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Posted 12/26/2015 8:11 PM (GMT 0)
Hi to everybody.
I`m 32 years old male in good shape( i was..)
In my country there are no LLMD or even a lime doctors.... It`s small country - only 6 milions.
I will be very happy and thankful if you can hep me.

I start feeling unwell 5-6 years ago. Symptoms come and go - headaches, weakness, random pains. They stay around 2-3 months and go away. I go to doctor check them, the doctor told - you are ok , i wait for some tome and i feel ok...

2 years ago i start with leg pain. There are NO reasons for the pain. It was just there very strong. I suffer for 1 year and it has gone.
And the nightmare begin...
Everything start like flu - with swollen glands, temperature and sore throat.
After that I have pains,
muscle twitching widespread,
general feeling unwell,
pelvic pain
back pain
skin rash
knee pain
dry mouth
lots of cavities on teeth
muscle spasms,
whole body tremble, shaking
very big swallowing difficulties that progress,
tongue tingling,
pain in the bottom of neck
lisping, slurring,
white tongue
insomnia
electric sensation in spine ( rare)
numb tongue,
eye floaters,
blurred vision
sometimes eyes get tired very easy
GI problems,
loss of balance,
I can`t remember anything( I`m university professor)
heavy brain fog,
sometimes heavy headaches,
alcohol intolerance,
post nasal drip,
numbness in feet,
shooting pain in eyars
stiff neck
strange smells
anxiety

The biggest issue now is slurring, lisping, trouble swallowing saliva and somehow stiff tongue with strange sensations..... This is for 3 months and the symptoms are increasing..

Another issue is heavy chronic Fatigue - I sleep 14 hours a day, after that I make 2 or 3 daytime naps and I`m still tired....
Mood changes also
Breathing troubles

sometimes the muscles are just weak, uncordinated....
numbness in arms,
sometimes in feet too.
Tongue is scalloped,
Very sensitive to cold - i start to shake violent. Every muscle
brusixm and so and so....
AND I WAS HEALTHY 2 YEARS AGO.....

I have done 4 MRI
4 EMG ( not on the tongue)
Full blood work
Elisa test negative for Lyme
Thyroid OK


Doctors find
Low vit. D

Can this be lyme, what kind of another test must I done.....

I don`t remember to be bitten from thick... I`m hunter, have cats and dogs.
Do the symptoms of lyme come and go in some months??? I think i have something neurological, but all docs told me I`m fine - go away..... This is ruining my family and work...

What kind of herbal treatment can I start?
I read about salt and vit c protocol.
We have here Cats Claw?

!0x for all advises

Post Edited (corwin) : 12/26/2015 4:28:36 PM (GMT-7)

Posted 12/26/2015 9:13 PM (GMT 0)
Corwin, your symptom list sure sounds like lyme but I am not a doctor.

Did you read the first thread New To Lyme?.......Start here! ? This is a good place to start. Lots of good information there.

Someone with more experience will be along shortly and be able to help you more. I just didn't want you to feel ignored.

I remember my first time coming here and I can't tell you how relieved I was to find this place. So much information and so many different choices to get on your road to better health.

Hang in there.....
Posted 12/26/2015 9:14 PM (GMT 0)
Hello, corwin! Welcome to the forum! Though, apologies for the troubles that have brought you here. Nonetheless, you're in good hands here.

That said, yes, it definitely sounds like Lyme and/or some of its coinfections could be the culprit. I, along with many here, know or have known symptoms like those. The disappearance of symptoms, then reemergence later on, that's something I personally haven't dealt with, at least not to the point where the symptoms are gone completely, but others might. I'm sure they'll add to the conversation eventually.

It's a shame you're not able to see an LLMD. Though, to be honest, some of us may as well live in countries without them as well, considering we can't see them for one reason or another - mainly money. So, you're not alone in that boat, for what it's worth. I wish I could say that were for the best. It's hard being on your own, even if the people here are a lot of help with their knowledge, encouragement, and just the fact that a lot of our experiences are shared.

No, the help of a doctor, or even number of doctors, would be best, but, hey, the world is not ideal.

