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What is considered as aggressive treatment?
I need my energy level up, and fatigue improved within a few month of starting treatment. I need to do IVF to freeze eggs so I can have children in the future. While I do not know what i am infected with yet, and i wanted to know what i can do to improves my energy and reduce fatigue sufficent to undergo IVF. all other symptoms, they can take a bit longer to treated if need. I am 34, my ovaries do not wait.
Does IV antibiotics/antiviral always requires PICC line?
Oh, as for passing on lyme congentially, I'll worry about that later. I've heard of spirochete being found in semen samples, I haven't found anything as to whether spirochete can hides in oocytes(eggs). My IVF specialist doesnt care as long as i get clearance from all other doctors to do IVF procedure.
Does IV antibiotics/antiviral always requires PICC line?
Oh, as for passing on lyme congentially, I'll worry about that later. I've heard of spirochete being found in semen samples, I haven't found anything as to whether spirochete can hides in oocytes(eggs). My IVF specialist doesnt care as long as i get clearance from all other doctors to do IVF procedure.
Best Answer
Good luck with it all Stargazer. Please let us know how you get on.
I just want to say, having a pregnancy and a baby to look after when you are 39 and healthy would be much easier than doing it when you are 34 and sick with lyme disease.
Don't feel that your dream will never come true just because you have to wait a bit longer. Really good things are worth waiting for.
Also, remember that those of us who linger on this forum are the unlucky ones who are still battling. My doctor has told me several times that lots of people get completely cured in only 6 months. Just go for it and be positive.
I just want to say, having a pregnancy and a baby to look after when you are 39 and healthy would be much easier than doing it when you are 34 and sick with lyme disease.
Don't feel that your dream will never come true just because you have to wait a bit longer. Really good things are worth waiting for.
Also, remember that those of us who linger on this forum are the unlucky ones who are still battling. My doctor has told me several times that lots of people get completely cured in only 6 months. Just go for it and be positive.
I'm sorry you are having such a hard time. Lyme affects the emotions, on top of being hard physically.
Given what you say about your situation, adding a baby or a child to your life right now might be more complicated than you want it to be. I would focus on getting well first.
Best wishes to you --
Given what you say about your situation, adding a baby or a child to your life right now might be more complicated than you want it to be. I would focus on getting well first.
Best wishes to you --
"Paralysis by analysis"- :) I know what you mean, I did that with purchase of car, i meant, car is just a car-it is not my health.
The day after I got home from neurologist appointment with lab reports in my hand that shows bands 18 and 41, i waste no time. i made appointment with LLMD, and called another LLMD to start paperwork.
Then I ran into problems- See my PM.
I just feel I don't have luxury of time.
I didn't realize today is mother's day until i wonder why many people are not online. I feel more sad today.
My mom passed away a few years ago, then with this spircohete thing--my dream of having my own children seems to be slashed, and I feel like what do I have to live for in a long run? I feel if i hurry, and do it right off the bat, i may salvage the dream.
The day after I got home from neurologist appointment with lab reports in my hand that shows bands 18 and 41, i waste no time. i made appointment with LLMD, and called another LLMD to start paperwork.
Then I ran into problems- See my PM.
I just feel I don't have luxury of time.
I didn't realize today is mother's day until i wonder why many people are not online. I feel more sad today.
My mom passed away a few years ago, then with this spircohete thing--my dream of having my own children seems to be slashed, and I feel like what do I have to live for in a long run? I feel if i hurry, and do it right off the bat, i may salvage the dream.
The only comment I would make is: don't stress out about getting the exactly perfect LLMD.
I'd send ILADS the 'contact [at] ilads [dot] org' email to request the name(s) of LLMDs near you (I don't know how many names they send in response to each inquiry), and then google/search each of them online, to see what information you can figure out about each one to see which might be a good fit for you -- if you can't pick one over the other others, just close your eyes and point.
