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» LymeNet Flash » Questions and Discussion » Medical Questions » New symptoms? Neuro Lyme concerns and questions

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Author Topic: New symptoms? Neuro Lyme concerns and questions
Junior Member
Member # 26304

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Hello everyone. I'm new here, and I've tried sifting through all the info on the site to get some answers, but I'm really pretty lost.

My Dad has been diagnosed with Lyme and is seeing an LLMD in Missouri.

He has been suffering from chronic symptoms for 15-20 years, it's hard to know exactly when it started.

The most severe symptoms he had/has were neurological. For years, he had random feverish swelling in his lower extremities which were very painful.

Now that he has been diagnosed, he is on abx which have given him such strong Herx reactions that he has only actually been able to take them (without weaning on or off) for maybe a week out of the month and half he's been trying to take them. I think he's switched abx once, so he's tried two types.

Overall, he feels significantly worse than he has in the entire time he's had Lyme. For some things, he feels like it's obvious Herx reactions, but he's also had new symptoms emerge.

Two night ago, he was up all night with what my mom termed "convlusions." Every few seconds, he would jerk violently, then it would stop. This went on for several hours until he finally fell asleep around 4am.

My mom calls me crying often now because she doesn't know what to do. My dad is no longer able to work and feels worthless since he can't "provide."

He called me today telling me just how out of his mind he felt. He's paranoid, anxious, and absolutely pessimistic.

He told me he was unhappy that his doctor won't be straight with him. He said that his doctor is so convinced that "positive thinking" will make him feel better, so he doesn't really believe what his doctor tells him to do will help.

He thinks the doc is just overly optimistic and holding back. The doctor said that he believes my dad has Neuroborreliosis and that he should start IV treatment, which scares my dad.

Overall, I think my dad doesn't understand why he should even go through with treatment. He doesn't trust that anyone is telling him the truth. He said his legs don't feel like they even work right anymore, and he's scared he'll end up in a wheelchair or worse.

I told him I would always be "straight with him," and that I'd try to find answers. Even if they weren't pretty answers, I'd tell him. This is the only thing that has made him feel better. I feel soooo much pressure from both my parents to be the Lyme Savior, but I will do anything to help!

So I'm looking for information about Herxing and whether his new symptoms could part of the treatment. His idea is that if he's herxing and feeling worse, than he can handle "getting worse before he gets better," but if they are brand new symptoms, he must be getting worse overall. If he feels completely worse overall, why should he keep going with treatments?

For those who have Neurological symptoms and mind-altering problems, does it ever get better? Will he ever get his mind back? Even in part?

I hope this isn't callous to ask, but do people die from Lyme or become permanently debilitated? I just want to know the truth about all this. I'm very sorry if I don't sound very educated on the subject! I'm trying!

Posts: 3 | From Augusta | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
Member # 13172

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Yes the neuro symptoms do get better. The initial phase of treatment is always the worst!!

An important thing for your dad to do would be to detox as much as possible to reduce his symptoms. A warm bath with epsom salts and cool shower after will help. Also a good diet with lots of veggies and no processed foods is important. Milkthistle to help detox liver is helpful too.

Other detox methods are coffee enemas ( sounds gross but they work!), infra red saunas, and activated charcoal. I bought a cheap IR sauna on ebay for about $150 and it has been very helpful to me.

As your dad heals, the mind stuff will get better. For me, those were the hardest symptoms to handle.

I hope your dad feels at least a bit better soon! Its so difficult to handle this disease.


Posts: 95 | From michigan | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 24167

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Neuroborreliosis treatment requires you to get worse before you get better. The die offs can be painful and confusing. New symptoms will appear as dormant/cyst-form bacteria are brought to life. They will die down with continued treatment.

You do not necessarily need IV meds to get better. It helps to have meds that have good BBB penetration - diflucan for example does this very well and isn't even a traditional antibiotic, it's an antifungal effective against lyme and yeast.

I'd say find an LLMD your dad is more comfortable with, but Missouri isn't CT - you don't exactly have many to choose from. I recommend you continue to become educated and ask your dad's doctor pointed questions.

Babesia is a potential problem in neuroborrelosis. Just something to keep in mind - if it is present it will be very difficult to make last progress without treating it as well.

long road since 2010
abx got me over the hump
diet, detox, and herbs have got me to heal

Posts: 174 | From CT | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
Junior Member
Member # 26304

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twingirl, thank you for the encouragement! I will give them your detox suggestions. I know he has done a few things to detox, but I don't think he's explored all the options.

stork, it's good to hear that new symptoms are just a part of it. I talked to my Mom again, and I'm thinking you're right about finding a new doctor.

They live in Memphis, TN, so Missouri isn't the only option. Evidently, the doctor didn't tell my dad to start IV treatment, he just said "1% of my neuroborreliosis patients use IV treatment". This is confusing for them, and they couldn't tell whether that meant they should do IVs or not.

It sounds like that is the way the doctor works. My mom said that he has never given them a recommendation but has always presented options and then asked what they think they should do. I think this is horribly confusing and worthless for my parents. I can see why my dad is discouraged. So maybe a new doctor hunt is the future--someone who will take charge of the situation, give direction, and has a worthwhile bedside manner.

Posts: 3 | From Augusta | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
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He needs to start out slowly on the abx and ramp up over the weeks.
He WILL get worse to start while being treated. We all do.
But a few months in & he'll "feel"... & BE... healthier than he's been in... 15-20 years!

"Going IV" and buckling down for the ride might very well be the best in terms of how long he needs to be in treatment. But it can be $$$ ($10,000+) if he has 'no' health coverage.

Recovery can be very tough for someone who's gone undiagnosed for so long, but after he gets thru these coming months, his life will improve in all ways.. ways he can't even imagine now.

Some people can & DO become seriously disabled... even permanently debilitated. It depends a lot on the virulence of the 'Lyme' strain[s] they're infected with & thier own immune system's capabilities. (It SOUNDS as if His immune system's been able to keep his particular strain in check to varying degrees, as he's been able to work, etc.)

And, yes, some even die, often only as they see no (better) future... & no other alternative....

Posts: 1233 | From Dover, NH | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Karen Mc
LymeNet Contributor
Member # 23354

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Sending prayers for your dad, your family and yourself.

Try posting in looking for a Dr to hopefully find another in your area.

If ya'll do not feel comfortable with the Dr he is seeing definitely search for another...this is a very difficult disease to deal with and you need to have someone that is knowledegable that you feel confortable with.

Good luck and God Bless (:

Posts: 423 | From Virginia | Registered: Nov 2009  |  IP: Logged | Report this post to a Moderator

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