Does anyone actually get better or is this just a scam?

So I'm wondering if anyone actually gets better or if this whole Lyme disease treatment is all just a scam. I can't seem to get answers from anyone on any forums for Lyme or all the info is outdated. I just want to know if anyone truly gets better, and apparently there's confusing about what "better" means. I mean better in a sense that all your Lyme symptoms are gone and you return to feeling how you felt previous to infection. It doesn't seem to me like anyone really reaches that point...or they say they get better but are lying (one of my LLMD patients lied to my mom about getting better). I'm 19 and I think I got Lyme in April (which doesn't seem like a long time compared to lots of people on the internet) and I have been on treatment for two months and I feel WAY WAY WORSE. There's absolutely ZERO improvement and my vision has gotten a lot worse. My really only symptoms seem to be neurological stuff-brain fog, extreme dizziness, really bad vision problems, disoriented. I was in college studying engineering and now I don't know if I'll ever be able to return to school. The Lyme disease treatment seems like a big scam to me. My "Lyme Doctor" charged an arm and a leg just to see him, not to mention the costs of the medicine. What a joke it appears. Everyone has to pay so much to be seen by someone who "understands" Lyme..LOL. Seems to me like it's just a way for these LLMD to use terribly sick people to get MORE money. It's sad I think. So my question is does anyone actually get rid of the symptoms caused by Lyme (even neurological) or this whole "Lyme disease treatment", "LLMD", and "herb medicine" all just a load of crap??? I'd rather off myself than to live in a world where "doctors" exploit really sick people who are desperate for help.

Welcome catts123!

Sorry for the reason you're here but glad you found us.

Yes, some people struggle for a VERY long time to achieve wellness. However, there are success stories out there.

If you'd like me to dig through my 200+ links Lyme folder that includes success stories and share some here, please let me know.

Here's a link to explain what's happening in your body and why you feel worse during treatment:

www.tiredoflyme.com/the-herxheimer-reaction.html

If you think about it, accumulated toxins wouldn't feel good to anyone. The best way to get some relief is to remove those toxins and that will require daily detoxing. That same site has some great suggestions for detoxing:

www.tiredoflyme.com/detox-methods.html

Now, if you had symptoms before your diagnosis, that means you already accumulated toxins and things were exacerbated as a result of your treatment. It will take awhile for you to bring that toxin load down but you will feel better once you have a detox protocol in place that you continue to add to.

There are more detox suggestions in the "New to Lyme? Start Here!" thread that sits at the top of the forum. There's lots of other great information in there as well.

The reason "Lyme doctors" charge so much is because they are usually not getting reimbursed by insurance companies. Unfortunately, the controversies surrounding Lyme are very similar to what existed with AIDS in the 1980's. Doctors that follow ILADS standards are sometimes persecuted (ILADS = International Lyme and Associated Diseases Society). Much of it is political and patients suffer in the meantime.

That said, do you know if your "Lyme doctor" has had ILADS training? There are doctors/clinics out there without proven track records so it's really important to see a doctor that has one.

Do you have any of the infections that can accompany Lyme? As in, Bartonella and/or Babesia? Lyme rarely travels alone and having one or more coinfection can mean longer, harder treatment times.

What type of treatments have you had thus far?

No matter what, I do hope you're detoxing and, if not, will consider getting started.

Things will get better. It "just" takes time.....a LOT of time.

catts123 - I understand your frustration and the somewhat negative outlook. Its obvious the quicker you treat this, the better. I'm pretty analytical about all this, and seldom dive into any part of it without doing my homework, throwing MY hard earned money away is not to enjoyable as my sole financial provider.

I have met people in real life that were only sick for 6 months and then "cured" it in 6 months. But these people didnt even understand what the "big deal" was, so I dont think it hit them very hard to begin with.

Any deep infection tests the bodies ability to fight back, this has to do with out genetic makeup and immune system, which is why there are so many differences in people symptoms and length of symptoms and if this illness can start an autoimmune reaction on its own or not.

If you can find a regular Dr to help with "conventional" lab testing (you will need some of this), this will help costs.

