posted
I have a meeting via telephone with Dr. P next week. He wants to see some progress. But with the MS lyme connection it is difficult to tell if we are progressing or inbetween attacks. Here is my report to submit to him.
If you are feeling charitable and want to look it over that woudl be great.
June 21, 2006 Report: --
I have been on doxycycline for 5 weeks. The first two weeks were on 200mg and the last 3 weeks were on 300mg.
Assessment: -After two weeks on medication the bilateral
I think 5 wks is way too soon to see much improvement. Let us know what he says.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
I agree with Lymetoo. It took several on both Bicillin and Biaxin for me to have flashes of improvement. It may be relevant that I had gone undiagnosed for at least twelve years.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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LostCityAgent
Unregistered
posted
I love you all, but David is kind of a Hero for me. He really takes his time to look over my case.
posted
Are you saying I didn't read your progress chart?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I'll say it again. Five weeks is much too short a time in which to decide whether you have improvement. Especially for someone with neurological symptoms that look like MS.
I have found Dr. Burrascano's checklist from his Treatment Suggestions to be very helpful in assessing whether I am improving or not. He has a long list of symptoms from all the body systems. You mark how severe and how frequently these symptoms are appearing.
I fill it out at the beginning of each Dr. appointment, and it really gives me a good picture of where I'm at. Some things I don't think of until prompted by that list.
Neurological symptoms can come and go over time, even without treatment. Just keep persisting, and you should eventually see things turning around.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
John, to my mind you ARE showing signs, however small and perhaps fleeting, of improvement.
The headaches, for example, are a good sign. People without lyme disease do not usually get this from doxy. (although it IS possible.)
Other things have relented and returned to a lesser degree.
You are on a small dose of doxy for a big guy.
I would personally like to see you on an IV, but that's just me.
If not, then doubling your doxy dose would be a fine idea, and perhaps adding in another medication.
If someone asked me how I was doing at five weeks of treatment, I would say "Hellish." I have the diary to prove it. Things did NOT look up much for about six months. Yet here I am today, catching shameful numbers of fish and freely dispensing cheap advice.
Wait a minute. You don't believe me, do you? Here. Let me cut and paste my diary from last year, six months into treatment. You don't think I make this stuff up, do you?
Michelle
------------------------------------------
Monday, Oct. 17, 2005. Out of Provigil. Head hurting. Took G to doctor for her broken leg. Fell asleep in waiting room at Dr's office. Almost fell asleep driving home. Could not stay awake once home. Provigil samples in mail from JoAnne. THANK YOU JOANNE!!!
Friday, October 21, 2005. Head a nightmare all week. I hate Flagyl. Try to walk without moving head. Have been taking Relpax sometimes on consecutive days. Sometimes in only dulls the pain, does not fix it.
Tuesday, October 24, 2005. I am on my fourth day of Abx hiatus. Could not take it any longer. Dr XXXXX gave permission for up to five day break so I caved. My head hurt so bad all last week I could barely function at work. Am purging all antibiotics, OD'ing on yogurt and probiotics. Will start up again tomorrow on everything.
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Yep, you're lots better, Michelle! I can tell by the way you "talk"!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Lymetoo: Yep, you're lots better, Michelle! I can tell by the way you "talk"!!
Yeah, those were some dark days -- make that MONTHS!!!
I post because I don't want people to give up.
And to understand that it is a SLOW process. You have to be out from it a bit in time and looking back to get things in perspective.
It is really hard to get a fix on "progress" while you are right smack dab in the middle of the bad part.
There was a time when the people on this Board told me to have faith, my head WOULD stop hurting, but I didn't really believe them -- it seemed impossible!!! But they were right.
Everyone, keep the faith.
Really.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I completely agree with the above assertion that 5 weeks is really, really early in treatment to be looking for miraculous results.
I know the neuro stuff is scary -- I have it too, in spades -- including L'hermittes, which of course is thought to be a hallmark MS symptom. BUT, I am feeling much better with abx (5 months so far), and I know that MS wouldn't respond this way.
