posted
I am literally housebound. Five months ago I had never heard of Lyme. Worked full-time and ran a business. Are these symptoms normal I have no history of anxiety or depression.
Disassociation. /tinnitus and hyperacusis/ photosensitivity/Burning skin/Joint pain/Tremors/Spasms/Insomnia/Nervousness/Anxiety/ Speech limited vocabulary and slurred/Intrusive memories/Nystagmus. Which makes peripheral objects move/Night sweats/
Eye floaters/Constant sore throat and runny nose/Pain in eyes and forehead/ Zapping sound when moving eyes/Tingling on lips and right cheek/ seeing blue flashes.
I have been prescribed Doxy, But it doesn't seem to be working. Thanks for any advice.
(breaking up the post for easier reading for many here)
[ 11-17-2017, 12:17 AM: Message edited by: Robin123 ]
Posts: 5 | From Leicester UK | Registered: Nov 2017
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome to lymenet Neurotick
Yes, yes, and yes. Your symptoms are normal to Lyme sufferers. Scary, debilitating, unbearable pain, life alternating.
You must get educated on Lyme and other tick born infections. You must find a LLMD with proven treatment successes. You must get your diet clean, and stress levels low.
You must set aside monies, as Lyme treatment can be expensive. You must set aside a full year to get better, maybe longer. And you must not get discouraged because you WILL get better with treatment.
We we help you in any way to fight this horrendous disease. Keep treating, keep fighting, never give up.
(breaking up the post for easier reading for many here) đź’š
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
OMG... poor you.
But if this gives you comfort, it does not look weird to have all yous symptoms, for many of us.
Doxy only is just scratching the surface of a bigger problem.
I would be wary of electrosmog (if you are bound to one place full of wifis etc, that is not good...).
Try to diminish exposure, as electrosmog made all my neuro symptoms worse...
It affected my sleep A LOT in the past (and it still does, but to a lesser extent now).
It looks you have not only Borrelia, but babesia too (photosensitivity + night sweats were for me, mostly babesiosis).
You gotta find competent help, as Bonnie said. And keep reading about possible treatments.
Many people get well, so don't desperate. I was also home bound for months, barely able to walk.
Taking a shower was an extremely hard task for me.
It's all gone, but it took time, patience,and a lot of treatments.
Crossing my fingers you'll find some good help fast!
Posts: 6199 | From Brussels | Registered: Oct 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Taking doxy alone will NOT cure you because lyme can evade any one antibiotic alone. You need to be on 2-3 lyme antibiotics simultaneously.
When you take doxy alone, the lyme bacteria just turns into a cyst or "persister" form and waits for you to stop taking the doxy. Then, the cysts open up and lots of lyme bacteria come out and continue to multiply and invade your whole body. See top of page 13.
There are 2 antibiotics that are able to kill the cyst form: metronidazole (flagyl) and tinidazole. So at a minimum, you need to add one of these.
You also need to be tested/treated for lyme coinfections since it is a rare person who has contracted just lyme.
Read and study the Burrascano Lyme Treatment Guidelines found here:
Pay special attention to the section "Combination Therapy" and also the high dosages of antibiotics which are necessary to cure this disease.
Lyme antibiotics and their dosages are listed alphabetically starting on page 18 and following.
It can be difficult to find a doctor who will treat the Burrascano way. Here in the U.S., we contact lyme support groups to find such doctors.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
And, to answer your question, all of your symptoms should go away when you get on GOOD lyme treatment !!! (but not on lousy lyme treatment).
The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you so much for your reply. Thats the first ray of hope I have had in five months. I am based in the UK. At present there are no Lyme doctors over here.
The first four months I was treated for anxiety and depression. I have been laughed at and ridiculed by doctors and neurologists. Even friends and close family believed I was suffering a breakdown.
Its only the last two weeks that I have found a neurologist that believes that I am not crazy and treated me with Doxy looking at mt blood results and presentation.
When I look at forums I do not see most of my symptoms. To be honest I have read two similar cases and they did not end well. I am going to reply to all of you good people. But it takes a long time to string sentences together.
