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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!
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
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
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!
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!
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
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
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!
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!
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.
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.
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.
Thank you.
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.
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.
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.
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.
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.
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.
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.
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.
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??
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??
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,
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,
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.
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.
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?
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?
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.
Hope you have a good visit with your Mom on Tues.
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}
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}
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 - 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!
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 :-)
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 :-)
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...
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...
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 --
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.
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.
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!
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!
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...
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...
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. :-/
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. :-/
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