Lyme Disease Treatment

Ok, so I am getting inpatient. I have Bartonella, Mycoplasma, Ehrilichia, and probably Lyme. I am one of those unlucky very sick, mulitple co-infected indivduals. I got ill in July of 2007 and saw multiple doctors and experimented with different treatments. Some things helped short-term, but nothing consistent. Most recently I have been on antibiotics.  I have been taking them for about 3 months now. My doctor believes in starting out on low doses so I take Minocycline 100mg and Azithromycin 600 mg once a day, alternating days.  I also take a range of vitamins and supplements. So far I notice no difference. No herxing, no better, nothing. My question is for those of you who take antibiotics, how long did it take you to notice a difference? Also, was there anything that particularly helped you that you can share?  I am just trying to get an idea. I know that there are many factors that determine response to treatment. I am just starting to feel discouraged again. I see my doctor tomorrow and I assume she will increase my antibiotics and possible add another since I am tolerating what I am prescribed now.  I guess I just need to hear that there is a light at the end of this dark tunnel. Thanks!

[JackieCalifornia]

You are entitled to be impatient!  Being sick is the pits, but you know that already.

Everyone is different in how they react to meds, depending on your immune system, your metabolism maybe, and definitely on what coinfections you have.

My LLMD was a believer is lotsa abx right off the bat, at least for me.  I never felt any worse on them than I did without them, and I slowly slowly got better.  I haven't done any reading on the low-and-slow approach your doc is taking, but others here might have some insight.

Given my ignorance of that approach, this may be a useless (or worse, harmful) suggestion, but what about telling the doc you want to speed things along and get moving with treatment, and you're willing to suffer some side effects if that's the concern.  Maybe that's NOT the concern, but it opens the conversation.  

If your doc doesn't have you on probiotics, you might ask about those.  When the abx get through killing off the friendly bacteria in your gut, it can cause problems ... been there, done that, not doing that again.

Sorry not to have a whizbang suggestion for you .... let us know what the doc says, ok?

[ree427]

Oops, meant to say "getting impatient"...I guess I have brain fog when it comes to spelling these days!

[ree427]

Thanks, Jackie.  I wish things would speed up a bit, so I'll make the suggestion to my doctor. I wanted to really hit it hard with the IV abx, but my insurance will not pay for this and it's an awful amount of money. She does have me on a TON of probiotics, so that's a good thing. It's definitely more challenging with all the co-infections and my immune system is in terrible condition. She's keeping a check on my CD57 which actually got lower since I began treatment...this was discouraging. She has me on a supplement to try to improve my immune system.
Thanks again!

[JackieCalifornia]

From what I read (and I'm not medically trained, mind you!), IV is not as important an approach as it used to be.  Oral abx seem to be just as effective, from what I've read. They also have less risk of site infection from the IV, are cheaper and more convenient.

I think I've read in a few places that CD57 isn't as directly correlated to infection and treatment as once thought.  You might do a little reading online, esp if you can find some medline article abstracts.   Just a thought ... If I run across anything, I'll send it to you.

[ree427]

Good to know both of those things. So far, my insurance is covering the oral antibiotics. I would be interested to read those articles. I always like to bring information to my doctor to read also.

[wonko]

I started out on a very similar treatment plan.  My primary issues are Lyme and Bart, and my LLMD does not believe in super high doses of abx, nor does he necessarily use IV abx, even when neuro involvement is apparent.  I started on mino/zith in a pulse regimen, and stuck to that for a couple of months.  I didn't feel a whole lot different during that time, but I felt that my symptoms were stirred up a bit.  That was a change, because before treatment I felt equally horrible every day.  Once I was on abx, I started to feel some oscillations in symptom severity.

Next, I started a third abx, Bactrim.  That's when I started experiencing more severe Herx reactions, to the point where I was unable to continue treatment and my LLMD had me stop.  It took about a month to "recover" from that, and next I was put on Plaquenil.  That too caused me to Herx very badly, to the point where even after I stopped abx it took about a month to get over it.

