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» LymeNet Flash » Questions and Discussion » Medical Questions » Neurological Lyme disease active after 13 years?

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Author Topic: Neurological Lyme disease active after 13 years?
schnuddelka
LymeNet Contributor
Member # 8031

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It's been years since I was on here but I am seeking treatment again and have a question...

Three years after being bitten by two lone star ticks I was diagnosed with Neurological Lyme Encephalitis. I was treated by two llmd's. First with oral cipro by a doctor who really didn't know what he was doing. And when I had an adverse reaction he switched to minocycline again orally.

Then I switched Drs because he really diddidn't seem to know what he was doing and the new doctor put me on I VE Rocephin. I was on match for two straight didn't seem to know what he was doing and the new doctor put me on I VE Rocephin. I was on match for two straight months and Felt much better after that. So we stopped treatment and went on with my normal life and then Felt much better after that. So we stopped treatment and went on with my normal life and then four years later I was in the ER and the dr was shocked that I stopped treatment at all. He had a port placed and one dose of rocephin and told me to follow up with my llmd. Idid that and was on rocephin for three more months. I also had IV Benadryl and fluids during the herxes so I didn't have to go to the ER anymore when I herxed and got so dehydrated from throwing up so much. However insurance stopped paying for home health and the infusion shipments without telling me for three months. Needless to say I went into massive debt and owed so much to the bank that there was no way I could ever pay it all back. So I filed bankruptcy and the pharmacy and home health care would needless to say never work with me again.

I have new insurance now and it's got its own infusion service that it works with. I'm on my own when it comes to home health care but I think I remember how to change the dressing and do the rocephin and hydration alone, so I can handle that part of it all. My dad has a blood pressure cuff that's mechanical so I can do that by myself and I can go in to my Drs office for bloodwork.

My life situation is that I'm really really sick to the point that I'm bedridden for the majority of my life. I have neurological head pain all day everyday and can barely keep food down. I forget a lot when people tell me stuff and have atrophied to the point where everything I do hurts me so I stay in bed all the time. I have a one pound weight that I lift in bed but I get knots in between my shoulder blades and it's painful so I put two tennis balls in a sock and lie on that for like pressure points and that helps me keep doing the weights. That's the extent of my exercises that I'm able to do.

So now I'm about to get a mediport and start rocephin again and I'm going to keep doing mepron and fluconazall and Benadryl and zofran. And I'll start clindamyacin IV and clarithromyacin. And then oral Tindamax.

Nutrition wise because I'm on a dairy and gluten free diet I should snack on brown rice with different veggies steamed warmed up, boiled eggs-make a dozen and then put in fridge and peel one or two at a time. Guacamole and scoops or salsa and scoops. And fruit...oranges, apples, bananas, etc.

So my question is...Is it normal or typical that those medicines be taken and another port put in for IV medicines on a semi-regular basis for lifelong treatment of neurological Lyme disease? When not in treatment the needle is removed and simply flushed once a week. Then when needed it's accessed and on and on basically for the rest of my life. Labs, hydration, and IV meds for the rest of my life. Good news is that all the visits to the ER I don't have to push it to the point where I'm practically on my deathbed the hydration I can do at home and feel better sooner rather than later. The herxes we can manage better and home health really wasn't necessary for the most part for me. Just a dressing change and checking my vitals all of which I can do on my own.

I'm asking for a little feedback from anyone with CHRONIC NEUROLOGICAL LYME DISEASE. How are you treating your Neurological Lyme Disease and how are you living your life and how severe is it? PM me please if you have it, not the care giver-no offense-but I have questions about how you deal with the pain on a daily basis. That's my biggest problem or issue. I look forward to hearing from you!

-Schnuddelka 💚💚💚🍀💚💚💚 [group hug]

Posts: 158 | From Northern Wisconsin | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
derk diggler
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i hate typing but i would like to talk to you to find out what your neuro symptoms are,, trying to figure out whats wrong with me also,, ive been in the land of oz for 6 years now if that makes no since then were of no help to each other,, thnx for your time

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+++++++
do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment

Posts: 195 | From california | Registered: May 2011  |  IP: Logged | Report this post to a Moderator
shoeless joe
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There maybe a possibility that your gut has been destroyed from all the AYBX.

Maybe its not lyme,maybe its dysbiosis,yeast,

My gut is destroyed by atbx and the neuro symptoms are wicked and could easily be mistaken for lyme.

What happened when you take antifungals?Do you Herx on antifun gals?

