I felt like I was dying two years ago with every symptom in the book.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
posted
My 2 cents, Your issues were/are: clarithromycin/biaxin was probably helping but your stomach symptoms caused you to have to stop taking it.
Your were off biaxin four months and during that time your neuro/psych symptoms got worse or recurred. I am guessing these brain symptoms started not long after you stopped the biaxin, if so the Bart or B.L.O. was a likely cause.
So your LLMD wanted you on biaxin + plaquenil but again your stomach is still an issue and it would appear from the very quick worsening of your brain symptoms that you may be having a known side effect of quinolones which is brain toxicity. If so that will also occur if you try taking cipro instead of the plaquenil.
A better option for bartonella that would avoid quinolones entirely might be adding Bactrim to something else say zithro. Now of course zithro could also upset your stomach and you may need some acid reducer meds for that but either biaxin + bactrim (or rifampin but bactrim seems better tolerated by most folks) or zithro plus bactrim should get good attack against Bart, and decent brain/cns penetration for Borrelia and avoid the chloroquine/quinolone class of meds altogether.
If all goes well with that then adding cyst buster like flagyl can be added very cautiously at a later date.
Hope you find peace soon.
Beachinit
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
| IP: Logged |
Did you say you were taking grapefruit seed extract and Apple Cider Vinegar? On a bad Stomach? OUCH !! Your stomach is acid, Citrus anytingy is more acid and Vinegar is acid. Add ABXs and Supliments and you got a witches brew. Honey, try a Tums!
Are you eating good?
-------------------- JJG Posts: 33 | From Scranton, PA | Registered: Sep 2009
| IP: Logged |
posted
Ok-I know what you're going through with the depersonalization/derealization.
Unfortunately it can be caused by just about anything medically or mentally stressful on the body and is often a symptom of your brain trying to focus on keeping your vitals working properly so it basically dims parts of the brain that aren't vital-such as being fully alert and connected with your surroundings.
The problem with this is once you experience it, it is really incredibly scary, kind of like a bad drug trip, and it causes stress and anxiety which further cements the brain in the dissociative state.
In your situation this is hard to overcome especially since you are depressed, sick, terrible stomach problems, scared, and have no actual personal support. I know this sounds kind of lame considering the severity of these mental symptoms, but one recommendation is to see a very good Lyme Literate therapist or psych doc or even any therapist or psych doc that can work with you on the mental stuff. I'm not sure if this is possible for you due to your financial state. If its not, try looking into some books that deal with forcing yourself into a relaxation response and dealing with derealization/depersonalization.
An Amazon search should come up with a few. I know its hard to think straight right now, but even reading about it and what goes along with it helped calm me down a lot and gain at least some control over it. Even if you just read some things on the internet about it.
I am in the middle of my Biaxin/Plaq treatment and yes it messed up my stomach but it is working very well for the rest of my symptoms and everyone is different unfortunately. Its a very powerful combo.
Posts: 594 | From NJ/NY | Registered: Jun 2006
| IP: Logged |
BTW its not the biaxon that messed up my stomach, it was switching around on abx and then trying zitro... My stomach has finally healed like i said earier, but it took 2-3 months not on abx.
I Am confused as that severe heaviness happens when i try the bixon with the plaq like elley seems to know what im talking about. Its so chemical its unreal. But when i was taking bixon months ago i tolerated it fine. Infact i didnt even get ****ed up on it after 2 weeks. I was taking it on its own mind you. ( i switched off it as i wasnt impoving alot, but in retro spect i was doing 50 times better than i am now)
I am not going to take antidepressants as i have never handeled or tolearated them well in the past, and what s the point untill i stablaize on a lyme treatment. as everything effects everything.
I gave the biaxon w plaq anohter attempt yesterday and upped it like someone mentioned on here. (didnt take the gse) I didnt have the severe severe deperssion, but got severely tired and feeling like i was put on a high dose of heroin again, with a head ache that could kill you. I am def getting some kind of toxic effect in my brain. Im not sure if i shuld keep trying it or do a day on and one off. i feel like im hungover from drinking all night.
Do you guys take fiber before you take your biaxon? or NO? what do you suggest again pulsing?
like should i take the abx every other day or the plaq.. I dont know what pulse is too much, wolf tryed to explain to me but..........
and the apple cider vinger has not messed up my stomach... It works miracles on your ph!!!
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
upddated. I attempted the biaxon again as i really need to change my circumstances and well i keep tring, treid just the bixon itself today. Seems im so sick lately i cant handle it though which is soooo odd as i handeled it fine before i got in this mental place 4 months ago after i stopped all abx. Today I basically got migraine and front head pressure to a point where i seriously cant take along with complete unability to focus leading to severe anxiety attacks as the pain in the head is enough to cause this. These headaches happened yesterday when i took the increased dose, but i had taken the plaq with it and it seemed to be easier than today was, but maybe thats because i wasnt so alone yesterday. I do think its note worthy that when i went to sleep i felt like i had overdosed on drugs, and when i woke in the middle of the night with nightmares i felt to sick to ever get up to shake the vivid dreams 40 mins into sleep. I seriously feel like im being poisoned.