The first 9 months of my treatment was much the same, using combinations of oral antibiotics at fairly low doses, Herxing, pausing treatment to recover from Herxing, and then repeating the process.  I was technically working part time through all of this, but my productivity was awful and it was not unusual for me to miss a week of work at a time.  I was often bed/house bound, unable to even rest in comfort.  I was in constant discomfort and had terrible "brain fog," to the point where I could not do things like recite my phone number or know off the top of my head.  I couldn't read books at all because I would instantly forget what I had just read, couldn't watch movies because the light/sound was overwhelming, and so on.  It was awful to be stuck in bed and not even be able to relax with a hobby or distraction.  Plus, I had so many paresthesias and muscle/joint pain that I was never that comfortable.  I slept in short shifts, and always woke up feeling exhausted.  But I was lucky that I was able to keep up with my bills and at least hold onto my career by a thread through this time.

Somewhere around the nine month mark of treatment I started to feel less constantly overwhelmed by symptoms and got back some stamina.  I was able to intermittently enjoy days when I felt well enough to do more things, which was great for my emotional health.  But I would still experience a lot of "payback" for "over-doing it" and had to be careful.

Around the 1 year mark of treatment I resumed full time work.  That was probably a bit premature, as shortly afterwards I started tindimax which sent me into a serious flare/Herx.  I was also on the job market at this time and traveling for interviews, so it was pretty stressful.  But I had faith that I could get through it since I had already seen myself go through worse.  Sure enough, I bounced back from the Tindimax and continued making my slow and steady progress.

At about the 1.5 year mark of treatment I was in the middle of relocating for my new job.  I stopped abx at this time, thinking that maybe I would be ok and that my lingering symptoms would resolve on their own.  That was a mistake, and I found old symptoms returning and my health declining.  Worse yet, when I resumed abx, I experienced a serious Herx/flare such that I was terrified of not being able to do my new job.  I was literally going directly to bed as soon as I got home each day, and pushing through extreme exhaustion and discomfort each morning to return to the job.

It took me through the fall to get over the setback I experienced from trying to stop treatment too soon.  Early this year, past the 2 year mark, I again seemed to be making some gains, but then I started experiencing the worst afternoon fatigue ever since this whole mess began.  I would feel ok in the AM and be able to exercise and get to work, but I would "crash" and have to leave early most days, experiencing feelings of heaviness, brain fog, dizzy, blurred vision, muscle aches, etc.  Thankfully, my LLMD realized this severe exhaustion was out of place, and since he started me on cortisol and a gluten-free diet, my energy is WAY better!

This summer my LLMD has again changed my abx, and I'm again on tindimax.  It again made me Herx, but not as severely.  So I still don't think that I'm "done" treating, even though it has been over 2.5 years, but I'm really starting to have a much more normal existence.

Lately, I've been working 6-7 days a week, often for 10-12 hours per day!  I've traveled for work, been under stressful deadlines, and have dealt with last minute/unexpected stressors, all the sort of stuff that would have sent me into a serious health spiral in the past.  I'm not going to say that it's always easy, I do think I'm still dealing with a difficult symptom load, but I do see the light at the end of the tunnel.

Slow and steady seems to be working for me.  

Good luck!

[ree427]

Thanks so much for your reply. Your story gives me some hope.  I just have two questions...
What is a pulsed regimen and how long were you sick before you received treatment?

[Phtartist]

Thanks for being here girls.
Wonko, I have a huge respect for your strength and perseverance. I had to fold when it came to working, yet you have been able to maintain a career through what is obviously a long and arduous ordeal!
Ree, I often wonder if my doctor is doing right by me. I know I was diagnosed with Babesiosis, Mycoplasma and Lyme (which Lyme I'm not sure). He tested for Erlichia, Western Blot, etc. And said he is going more by symptoms that I have a third.
He has me on Clindamycin and a load of homeopathic treatments. IAG, Kapperest, Sytox, probiotics, and a regimen of vitamins. It is a great deal to deal with. He emphasizes I limit carbs. He told me to start Sam-e recently, 800 mg. Due to the looming depression and neurological difficulties I'm having. I questioned the high dose. He assured me it was fine. What he neglected to ask me is if I was ever diagnosed bi-polar. There are strict warnings on all writings about the product about people with this condition taking this product.
I have read that Lyme can cause bi-polar symptoms due to the affect on the brain but even the hint of a previous diagnosis should be a red flag with this product.  I became depressed about the time I became sick, consequently a doctor or two suspected, due to mood swings I may be bi-polar. This should have been considered before telling me to take this product. (GRIPE) lol
I was tested in March this year and started treatment 200 mg. Twice a day of the Clindamycin. The herxing was painful and unrelenting, so he now has me on 100mg twice a day.

