Lyme, antibitotics and a general update

So thought I would just post a little update. On 28th Feb I started a high dose of doxycycline after seeing the UK Lyme guy and discussing my Igenex blood test results. Granted there is SO much controversy regarding Lyme and polar opposites clashing in the big debate. I decided to put my trust in the Lyme specialist I saw as he was so pragmatic…he looked at both sides of the argument, and feels the truth lies somewhere in the middle…it is frustrating and difficult treating something so controversial… but being a scientist myself, I can only consider the evidence (critically) and go with what I feel is right…we only have to look at the medical community’s view of HIV in the early 1980s to see that they misunderstand diseases and make mistakes…anyway Dr O had 100% faith in Igenex labs (he has trained in the states etc so has experience of them). I don’t fully understand why they are not trusted…I know they were investigated by The FDA but they were cleared…it does seem they have high rate of positive results but mine were not only Igenex but CDC positive…I can’t imagine, in my opinion, that a private lab would be allowed to operate for well over a decade if they were falsifying results…anyway… The Lyme doc has collaborated with my GP and they have agreed on prolonged antibioitc treatment for the next 6 months with review after 3. I expressed my concern over being on antibiotics for so long but my GP said he has no concerns whatsoever about the 300 mg dose in someone of my age, stating that people with cystic fibrosis are on massive antibiotic doses, for their entire lives, with minimal effects.

It’s been nearly 6 weeks on the antibiotics and things have definitely shifted in a positive direction. I have just had 11 straight days of better times and done A LOT more i.e. lots of walks, out for meals, time with family, exercise etc…it’s been so nice and though I have still felt a little woozy and off balance it hasn’t been anything like the previous 9 months where I have spent A LOT of time incapacitated and house bound…I am seeing Dr S a week today and am going to discuss the Lyme diagnosis with him…to me it adds up and considering the risks vs. benefits of trialling the antibiotoics it seems a sensible path to take…time will tell.

I know there are so many people out there with fairly extreme ideas about Lyme…some recent groups I have been reading on have shown that…but I try to listen to every opinion…I think that right now, no one has a true handle on Lyme disease…I think it’ll take years and a vast amount of research before it is fully understood…having read up recently on the molecular biology of the Lyme bacteria…it is truely a complex pathogen…anyway sorry for the long post…here’s hoping everyone is doing well. L xx

Wonderful news Lizzie!!! So would you say that it took about a month before you saw definite improvment? What % better are you feeling now? I forget but are you currently on any MAV meds?

I wonder why your dr. decided on 6 months-the 2 lyme drs. i saw said basically continue treatment until your progress plateaus and there is no more improvement- so they never put a time line on it. How long did your dr. say until you were supposed to see improvement? Was it obvious once you started improving that it was definitely the antibiotic and not something else or just random?

Also are you taking probiotics now too- it is a good idea- and eat yogurt if you can.

Great news Lizzie1 :smiley:

Lizzie did you have a hard time with walking/balance and if so how much improvement have you seen with that?

That’s great news Lizzie. I knew you would see an improvement sooner or later. Do keep us posted on what Dr S says about the Lyme issue. Hopefully things will keep improving now xx

Hey! They have started me on 6 months initially…then they’ll see how I am getting on. I have alwways had massive ups and downs with this condition…some days I would say I’m 70% of normal…others I can be 50%…it’s always fluctuated a lot but recently the good times have been MUCH better…it’s hard to say at this point if it is just a random good spell or whether the antibiotics are actually working but I’m hoping they are…were you diagnosed with Lyme to??? I am the last person who is going to become a lyme extremist telling everyone to get tested but it can’t be conincidence that so many ‘dizzies’ are coming back positive for Lyme…I have found out you can order tests direct with Igenex from the UK if you get your GP to authorise the tests (which I doubt they’d refuse if you are funding them privately) and it costs about 300 USD so well worth it IMO to know one way or another…I just wonder if there is some connection…I am really interested to discuss it with Dr S and get his views of Lyme…I have always (for 9 months) had the feeling of the ground rocking/moving underneath me…but a lot of my dizziness come from my vision, objects shift, I’m v v light sensitive, I see visual snow, flickering, a lot of floaters, all this contributes to the disorientation…hard to explain. Thanks Jem and Rob. xx

Really appreciated the update Lizzie. Thanks. Hope it continues to just get better and better. :smiley:

Brenda

Thank you Brenda…it’s early days but fingers crossed! Really appreciate all the messages. xx

I know we wrote, but just wanted to reiterate how pleased I am for you. I am hoping so much that things keep on getting better.

In case those missed my last post, if you want to understand Lyme better, “Cure Unknown,” by Pamela Weintraub explains such a confusing topic in a clear manner. It’s a long book but worth the read to understand better and make an informed decision about whether ruling out Lyme might be useful. She covers diagnosis, testing (including igenex), really the entire history of this incredibly confusing illness. She explains it far between than I ever could.

Again, best of luck Lizzie!!!

Thank you Lisa. I have a copy of the book but I’ve struggled to get into it…as it’s very journalistic/formulaic and jumps a bit chronologically…I need to give it a better shot and try to get into it…it does look like it has a huge amount of info in it. xx

Great news. Are you taking propanolol too?

Hey WTC, no I stopped the propranolol after approx 5/6 days as I was starting the antibiotics. I tried it for a few months when I first got ill last July too…I think it may have helped the anxiety a little but for me not the dizziness, hopefully as in my case it’s Lyme not migraine triggering the dizziness. Have u started it yet? Xx

Very interesting DL! Glad you’re feeling a little better lately.

Keep us posted! :slight_smile:

Scott

Hey DL :slight_smile:

Just dropping in to say that it’s fantastic that you are starting to feel better :slight_smile: , you got the right DR, correct diagnoses & the right medication that is working! That’s all that any of us on here can hope for whether it’s Lyme or VM. I will be interested to hear what dr s has to say about this btw! X

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Hey WTC, no I stopped the propranolol after approx 5/6 days as I was starting the antibiotics. I tried it for a few months when I first got ill last July too…I think it may have helped the anxiety a little but for me not the dizziness, hopefully as in my case it’s Lyme not migraine triggering the dizziness. Have u started it yet? Xx

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putting it off for another couple of weeks! i will though! Great news ,very pleased for you. ANY WAY we can better is a good way! whatever it may be and whatever is causing it!

V v true! Anything to get back to a normal life!! It’s great ur managing a work placement. Amazing. Xxx

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V v true! Anything to get back to a normal life!! It’s great ur managing a work placement. Amazing. Xxx

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Just about! 6 days in! haha x thank you x

just watching the trailer about “under our skin” and it seems a lot of the people diagnosed with lyme suffer with fatigue and actual pains.

I have not had anything like that so am wondering if Lyme is still a possibility for me?

I haven’t really considered it before but I am willing to try anything now to get better

You do not have to have fatigue or pain to have Lyme. I used to believe the same before my research. Everyone presents in differing ways, as it can affect any part of body, and to complicate things further there are 100s of strains of Lyme and coinfections that often come along with it as well.