The headaches you describe are classic lyme headaches from what I've read (and experienced!)
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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LostCityAgent
Unregistered
posted
OK, But what about this horrific internal vibration? Could that have something to do with the Yeast or the internal ograns being inflamed?
It used to only be in the back torso, now it is in the legs.
posted
I believe, now putting two and two together, that I am suffering with a herxeimer. This makes sense in that the majority of my symptoms are neurologic as I have the MS presentation of LD.
After starting treatment and being on it 3 or 4 weeks (I am now on week 6) this is where I am at:
Subsided Symptoms before medication: -The myoclonic nigh whole body tremor -Parethesias of the hands had begun to go away - Altitudinous vertigo -Leg weakness. -R eye floater
Subsided Symptoms after medication: -Arthritic symptoms in my knees and wrists. -Bilateral foot numbness. -Leg Weakness -Buzzing/numbing patches in the legs when walking.
Possible Herxeimers:
Herx 1: within 1/12 weeks of mediction (200mg, Doxy) -heart palpitations, headaches, painful joints (not severe), myoclonic body tremors (mostly nocturnal), tremor in the left hand (new symptom) that was occasional. These symptoms burned out after 1 week or so.
Herx 2: week 4 -Severe leg weakness (have not had severe since 2005, but had it this last Spring) -Buzzing/numbing patches in the legs when walking. -Parethesias as strong as it was when it began originally. -Milder form of Lhermitte's sign. -R eye floater -Heavy frontal headaches, and back of the neck headaches.
Is the specific to a Herx pathologically?
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
John, short answer: Yes.
With addendum: I'm not a doctor, but I'll bet your doctor will agree.
Here is another diary excerpt at exactly six weeks of treatment. So you will know how I was feeling last year when I was in your shoes.
Short answer: Not very good.
Did that indicate anything at all in the big picture? Nope, other than I was on my way to being better.
So are you.
Michelle
--------------------------------------------
Friday, July 8, 2005. Headache woke me at 2:45 a.m. Could not return to sleep. On Diamox; went straight to the double dose hoping for relief.
Saturday, July 9, 2005. Tried to just rest all day. Head shrieking. Out of Relpax. Took two Percoset's. If they had any effect, could not tell. Did not leave house.
Sunday, July 10, 2005. Fished. Head pounding. Not as dizzy as last weekend. Feel my heart beating in my eye. Hurts to move eyes from side to side. Pain better if I hold still, don't lean down. Worse on left side. Feel my brain is swelling beyond capacity of skull to hold it. Why is it so much worse on Amoxicillin than on Doxycycline?
Monday, July 11, 2005. Learned that Georgia has Lyme, CDC positive. So had hoped to learn otherwise. Trying hard to stay upbeat and positive so she will, too. Hard with bad head. Rough day at work. I will pass a road and wonder if I should have turned there. Have no confidence in my decisions. Names of new clients leave me puzzled. Fake it as if I know who they are.
Posts: 3193 | From Northern California | Registered: Apr 2005
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LostCityAgent
Unregistered
posted
Michelle, You are so damn helpful. You have no idea that I am actually going to be not sleepless in Seattle. Thank you for your pioneering efforts with the journaling and sharing them. I know that this take your time. You have no idea. Do you excercise? I have a glid machine. Do you this would be safe?
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I went 7 months before my joint pain started to subside.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
If you are interested, Lost City Agent, I have kept a fairly comprehensive blog about my husband's progress on Cpnhelp.org. Check in Blogs by users--There are many more there, too.
Like you, my husband has MS and is treating with abx. He has been on them for about 5 months.
We have found that there is no steady upward progress---A roller coaster is a good analogy. There have been some pretty good days, even stretches of them, and there have been some pretty profound negative reactions that if not for their brief duration and connection to the administration of abx, would have shaken our resolve.
This I am sure of, since starting the abx there has been no further progression which is not true for his pre-abx course.