But.. as far as herbal protocols, there are many - a few being more popular than most. Buhner's, Cowden's, Jernigan's, to name a couple of them. Just Google those names along with "Lyme," and you should be able to pull up what you're looking for. Sadly, I must warn you - your being in another country may yet again pose a problem, when it comes to shipping the products to you. Definitely check them out.

Buhner's might be the way to go. I don't know.

I really hope it's not Lyme that you're dealing with, or even something more serious, but it definitely sounds like it, as I said. Also, I forgot to mention earlier, the common tests for Lyme are often very inaccurate, so don't put much faith in them.

Anyway, much like my friend above me said, others will come along eventually and give you some more input, so just check back in a little bit, okay? I just want to apologize for not being able to give you more, better information. I'd really like to, but I'm kind of in the same position as you, friend, wanting to get healthy, but not doing such a great job at it.

Let's hope there's brighter days for us in 2016, eh?

~<3
Posted 12/26/2015 9:24 PM (GMT 0)
Corwin-the elisa is known for being unreliable. Depending in where you are I believe there is a good testing in Germany and the best testing we have in the US Igenex may be willing to ship you their test kit.

Having better testing would give you a better reference place to start treatment. In the new to Lyme section at the top you should be able to find the information on Igenex.
Posted 12/26/2015 9:54 PM (GMT 0)
Thanks! You are very kind!
I will read the notes, so In my country Bulgaria, there are no Igenex Test, so I must ask for Western Blot and hope to be positive.
Posted 12/26/2015 11:36 PM (GMT 0)
Hi corwin, welcome to our community!

The fact that you are a hunter, coupled with all those symptoms, it certainly could be Lyme disease you have.

There is also a lab in Germany called Armin Labs.

www.arminlabs.com/en/services

You don't have to go to Germany to be tested...here in Canada, some Lyme Literate Dr.'s are using Armin Labs to test their patients.

Is it possible to travel to another country? I do have a few names of Dr.'s treating Lyme in Romania.

If you're interested, send me an email. To do this, just click on the blue envelope under my name on the left.
Posted 12/27/2015 9:53 AM (GMT 0)
Hi Girlie, thanks for the information.
Yes, I can travel, so it`s not a problem, if you can give me names of doctors. Unfortunately I can`t send you e-mail - I tried several times.
Here in Bulgaria we have one man - he is not a doctor, but have a newspaper, and is telling that the chronik lyme is the curse of a mankind, and there are no autoimmune conditions - it`s all lyme. Unfortunately many people told that he is a cheater and he is wanting to sell his products - Samento and Noni. I don`t know....

Can I ask you also i forget to mention 3-4 more symptoms
The major problems starts after a surgery. Another wave was aslo after 7 days of water fasting. I`m doing this things to detox, but in the end of fast the immune system is very weak, so after the fast i start with the most neurological symptoms.

Constant yawning
Whole body shaking
Muscle twithing
trouble swallowing
trouble speaking
vivid nightmares
sleeping for 2 hours and waking up...
Tongue is feeling numb and burning
I see a lot of more floaters in eye - some are like bacteria shape

Did it sound like lyme, I`m so scared of ALS, I have a little baby...

P.S man, after reading all my symptoms from all posts I definitely have a problem.............

10x again for the help, you are doing great job here!!! In my country all the doctor told me you have anxiety and there is no lyme, lyme is cured after 2 week of doxy...

Post Edited By Moderator (Girlie) : 12/27/2015 11:06:45 AM (GMT-7)

Posted 12/27/2015 11:58 AM (GMT 0)

corwin said...

Elisa test negative for Lyme

I had 3 negative ELISA tests and i was very sick. They are useless. You need a WesternBlot (WB).

That's a WB that you can do in Bulgaria: www.synevo.bg/?s=borrelia&cat=11

Or you can send your blood to Germany: BCA Lab (www.bca-lab.de/) or Armin labs, as Girlie pointed out.

If you can travel to Bucharest i can give you the address of a specialized lyme testing lab that works with BCA Lab in Germany, so you'll get some blood results faster because they are doing some of it in Romania. You can email me if you need more info, click on the envelope below my nickname.
Posted 12/27/2015 3:45 PM (GMT 0)
Hello Corwin,

like mpost I am from Romania and we have a few LLMDs here.If you want you can contact me to inquire about them.

