seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
For those of you who remember, I've been treating Lyme since Aug-08. I'm starting to do some reflection now that a year has nearly passed since starting treatment.
Some things have gotten better compared to other days. The last month on full-dose Biaxin seems to have helped somewhat with respect to fatigue. chills, and a few other symptoms.
I am thankful for this, but at the same time I have lots of concerns.
I just am not getting relief from the muscle tightness / stiff-man feeling at times. Especialy when I do physical activity - anything at all. 2-4 days later I feel horrid and the reality is I do very, very little. I am ashamed of how little I can exercise.
My balance issues are somewhat better, but partly because I take over-the-counter Meclizine a lot of days. I also have been on Baclofen (20 mg daily) for a year.
I'm just starting to question this whole Lyme/cos thing and wondering if there's more. It shouldn't take a year+ to get slightly better. I know some here say sure it does, but I just am not a believer.
I don't read stories from most of you saying you had muscle tightness and miraculously it went away. I read Sixgoofykids saying she exercised through her whole illness and similar. I've carefully tracked those here who complain of Fibro-muscle tightness/pain and they don't seem to get better.
Maybe the IDSA is right and I'm being taken for a ride dreaming antibiotics are the cure-all. A half a year will now go by between every LLMD appt. That frightens me in the big picture. I feel like normalcy slipped away.
I'm also feeling embarrassed to explain this stuff to co-workers, family, friends, etc. After a long enough time of not getting cured, you start to look stupid.
I'm willing to bet a lot of $$$$ that as soon as I'm subjected to more stress, more physical exertion, etc., my body would cracxk instantly. Not good after treating for a year.
Maybe I need other drugs to be more functional, mabe I'm taking too many things. Part of me wanted to get involved in Lyme activism, but unless I am cured, I will not support this cause as I don't know I surely have this and it's the cause of my issues.
I still think every day about how my LLMD is unable to look me in the eye and say you have Babesia, Bartonella, or any specific TBD. That's not cool. It's circumstances like this why I am not a Lyme advocate yet. If docs can't admit you have something, how can a patient support a cause?
I'm sorry if I sound a bit frustrated. I am. I truly do appreciate any improvement I've made. THe reality is I rarely get out of my house though during the weekdays and lost all normal functionality for two years. I lost who was me.
[ 08-02-2009, 09:08 PM: Message edited by: seekhelp ]
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I am frustrated right there with you, my worst symptoms is gastroparesis and chronic muscle pain/tension (the stomach is a muscle too) along with smaller things like floaters, ear fullness, insomnia.
It has not really improved at all with over a year of IV's, heparin, and treating for 'possible' bartonella. Along with supplements, diet changes, detox, ect.
I know many many people on a personal level that have been treated for lyme and have gone on to be 100% symptom free or very close. Then there are some of us who just seem to be stuck on a treadmill, not really getting anywhere...
One thing we are still pioneers in this illness, so much is not known with chronic illness. Doctors still don't know the best way to treat this stuff because of no funding.
Second, testing is better compared to 3 years ago but we still don't know for sure about these co-infections. Fry has admitted they have no idea what is in the blood smear and antibody testing is not great yet. Although there is some good DNA testing coming soon, hopefully this year from what my doc says. It is suppose to be fail-proof to false negatives and false positives.
Third, there is still something that is being missed with this lyme disease/chronic illness. Something BIG, is it another infection? Don't know... It seems the Big 3 is Lyme, Bart, & Babesia. Maybe there is more out there, or maybe bartonella is not important... we don't know???
All we can do is keep trying and sharing information among patients and doctors. Look back 5 years at what we knew and compare it to what we know now. Much progress! but so much more needed.
I get angry thinking about my days just wasting away, but if I do get well or greatly improved, it will make the rest of the days I have so Awesome, that I won't worry about it.