[JackieCalifornia]

Consider that perhaps the bipolar symptoms were indeed a symptom of Lyme -- you say you 'became depressed about the time I became sick' -- and don't discount that possibility.  Lyme definitely has that effect in many of us.  Did you talk to the doc about your concern that Sam-e should not be prescribed to a depressive patient, and ask why you were given it?  It may not have been a mistake, but instead a considered judgment that depression that comes on at the time of a Lyme infection may be a result of the Lyme infection and perhaps not contraindicated.  Just a thought.  Not medically trained here.  I'm not familiar with the meds you are on except clindamycin.  

I'd suggest you read Dr Burrascano's 'Diagnostic Hints ..' posted at ILADS [dot] org,. under the tab About Lyme.  It's a good explanation of LLMD approaches, but at the same time, different docs take different approaches, because Lyme is still a developing area of practice.

[Phtartist]

Your train of thought is close to mine. I could call the dr. Who I only see once a month,  and ask about the Sam-e but decided myself,  to get started on only 200 mg.
The benefits of Sam-e are so great, I thought, let's see.
My doctor is an ILADS dr. Ironically. I will look at the site to check out the protocol they write of.
The IAG and Kapperest are herbal supplements. One for immune function and the other an anti-inflammatory. Sytox is a detox supplement, homeopathic. He said the Sytox wil lessen the herxing symptoms. :-/

[ree427]

I was on Sam-e years ago before I knew it was Lyme Disease. I couldn't take it because it made me more anxious. You do have to be careful with the higher doses because I believe it can build up in your system, but please don't quote me on this.
As far as the low dose antibiotics, I am fearful that the bacteria will have a chance to get resistant with the low doses and that is my main complaint. I guess I should just trust my doctor.
Thanks for the reply...

[JackieCalifornia]

Ree,

Interesting comment about Sam-e -- I have heard of it but never from anyone who took it.  I tend to be verrrry sensitive to all kinds of stuff, so I shy away from taking stuff that others have no problem with.  

Phtartist,

Calling the once-a-month sounds like a good idea ... since you're concerned, checking it out is very reasonable.  What sounds like a good idea in theory just isn't so in real life sometimes, and docs tend to sometimes throw a lot of things at patients, meaning well but then backing off if there's a bad reaction.  Me, I'd rather avoid the bad reaction.  Take care, follow your instincts!

[Phtartist]

Wise advice again. That is how I feel with this dr., like he is throwing things at me and....um let's see how it goes.
I feel like I'm dealing with enough, why add a reaction?
OH, I did tell him I do not react well to meds affecting my serotonin, such as ssri's and ultram since I had Serotonin Saturation syndrome. Sam-e does just that but he said to use it anyway and at that high dose 800mg.!
This dr. Is highly regarded, I researched him across many boards, so I have to trust.

[JackieCalifornia]

Ah, that extra factor about your (natural?) serotonin levels sounds important.  Sadly, we are our own best line of defense, no matter how much it seems the docs should be.  I think do look for us to push back when something isn't going right, but I would be lots happier if they said "This med may cause you to feel [_____], and if it does, then cut the dose back to X/discontinue it" ... but I think they don't do that because they are trained to just dose the lab rats ... er, I mean, the patients and wait for the telephone call reporting a reaction.  Not my preferred way, but they didn't ask me!  Take care --

[wonko]

ree -- You asked about pulsing.  That just means that if I'm on more than 1 abx at a time, I don't necessarily take both/all abx every day.  For example, when I started on mino/zith, I would take the mino MWF and the zith TRSat, and Sunday was my "day off" from abx.