All the best to you.
Posted 12/27/2015 5:07 PM (GMT 0)
Hi Corwin,
Welcome to our community!! I'm so glad you found us.

From your symptom list, it looks to me like you are possibly dealing with quite a few things - I'm sorry, I do know what it's like to be really quite ill from these infections as I had them for 40 yrs before finally being diagnosed, finding a successful protocol and healed.

I'm not a doctor, but it looks like you might be dealing with candida (white tongue), Babesia (yawning), possible thyroid issues (difficulty in swallowing) - also because you have so many Neuro (neurological) symptoms, I would venture to guess that you have Lyme and Bartonella as well because when those two combine in the body, often more pronounced neuro symptoms show up.

Unfortunately, most doctors don't know how to treat these infections, think they aren't in their area and more. I'm in the US, yet in my state, they don't believe Lyme is here, even though every state that surrounds us has admitted that Lyme is an issue. It's just plain goofy how far people will go to deny that Lyme is in that area.

I would encourage you to start with detoxing, and building it up to where you are detoxing a LOT. The toxins that are created when the Lyme bacteria dies off is what drives a lot of our symptoms, so by detoxing, we help the body to remove the toxins and our symptoms are eased some. It can make the difference of feeling bad or feeling horrible.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", 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 this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

If the suggestions that you have been given to find a true LLMD don't work out, you can still treat with herbs. I wouldn't encourage you to waste your time with the Salt/C protocol, as that really only helps because of the large amounts of vitamin C that are taken during that time - and it only helps with some of the toxins as Vitamin C is known to be good at removing free radicals in our blood - but it won't treat these infections - and the large amounts of salt that are being taken are not good for anyone. Salt does not kill these bacteria, there has never been any evidence of this.

The two main herbal protocols that are used by those in this community are Buhner's: buhnerhealinglyme.com/the-protocols/

And Cowden's:
www.nutramedix.ec/ns/lyme-protocol/292-condensed-cowden-support-program-summary

Likely the best news is that you don't have to be all on your own while treating these infections - we are here to help the best that we can!!
Posted 12/27/2015 6:09 PM (GMT 0)
Corwin - I edited your post to remove your email address. We can't post them as it will attract spammers.

I wrote it down before I deleted it...and will send you an email shortly.
Please reply to it and let me know you received it.

Also, here's how to enable your email option:

- Click on "My Profile'
- Click on "Edit Profile"
- Click on "Show my email.."
- Click on "submit"
Posted 12/27/2015 6:29 PM (GMT 0)
10x Again for the help.
I edit my profile, so you can see my mail.

I decide to do this things

1. Check for celiac/gluten untolerance and Myastenia Gravis
2. Make the westen blot test and if it`s negative, i will trip to Romania to meet LLMD
3. Definitely I will make another EMG in the tongue and paraspinal muscles - to rule our ALS ( I know it is rare to have bulbar onset in 30`s...) I`m really scared of this option....
4. I start with buhner protocol ASAP - just to find products. I have samento, but will search for the others
5. Stop this Vit c / Salt protocol - I make it 10 days and no result, just + 2kg from the salt in blood flow

about the detox - I start also ASAP. I also stay 1 day in a week only on water, it helps a lot.
Thank again for the support. I hope I can beat this animal....

Just another question - They discovered in me Helicobakter Pylori, a take 2 antibiotics for 10days and it have gone. But shortly after that i have migraine for 1 month( normally I don`t have headache). Can this migraine be Herx Reaction from the antibiotics ???

Just thinking.... I never remember to be bitten .... But always have scars from cat claws :)

Post Edited (corwin) : 12/27/2015 11:33:37 AM (GMT-7)

Posted 12/27/2015 7:56 PM (GMT 0)
It's good for peace of mind to check if you have gluten intolerance or myasthenia Gravis as well as ALS. I have to say those are a lot of symptoms, though, and I won't be surprised if it is Lyme Disease.

