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Lyme disease and pregnancy

(28 Posts)
missfitz23 Sat 27-Apr-13 04:44:25

I have a beautiful 5 month baby boy and i unluckily got Lyme disease at the early part of my pregnancy and due to silly doctors didn't receive this diagnosis untill week 30 of my pregnancy .... At this point I receives amoxicillin for the rest o my pregnancy (10 weeks) I'm worried though about the time in between it was untreated

Some say it can spread to baby but he's currently healthy and I feel like I'm always worrying that I might have given it to him sad

Anyone know or have any experience I need reassurance and advice

missfitz23 Thu 23-May-13 23:16:21

Thank you

Jellykat Tue 21-May-13 22:14:09

I really didn't mean to worry you further.. You must remember that the reason her case is so extreme, was that it wasn't taken seriously by the NHS, so it was left to take hold for many years.

I do think a test would be a good idea, at least if its negative your mind will be put at rest, if it isn't (which is unlikely) the earlier its treated, the better the chances of getting rid of it.

I hope it all turns out fine for you both x

missfitz23 Tue 21-May-13 12:46:29

That's heat breaking ! I'm really worried about not only me but my son too! I'm going to get him tested ASAP and begin treatment if positive I don't want him to end up like that

Jellykat Tue 21-May-13 10:06:45

Her worst symptoms include absolutely chronic fatigue, she does have a wheelchair but can survive some days by using crutches from mid day onwards and sleeping in the afternoon, she also has a car specifically geared towards disabled drivers.
(The family say that most of the young people her age (22) that attend Breakspear, are in wheelchairs, and a few are bed ridden a lot of the time)

She has developed Hypermobility in all of her joints, and rheumatoid arthritis appears to be creeping in. She also recently had a spat of passing out which was due to low levels of oxygen in her bloodstream.

Its heartbreaking, she used to love horse riding and surfing when younger, but can no longer even contemplate doing them.
The family own a huge building with a proportion let out as holiday lets. She desperately wants to contribute to the running of the place, but on changeover days she has to drink at least a litre of coke cola in order to do 2 hours cleaning! It then takes her 2 days to recover.

With the amount of antibiotics she takes and for so long, she watches her diet like a hawk (apart from the necessary cola) raw fresh foods, no yeast, wheat, or sugar, tea or coffee..

Its a huge huge battle for the family, and Breakspear cannot predict how it will end, i have to say the leading (American) expert battles against the NHS on a regular basis.. anyone who has this disease and is not diagnosed in the early stages, and cannot afford private fees is pretty much buggered from what i gather.

Sorry to sound like a doom monger, but i've watched this family fight for years, and their DDs health and therefore quality of life disintegrate, while the NHS system has fobbed them off .. and i'm absolutely gobsmacked.

missfitz23 Mon 20-May-13 23:37:13

What are her symptoms ?? Does Breakspear predict that she will recover in time ?

Jellykat Mon 20-May-13 23:08:43

(Apologies i should've said DD not DS).. It varies, because it was undiagnosed for so long, it really has taken hold i'm afraid, so she's been on Antibiotics for 3 years now.. it seems one huge course of antibios can result in a negative result, and then it creeps back in within 4 - 6 weeks, which means changing the antibios and starting again.
My friend said its like the disease tricks them and hides, and they have to hit it with a different drug to trick it in turn... but i must stress her DD has it chronically- its been 9 years ... however, they are now saving to undergo a different form of treatment in America, with one of the leading experts in connection with Breakspear.

I really must stress that my friends DD was undiagnosed for years during her teens, the NHS said she had ME, so she really is an extreme case.

missfitz23 Mon 20-May-13 21:59:38

What treatment is he on?

