What is your take on Lyme as a diagnosis for ongoing neuro issues?

[freefallin]

I've been experiencing progressively worsening neurological issues for the past about 9 years of my life. The first issue I experienced was a loss of my sense of taste; food suddenly tasted like nothing one day when I was 14 years old. Then I started having issues pronouncing certain words, dizzy spells, issues with balance, trouble remembering words, a near inability to concentrate, difficulty processing new information, ringing in my right ear, excruciating 24/7 headaches, frequent urination (like every 20 minutes), brain fog, hand and tongue tremors, sensitivity to certain types of lighting, and a few other issues. Doctors can't figure out what's wrong with me. They usually just see that I'm 23 years old and conclude that it's all in my head because I'm too young to be seriously ill. Out of desperation, I went to an acupuncturist/herbalist, and he's telling me that my symptomology sounds consistent with Lyme Disease. I've looked into Lyme in the past, but I gave up on considering it as a viable option because it seemed like every symptom in the book was supposedly associated with Lyme kind of how you can attribute just about anything to anxiety, depression, or fibromyalgia.

Looking for opinions essentially. Is the talk about Lyme Disease in the alternative medicine sphere hype, or is there some validity to it? He told me that getting tested for it won't necessarily rule out  the possibility of Lyme because the test yields a lot of  false negatives and positives.

[mojogal]

Throwing in my 2 cents, everyone above said it so wonderfully.
I am one of those extreme cases where 18 mos ago I couldn't walk, had periods of blindness, the brain lesions etc. if it weren't for the long term antibiotics, who knows where I would be now. I have improved greatly can walk and think ( sometimes, lol) and I can actually see a great improvement in my co-infections too.

I have heard of someone dying but not as a result of LTA, but due to the fact that she started treatment so late that it damaged her heart.
It is very confusing but if you do as much research as you can, join as many support groups as you can, it could be helpful in weighing the risks involved.

Wishing you luck in whatever you decide.

[wonko]

"I decided to follow in the footsteps of people who had gone before me...people who had what I had, got diagnosed, and got better. I also decided to believe the doctors who were actual practicing physicians who treated patients over the long term, rather than the doctors who sat in their ivory towers striving for fame and fortune as an expert in a "new" disease."

I couldn't say it much better than that!

I'm very late to this conversation.  I also had a tough time believing I could have Lyme/co-infections.  I saw a slew of doctors while seeking a dx, and though I was in an endemic area, I was always told I couldn't possibly have Lyme because I'm an indoors person and because my ELISA test was negative.  

Just as said in the quote/above post, I had to consciously decide to pursue Lyme based on what I read and learned about.  Working with an ILADS LLMD proved to be what I needed and I'm so much better now, and glad I got over my stubborn and skeptical stage.

I'd also say that for me the risk of long-term abx was low relative to the risk of continuing to not treat my disease.  I was a little older than you when I first got very sick, I was 27.  But I already had visible scarring on my brain (so-called "lesions" on MRI, like what is seen in MS) and I also had heart palpitations and joint damage.  Lyme and co-infections can do your body a lot of harm and that should be taken into account when you weigh the risk/benefits of treatments.  I'm not medically trained, just throwing out my 2 cents.

Best of luck making your way through this part of the process.  I hope you find answers and treatment.

[Ricobord]

The IDSA docs like to quote stories of deaths from Lyme Disease while accusing LLMDs of various things. But from my reading, such deaths are extremely rare. In one prominent case I read about that triggered a lawsuit and complaints, the woman died of a stroke, which could just as much be caused by the Lyme as by the abx. I truly can't remember a case I've read about that was directly a result of treatment.  All the cases I have read of deaths were caused by primary or secondary symptoms of Lyme, or by secondary conditions, such as stroke or pneumoniae.

NOTE to people reading this who might be freaking out on this subject... Lyme doesn't usually kill people. It can, but it usually just makes you miserable. Far more people die from the flu or pneumonia than from Lyme.

