It definitely can. I believe the CDC even mentions it:
http://www.cdc.gov/lyme/transmission/
www.cdc.gov/lyme/resources/toolkit/factsheets/10_508_Lyme%20disease_PregnantWoman_FACTSheet.pdf
Lyme community says we all have it
- Thread starter fibrodude84
- Start date
http://www.cdc.gov/lyme/transmission/
www.cdc.gov/lyme/resources/toolkit/factsheets/10_508_Lyme%20disease_PregnantWoman_FACTSheet.pdf
Sorry, I didn't see that bit? They say it can result in stillbirth, not that it always does.
JAH
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- Northern California
Has anyone has this Lyme test done, in Milford CT. Tests for Lyme DNA ?
http://www.dnalymetest.com/
Mine was negative, which for my doc does not mean negative, just that the Lyme is "hiding" in my nervous system. Impossible for my doc to consider not having Lyme as a possibility. Wonder if a negative from infectolab would changer her mind...
JAH
http://www.dnalymetest.com/
Mine was negative, which for my doc does not mean negative, just that the Lyme is "hiding" in my nervous system. Impossible for my doc to consider not having Lyme as a possibility. Wonder if a negative from infectolab would changer her mind...
JAH
I have a negative from infectolab, but my doc still thinks I may have it...
The in utero thing is a worry. There is a lot of info on the net about children and whole families of children infected in utero - some born with damage, others developing Lyme like symptoms later in life. I have 4 children and IF I have Lyme would have probably picked it up many years ago, possible before I had any of them. One of my children has dyslexia/dyspraxia, one has an M.E like illness, one seems fine, one gets tired very easily and poorish stamina.
But then my birth mother also has a DX of M.E as does a female cousin, perhaps we are genetically susceptible to immune problems and then pick up bacteria/viruses that don't clear well and leads to M.E illness?
filfla4
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- 236
Ok, so here's my 2 cents worth:
I've had "ME" for 21 years. I have have been a patient of Kdm for just coming up to 4yrs. On my first visit he tested me for Lyme and the result was negative. I'm afraid I can't remember what test he used.
I started his treatment protocol which, among other things included pulsed abx and GcMAF (immunomodulator).
Unfortunately, I then went through a period of about a year of very high levels of stress: (i) son with a brain tumor; (ii) husband with a subdural hematoma; (iii) illness of elderly parents (iv) death in the family.
When I was in a position to resume my treatment with Kdm, I went back to Brussels to be re-tested. This time I tested positive for Lyme by PCR, confirmed by DNA sequencing. Kdm explain that (i) his treatment had kick-started my immune system and got the sprochetes out of hiding; (ii) the high levels of stress would have contributed to the sprochete activity; and (iii) the testing he was using was more sensitive.
Due to my long and complicated medical history, my local ID agreed to give me just 4wks of IV Ceftriaxone (2mg daily). That's when I really knew that I was on the right track as in the 4th week I started herxing very badly. Unfortunately he wouldn't treat further.
Kdm then put me on 8 months of oral abx (doxy, azithro & plaquenil), while continuing and tweaking the rest of his protocol. It was tough-going but I survived.
He then told me to remain abx-free for 4 months, after which he tested me by LTT-Elispot which came back negative! He explained that this did not mean that I had cleared the Lyme. He switched me to herbal abx, which I found much harder to tolerate than any other treatment I had had.
Now I am in Brussels again. My two sons are positive for Lyme and are being treated, as am I. I am having 4 wks of IV azithro; 2 wks oral azithro; 6 wks of IV rocephine. He is now adding Rifampicin for Bartonella. And the story continues......I know I'm on the right track. My CD57 has gone from 29 when I first saw Kdm to 87 (on a range of 60-360). That's certainly an improvement.
After 21 years of being diagnosed with ME, I have no doubt that Lyme has been an important factor. The question is that if I manage to clear the infection, will my immune dysfunction and inflammation levels also be cured? I think time will tell but after struggling for so long, I am glad to have a game-plan.
I've had "ME" for 21 years. I have have been a patient of Kdm for just coming up to 4yrs. On my first visit he tested me for Lyme and the result was negative. I'm afraid I can't remember what test he used.
