Recovery from Lyme

[Ahodge01]

Has anyone had a full recovery from Lyme? I haven't been given a definitive diagnosis of it yet but trying to learn as much as possible seeing as it's what my doctor is kind of leaning toward. Have a MRI and full Lyme blood work coming up here in a week. So we will see i'm desperatly looking for a cause to the last six months of symptoms

[22dreams]

RE: IV

Yes, the more difficult cases -- those with more pronounced neurological involvement.
IV gets the abx Right There and the right antibiotics delivered this way penetrate the blood-brain barrier much more readily.

My former LLMd told me she would have Rx'd IV abx for me if she could have because of the Neurological Involvement. It depends on the case.

I have not had access to aggressive oral treatment since September and feel that it's been to my detriment as my ANS is now feeling the effects. Aggressive orals really seemed to help for sure or keep certain sx at bay but was not enough in my case.

The options are few here though and the funds are long gone.

[JackieCalifornia]

I've only had oral abx and have had success (I'm still wandering Lymeworld only because of another tick bite since my earlier treated infection).  My LLMD is very much an ILADS kind of practitioner, and so aggressive in treatment that I have to reign it (and the LLMD) in when it is too much for me.

I know others who had Lyme for many MANY years before diagnosis, who are treated by other LLMDs, and they have used mainly on IV abx, but I don't know enough about their regimen to guess why that may be.  It may be simply physician preference; it has been my impression that IV is reserved for refractory case -- those particularly stubborn infections.

Sometimes I get the impression that because IV treatment is harder to come by, we Lyme patients tend to place more value on it, which may in part be because we have such a hard time getting treatment at all that the least available treatment may begin to seem the most desirable.

But for those on oral abx, don't necessarily feel you are getting short shrift from your doc; it's just different approach which may or may not be better than IV abx.

Just a thought.

[22dreams]

I have neurological lyme disease.
In retrospect, if I had had the resources to do so, that is:
I would have gone on IV antibiotics out of the gate. It would have nipped this thing in the bud, so to speak, even though at the time of diagnosis, I was pretty far along (not a "bud").

My immune system had been strong to begin with and seem to keep what was going on at bay for about 5 years or so.

IV, however, is not the route most doctors go first-off.

With aggressive treatment, people do improve. A lot is dependent on the protocol, the strain of lyme, co-infections & other viral/parasitic loads and the person's own immune system and ability of his/her body to detox.

For most lyme patients, it's my understanding that MRIs don't reveal too much.
AND most insurance companies will not cover a SPECT scan
without having an MRI done first.

MRI -- shows more structural issues, anatomical.
SPECT -- brain FUNCTION, blood flow

If lyme is adversely affecting the brain, a SPECT scan is going to reveal more about the FUNCTION or lack thereof :)

The blood tests for the ANTIBODIES of lyme are deplorably inaccurate.
Worse than flipping a coin in their accuracy. But your doctor, if wise, can use results to support his clinical (NOT test-driven) diagnosis.

So: just because you may have tick-borne diseases does not mean you are destined to a life of disability or complete lack of quality of life.
However, there are those who are indeed disabled/lack quality of life. When it is left untreated and become persistent and chroinic, studies have shown lyme patients suffer a degree of debility equal to/worse than that of patients with congestive heart failure.

so: get treatment! there is no easy fix so patient is needed. but: it's not hopeless by any stretch.

[JackieCalifornia]

....and PS, yes, I do know people who are fully well after Lyme!

[JackieCalifornia]

I agree with the comments posted above.  It's a long road, but once you know what road you're on, even if it is Lyme+, at least you can begin to deal with it.

Hang in there, and know that we all through our ups and downs, physically and psychically and otherwise.  Let us know what you hear back, okay?

[wonko]

While the details of the above post differ from my situation, I agree with the underlying sentiments.

I'm greatly improved and am nearly at the 1.5 year mark of (ongoing) treatment.  

I felt the real "turning the corner" progress about 9 months into treatment.

I had high expectations for a much faster improvement, but better late than never.

I don't know how long I had it, but was going downhill and actively pursuing a diagnosis for a bout 1.5 years.  So, adding my treatment time, I'm about 3 years deep into this.

Some are more sick than others, as noted above.  I had measurable neurological, heart, and joint damage (in the forms of white matter brain lesions on MRI, mitral value prolapse, and joint erosion, respectively).  I was unable to work full time, and only able to keep part time employment due to special circumstances and accomodations, including a very very very flexible schedule.

I did go through a lot of doubt and fear that either my diagnosis was incorrect or that treatment would fail.  My laboratory evidence for Lyme was never strong, negative ELISA's and just a couple of bands on an Igenex Western blot.  

The timeframe and uncertainty are difficult.  Each person needs to weigh the risks and cost against the benefits and other options.  I felt out of other options, as I had very thorough testing for other conditions that was always inconclusive at best.  Any other condition not fully ruled out had a worse prognosis than Lyme.


Good luck, and take care.

[Michael_Venice]

Hey man. I wanted to tell you, people DO get better. I have spoken to quite a few of them since I got sick. Some were sicker than you or I, some less so. For most, it was quite a struggle. I hate telling you that, because you're not even sure what you're dealing with yet.

I am not nearly well, and have hit a rough patch lately, but I am better than a year ago. Yes, that time frame stinks, I know.

I am not sure you have lyme....but I will tell you, I've read some of your posts and test results, symptoms, etc....yours are remarkably similar to mine. The only thing you don't seem to have (that I do) is a consistent burning/tingling/aching pain in thighs/legs.

I also had very high EBV and also Parvo numbers. No one knew what it meant, and I also had the experience of some doctors telling me it was significant, and others saying it wasn't. My question was then, why do you test me for something, it comes back very high, and then you conclude it doesn't matter?

I don't know if it's true or not, because there seems to be controversy about every aspect of lyme, but I've read that lyme and the common co-infections that seem to come with it lower your immune system, and things like viruses (which never actually leave our systems) start to re-gain something of a foothold in our system.

It's all very confusing. I know SOMETHING happened to me, and it wasn't just stress/anxiety.

I also very much share your shock/feelings about doctors and the medical establishment. I had so many different, contradictory diagnoses before lyme came up. I could not get any doctors to speak to the OTHER doctors I was seeing, to resolve the inconsistencies in what they told me. Most I saw did not seem the least bit driven or moved that I was very quickly going from a very alive, active, successful person (relatively speaking) to someone who was getting non-functional.

I hope you can get a clear diagnosis of something, and start working on it.

Anyway, the point is....I keep at it because I KNOW people who were where I am at, and they're okay now. And they (for the most part) didn't often believe they would ever get better. And they did.