New Treatment

I’m starting a new treatment tomorrow. As some might know I’ve suffered illness for many years now. 21 of 29 years I’ve spent ill. I can’t emphasize enough the amount of pain and anxiety it’s caused.

I’m making a decision to begin a treatment tomorrow that is in opposition to my specialists opinion. I stayed with this specialist because my research lead me to him, I trusted him, and over 6 years his treatment was partially effective in targeting the infection we presumed was the cause of my suffering. I think we were partially correct.

I suspect there is a piece of the puzzle my specialist is missing and so I’ve gone again in search and drawn a pretty solid hypothesis. It is a "guess" at best, but a guess with very real circumstantial evidence supporting it. I will be using an antibiotic, I will attempt to attack an infection called Bartonella, often a co-infection spread along side Lyme Disease which is carried by ticks. Medical science is in extreme flux over both diseases, as to whether they exist or not in chronic form. Regardless, the fact is — antibiotics work in my case, so it’s a bacterial infection, but it appears to be deep rooted and resisting improvement with the Tetracycline. Some symptoms specifically have improved greatly, pain, muscle cramps, fatigue, joint pain, but the digestive and psychiatric symptoms have only improved perhaps 25% relative to the others.

It is my suspicion that if I use an antibiotic which this Bartonella like organism is extremely sensitive to, I should improve pretty quickly. The improvements should be psychiatric, (mood, cognitive, dreams, sleep, memory, behavior modulation) as well as digestive (Upper digestive disease, and lower — but inflamed, often painful, and bloated). Bartonella is known for causing both as it’s primary symptoms.

The drug is Levaquin, which is a very dangerous drug when used for more than 2 weeks. I have managed to convince one physician to prescribe and take responsibility for the treatment, and another to blood test every 2 weeks. Neither of them is my infectious disease specialist. They’re depending on me to make the right choice. The treatment will last 3-4 months. I’m terrified. I have used Levaquin in the past. I used it via IV while hospitalized and then orally for two weeks upon leaving the hospital. My health improved drastically after using it, within a months time I suddenly could walk more, go outside longer, etc. The problem with my hypothesis is that I was also using IV Vancomycin, Oral Pencilin, and Bactrim all within the same period of the Levaquin. I suspect based on my research that neither Pen or Bac contributed significantly to the improvement, as neither targets Lyme or Bartonella very much. However, IV Vanco attacks Lyme quite harshly, thus that could have been the cause of my improvements. Levaquin on the other hand could have been the cause of my improvements as my psychiatric, digestive as well as other physical symptoms improved. Either drug could have been the cause. Now, the factor that led me to narrow down further to Levaquin was that during the use of IV Vanc and Oral Pen, I developed an allergy to one of them. None of the doctors know which one since I was one both at the time. So, going back to both isn’t a wise option, — Oral Pen would be useless, but IV Vanco might hold the key. Regardless, I can’t return easily to it as the risk is much higher than going after the Levaquin first.

I certainly hope this makes sense.

I have done my research, consulted my other physicians and I’ve gotten an array of responses, mostly positive. I am informed. My physicians feel that we’re on the cutting edge of science, that medicine can’t tell me what to do at this point, I have to experiment based on the best possible data available, and so I am. I am fortunate I have support from people willing to possibly do harm, to take risks with me. I absolve them of the consequences of treatment should they be a poor outcome, including death.

Making this decision is hard on me, and I wanted to tell you all that, because I need support. I don’t know whether the treatment will work. I know my presumption is reasonable enough to warrant the attempt. I know the risks, and I’m nervous. Have I said that? You know I really am! Going against the only doctor who has helped me, and improved my health is enormous. He and I had a discussion recently, and I told him there may come a time when I will have to — in spite of my trust and respect of him — choose to oppose him in some cases and make decisions on my own. I told him "You are a fantastic physician, you have saved my life, but you have not cured me, and that you told me you could do. Clearly we now see that you can not, having spent 6 years fighting this war. He agreed, he could not say that was in his power anymore. and I said "While you may not have all the answers, you’ve certainly become someone I depend on and debate the process with regardless of whether I follow your instruction. Until now I have done everything your way willingly, I will likely need to take risks you don’t support." His response was simple "You’re right, I can only work within the framework of good science, and you’ve reached that limit. You’ve done everything in your power and I’ve tried my best as well. I don’t have the answers now."

So that day has come.

It is unfortunate I don’t have all the answers and have to make a decision like this alone (ultimately it really is alone since no one else knows what to do either), but sometimes that is necessary in life. Sometimes we can do our very best and still lose. I prefer this not be one of those times.

Thank you for reading, and perhaps even empathizing.

1: Starting a new dangerous treatment that may answer the questions as to why I have not improved as much as I should have over the last 6 years.
2: I’m afraid.
3: My specialist who has helped me improve my health does not support my hypothesis. He has hit a wall and admits he doesn’t know what else to do. I’m 50% improved most of the time, but still disabled.
4: I managed to get support from other physicians based on my presentation to each one. They saw merit.
5: I have the drug, and begin tomorrow.
6: Please support me, whether with stories of your own risks you’ve taken, or times you had to stand alone when others told you that you were wrong (And you ended up being right).

Wow
I am totally speechless.
You are such an inspiration!
And even though I don’t know you nor talked to you on OT before, I am so proud of you for having such great strength to do something like this.

If you ever need support or just someone to talk to you, you can always PM me.. it would really be an honor to talk to someone like you.

I hope you find the cure, and all the answers that you’ve been so long searching for. And I hope you continue to be as strong (or stronger) in fighting your illness.

