Geez, if these would just go away.

I have started a regimine of daily exercise and walking. That seems to be helping as I feel that I am getting stronger and in less pain. I am so thankful for these improvements.

Here's my gripe, though: I am now most troubled with brain fog (reading is very difficult and it has always been one of my great loves), depression (which seems to be greatly alleviated if I get in the sun some), and a ringing in my right ear. The severity of these three problems waxes and wanes throughout the day, but I can say for sure that all three problems are the least bothersome in the morning and the most problematic at night. I knock myself out every night with an Ativan and an Advil PM. I don't want to do this, but it's a relief.

These days I have been on 400mgs of Doxy for about 5 months. I'm also on Plaquenil. Not sure of the dosage. On tons of nutritional supplements and I have eliminated all alcohol, nicotine, most sugar, and most caffeine. Just want to get my fully functioning brain back.

I welcome all comments but especially those who have been through this and have had success in getting out of it, to whatever extent. Overcoming this has more to do with my being able to continue my job than either the pain or fatigue do.

Maddening and saddening.

Thanks,

Clark

I would just break down and have a drink and a cigarette -

But, that's just me.

I just wanted to comment on something you said about the sunshine. I have been told by many Lyme sufferers that the sunshine can make you worse but I absolutely LOVE it and feel so much better when I get a daily dose. The more sun the better I feel. And exercise is crucial for me to keep my spirits up, so keep up with those two things at least. I am going for my walk in the sunshine now!  (:   D

Dowa said...
I just wanted to comment on something you said about the sunshine. I have been told by many Lyme sufferers that the sunshine can make you worse but I absolutely LOVE it and feel so much better when I get a daily dose. The more sun the better I feel. And exercise is crucial for me to keep my spirits up, so keep up with those two things at least. I am going for my walk in the sunshine now!  (:   D

Yeah, I know that Marshall Protocol folks are very against sunshine and Vitamin D. That's all cool, but my Wiz is very much opposed to this.

 I'm sure that the sun makes me feel better and also I walk in the woods. Now, my doc is also very much against me going in the woods. And I know a lot of folks are saying, "Stay out of the woods! If you get bit again it will be so much worse." But the sun and the woods are a part of my life. I want them to be a part of my recovery.

  Now, I walk on open paths and I dress in a very "tick concious" way, and I also treat the legs of my pants and cuffs of my shirts with Permethrin. In short, I can give up cigarettes, alcohol, sugar, and even caffiene to get rid of this crud. But I don't believe that I can, or want to, give up sunshine or nature.

And I totally respect those who do not feel this way. Perhaps I will be forced to change, but I hope not.

You should have your vitamin D levels checked. A large percent of the members on this board found low vitamin d levels. This might be why you love the sun so much and find relief from it.

You might also want to talk with your dr about a more aggressive combo. I found Biaxin, roxithromycin and amoxicillin far more effective than doxycycline. I think doxycycline is a good start but there are better options out there. The biaxin, plaquenil combo is a good one to try. Biaxin, Amoxicillin and plaquenil would be even better if you can handle the herxing. That is, if you are targetting borrelia. If we start talking about the co-infections then many different combos would be needed.

 

Thank you for the advice on my treatment. All any doctor EVER wants to put me on is doxy, doxy and more doxy.

That's all I ever get. I'm still sick. So...

I can barely get up to 300 mgs a day on the stuff as it's hard on my stomach. But I do it. I take 1000 mgs of biaxin and only got that when I said "Is there anything that get past the BBB -- I think it's CNS / neuroborreilius" ... My insurance pays for my doctor visits and the doctors are ILADS doctors, so I don't know what to say or what to ask for.

phsinvent - My concern about plaquenil is that I have a few floaters from Lyme as it is and swirling things occasionally and lights etc. I had my eyes checked already and they say no retina issues -- that was in August I think before I got diagnosed. The eye doctor says he saw the floaters but there is nothing that can be done except not worry about them -- ignore them.

Before I can go on plaquenil, I need some kind of test.

Thanks!

