I was to the point where I thought I was getting better a couple weeks ago, was feeling 20-25% improved and now I have been in a bad slump.
Does anyone have trouble around this time of year? I think I remember last year I was strugling due to the weather fronts and changes.... not sure though?
This has been 10.5 - 11 months of treatment for me so far
Posted by Dave6002 (Member # 9064) on :
No, only improving due to the addition of a heating pad to the abx theapy.
However, I am of the opinion that cold whether or cold air conditioning may slowdown the blood circulation on one hand, which would deteriorate our condition.
On another hand, cold air conditioning might make the body more susceptible to many slow growing pathogens, which don't thrive at higher temperature but lower temperature(e.g. many Lymes have multiple pathogens active), and might be the main culprit of the recent raising of the chronic Lyme disease.
Another Lyme mystery is that there are much more female Lymes than male.
In Chinese medicine, female belongs to the cold, dark, soft, moon,... side, while male is on hot, bright, hard, sun...side.
I am not sure if science has proved that female has lower average body temperature than male, which is the impression I have.
Posted by luvs2ride (Member # 8090) on :
Dave,
Interesting info about men-hot, women-cold. Been hearing and experiencing it all my life but never knew about the Chinese Medicine view. It has merit for sure.
Until my hysterectomy at age 30, I was anemic and cold. Always cold. Even in summer. Loved heat.
After hysterectomy, got hot, real hot. Matched my husband's body temp and we kept our house like a freezer. Felt good to us.
Onset of lyme arthritis in 8/05 brought the cold back again. I was 49. I developed Rheum. Arthritis which the doctors and I are defeating and putting into remission. For life I hope.
In researching RA, hormones are suspected because it hits so many more women then men and usually hits at time of menopause. Sure fit my description.
I was first treated for lyme in 1995. Six mths abx before feeling normal again. Don't know if 2005 was a rebite or re-occurance. I am thinking both.
Long as my immune system was strong, bacteria was dormant. I was in an incredibly stressful work situation just due to work overload and commuting every week when I got sick. Hormones could have gone awry too.
Funny thing though. Thyroid remains normal after many, many tests. Only DHEA was very low and I have been supplementing it for 2 yrs now.
The first big leap in recovery for me was when I changed my diet. I found a doctor versed in Leaky Gut and we spent a year working on healing my gut. I continued to get better but not well and I developed additional food allergies during treatment so progress was forward then backward.
This spring bit again and dropped to my knees with fullblown babesia symptoms which testing revealed I have Babs WA-1. Also I still had H.Pylori inspite of standard treatment for it in April.
This ILADS LLMD said not treated long enough. She put me on plaquenil, ammoxy, biaxin and prevacid and I leapfrogged into full asymptomatic state. No pain, No fatigue. Amazing!!!
I believe my gut has been damaged all along and the stress finished off at which point I became sick. That is why diet was so helpful. Vegan to begin with and later able to identify exactly which foods caused symptoms and so was able to eat meat again. One year later identified Milk and Soy Protein allergy which I did not test positive for 1 yr earlier. Cutting those out of diet made another huge difference in pain level and then the H.P. meds finished the job.
Dr says "Not Finished". We have to eliminate the Babs and anything else that might pop up later.
So far, this winter weather is not causing me any harm. Thanksgiving did bring on some minor joint pain due to probably injesting butter and milk in some dishes. I did try to be careful but cheated a little.
Ok Bryan. Sorry for the long post but perhaps some of this is your problem too? Have you been checked for H.Pylori and food allergies? A leaking gut will sabotage any healing efforts.
I was first diagnosed and treated for H.P. in spring 2004. Shingles in Fall 2005 and arthritis in Aug 2005. I think H.P. treatment was not long enough to eradicate the bacteria and it began to damage my gut which caused the resulting illnesses.
I think the recent tickbite gave me the babs as I never had symptoms of it before. Dr said I was in an acute stage of Mono (I have EBV virus but then who doesn't) when she first pulled my bloodtests.
I am doing very well and have been virtually painfree except for my left wrist which has permanent damage and will probably need to be fused in the future. Right now the surgeon is trying to see if it will fuse itself. I'm praying for success there. Once fused it will be strong and painfree they say.
