This comes from a very nice lady overseas who visited California and was bitten. I've edited some of the personal info, but the rest is in her words.
What do you think she is dealing with, and any suggestions? Thanks for your input. All suggestions welcome.
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I dont know whether you remember Lucy but I was bitten in the L/A in 2005 (visiting family). When I first got bitten, I was in L/A getting changed when my hubbie came in the room and noticed three big classic bulls eye rings on my back, he exclaimed what on earth is that?
I looked in the mirror and said the fatal words, never mind it doesn’t hurt so just ignore it!!
When I got back home I felt very unwell, and within 4 weeks woke up with a neck double in size, lymph glands so swollen, heart beats as rapid as a mouse, rib cage so painful with purple veinlike strange streaks across it, fever, legs and arms that couldn’t move, drooling from one side of the mouth, chronic fatigue and totally vacant!
My Dr. said ...glandular fever! (we’ll say no more on that).
Then came tumour on thyroid both removed, and for six year I couldn’t work and struggled to do anything but simple housework on a good day and do my level best to engage in door to door work helping people know there bible – that was my happiest time when I was out but wasn’t very often.
Then in 2011 I was seeing a myriad of consultants (the usual) one was a professor XXXXX, who wasn’t my usual rheumatologist but had been drafted in out of retirement to cover a shortage of Drs so I went in to see him and explained my pitiful state, broke down and told him that I was an extremely fit and healthy person but then after taking a trip to the US came back ill and never recovered..........then he asked me, were you bitten?
I said yes, described the rings on my back and then after six long years this man joined all the dots together and gave me the clinical diagnosis of Lyme with co-infections........the book finally got re-opened.
I got put on cefuroxime for 6 mths and then rifampicin and Doxy for 4. And he gave me some valuable advice, to take vitamin B12, CoQ10, and fish oils.
I did get some relief from my symptoms but sadly after six year undiagnosed this wasn’t going to be the end, as you well know dear Lucy.
So, so long as you havent nodded off by now, you are fully entitled to by now, I will explain what has changed and the symptoms I have now, as I would be very interested in knowing what resemblance yours has with mine:-
Encephalitic head & left eye pain usually on a monthly cycle, left eye enlarges slightly and the vision is blurry and not very good.
Pain in the cheek bones, teeth when eating, and intolerant to noise, especially certain frequencies, cannot bear two voices in the same room.
Lots of bone pain, neck, back, hands sometimes knees
Bowel bleeding on and off
During the night, what I describe as an internal shaking in the shin bones (like theres a million tiny creatures under the skin, burning heels, and night sweats – not every night very cyclical.
Swinging energy levels
Brain fog on and off
Oh yes that Rage thing!
So, there you have it.
Its just that I dont have anyone back here to identify with, the European bites and US bites are definitely different me thinks!
Posted by Keebler (Member # 12673) on :
- The assumption here is that she has no access to an ILADS LLMD or LL ND either due to location or budget. I'm moving on from there.
1. Has she been assessed for celiac?
2. Is she gluten free?
That's where I'd start considering the bleeding bowel. Of course, there are more obvious things that could be but gluten could very well be at the base of much of this, even while infections are on the plate.
The more I learn about gluten, even in non-celiacs, for anyone in such poor health, IMO, a gluten-free diet is a must for at least six months - or six months past a recovery point.
Of course, this shouts unresolved tick-borne infections but also possible damage to vestibular system from either infections or Rx, or both.
Rage often shouts "bartonella" but some use that term to express just how angry the is process makes them and that's understandable but not clinical.
Seems simple in a way: she needs a proper doctor.
But I assume she has none so has to do this for herself.
Does she have budget enough to explore other ways?
If she wants opinions as to if this is still tick-borne infection mix, well, yeah. The treatment she got did not seem inclusive enough to consider the various forms of Bb, much less all the possible coinfections.