And if the mod can create a sticky here where you can keep us updated that would awesome!
If a sticky can’t be made for some reason, then please update us (or me) with whatever you come up with.

Good luck and my prayers are definitely with you.
i hope you have done your research and follow the doctor who gave you the script’s instructions to the T.

I hope it works out for you.

Wow
I am totally speechless.
You are such an inspiration!
And even though I don’t know you nor talked to you on OT before, I am so proud of you for having such great strength to do something like this.

While I respect your overwhelming response of support (thank you), I feel that if you were to step into my shoes you would realize that breathing is as natural to you, as fighting this war to regain my health is to me. It is hard to see myself as inspiring, because I am simply "learning to breath." I do appreciate if others get something out of my misfortune and my willingness or ability to try to overcome those obstacles, but I am by no means grateful or happy to have endured it. And in that, I wish I weren’t inspiring, at least not in this way.

If you ever need support or just someone to talk to you, you can always PM me.. it would really be an honor to talk to someone like you.

Thank you. I think I understand the value of talking about these things.

I hope you find the cure, and all the answers that you’ve been so long searching for. And I hope you continue to be as strong (or stronger) in fighting your illness.

I feel so inadequate. Isn’t that ironic and a bit sad? I don’t see strength, I see exhaustion, years lost, relationships torn apart, and a loss of control over my own behavior. I know literally what it’s like to go insane, to live inside a mind which is no working. A biological infection, consuming me, and causing me to yell at people I love, act strangely, to be irritable and cruel, self centered, and entirely a miserable human being. I did not choose these things, they were the result of damage being done to my body and brain, but I still had to be responsible for the results, because that is life, and that is the limit of which others can understand. Imagine yelling at someone you love — being entirely irrational — and knowing it while you’re doing it, but not being able to stop. Knowing you’re losing your mind, and literally parts of yourself, yet entirely unable to isolate the behavior. You can’t compartmentalize this illness, not like other conditions. It attacks everything. There is no place to hide, not even in your mind.

I am deeply hateful and disturbed by what I’ve fought. I do not take credit for my survival. I think my survival was fortunate, often a result of intervention from people, books, or external events I witnessed, which again often were by good fortune. The only part I’m willing to take any credit for is that I made a conscious decision to stay alive at all cost, to finish the war in one of two ways. I either win, or lose, and if I lose — the condition either must kill me, or I will go to my grave into old age fighting the illness.

The other option was suicide, which is extremely common among patients with this illness. People judge suicidal patients, but until it happens to them, they can’t possibly understand that the feelings aren’t necessarily a reflection of character. I have a very strong character, I know my sense of self which is waiting for me beneath this dysfunctional body and mind — I’ve written it down, like copying a hard drive of the mind, onto paper. I’ve written down who I am, when small glimpses would appear. It’s not commitment, passion, or anything other than pure desire to survive which led me to do that. I had to find away to keep my psyche in tac even while it dissolved.

And if the mod can create a sticky here where you can keep us updated that would awesome!
If a sticky can’t be made for some reason, then please update us (or me) with whatever you come up with.

Good luck and my prayers are definitely with you.

Thank you. I do not want this thread to have a sticky, but I will update it. It will be hard on me to do so, but I have to write an update everyday anyway. I really don’t want to die. It’s just not who I choose to be at this time.

Faith, that’s a whole other battle field that I’m struggling with.

i hope you have done your research and follow the doctor who gave you the script’s instructions to the T.

I hope it works out for you.

Thank you, for all the advice or knowledge I’ve ever taken, or given — I’ve not for one moment avoided with full passion to take my own advice first and to master it, before expecting anyone else to.

It is an irony that I’m taking a script from someone who has not idea why he’s giving it to me, beyond a guess — a shot in the dark based on some data that could easily be distorted by numerous variables, and yet — he’s taking the risk.

The instructions are simple:

1: Take broad spectrum probiotics each day, separated from the time of the antibiotic by 3 hours each way.
2: Take the rest of my medications as instructed.
3: Use 500mg Magnesium a day to avoid tendon rupture (Levaquin causes this in some cases), as well as 500mg x 1 of the Levaquin, and finally the proton pump inhibitor, which increases the strength of the Levaquin in fighting the Bartonella — otherwise known as Nexium. I must take that separately from my morning drugs, as I already take another antibiotic — Tetracycline, prescribed by the Infectious Disease specialist.
4: Last but not least the prescribing doctor recommended testing my blood once per month. I did one better and recommended every 2 weeks instead. The risk of kidney failure, liver failure, brain damage, and damage to the immune system as well as joints are all major concerns with long term use of Levaquin, so I think even greater monitoring is wise.

I would say I’m doing my best to adhere to the recommendations on the use of the Levaquin, but as far as whether I "should" be using it to begin with — that’s where no one agrees. Nobody knows what is right or wrong. It scares me, but I am committed and will find away to detach my feelings once I begin. I can’t be afraid the moment I pop that first pill in 6 hours.
As you guys show support, please be aware I will express feelings at length about whatever is said. I obviously am in a position where I need to really be self centered, and that may mean pulling apart what you say to express how I am feeling. I need to do that, to center myself. It has nothing to do with any of you personally. It helps me to talk at people, not merely to them in situations like this.

Thank you, I just began the first dose. I read the pamphlet that came with the medication to make sure I didn’t miss anything and sure enough, I did. I’m glad I’ve constantly reviewed everything.