People occasionally die from antibiotic treatment for hundreds of other diseases, but we don't hear about them. The CDC website says that 14,000 people die every year from c.difficile caused by antibiotic treatment, mostly the elderly in hospitals or nursing homes.  I don't hear anyone saying we should stop giving the elderly in hospitals or nursing homes antibiotics for their infections.  Doctors don't bat an eye in prescribing a year or two of antibiotics for other infections.  Only in relation to Lyme Disease does the IDSA issue dire warnings about "dangerous" drugs.

It is hard to know what to do, especially when the so-called experts who are supposed to guide us are instead, denying our disease while they go after the doctors who will treat us.  

I encourage you to read as much as you can absorb.  I decided to follow in the footsteps of people who had gone before me...people who had what I had, got diagnosed, and got better. I also decided to believe the doctors who were actual practicing physicians who treated patients over the long term, rather than the doctors who sat in their ivory towers striving for fame and fortune as an expert in a "new" disease.

[JackieCalifornia]

Long term antibiotics do have some risk, but so does not treating what ails you.  I haven't seen any reports of fatalities directly related to L/T antibiotics, but that doesn't mean they aren't out there.  Where did you find that data?

I had some problems with long term abx, but it was not directly related to the abx themselves.  And I would do it all over again.  The only other routes I know of are herbal and Rife, and those are (to my nonmedical understanding) less certain to cure than antibiotics.

It's hard to know what to do; I certainly understand.  Esp when the docs can't agree among themselves!  And even worse, to be dealing with a medical community in disarray AND an infection that mucks with one's brain and thought processes and emotions.  Aggh.

Hang in there --

[freefallin]

I am still doing the herbal thing, for the record. My acupuncturist said we can avoid anything that contains aconite, and he doesn't think he would have ever used any of those formulas with me anyway.

[freefallin]

I appreciate the concern; I'm just not really sure of what I want to do right now and am trying to sort a lot of things out in my head. I've also read that being on antibiotics long-term has been fatal for some people, so I'm not really convinced that I want to go that route yet.

[freefallin]

I'm not sure.
I know the potatoes are no-goes because they're in the nightshade family, but I have to do more research to find what's so bad about the nightshade family. I think bananas and several other fruits are forbidden because of their glycemic index, but I would need to read the book this diet is based on to understand the rationale behind eliminating certain foods and incorporating others.

[mojogal]

Gottcha,
We just don't want to see you wait and get worse. The longer you wait, the harder to cure.

[JackieCalifornia]

Why no bananas and potatoes?

[freefallin]

He wasn't trying to tell me that changing diet would cure me of Lyme (which he never said I definitely have). What he was saying was that, if I'm not comfortable taking herbal formulas, we can still work on my diet, which may help at least lessen some symptoms and which would be better than doing nothing at all.

[mojogal]

You can always get the grant and do the phone consult route.
I don't believe that changing diet will cure you of the Lyme, if it was that easy we would all have done it.
Just think about it.....

[freefallin]

Thanks for the suggestion, Bob. I don't think the symptoms of toxoplasmosis sound that consistent with my symptoms, but who knows! They're pretty nonspecific just like the symptoms of all of these other conditions that affect the nervous system. Why can't everything be more clear cut?!

I saw my acupuncturist yesterday, and he didn't sound as confident that I may have Lyme. I mentioned to him that I wasn't comfortable taking aconite-containing formulas, and he said if I wanted, we could nix the herbal route all together and just focus on dietary changes and acupuncture. I told him that, if I have Lyme, that won't take care of it, and he was just kind of like, "I don't know if you have Lyme." He also said that he didn't think it was really necessary to get tested for it since he's seen many herbalists treat people successfully with Lyme-like symptoms who didn't have a formal diagnosis. He also kind of reinforced what ILADS told me; we live in a very non-progressive state, so finding an LLMD is pretty much not going to happen. He has me on a very strict diet protocol now. So many of my favorite healthy foods like bananas and potatoes are forbidden. :( I'm willing to try it, however.

[mojogal]

Good one Bob forgot that.

[nutrinut_bob]

Something else to be checked for is toxoplasmosis.  A lot of people, up to 30% here in the US, already carry it.  It infects the central nervous system and doctors look for it about as much as they look for lyme.