(breaking up the post for easier reading for many here)
[ 11-17-2017, 12:19 AM: Message edited by: Robin123 ]
Posts: 5 | From Leicester UK | Registered: Nov 2017
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Thank you so much for your replies it means so much to me. I have decided to fight this disease now. I was thinking I should detox first?
(breaking up the post for easier reading for many here)
[ 11-17-2017, 12:20 AM: Message edited by: Robin123 ]
Posts: 5 | From Leicester UK | Registered: Nov 2017
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I guess i would accept it (if I knew nothing better would come too early...).
Is it rocephin iv?
If you're lucky, most of your symptoms could just disappear after the iv. (we sometimes hear of such wonderful lucky stories...!!!)
But if you are just a common guy, like most of us, in no way a single antibiotic, drug or herb will easily heal neuro-lyme.
I'd stop eating junk food... it will only make things worse...
Have you already given up, without even starting the fight? I hope not.
Many people will improve with treatment. But if you gave up, well, just try then the single bullet treatments whoever is proposing: what do you have to lose anyway?
I know the cost of life in the UK is astronomical... Maybe you gotta move in with a family member, until you get better?
If you treat that fast and thoroughly, some people do improve rather fast. Some others take time, quite some time.
Finding good professional help, at least in the beginning, is an excellent idea (and probably the best idea, if you are a beginner in lyme).
I hope you don't give up. Not that fast (before even starting treatment properly, I mean).
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I had most of those symptoms and am well today. Not all stories end badly. And it sounds like you are catching your disease much, much sooner than I started treating mine!!! I was misdiagnosed for years ... decades ... and am completely well today.
You do need to get a more comprehensive treatment. I was having limited success with antibiotics, so switched to an alternative treatment I went to Germany for.
However, in addition to that treatment I did many other things.
The IV antibiotics maybe be a good place to start.
You will also need to look at coinfections. It really sounds like babesia may be part of the problem.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
AAAAmen on the Babesia!!! Her infection is screaming Babesia.... Get on multiple antimalarials ASAP!!!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes. Your night sweats are a classic symptom of babesia.
Babesia symptoms:
"night sweats, air hunger, an occasional cough, persistent migraine-like headache, a vague sense of imbalance without true vertigo, encephalopathy and fatigue." (p.23 of Burrascano)
Babesia treatment:
"the current regimen of choice for Babesiosis is the combination of atovaquone (Mepron, Malarone), 750 mg bid, plus an erythromycin-type drug, such as azithromycin (Zithromax), clarithromycin (Biaxin), or telithromycin (Ketek) in standard doses." (p. 24 of Burrascano)
"The duration of treatment with atovaquone combinations for Babesiosis varies depending on the degree of infection, duration of illness before diagnosis, the health and immune status of the patient, and whether the patient is co-infected with Borrelia burgdorferi.
Typically, a three-week course is prescribed for acute cases, while chronic, longstanding infections with significant morbidity and co-infection will require a minimum of four months of therapy. Relapses have occurred, and retreatment is occasionally needed." (p.24)
I hope you can get some atovaquone and one of the antibiotics that are used with it to get rid of babesia.
Of course, you ALSO need lyme treatment. Take the IV antibiotics that are offered and see if you can get the doc to add metronidazole to that.
You will have to eat the Burrascano diet to prevent yeast in your mouth. No sugar, fruit, flour or flour products, etc. See p. 34 for the details.
Yeast will make you as sick as lyme, so be sure you go on the diet when you are on high-dose antibiotics.
The more infections you have, the sicker you will be. So, lyme plus babesia makes for a very sick person. See this quote:
"Co-infection generally results in more intense acute illness, a greater array of symptoms, and a more prolonged convalescence than accompany either infection alone.” (p.23 at very top of page)
(breaking up a paragraph for easier reading for many here)
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The de-personalization and derealization will go away with good lyme treatment. I had some of that.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Our family member had the de-realization and de-personalization and I found that the homeopathic remedy Baptisia tinctoria 30c helped a lot.
It worked starting at the bottom of the feet and then worked it's way up the body in about 20 minutes.
That was just one time using it! Then, later on whenever that same situation came along we would repeat it and it always helped.
Not sure if it will work in every person's case but it is a homeopathic specific for that de-realization/de-personalization symptom picture.