What I missed was this: You have to take the Magesium supplement 2 hours away from the Levaquin. I totally forgot about that. So I was able to take the Levaquin aound 8:30 a.m. and now I’ll take the Mag at 12.
Update: I will not be pursuing this therapy. I’m extremely upset. I’m not upset so much that I am unable to pursue the therapy, but rather that the one physician who has improved my situation greatly has made it abundantly clear he may no longer be my doctor as a result of pursuing this proposal. I sent him an update today before making any further decisions, and his response was strong enough to warrant discontinuation.

I am shocked, very anxious that he may no longer treat me, but I don’t believe I made poor decisions. I had to make sure I’d covered my ground and made a solid attempt. I needed to make the right decision.

Here is Dr. D’s response:

Thank you for the note/update; I appreciate that you have to make some of your own decisions, but I can’t condone the use of Levaquin for treatment of Lyme disease or any of the coinfections, as there is no credible data currently available in that regard, and I remain concerned about both the known risks of neurotoxicity and tendon damage.

You are welcome to transfer your care to Dr Cooke and continue under the care of your PCP, but I will not be able to prescribe additional tetracycline while you are on Levaquin.

Please also note that I will not be able to respond to patient emails in the future.

Best wishes
Dr Donta

My response:

Dr. D,
Treatment for Lyme is more important than using the Levaquin. I thought you may not be comfortable so I e-mailed the update today to confirm your opinion. I will not pursue that protocol. I appreciate the candid
response. I would prefer to continue working together.

Sincerely,
Michael P.
All I can say is – "Do not fuck up."

Whats else you want us to say?

Good Luck.

All I can say is – "Do not fuck up."

Whats else you want us to say?

Good Luck.

If I was going to continue, that’s about the best advice anyone could give me. I appreciate it, because it was really all about morale.
Good luck Metallic. I dont post much in here but I always read your posts.
Suffering from physical problems is never good.

Good luck Metallic. I dont post much in here but I always read your posts.
Suffering from physical problems is never good.

Thank you, I appreciate your response. I’ve chosen to abandon this new treatment.
Your doctor is probably worried since the effects of the therapy are unknown.. and that is very scary.

I think you made the right decision by sticking with your doctor.. especially since he’s been treating you for so long, and you have shown some improvement with him (?).

But please do continue to update us with your illness in either case.

Your doctor is probably worried since the effects of the therapy are unknown.. and that is very scary.

I think you made the right decision by sticking with your doctor.. especially since he’s been treating you for so long, and you have shown some improvement with him (?).

But please do continue to update us with your illness in either case.

Thank you for your post. Yes I have improved. I was most certainly going to die had my specialists (Lyme Disease) antibiotic therapy not worked. I had seen so many doctors and no one knew what to do, and those who did think they knew what to do either wanted me on psychiatric meds, or steroids. They kept diagnosing me with so many things, but none of them had solutions, nor were any of their treatments working.

This doctor has improved my health to a point where I’m split, nearly 50/50. It’s not enough to live a good life, but it’s not enough where I’m in agony or going to die. I’m caught in a sort of limbo. I look and appear entirely healthy, yet my symptoms are strong enough to prevent me from being functional in a consistent way that allows me to pursue goals, schooling, etc.

It’s a very unhappy place to be, but it’s far better than death. I am terribly concerned now. He may not wish to continue working with me. It is clear he is angry, though restraining himself. I’m sure it is hard to say what he’s saying to a patient he’s worked with for 6 years. Firing a patient is tough for health care professionals, but it’s also hard to fire them from my point of view, since I’ve had to do that a lot in my life.

My anxiety will settle once I get a clear response from him whether he’ll continue working with me and whether his response over "E-mail" was a coincidence applicable to all patients, or a slap in the face aimed at only me.
I think you made a good choice also. It was probably hard for you’re Dr who has been treating you to hear you wanted to try something else. I think it put him in a hard place also. If anything went wrong, it could have been a liability to him. He probably felt torn between continuing with a patient who hes been seeing and probably cares about, and having a possible death or something else bad associated with a dangerous treatment.

Either way, I think you made a good decision.

I’m real sorry about your limbo state though. I can only imagine being well enough to apear well, but ill enough to not be able to function. You say you’ve been sick for 29 years. How old are you now if you don’t mind me asking? I’ve read up on some Lyme Disease websites, and many say treatment normally "cures" it, and the course is only a few weeks. I’m curious as to how this has been taking so long. Was it not caught early enough for it to be treated succesfully? Don’t mean to pry, just curious.

You so accurately reflected exactly what I felt. Thank you for that. I feel quite alone even though I know I have support, so it helps reading this from someone else.

Either way, I think you made a good decision.

I think so too. I don’t like to flip flop, but I have to gauge the views people hold constantly in regards to this. I’m in a bad position.

I’m real sorry about your limbo state though. I can only imagine being well enough to apear well, but ill enough to not be able to function. You say you’ve been sick for 29 years. How old are you now if you don’t mind me asking? I’ve read up on some Lyme Disease websites, and many say treatment normally "cures" it, and the course is only a few weeks. I’m curious as to how this has been taking so long. Was it not caught early enough for it to be treated succesfully? Don’t mean to pry, just curious.

That is where the controversy is. There are two separate medical "camps" in regards to Lyme Disease. One group says Lyme is hard to catch, easy to cure. The other group says it’s an extremely persistent infection which resists antibiotic therapy, and requires chronic antibiotic use to overcome the illness or — in some cases — suppress the illness to prevent the patients suffering. I’m sadly in the second group. I was not diagnosed soon enough. I was 9 years old when I was infected (1987), but I was not diagnosed until 2002. I’ve been ill since age 9, I’m currently turning 30 shortly. I won’t ever accept that there isn’t an answer, but I have to constantly weigh and balance cutting edge views against the backdrop.

