Lyme neurological symptoms?

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Floho
New Member


Date Joined May 2018
Total Posts : 8
   Posted 5/15/2018 2:50 PM (GMT -6)   
Hello everyone, I am 21 years old and experiencing a variety of symptoms. It started out with a headache that didn't go away then right side leg and arm weakness, muscle twitching all over, sensitivity to light and sound, blurry vision, random muscle pain from time to time, depression, anxiety... Not to mention fatigue which I have been experiencing for years, but never really thought anything of it. The headache went away after a month, which got me more worried it could be something more serious than Lyme like a MND.

Neuro suspected MS but brain MRI was clear. I was positive for Lyme with the ELISA test which i know is not accurate. Went to the infectious disease doctor, where they took my blood again and even did a lumbar puncture. Blood was positive again with high amounts of antibodies, lumbar puncture showed very little antibodies. Although I had high amounts of antibodies in my blood, they said the results are very uncommon for Lyme disease which leaves me confused. They said I will get antibiotic therapy in a few weeks if further testing doesn't show I have MS and the spinal fluid tests are 100% completed.

Don't ever remember having a rash, did have ticks before in my life tho. I am from Slovenia which is also one of the leading countries for Lyme infections in Europe (even in the world i think).

If anyone has had a similar expirience or is willing to give an opinion, I would very much appreciate it. smile

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 5/15/2018 3:16 PM (GMT -6)   
Hi Floho - welcome!

Checking for Lyme with a spinal tap isn’t a good test. I wouldn’t recommend anyone get the lumbar puncture to test for Lyme.

The Lyme antibodies in your blood is all that’s necessary to back up a clinical diagnosis based on the presenting symptoms.

You should find a LLMD for treatment - as a regular dr or even an ID Doc will most likel not treat you long enough or with the right combinations of antibiotics - and there are coinfections that will need addressing.

I don’t think I have any options listed for a LLMD in Slovenia - but email me and I’ll check my list - are you able to travel to another country in Europe?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Floho
New Member


Date Joined May 2018
Total Posts : 8
   Posted 5/15/2018 3:59 PM (GMT -6)   
Hey thanks for the answer, yes i found out that a lumbar puncture for Lyme is a bad idea only after I did it... If I did my research before I would have surely refused to do it. I have read an article about a LLMD in my country, as far as the article states he really stresses that people with Lyme infections are too often misdiagnosed with MS and such. I am surely going to get in touch with him in a few weeks after i do my last tests my Neuro ordered to rule out MS or anything else if needed. I did discuss some treatment options with the infectious disease specialist as I have had allergic reactions to certain antibiotics as a kid, but as you said they probably wont treat me long enough.

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1351
   Posted 5/15/2018 4:46 PM (GMT -6)   
When did this start? Waiting a few weeks is literally the worst thing you can do if it's a new infection as the window for successful treatment is small

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 5/15/2018 6:47 PM (GMT -6)   
Psilociraptor said...
When did this start? Waiting a few weeks is literally the worst thing you can do if it's a new infection as the window for successful treatment is small


I assumed it was chronic - with all that testing - couple blood tests and a spinal that’s already been done and a specialist appointments.

But good to ask anyway, Psilo.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Floho
New Member


Date Joined May 2018
Total Posts : 8
   Posted 5/16/2018 3:04 AM (GMT -6)   
The symptoms started almost 2 months ago.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 5/16/2018 2:44 PM (GMT -6)   
I wouldn’t waste too much time getting on treatment.

You’re still fairly early in the game.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 5/16/2018 3:18 PM (GMT -6)   
Floho said...
The symptoms started almost 2 months ago.


treat early and aggressively, get well and cured. you have this opportunity and even if u probably don't have more than 50% chances, i'd play that game any time i'd have the opportunity, given the alternative you can see we experience here: lifetime of suffering.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 5/16/2018 3:53 PM (GMT -6)   
Wait. You tested positive twice for Lyme?

Well then there you go. Don't let doctors in the main stream medical community that have been basically coached/brainwashed to dismiss lyme, confuse you.

Take the few weeks of ABX treatment. Find an LLMD so you get longer ABX treatment and/or start herbs (the latter you don't even have to wait to start).

Thanks.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 5/16/2018 4:10 PM (GMT -6)   
I agree with dacarte.


Don't let 'them' stall you out too much longer with oodles of testing...and then tell you that you don't have lyme - 3 months down the road.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

B99
Regular Member


Date Joined Sep 2016
Total Posts : 95
   Posted 5/17/2018 2:28 AM (GMT -6)   
Hi Floho. I don't want to scare you but here is how it went with us: My daughter was 19 when she was bitten and exposed to Lyme, Babesia, Bartonella. We didn't get a diagnosis for some time ... she became very ill as a result: Neuro Lyme. She's been living at home since 22 and in treatment for almost 3 years now, and thank God is recovering. That includes 8 mos of antibiotics orally, 4 mos of infusion antibiotics 2 times a day with a Hickman catheter through her rib cage and into her heart. Pharmaceutical grade herbals, diet, therapy, etcetera.

Please, don't take risks with Lyme. Find a good doc and treat as soon as possible. The key is in timing and treating for long enough, early in the infection exposure.

Floho
New Member


Date Joined May 2018
Total Posts : 8
   Posted 5/17/2018 2:25 PM (GMT -6)   
Thanks everyone for the answers, I will do my best to get on antibiotics and get an appointment with the LLMD asap. Its really frustrating when doctors delay diagnosis just because I don't show "typical" signs of Lyme...