Homeopathic remedies work by changing the terrain of the body towards a more healthy terrain.
What I like about remedies is that if I really hate one after I try one I can always stop it with strong mint - like an Altoid, or food grade peppermint water.
Hence, if the remedy is really good then I avoid those things because I don't want to stop my remedy!
Posts: 764 | From Northwest | Registered: Sep 2014
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many have posted excellent suggestions for you above. Indeed, it is imperative that assertive, direct attention be given to lyme & other tick borne diseases (TBD).
Combination / Rotation approaches are required in the right combinations and rotations to meet the science of lyme / TBD yet should also be individually suited to your precise case.
To help you better tolerate treatment [whatever it turns out to be - at every stage] some combinations of liver support are absolutely required to protect and support your entire body, including helping with brain function.
I cannot state how important this is also to help protect your hearing and balance (more about that in the second links set):
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
Be sure to protect ears from noise with dB rated muffs / earplugs even with a hairdryer, blender, vacuum, yard equipment, traffic. Be very careful at any sporting or music events. Noise over 85 dB (decibels) for 90 seconds can cause damage.
A hairdryer is about 100 dB. Everyone should wear earplugs with any hair dryer. Always.
Antibiotics and other Rx can lower that threshold even after Rx is stopped.
HEARING PROTECTION is required. Take care of your ears at all times so they can take care of you.
posted
You will improve with treatment that works for you. Many people get well enough to function again. That's your goal!
Most go through the ridiculing and the disbelief. Don't let that keep you from learning from us and knowledgeable others what to do!
For me, my dissociation went away as soon as I went on Armour thyroid supplementation. My doctor tested me for thyroid markers and I was found to be low thyroid. Armour provides both T3 and T4. Some do well with Naturethroid. So ask your doctor to blood test you for thyroid markers.
Tinnitus and hyperacusis can respond to PEMF treatment - that's pulsed electromagnetic frequency therapy. I think the SOTO machine would be one of the cheaper machines. Otherwise, holistic health professionals can have some of the fancier machines.
An ill body is low in electromagnetic energy and these machines help boost it and help all tissues work better, including nerve tissues that are irritated and causing the hearing symptoms.
My joint pain responds very well to turmeric. I get it in bulk from the health food store and dip empty capsules in it. Turmeric is an excellent anti-inflammatory spice.
Tremors and spasms can be due to low magnesium. The infection uses up magnesium for its own reproductive needs. There are different forms of magnesium and we all need to find which form we handle ok. For me, it's mg glycinate. For others, mg citrate. Etc.
Re insomnia, I took benadryl capsules for 30 years. I started with 25mg, then went to 50mg. I'm currently taking a break. But it did work.
Night sweats - many people here are pegging it as babesia, a co-infection, needing treatment.
Eye floaters and eye pain - my eye symptoms have successfully gone away by my drinking mangosteen juice, an anti-inflammatory juice I get at the health food store.
You mentioned pain in your forehead. If this is related to sinus pressure, when I first started drinking mangosteen juice, my sinuses ran for 48 hours and I didn't even have sinus symptoms.
We are all different in how we respond to any remedy. The trick is to find out what we respond to. All I or anyone can do here is mention what works for us and then it's up to anyone if they want to try something.
But you can feel better! We will help you get there!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thank you so much for all your support, advice and kind words. Up until now the past five months has been a lone battle just to get a diagnosis. I am spending time researching the mass of information that you have given me. I am very grateful.
Definitely took onboard the co-infection babesia. Unfortunately, the tests in the UK do not pick up any co-infections. Also, the medical profession will not except more detailed tests from abroad. After further research the NHS infectious disease clinic do not except that co-infections cause problems.
So in regards to gaining further prescribed antibiotics I am pretty stuffed. No doctor here will do that for me. In regards to my promised IV I will have no input into what antibiotic they will use. It’s an absolute shambles over here.
The only options I have is the homeopathic and dietary route. I don’t know how it works in the states but it seems at least you have options. Thanks also for the tips on depersonalisation.
six months ago I would not believe I would have to wear sunglasses just look at my screen. Also jumping out of my skin every time my central heating switch clicks.