If only I could somehow find an answer. I search endlessly. I’ve studied relentlessly and I still can’t solve this problem. The key is in some for of antibiotic, but one which is effective entirely does not appear to exist.

Go to Wikipedia and read up on Lyme Disease there, and you’ll get the full picture. You’ll be shocked, it’s disturbing.
Thats a long time to not catch it. What were the diagnosis’s for those 15 years? Man that must have been frustrating. Did they end up asking "Have you ever been bitten by a tick?" And you remembered 15 years ago you were camping or whatever? I had no idea the NE was so effected by lyme. I lived in North New Jersey for 13 years as a kid and I would run around in the woods, do normal kid stuff. Scary to think about now. I’m in a slightly anxious state right now. In reading about Lyme, I was side tracked by an article on Bell’s Palsy, read symptoms of that for about 45 minutes, so now I’m in a bit of a nervous state, so I’m gonna hold off on the Wiki of Lyme, lol. Hypochondriacs should have blocks put on any medical website, lol.

It was awfu. I fought tooth and nail to get the correct diagnosis. It turned out Lyme causes all these symptoms and these are common misdiagnosis or secondary diagnosis underlying Lyme.

Manic Depression, Clinical Depression, Anorexia, ADHD, Crohn’s Disease, Chronic Fatigue Syndrome, Fibromyalgia, Acid Reflux, Post Traumatic Stress Disorder, Mood Disorder, Social Anxiety Disorder, Insomnia, Hypoglycemia, Kidney Stones, Hypochondria, Anemia, Chronic Lyme Disease.

Here is the progression of symptoms. I’ve kept records of everything:






Did they end up asking "Have you ever been bitten by a tick?" And you remembered 15 years ago you were camping or whatever? I had no idea the NE was so effected by lyme. I lived in North New Jersey for 13 years as a kid and I would run around in the woods, do normal kid stuff. Scary to think about now.

I had been bitten by ticks, however I didn’t remember the exact tick that bit me. I remember coming home from camping in Rhode Island, and I came down with the most diabilitating fever and pain in my legs. It was clearly connected as my health continued declining from that point forward. It happened within 2-3 weeks of returning from camping.

Yes, Lyme Disease is a very serious problem in the NE as well as other areas. The problem is that people are often misdiagnosed. So people with MS, Fibro, CFS — all sorts of things, could actually be infected, but they simply aren’t getting diagnosed. Testing is very inaccurate for Lyme, so it’s hard to pick up objectively.

I’m in a slightly anxious state right now. In reading about Lyme, I was side tracked by an article on Bell’s Palsy, read symptoms of that for about 45 minutes, so now I’m in a bit of a nervous state, so I’m gonna hold off on the Wiki of Lyme, lol. Hypochondriacs should have blocks put on any medical website, lol.

Yeah, Hypochondria can be very hard to deal with.

It was awfu. I fought tooth and nail to get the correct diagnosis. It turned out Lyme causes all these symptoms and these are common misdiagnosis or secondary diagnosis underlying Lyme.

Manic Depression, Clinical Depression, Anorexia, ADHD, Crohn’s Disease, Chronic Fatigue Syndrome, Fibromyalgia, Acid Reflux, Post Traumatic Stress Disorder, Mood Disorder, Social Anxiety Disorder, Insomnia, Hypoglycemia, Kidney Stones, Hypochondria, Anemia, Chronic Lyme Disease.

Here is the progression of symptoms. I’ve kept records of everything:






I had been bitten by ticks, however I didn’t remember the exact tick that bit me. I remember coming home from camping in Rhode Island, and I came down with the most diabilitating fever and pain in my legs. It was clearly connected as my health continued declining from that point forward. It happened within 2-3 weeks of returning from camping.

Yes, Lyme Disease is a very serious problem in the NE as well as other areas. The problem is that people are often misdiagnosed. So people with MS, Fibro, CFS — all sorts of things, could actually be infected, but they simply aren’t getting diagnosed. Testing is very inaccurate for Lyme, so it’s hard to pick up objectively.

Yeah, Hypochondria can be very hard to deal with.

Man, half that shit I get just from eating fajitas.
Whats odd is that almost all of those are very common for people with GAD (generalized anxiety disorder). I have had almost all of them.

A

Thats a list of your things that I also have had since my anxiety started in 2003. Just kinda weird that we’ve had many of the same symptoms.

Then perhaps it’s not generalized anxiety disorder. You’d know if it were more serious though, as you’d become disabled and the symptoms would gradually worsen.

I’m guessing the severity is worse for you on alot of those though. Like, everyone gets muscle cramps, headaches, nightmares, irritability, etc. But, Do you think the severity of the symptoms you were getting are above the average level?

Yes, but that’s also one of the reasons for the controversy, because people infected with Lyme often don’t have those symptoms to the level I do, but they’re still infected, but they are dismissed by doctors — as though it’s all in their head. That’s what happened to me. It wasn’t until I was diagnosed correctly and put on long term antibiotics that I began improving. It took years of therapy to even see consistent results where I knew I was on the right track.

No he didn’t. I really hope he does. I think he’s very angry with me. He probably feels insulted even though he says otherwise. I don’t think he thought I’d really go this far to make my own way.

Hopefully he’ll return my phone call and we can talk it out. My goal is to get well. His goal is to get me well and he’s invested a lot of time in getting me this far, so it must have felt like a slap in the face, especially knowing how dangerous the treatment is, and his experience with it.
Do you believe this doctor is invested in seeing you through this disease?