Posts: 458 | From Miss | Registered: Mar 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I believe the muscle tension is the incurable piece of Lyme/cos and might not be due to them. It just doesn't go away for people so it's illogical to say Lyme causes it. If one is able to exercise, the bottom line is they don't have what I'm describing. I say this because the suffering you endure to exercise is not acceptable when the muscle/back tension flares.
Unless you are sitting there wishing someone would take your head, take your feet and pull hard apart to get tension off the spine....it's not the same issue. Muscle relaxers don't help this. It's like there's something embedded in the muscle tissue.
We all have our problems and I'm not saying this is better/worse than anyone else's for sure. I'm just trying to describe this particular symptom that plagues me so much. Also, I'm hoping others chime in that had it and beat it (if they exist).
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My muscle pain is different than what you describe .... but I am diagnosed with fibromyalgia and it is one of the lingering symptoms that pops up still. Just the other day in Pilates, I had limited movement in my left side, which is much more affected than my right. Also, my left side was substantially weaker that day.
I get relief from lymphatic drainage massages .... in fact, if I don't get one every other week, the fibro comes back.
Also, I started getting breaks in the fibro when I started doing Hulda Clark liver cleanses. Time for another one because it's been bad the last week or so.
So, for me it appears that the fibro is more caused by the toxins I'm dealing with than the bacteria.
I did exercise throughout, but the level of exertion varied based on how I felt. For many months I could do no cardio or I paid later. I could lift weights, though not as heavy as before.
Sometimes my exercise consisted of a short walk .... or a long walk. I couldn't ride a bike until I was into my 8th month of treatment and even then that ability came and went.
I am vocal about exercising because I think it's necessary .... but only to your ability .... with a disease that makes us sit around or lie around almost all the time, it's important to challenge ourselves to move some .... not necessarily a lot, but some.
I hope you get some relief soon.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I feel very similar as you. I have treated LD for 15 months; taking a few months off to try something else, but mostly treating lyme. I have had slight improvment in one year. I can measure my improvement in a year; but can't measure improvement in one or two months because that is how slight the improvement is.
I also have a hard time exercising. I continue to try but it is ridiculous how little I can do. I don't work, but I am not on SSDI. I quit a great job because I couldn't function.
For about 6 weeks I have been on low dose doxy. Everyone says no way can you get well on low dose doxy, or low dose anything for that matter.
However, I feel somewhat better the last couple of weeks and hope that I am not just setting myself up for disappointment by saying that.
Honestly I don't know how anyone knows for sure what you can and can't get well on. We don't even know for sure what we have.
For me LD makes the most sense because practically everything you can think of has been ruled out. So my theory is I can either just accept being ill for the rest of my life or I can TRY something that might possibly get me well.
I don't believe I just woke up one morning with an unknown mystery illness. That makes less sense than LD. Doesn't mean its not possible. But logically something has to be causing all these awful symptoms.
The only other explanation that might make sense, would be if you believe in the autoimmune theory. Maybe the spirochetes are all dead and what is left is the autoimmune reaction. That doesn't sound that far fetched. (Sorry, people please don't jump down my throat). I know this sounds IDSAish, post lyme syndrome theory.
The only way to possibly get to the bottom of this theory would be to stop antibiotics for a long time and possibly take steroids and see what happens.
If you recall I actually did take 3 weeks of steroids not long ago, and then started on plaquenil. The steroids did make a slight difference, but had a horrible reaction to the plaquenil. That is when I started back on antibiotics.
So anyway, I totally get what you are saying. I too question if taking meds for years is the answer. I just haven't found a better explanation yet for my illness. It fits well into the Lyme arena. What else can we do?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
My suggestion (which some of you have heard before) is test for everything, treat what looks most obvious.
First make sure your PCP, neurologist, rheumatologist, cardiologist, endocrinologist, etc have ruled out the obvious causes for your problems. If everything comes back normal, then start looking at infectious pathogens.
Test for lyme and company, HHV-6, EBV, Cpn and enterovirus. I have stated how to do that in other posts, so I won't go into that here.