I just keep trying to tolearte this medicine- biaxon, as i was doing so bad on nothing -and i had tolerated it in the past. Yet now biaxon seems everytime i have tried it since stopping abx in the pst month it has an adverse reaction to my mental state, creating anxiety that is too much to navigate when i take on its own . Now that ive been on the plaq my reaction to it is differnt, severe headaches and increased depression, and today again on its own resulted in a massive panic attack as i am so unable to focus on anything and the headache is so intense my mind starts to panic and go unwanted places due to the discomfort.
Either way i know that im prob writing too much, but i guess what im trying to say is through my testing of this drug in the pst few month i can see a direct coralation between it and my panic attacks. And def severe migrane frontal pressure.
Questions= do you guys who do this protocal take the two drugs at the same time of the day?
do you alternate the drugs?
Do they both need to be taken togather to be effective?
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
quote:Originally posted by Beachinit: My 2 cents, Your issues were/are: clarithromycin/biaxin was probably helping but your stomach symptoms caused you to have to stop taking it.
I was only on biaxon. It did start to help me. There came a time where i felt i was noticing no change, i didnt feel "high" on it so felt it wasnt working as i associated this high as a herx. ( mind you the high was nothing like what im having to go through which is that high times 10) I also noticed i wasnt able to sleep as well as i was before on the doxi and when i first started the biaxon, so my gp and i decided to give some other abx a shot.... The process of trying diff abxs is what screwed my stomach, zithro i think was the major culprit. By the time my stomach pain was so severe that even stopping abx didnt stop the issues, i had to wait weeks to try biaxon again and when i did my stomach couldnt handle it. Which inturn i stopped for months and started to loose my brain function and focus to the point of dissociation with everything almost.
Just recently have i started the plaq....since i went to the long awaited "lyme literate" doc appointement.... being a good sport and wanting to find something to help i have attempted the plaq for every day or every other for a few weeks now. I know the first few days sucked on it, but it has not made a considerable difference in how i was feeling prior....Im still just as "out of it" "on planet z" ITs only when i add the biaxon that things get out of hand. Hence why i experminted with gse as a replacement to it for a few weeks. I would like to mention again that losing my brain is something that makes things out of control and for me to say that its gotta be ruff as ive been thru hell and back and to complain like this its serious. I know what brain fog is and being spaced and this extreme is a whole other story. Adding to this statel with biaxon...makes things go sideways, i just doubt is the way forward but if someone would tell me its safe and is the way forward i will continue this hell and bite by lip. I just dont know if its safe.... I feel MORE poisoned.
quote:Originally posted by Beachinit:
Your were off biaxin four months and during that time your neuro/psych symptoms got worse or recurred. I am guessing these brain symptoms started not long after you stopped the biaxin, if so the Bart or B.L.O. was a likely cause.
Ok yes thanks for listening to me so well, it means alot... I am very unaware of what bart and blo are... Im glad this makes sense to someone.
quote:Originally posted by Beachinit:
So your LLMD wanted you on biaxin + plaquenil but again your stomach is still an issue and it would appear from the very quick worsening of your brain symptoms that you may be having a known side effect of quinolones which is brain toxicity. If so that will also occur if you try taking cipro instead of the plaquenil.
A better option for bartonella that would avoid quinolones entirely might be adding Bactrim to something else say zithro. Now of course zithro could also upset your stomach and you may need some acid reducer meds for that but either biaxin + bactrim (or rifampin but bactrim seems better tolerated by most folks) or zithro plus bactrim should get good attack against Bart, and decent brain/cns penetration for Borrelia and avoid the chloroquine/quinolone class of meds altogether.
If all goes well with that then adding cyst buster like flagyl can be added very cautiously at a later date.
Ok right here my brain is having a hard time understanding. You are giving me an alternate to my situaiton. Thank you thank you. I am confused a bit by all the names, but i know i DEF cant take zitro.... I will right away ask my gp... as my "llmd" is unreachable and unopen to alternate treatement.. Ill ask my gp for the bactrim.. Now i can try it with the biaxon, i just hope i dont have the problems im having with the biaxon since the neuro problmes got out of control....Like i said i tolearted it before. SO your saying this bitran might make things more undercontrol and i might acutally be able to handle the biaxon agian..= )
THANK YOU THANK YOU for hearing me and offering me an idea that might be an option to discuss with my gp!!!
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
quote:Originally posted by elley0531: Ok-I know what you're going through with the depersonalization/derealization.
Unfortunately it can be caused by just about anything medically or mentally stressful on the body and is often a symptom of your brain trying to focus on keeping your vitals working properly so it basically dims parts of the brain that aren't vital-such as being fully alert and connected with your surroundings.
The problem with this is once you experience it, it is really incredibly scary, kind of like a bad drug trip, and it causes stress and anxiety which further cements the brain in the dissociative state.