Currently I'm on tindimax and factive, which my LLMD has me taking alternately on a weekly basis.

You also asked for how long I was sick.  That's actually not easy to answer, as I don't ever recall a tick bite nor did I have a classic presentation.  What I do know is that I got really bad (i.e., I "knew" that I was sick and that something was seriously wrong) in the spring of '07.  I was never well after that point, and that is also when I began to experience obviously neurological symptoms.  However, I had experienced problems off and on since around summer of '02, which is my "best guess" for when I was first infected.  I think my body was just able to fight the infection naturally for years, until it finally boiled over in '07.

However, in spring of '07 I was fairly young (27/28) and in the middle of finishing up my education and moving for a position, so even though that is when I started to know that something was wrong, I ignored it for some time thinking that it might resolve on its own or that it could be stress related, etc.  It was not until Dec. of '07 that I began to seek medical attention/advice for my situation.  By then, I was experiencing unrelenting tingling in my face, hands, and feet, and also feelings of unnatural heaviness in my limbs that made my walking labored.

I spent about a year going to doctors trying to figure out what was wrong, including 4 neurologists, a rheumatologist, 2 opthamologists, and dozens of trips to my primary care doctor.  Most of the time I was told it was in my head or that it was something unexplainable like fibromyalgia, despite having 7-8 lesions on my brain MRI and some non-conclusive blood work, such as high SE and c-reactive protein.  

While I was undiagnosed I was given oral steroids (prednisone), for about a month, and though I felt great for a short time, after they wore off I sunk down to worse than ever, and that is when I had to stop working full time.  

Over the course of the year I spent looking for help, I did run into Lyme as a possibility.  But I tested negative for it several times through ELISA, and also through my spinal tap.  But once I was unable to work and had exhausted every other path I could think of, I figured I might as well see an LLMD.  My first appointment was in late Nov. '08, and I was diagnosed clinically that day.  I guess the rest is history.

Phtartist, thank you for commending my effects to work through my illness.  I appreciate how that is a deeply personal decision and that some people are more sick than others.  I was fortunate, and was working under special circumstances that made it possible for me to work a flexible schedule AND for my huge drop in productivity to be tolerated.  The one thing against me was that it was not a permanent position, so I had the end of my term hanging over my head.  But overall I know that I was extremely lucky to pull this off and to keep my career in tack through the eyes of outsiders, even if privately I knew it was severely impacted.

So, to summarize my rambling, I think I was sick for 6 years or so before I got diagnosed, but I don't know for sure.  I was only "bad" for about 1.5 years before starting treatment.  I lived in Lyme endemic regions all of my life except for the past year, so it is possible that I was bit more than once in my life, despite my lack of ever seeing a tick on me.  I know I developed strange issues starting after summer '02, and that summer I was very acutely sick with infections (bronchitis, upper respiratory, inner ears, etc.).  So to me it makes sense to count that as the start of my illness.

I have been on abx since December '08, which sounds like a long time but I have only ever been on (relatively) low doses of oral abx.  My LLMD believes that long-term treatment is necessary, which is why he often forgoes IV's which ppl can only ever afford or tolerate for short term.  I'm a lot better than I was before, though I still Herx, flare, and experience a daily symptom load.  It took about nine months of treatment before I saw lasting improvement.

Hope all are having a good weekend...

[Phtartist]

For me I was a Special Ed. Teacher assistant and had to turn to a less stressful career, being I worked with emotionally disturbed teenage boys. So, I turned to a career I had years back, floral designer. That lasted five years but long days and on my feet all day proved to be too much especially with the short circuiting my brain was doing and feeling fluish.  Luckily, I am an artist so I was able to stay home and follow that career but depression and weakness took that from me. Bringing work to shows, setting up, showing up to openings etc. was too much.
As you can see I downgraded every time I turned around. My art work I am focusing on getting back to. I have been accumulating new pieces for when I can function.

I'm so afraid like ree, that the lower dose of abx is not doing the job, yet I feel like crap 95% of the time, which may be constant herxing or is it the Sjogren's I recently developed from having these diseases untreated so long.  I'm afraid, like Wonko, putting everything into getting better and working so hard to have a life while being ill, just to relapse and have to fight some more.  