Treat what looks flaming obvious, not the "maybes". See how you do. If you have chronic pathogens it will take quite awhile to get well. In my case, I always notice improvement from medication in the 4-5 month period of time. If I don't get that improvement, I move on to something else.
I've had the best 2 months in the last almost 6 years of my illness. That is because I'm treating HHV-6, EBV, Cpn and enterovirus.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Seek, have you seen this very interesting post by LymeMD? In it he describes the muscle-tightness being a hallmark of some possibly unknown parasite, and that he has seen resolution of it with malarone and art.
Back "fibromyalgia" has been a symptom that I started with and that has never left. I suspect this parasite also. It is likely NOT babesia. ---------------------------------
Tuesday, March 31, 2009
Fibromyalgia remission with Malarone
I have been treating a 46 year old woman with chronic Lyme syndrome for about 18 months. She resides in Montgomery County Maryland and her favorite hobby is(was) gardening. Her presenting complaints were muscle pain, muscle weakness, fatigue, joint pain, neck pain, headaches- with an exacerbation of pre-existing migraines, night sweats, brain fog with forgetfulness- word recall difficulties- short term memory loss- slow cognitive processing and severe depression. She in fact had no idea that she might be suffering with chronic Lyme disease when I suggested the diagnosis.
She had been a regular patient for several years treated only for migraine headaches. She had not shared her other symptoms with me because she was worried that I would think she was a hypochondriac. The muscle pain it turns out, was a prominent symptom. She had incapacitating pains in her muscles, especially around her neck and upper back area. Her muscles were knotted and stringy and exquisitely tender. She saw a pain management specialist who diagnosed "fibromyalgia," and treated her with trigger point injections as well as a mix of pain meds.
This occurred during the 6 months prior to the Lyme diagnosis. Looking back, it is now clear that she had suffered with fibromyalgia for 20 years. She did not share her symptoms with others in her life. She blamed herself. Somehow, she believed her symptoms represented a personal failing- as she struggled to keep up with other well functioning people around her. Only by sheer will and determination was she able to create the illusion that she was well, when in fact she was getting sicker and sicker.
Finally, almost inadvertently, she shared her story with me.
Her exam had classic Lyme neurological abnormalities. Her labs were fairly unremarkable. Her IgeneX WB for Lyme showed only a positive IgM 31 band with several other IND bands. She wanted a positive test to be convinced she really had Lyme disease. I explained that the 31 band was highly specific. It took some coaxing, but she agreed to start treatment for Lyme.
She took Amoxil and Biaxin for about one year. She was nervous about changing medications so we kept to this one regimen. Most of her symptoms improved. Overall, she was 60% better. Persisting symptoms included sweats- which thought were due to menopause AND there had been no change in the fibromyalgia piece of her syndrome. I convinced her to try Mepron, believing that she had sero-negative Babesia.
Her insurance turned down Mepron so I substituted Malarone, perhaps fortuitously. Follow up labs continued to be seronegative for Lyme disease by IgeneX standards and Babesia. I also ordered a blood wet mount performed at Clongen. Extracellular motile organisms were present.
After 3 months on Malarone she noted that the muscle pain was almost completely gone. After five months on Malarone all signs and symptoms of fibromyalgia were 100% gone. Her knotty,lumpy muscles were replaced with smooth, normal tissues. This is one very happy patient! Her "menopausal" sweats were also gone.
This is conjecture: She never had Babesia. The motile parasites seen in blood wet mounts may have been responsible for her muscle disorder. We known that these parasites do not live in blood or blood cells- they are extracellular. This means they primarily reside in other tissues. Their numbers must be so numerous that they egress into the blood. A likely place for parasites to live is muscle tissue. One must wonder: could fibromyalgia be caused by muscle parasites, at least in some patients?
This case shows remission of longstanding fibromyalgia with Malarone- used in conjucntion with Biaxin and Amoxicillin.