[mojogal]

I am just glad there is such a program now, there wasn't any not too long ago.
Sometimes it's better not to watch those things now, until you are emotionally stronger. It took me a while before I could. Sometimes, I still can't.
Good luck with the grants and keep us posted.

[freefallin]

Very sorry for the delayed response. I worked for 13 hours straight on Sunday and spent most of today depressed/freaking myself out reading up on Lyme and watching YouTube videos of patients who have it. This one girl sounded SO much like me, I could have sworn she WAS me.

Thank you for letting me know about that! It's definitely something to look into and consider applying for. I feel really awful that they're only willing to help those under the age of 25, however. :(

[mojogal]

I wanted to let you know there are funds for young adult Lyme patients. The first one is called lymetap. They give you funding for igeneX labs. Once you have the DX you can go to the limelight foundation that helps with grants to see an LLMD. I saw that you are 23 and their cut off is 25.
I was looking for funding for myself because I am on disability but I guess us older folks don't count :(
I hope this helps you.

I wrote the same thing on your other posting so you wouldn't miss it.

[freefallin]

Maybe. :) Getting to NC isn't a possibility for me right now anyway, but if it becomes one in the future, I'll see what they're willing to do.

[JackieCalifornia]

You could call the doc's office and explain your financial situation (just as you do above) and ask for a discount or extended billing or something.  If the doc can swing it financially (keeping a doc's office running is not cheap), s/he might do it.  And LLMD above all understands what Lyme patients are going through.  

'Nothing ventured, nothing gained.'  Give it a shot.  I would.

[freefallin]

I suspected that was what you meant! I'm glad you cleared that up. :)

[freefallin]

:)

ILADS mentioned that the nearest LLMD to me was located in Raleigh, NC. I think I found the doctor they were referencing. He charges $700-something for the initial visit, so if those are the rates most LLMDs typically charge, then seeing one is definitely out of the picture for me; that's half of what I have in my bank account. So I guess my only real option at the moment is the herbal route...if I even have Lyme at all, who knows. If the guy I'm seeing now says he doesn't have any alternatives to the aconite-containing formulas, then I'll look into someone else. I don't know that it's the right path for me, but it's the only one at the moment.

[Ricobord]

I totally understand on watching the documentary. I didn't feel I could do it until I was about 2-3 months into treatment and had started feeling a bit better.  The good news is the patients featured get better!

Take it one step at a time. We know how you feel as we have been there. It is a lot to take in, especially after feeling crummy for so long.

[JackieCalifornia]

I was just scrolling through the earlier messages in this thread and noticed a post I made that has an error in it:

"the longer you've been infected, the less likely the standard W.blot and ELISA tests are to come back as a false negative, meaning you're infected but the tests are negative.  Thus the usefulness of the IGeneX PCR test."

The error is in the first line.  It should say "the longer you've been infected, the MORE likely the standard W.blot and ELISA tests are to come back as a false negative. ...."  Sorry for the confusion.

[JackieCalifornia]

I hear you about Under Our Skin.  It is a bit over the top when one is all tooooo close to the really bad days of living with Lyme.  When you're well, it might be worth watching, to see how far you have come.  

About juggling the docs etc.:  juggling is indeed the right word.  It's a hassle and confusing and expensive, but navigating among various docs (mean to include all healthcare providers) is sometimes/often part of the deal.  Trying to decide on a course of action before hearing out each of the different possible courses of action produces anxiety of its own, and anyone with Lyme has enough anxiety to fill a football stadium.  Been there.

Moving back and forth between various docs until you have enough data from each of them to decide on a course of action may bring peace of mind as you go forward.  Everyone's situation is different, but try not to force yourself into a premature treatment decision if you really are not sure.  There is always some lingering doubt, just because Lyme is so strange and misunderstood, so going through the process of choosing a treatment route is very important not only for your health itself (duh) but also for your peace of mind, which is a huge part of Lyme too as you already know.

Be kind to yourself, and proceed methodically so that you have a maximum of confidence that you are taking the right path for you.  It was easier for me, because I went through 20 docs to even get a diagnosis of Lyme, and at that point, I knew that my LLMD was the guy for me because I had already cycled through all the other possibilities.  But the path is different for everyone.