Just an update. I have been so so anxious lately and having increased panic attacks. I ditched nori as it made me consistently worse for 8 solid weeks. I took nothing for 2 months after that, but used valium now and again when things got really bad. Yesterday i went back to my GP as I don’t want to rely on valium. He put me on 80mg of slow release beta blocker. Today has been much better, anxiety is reduced and even my dizziness has diminished. For the first time in 7 months, since this began, I have felt almost normal at certain times throughout the day. Anyone else had success on beta blockers??? I was on them for 2/3 weeks at the very beginning. I am going to give them a good chance this time! Fingers crossed. One week today I see David Owen the UK lyme specilaist so I shall report back on what he makes of my positive bloods form the US! xx
That’s great Lizzie. Beta blockers are definitely one of the meds they use for MAV and many people have success on them. Metoprolol (similar to Propranolol) was Dr Silver’s first med of choice for me for MAV. Unfortunately I did not have your success on it as it made me feel really tired, drugged and depressed and my dizziness was worse so I did not continue with it. However as you know nori has been more helpful for me whereas it didn’t help you so I guess it just shows we are all different and respond differently to all these meds. I hope your appt next week goes well! xx
Thanks guys!!! Jem, nori was hell for me!! Not sure why. I am feeling immediately better on propranolol so yes I guess our migraines all manifest due to different mechanisms so it makes sense that different drugs work for each of us! How are you these days? I hope thinsg are improving for you?? When do you next see Dr S? xx
How are you Lisa? Have you begun your treatment? I managed to watch ‘Under our Skin’, very interesting, but was disappointed there was no info about diagnosis or testing, seemed to be highly politically motivated, but wow some miraculous recoveries, must be so inspiring for you? I so hope you feel better soon. I am still super confused about Lyme, on a mission to get some legitimate/reliable info!! It’s such a minefield, wish we were 20 years down the line, might be better info and testing protocols.
I have a load of info about NHS lyme testing as I’ve spoken to the Health Protection Agency testing centre here, Porton Down, and have some tips on how to get a Western blot via the NHS, I typed it all up but it didn’t post so I’ll re-post tomorrow. They said they use v different protocols to Igenex. I am still so unsure what to think or believe so I am getting a Westrn blot via Porton. I guess I just don’t lknow about Igenex, especially given the New York Times investigative piece where they sent them normal blood and received positive results…it’s so hard to know what to do! I’ll report back david owen’s views about them…we shall see. the month of antibiotics I took had no effect at all!! hey ho, the hunt for the truth continues. xx
I am not doing too bad although still not fixed so to speak! I see Dr S on 3rd April now so I will see if he thinks I should try adding another med or not. Let us know how the appt with Dr Owen goes xx
Jem and Lizzie - must have written at same time. sorry I didn’t answer. I have been in treatment for only 2 weeks. will be a very long road, and likely will get worse first. I will be likely measuring success in many month chunks. Trying oral antibiotics first (will need to take a few as there are many forms of Lyme as well as coinfections), and will need to take IV if orals aren’t successful or not successful enough.
Lizzie - I hear ya! It’s all so confusing and overwhelming. and, yes, the documentary didn’t touch much on diagnosis/testing, etc. It did help me to understand the role of insurance, etc., in all of this. I did a lot of my own research to learn more about diagnosis, testing, and treatment. I do know that article, and also know that there is no way of knowing that someone 100% “normal” for Lyme, as Lyme can lay dormant for many, many years, for some. and, they can be completely asymptomatic for a very long time. I did also get tested through another reputable laboratory 2 times and came positive on lyme specific bands. but, I do think Igenex is more sensitive at detecting, which is very good. still not perfect, but better. If I am remembering correctly, though, didn’t you have positive bands on a western blot that wasn’t through Igenex, anyway? I wish you all the best with Dr. Owen. I hope he clarifies things, and you can move on with confidence in your decision of diagnosis, one way or the other. Being in limbo is so hard. In the meantime, so glad you are having relief today!!
Thanks so much Lisa. I am so pleased you are forging ahead with treatment. The park ranger that made a full recovery in the documentary made me think of you. I am sure once you’ve have gone through this period in your life you will be back playing with your children like him.
I only got tested through Igenex. I was +ve on 7 bands for both Igg and Igm antibodies…going to take my results to David Owen and see what he says. In the mean time I’ll have the NHS test too.
All the luck to you, you are beginning you recovery now!!! Xx
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back at ya!! xx