Posted by Lyme report: Montgomery County, MD at 5:26 PM
Posts: 3528 | From US | Registered: Apr 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
CD57, interesting. I actually felt better while on 2 months of Malarone.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry, I haven't read all the responses yet. I'll come back later and read them.
I'm not going to try to convince you one way or the other since you've been here long enough to have heard all the arguments.
You wrote: I've carefully tracked those here who complain of Fibro-muscle tightness/pain and they don't seem to get better.
I was the fibro queen. 9 years of the worst kind of pain you can imagine. All over my body, just about every muscle imaginable.
Into my 3rd year of treatment, with months of IM ceftriaxone, the horrid muscle pain was reduced by 70%! To me that is a miracle.
You know all the things that you can do to see if they are impediments to your progress. They've been talked about here a lot so I won't go over them again.
Wishing you the best, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Why are you only seeing your lyme doctor every 6 months?
Posts: 9931 | From Maryland | Registered: Dec 2007
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I agree with Terry, you know the story at this point ...
But, I will say this. When I was initially diagnosed, I'd been acutely ill (primarily neuro) for two years. I did not test positive for Lyme with any conventional tests, not even IGENEX WB, the only thing to come up + was the urine antigen test, which was popular then (in the mid 90's, I think). That one was through the roof.
On one level I believed I had Lyme, but on another deeper level I, like you, was never really convinced. Sick as I was, I also thought, "Okay, now that we know what this is I should be able to take a few pills and be okay." My LLMD at the time said to me, "I don't think you understand how sick you are." Though my brain and CNS were shot, I was still functional then, alternating between periods of crushing disability and periods of okayness. Mostly throughout, I was exercising, working, living -- everything. I was young, strong, healthy before this, and, consequently, I did not take my trx as seriously as I should have.
By 2004 I was CDC + on both IgG and IgM, with about 10 bands and 5. I also test positive for babs, bart, myco p, myco f, EBV, HHV1&6 ...
So now I am convinced. And here I am this many years later -- a wreck (though, lately, improving for the first time in years!).
It is maddening, frustrating being where you are. I know that. But if you don't take this thing seriously, you may never get the chance back. In fifteen or twenty years you may be here still -- writing a post to someone else warning of this exact same thing.
I wish you well.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Doc said he's too busy to see patients more frequently anymore TF. It saves $$$ for sure, but not working has cost me more money than that visit ever did. I used to have a very good job.
Timaca, I hear you. Believe me. The issue is unless I dump a $1,000+ on a local doc here, getting treated for viral issues is impossible. There are NO docs here willing. You are lucky to have open-minded docs. Most aren't.
Yes, Terry, I've heard all the arguments and do consider them carefully. Six, thanks for the clarification on the muscle issues. Honestly, I have no idea what the hell Fibromyalgia is..lol.
All the docs would say, sure stuff is Fibro. Why not toss some CFS and psych Dx into that pool of diagnoses too. My PCP used 7 Dx, including Somotaform disorder. Apparently, he consulted with that IDSA rheumy that testified at the hearing on 7/30.
Glad to hear you've made nice success Terry. I know the answer is always what choice do we have. If I go into Yr 2 and 3, I'm going to wipe out my $$$, and who knows my family and more. The timeframe is too slow.
I've been on essentially mono-therapy or close to it for 12 months now. I'm thinking maybe I should've taken IV and paid out-of-pocket.
I sure do pay close attention to LymeMD. I don't count out an unknown parasite/pathogen at all. In fact....it may very well be something like this. I'm just going to leave it at that until I hear more. Let's just say at the moment, I have some reasons to believe it could be something else causing some issues.
I'm so sorry to hear of your story NMM. Very happy you're seeing some light though with treatment!!! I don't take this disease lightly. I'll never forget what it did to my body in a month. It's an experience that will never leave me. I wish it would. Mentally, it's devastating.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Just read through this quickly.
