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Undiagnosed but rapidly worsening symptoms: fly home ASAP or begin self treatment? (Herx in the air)

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Posted 6/25/2017 3:13 PM (GMT 0)
I'm new here from the Cardiovascular forum and today is the day that I think all of the pieces have finally fallen into place:

www.healingwell.com/community/default.aspx?f=42&m=3849761

In short, I believe that I have every Lyme symptom possible:

  • Burning muscle pain (especially in my back / shoulders) and muscle wasting (everywhere)
  • Very low / very high heart rate (both felt daily and verified with a holter monitor)
  • Whooshes of blood / a bounding pulse (especially in my head that makes my bed shake when lying down)
  • Left ventricular PVCs
  • Shortness of breath / sternum clicks with almost every breath / movement
  • 15kg weightloss in two months
  • Deafness / twitching / tremoring
  • Trouble swallowing
  • Bloating / every stomach problem possible
  • Very large varicose veins / blood "lumps" in my legs that decrease with leg elevation
  • EXTREME waves of anxiety / emotional hypersensitivity / brainfog (again, there are many, many, many more symptoms - please see my original post)


I've exhausted almost all other clinical possibilities:

  • Countless blood tests / x-rays; CT of head; CT of abdomen; endoscopy of stomach / sinuses; 24 hour cortisol test; ultrasounds of legs and groin; holter monitor test; stool tests.

    Which only found:
  • The aforementioned PVCS; some kind of "sleep apnea" (despite the fact that I don't snore - my heart spikes from 34 up to 100 something whilst I sleep); VERY bad varicose veins / valve failure (I'm 29); low morning cortisol amongst other things; and low IgG (yet no doctors have been able to determine why - nor really seem to care). "You're just anxious - Japan is very different to England!"


I've just read about 12 hours worth of printed/online Lyme literature but from your personal experiences:


  • Does this sound like Lyme to you?
  • How much worse will this get without immediate medication? (Do symptoms plateau or should I attempt to get back to London immediately / before I get worse?)
  • (Is it better to fly now - unmedicated - or later with even further potential herx?)
  • Is there some kind of short term "fix" that can at very least get me through a long distance flight?
  • If yes/no: is it (really) safe to fly?


The reasons for my (flying) concerns: 2 months ago I took a trip to Okinawa on my doctors orders to "relax". The flights were only 2 and a half hours each way. 2 and a half hours of crippling anxiety, an overwhelming feeling of impending doom and all of my bodily symptoms increasing 10 fold. After browsing similar posts on this forum I now believe this was a herx. And it was ****** AWFUL. I spent my second of three "vacation" days at the E.R. where I collapsed after a blood test (again, they found "nothing wrong"). (Side-note: I've visited 45+ countries in the past and NEVER before had any issues with flying.)

Fast forward to now: even further weightloss (65-> 50kg in two months), an increase in intermittent unbearable pain and feelings of complete hopelessness (I've now seen and been dismissed by 10+ doctors). I need to go home. However, even a direct flight is 12 hours long.


  • Do I just need to suck it up and do it now? Or should I attempt to get meds / detox for a while and then do so?
  • How bad can herx in an aircraft really get(?)
  • What have you personally found better in the past? One long flight or several short ones?
  • (My previous flight was only 2.5 hours. Have your on-board herx become better or worse over time during longer flights?)


Two days ago I quit my (dream) job that I spent my entire life working towards. I'm officially at rock bottom and I cannot stay here anymore but I am absolutely terrified of my body right now - especially at how badly it could go wrong on such a long flight. Any advice / tips would be very much appreciated.

(Sedation / stopovers / taking a boat?!)

PS. I've already contacted Girlie via e-mail but if anyone else knows of any LLMDs in London or Tokyo please get in touch. Thank you all in advance.

PPS. I have an appointment with a urologist tomorrow and an infectious diseases doctor on Tuesday but I'm not sure I'll even be able to get tested let alone get meds here.

Desperation aside: thank you for reading this and please accept my apologies for the convoluted post and probable stupid questions / naeivity. Any advice is genuinely welcomed and very much appreciated.

Post Edited (TokyoPVCs) : 7/14/2017 1:43:21 PM (GMT-6)

Posted 6/25/2017 3:51 PM (GMT 0)
Hi TokyoPVCs,
Welcome to the Lyme forum. I'm so glad you thought to do some reading on Lyme and company! It does sound like you have the symptoms of some of these infections.