#1 The immune system starts in the digestive tract, this is a fact. Many newbies have a digestive tract that is totally out of whack. If you have "gut" issues: Learn about food intolerance's, leaky gut and Candida, there are countless articles on this now, junk food has to go. This is what I first did, all on my own 8 years ago with online info. It kept me functional when main stream medicine failed me 100%., shame on them, but they did not know this at all only 8 years ago. Functional medicine has since helped me further in this direction.

You're young, possibly recently infected, so there is high hope.

You wont find many healed people here-they move on with life. Most here are the chronic long termers who might not have finally figured out what was wrong till many years. At that point it can do many things and gets complicated, which you have a good possibility of avoiding.

Thanks everyone. I'm not sure how to reply to one person but I am on doxy, cephalexin, vitamin c, grapefruit seed, zinc, coq10, activated charcoal, enhansa curcumin, and transdermal gluthonaoid. I take a detox bath every night and I walk on my treadmill every day for 25 minutes. From doing some research it' seems to me that using the iv is the best choice for neurological symptoms?? I really need to fix the brain fog issue because I need to get back to school soon or else I lose my scholarship. What is the best way to fix the brain fog that has helped for you guys?

Brain fog can be many things, the infections and what they do independently.

As an example, many hear have candida, leaky gut and low thyroid - all make brain fog. Its best to treat these individually along with the general infection eradication.

Just gooing after the infection wont fix these things all the time.

I have improved in this area from my all time low, but not completely, (I posted a similar post on this today). Optimal thyroid, and treating leaky gut and Candia fixed half of this for me. Now I'm greedy and want it all gone !

Proper thyroid has FT3 in the upper third of the range. The free T3 is needed to make T4. You cant just go by TSH. There is a lot of old thyroid posts here if this is new to you.

Thyroid can not be over looked and it is all the time. Infection affects the thyroid gland in many people. All cells, brain too, need thyroid hormone to function.

I'll try not to babble about this, since I usually do. If you have questions ask. Some others know thyroid here too.

catts welcome aboard i'm one of those who's only been infected for 13 months but have been fighting lyme and babesia for the last 8. the brain fog could be lyme or babesia. i have the brain fog as well and we're almost 100% certain its from the babesia.

while it can take a long time to get better and every person is different i have to wonder why after 2 months you're not seeing some improvement however slight considering you've only been sick for 7 months. most others would disagree but i've been sick as long as you and i either respond within a few weeks or not to a treatment that is effective.

to me 3 months is long enough if you aren't making any progress. you might also want to look into taking something that can get at babesia as well in case you have it. a cephlosporin like cefdinir or a macrolide like zithromax both have action against babesia.

in any event you should talk to your doctor about your lack of progress and maybe mixing up or adding something to current regimen. i would if it was me.

Trav had a good point about gene mutation testing. I thought that sounded wishy washy a few years ago. Then I did 23andMe , $100, and followed with another site , $40, that decoded all this info into english.

Wow, it explained some things. Then I followed some gene issues with conventional medical gene testing and , BINGO, I proved things to my "conventional non-believing Drs", their jaws dropped. One gene issue explained an ER visit that was almost lethal. I made them believers, and they were like "what is this 23and Me test again?". Some need proof, I gave them proof.

Recovering from infection and autoimmune is harder with gene detox issues, good to know if you have some, most have something wrong, not always a big deal, but sometimes it can be.

astroman said...
Trav had a good point about gene mutation testing. I thought that sounded wishy washy a few years ago. Then I did 23andMe , $100, and followed with another site , $40, that decoded all this info into english.

Wow, it explained some things. Then I followed some gene issues with conventional medical gene testing and , BINGO, I proved things to my "conventional non-believing Drs", their jaws dropped. One gene issue explained an ER visit that was almost lethal. I made them believers, and they were like "what is this 23and Me test again?". Some need proof, I gave them proof.

Recovering from infection and autoimmune is harder with gene detox issues, good to know if you have some, most have something wrong, not always a big deal, but sometimes it can be.

Sorry, but I just love it when we can teach even unbelieving docs!!

Many LLMD's will diagnose coinfections based upon what the patient reports with symptoms....either at the time of the first appointment or after the patient reports herx symptoms that are either specific to one infection or common to more than one.

Other LLMD's will trial certain meds that are used for particular infections and gauge the patient's response.

Please understand that healing involves a lot more than killing the bugs - that's really the least of it.

We need to rebuild our immune systems to not only help with our current infections but to prevent us from getting new infections.

