posted
I was discussing my treatment with my doc today and how frustrating it is to still be disabled after 3 years of pretty heavy antibiotics, heavy metal detox, and other solutions.
We discussed 3 possibilities:
1) It's still Lyme & co-infections and I'm just taking a long time to get well. 2) It's neither Lyme nor co-infections, but some unnamed (perhaps viral) illness, since most bugs would be killed several times over with the doses of Abx I've been on. 3) It's permanent damage caused by Lyme & co, and I'm as good as I'm going to get.
Now, none of those are really attractive options, but at least #1 holds the hope of recovery.
My question is:
What kinds of damage from Lyme & co can end up permanent? Are the symptoms I list below potentially permanent?
The main reasons I remain disabled are:
Chronic Insomnia leading to exhaustion Severe fatigue on exertion Vertigo Depth perception challenges Migratory head, muscle & nerve pain (mostly low level) POTS GI issues leading to poorer nutrition (some are under control now)
I have plenty of other minor annoyance symptoms, but I am not a severe case. I occasionally use a cane to walk, but I have not ever needed a wheelchair, have never been hospitalized or visited the ER for Lyme.
But, I am unable to work, drive, clean my home, shop, cook, or even shower regularly.
So, I'm trying to figure out what I may have to live with for the next several decades, and which may still be managed/improved.
Posts: 168 | From Delaware | Registered: Aug 2005
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posted
Oh, and inability to think logically or do simple math. Thank God for Microsoft Excel to balance my checkbook!
Posts: 168 | From Delaware | Registered: Aug 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Here are a few of my ideas.
- Are you sure its not a coinfection?
For me babs treatment seems to be even slower than the lyme. If you ask others I think you will see coinfections can take awhile to treat before symptoms get under control.
- Do you think you have yeast issues?
Many of the symptoms overlap with lyme.
- Do you think you have food sensitivities?
( Gluten intolerance or celiac disease, problems with dairy etc)
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Have you checked your hormones? Sometimes that can be a problem with insomnia.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
That's a good question. I have worried about that too.
If you want my honest opinion, the body and brain are pretty resilient. I believe that they will eventually heal themselves IF the cause of the symptoms is removed.
Thus, I don't know if the infections are still active, but I would think something is still messed up (autoimmune issues, hormones, etc) that is causing symptoms. It might be VERY hard to correct some of the havoc these infections have brought, but I doubt it is impossible.
You have to think too, those viruses are everywhere. So, it's not just that you are super-unlucky to have them....a lot of people come in contact with them. (unlike Lyme, most believe). Rather, it is that something is causing them to not go away for you. So, look at strengthening your body and immunity.
Though it is a scary thought, I would say permanant damage is the least likely of the three options by far.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
On another note, I have been ill for 7 years. The first 3 or 4, I was SEVERLY ill, like you. The showering thing hit home with me....some weeks I only had the strength to shower 2 times! (i know, ew.) I never went anywhere.
Anyways, I finally did find something that got me from barely functioning at all to maybe 40 or 50%. For me, it was very high dose Amoxicillin, but for you, it could be anything.
Now I am married, i can cook, and even go out and socialize sometimes, though it's not always a walk in the park.
Just don't stop trying, and don't be afraid to switch doctors. I switched docs half way through and that's when I started making progress.
Sometimes it is beneficial to have a fresh perspective, even if your doctor is fantastic and very knowledgable about Lyme.
Keep trying new things....if I can make progress, especially after 3 years of no progress you can too. But you have to try everything. Don't give up! AND, never rule out any of the coinfections! When in doubt, treat them.
Posts: 4590 | From Midwest | Registered: Jun 2008
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adamm
Unregistered
posted
My doc says permanent damage/debility is pretty uncommon,
posted
I did treat Erlichia and am now treating mycoplasma. I think I must have picked up the myco communally because I never tested positive before. But, I spend so much time in doctor's offices, it'd make sense I could be exposed to the m. pneumonae.
I've also swapped doctors. Several times, in fact.
The first doctor asked to see me 3-4 weeks later, but their scheduling said 7 weeks. Didn't look good for ongoing care.
The second doc was an ID. He treated me, but he was reluctant to push hard to get me well.
The third doctor told me I'd never get well and would always be disabled. I stayed with him only to detox heavy metals.
The fourth doctor was actually pretty good, but I had to move across the country because I could no longer afford to live in California on LTD income.
My fifth doctor lasted the longest. He was the one who got me well the first time (in 1994). I stayed with him for 1 1/2 years. The best I can say is that he knocked out the Erlichia. I made nearly zero progress on the Lyme.
So, now I am on my 6th and 7th doctors, who I am seeing concurrently. One is getting my IV covered by insurance. The other is addressing my system issues. Leaky gut, dysautonomia, insomnia, etc.