Have you read our "New to Lyme?" thread yet? If not, I would encourage you to do so as ​it is packed ​​full of ​​important information​​, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​​ ​​​​And, here's another good place to find helpful detoxing rout​​​​​​​​​​​​​​​​​​​​​​​​​​ines​​:​​​​​​ ​​​http://www.tiredoflyme.com/detox-methods.html​​

I would suggest that you do some detoxing before trying to fly home. It may make the experience much more tolerable - along with an anti-anxiety med too most likely. Just to get you home again.

You may wish to start treatments too, but the timing of getting home may become more unpredictable, as things can change quickly while we are in treatments.

Not only ticks spread these infections, so do mosquitoes and deer flies (proven scientifically) and many more insects are suspected. So it's possible that you got these infections without being infected by general day-to-day contact.

I have the same list as Girlie, so you should wait to get an email from her, or hopefully someone will know of one in your area. Do be careful in seeing an Infectious Disease doctor though, as very few of them will understand how to properly treat these infections. Because you have so many symptoms, you need to assume you have chronic Lyme and other chronic infections that generally get passed with Lyme.

Here are the ILADS treatment guidelines so that you will know when you are getting appropriate treatments - any doc that won't treat according to these guidelines won't be able to help you heal from these infections - unless they are using alternative medicine, then things will change of course:
www.lymenet.org/BurrGuide200810.pdf


You may be able to find a Traditional Chinese Medicine doctor over there, if so, there are some other articles that we can share to help you get better treatments. Just let us know. We are here to help the best way we can. Oh -and there are NO stupid questions here! If you don't know, please ask!!!
Posted 6/25/2017 6:03 PM (GMT 0)
I'm sorry for what you are going through. I think it is very smart to investigate possibility of chronic infections playing a role in your health issues. Whenever there are multi-system symptoms (both physical and psychiatric) this angle warrants a careful look in the differential diagnosis and it is quite possible given your set of symptoms. Unfortunately most docs, including ID docs, will likely be repelled or underwhelmed by such hypothesis especially if labwork isn't 100% documenting the infections. And given testing regime for lyme and some of these other tbds it is a high hurdle to cross to be dx'd positive. An arbitrarily high hurdle for lyme imo which leaves many cases misdiagnosed in spite of labwork indicating pathogen presence, and for many other chronic pathogens the diagnostics just aren't there or solid enough or very expensive to access. Plus even if one manages to wrangle an accurate positive dx mainstream medical treatment protocol will often fall significantly short. The devastating magnitude and difficulty treating these infections is generally grossly underestimated by mainstream medicine.

Even if you are unable to access llmd, it may be worth looking into herbal antimicrobials, at least initially? One thing I'm a fan of is the provocation method, if you try out various antimicrobials and you get a worsening of symptoms or flare it is a good indicator of underlying infection (although not everyone flares, but quite a few do). It can be hard to distinguish from an allergic response though, which is why trying out various antimicrobials can be helpful to establish the pattern. Of course have to be careful to not blast yourself and potentially provoke an overly strong response.

Traveler has a lot of good suggestions. Wishing you good luck for your flight, I'm sorry things are so difficult right now. Sending lots of positive thoughts your way!!!

I find Dr Horowitz's books and writings on these conditions very informative. He has a Lyme/MSIDS questionnaire which I also found helpful in my own case, it helped point me in the right direction for my own case (scored very high). http://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

Post Edited (sebreg) : 6/25/2017 12:11:40 PM (GMT-6)

Posted 6/25/2017 7:01 PM (GMT 0)
If it were me I would want to be home before I started treatment if at all possible. Once I started treatment I got significantly worse, symptoms I had got worse and way more symptoms appeared. Plus some pretty bad herxing. Would not want to travel feeling that bad. May not be the case with you. Maybe take a valium or something before the flight, maybe some alka seltzer gold and glutathione too. As for your exgirlfriend, there are a number of people who believe Lyme's can be transmitted sexually. This was a shock to me as well and now I'm concerned about my wife. My llmd said the jury is still out on this one but there is enough evidence to say that it does that he tells all of his patients to use protection while in treatment. He says error on the side of caution. This might be something helpful to add to the new to lyme post, just that it MAY be a possibility.
Posted 6/25/2017 7:32 PM (GMT 0)
Does this sound like Lyme to you? (( Yes, it does. ))
How much worse will this get without immediate medication? (Do symptoms plateau or should I attempt to get back to London immediately / before I get worse?) (( I would go home first...then treat. ))
(Is it better to fly now - unmedicated - or later with even further potential herx?) (( I think fly now ))
Is there some kind of short term "fix" that can at very least get me through a long distance flight? (( Start detoxing now. ))
If yes/no: is it (really) safe to fly? (( I would think so ))
Posted 6/27/2017 2:37 PM (GMT 0)
Unfortunately, the responses/reactions you are getting from the doctors are pretty common from those that go by the standards of the CDC and IDSA. There are a ton of us here that were told the very same things.