I was so full of fire. I get hit with this BS and damn. It sure is humbling but scary. I feel like I'm on the fast track to old. I feel isolated.

WA WA WAaaa, that's enough whining from me LOL.
You girls are great to share with, before this, I had not a soul who got what this was like. Thanks and HUGs!
Have a great weekend to all :-)

[ree427]

Thank you, wonko for answering my questions. I am glad to hear how far you have come with your treatment.

Phtartist - I really understand what you are going through. I feel like crap 95% of the time also. I was also a very motivated and full of fire person before this disease. It is very isolating. I totally get it.

Thanks to all!

[Phtartist]

Thank you so much ree for your validation.
Today I spent the day with another killer headache and very weak. My husband promised to play Xbox with me, we're working on Splinter Cell Challenges but it never happened. Soccer was on, lawn to mow, friends to drive places, so I'm the one who sits, not feeling well enough to do what she wants but just what she can....video games (career gamer), by herself.
My Mom comes to visit Tues. That will be nice :0}

[ree427]

You are certainly welcome. I understand about not feeling well enough to do what you want. What makes matters worse is I have a 3 month old and I can't physically do all that I want to do with him. It tears my heart out. Then I have to deal with a mother-in-law who thinks my illness isn't real and it's all in my head. She had the nerve to say that she worries about the "environment" my son is in. I am not the devil, I am just sick. My husband sticks up for me then we end up in a fight with his mother. Anyway, sorry to let loose a little there, but it gets sooo frustrating!
Hope you have a good visit with your Mom on Tues.

[Phtartist]

I feel your anguish with your MIL! When you have a formal diagnosis maybe that will change. At least she'll no longer have any basis for her accusations!
I had the flimsy diagnosis of Fibromyalgia for so many years and with looking great, people thought. ( mine and my husbands family, )  that I was just using that as an excuse to not show up to get togethers like....Christmas!!  No calls to see how I was :-(.
Now we all know I had these Lyme diseases.....or do they even realize it was that in retrospect?

[ree427]

I had the diagnosis of Fibromyalgia also and was just told to exercise. I thought with three positive co-infection tests my mother-in-law would change her view, but she hasn't. I even invited her to go to a Lyme support group meeting with me and she declined.
I do not attend family events and holidays either. Everyone just thought I was depressed and causing my own symptoms. I always go back to the person I was before this illness who was social and enjoyed spending time with family. Why would I all of the sudden stop going to family get-togethers? Anyone who knew me well would know I would have to be really sick. It's a horrible feeling to be at home alone while everyone else is together enjoying themselves. I agree, a phone call would be the very least someone should do.

[Phtartist]

It is just as if we are living parallel lives!  
So you have had positive tests. I have you confused with a post I read from another one of the Lyme sufferers who are not yet diagnosed.
How dare she that ]%}]]^*%{]^. Ooop, sorry, judgmental people who have not walked in our shoes, are something that boil my blood.
I'm a Jersey girl through and through and have no problem writing these people off. BAM
My Mom was not getting what I was going through, being so self centered about me not showing up,  so I finally disengaged from her. Self preservation I call it. I had to have the voice to back it up and when my Mom had had enough we blew up. She broke down and said she would try to understand and have more compassion. Things are better now.
WE have to be good to ourselves first!


OK GIRLS, listen to this!.....I took your advice and called my Lyme doc to see him sooner being I've been worse. My head has been over the top in pain!!  He sees me today and several things went down.
He told me I'm not clearing the dye off from my blood so he lowered the ABX again. To clear my blood he prescribed parsley and berber. I asked for help with the over the top migraine and neuralgia and he said he doesn't do that. The parsley will clear my blood and lessen the pain. WWHAT?  So how many more weeks will I have this pain until the herbs arrive and take effect?
He said the SAM- e will help with the migraine. I asked if he was familiar with the bi-polar warning, he wasn't and I told him I had a previous diagnosis of being bi-polar. He said the SAM-e will help with the bi-polar, HUH?
I left crying,

[ree427]

I agree...I dislike judgemental people. It makes me very angry also. I can't say I haven't secretly wished a tick would bite some of these people. I know this sounds very cruel to say. Anyway, sometimes it is better to disengage some people even if it is family and find friends who are empathetic. I learned this at a Lyme support group.
Hey, sorry to hear that your conversation with your doctor did not go well. I would be curious as to how much experience this doctor has with treating Lyme. If it makes you feel better, I did hear that berber is good for reducing herxing symptoms.
I hope something works for you soon so you start feeling better. It's crazy what we have to go through everyday, isn't it??