I started his treatment protocol which, among other things included pulsed abx and GcMAF (immunomodulator).
Unfortunately, I then went through a period of about a year of very high levels of stress: (i) son with a brain tumor; (ii) husband with a subdural hematoma; (iii) illness of elderly parents (iv) death in the family.
When I was in a position to resume my treatment with Kdm, I went back to Brussels to be re-tested. This time I tested positive for Lyme by PCR, confirmed by DNA sequencing. Kdm explain that (i) his treatment had kick-started my immune system and got the sprochetes out of hiding; (ii) the high levels of stress would have contributed to the sprochete activity; and (iii) the testing he was using was more sensitive.
Due to my long and complicated medical history, my local ID agreed to give me just 4wks of IV Ceftriaxone (2mg daily). That's when I really knew that I was on the right track as in the 4th week I started herxing very badly. Unfortunately he wouldn't treat further.
Kdm then put me on 8 months of oral abx (doxy, azithro & plaquenil), while continuing and tweaking the rest of his protocol. It was tough-going but I survived.
He then told me to remain abx-free for 4 months, after which he tested me by LTT-Elispot which came back negative! He explained that this did not mean that I had cleared the Lyme. He switched me to herbal abx, which I found much harder to tolerate than any other treatment I had had.
Now I am in Brussels again. My two sons are positive for Lyme and are being treated, as am I. I am having 4 wks of IV azithro; 2 wks oral azithro; 6 wks of IV rocephine. He is now adding Rifampicin for Bartonella. And the story continues......I know I'm on the right track. My CD57 has gone from 29 when I first saw Kdm to 87 (on a range of 60-360). That's certainly an improvement.
After 21 years of being diagnosed with ME, I have no doubt that Lyme has been an important factor. The question is that if I manage to clear the infection, will my immune dysfunction and inflammation levels also be cured? I think time will tell but after struggling for so long, I am glad to have a game-plan.
JAH
Senior Member
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- Northern California
After all of this, do you feel any better?
filfla4
Senior Member
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I am definitely better than when I started out with Kdm 4yrs ago. However I would not say I am cured. I know that from past experience, when I stopped the abx I felt very much better, only to start to decline again a few months later. I keep hoping that each time I will last for longer without the medication.
It also spirals, if you know what I mean. When I am feeling better, I look after myself better, eat better, sleep better and can cope with life in general better. And therefore my overall medical condition improves even more. The reverse has been true in the bad patches, particularly those caused by external stress.
It also spirals, if you know what I mean. When I am feeling better, I look after myself better, eat better, sleep better and can cope with life in general better. And therefore my overall medical condition improves even more. The reverse has been true in the bad patches, particularly those caused by external stress.
Hanna
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@filfla4 have you noticed when your "decline" started? Was it still under a herbal protocol for Lyme ? If yes could you describe it if you please?
I tend to "visit" french lyme forum for information, and see that generally, people who were treated with long time ABX (along with herbals most of the time) continue to run an herbal routine to keep the benefits of previous treatment.
(GSE, colloidal silver, teasel root, samento etc).
I tend to "visit" french lyme forum for information, and see that generally, people who were treated with long time ABX (along with herbals most of the time) continue to run an herbal routine to keep the benefits of previous treatment.
(GSE, colloidal silver, teasel root, samento etc).
filfla4
Senior Member
- Messages
- 236
@Hanna It is a bit difficult for me to track my progress and subsequent decline in detail because I have been on a roller-coaster of stress for the last 3 yrs which wreaks havoc with my Lyme progress. I would say that after the first round of IV's (4wks) it probably took about 3/4 months. And again, after the 8 months of orals, similar. Having stopped the orals in May, last summer I was swimming distances in the sea, which is something I hadn't done for years! By the time I started the herbals in December, I was feeling pretty crappy. I think the key is to detox, detox, detox and to try to keep on as much of an even keel as possible. The last few years have been very difficult for me for totally extraneous reasons. I hope this time round I will be able to manage myself better. Yes, when this treatment is over, I plan to start LDN and also very very slowly the herbal protocol (samento/banderol).