Then go for it. I was *very* anxious when I had Lyme (it's a physical, biochemical effect of the infection), and to be faced with such an important decision would have wigged me out. So go ahead and wig out for ten minutes, but then pick up the phone and make the appointment.
There is no perfection in these things, you just have to slog through. If the doc isn't a good fit, you'll figure that out, but there is no way to know for sure beforehand.
I've heard the phrase 'paralysis by analysis', meaning getting so locked up trying to decide something that you decide nothing ... that's very easy to do with Lyme, due to the anxiety caused directly by the infection, so just accept it and plow ahead.
Let us know how you do! Best wishes --
I'd send ILADS the 'contact [at] ilads [dot] org' email to request the name(s) of LLMDs near you (I don't know how many names they send in response to each inquiry), and then google/search each of them online, to see what information you can figure out about each one to see which might be a good fit for you -- if you can't pick one over the other others, just close your eyes and point.
Then go for it. I was *very* anxious when I had Lyme (it's a physical, biochemical effect of the infection), and to be faced with such an important decision would have wigged me out. So go ahead and wig out for ten minutes, but then pick up the phone and make the appointment.
There is no perfection in these things, you just have to slog through. If the doc isn't a good fit, you'll figure that out, but there is no way to know for sure beforehand.
I've heard the phrase 'paralysis by analysis', meaning getting so locked up trying to decide something that you decide nothing ... that's very easy to do with Lyme, due to the anxiety caused directly by the infection, so just accept it and plow ahead.
Let us know how you do! Best wishes --
The 1/3 and 2/3 statistics are what my lyme doc told me, he said this is the rate that comes up for the ILADS doctors when they gather data.
The factors that make the difference are
- how long you have had lyme before starting treatment, and therefore how many of your organs have got cystic forms have hidden in them
- how many and which co-infections you have
- how strong your immune system is genetically
- how well you tolerate the best/really strong drugs you need, i.e. if you can cope with them long enough to finish the job.
Another member of this forum (can't recall who) said according to her doc, the co-infections are the most significant factor in all this.
It is essential to have all the coinfections diagnosed and to be treated for all of them.
Your doxy and plaquenil treatment is far from an agressive treatment in my opinion, and you could certainly have a lot more/powerful/effective drug therapy.
As far as choosing a doctor goes, it's my opinion that any ILADS doctor will be able to give you the best treatment available: I would certainly NOT put myself in the hands of any doctor who did not attend all the ILADS conferences. Once you have a good ILADS doctor I think you can rely on him to choose the best lab for your tests and tell you when it is safe to get pregnant.
ILADS doctors who specialise in children are rare as hens' teeth and I have heard that they often have a waiting list of 5 years. I would explain your position in an email to ILADS and ask if they can suggest a doctor to help you.
My own ILADS doc lives in a different country (I'm in Italy he's in Germany) and I had to fly to see him and stay in his clinic a month to start treatment. It's worth it because he treats children as well as adults and is the best in Europe.
Our appointments are by telephone and I send the blood by international courier to his chosen lab for tests. Most Lyme docs are willing to do this for distant patients as far as I know, so if you indicate to ILADS that you are willing to travel, they may be better able to offer you a doc who doesn't have an impossible waiting list.
As for PICC lines and IV treatment, the Burrascano treatment guidelines say IV is generally necessary to get adequate abx saturation in certain organs, notably the heart and brain. Therefore it is advised if you have particularly severe brain issues or heart complications. I do have very serious heart probs yet my doctor still didn't want me to have IV treatment after the first 3 weeks because my veins were turning to mush! So there are various issues to this and you need to find a doctor you can trust to make the decision for you.
The factors that make the difference are
- how long you have had lyme before starting treatment, and therefore how many of your organs have got cystic forms have hidden in them
- how many and which co-infections you have
- how strong your immune system is genetically
- how well you tolerate the best/really strong drugs you need, i.e. if you can cope with them long enough to finish the job.
Another member of this forum (can't recall who) said according to her doc, the co-infections are the most significant factor in all this.