One other thing that I think is important to keep in mind, you have not even started to touch the cyst form of the bug and flagyl, although it has caused the most negative side effects, has also heralded in days of feelings like "the old self."
Hope this helps. Sojourner
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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David95928
Frequent Contributor (1K+ posts)
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posted
You guys are too nice.
John, let me start that I am FAR better than three years ago. Still, I have occasional bad days in which I have slight rotational vertigo, or maybe my tendons ache, or the brain fog is worse (actually that has improved noticeably in the last six months, yes 2.5 years into treatment). I still get mild neuro symptoms sometimes. Despite occasional mild symptoms, I went from nearly bedridden to being able to lead a normal life, including building my own house.
However, in earlier times I really tried to take the position that Lyme creates constantly varying symptoms, probably due primarily to neurotoxins. If I had tried to interpret each symptom variation, I would have really driven myself crazy. I genrally tried to hold of reassessing how I am doing until at least three or four months. I clearly remember a day in May 2003 (about four months in) when I realized that at that moment nothing hurt! It had been ten years.
One of the things that helps me with things like fluttering sensations in my skin, twitches, and sudden muscle spasms is IM magnesium sulfate. Have you tried this? A number of peole here use it. I tried oral magnesium but the laxative effect always kicked in before any theraeutic effect.
Last spring, I had a screening colonoscopy. Interestingly, at least to me, for several days afterward I feld wonderful. A whole subtle but constant presence of mild neuro symptoms were gone. I just felt really clear. That has led me to consider having a series of colonics. I'm not quite there yet but the idea hasn't gone away.
These are are a couple of basically benign things that might offer you some symptomatic relief. Hang in there. Lyme treatment is a marathon, not a sprint. Feel free to PM if you like.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by LostCityAgent: Michelle, You are so damn helpful. You have no idea that I am actually going to be not sleepless in Seattle. Thank you for your pioneering efforts with the journaling and sharing them. I know that this take your time. You have no idea. Do you excercise? I have a glid machine. Do you this would be safe?
John.
Hi John. I am glad to be helpful; just sharing my experiences. It actually still kind of shocks me to read over some of my old diary entries. The cool thing about neuroborreliosis is that you get to forget most of it!
I have a treadmill. I try to use it in the morning. I fell off the wagon horribly last year because of my exploding head. I am back on the wagon now. I think exercise is mandatory, though I would take it VERY slowly, and get my doctor's OK. 'Specially with your back issues! It may well be that swimming or a gentler exercise would be better for you in view of your disk problems.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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LostCityAgent
Unregistered
posted
What a way to start the day!
Thankyou Michelle, David, Sojourner, Tree Patrol et al.
David: I did PM you an extensive historlogic pathology (not the MRI) did you get it? Your pathos is inspiring to me and you are very generous and kind to me. I cannot explain, over a text message, how better and safer your support makes a young man who just turned 27 feel when he feels that his life is going to suck! You are great. This is truth not kindness.
Michelle: The latter remarks are for you too. I noticed in your fishing pictures that you look super fit. You see, everyone has been telling me that I will not lose weight until the infection is under control. I find that unacceptable. I must do something. What is the point of saving myself of my looks go, I get diabetes, etc. So the glider is low impact. When I had my first attack I had been running hardcore and was overweight. So, I think the glider may be OK? You? Also, as a boy we owned a sailing boat. And spent many of your weekends fishing on the Puget Sound. I was the assitant skipper to my Dad. My father died in September at age 62. It was premature, his surgeons killed him. Anyway..sometimes I wish that I could go out on "Warm Wind" and just feel the wind hit my face, and eat some nice smoked salmon. If you ever visit Seattle you must go to Blake Island. You would love it here.
Sojourner: I will look at this blog asap. Like Michelle, it is amazing to see progress and it makes me have hope. You are a caring wife to him. A loving wife.
Treepatrol: Thank you as well. What does your screen name mean? Is this regarding ticks on trees?
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