It's been a long, bumpy road, and I'm just wondering where this detour is going to dump me off at. Will I be able to jump back into the fast lane? Or will I always be riding on the shoulder with the hazards on?
Azure, you had some good questions. I did test for Celiac disease, and I apparently don't have it. I have been trying a low gluten, low sugar diet. But, since I can't cook, I have to rely on what the restaurants who deliver will make for me.
I snack on things like carrots & pistachios, chips, though sometimes I do fall down & eat candy. Since it doesn't make it worse for me, I am assuming the yeast/sugar is not the problem.
I also did Diflucan for yeast, and I have Mycelex as needed. I watch my tongue for any white stuff. Though, admittedly, since it's hard for me even to brush my teeth regularly (my arms get tired & weak), sometimes it's hard to tell.
I am on a daily dose of Theralac for prevention, as well as a supplement that's supposed to help out my intestines and liver.
I also take Epsom salt baths to detox. It doesn't seem to do much, except relieve muscle aches.
BTW, I have almost never truly herxed with my treatment. The most I can say is that I felt more tired one week when I started Rocephin IV. Otherwise, I was consistently bad, and I even spent a couple months bed-ridden, only getting up to go to the bathroom.
The progress I've made is that I can now stand when I do manage to shower. (I used to sit down due to weak legs & poor balance.)
I'm out of bed, and I can occasionally manage a grocery shopping trip, or a small cleaning project. I can't do much walking due to my POTS and a problem with my hip.
I'm still a mental midget, though, and I can still only manage like 5 minutes on my little pedal exerciser.
WOW, this is the longest post I've ever written. And it's taken me over a half hour to write it.
Anyway, I just need to know if I may be stuck with some of these things. Like, if my depth perception and vertigo don't improve, I'll never be able to drive again. (the opthalmologist recommended vision therapy, so I'll have to try that.) If the fatigue continues to dog me, I'll also never be able to work again. Posts: 168 | From Delaware | Registered: Aug 2005
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I really sympathize with you in not having energy for cooking, but you say you are eating restaurant food, hydrogenated fat and even sugar. Anyone who has been very ill, is going to have trouble recovering with a diet like that.
You don't have to cook to eat healthy in fact eating a high raw food diet is much better.
One of the raw foods that has helped me a great deal is dried wheat grass. Dried alfalfa is also a very good food. Even for the sweet tooth, there are solutions with raw foods. I make truffles with ground raw cocao beans and agave syrup.
I am improving AND AM NOT HAVING ANY TREATMENT AT ALL! No herbs even. I can't even take abx. I am holding out for the BIONIC 880.
I have gone gluten free, dairy free sugar free mainly fruit free and am living mainly on vegetables and meat (I can't even have fish apart from salmon 2 x week because of the mercury)
Meals don't have to complicated - just an advocado if one is tired is good nutrition.
If your thyroid is ok from a blood test ie low TSH don't take that as being ok. It needs to be done via a urine test.
Good luck!
Posts: 148 | From europe | Registered: Apr 2008
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posted
Oh and I think the herbal parasite cleanse and sublingual B12 have cleared my brain.
Posts: 148 | From europe | Registered: Apr 2008
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posted
Yes- lyme is NASTY! It can cause damage of the most insidious kind. But as for being "permanent, well, I have ...'permanent'... damage to my brain from both lyme and tbi. But I improved quite a bit, especially soon after; the improvement slowed down later, but I don't think the rate of improvement has totally gone to zero.. You have to "discover the new you"- I still seem to have some have ability in several areas (music, mainly); just not the same ones (math and physics) DaveSPosts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
Inadaze - If you are paying for food to be delivered, why not inquire about someone who loves to cook healthy food and hire them.
It may end up being cheaper and you will have more control over the quality etc.
For example, I have problems with my eyes (not severe) and I love Thai food.
If I order it out it seems like the oil goes right to my eyes and within an hour I can hardly watch the Red Sox game!
I hope that what you are experiencing is not permanent.
Have you looked into things like hyperbaric treatment, or the long interesting thread about LEDs?
I really hope you feel better soon.
Posts: 1129 | From Maine | Registered: Feb 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
InADaze--
I was a vegetable brain and an invalid for a long time. Now, I am doing so much better...going for long walks, grocery shopping, cooking, laundry, errands (all in the same day). The two things that helped the most were:
1) Treating for babesia---I didn't have the "classic nightsweats" but I had bone-crushing fatigue, heavy legs, and the back of my neck was always hot and my muscles were extremely tight. When I started treating for babs, I actually had the nightsweats and chest tightening as part of the herx....Treated for four months with Mepron, zithromax, and artemisinin...Worked great for me...
2) Identifying that I DID indead have yeast issues even though I didn't think I had a yeast problem (I had no white tongue, my bloodwork for yeast was normal, and I had been taking Nystatin and probiotics while on abx). I was SO WRONG.