We also need to support the organs that are under attack.

And, finally, we need to do things to reduce the inflammation caused by these infections.

Antibiotics are great at killing. Herbal protocols address all of the above-mentioned factors.

For whatever it's worth, my LLMD had me stop taking abx when my only remaining issue was mild peripheral neuropathy.....and I was to continue on an herbal protocol in the hopes of eliminating those final symptoms.

Well, after almost 6 months on Cowden, all I did was herx on occasion....but maintain the plateau I'd hit on abx.

It was because of some herxing I had on Cowden's Babesia-specific herb that I began to wonder if an asymptomatic Babesia/Babesia-like infection was impeding my healing from Lyme.

Because Cowden doesn't have a published Babesia protocol, I decided to switch to Buhner's protocols for Lyme, Babesia and Bartonella (because I'd not only learned that people can have asymptomatic Babesia infections but, also asymptomatic Bartonella infections....both of which can impeded healing from Lyme).

While I had some typical Babesia herxes and typical Bartonella herxes, the bulk of my herxes have been with Lyme symptoms.

I am finally improving.

Bacteria form biofilm with each other and they communicate with each other via quorum sensing. If you want to heal from one infection, it seems you need to treat for the major players (Lyme, Bartonella, Babesia).

After all, tick saliva is like a salad bowl....and it's more likely than not that we are dealing with more than one infection no matter what unreliable tests show.

For the record, there are over 100 strains of Lyme bacteria and the tests available for Lyme only check for one strain. Similar applies to Babesia and Bartonella - there are more strains out there than tests available.

I see no reason why you can't discuss other detox medicines with your LLMD. Everything listed in that link can be used by people taking abx or herbs....the person just needs to be cognizant of timing.

Finally, as a longtime thyroid patient whose care was grossly mismanaged until I learned about thyroid, I can't say that I'm comfortable with the thought that your thyroid isn't necessarily an issue.....unless you tell me that your TSH is less than 1.....and your Free T4 and Free T3 levels are both in the upper parts of their ranges.

If I've mentioned tests that you've never heard of, that's a sign the doctor who ran them doesn't understand thyroid.....and you might have an issue after all.

I will gladly show you how to interpret your thyroid test results if you share them here. (you'd need to include the reference ranges for each result because they vary from lab to lab and your results can only be properly interpreted within the context of your lab's ranges).

And, if you haven't had Free T4 and Free T3 testing done, I hope you'll consider getting it done.

Healthy thyroid function is a big piece of the healing puzzle.

Free t3: 3.9 range is 1.8-4.6
Free t4: 1.6 range is .7-1.8
TSH: 2.55 range is .4-5.5
I had this done in August. I am seeing my LLMD on the 24th so hopefully I can figure some co infection stuff out.

Howdy Catts. Sorry you are a lymie too. It suxs. I was bit the end of April and I did the antibiotic thing and a few symptoms went away. Now I am doing Buhner's protocol.

I got to the place where all I did was cry because I thought I would be like this forever and never get well. I was so afraid.

Now I am committed to beating this sucker. It won't be a quick and easy fix, but I am a stubborn ole grandma. Ole, not old. lol

I refuse to spend money on a test for co-infections that may be inaccurate. I did that once with LabCorp for an ELISA test. Dumb. I will take herbs for it all if I have to, just one at a time and slow and easy. I will be that tortoise that wins the race.

You be strong and hang with us. Everyone here is so nice and knows so much. They have lived it!!

Hugs,

~Annette

Activated charcoal will pull anything that's in your stomach and usher it out. That is why we need three hours (some Dr.'s say two hours) - on either side when we take it.

It won't take the antibiotics out of your blood stream.

I've had chronic Lyme for a long time. It is tough to beat. I would have loved to have caught it early when I was your age though. I think I would have had a much better chance at beating it.

One thing I did figure out to do even though I didn't know I had Lyme was detox. For me using the sauna was a lifesaver for getting rid of the brain fog. I think a lot of the neuro stuff is related to inflammation due to a build up of toxicity. I haven't found anything better than 30 mins in a regular or infrared sauna for quickly regaining clarity of mind. Sweating is essential though, so it might take a few sessions before your body sort of adapts to the heat and starts detoxing by sweating.