And if so, do you believe this doctor is familiar enough with the area to be able to see you through this disease.

And lastly, assuming the above two are true, when can you expect a significant remission of symptoms to the point where you are essentially either cured or at least asymptomatic?

Good luck to you.
Its normal for a human to fight and do what he has to do to survive. If a treatment is working 50%, I don’t think it was wrong that you went looking for answers and options, I think its on more of a personal level, which it shouldn’t be.

When I was in therapy for my panic attacks, I went for about 9 weeks with little to no improvement. I told my therapist I didn’t want to come anymore because I was going to try seeing a hypnotherapist. He laughed. When I asked why, he rolled his eyes and said "Hypnosis? OK, good luck with that one." I walked out. He was only making me 1% better, and that 1% was only because he said I wasn’t the only one with this. I was hypnotised ONCE and I have only had about 6 or 7 panic attacks in 5 years. Thats going from 6 or 7 a DAY for a long time. I still worry, think irrationally, and have some mild anxiety and hypochondria, but I can live with it and improve it. Before, I was desperate, scared and about to check into a hospital. About 4 months later, I went back to that therapist to tell him I was cured of my panic attacks from hypnosis and next time someone wanted to take another route, not to laugh at them. He seemed annoyed.

But, I think its normal for us as suffering humans to always seek out ways of getting healthy. I don’t think it was rude or wrong of you to want that other 50% back. I think it was rude for this to turn personal in the eyes of the Dr, because thats where I believe the tension is coming from. That and the liability. But anger? I don’t think thats justified.

Yes

And if so, do you believe this doctor is familiar enough with the area to be able to see you through this disease.

Sadly I don’t think anyone is, there is too much they don’t know objectively, but if anyone is going to find an answer, he’s certainly in the top tier.

And lastly, assuming the above two are true, when can you expect a significant remission of symptoms to the point where you are essentially either cured or at least asymptomatic?

Originally it was to take 18 months, but when 18 months came and went and I hadn’t seen any improvements he simply said, "It’s unfortunate, but that’s how it is with some patients. We’ll keep going because you will see improvement eventually" of course I was bitter and said "When, seriously, when?"

I doubted his ability for a long time, doubted the diagnosis, doubted the treatment. I was so sick and I’d spent so much time researching, that I had no where else to go. I’d seen 150 + doctors. It was so painfully sad, no one had an answer beyond "I don’t know, a misdiagnosis, or a vague diagnosis only labeling a small portion of the overall disease (Acid reflux as an example, or Depression). I spent 3 1/2 years "not" seeing any meaningful results. So not only did 18 months go by, it ended up taking 30 months to see "something". Then, right around 2005 we did a round of IV antibiotics and that seemed to kick it up a notch, and I began noticing that the Tetracycline was now also working. We had chipped away enough to where I actually began to start feeling better.

When I began seeing days where I was 40% functional, I knew I was on the right track. When I was able to shower myself, and brush my teeth consistently, and I could walk around without a cane. When I began going outside for brief periods I really felt I was on the right track. When I saw 50%, I absolutely felt confident. I even peaked sometimes where I was around 60%. I could lift weights, ride my bike, do push ups. I still had a lot of symptoms and cognitive problems were always ongoing, but I was "better" — however peaks don’t last. He told me they wouldn’t, that it’s a gradual chipping away process, but then you backslid as the infection takes hold again. Gradually the infection load is reduced, but it persists.

I am improving, but we’ve invested so many years. His answer is always consistent and always the same. "Persistence is key with Chronic Lyme. It’s extremely slow, and I understand that, but keep going."

He’s been right about everything except that he could solve the problem within the original time frame. He told me that I’m unfortunately one of a small percentage who just don’t respond well to the available treatments.

Good luck to you.

Thank you Johan. I’m really desperate for an answer, but not a foolish one. I felt good about my idea, but I most certainly didn’t know where it would go and I refused to lie or hide anything. People were giving me all sorts of advice. Take the med, but don’t tell him! No fuckin’ way was I going to do that. Our relationship was solid and I trusted him enough to always be forthcoming.

In the end, I figured as long as I could stay with Dr. D and do the Levaquin, I could take the risk and if it worked, fantastic, if it didn’t I could continue on as I had. Dr. D however as you can see was seriously concerned about the danger, and he should be. He was so concerned that even though another doctor prescribed it for a different illness, he was still going to drop me! I was concerned too, but I was willing to take the risk, but I am "not" willing to do it if that means losing Dr. D.

Exactly. I’m sure Dr. D knows that. He surely felt offended, but also extremely concerned I think, because he knew I was serious. He needed to scare me I think. He has never been so curt and cold before. It was a clear hardline.

When I was in therapy for my panic attacks, I went for about 9 weeks with little to no improvement. I told my therapist I didn’t want to come anymore because I was going to try seeing a hypnotherapist. He laughed. When I asked why, he rolled his eyes and said "Hypnosis? OK, good luck with that one." I walked out. He was only making me 1% better, and that 1% was only because he said I wasn’t the only one with this. I was hypnotised ONCE and I have only had about 6 or 7 panic attacks in 5 years. Thats going from 6 or 7 a DAY for a long time. I still worry, think irrationally, and have some mild anxiety and hypochondria, but I can live with it and improve it. Before, I was desperate, scared and about to check into a hospital. About 4 months later, I went back to that therapist to tell him I was cured of my panic attacks from hypnosis and next time someone wanted to take another route, not to laugh at them. He seemed annoyed.

Scoffing at things which aren’t fully understood but which can do no harm is not wise. It’s a different story when you’re hooking up electric jumper cables to your nut sack thinking it will cure Cancer. Believe it or not people do things like that.