X

Jellykat Mon 20-May-13 21:07:12

I don't know about transferring, but my best friends ds has chronic Lymes, undiagnosed and poo pooed by the NHS system for 6 years, it wasn't realised until she went to Breakspear and her bloods were sent to America (she has a rare form).. I'd say judging by her experiences with the NHS system take what they say with a pinch of salt, Breakspear are the experts, what do they say?

missfitz23 Mon 20-May-13 20:40:33

:/

missfitz23 Fri 17-May-13 22:49:00

The NHS website have put up about possible risk of transmission x

Lovemynailstoday Wed 15-May-13 17:36:53

Sorry you are still worrying. Who told you it can transfer? See above--I was reassured it would not. Can you have you baby tested? You need some clear answers from someone medical it seems.

missfitz23 Wed 15-May-13 16:12:37

Thanks for everyone's help ! I still worry as I hear constantly it can transfer to baby sad ... Anyone else that has experience or ideas please reply smile thank you xxx

missfitz23 Tue 07-May-13 01:08:58

..

looseleaf Mon 29-Apr-13 13:07:58

MS. I am very grateful to her. But it was stressful not knowing who to believe, as you say NHS have different views on adequate treatment and thought she over treated. Dd had mostly amoxicillin but also Metronizadole.
All St Mary's doc did was reassure me was safe to stop treatment. He thought if Lyme was in her central nervous system she'd need IV antibiotics but was confident was ok to stop.

missfitz23 Sun 28-Apr-13 23:13:50

Ps: what did the at Mary's padding on dr do or say/ prescribe I need to get back into the NHS but refuse to be told the usual crap about lyme and how I don't need anymore treatment etc

missfitz23 Sun 28-Apr-13 23:12:50

Who did you see at Breakspear?? Give initials of not allowed to give names on sites. What antibiotic was used? 6 weeks is quite early after which is good for your lo. I still have symptoms now sad

looseleaf Sun 28-Apr-13 22:44:18

Just like us- travelled there regularly ! Though I ended up asking GP to refer us back into the NHS and DD saw someone at St Mary's Paddington I think it was.
We missed the tick too - was on her scalp as I noticed the bump where it had been and huge circular rash round her head. Do PM me if want to chat at more length but I sympathise so much. And can lend you two books on Healing Lyme if ever you're near us ( west Kensington).

Dd was treated about 6 weeks after her bite

missfitz23 Sun 28-Apr-13 22:30:59

At a private clinic in Hemel Hempstead where did your lo get treatment ??

Nope no idea I had a tick wish I did so that I don't have the gloom hanging over me or fear that I have passed it to my gorgeous boy x

How long was it before your lo got treated after the bite

looseleaf Sun 28-Apr-13 18:59:19

I'm shocked you got it in Richmond! Though did hear it is possible. Did you realise you had a tick? And where are you being treated? We live in west London.
Dd had 7 months' treatment and it was stressful as I never know whether that length of treatment of treatment really necessary. She got I'll again when we tried to stop treatment initially.

missfitz23 Sat 27-Apr-13 23:12:56

Bless her! How long did her treatment last! I'm still in treatment ! Pretty hard on the body!

I got it in Richmond park! Outskirts of London

looseleaf Sat 27-Apr-13 22:32:48

Out of interest where did you get it? Dd got it in Scotland (west coast)

looseleaf Sat 27-Apr-13 22:31:17

Missfitz you poor thing- Lyme was such a worry with us as Dd got it aged 3 and like you a delay before treatment.
So glad you've been reassured about your baby not getting it. What a relief as I wasn't sure.
And also good that you had prolonged treatment as initially DD was only given 10 days. she ended up having many months of amoxicillin and other antibiotics too which i hated but it hadn't gone and there was worry the Lyme had gone into her central nervous system but to my utter joy she's better (and 6 now)

Lovemynailstoday Sat 27-Apr-13 11:56:42

If I remember right, I was treated within a couple of weeks. It probably helped that I was living in a very high risk area for Lyme disease--lots of deer leaping around, so docs were on the look out for it.

missfitz23 Sat 27-Apr-13 11:04:48

Wow good news for you !! Did you get antibiotics as soon as you are bitten I wish that was the case for me

Lovemynailstoday Sat 27-Apr-13 08:48:03

Yes, it was trated early but I had a high fever and flu like symptoms for a while. It sounds as if your baby is healthy. Knowing the diagnosis early gave me a horrible dilema as far as continuing the pregnancy.

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