Hanna
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- Jerusalem, Israel
@filfla4 Thanks for your answer. Treating Lyme is indeed a very heavy task. As you say, detox is critical, and scheduling all the meds, the herbals etc are quite like a full-time job for us...
Hope that now, this round will be the right one for you and that you'll be able to regain the previous benefits and much more.
On top of the regular ABX and herbals (I am 3 months in treatment), I have begun LDN a few days ago - 0.25 mg.
So far, nothing dramatic, but definitive improvements (sleep quality, nocturia, OI, brain inflammation), but this is the first time in 16 years of my so-called CFS, that there is a shift in the right direction.
Hope that now, this round will be the right one for you and that you'll be able to regain the previous benefits and much more.
On top of the regular ABX and herbals (I am 3 months in treatment), I have begun LDN a few days ago - 0.25 mg.
So far, nothing dramatic, but definitive improvements (sleep quality, nocturia, OI, brain inflammation), but this is the first time in 16 years of my so-called CFS, that there is a shift in the right direction.
Daffodil
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does anyone know what happens if a person without lyme takes samento? do they feel sick too?
TigerLilea
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Not true! I have permanent Lactose Intolerance from being on Cipro for a week.
@TigerLilea
I did qualify that by saying that people with gut problems should not be trying the antibx test.
I did qualify that by saying that people with gut problems should not be trying the antibx test.
TigerLilea
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My point is that I did NOT have any gut problems before starting on Cipro. You claim that the gut should be able to recover from one week's course of antibiotics. In my case that did not happen. Almost 15 years later I still have Lactose Intolerance.
fibrodude84
Senior Member
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- 191
One of my lyme tests came back positive but the more sensitive one is negative so dr isn't worried. Why positive at all? I'm afraid I have chronic lyme and don't know.
Daffodil
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In 2007, the doctor I was seeing at the time was stumped as to what was wrong with me. I was very sick but every test was negative. To rule out Lyme, he had me take a few weeks of Doxycycline. I took it, and did not have any reaction at all - no herx, no nothing. So how is it that now, 7 years later, I am diagnosed with Lyme disease via the LTT ELISPOT test?
helperofearth123
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- 202
I've started treatment for suspected chronic lyme after 3 and a half years of disability with a CFS diagnosis, which started a few months after being treated for lyme disease, by an NHS doctor. I had a western blot when it started which came back equivocal (maybe yes, maybe no) which combined with the symptoms and a suspicious bite which I picked up hiking in the woods in America, which the doctor never saw, but from my description and it being in a lyme area (Virginia) it lead him to a lyme diagnosis. I was put on 2 or maybe 3 weeks of doxy, I can't remember. It's still possible it was never lyme though, but it seems like it probably was.
Also relevant, I had great improvement after 2 weeks of IV antibiotics (about 5 different kinds all at once) with a perferated appendix a couple of years ago, but relapsed about 2 months later. A POTS doctor in london initially said I improved then due to IV fluids, not the antibiotics, as the fluids would have helped with the POTS, but then they did a load of autonomic testing on me and found I only had mild autonomic disfunction and that POTS was only a mild part of what is going on. So maybe it was the antibiotics after all?
This has led me to seek a lyme diagnosis so I could give antibiotics another go again. It seems chronic lyme (if it exists) gets much harder to treat if you wait longer than a few years, so I thought, it's now or never, there are no other treatment options, so I'll give it a shot, if I can find a doctor who will treat me for it.
I also managed to get an Elisa test done recently from my GP recently but it came back negative. I was on a course of doxy for chronic sinusitus (which I still have) and got a bit better straight away, but then got worse and worse, causing me to stop taking them as I felt so aweful, but then I just got even worse still after I stopped taking them and could barely stand up. I felt I could die I was so weak. I started to think that this is what it felt like when I had lyme diseaes, so I thought, maybe I still do?