[Phtartist]

LOL! Thank you! You have made me laugh!  Just a little tick bite lol.

The doctor I see is huge in the field of Lyme treatment. He has been focusing his practice on it for 25 years. I just want to not have the pain he is patient with me having.
My husband ordered the Parsley and the Berber, so I guess I will give it a try.

I did get for myself something I took years ago. It is a Candida treatment that worked great called Threelac. Some of my symptoms ie. Burning skin, yeast infection, etc. Are from the abx use.  
You're the best, hang in there.

[ree427]

Thanks, I am happy I  made you laugh!

Your doctor should know what he is doing since he has been practicing Lyme for such a long time. I know for myself that I have a difficult time trusting any doctor. I think that comes with the territory.

Threelac for yeast - I have a terrible candida problem also...Are you sure we are not twins?? lol  Anyway, my doctor has me on prescription Difflucan and I also take probiotics.

I am glad I have you to talk to.  Feel better soon.

[Phtartist]

This doctor suggested I not take Diflucan because I would feel sicker from Candida die-off. I told him the Candida has me feeling sick ie. Headache, bloating, infections, ear irritation, Etc. And I need to kill it, he upped my probiotics. I still don't feel right.

Recently I took Diflucan for two days and then Correctol the women's laxative. This laxative is gentle and since Candida grows colonies in our intestines, I thought this a good way to clean myself out!
What I had after this (I keep a symptom chart) was one symptom free day!!  To me that is proof positive that much of what I'm suffering from is yeast symptoms, yet he does not want me to take Diflucan.
Of course I told him I did this and he did not acknowledge the finding. Simply non-reactionary. To him he sees it as Lyme clearing out but when I asked him how Lyme clears out, he said from the blood.  Yeast I know, clears from the intestines!
It helps to write here. The more I hear myself, the more I think I need to get another doctor or keep him and just use him primarily for the antibiotic scrips.
I really should find a doctor that can help me get through this in comfort, some advice
even how to deal with the pain. He says that's not my area.
Neurological problems are a part of Lymes so it should be of concern to him. He should refer me to someone who can help me with that, to get over the hump.

[JackieCalifornia]

I got a serious yeast infection as well, and none of my docs recognized it for what it was, event the gastroenterologist who did a colonoscopy.  Yeast can, to my understanding, spread throughout the body and not remain simply within the intestinal system.  That's what happened to me -- I was bloated, foggy-brained, my teeth were loose and acheing, my eyes were red, I was very tired and not thinking clearly at all.  Most docs assume a 'yeast infection' is a pesky v*ginal infection, but this was a very serious systemic infection.  Finally my LLMD tested my blood for yeast, and it came back very very high.

I went on Diflucan for an extended period of time (months), not just a week, and stripped all sugars and grains out of my diet, eating only greens and protein for a period of time, with the object of starving the yeast out.  This was a drastic approach and done only with my doctor's supervision, but it worked.  I have read that some people are more susceptible to yeast infections, simply because of genes, and this may be the case for me.  I don't know.

Yeast does colonize and root in the intestines, but it can also spread through the body, so be cautious and if you think it's gone beyond a simple infection, then insist with your doc that you be blood-tested.  The extent of my yeast infection was unusual, but just sayin' -- be careful out there.

[ree427]

My doctor tested me for yeast in the blood and it came back very high. So I guess I have what you would call a systemic yeast infection also. She wants me to take Difflucan for 10 days straight each month. I know a systemic yeast infection can be pretty serioius from what I understand and there are many different kinds of candida just like there are many different kinds of bacteria. I am not sure if the Difflucan kills all kinds of candida or just the one she tested me for. I know I also need to cut sugar out of my diet big time because that just feeds the yeast.
Thank you.