Clark - try what Phsinvent said first, and if that doesn't work, try to see if you can do the IV route. I did a year of orals (zithromax and tindimax) with only small improvement in brain fog - 6 months of Zhang didn't make a dent in it. The only time I have truly felt I have had my mind back was once I went on IV rocephin - I am 7 weeks in and my brain feels 100% back to normal unless I am herxing, which I assume means I am killing even more off.

I read the RFK Jr. book "The last campaign" in two days after being on IV rocephin for a month - it's nice to feel like your brain is back.

hey Clark,
I understand your irritation with the reading and the depression. First get something for the depression asap. I had it for 4 years and although I was treated it only got worse. If you find you are having really highs and really lows be careful about bi-polar. Read in the forun under depression as I did. And see if you are having the same problems as the people there. I found out that I was bi polar this way. I was way to high...then scary low, wanting to find a easy way out. When I called my Dr. for a emergency meeting...he did not think that I was bi polar at all. Then I told him my terrible little secrets and plans. He got so concerned that he wanted to lock me up then. But I talked him out of it. I mean really...just stabilize me. So he did. With lamotrigine. 25mg. It was a great feeling to not be speeding any more and to be able to think. When the mind races it is hard to concentrate.
Reading...I could not read for a long time. I would finish reading a paragraph and not remember a single thing. Watch a movie and at the end..see if you can remember it. I could not. If your memory is going badly be careful. It gets worse. I did not get any improvements at all from doxy. I had gotten it from the start, the day of the tick bite. I don't think it is good for anything. But that is just my opinion. It also did not do a thing for my dog Toto and he weighted 15 pounds and took 400 a day. So I am not a fan of doxy at all.
I have seen amoxy do great things for people. But I am allergic.
I have only recently gotten rid of my brian fog and that was due to my new treatment. But it could be due to the fact that although I have always been a health nut, I have never taken supplements like I am now.
But Clark be careful, don't leave the house without your phone charged. And be careful driving. It can get scary.

JELAINEP said...
I would just break down and have a drink and a cigarette -

But, that's just me.

HAHAH.....you still make me laugh!

 

Well this still does not explain why my brain fog was out of control before i ever took a single antibiotic, to the point of forgetting words, staring at the wall and driving in the wrong direction on my way home from work. Abx were the only way i found relief of the brain fog. Doxy helped about 60% in the first year. Biaxin took the resolution of the fog even further and Roxithromycin appears to be the one that cleared it up completely. I'm just not so sure about brain fog and toxins. Are we talking about die off toxins?

The name is just "Hyaluronic acid" sometimes called hyaluronan in the scientific community. The most popular use of this supplement is in some of the more expensive topical anti-wrinkle creams. Usually combined with Retinol and Co Q-10. I started looking into it back when all of my symptoms were resolving but a few of the strange eye symptoms(floaters, flashes of light, peripheral waves etc). The vitreous humor of our eyes is comprised of hyaluronic acid so i kept reading up on it. And it appears that our bodies produce less and less of this molecule as we get older. Which could explain joint arthritis, degeneration of vision and excessive wrinkles in the elderly. Now if we throw lyme and bartonella into this mix. Maybe they are consuming or interferring with our bodies production of this crucial substance. Just an idea.

JELAINEP said...

J. Clark Nicholson said...

Dowa said...
I just wanted to comment on something you said about the sunshine. I have been told by many Lyme sufferers that the sunshine can make you worse but I absolutely LOVE it and feel so much better when I get a daily dose. The more sun the better I feel. And exercise is crucial for me to keep my spirits up, so keep up with those two things at least. I am going for my walk in the sunshine now!  (:   D

In short, I can give up cigarettes, alcohol, sugar, and even caffiene to get rid of this crud. But I don't believe that I can, or want to, give up sunshine or nature.

Now I realize I have done this backwards.  I have not given up cigarettes, sugar or caffiene (I don't drink because I'm recovering - it's a long story ).... and I can't tell you the last time I got any real sun or walked a path.............. hmmmmm, Is it true that I have been "wrong" all along? ARRRGGGGHHHHHHH!!!!!!!!!!!!!!!!!!!

Hahahahaahahahahahaha!!!!! OK, just talking to you makes me want to sit around with you and grab a big cup of coffee and a smoke. Get thee behind me!!!!!!