Geez, if these would just go away.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

J. Clark Nicholson
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/29/2008 11:21 AM (GMT -6)   
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

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/29/2008 11:41 AM (GMT -6)   
All I can say is "I feel your pain". I share your symptoms but you would have to add a pinch of dizziness to the mix.

Seemed like B12 helped -- for the most part. I have more energy fairly consistently -- but I have to say sometimes I am a zombie! And I hate it.

I have to agree with you regarding exercise. It improves all of the above.

I need to do it regularly rain or shine.

Has plaquenil helps? If so, with what specifically.

Sorry I'm no help.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/29/2008 12:50 PM (GMT -6)   
I would just break down and have a drink and a cigarette - rolleyes shocked smhair shocked rolleyes
 
But, that's just me. turn blush shocked blush turn
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


J. Clark Nicholson
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/29/2008 12:53 PM (GMT -6)   
Yeah, I feel a bit dizzy, too. I think that my have something to do with the problem in my ear. Often when I wake up I feel a little bit of fluid in it. Must be a slight inner ear infection.
 
Sorry that you are going through this, as well. In answer to you question about Plaquenil, my Wiz said that it was a pretty good "cyst buster", i.e. pretty good a breaking apart Borrelia in its encysted, dormant phase. It's an anti-malarial and I've been on it since I got off of a three month Mepron stint. My body and my wallet are glad that that part's over.
 
Here's to clearer days.
 
Clark

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/29/2008 12:59 PM (GMT -6)   
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

J. Clark Nicholson
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/29/2008 1:06 PM (GMT -6)   
JELAINEP said...
I would just break down and have a drink and a cigarette - rolleyes shocked smhair shocked rolleyes
 
But, that's just me. turn blush shocked blush turn

Hahaha!! Yeah, I feel like that sometimes. It's just that I was doing that constantly at the beginning of this and just kept feeling crappier and crappier. Lyme combined with 25 years of smoking had me hacking and wretching all day long. I finally quit smoking just because I felt, "What if I don't get over this only because I don't quit smoking?" It's been hard, but I've got too much to lose to not try everything to get my life back. As far as drinking goes, I would so much rather have a clear head than a buzz that there is no real attraction in that for me right now. I miss the taste of a good beer now and again, but I miss having a clear head so much more.
 
I do appreciate your point of view though. It's why I ate pumpkin pie and stuffing on Thanksgiving. devil smilewinkgrin

J. Clark Nicholson
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/29/2008 1:17 PM (GMT -6)   
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.


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/29/2008 1:29 PM (GMT -6)   
J. Clark and Dowa - Sunshine is great for depression. And I think that people who live close to the equator have virtually no cases of M.S.

Lyme and M.S. (and fibro and CFS) may have a few things in common, symptoms etc.

I say walk in the sunshine and bask in it if the temperatures permit. I love it personally and have not noticed -- apart from the days when my eyes can't stand it -- that I feel great when out there.

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 11/29/2008 2:01 PM (GMT -6)   
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.
 
 

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/29/2008 2:41 PM (GMT -6)   
Out of all the patients at the clinic I was going to , I was the ONLY one with Vitamin D within normal range. I thank the sunshine for that !!!  D

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/29/2008 3:48 PM (GMT -6)   
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!

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 11/29/2008 4:58 PM (GMT -6)   
Look into roxithromycin if you can. If we are talking about the non-iv route. roxithromycin penetrates the bbb better than all of the other macrolides. It is not approved by the fda in the United states(long political drug company story about competition for zithromax and biaxin). But you can purchase it from overseas. This is the only med that cleared my brain fog and resolved all of the eye issues. And believe me, i've tried them all except for IV. You would probably need your LLMD's blessing if you decide to try roxithromycin. If you do decide to do this antibiotic. I highly recommend you take it with bactrim. Bactrim somehow increases the MIC value of roxy. I could feel a difference when i took roxy with and without bactrim.
 