Seek wrote: Talking about the tightness... It's like there's something embedded in the muscle tissue.
I agree with six as far as detox. For me, it is typically trigger points that have resolved greatly with detox and trigger point massage in combination with the anti pathogen treatments.
Edited to add: The trigger points cause severe tightness and almost nothing relieves it except working out the trigger point. Look for tight knots that very VERY painful.
Perhaps this isn't your problem but I wanted to mention it since so many with fibro have it.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I have had tremendous muscle pain and damage (along with many other serious symptoms). So much so, that neurologists and every other specialist thought that this was a neuro-muscular disorder. Had muscle biopsies, EMGs, and lots of other neuro muscular tests done. I went undiagnosed for at least 8 months. and finally started treatment in the 9th month since symptoms started. I had a trendously stiff neck and upper back, weak leg muscles, a ton of muscle damage straight down the left side of my body. My whole body was spasming. I had a CPK level (measures muscle damage) of 12,000. For those of you who know this test, 12,000 is off the charts. I thought paralysis was coming on. Some days I couldn't walk. I haven't been able to work in a year. I am young and healthy otherwise. 29 years old and very active (or at least I was). I finally found an LLMD and started abx treatment. Within the first couple months of Zith, Plaquenil, Probenicid, and Omnicef the stiff neck went away. This was a HUGE relief! I am now in my 6th month of treatment. Different meds now. Avelox, Plaquenil and Tetracycline. My muscles are still extremely weak (I have lost 40 lbs and was not overweight at all before) but they are slowly getting stronger. Like some other people on here, I cannot tell any differences from month to month but if I look back from 6 months ago to now, I can say that I am definitely doing better. Still a long way to go, but doing better.
I also tried Baclofen and that didn't do anything at all for me. As difficult as it is for me to exercise, I am forcing myself to do what I can. It started with just walking, then increased to a pushup or two (I couldn't even do one when I got sick) and then some super light weights. I am slowly increasing my ability to move and exercise every month. The more you use your muscles the better it gets. it is just a really slow process.
You might just need the right meds to jump start your muscle healing process. I know what its like to have such tight muscles everywhere. Its completely debilitating. My muscles constantly feel like they are being attacked and atrophy ensues. Try your hardest to be active in any way you can. It will help.
Posts: 31 | From Boston, MA | Registered: Jan 2009
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posted
seek, i DO understand the muscle issue...think i am in same boat as you wiht that one
i used to be able to excercise, i had pain then and actually used excercise for the endorphine release to stop pain for a bit. then would pay for it and cycle continued.
since last yr..sept/oct - ish..when things went downhill fast for me and lyme dx was made the muscle issue changed too. got worse, no way in world i can do a 1 hr cardio/zumba like i used to love. now, have a hard time walking
i do not doubt the lyme dx. i am CDC +, RMSF +, Myco+, babs and bart clinical. i see the labs, i get it
here are some i dont get..+ for urine myoglobin but low CPK...NO Dr gets this or has any idea. neuro at total loss. one lab means muscle degeneration the other should be high with that but is low?? is contradiction...but, i can tell you it means SOMETHING
intersted if you have had any of these tests as well. i have lost muscle mass. now new issue iwth hands drawing up, or getting fixed when grab/carry something.
using baclofen 10 mg 3xday, soma at night. and still sore/stiff.
my neuro opinion is this causes MS like symptoms. lyme the "great imitator". he is new to lyme and at least doing research on it
i have decreased cognative also...neuropsych hopefully will help get SSD approved. have not worked since last yr. cant
for me, zyflamend (supplement) and B12 DOES make a difference. the flex cream from pharmanex does hlep too. epsom salt bath, live on heating pad.
have had reiki help, now trying accupuncture as well. did 3wks of it 1xweek and did see better sleep and pain was down to where i took out the baclofen and only was using it on "bad" days. then took drug break for week and went on our vacation that was planned for last yr.
ment to start accupuntcure back up and have all kinds of family drama come up. this wk i WILL start back, i have seen the pain go back up.
maybe by comparing notes we can find something?? i think this muscle issue is a secondary result or another pathogen issue but is related (as in Lyme is the initial culprit then this happens but from what/why??? immune reaction? auto immune muscle disease secondary to lyme?? )
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
Ask your LLMD if you can up your Baclofen dose for the stiffness-- my daughter has a Baclofen pump due to severe spasticity, but before that she was on 160/day orally. Hope you find relief.