I hope some of this is helpful to you.
Susan
Posted by wiserforit (Member # 9732) on :
Hi Bryon,
Sorry to hear of your slump. I am going through a rough patch too. Besides abx increases and spirochete life cycles, there are probably a few reasons why.
1) The cold weather has stirred up body aches and arthritis. I'm using more heat packs as a result. Barometric changes do throw me into flares. I want consistent weather with no drama! Make it hot or make it cold; enough radical shifting with this global warming!
2) I also think the expectations of the holidays makes me stressed even without Lyme. Preparing fun in December for my little ones is pretty exhausting what with birthdays, Hannukah and Christmas. Oh...and there is that crazy relative visit thing....blah.
3) I've also noticed that the better I feel, the more I try to do. When I do more, I use muscles that seem to prefer to remain sedentary. The more muscle use, the more achiness. Catch-22: you want move your body to keep it operating, but your body feels it too intensely and you have to slow down again.
SO, I TRY to exercise 3-4 times a week. I TRY to play with my kids and go on outings when I have the energy (about 2-3 times a month). I TRY to make meals and do laundry. All other time is maintenance, rest and down time. Operative word: TRY.
I've been treating for 19 months (with two month-long breaks). I'm about 50% better, but that is largely due to abx, less fear about my condition now that I know what it is, and support from everyone here!
Keep plugging along, Bryon. Your observations are always so helpful; I enjoy reading your posts.
Best,
wiserforit
Posted by kam (Member # 3410) on :
All I know is those slump times after I see improvement are the most difficult for me.
I just wait it out until I am able to be out and about again for short periods of time.
Posted by map1131 (Member # 2022) on :
Bryon, yes I have a harder time this time of year. I still have some emotional issues to heal from the past, due to something that happened to me in Dec 01 with my career that ended.
You will probably be one that roller coaster for some time. Up and down you go. Try not to get too excited and hopeful when you have an up period. It would be very hard when I crashed again.
Just enjoy the ups and try not to overdo everything you want to do during this period. I know that's hard.
Pam
Posted by kelmo (Member # 8797) on :
Yes...it takes energy to be Merry.
(by the way, I thought the cartoon above was talking penises until I scolled down).
Posted by lymeladyinNY (Member # 10235) on :
Kelmo!
Posted by lou4656 (Member # 10300) on :
OMG, Kelmo!! Talking penises!! I read this, and then scrolled back up to look at the cartoon . . . and it was at that moment that I laughed so hard that I have peed my pants!! At my desk. At work. Posted by map1131 (Member # 2022) on :
kelmo, you're not alone. But I knew Bryon wouldn't post something like that, so I had to read and understand it first. lol
Pam
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lou4656: I read this, and then scrolled back up to look at the cartoon . . . and it was at that moment that I laughed so hard that I have peed my pants!! At my desk. At work.
Posted by lymewreck36 (Member # 4395) on :
Posting now from my new address, in Switzerland.
I've been treated by the nation's best llmds, and I am as bad now as ever. Main problem is it seems I now have inflamed bowels from years of high dose antibiotics, and the permeability of the bowels causes intense and chronic inflammation in the sacral joints. That seems to be the picture.
How to end that without ending my medication. That is the million dollar question.
Mary
Posted by Geneal (Member # 10375) on :
I had to look back at the cartoon. You're right!
They do look like talking pee-pees!
Men do run about on average one half to one degree hotter than women do.
I am having a hard time too. Caught some type of virus. Can't shake the cough.
Flagyl is lovely too.
For me, although I am so very grateful just to be with a roof over my head,
I really thought last year at Christmas time that my family would be in our new house
For this Christmas. It is very depressing to think a whole other year has passed.
I never really thought about how long I would be treating Lyme and/or co-infections.
I guess I am just going to try to be glad I am under excellent care of my LLMD,
I have incredible, wonderful friends here.
The weather definitely affects my body too.
Sending warming thoughts, healing prayers and hugs to all.