(breaking up the post for easier reading here)
[ 11-17-2017, 04:48 PM: Message edited by: Robin123 ]
Posts: 5 | From Leicester UK | Registered: Nov 2017
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: MAGNESIUM - Informational Links set -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't read your last post due to tight spacing but did get this from it. You say:
". . . only options I have is the homeopathic and dietary route . . . "
homeopathy is not the same as herbal medicine. Homeopathy is very distinct from the use of herbs and other nutrients (vitamins, minerals).
IMO, homeopathy and diet will not be enough to address lyme / TBD. It will take so much more. Herbs also might not be enough.
I know you are not in the U.S. yet you can find the corresponding organizations / kinds of doctors where you are, hopefully.
Still, do all you can to find the best expert you can. It's worth the search. In the meantime pf course do what you can but be certain to come to a plan that has a chance of working:
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
For those considering complementary support methods / or other avenues entirely:
Herbal Safety considerations & reference books; etc.
BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . .
posted
Thx for posting here. If you could break up your posts into a couple lines at a time, that would help many who want to read what you're typing here.
Could you at least keep reporting here how they want to treat you, including IV med?
There's other ways to treat babesia. Research Stephen Buhner herbs and Byron White formulas.
Posts: 13116 | From San Francisco | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hey, neurotick! I checked through my files for you and found the name of a doc in the UK who treats lyme. Got the name from Dr. H's Facebook page, so this is a worthwhile name to pursue.
Also, I gave you the LymeNet website that lists 3 UK lyme support groups for you to contact for other possible leads.
Finally, I sent you the name of a good lyme clinic in Germany and the doc to see there.
Hopefully, as you persist in looking for lyme doctors, your search will be fruitful. You have to persevere and it is work. But, the doc you pick to treat you is one of the most important decisions you will make regarding your lyme disease.
The doc is the key to getting rid of this horrendous infection (which is really a number of infections). I can't emphasize that enough. The doc is the key.
I know you are housebound, so perhaps you can begin thinking now how you would travel to see a good doc.
There are folks here who have lain in the back of a vehicle while friends or family drove them to the doc. You may need medication to enable you to do this, etc.
Anyway, work on overcoming whatever roadblocks present themselves because good treatment is your way out of this hell hole!!!
Let us know how it goes also. We are rooting for you!!! Yes !!!!
p.s. Be sure to ask any doctor/doctor's office you contact if the doc will do telephone appointments with patients who have difficulty traveling. Often they will.
That can be a consideration for you in making your choice.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Your symptoms sound just like mine when I was finally diagnosed in March 2017 with Lyme and Babesia. I'm happy to report that 75% of my symptoms are now gone or drastically reduced. Hang in there. There is hope.
Posts: 18 | From maryland | Registered: Mar 2017
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
It's funny other lyme forums did not have people with your symptoms!
They look SO COMMON to me.
I also had depersonalization, extreme light sensitivity, tremors, fevers, sweats etc.
it is indeed screaming like babesia.
I'm also well, symptomless.
But symptoms did not disappear on their own. A lot of work was necessary. A LOT!!
A lot can be done on your own. Buying Buhner's books is a GREAT START!
which part of the UK you are?
Can you afford treatment? I would take TF's suggestion and come to Germany!
Also, here in switzerland there is Parac. Clinic, that treats holistically, but with quite some success.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Yes, your symptoms are very familiar to many of us here.
I agree with all the wonderful wisdom above. I just wanted to add one thing. Some people can jump in with both feet when it comes to treating with antibiotics.
I had to work my way up on all medicines I was given or I would have severe herxes that I couldn't handle.
It's not as bad now, but when I first started treatment, I had to go slow.
We are here for you!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
I just read your first post and Babesia came to mind. Then I saw others here picked up on it.
I had most all of your symptoms in the past and they resolved with Babesia treatment (Mepron/Biaxin/Artemisinin. In 6 weeks I had my life back.
Posts: 184 | From CT | Registered: Aug 2006
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And it sounds like you are catching your disease much, much sooner than I started treating mine!!! I was misdiagnosed for years ... decades ... and am completely well today.![[bonk]](graemlins/bonk.gif)
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