I’m skeptical about a lot of things, but being cynical is foolish.

But, I think its normal for us as suffering humans to always seek out ways of getting healthy. I don’t think it was rude or wrong of you to want that other 50% back. I think it was rude for this to turn personal in the eyes of the Dr, because thats where I believe the tension is coming from. That and the liability. But anger? I don’t think thats justified.

My mother told me she could see both sides. She explained what she felt was going on with him. After she talked to me I was more willing to embrace his view. He’s certainly pissed because he saw that in-spite of his prior advice about pursuing this avenue I still arranged everything and managed to actually get the prescription. He also thinks — I’m sure — that by getting the prescription from Dr. C (Another doctor who indicated he could use Levaquin for Inflammatory Bowel Disease) that it was deception as a way to get the medication.

Dr. D and I need to talk directly, that’s what it comes down to. He won’t call me though until he is both available and not pissed.
Dude…levaquin is not dangerous. I suffer from chronic sinus infections that only levaquin gets rid of. I’ve been on it for over a month several times with no ill effect.
Dr. D responded finally. Here is what he said:

Thank you for your response.
If you feel like you’re at a plateau, we could try adding azithromycin and amantadine to the tetracycline. I think the azithromycin will be ok regards Crohn’s, but we’d have to wait and see. Otherwise, it’d be the tetracycline by itself for another few months.
Let me know if you want to try the added meds.
Best wishes for the New Year
Dr D

——

Notice he was warm and interested in my feelings. This is how we’ve always interacted. It’s always been amicable. We talk about things, you know?

My response to him:

Dr. Donta,
I appreciate the fast reply as well as your intensively persuasive
response. I realize my safety was your main concern and thus you responded
as you did. I do want to apologize to you if it seemed I was offensive in
arranging the planning and discussion of Levaquin as I did. I had no
intention of going off on my own with another physician if it meant being
disrespectful to your authority and the effort you’ve invested in my
treatment. I was extremely sensitive in explaining that to each doctor,
especially Dr. Cooke. I just needed to find out what everyone thought, as
they are my "team."

Had Dr Cooke told me the Levaquin would be used for Bartonella alone, and
that he would prescribe it, I would not have accepted it. It was pure
coincidence that he also used the drug for Inflammatory Bowel disease and
since I’d been complaining he prescribed it. Frankly I had no idea that
option existed for inflammatory bowel. I knew Flagyl and Cipro were
commonly used in fistulizing cases and that’s it. I would never undermine
or be devious in respect to your opinion and try to coax anyone on my team
into prescribing a dangerous medication.

You’ve gotten me a really long way, but there is a long way to go. I know
you know how to get me to the finish line, and I know you know I’m not
incompetent or unobjective. I may be desperate, but I’m not a fool. I hope
you respect and trust me to make the right decisions, just like I am making
this decision to continue with you in light of your hard-line warning of
Levaquin.

And of course I was entirely forthcoming in my update to you as I’ve always
been — in discussing exactly what I was doing or going to do prior to
making decisions. Your opinion was ultimately the most important and so I
listened and accepted it.

I will begin the azithromycin and amantadine. If you would fax the
prescription to the same place you’ve been filling my Tetracycline I would
appreciate it. Tell me how you want the medication used.

Sincerely,
Michael Parent
Good luck man – I’ve been through some crazy times these past almost 2 years. Strongyloides horrible staph infection gallbladder out every test under the sun hang in there I just started Cipro for 2 weeks

I started Cipro first then I got to Levaquin a little later then augmentin and then prednisone so much crap but here is to getting better!
OMG, I am so sorry that I missed this thread when it was originally posted.

I could call the doctors I mentioned before to you and get their opinion on the Zithromax and amantadine if you like. (As well as the Levaquin, just out of curiosity).

I know that you and Dr D have built a long standing relationship with your health. I am sure the reason he responded in the way he did is because if the Levaquin cause any serious damage then he would feel somewhat responsible. I know it is very difficult for any GOOD doctor to threaten to fire a patient (especially one they have built such a good repore with) but they will do whatever is necessary (tough love thing) to ensure the well being of their patients.

I am very glad that the two of you can work past this and continue to try new and safer ways to treat your illness.

I can not even begin to imagine what you are going through or how you are feeling. I want you to know though, I am here if you need someone to talk to or lend that helping hand in any way I can. You may feel alone with your illness, but you are not alone when it comes to support.

Hell, even if you are just angry and need someone to yell at/to, PM me (I’m really good at not taking things to heart when someone is angry and lashing out…lot’s of experience with that in the field I’m in.)

I know this is not the way you want to be an inspiration to others, but you have to remember, to go though any struggle and not give up and continue to fight, that DOES take a lot of courage and strength and that in itself is truly inspiring to others to not give up no matter how hard the battle.

I wish you all the luck Metallic, even though I don’t know you personally, you seem to be a very good and caring person and you deserve the best that life has to offer you. Again, if there is anything I can do to help, please do not hesitate to let me know.

Don’t worry about it.

I could call the doctors I mentioned before to you and get their opinion on the Zithromax and amantadine if you like. (As well as the Levaquin, just out of curiosity).

Levaquin is a no-go, but I have been using the Zithromax and Amantadine. I’m about 2 weeks in and I’m getting a Herxheimer reaction. I feel like shit. You can ask the doctors about their opinions on that combination if you wish. Always interesting to hear from others.