Geneal
Posted by AZURE WISH (Member # 804) on :
Sorry you are doing worse Byron
Are you eating differently? Drinking less water? Change any supplements? or rx? any of these things will make me feel worse. Some abx cause more yeast problems than others so i do have to watch that and adjust probotics/diet ... but i have been in treatment alot longer than you.
I think the ups and downs and unpredictability of this disease makes it much harder to deal with....
I also dont think feeling sicker at the holidays help matters.
I am much worse then I was a year ago and have been for quite some time.. (as my whining in some of my posts and on lyme chat reavel )
I think starting to treat the babs has put me into a long herx with other herxes cycling over it. I haven't gotten back to where I was before i started treating the babs.
The not knowing when things will really get better is the toughest part... if someone could give me a date it would help so much ..but i know with this disease has no guarentees...
and at this point i just try to hope tommorrow is better than today. (it saves me a spoon or so a day ) although there are days where I get lost in the when I will be "through" it enough to get back to the things i intended to do.
My joints/muscles are in much more pain now (its not terrible pain I have been in much much more pain in the past... but a year ago i had very little) The bottom of my feet hurt now which i have never had before ...
The weather which has been cold, damp lately does make my pain worse.
Hope you start feeling improvements again very soon Posted by onthemend (Member # 13454) on :
Byron, I had a terrible backslide all during October. I, too, have been on abx since Feb 2007.
Okay, is this weird? It was in Sept/Oct/Nov 2006 that I was at my very worst. Was diagnosed with LD & treated starting in Feb 2007. Since then, I made slow, fairly steady progress with a few steps back here and there.
Suddenly, this Oct - horrible, horrible, horrible. Almost every original symptom, but at a slightly lower level of intensity and duration. But it was bad. I started thinking: a cycle? Seems so awfully strange that this would bloom again at the same time, one year later.
Isn't your timeline about the same? Any thoughts? Don't mean to be voodoo, I just find it very interesting. I've also often heard it takes about 2 years on abx (if not more) to come through. Could it be that you have to make it through two cylces?
Anyway. Just thought-provoking.
otm
Posted by Dave6002 (Member # 9064) on :
Susan,
Your experience is invaluable to me. I have been reading your posts with interest and thought "leaking gut" was a big problem for me when I begun to lose weight even eating a lot. I decided to take it seriously about half year ago, treating mainly with garlic juice, which fixed the problem eventually and I got my weight back normal.
Gut is the biggest organ that is responsible for allergen tolerance. Its malfunction would greatly compromise the allergen tolerance, resulting in severe food allergy, which doesn't happen in normal people.
So probably food allergy might be viewed as a symptom for some Lymies with leaking gut.
Dave ...
Sugar, sweetie, antifreeze... man, how could I miss it.lol
Posted by sparkle7 (Member # 10397) on :
Yes. I have been way worse!
I started taking abx back in Feb 2007, too. I haven't noticed any improvements from taking the abx.
I was diagnosed with Lyme in January 2007 & I was ill for 10 years (they told me it was fibromyalgia).
I'm ready to start the Dr. C herbal protocol when I get some money.
I'm not stressed by the holidays. My pain level just went way up in the last week.
My whole right side (lower back, neck, shoulders) is in extreme pain like it's in total muscle spasm.
I have no idea why. I was in alot of pain & I stopped the abx about 10 days ago because I thought I was herxing too much.
I got worse in the last few days. I have no idea why.
It's cold here but I can't see that that would be an issue. The air pressure changes in the summer, too - so, I don't know about that.
I've been taking a 1/2 an oxycontin but it's not doing anything. I used to take a 1/4 of one & it helped alot but my pain level just skyrocketted.
Go figure???
Posted by adamm (Member # 11910) on :
I'm just starting to have my first herx Posted by myahbv (Member # 11474) on :
yes , the cold weather and front coming through makes me hurt ten times worse than i do in the summer....
me and tutu had this discussion on the phone the other day , she is opposite of me i think...i love the heat and cold hurts my body to the bones... and the holidays are depressing which makes me feel bad too...
broke ..broke..broke haha too many drs appts and meds so not many presents for kids this year...we got big family tho , so they will get plenty more....good luck to you, hope you start feeling better
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Kelmo!
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