Posts: 371 | From CT | Registered: Jun 2008
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Shosty
Unregistered
posted
Seek, Have you had an ANA or any other rheumatology labs done?
I have muscle issues (my left arm is 6 inches shorter than my right, most of the time, and whatever that contraction is doing to my arm, it is also doing to my neck, and pressing on the blood vessels feeding my brain stem). I have not yet found a PT who works properly with me. lately, I have been able to take short walks in the evening, which is extremely pleasant.
Anyway, my ANA is 1:5120 (normal is 1:40). So the idea of Lyme triggering autoimmunity is absolutely valid, in my case (I also have the HLA-DR 4 allele, which makes recovery less likely, due to autoimmune reaction to Lyme). I have a lupus diagosis and get sick in the sun, but who cares about labels? It might help if you have these tests.
The question is, whether that autoimmunity means the bugs are still present, or if it is residual even after the bugs are gone. This was a frequent topic in the hearing this past week.
Plaquenil is the first line treatment for autoimmune illnesses like lupus. Not steroids. Steroids (or methotrexate) may be used if kidney problems develop, or vasculitis, or lung issues, but generally, lupus patients and others do Plaquenil.
I stayed on antibiotics for 6 years. Have been off for three. Now, I am considering going back on to see if that painful muscle contraction, that is also affecting me neurologically, will improve at all. But I will only try it briefly.
The paresthesias I have had for 9 years (pins and needles, numbness) are so much better now that I have changed my diet and eliminated allergens. I got a lot more improvement that way than I was getting from abx in the last few years, although in the first year, abx did stop electrical sensations and slurring speech.
The antibiotics themselves may have caused the food allergies, due to yeast and leaky gut syndrome. So that means that ultimately, the meds exacerbated the very problem I was taking them for.
Of course, despite my very positive Western Blots, maybe I had an allergic reaction in the first place. Maybe I had been exposed to Lyme but Lyme wasn't the cause of my problems.
You can always try going off, to see what happens. But know that there really can be a withdrawal effect with antibiotics, because they have other properties such as anti-inflammatory and perhaps even effecting glutamate and toxins. So give it a couple of weeks for the withdrawal, in order to truly evaluate.
I would do 18 months, and then try to stop.
There are no answers. All we can do is bumble along, while doctors and insurers and politicians fight it out, and research funds are lacking.
Believe me, it is even worse having kids going through this.
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posted
hi..i have muscles tightness at times worse then other times and then at times totally normal..i was a marathoner and have continued to exercise at least an hour a day the whole time since the beginning of the neuro symptoms in late 04...i had at one point gotten down to 78 lbs..and my hub was helping me lift weights..i push past pain, tightness, fatigue, dizziness. after a month of rocephin i was able to gain weight and run a marathon..then the docs put me on baby doses of doxy and i got really bad again...now i am on zithro and am getting better again..having totally sym. free days. i have been on abx since last sept (a yr now) and i wanted to be TOTALLY cured too..and i am also, in a way, embarassed that i am not cured. it is so frustrating so i feel your pain (mentally and physically)...the best thing for me for the muscle relief is" cucurmin, chorella, coq10 and b-complex. i even have a lot of facial muscle heaviness and head pressure. keep fighting..don't give up!
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2-4 days later I feel horrid and the reality is I do very, very little. I am ashamed of how little I can exercise. 
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