Lymebgone
New Member


Date Joined May 2018
Total Posts : 2
   Posted 5/22/2018 2:10 PM (GMT -6)   
Ilads.org can help you find a LLMD in your area... The Lyme literate medical doctor will know how treat Lyme and anything else you may have with it. You should ask to be tested for co-infections, reactivated viruses and gene mutations. Geez, the treatment and care you received is so typical.
Well wishes for you😊
4years "Lymed-up" with Lyme Bb, mycoplasma, EBV, CMV and POTS

G-Ju
Regular Member


Date Joined Apr 2018
Total Posts : 50
   Posted 5/22/2018 8:58 PM (GMT -6)   
When i first fell ill, I went to my PCP, and she never even suggested I be tested for Lyme, and I live the woods of Maine. It took a trip to the ER for a doctor to ask if I may have been bitten by a tick. Oh yeah...a few. I even pulled one off my head tonight. Ugh! Crazy, but, Lyme never crossed my mind. The ER blood tests came back negative, but I was sure I had Lyme and not MS, which is what my PCP was leaning toward. She sent me to a neurologist. The neurologist wanted me to have an MRI, but I cancelled the appointment. I figured I'd do that as a last resort, if I didn't have Lyme.

My PCP saw the Lyme results from my ER visit and did one additional test, which also came back negative. However, I did have three Reactive Bands, but that didn't meet CDC requirements for a diagnosis. I had to have 5-10 to be diagnosed with Lyme. After that, I sent my PCP an e-mail BEGGING for some kind of antibiotics because I knew I had Lyme. Seriously... I said, "I'm BEGGING you to help me." She did. She started me on 200mg of Doxy a day. After two weeks, I was starting to feel some relief. Ahhhh....

While I was on the Doxy prescribed by my PCP, I found a Naturopathic Lyme Literate doctor. At my first appointment, while I was still on the Doxy, I had some additional blood tests done. Sure enough, I have Lyme. My LL doc has increased my antibiotics since then. Tomorrow, I'll find out the results of my DNAConnexions urine test, which will show what exactly is going on in me. The test results took about six weeks to be returned to my doc. Thank heavens I got to a LL doc. I now know I'm in the hands of someone who truly understands Lyme Disease.

Don't waste time. Get some antibiotics from who'll give it to you. Then, go on a search for a Lyme Literate doctor.

Good Luck!

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 5/23/2018 2:55 PM (GMT -6)   
G-Ju said...
When i first fell ill, I went to my PCP, and she never even suggested I be tested for Lyme, and I live the woods of Maine. It took a trip to the ER for a doctor to ask if I may have been bitten by a tick. Oh yeah...a few.


my dentist told me straight she does not believe lyme disease exists... not even the acute one. lol .... i immediately told her what i learned from Dr. Steven Phillips: "lyme is not a religion, u do not have to believe in it or not".

I never came back to that dentist for a followup ...

G-Ju
Regular Member


Date Joined Apr 2018
Total Posts : 50
   Posted 5/23/2018 7:10 PM (GMT -6)   
my dentist told me straight she does not believe lyme disease exists... not even the acute one. lol .... i immediately told her what i learned from Dr. Steven Phillips: "lyme is not a religion, u do not have to believe in it or not".

LOL

My PCP told me that when they go to medical workshops/meetings to discuss Lyme with LLMD's, they always end up in screaming matches. It's difficult to understand why they can't see people NOT getting well. They continue to order a multitude of other tests, and their patients get negative results over and over. It can't be Lyme because they don't meet CDC requirements. There's nothing wrong with them, but they don't function well in everyday life. Hmmmm Weirdest thing ever! Maybe one day, this will change.

Floho
New Member


Date Joined May 2018
Total Posts : 8
   Posted 5/27/2018 7:19 PM (GMT -6)   
Its 2am as im writing this, cant even fall asleep, having these weird itching/crawling sensations, still twitching like crazy, got a sore throat over the weekend(its not even cold here, didnt even go outside)...

Have another blood test tomorrow like what the hell, probably gonna be positive for the third time, what more do they want? Neuro totally dismissed MS, did the usual exam again and found nothing wrong(reflexes etc...), but 1 month ago the exam was abnormal lol.

And here I am having to wait another 10 days for my appointment where they will decide if they put me on antibiotics or not...

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2293
   Posted 5/27/2018 7:58 PM (GMT -6)   
Hello Floho,
I would try to get to an llmd or good Lyme clinic right away. 10 days waiting for a decision about ABX is wasting crucial time to stop the infection from progressing and taking hold.


Do you have access to a natropath or herbalist? You can get Stephen Buhners"Healing Lyme" 2nd edition and its has lots of information on Lyme and herbals used for healing.


Meanwhile are you able to take warm Epsom salt baths and drink water with lemon juice to help your body get a head start on detoxing.

Start to build your immune system up as that will help to fight the infections.

Eat healthy, no sugar , eat gluten free.

Please keep us updated....take care

claude783
Regular Member


Date Joined Sep 2013
Total Posts : 161
   Posted 5/27/2018 8:33 PM (GMT -6)   
I use light for my treatment, however, what I am about to mention might be of use

In the past I use to use Vet medications. If they aren't to restrictive in your country, you may be able to purchase vet medications and treat yourself.

The same drugs used on our pets is the same drugs we are given. The last injectable antibiotics I tucked back even had procaine in it.

In the past the injectable antibiotics didn't have the pain killer, so stung like all get out.

So, see if you can purchase animal supplies. Tuck some back and God Bless
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