In your situation this is hard to overcome especially since you are depressed, sick, terrible stomach problems, scared, and have no actual personal support. I know this sounds kind of lame considering the severity of these mental symptoms, but one recommendation is to see a very good Lyme Literate therapist or psych doc or even any therapist or psych doc that can work with you on the mental stuff. I'm not sure if this is possible for you due to your financial state. If its not, try looking into some books that deal with forcing yourself into a relaxation response and dealing with derealization/depersonalization.
An Amazon search should come up with a few. I know its hard to think straight right now, but even reading about it and what goes along with it helped calm me down a lot and gain at least some control over it. Even if you just read some things on the internet about it.
I am in the middle of my Biaxin/Plaq treatment and yes it messed up my stomach but it is working very well for the rest of my symptoms and everyone is different unfortunately. Its a very powerful combo.
Thank you too for hearing me and explaining a bit more to me what is happening. Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
posted
Camber, you may be doing some detox already but if not, it would help. I didn't take this seriously for a long time after I started treatment and that was a big mistake.
I feel for you as I know what you are going through. The brain stuff is the scariest. I truly hope you can find something that works and that you can tolerate. Hang in there, it does get better.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
| IP: Logged |
So your LLMD wanted you on biaxin + plaquenil but again your stomach is still an issue and it would appear from the very quick worsening of your brain symptoms that you may be having a known side effect of quinolones which is brain toxicity. If so that will also occur if you try taking cipro instead of the plaquenil.
A better option for bartonella that would avoid quinolones entirely might be adding Bactrim to something else say zithro. Now of course zithro could also upset your stomach and you may need some acid reducer meds for that but either biaxin + bactrim (or rifampin but bactrim seems better tolerated by most folks) or zithro plus bactrim should get good attack against Bart, and decent brain/cns penetration for Borrelia and avoid the chloroquine/quinolone class of meds altogether.
If all goes well with that then adding cyst buster like flagyl can be added very cautiously at a later date.
what is bactrim and what is it for? Im handeling the Plaq every day.. I think.. well nothing has gotten way worse than before i started it. How come i only get the brain toxicity when i add the biaxon to it? i mean its confusing. I still most days have the dissociation issues with the exceptions of when my whole body goes into auto pilot anxiety mode , if i dont sleep.
Im taking GSE
Is the plaq alone not enough to tackle the bartonella?
whats another abx i could add as biaxon acting back with me and i think i tried zitro allready.
My pain is worse than ever now.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
quote:Originally posted by sammy: Maybe you should drop the Biaxin and Plaquenil combo for now. Let your stomach heal.
Is your GP willing to prescribe Bicillin LA shots? If you have medicaid or any insurance they might be willing to cover the shots with no copay if they are administered at your doctor's office.
This might be worth a try because Bicillin LA is long acting. You could take 2 to 3 shots per week and give your stomach a rest.
Once your stomach is healed you can ask your GP for a cyst buster (Plaquenil, Tindamax, or Flagyl). Most people pulse the Tindamax or Flagyl, taking them only a couple days per week so maybe one of these will be easier for you.
What are bicillin shots? What do they treat?
If im handleing the plaq every day should i try to do every 3 days instead. i mean the pain is intolerable, and my mental issues have gotten out of hand and im not sleeping but i cant say its def casued by the plaq. It could be life circumstances.
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
quote:Originally posted by Beachinit: Your were off biaxin four months and during that time your neuro/psych symptoms got worse or recurred. I am guessing these brain symptoms started not long after you stopped the biaxin, if so the Bart or B.L.O. was a likely cause.
So your LLMD wanted you on biaxin + plaquenil but again your stomach is still an issue and it would appear from the very quick worsening of your brain symptoms that you may be having a known side effect of quinolones which is brain toxicity. If so that will also occur if you try taking cipro instead of the plaquenil.
A better option for bartonella that would avoid quinolones entirely might be adding Bactrim to something else say zithro. Now of course zithro could also upset your stomach and you may need some acid reducer meds for that but either biaxin + bactrim (or rifampin but bactrim seems better tolerated by most folks) or zithro plus bactrim should get good attack against Bart, and decent brain/cns penetration for Borrelia and avoid the chloroquine/quinolone class of meds altogether.
If all goes well with that then adding cyst buster like flagyl can be added very cautiously at a later date.
Hope you find peace soon.
Beachinit
might i mention the toxicity of my brain has not gotten worse from the plaq, well not noticely worse, only some. but got extreme when i added biaxon to it. So is this in the family of quinolones? I dont know...
what kind of drug is Plaq... Is it doing any good on its own? I mean i am taking gse with it as a subsutition for biaxon tell i can try what you metioned.
'why do i want to avoid the quinolones? Maybe thats not it as i mentioned it only got more severe when i tried the both. I am allready feeling like my brain was frying before i started either, and before i started the gse.
I do have to mention i do get high off it... just that its tolerable and not too bad of a differnce. I just dont know if its doing any good....
Posts: 92 | From ri | Registered: Aug 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
![[Frown]](frown.gif)
![[shake]](graemlins/shake.gif)
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
![[Mad]](mad.gif)
![[sleepy]](graemlins/sleepy.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic