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Why I still experience symptoms after successful treatment? Anyone in the same boat?

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Posted 1/17/2017 3:19 PM (GMT -5)
My story with Lyme disease is quite lengthy but I will just try to include the most important parts.

In 2010 I began having neurological symptoms,such as tingling or numbness in both hands or legs at the same time. In 2011 I began losing vision in one eye, had an emergency visit at the hospital with an eye doctor who diagnosed me with Optic Neuritis. He said this is often a first symptom of MS.

My symptoms continued, had on and off numbness, vision was on and off. I had an MRI done in 2015 which showed a few brain lesions and was diagnosed with MS. But I was feeling so unwell, I felt like I was going crazy. I felt like I was out of my body-floating, frequent heart palpitations, feeling faint, dizzy, random tremors, shakiness/vibrations in body, air hunger,just to name a few. I felt like something wasn't right and got tested for Lyme. I live in Europe, and was able to find great treatment options. I took some antibiotics, plus ozone IV therapy. They have very sensitive tests to check for presence of borrelia burg. in the body and each month, the level of bacteria was dropping until it reached 0 in mid December.

I took my last Ozone IV on Dec 29, 2016. The problem is, I DON'T FEEL ANY BETTER. During my disease I suffered mainly from NEURO symptoms. Since January I only had 3 GOOD days, when I felt normal again. I got excited but nope my vision just got worse (like in the past), my whole body feels weak, my stamina is poor- it was actually better during treatment, even tho i had bad days. I was able to walk long distances without getting tired. I was optimistic that I was getting my health back.

Now that I no longer receive antibiotics or Ozone I began to feel weaker as if I never went through this extensive treatment confused The test showed no more presence of Lyme. I understand that by having the bacteria in my system for over 12 years has done LOTS of damage to my CNS but I've heard my stories where people Get better with treatment- for example people misdiagnosed with MS, wheelchair bound, begin walking again. In my case, I noticed no improvement in my NEURO symptoms. I know it's only been a few weeks since I finished treatment...

BUT is there hope that my body will recover? sad
Posted 1/17/2017 3:38 PM (GMT -5)
Welcome to our community, Janecb.

I'd like to ask you a few questions:

- How long were you in treatment?
- Were you treated for any co-infections...Bartonella...Babesia?

What did your Dr. say about the fact that when you stopped treatment, you still had symptoms?

Yes, there IS hope that your body will recover...but only if you treated long enough to put it into remission.

We encourage all new members to look through the thread at the top of the page title: 'New to Lyme?..Start Here!" It's packed full of useful information.
Posted 1/17/2017 3:43 PM (GMT -5)
I was in treatment for 6 months. I didn't stop treatment,my LLMD said I don't need to continue since the bacteria is out of my system.

Yes I had one co-infection..Mycoplasma. It has also been treated and is no longer present in my system.
Posted 1/17/2017 3:49 PM (GMT -5)
I 2nd Girlie.... Most likely Bart infection was never treated. I would recommend finding a new LLMD. Some say Bart is the main infection and Lyme is the co-infection
Posted 1/17/2017 3:58 PM (GMT -5)
Hi, Janecb. Welcome, and I hope you can find your answers! It sure seems like we all have a unique key!
Posted 1/17/2017 4:16 PM (GMT -5)
Hi Janecb. Welcome. While I cannot speak personally about what's going on in your body, I can say that is very unlikely that you only have on co-infection. To add to the mix are candida, parasites, environmental/heavy metal toxicity, organ dysfunction, possible mold toxicity, viruses. These all play a role, we need to treat them in order to properly heal. Did you speak to your provider about testing for these?
Posted 1/17/2017 4:48 PM (GMT -5)

Janecb said...
I was in treatment for 6 months. I didn't stop treatment,my LLMD said I don't need to continue since the bacteria is out of my system.

Yes I had one co-infection..Mycoplasma. It has also been treated and is no longer present in my system.

If you had Lyme disease for over 5 years untreated, then I doubt 6 months treatment would be enough.
I don't think I have seen/heard of anyone with a longstanding infection healing that quickly.

The treatment is supposed to be continued until active symptoms are gone,

If you never felt better...then it wasn't long enough.

You might want to think about starting an herbal protocol ... or look for another LL Dr. for more treatment.
Definitely someone who looks at coinfections - particularly bartonella and Babesia.
Posted 1/17/2017 8:00 PM (GMT -5)
The other thing is that the 'very sensitive tests' don't exist. Most tests rely on the body's ability to produce antibodies to a bacteria that is know to reduce the immune function - and a healthy immune response is what's needed to produce antibodies. Even the DNA testing can easily (and regularly does) miss Lyme infections. The co-infection testing is even less reliable.

Even the CDC says that these infections should be diagnosed based on symptoms with the testing to back up the diagnosis - but it doesn't always. Only rarely does it back up the diagnosis because of how the bacteria impact the body.

You still have symptoms, so it's still safe to assume you have the infection(s) - just like would be done with lesser infections like pneumonia, bronchitis, sinus infections and so many more.

I agree with Girlie, you really do need to find a Lyme literate doctor (one that doesn't place test results above symptoms) and/or start an herbal protocol on your own.
Posted 1/17/2017 8:17 PM (GMT -5)
Jane, if you email me (it's on my profile) I'll send you a link to a list of Lyme knowledgeable Drs. and practitioners in Europe. The list contains comments on their treatments.

Unfortunately they're all in Germany, but looks like many if not all, speak English.
Posted 1/17/2017 10:19 PM (GMT -5)
It sounds like you weren't treated long enough and still have active infections
Posted 1/17/2017 10:48 PM (GMT -5)
Which test was used to check if the bacteria was still in your system?
Posted 1/17/2017 11:06 PM (GMT -5)
And don't forget about Biofilms and persisters that hatch after treatment is finished. And also don't forget about biotoxin illness where all the toxins are still stored and you are re-experiencing symptoms as if its still a current infection.

My lyme went to zero, and up popped Babesia. Anything is possible.
Posted 1/18/2017 1:51 AM (GMT -5)
Imo you still have lyme or toxoplasmosis or bartonella ...you can verify via microscopy
Posted 1/18/2017 3:52 AM (GMT -5)
I have to seriously question what test you did and why your Dr thinks it's any indication you're healed. Maybe you all have something special in Europe but in the rest of the worlds Lyme community it's well known that tests are unreliable markers of infection progress.

That said I agree with everyone else saying you need to consider coinfections. A lot of causes of MS are thought to be viral so there's that to consider. Then there are also cofactors that don't necessarily cause symptoms but create a persistent niche for infectious organisms. Ie environmental molds, toxins, lifestyle habits that impact immunity etc. The body is an ecosystem so try not to get hung up on one organism and keep looking at the bigger picture. Some of these studies now are showing spirochetes in most Alzheimer's tissues. Others consistently find fungi and yet others viruses. So which ones to blame? I think you should stick around here some more whether you have Lyme or not because the principles of Lyme will help in all illness and you should get a Lyme literate physician to reevaluate your situation. Don't be afraid to shop around on them. Like any doc some are better than others. And also I might suggest considering an herbal protocol and perhaps reading Stephen Buhners books. It'll become clear quickly why pharma has failed these illness and get your mind oriented to how you can approach this whether it's ultimately Lyme or not (though his book is geared specifically to Lyme coinfections).
Posted 1/18/2017 11:30 AM (GMT -5)
Welcome to the community! I am so sorry for your struggles. I agree with everyone else re: finding a lyme literate Dr. and also the need for more treatment. In my own approach, when things tableaud, I began to consider WHAT ELSE it could be. Also, from the reading I've done, different things work for different people.
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