It is essential to have all the coinfections diagnosed and to be treated for all of them.
Your doxy and plaquenil treatment is far from an agressive treatment in my opinion, and you could certainly have a lot more/powerful/effective drug therapy.
As far as choosing a doctor goes, it's my opinion that any ILADS doctor will be able to give you the best treatment available: I would certainly NOT put myself in the hands of any doctor who did not attend all the ILADS conferences. Once you have a good ILADS doctor I think you can rely on him to choose the best lab for your tests and tell you when it is safe to get pregnant.
ILADS doctors who specialise in children are rare as hens' teeth and I have heard that they often have a waiting list of 5 years. I would explain your position in an email to ILADS and ask if they can suggest a doctor to help you.
My own ILADS doc lives in a different country (I'm in Italy he's in Germany) and I had to fly to see him and stay in his clinic a month to start treatment. It's worth it because he treats children as well as adults and is the best in Europe.
Our appointments are by telephone and I send the blood by international courier to his chosen lab for tests. Most Lyme docs are willing to do this for distant patients as far as I know, so if you indicate to ILADS that you are willing to travel, they may be better able to offer you a doc who doesn't have an impossible waiting list.
As for PICC lines and IV treatment, the Burrascano treatment guidelines say IV is generally necessary to get adequate abx saturation in certain organs, notably the heart and brain. Therefore it is advised if you have particularly severe brain issues or heart complications. I do have very serious heart probs yet my doctor still didn't want me to have IV treatment after the first 3 weeks because my veins were turning to mush! So there are various issues to this and you need to find a doctor you can trust to make the decision for you.
A good LLMD will have an answer for you on IV treatment. It can't hurt to ask. Apparently every patient has their own disease presentation and progression, with coinfections and other side effects, such as yeast, mold, heavy metals build up, viral loads, et.al. And they can't explain why some drugs work better in some people than others. It probably has something to do with an individual's immune system and the particular genetic strain of the bugs. Some cases of Bartonella are really easy to treat, others are stubborn and take a long time. A good LLMD will adjust your treatment as you go, so it's almost impossible to say in advance what your treatment protocol will be. Mine has changed with every appointment.
Regarding Rocephin and the gallbladder, my doc insists on using Ursodial (actigal) to help the gallbladder while on rocephin. It seems it reduces the risk of sludge in the gb.
Regarding Rocephin and the gallbladder, my doc insists on using Ursodial (actigal) to help the gallbladder while on rocephin. It seems it reduces the risk of sludge in the gb.
Since I am already on doxycycline for 7 months (End of July 2011 through end of Jan 2012), incidentially for different reason. Then I restarted at end of March 2012, and am still on it now. Plus I am on Plaquenil also incidentially for different reason.
So would it make sense for me just to start ABX injections or IV when start formal treatment when I first see LLMD?
Rocepin, I've heard of others got their gallbladder removed because of it. Yikes. We'll see.
So would it make sense for me just to start ABX injections or IV when start formal treatment when I first see LLMD?
Rocepin, I've heard of others got their gallbladder removed because of it. Yikes. We'll see.
I asked to be more aggressive early in my treatment, and I was put on Bicillin-LA (deep IM) shots about 6 weeks into treatment. Most of my doc's late stage Lyme patients start on IV after 3 months of oral abx, especially if there are coinfections and other conditions that need to be brought under control first. Rocephin was not an attractive choice for me early on as I already had a lot of gallbladder pain. Rocephin can be hard on a gallbladder.
A my last appointment, he said if I plateaued at the next appt, he would start a PICC line.
I am actually fine with the shots, as we have figured out that 15 minutes with a freezer brick on my rear numbs it well, and I hardly feel it. After the shot, I put a hot pack on it for 30-45 minutes. That prevents the soreness. Without the cold and hot packs, the shots would be intolerable.