It's not that what we deal with isn't real - it's that they are not keeping up on the science, and it's much easier to tell patients the same things many, many doctors do (anxiety, or other foolish things) - but that doesn't change the fact that we have a very real infection in our bodies.

I fully believe that it's passed sexually - it just doesn't happen every single time. The current studies are very compelling.

Yes, my eyes do the 'funny dance' when I look at certain patterns too. For me, it depends on how I'm doing that day as to how sensitive they are to the different patterns. For me, this is due to the effects of Bartonella on my eyes.

While most will say to stay away from Benzo's (and typically I agree) because of the possible addiction - if you were only going to take it on the flight, that would not be an issue - but I hear you on that specific Benzo! But, sometimes people have too much anxiety with these infections - I did for a time. That's when Benzo's are needed, and although they are addictive, they can be weaned off of them.

Let us know when you make it back home!!! And of course, please do keep in touch until you leave.
Posted 6/27/2017 3:13 PM (GMT 0)
I wallpapered my kitchen, the kind that has a raised pattern in the paper and then you paint over it. Now my kitchen makes me dizzy but don't feel like pulling down that paper. That was the first time I noticed how pattern effects me, but floor patterns are bad for me too.
Posted 6/27/2017 7:33 PM (GMT 0)
Gee, sorry. Are you located in Tokyo or London or both?

South of London there are people doing the same technique that helped me TONS with loads of problems, called ART, from dr. Klinghardt. They can easily tell if you have lyme or not, by energy testing though.

I highly recommend.

http://www.autonomic-response.co.uk/contact
They're in West Sussex.

Scott Forsgren has a website called betterhealthguy.com.

He's been treating lyme and many other health issues for 20 years, now considers healed from lyme.

He tried TONS of things, really, spent thousands of dollars, and said just a couple of days ago in the 2nd lyme symposium that ART technique helped him a lot and that he is still using it today. All people who are trained to do ART use dr. K's technique.

I hope you find help soon, it's not fun to be ill, not being able to work, etc.

I know Tokyo too, lived near there (in Hino) for about 4 years. Crazy city, but nice energy!
My husband has been to Okinawa, I didn't go (no money then, still a student!). I lived in Kyoto too, nice city. I do miss Japan!
Posted 6/29/2017 1:11 PM (GMT 0)
Thank you for your kind and informative replies as always. I'll reply more in depth at a later time but for now: please help!

My flights are booked for Saturday (12 hours + a 5 hour stopover + 3 hours) Tokyo to London. However, today is also the day that my throat has decided to stop working (it feels like I can only breathe if I swallow very painfully). (And this is on land, not in the air!) Does anyone have any advice on this? Ice? A particular supplement? Don't eat for a few hours / at all when flying? Cold/warm drinks? Massage? Desperately,

Me.
Posted 6/29/2017 1:33 PM (GMT 0)
Is it possible that your lymph nodes around your throat are swollen? If so, gently massage them a few times a day.

Or is inside your throat actually sore?

Congratulations on getting your flight home though! Be sure to stay well hydrated is the main thing. I would suggest taking snacks with you on the plane. Eat a little something every few hours.

Start a new thread about flying with Lyme - that would get the most responses at this point, I believe.
Posted 6/29/2017 2:14 PM (GMT 0)
They do feel a little larger than usual. It's hot tonight but I seem to be sweating a little more than usual, too. God darn it will this thing ever cut me a break?

What kind of snacks do you recommend? Thanks again for your reply as always!

(I'm not sure why my post is autocorrecting to "God darn it". Heh!)

Post Edited (TokyoPVCs) : 6/29/2017 8:19:15 AM (GMT-6)

Posted 6/29/2017 2:23 PM (GMT 0)
LOL - it's autocorrect!! Is there any rhyme or reason to it usually??

You can take things like nuts or other prepackaged snacks, I believe. Look for some healthy options. Eat during your layover if you can afford the prices! And be sure to stay well hydrated.

Maybe if you take a look at the airlines website or called them, they could tell you what kind of snacks are allowed on the plane (tell them you need to eat every few hours or you will get very ill) and see if they allow you to take bottled water that is unopened on the flight with you.