[Phtartist]

Be religious about taking the Diflucan. Your symptoms can be exasperated and others added if you have yeast in your blood.
Low sugar intake is seriously important. Candida, no matter what strain can grow like mold on wood in our bodies with glucose present. It forms colonies in our intestines and grows in any opportunistic moist area it can.
It can change your daily life for the better, when this fungus is removed from our systems.  The Diflucan is very good at working on the fungal candidiasis but omitting sugar in all forms is of major importance, until it is cleared and for a while after. Take your probiotics regularly also.
Forgive me if you know all this. You said the word "need to" which indicates you haven't yet.  This will change how you feel for the better.
The no sugar thing is difficult. We look to sugar when stressed, it is often a source of comfort.  I binge on occasion but after years of setting my mind on the horrors of sugar, I have found the perfect cookie where one will work for me. Each season I take the lesser evil and choose a fruit as my sweet, yea, I know, not the same as cake, frustrating but for me it is always a tug of war.

On a good note.
, your doctor actually tested, I've had four doctors on the Diflucan scene with me. None tested to see how serious it is, my cardiologist insisted it was not systemic with me yet another doctor hears a heart murmur for the first time, one doctor(gyno) recognized I had vag. yeast and wrote me out 60 days worth of Diflucan one kept giving me one dose at a time (my internist) and my Lyme dr. Says to take more probiotics, none tested!
You are fortunate to know what you are dealing with.

[JackieCalifornia]

From what I read, an acidic body chemistry environment helps yeast thrive, so part of the trick in killing the yeast is to alkalize, that is, to move the pH the other way to be not as acidic.  

There are lots of sources online on how to alkalize your diet, and while it seems difficult at first, esp when not feeling well or thinking clearly due to the yeast, it really helped me.  The first week was difficult, but not much worse than how lousy I was feeling to start with.  I think it was yeast die-off that was making me feel temporarily worse.  Definitely worth doing, however.  

Sounds like Phtartist and I went through similar situations and are glad to be out the other side!  

[Phtartist]

Thanks Jackie. I know an alkaline body in general is a good idea, I even got an App for PH foods on my iPad BUT I never ever knew it played a role in yeast production! Gees the things that just don't occur to me!

I went to the National Lyme Association site and registered. They have a doctor referral section that is people run, like this.
I found and called a doctor down the road  from me. He is a neurologist and after explaining the method the present dr. Is using with me, they were surprised with such a lax treatment, yet they did say herbs work.
I told them pulling back on treatment to spare symptoms is not my style. I want a combo of main stream medicine and assertive care, not waiting for herbs to work weeks/ months after symptoms are severe, as they are in me.
Unfortunately I got an appt. in the fall but I'm on the waiting list. It may help I know his wife. LOL

[JackieCalifornia]

Yeah, time to call your friend, Mrs Doctor, and see what happens.  I would.  This is war against the bugz.

I didn't know about pH and yeast either ... and I had no idea I even had a yeast infection, but then I was so brain-fried I had no idea of anything else either.  

Lyme is the wild wild west of medicine, so the docs are all over the map, and the squelching effect the IDSA has on docs just makes it all worse.  Sounds like Dr Neuro may actually be openminded.  Hallelujah!  

[Phtartist]

Yes, this site I went on so so covert! Dr.'s names can only be insinuated by town and first letters of last names. What we write has to be carefully worded and any responses have to be by private message only. :-o
The doctors are working with their tail tucked.

I did write an e-mail today to the psych/neuro dr. Who saw me for over a year for depression and assorted dysfunction of my neuro system.
He is a top guy in the ILADS. Keynote speaker at the last Lyme seminar in NJ who has written a serious journal on the subject.

My question to him in the end of the message, after reacquainting him with me was, "why did you not see this Lyme disease patient when she was right in front of you?"

He went on and treated me for depression and localized neuralgia. I asked him to help me test for specific illness and he said " I could test all I wanted And be treated and never really find what is wrong."
I point blank said to him...so essentially I'm screwed........He replied, yes.

He deserved the "where was your mind" letter