I know how you feel about IVF. I did it at 35 and 36. There really isn't a significant difference in your fertility between 34 and 35. If I could be so bold as to offer a suggestion, if you could wait a year, you would be much less likely to pass on an infection and to avoid the heartbreak of a child with Lyme. I have read that some children infected very early in the womb just don't make antibodies to the spirochetes because they don't recognize them as foreign. The presence of the spirochetes preceded the development of the immune system. As a result, they test completely negative on antibody tests. You have to wait until you see developmental delays and behavioral problems before you can determine if the child has Lyme (although, there is a cord blood test at IGeneX and the new culture test at ALSI that would be helpful). There are extremely few Lyme docs who know how to treat young children.
You would also be much healthier a year from now, which is good from every aspect of the process.
I know how incredibly difficult it is to wait. I had to wait until I was 40 to finally become a mom. Those years of waiting were very difficult for me. But now, it is in the past, and I am so grateful I didn't give Lyme to a child. (Which is theoretical for me... I got Lyme at 39 and we adopted when I was 40.)
A my last appointment, he said if I plateaued at the next appt, he would start a PICC line.
I am actually fine with the shots, as we have figured out that 15 minutes with a freezer brick on my rear numbs it well, and I hardly feel it. After the shot, I put a hot pack on it for 30-45 minutes. That prevents the soreness. Without the cold and hot packs, the shots would be intolerable.
I know how you feel about IVF. I did it at 35 and 36. There really isn't a significant difference in your fertility between 34 and 35. If I could be so bold as to offer a suggestion, if you could wait a year, you would be much less likely to pass on an infection and to avoid the heartbreak of a child with Lyme. I have read that some children infected very early in the womb just don't make antibodies to the spirochetes because they don't recognize them as foreign. The presence of the spirochetes preceded the development of the immune system. As a result, they test completely negative on antibody tests. You have to wait until you see developmental delays and behavioral problems before you can determine if the child has Lyme (although, there is a cord blood test at IGeneX and the new culture test at ALSI that would be helpful). There are extremely few Lyme docs who know how to treat young children.
You would also be much healthier a year from now, which is good from every aspect of the process.
I know how incredibly difficult it is to wait. I had to wait until I was 40 to finally become a mom. Those years of waiting were very difficult for me. But now, it is in the past, and I am so grateful I didn't give Lyme to a child. (Which is theoretical for me... I got Lyme at 39 and we adopted when I was 40.)
About which labs, many LLMDs seem to use IGeneX for the Lyme tests, as well as other labs like Quest for other possible diseases, based on your symptoms and history.
I don't think it would work to call up a doc's office and say "I want to see the doctor, but only after I know which labs the doc uses." There are lots of labs, and depending on which infections seem possible, the doc will decide which labs get which blood samples. Different labs have different specialities, and a Lyme infection very often is accompanied by other infections that IGeneX doesn't normally test for.
And besides, the receptionist isn't likely to either know or have the doc's permission to tell some stranger on the phone what labs the doc uses.
I don't think it would work to call up a doc's office and say "I want to see the doctor, but only after I know which labs the doc uses." There are lots of labs, and depending on which infections seem possible, the doc will decide which labs get which blood samples. Different labs have different specialities, and a Lyme infection very often is accompanied by other infections that IGeneX doesn't normally test for.
And besides, the receptionist isn't likely to either know or have the doc's permission to tell some stranger on the phone what labs the doc uses.
I already drop an email to ILADS.
Where do you get that statistics about 1/3 cannot get rid of, and 2/3 do. What did the 2/3 group did the different? is it treatment approach or numerous of co-infection they had, or the kind of co-infection they have? Etc..What factors that made the difference?
Do all ILADS doc agreed on what lab could the test reliably? I wanted to make sure I choose the right ILADS, LLMD/LLDO doctor.
Where do you get that statistics about 1/3 cannot get rid of, and 2/3 do. What did the 2/3 group did the different? is it treatment approach or numerous of co-infection they had, or the kind of co-infection they have? Etc..What factors that made the difference?