Posts: 227 | From fairhaven ma | Registered: May 2015  |  IP: Logged | Report this post to a Moderator
Lymetoo
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So sorry to hear! Are you under the care of a good LLMD now?? I would say you can still RECOVER if you have the RIGHT care.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94977 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
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schnuddelka - I'm sorry to hear you are going through this. Your mailbox is full - please clear it so I can send you some LLMD names.

Also, please break up your posts into 2-3 sentence paragraphs, as there are people such as yourself on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this, click on the pencil/paper icon, make your changes, then click "Edit post". Thanks.

Posts: 8770 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Phoiph
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Schnuddelka...

There is hope!

There are also alternatives to a "lifetime of meds" as you mention.

I had severe Neurological Lyme, with encephalitis and coinfections for a hellish 8 years (5 of which I was homebound), but am 100% well and med free now.

You can read more on this thread...with more success stories toward the later pages:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=125201;p=0

Posts: 1568 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Carmen
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I believe that there is hope.

Personally I don't really believe in neurological lyme. If you have lyme you have it in your nervous system and brain. Some people have it in these places worse than others... and they call this neurological lyme, but it really is a misnomer in my opinion. You must assume that it is everywhere and treat accordingly.

It is most likely that you have severely damaged your gut with drug treatments and your immune system also. You must work to restore your gut health but you cannot restore gut health as long as you keep taking antibiotics.

There is a 99.9% chance that you have pretty severe candida not only in your gut but in your blood and brain. It can cause neurological symptoms too. I have seen it first hand in HIV/AIDS patients.

www.nutrasilver.com is a product that can help with candida without damaging the gut. It is way more powerful than most silver products on the market because it is 3,600ppm instead of the standard 20ppm. I strongly suggest that you move onto a Gerson like diet, with raw juices. Raw foods are the best for restoring gut health and juices are easier for people who have difficulty digesting salads. You may have to introduce it gradually, but work at it consistently. Google it.

I treated my lyme disease, Bart and mycoplasma with Rife therapy and we have an extensive thread on this topic and I have posted what I did there in the last few pages. http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/88778?

I did notice that even when I though that I was well into recovery I found lyme in my nerves 9 months into treatment. The addition of the correct rife frequency seems to have gotten rid of it.

I also had to treat for general parasites. Because your immune system is knocked down blood and intestinal parasites are a problem for lots of lyme sufferers I didn't have intestinal parasites but blood ones did have to be treated. I used a product called Clarkia by Barlow company.

MMS is supreme for large intestinal parasites but some people need to use a drug therapy also. MMS can also kill a lot of bad microbes in the gut that damage digestion. It can also kill lyme but it takes a very long time... but alas, all the treatments take a long time.

Posts: 802 | From USA | Registered: Oct 2013  |  IP: Logged | Report this post to a Moderator
Phoiph
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Carmen...

I agree that Lyme is always neurological to some degree (as it affects the entire system), however, some strains have more of an affinity for the nervous system than others, and can present with a different symptom picture.

For example, B. garinii, a European strain (which I was infected with), is particularly associated with neurological manifestations, including cranial nerve palsies and meningoradiculitis (Bannworth's syndrome). It is also highly associated with ALS, MS, dementia, etc., whereas B.afzelii, another European strain, has less nervous system involvement, but distinct skin manifestations.

I also agree with you that the gut MUST be healed to become completely well. (I personally wasn't able to tolerate raw juices, however. I used bone and meat broths.)

So...although we both became well using different methods (Rife vs. mild hyperbaric), the common factor is that the entire "body terrain" MUST be taken into consideration to achieve wellness...

Posts: 1568 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
schnuddelka
LymeNet Contributor
Member # 8031

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I can't reply to all of you. Long story short I've been in two hospitals, my grandmas and home but really sick. My llmd is atimant about putting me back in Lyme care so I got a port today and start treatment next week. I'm on abx back with my llmd despite the cost but I have atrophied to the point of 108 pounds even though my face looks puffy from anti fungal the "institution"/ hospital I was in laid it out straight. Be under a doctors care or die. So it's back to the round and physical therapy and therapist. My god an institution that is accredited needs to exist for Lyme and NEUROLOGICAL LYME DISEASE!!!!!!!!!!!!!!! Amen!

--------------------
When given lyme make lymeade!
A tick check a day keeps lyme away! [email protected]
Raising awareness by creating as many lymebassadors as possible!

Posts: 158 | From Northern Wisconsin | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
SacredHeart
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I tried to pm you schnuddelka. I just wanted to let you know that I'll keep you in my prayers when I do the rosary.

I know the disease hitting you this hard can't be easy.

--------------------
Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono

Posts: 595 | From Texas Crossroads | Registered: Oct 2014  |  IP: Logged | Report this post to a Moderator
   

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