I know that you and Dr D have built a long standing relationship with your health. I am sure the reason he responded in the way he did is because if the Levaquin cause any serious damage then he would feel somewhat responsible. I know it is very difficult for any GOOD doctor to threaten to fire a patient (especially one they have built such a good repore with) but they will do whatever is necessary (tough love thing) to ensure the well being of their patients.

You’re right.

I am very glad that the two of you can work past this and continue to try new and safer ways to treat your illness.

I won’t stop until I beat it. I’ve had to take risks and go in the direction that was likely to have the best probability of giving me a solution. If I’m wrong, I’m wrong.

I can not even begin to imagine what you are going through or how you are feeling. I want you to know though, I am here if you need someone to talk to or lend that helping hand in any way I can. You may feel alone with your illness, but you are not alone when it comes to support.

I’m fine really. This has been a battle for 2 decades and the worst is over. I’m on the upswing, it’s just a matter of how long it’ll takes until I’m functional and consistent. This last two months I’ve been disabled and homebound.

Hell, even if you are just angry and need someone to yell at/to, PM me (I’m really good at not taking things to heart when someone is angry and lashing out…lot’s of experience with that in the field I’m in.)

Thanks, but seriously I’ve had my cheese and my whine and spilled my guts in the past to people who had no answers. No one could possibly understand what this condition is like except those who endure it, so I don’t talk about it emotionally. Everything is intellectualized and debated

If I have something to say about the deeper feelings I have I say it to one or two people, or my doctors and counselor.

I know this is not the way you want to be an inspiration to others, but you have to remember, to go though any struggle and not give up and continue to fight, that DOES take a lot of courage and strength and that in itself is truly inspiring to others to not give up no matter how hard the battle.

Of course it’s not the way I want it. If others are inspired, good for them. I don’t want a pat on the back for surviving.

"Let the right say I was wrong, let the weak say I was strong, it won’t be long, until I’m gone beyond the setting sun." – JF

In the end, I’m just using what I was given. I’ll do it until I die. Everyone is doing that, given their model of the world. Weak, strong, right, wrong, we all meet the same fate.

I wish you all the luck Metallic, even though I don’t know you personally, you seem to be a very good and caring person and you deserve the best that life has to offer you. Again, if there is anything I can do to help, please do not hesitate to let me know.

I do what is in my best interest, it’s just a coincidence that other people are influenced by it. Either I’ll accomplish the results I’m trying to create or I won’t, but I hardly deserve it more than you or anyone else. You get what you get, and you use it to your ability.

I sincerly hope this medication cures you, and that your recovery will be fast and safe from here on. I look forward to reading your updates.
I just wanted to add to the thread, although it’s past due, that it looks like you’re really doing your research rather than sitting around and being depressed about your situation and I really wanted to commend you on that. For someone who is weak from your condition you sound like a really strong person. My prayers are definitely with you and keep us updated you’ll be on my mind and in my heart.
Stay strong and positive. I hope you find a therapy that works for you.

I just had a bite from a tick a few days ago, I found it within 3 hours of it attaching it’s self and it’s now being tested. I’m on the westcoast, so only around 2% of ticks carry lyme. I’ll be fine though.
Good luck man, I think your taking the correct approach being pro-active, its exactly what my friend OT’er Steve Cronin did that landed him a diagnosis for a lymes infection (of which you helped him a great deal insofar as I can tell)

Best of luck

Good luck man, I think your taking the correct approach being pro-active, its exactly what my friend OT’er Steve Cronin did that landed him a diagnosis for a lymes infection (of which you helped him a great deal insofar as I can tell)

Best of luck

Yeah, Steve’s case bothered me quite a bit. I was confident in the diagnosis, but at the same time very worried that he wasn’t responding to earlier treatments. A lot of people here on OT, in his personal life and in his medical visits to physicians were telling him the diagnosis was basically wrong or they kept pushing other alternatives. Not only did it bother me, but it was very hard on him, he didn’t really know what to do and was being pulled back and forth. I think he took a big risk coming to Massachusetts, and spending the type of money he has to chase what others for the most part said was a ghost that some one he didn’t know on Off-topic was adamant about. I knew he’d respond to an antibiotic, I just wasn’t sure which one.
Wow, it’s too late for me to read the whole thread right now, but I read the first couple of posts and want to say something before I go to sleep. I had no idea man, though I see you post in here all the time.

I hope it works out for you sir.
I hope the day when you are free of this nightmare comes soon.

My troubles are tiny in comparison to yours, and your challenge has helped me gain some perspective on it. I thank you for this, and I once again wish you good luck.

Ever seen the Shawshank Redemption? It got me through my hardest times, perhaps it will help you as well.

Cheers.

Maybe I’m just having a bad day, I don’t know, but I feel like screaming at the top of my lungs. I hate this fucking disease, I hate that I’ve done everything in my power to beat it, and I hate that it’s hurting so many people.

I just need to say this, I need to yell and scream and just get angry. I’m so frustrated! I’m really really fuckin’ frustrated. And it’s not even about the letters, it’s just — it’s so overwhelming. It literally brings tears to my eyes how awful my life has been because of Lyme, how awful it must be affecting other people, and I feel so powerless sometimes to protect myself, never mind others, from what it’s done. I just want the pain to stop, and I want to fix the pain others are feeling — but I can’t do it all, I can’t expect that. I can’t even expect that I can fix myself. It hurts so God damn much.

I just, I don’t know — I just needed to say how I felt here, because it hurts a lot facing this. I’ve fought for so many years just to survive and I suddenly feel so weak. I don’t feel like the "strong" person everyone tells me I am. I feel tired, weak, exhausted. I feel like breathing takes more energy than I have right now.