Do all ILADS doc agreed on what lab could the test reliably? I wanted to make sure I choose the right ILADS, LLMD/LLDO doctor.
The DVD doesn't have subtitles but I don't know about the closed captions - I would drop an email to ILADS to ask them. They also do CD roms with everything in PDF format which might be an option.
I've just been looking at the slides BTW and it says in 2 cases of IVF, the babies were born infected. One was eggs implanted in a healthy surrogate mother from a lyme-diseased donor; the other was a woman who had her own eggs implanted 3 times and all 3 kids had lyme.
http://www.ilads.org/media/slides/slides_jones.php
If you can get completely cured of Lyme you would have no spirochetes left, so you could have the healthy baby and breastfeed etc. Apparently about one third of people cannot get rid of the spirochetes, but two thirds do.
The billion dillar questions is knowing if you really have got rid of the spirochetes or not, because the antibodies can remain for a really long time after the disease has been cured. So you would need a very reliable test to confirm you are really clear. You'd need an ILADS doc to choose which lab could do the test reliably.
I've just been looking at the slides BTW and it says in 2 cases of IVF, the babies were born infected. One was eggs implanted in a healthy surrogate mother from a lyme-diseased donor; the other was a woman who had her own eggs implanted 3 times and all 3 kids had lyme.
http://www.ilads.org/media/slides/slides_jones.php
If you can get completely cured of Lyme you would have no spirochetes left, so you could have the healthy baby and breastfeed etc. Apparently about one third of people cannot get rid of the spirochetes, but two thirds do.
The billion dillar questions is knowing if you really have got rid of the spirochetes or not, because the antibodies can remain for a really long time after the disease has been cured. So you would need a very reliable test to confirm you are really clear. You'd need an ILADS doc to choose which lab could do the test reliably.
My friend with Lyme had her son and her son has Lyme but is perfect in every other way. As Jackie said, not all LLMD's use IV treatment, I am on orals. Your LLMD should help you decide about your IVF. Good luck.
oops, i am on my ipad, accidentily swipe on Choosen as Best Answer.
Anyway, is the video subtitled or closed caption? I am deaf.
Are you say if i eradicate this, then i could have baby free of lyme, and breastfeeding her/him? Or spirochete will be there permanently?
Anyway, is the video subtitled or closed caption? I am deaf.
Are you say if i eradicate this, then i could have baby free of lyme, and breastfeeding her/him? Or spirochete will be there permanently?
Not all Lyme docs use IV treatment. My LLMD, who is very well known in the field, treated me with oral antibiotics only, but different docs do it different ways, and there may be a difference in treatment depending on how worn down you immune system is. See what the LLMD says, and tell him/her about your IVF plans. That way everyone is on the same page. Best wishes!
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My son was born with lyme disease. Lyme kids are autistic. The connection has been very well proven now. They can be cured with antibiotics (my doc has told me many times the success rate with kids is close to 100 percent) but it is awul having an ill child who keeps needing injections and blood tests, and you have to put in so much extra work to help them develop into neurotypical children, and later to cope with symptoms like brainfog while they are trying to study, for example.
If I could wind the clock back and know all I know now, I would try to find a very good lyme doc who treats children before embraking on a pregnancy. The best in the world is Charles Ray Jones. He did a presentation at the last ILADS conference on gestational Lyme.
here
http://www.ilads.org/media/videos/videos_jones.php
This is the intro, if I were you I would order the video.
I have also read that they have enabled lymie women to have healthy babies by giving them a certain antibiotic throughout the pregnancy. I cannot remember the name of it but it may be mentioned in this vid. So that is an option worth investigating.
I am sorry if I have said a lot of negative things, but I think it is better to have all the info and make an informed decision. I don't want to discourage you from having a baby, definitely do it, but I hope with the right planning you can have a healthy one.
Finally, just in case nobody remembers to tell you this in future, you must NOT breastfeed. There are spirochetes in your milk which will infect the baby.