While treatment of a year or so was intense, it was not long enough or comprehensive enough. And, really, good & successful treatment does not have to include IV Rx. And it does not have to be unbearable. With liver & kidneys support methods along with even oral Rx, it can be easier. -
[ 01-11-2016, 07:37 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- "intolerant to noise, especially certain frequencies, cannot bear two voices in the same room."
HYPERACUSIS is very common with Bb and other TBD, and magnesium deficiency and also from gluten damage. Sadly, the very Rx used to treat the infections, though, can damage hearing in all sorts of ways.
Superior Canal Dehiscence should also be considered. -
Posted by Keebler (Member # 12673) on :
The world's leading non-profit resource and support group for people with superior canal dehiscence syndrome
Somewhere here is the detail for exactly how to get proper CT scan. It's very particular. -
Posted by Keebler (Member # 12673) on :
- " looked in the mirror and said the fatal words, never mind it doesn’t hurt so just ignore it!!" (end quote)
This really says that she is in dire need of someone in person who can help guide her. Is there a lyme support group near her? Some other kind of emotional support group ?
Is she getting good nutrition with good food? That's a basic question that matters greatly and may be a place to start so that the giving up and ending it feeling does not loom so large.
Start with if she's eating properly, has access to food, safe housing, quiet housing.
If she were to be here, I'd also tell her that it's okay to feel like ending it. That's okay. That's normal, actually, to feel like that. It's not healthy to push to ignore it and say it does not hurt when it does.
Rather, that, absolutely, this is rough & tumble awful. Yes, it is. And, it can get better. Along the way, work from the basics on up. Food, water, shelter - how's all that?
Many times my mood has been close to hitting the deck and just checking that my blood sugar has not dropped to the floor - getting a good meal - can bring me back from that
so that the other issues can be managed bit by bit.
Would Buhner's books / website be of help? If she has no doctor, that's where I'd start regarding the TBD. IF she has access to herbs in the country where she lives. Not all countries allow people access to herbal medicine.
Yet, there may be a naturopathic doctor who could help in some ways. -
Posted by Catgirl (Member # 31149) on :
It sounds like parasites are in the mix along with lyme, babs and bart. If I were her I would treat parasites.
Posted by bluelyme (Member # 47170) on :
Send her some msm. See if she can get abx in neighboring countries?
Posted by Tincup (Member # 5829) on :
Thank you, thank you, thank you! Will be back to read in detail tomorrow!!
Posted by Robin123 (Member # 9197) on :
Are there any doctors treating Lyme and co-infections anywhere near her?
Whenever there are eye symptoms involved, I suggest trying drinking mangosteen, an anti-inflammatory juice. It stops all my eye symptoms. I like the Mango-Xan version, as it's the most tart. It's found in health food stores and online.
Re pain in cheeks and around teeth - as an experiment, she could try some cranial therapy. If the head bones are not where they should be, it can cause a lot of head and dental pain. It's fairly easy to clear up, too - usually took one or two times for me.
Re noise intolerance - be ready with earplugs - I like Max's, which shape easily to one's ears.
Re noise intolerance - try finding access to PEMF - pulsed electromagnetic frequency therapy - we hold a white coil while the machines clicks the pulses. It quieted down noise problems for me for a little while, and then I didn't have access anymore. Who's to say what could happen if we did have more access to it?
Tumor removed, or thyroid removed? Not clear what happened here. Is she taking any thyroid? Can she medically take any thyroid? Lack of such can play a part re brain fog symptoms. Can, but not always.
Re pain - try taking turmeric - I get it in bulk at the health food store and dip empty capsules into it. Reduces muscle and joint pain for me.
Am wondering whether getting lymph drainage massage might help symptoms.
Last idea - whether she would want to join the CaliforniaLyme online chatgroup since she got bitten in LA. I don't know if that would help, as everyone is different, but it's an idea.
Posted by Tincup (Member # 5829) on :
I was asked to thank you all kindly for your wonderful responses. They've been shared and are being considered as we speak.
![[group hug]](graemlins/grouphug.gif)