Maybe I’m just having a bad day, I don’t know, but I feel like screaming at the top of my lungs. I hate this fucking disease, I hate that I’ve done everything in my power to beat it, and I hate that it’s hurting so many people.

I just need to say this, I need to yell and scream and just get angry. I’m so frustrated! I’m really really fuckin’ frustrated. And it’s not even about the letters, it’s just — it’s so overwhelming. It literally brings tears to my eyes how awful my life has been because of Lyme, how awful it must be affecting other people, and I feel so powerless sometimes to protect myself, never mind others, from what it’s done. I just want the pain to stop, and I want to fix the pain others are feeling — but I can’t do it all, I can’t expect that. I can’t even expect that I can fix myself. It hurts so God damn much.

I just, I don’t know — I just needed to say how I felt here, because it hurts a lot facing this. I’ve fought for so many years just to survive and I suddenly feel so weak. I don’t feel like the "strong" person everyone tells me I am. I feel tired, weak, exhausted. I feel like breathing takes more energy than I have right now.

I know somebody with Lyme disease. She is very young (~21). She doesn’t know I know she has Lyme. I’ve heard her talk sometimes about being ill all the time and hearing it made me very, very sad.

You’re trying to raise awareness, and this woman’s concerns are … what, exactly?

There’s a great deal of pain in the world, some from nature, some from simple selfishness, some from religion, but there’s a lot of good and a LOT of potential for good.

It silently breaks my heart every time I hear of someone else with it. I don’t show it much, but that’s what happens.

You’re trying to raise awareness, and this woman’s concerns are … what, exactly?

The quotes above in my last post with the bold, include her letters. It’s not even that she’s off. She’s accurate in what she’s saying – I’m just so overwhelmed by how to do the project. I guess her letter triggered my feelings. It brings up the truth that hundreds of thousands of people are affected when I do this project. People who are really hurting, you know, and I don’t want to fuck up and make it worse.

There’s a great deal of pain in the world, some from nature, some from simple selfishness, some from religion, but there’s a lot of good and a LOT of potential for good.

I just want to be apart of the good for once. You know? Make a difference and not be consumed in the process.
It a new day, and I’m pissed off as usual. I’ve been on the Azithromycin and Amantadine for about a month or so. I feel like shit, and I’m having my doubts as to whether it will work.

God I’m frustrated. Just needed to say that. I’m trying and trying to make this work but it appears I have a limited amount of options.

1: Stay with Donta, hope for the best with whatever treatments he tosses my way.
2: Spend some money and get expensive blood testing through specialty labs which lack credibility but may tell me more about what I’m facing and why I’m not improving.
3: Find a new doctor who will in most likely hood charge me a lot more, and I won’t be able to keep up financially which will lead to my bankrupcy.

I’m in a shit position. My girlfriend asked me today "Would you be willing to go behind your doctors back and treat other medication that may work?" I simply said I couldn’t be dishonest like that, not as long as I have a working relationship with him. If that relationship ends, then fine, but I won’t be deceitful.

I’m trapped in a fuckin’ prison, and I can’t seem to get out.

So, you have seen no improvement at all?

I know this must be very difficult for you right now. Sometimes we run into a dead end and we just have to turn around and try to find the next aisle to go down in the maze. It can be very frustrating but eventually we can make it through. You are NOT defeated here. There is a solution, you just haven’t found it YET. I know that you WILL find the solution because you ARE strong and you will not give up the fight right?

1: Stay with Donta, hope for the best with whatever treatments he tosses my way.
2: Spend some money and get expensive blood testing through specialty labs which lack credibility but may tell me more about what I’m facing and why I’m not improving.
3: Find a new doctor who will in most likely hood charge me a lot more, and I won’t be able to keep up financially which will lead to my bankrupcy.

You know I have been told by several doctor’s before that when a doctor has a patient for a long period of time, they (unintentionally) become too close to the patient and their circumstance. When this happens they sometimes try to hang on to the patient, try other things they are not really sure about, or can’t admit (due to either ego or feeling like a failure) they have run out of ideas because they truly want to help their patient. Unfortunately, this can ultimately hinder or even harm the patient. This is why, when you have a serious illness and your MD seems to have run out of ideas, it is a wise to seek out a new doctor to get a fresh perspective and possibly new ideas on methods of treatment. This can be a very scary thing to do because of fear of the unknown and fear of getting your hopes up only to be let down again. However, when it appears that you and your doctor have reached some sort of plateau, you have to ask yourself if you are willing to remain only 50% better and accept that or do you want to take the risk of being let down again to have some sort of chance to actually get 60-90% better or possibly cured?

I’m in a shit position. My girlfriend asked me today "Would you be willing to go behind your doctors back and treat other medication that may work?" I simply said I couldn’t be dishonest like that, not as long as I have a working relationship with him. If that relationship ends, then fine, but I won’t be deceitful.

I’m trapped in a fuckin’ prison, and I can’t seem to get out.

I truly wish there was an easier way to deal with your situation or better advise I could give you to help. Hang in there, don’t give up, you will win this fight (I have faith). Only you can decide what path to travel at this point, however if you need someone to lean on or a helping hand along that path, remember you have friends and family that care about you to lend you those things if needed.
No improvement that I’ve seen Punky but it can take awhile longer, and you’re right. And Z, thanks for writing me back. I’m looking at alternative testing sites now, trying to find labs that I believe can do the job correctly to test for somethings that may have come along for the ride with the Lyme Disease.

It’s possible a co-infection is present that just isn’t being resolved. It could be something else entirely. I’m financially trying to work out the issue now.

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