When I was undiagnosed, I was referred to a Neurologist - to rule out ALS and MS.
I was so scared sitting in the waiting room - and was praying that I had MS. You know you're feeling lousy when you are wishing for MS.

The Vit.C/Salt protocol - I've been on this forum (and also get emails from another support group) - for over a year and a half now...and I have not heard of anyone successfully treating with that protocol.

For detoxing, please add in one new one every few days...you need several methods to effectively detox.

Taking antibiotics for other ailments does often cause a here.

I never saw a tick bite or a rash....maybe it was under my hair...or the back of my knees....the nymphs are so tiny...that they are easy to miss...and many people don't get a bulls eye rash.
Posted 12/27/2015 8:15 PM (GMT 0)
Corwin - did you get my email?
Posted 12/27/2015 11:55 PM (GMT 0)
What abx were you on for hpylor?.it is a spirochette infection as well .
Posted 12/27/2015 11:59 PM (GMT 0)
Girlie, no I haven`t got an email.
For H.Pylory I dont remember the abx, I remember that oone can be solved in water..
Posted 12/28/2015 5:05 AM (GMT 0)
Corwin - I sent you another email..let me know if you didn't get it.
Posted 12/28/2015 7:46 AM (GMT 0)
Yes Girlie, 10x a lot.
I am from Varna, so Constantsa is 140 km away- it is not so far.
Forte bine! Multumesc
Posted 12/28/2015 1:45 PM (GMT 0)

corwin said...
10x Again for the help.
Just another question - They discovered in me Helicobakter Pylori, a take 2 antibiotics for 10days and it have gone. But shortly after that i have migraine for 1 month( normally I don`t have headache). Can this migraine be Herx Reaction from the antibiotics ???

Careful with the H Pylori, i was misdiagnosed with H Pylori before the lyme diagnosis! What test have you done ? If you have done the UBT test, then that will be false positive if you also have lyme. The stool h pylori test is more reliable. Mine was negative, i repeated it 3 times... Nevertheless because of the positive UBT the dr decided to give me 10 days of clarithromycin and amoxicillin. This is when i experienced the first herx (in my case it was trouble breathing, palpitations and tachycardia). Yes that headache of yours might be a mild herx.

After 10 days of H Pylori treatment i waited for one month and repeated the UBT test , the dr expected it to be negative and it was 4 times bigger than before antibiotics (!!!) So the dr was completely puzzled she told me, "you have something else, i have no idea what is this"...

All my stomach pain disappeared after the Bartonella treatment (rifampin and levofloxacin for one month).
Posted 12/28/2015 2:00 PM (GMT 0)
I don`t know what is UBT test ( English is not my native language, so sorry if I make mistakes)
They take a biopsy from the stomach and find H.Pylory there.
My headache was not mild - a have a massive migraine type headache for 1 month, it was sooooooooo bad..... I never have a headache before - only for 1 or 2 hours maximum and 2 times in year...
Today Celiac and Ana Screening come back negative.

So, I`m waiting 20 days for Western Blot.
Posted 12/28/2015 7:08 PM (GMT 0)
Why are you waiting 20 days?
Posted 12/28/2015 7:50 PM (GMT 0)
Тhey take blood and I wait 20 days for the results.
Posted 12/28/2015 10:10 PM (GMT 0)
Oh! Okay, thank you for clarifying!!
Posted 1/2/2016 11:00 AM (GMT 0)
Hi and happy new year to all:)
Wish you to beat the beast :)
Just some questions :
I still wait for the western blot test but i decide to start buhner protocol. I buy the cats claw and Polygonum cuspidatum(resveratrol), but i cannot find Eleutherococcus senticosus. Is Eleutherococcus senticosus so important for cure???
Posted 1/2/2016 4:33 PM (GMT 0)
Corwin, I am not taking Eleutherococcus and I am feeling better.

However, each of us are different and I may not need it and you may.

Eleuthero is used for immune remodulation in Buhner's protocol along with cordyceps mycelium (which is a mushroom) and withania somnifera (ashwagandha) and glycyrrhiza (licorice).

Please research each one for side effects before taking and watch for any symptom.
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