I started buying doxy myself online and that seemed to stabilize things a bit, but it was still pretty aweful (housebound, struggleing on the stairs, sometimes not even enough energy to watch TV, which is what I usually do all day now due to the chronic exhaustion). I was in a pretty desperate state, I couldn't come off the doxy as I feared I would plummet into that state I went into when I first came off it, where I felt so weak I could die, but if I stayed on it I would feel really rough too, quite a lot worse than my usual CFS state. So it seemed like the doxy had 'stirred things up', so I thought, I can't go on without any treatment, and I can't keep buying doxy myself and taking without being under the care of a physician, so I went to a clinic known to treat lyme in the UK and told the doctor my story. I didn't want to do any tests as I know how unreliable they are, and even if they came back negative I would want treating for lyme anyway. She said I do still have lyme disease and prescribed Ceftin, Artesunate and nattokinase as well as an IV antibiotic which I had to decline due to the cost.
So now I am 1 month into the oral antibiotics (plus the 2 months of doxy I had before). The first week of this new antibiotic combination I felt a bit better, just like how I felt a bit better on the first week of doxy, but just like the doxy I got worse and worse in week 2-3. It's still pretty bad but a slightly better today, better enough to be able to just about write this post.
I've no idea if I actually have lyme or not, but I see no other options so I'm giving it a shot. The professor of infectious diseases who diagnosed me with CFS explicitly said I do not have lyme anymore. But there are some some findings in studies suggesting it could be, albeit quite weak findings. I consider it a long shot, but oral antibiotics don't have too serious a side effects so I'm going to stick with it for 6 months and then see how things are going.
Also relevant, I had great improvement after 2 weeks of IV antibiotics (about 5 different kinds all at once) with a perferated appendix a couple of years ago, but relapsed about 2 months later. A POTS doctor in london initially said I improved then due to IV fluids, not the antibiotics, as the fluids would have helped with the POTS, but then they did a load of autonomic testing on me and found I only had mild autonomic disfunction and that POTS was only a mild part of what is going on. So maybe it was the antibiotics after all?
This has led me to seek a lyme diagnosis so I could give antibiotics another go again. It seems chronic lyme (if it exists) gets much harder to treat if you wait longer than a few years, so I thought, it's now or never, there are no other treatment options, so I'll give it a shot, if I can find a doctor who will treat me for it.
I also managed to get an Elisa test done recently from my GP recently but it came back negative. I was on a course of doxy for chronic sinusitus (which I still have) and got a bit better straight away, but then got worse and worse, causing me to stop taking them as I felt so aweful, but then I just got even worse still after I stopped taking them and could barely stand up. I felt I could die I was so weak. I started to think that this is what it felt like when I had lyme diseaes, so I thought, maybe I still do?
I started buying doxy myself online and that seemed to stabilize things a bit, but it was still pretty aweful (housebound, struggleing on the stairs, sometimes not even enough energy to watch TV, which is what I usually do all day now due to the chronic exhaustion). I was in a pretty desperate state, I couldn't come off the doxy as I feared I would plummet into that state I went into when I first came off it, where I felt so weak I could die, but if I stayed on it I would feel really rough too, quite a lot worse than my usual CFS state. So it seemed like the doxy had 'stirred things up', so I thought, I can't go on without any treatment, and I can't keep buying doxy myself and taking without being under the care of a physician, so I went to a clinic known to treat lyme in the UK and told the doctor my story. I didn't want to do any tests as I know how unreliable they are, and even if they came back negative I would want treating for lyme anyway. She said I do still have lyme disease and prescribed Ceftin, Artesunate and nattokinase as well as an IV antibiotic which I had to decline due to the cost.
So now I am 1 month into the oral antibiotics (plus the 2 months of doxy I had before). The first week of this new antibiotic combination I felt a bit better, just like how I felt a bit better on the first week of doxy, but just like the doxy I got worse and worse in week 2-3. It's still pretty bad but a slightly better today, better enough to be able to just about write this post.
I've no idea if I actually have lyme or not, but I see no other options so I'm giving it a shot. The professor of infectious diseases who diagnosed me with CFS explicitly said I do not have lyme anymore. But there are some some findings in studies suggesting it could be, albeit quite weak findings. I consider it a long shot, but oral antibiotics don't have too serious a side effects so I'm going to stick with it for 6 months and then see how things are going.
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@Matthew Jones - I have sent you a private message.