Since I still had pain in ALL of my joints (unlike the migratory pain that lyme causes) and fatigue (muscle soreness after exertion), and dizziness, I suspected yeast. I started taking Diflucan and herxed BIG TIME (itching, worse fatigue, worse pain, sinuses drained)....
After treating for yeast with Diflucan, probiotics, and diet, my ENERGY HAS SKYROCKETED and NO MORE FUZZY BRAIN!!!!....
I almost believe that yeast should be treated as a co-infection. Many on this board do not realize that yeast RELEASES TOXINS...interferes with cognitive function, causes pain in joints, interferes with immune system, causes severe fatigue, causes gut issues....
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
I have actually been looking into getting someone to cook for me once a week and deliver my meals. I haven't gotten past the screening phase, but I have someone in mind. I didn't go with anyone yet because they were running all kinds of GI tests on me.
At least now that it's summer, I can eat some more fresh raw foods.
The problem is that I find decision making hard, so I put it off, and end up doing nothing. I can get on a roll and get a few things done, but once I stop, inertia kicks in again.
Perhaps once I stop seeing 2 or 3 doctors a week, I can get back to finding my personal chef.
I didn't notice any significant changes when I took the Diflucan. I've read that people have herxed from it, but I stayed pretty steady.
I also tried an antibiotic holiday. I've done this a few times when my system got all wrecked. Unfortunately, the main benefit I've found from that was simply the fact that I didn't have to remember to take so many pills, and that my GI was a little calmer. It didn't affect my other issues much.
I know I need to bolster my immune system. I was in the office with 2 very sick people today, and I'm afraid I'll come down with what they had next. I just don't know what else to do for it at the moment.
Posts: 168 | From Delaware | Registered: Aug 2005
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bettyg
Unregistered
posted
hi there,
be sure to go top of medical and look for post from TINCUP ....PHA article on COGNITIVE SKILLS article.
i copied it over here and broke it up good; PRINT THIS OFF; youre going to learn so much about yourself as i did when i broke it up and then later read it tonight!
you mentioned many things you can't do; they ARE addressed in there!! good luck.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
#2) Caught my attention. Viral issues are debilitating! Have you had viral testing. You should be on an anti-viral..they can make this VERY BAD, I know I live with them. Check out this link on viral co-infections, I also think other co-infections, possibly Bart/ehrlichia could be holding you up, I doubt you are perm damaged: http://tinyurl.com/555wnz
posted
i have not read all the responses, but I do have some permanent damage from lyme. Mine is arthritis and is stuff you can see on x-rays and MRI.
when the arthritis is so bad that it causes damage to the joints, the x-rays will show broken bones, lost cartilage, etc.
antibiotics are not going to grow new bone and cartilage back, however it is possible for the body to heal if all other factors are conducive to healing.
the list of symptoms you describe do not sound like permanent damage to me, but I am not 100% sure. I dont know about nerve damage. I dont know if it shows up on imaging. I have had a lot of neuro involvement and none of it shows up except a few white matter lesions in my brain.
Posts: 615 | From maryland | Registered: Oct 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
In a....As for permanent, I am leaning toward some of the symptoms of tick borne diseases as being permanent until some Dr can find more magic bullets that work for everyone.
My daughter has lived with this for 10 years now with some major improvement but with a major relapse currently.
The bacterias have damaged her brain and pitted it. It has caused reduced blood flow and it has disrupted the normal electric flow within the brain. I am no Dr but think many with late diagnosed or misdiagnosed tbd's probably has some effect on the brain.
From personal experience, this is not easily reversed and we have not been guaranteed that it will ever be completely reversed.
A second issue is that a Dr in S.Maryland that has done a lot of research and has treated hundreds(perhaps thousands) of patients with damage from neuro toxins believes that all toxins can cause similiar damage within the body. If you look up mold or neurotoxins, I would think you would get some hits.
He feels that mold, blue-green algae, red tides, tick borne diseases, heavy metals, a bacteria found in fish(cigutaria-not sure that is how it is spelled. Found in some big game fish and in inner water river in Florida), pfesteria,etc can cause damage in most people but especially those with a genetic makeup that allows them to get many diseases and another gene that does not allow them to adequately detox. Any of the above can mask symptoms that are identical or similiar to tb diseases.
Just other things to worry about. But we had no idea that mold was an issue until we tested our house and discovered 3 rooms that were hot. After major cleaning, including gutting 2 rooms, and dehumidifiers, etc, we are in better shape.
Hope this helps. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
ps..Gigi should have some good posts in the archives on neuro toxins. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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I've also swapped doctors. Several times, in fact. ![[Smile]](smile.gif)
The progress I've made is that I can now stand when I do manage to shower. (I used to sit down due to weak legs & poor balance.) 
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