Lymph massages: Here is a video of how to do lymph massages - only don't do them 50 times. Only until they are a little sore, then stop and do it again in a few hours again until they no longer feel so large and sore: /www.youtube.com/watch?v=QA-wi0d7-Ro
Posted 6/29/2017 2:44 PM (GMT 0)
Problems to breathe, as though no air you breathe is enough, was for me mainly a babesia symptom.
It could be very bad, sometimes, specially if I panicked.

And problems with swallowing, change in taste, smell, is a normal lyme symptom, because it attacks the sensory cells, if I remember correct. Most people have that.

And the difficulty to swallow, it's also common. I can't remember why, but may have to do with some palsy in the throat (?)...
Posted 6/30/2017 10:11 PM (GMT 0)
Today's the day and I've never felt worse. If you don't hear from me again I didn't make it.

Thank you again for all of your invaluable advice. All the best and please keep fighting / researching this horrible ******* thing; a LOT of people are going to die from this unless something changes.
Posted 6/30/2017 10:42 PM (GMT 0)
We all will be thinking and praying for you. I am sure you are on the flight right now. Please let us know when you are safely home.

Patty
Posted 7/2/2017 4:43 PM (GMT 0)

summer16 said...
We all will be thinking and praying for you. I am sure you are on the flight right now. Please let us know when you are safely home.

Patty

Wow, I was in a bad place leading up to those flights (I really, truly, genuinely "knew" something terrible would happen).

In short, however, the pain and discomfort was pretty consistent but thankfully I had no worsening / major issues whilst in the air.

(So different compared to my previous two flights last month!)

I took two paracetamol before boarding and used nothing else other than Bach Remedies Five Flower Remedy (in water), an eye mask, flight socks and earphones. Very sore / confused (as always) today but no worse than it has been for several months in a row now.

I hope this will be of some reassurance to anyone else who may be having to fly soon and thank you so much for your kind message summer16! Now to speak to my NHS GP tomorrow morning...
Posted 7/2/2017 5:36 PM (GMT 0)
Glad to hear you made it safely and without a worsening of your symptoms.

Thank you for posting!

Please update us and let us know how your appointment goes. Are you armed with information to show the Doc?
Posted 7/2/2017 6:06 PM (GMT 0)
We are standing anxiously by for an uodate.

Your in thoughts and prayers
Posted 7/2/2017 6:18 PM (GMT 0)
Oh YAY!!! I'm so glad you made it without major issues!!! Please do rest and detox now, and let us know how you are doing. And please do let us know if we can be of help in whatever!
Posted 7/2/2017 8:06 PM (GMT 0)
Are you guys actually angels?! Thank you all so much!

Girlie said...
Are you armed with information to show the Doc?

I have a file that is literally bursting with all of my Japanese medical reports (proof of heart palpitations, high / low holter monitor results, ultrasound leg swellings, "almost normal" blood tests etc etc etc). I've also printed the BurrGuide symptoms checklist and lymedisease.org completed symptoms form. Am I missing anything?!

I'm going to a walk-in clinic at 8am so I hope I don't get too much of an eye-roll from whoever I see. (I haven't had the best experience with the NHS before!) I will of course keep you all updated and thank you again for your continued support!
Posted 7/2/2017 8:19 PM (GMT 0)
All I remember is that you said that you lived in the UK - have you emailed Girlie (or you can email me) for possible UK LLMDs?

I would also encourage you to have this on hand as well - the ILADS treatment recommendations:
www.lymenet.org/BurrGuide200810.pdf


And yes, Girlie is our resident angel! smilewinkgrin
Posted 7/2/2017 8:34 PM (GMT 0)

Traveler said...
All I remember is that you said that you lived in the UK - have you emailed Girlie (or you can email me) for possible UK LLMDs?

I would also encourage you to have this on hand as well - the ILADS treatment recommendations:
www.lymenet.org/BurrGuide200810.pdf


And yes, Girlie is our resident angel! smilewinkgrin

Lol... hardly Traveler. devil

He did say he has BurrGuide - looks like he is set.
Posted 7/2/2017 9:42 PM (GMT 0)
Yay, you did it! Glad you are home safely. Hopefully, you will have a good doctor's appointment. Can't wait to see what he/she has to say? Is this doc lyme literate?

Patty xo
Posted 7/3/2017 8:16 PM (GMT 0)
TokyoPVCs,

How was your appointment? I used to live in the UK and didn’t have the best experience with the NHS either.
Posted 7/4/2017 1:37 AM (GMT 0)
Wow it really does sound like lyme! Because of your low IgM can you please get a full immune panel and make sure you don't have any immune deficincies? If you have a genetic one you must treat that too along with your lyme.
Make sure to check for mycoplasma babesia and bartonella too!
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