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» LymeNet Flash » Questions and Discussion » Medical Questions » When should I start feeling better?

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Author Topic: When should I start feeling better?
LymeNet Contributor
Member # 48591

Icon 1 posted      Profile for stefi42     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello everyone,

I've been in treatment for 5 months now and I know it's not much but shouldn't I be feeling even the slightest bit better?

I was diagnosed 2 years into Lyme along with Candida hashimotos, RA, and lupus. Before I was diagnosed I underwent brai surgery to remove a pituitary tumor. I feel that bc I had this surgery maybe it made me sicker?

I've been waiting for my brai to return but I feel just as distant sometimes borderline retarded. My memory is worse. I sleep 13 hours a days yet I'm still so tired. I can't socialize or leave my house. Nothing has changed.

Will I have my pains forever? Is this something you have to learn to live with. Honestly I don't want to leave my bed bc everytime I get up its like I have vertigo and everything just goes to sh*t.

How long do I have to wait to see improvement?

Posts: 113 | From Hollywood, Florida | Registered: Aug 2016  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 18147

Icon 1 posted      Profile for ukcarry     Send New Private Message       Edit/Delete Post   Reply With Quote 
Stefi42, I am sure that ther people will answer you, but I just wanted to say that I identify with your question, but it is impossible to answer with accuracy.

Many of us have so many different pathogens, often more than we are aware of, and this can impede our progress in feeling better.

Furthermore some people have more problems with detoxifying than others, including getting rid of heavy metals, solvents or other chemicals.

You have a number of difficult issues in addition to Lyme, as many of us do, so that makes it even harder to decide when you should be feeling some improvement.

You don't say what treatments you are having at present, but I hope someone here will identify with your particular combination of infections/issues.

Posts: 1647 | From UK | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 45305

Icon 1 posted      Profile for Jordana     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm trying to remember how long it took me to be able to say this.

I think 18 months?

I felt exactly like you even three weeks ago. The sleeping issue was so upsetting -- I truly could not control the exhaustion and I could not push through it.

Then suddenly it went away. After 18 months. And I mean totally away. In my experience it seems like you keep treating and treating and then one day poof. One of your symptoms are gone.

But it is *rough* doing this because while you're still sick there's just no end in sight and it seems like it will never end, so what's the point even treating it? I can totally relate and it's probably not good news for you to hear that I've been treating 18 months, but I did improve and I am improving.

How long? No one knows. Just keep going.

Posts: 2057 | From Florida | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
5 months is a short time to have treated, so no, it can take longer.

The other thing is, it's about finding treatment that works for you.

Interesting about the pituitary surgery - I had that too, only the surgeon DIDN'T find a tumor so removed nothing and said he didn't understand why my prolactin level was so high. Now we know, and I emailed him when I found out about Lyme

You could inquire of the surgeon what part of the pituitary was removed and ask your questions about whether they think it would affect your functioning. I'm not talking Lyme so much as just regular body functioning connected to that part of the pituitary.

My prolactin level has dropped back to almost normal due to my Lyme treatments, which have included clindamycin antibiotics for 5 years, and mangosteen juice and turmeric powder as the basic daily natural anti-inflams.

Do you get your hormone chemistry tested? Including your thyroid chemistry? My thyroid was found to be low, I'm on Armour thyroid and feeling much better. Hashimoto's is basically an attack on the thyroid so is that being addressed?

Posts: 13107 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
It took me about 18 months before feeling ANY better.

Remember, you are herxing constantly.

Robin has some very good suggestions. It's not all Lyme in your case. You have some major problems there.

[group hug]

Opinions, not medical advice!

Posts: 96201 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
It took me 6 months to be 50%.

The first 6 months, absolutely HORRIFIC !!!!!!!!!!!!!
Keep treating, keep fighting, you will get through it. [Smile]

Relapsed a few times. New tick bites. Then many flares each month.

Entering month 11 and am at 80% , 4 out of 7 days.

Hey stephi42,

You posted this 8 months ago while in month 5 of treatment.
It would be interesting to post how how you are feeling after fighting through month 13. Hope you are much better.

Posts: 2926 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Member # 50948

Icon 1 posted      Profile for Richard_F     Send New Private Message       Edit/Delete Post   Reply With Quote 
got from maybe 40% of normal to 60% in the first 12 months. then i hit 75% after 6 months and have been stuck there for another 18 months so 2 years.

sometimes it takes mixing up the protocols to see what works best for you but i believe the most important metric is time. if you stay at it and treat long enough with maybe some changes in abx's every 3-4 months you will make progress.

no one outside our community can remotely understand something potentially taking years to recover from

Posts: 21 | From NJ | Registered: Oct 2017  |  IP: Logged | Report this post to a Moderator

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