As long as you keep having your eyes checked while on plaquenil, i don't see too much concern about the drug. Most of the cases of eye damage did not happen until the drug was taken for longer periods of time.
 
Look into hyaluronic acid supplementation. Most of the fluid inside of the human eye is made up of this molecule. Deficiencies of this molecule can actually cause floaters and vision impairment. It is also responsible for less wrinkle production in the skin and also a crucial componant of healthy joints. I have a suspicion that some of these bacteria are consuming the hyaluronic acid and this might have been overlooked. I saw my floaters go away after I took this supplement for a few months.
 
 

jginkc
Veteran Member


Date Joined Jan 2008
Total Posts : 692
   Posted 11/30/2008 9:58 AM (GMT -6)   
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.
Month 18 of Lyme and Bartonella
On Zhang, doing much better, but not there yet!

90% functional, feel about 85% of my former self.


Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 11/30/2008 1:27 PM (GMT -6)   
I don't think antibiotics, either prescription or nutraceutical, are the way to go for treating brain fog. It's my belief that much of the cognitive disruption we experience is due to build up of various neurotoxins in the brain produced by the active infections.

I first observed a really significant reduction in brain fog symptoms after taking yaeyama chlorella. Chlorella is known to be a very good binder of ammonia in the body, which is perhaps the most prevalent neurotoxin LD patients have. All of my symptoms remit substantially whenever I stop all antibiotics for 4-5 days and use effective toxin binders like fresh/freeze-dried garlic and/or chlorella during the break.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/30/2008 1:58 PM (GMT -6)   
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.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/30/2008 7:45 PM (GMT -6)   
Hey phsinvent ! I think you're onto something with the hyalaic acid (sorry about spelling). What supplement are we talking about exactly. I need to verify that there is no conflict w. my other medications.

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 11/30/2008 8:57 PM (GMT -6)   
JELAINEP said...
I would just break down and have a drink and a cigarette - rolleyes shocked smhair shocked rolleyes
 
But, that's just me. turn blush shocked blush turn

HAHAH.....you still make me laugh!
 
The world breaks every one and afterward many are strong in the broken places


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 11/30/2008 9:00 PM (GMT -6)   
Sulma said...
I don't think antibiotics, either prescription or nutraceutical, are the way to go for treating brain fog. It's my belief that much of the cognitive disruption we experience is due to build up of various neurotoxins in the brain produced by the active infections.

I first observed a really significant reduction in brain fog symptoms after taking yaeyama chlorella. Chlorella is known to be a very good binder of ammonia in the body, which is perhaps the most prevalent neurotoxin LD patients have. All of my symptoms remit substantially whenever I stop all antibiotics for 4-5 days and use effective toxin binders like fresh/freeze-dried garlic and/or chlorella during the break.
 
Hey S :-)
 
I agree with this 101%. My brain fog and many other harsh symptoms left when I stopped abx. Not saying not to take them, but the body needs a break from the poison.
This along with a great detox plan really REALLY REALLY rids the body of brain fog.
 
The world breaks every one and afterward many are strong in the broken places


phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/1/2008 10:17 AM (GMT -6)   
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
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/1/2008 11:35 AM (GMT -6)   
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 redface smhair redface ).... 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!!!!!!!!!!!!!!!!!!! rolleyes shakehead turn shakehead rolleyes
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


J. Clark Nicholson
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 12/1/2008 12:50 PM (GMT -6)   
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 redface smhair redface ).... 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!!!!!!!!!!!!!!!!!!! rolleyes shakehead turn shakehead rolleyes

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!!!!!! devil tongue devil tongue devil tongue turn
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, October 22, 2017 5:05 PM (GMT -6)
There are a total of 2,885,763 posts in 316,635 threads.
View Active Threads


Who's Online
This forum has 157739 registered members. Please welcome our newest member, fjzraa.
379 Guest(s), 9 Registered Member(s) are currently online.  Details
Kent M., therearemiracles, countess18, Casa11, Pirouette, purplereading, getting by, Jerry_Delaware, sunny40


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer