This feels so hopeless. Is it?

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+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 11/1/2009 4:44 PM (GMT -6)   
I just ran out of Amox and have an appt w/ a new Dr on Tuesday. He is in Family Practice.  The LLMDs here are all booked and/or I cannot afford a Dr who doesn't take insurance.  Our local Lyme Association recommended this family practice to me, as 'knowledgable of Lyme'. 
 
I am very anxious to hear what he says and how he views treatment.  Even tho I have read and read and READ about how long treatment might take, I find myself feeling like IF this bacteria could be eradicated, it should have been after almost 3 months of this level of Abx. (3500 mg of Amox)  It FEELS like I should have killed it all by now, or else it must be incurable. Instead, my pain, fatigue and depression continue to worsen.
 
I am discouraged by those of you who have been in treatment for years and are still not well.  I thought I would be willing to take abx for a couple of years if necessary, but now feel scared.  I am definitely interested in more natural remedies, but am still concerned about the length of time other folks here have been on those and who must constantly keep this bacteria in check.
 
I do have babs as well, and my LLMD for some reason did not treat it.  I note that you all and the Drs say that if the babs is not treated, the Lyme won't get better. How and why is this??  If lyme responds to abx, then why can't the abx knock it out and leave me w/ babs?
 
I have done so much research and felt like I understood so much, but now feel like I'm going backwards.  I'm having trouble believing that all this makes sense.
 
I waiver between wanting to totally beef up my immune system and seek miracles, and giving up.  I'm getting weak and can hardly take pushing myself any longer.  My life, which should be good, feels like a total nightmare.  I have to work fulltime and supplement my income cleaning, every other week.  I have active dogs who need to be walked and taken to the woods to let loose.  I don't have any choices there. 
 
I am sorry to be such a whiner, knowing many of you are so much worse, but trying to support myself and my dogs, or to do any of my own chores has become miserable because of the pain and the fatigue.  Again, it feels like a living nightmare.  I really want to give up, but don't know how to do that either.
 
Is there any other kind of bacteria that is this difficult to eradicate?? And is it possible that this is incurable for many of us? I don't think I can fight w/ this for years, the way many of you have.
 
btw, I'm an almost 57 yr old woman, so it ain't easy, as it is.....
 

Post Edited (+Lyme) : 11/1/2009 3:55:39 PM (GMT-7)


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 11/1/2009 5:00 PM (GMT -6)   
Yes - Syphilis is very difficult to eradicate - and it is another spirochete...

Whipple's Disease requires antibiotic treatment for at least 1-2 years and some are never able to kick the infection completely.

TB takes a long time (not years usually) to eradicate as well.

MRSA is very difficult to kill off.

So is C. Diff. - my understanding is that once a person has this, they will probably always be a carrier and are more prone to future "outbreaks" of the infection...I don't know what role probiotics play in conquering this problem though...

Those are the ones I know of off the top of my head...I'm sure there are others.

I understand where you are coming from and have often found myself wondering if the constant fight is worth it. But I have come to the conclusion that the fight is very much worth it. I won't give in to this disease because it has taken everything from me but my life, and I'm determined not to give it that too.

Supporting and boosting the immune system is key - no matter what antimicrobial regimine you are on (herbs, abx, juggling bananas...LOL). The pattern I have noticed is that those who combine abx and/or antimicrobial herbs and immune system support are the ones who get better usually. Detoxing is also very important.

Good luck,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 11/1/2009 10:37 PM (GMT -6)   
Hi + Lyme

Lyme is scary. I mean- there is nothing definite about it. We still don't know the best way to treat for it, or test for it, and not even LLMD's can say how long each patient will take to get well.

BUT- even those people who have to remain on antibiotics can get well- it's just that as soon as they go off antibiotics they fall back. And many of them are on low-dose antibiotics that don't effect their life in a major way.

But I don't think you need to worry about that yet. It's not just finding the right strength and length of treatment- you also need to find the right combination of antibiotics/natural products. Lyme is sneaky- it's hard to find the right way to get at it. And most bacteria doesn't get left this long, and isn't able to infiltrate your system so much.

Also- I don't know any more details than you, but I have heard that if you don't treat babesia, Lyme won't get better.

I know what you mean about your life. I committed myself to school (and paid tuition) when my brain fog was so bad I couldn't make good decisions, and now I'm stuck with it- I can no longer get a refund, and if I drop out I loose all my student funding. I have to push myself really hard just go get through each day. I use up spoons from the next day every day, and then try to make it up on weekends except I can't...and I feel like I'm just waiting until my body gives up on me.

It can sound nice to think about giving up on treatment- but that won't make things any easier. You'll just get sicker, and things will be harder.

It sucks, and it's hard, but when you do get better it will be worth it. And with patience, and perseverance, I really think nearly everyone can get better.

I hope you find something that works for you soon- but keep your head up no matter what.

Hugs,

Nicky

ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 11/2/2009 7:17 AM (GMT -6)   
6 months ago I thought it was hopeless. But not now. I saw Dr. Zhang in NYC and the herbs have made all the difference in the world for me. Antibiotics are not good at crossing the blood brain barrier. Their molecular size is too large. But the Chinese herbs can cross the blood brain barrier. Each month finds me better than the month before. I am alive for the first time in over 2 years! I have not taken a single antibiotic and continue to get better and better on the herbs alone.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 11/2/2009 8:00 AM (GMT -6)   
Lyme,

Like ttlittlestar suggested, maybe you need a more natural aproach? Some of those protocols are not too expensive. I'm not sure how you feel about a more natural aproach but maybe do some research on it.

I also think that co-infections should be treated first. I bet that's why you're not feeling better yet.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted 11/2/2009 8:03 AM (GMT -6)   
I have been on oral abx for three years. I also followed a diet based on blood type prescribed by a naturopath. I have 4 to 6 good hours a day. The other hours are for rest and sleep. Some of the Lyme symptoms like joint pain and fatigue will probably be with me the rest of my life. However it is an acceptable quality of life compared to severe Lyme symptom days.

We can and do get better.

saxmar

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 11/2/2009 10:33 AM (GMT -6)   
You can do this. Do it for your dogs! Get treatment for your Babesia. Looking back now, I thought the first three months of my treatment were the worst. I'm a year and half into treatment now, but I wasn't treated for twenty years after the first exposure. Find the treatment that is right for you and keep as positive as you can. Yes, it's a rotten hand you've been dealt, but play it out!

alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 11/2/2009 8:16 PM (GMT -6)   
Hey there! Just wanted to add...the doctor I see is a family doctor who is "knowledgable in lyme." But, people drive from thousands of miles away to see him. So, just cause he/she isn't an LLMD doesn't mean he/she can't help you. And LLMD is ideal, but hey, we so what we have to do! I couldn't do it without insurance either. Even with insurance I am finding I can barely afford the probiotics that actually work. I bought some yesterday and noticed a difference by today, but they were the cheapest "good" ones I could find and it was $6 for 4 servings. (recommend 2 servings per day!). I just cannot afford it. And then on top of that, I have the vitamins/peroxide/ epsom salt/spices for detoxing, copays, etc. It is just so expensive!
Don't get discouraged! Try very hard to keep a positive attitude because some days it is ALL that you will have. Maybe the amox just isn't working for your specific lyme strains and you need to switch abx. It will all work out. Please don't lose heart!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 11/2/2009 9:12 PM (GMT -6)   
Thank you for all the responses, everyone. It is so strange -- I actually had a better day today, I would not call it fatigue and pain free, but not the desolation that I felt over the weekend. It is so frustrating how not only our pain and suffering, but mental attitude fluxuates!

I am anxious to make a 'plan'. I went to the LLMD who does not take insurance for 2 things only: Proper lab tests, diagnosis and to at least get started on abx, til I could get into a DR who takes my ins. So I am anxious to see what the new Dr thinks and prescribes. And I will be sure to question him about successes he has seen in treatment.

I have not begun any 'natural' treatments besides my megadoses of C and garlic, along w/ other vitamin supplements. I need to get organized and make a new plan. I guess, deep down inside, I had really expected a 'cure' from the Amox. I was optimisitic and expected a rapid recovery.

And Razzle, I did a little (not a lot) of research on syphillis. What I read stated that early treatment can be as simple as one shot of penicillin and in later stages may be just several more shots over a 3 week period. So, I guess I'm finding it difficult to understand how a possibly 'related' spirochete can be so utterly more complex than the lyme spirochete.

Yes, I have read that and I understand that. I guess I am just now questioning it because it seems to make little sense.

Again, thank you everyone for your responses. They were deeply appreciated.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 11/2/2009 10:46 PM (GMT -6)   
Right, but the 3 weeks of abx for syphilis just puts it back into remission. I've read that it is very difficult to actually completely eradicate a syphilis infection. Late stage syphilis is a brain infection that can crop up after years of no symptoms, too. Yes, Syphilis is much simpler an organism than Lyme, but Syphilis was known as the great imitator 100 years ago...and I don't know that we've really conquered it for sure yet. Incidentally, some with Lupus get a "false positive" syphilis test result...I really wonder if it is cross-reactive from Lyme infection...

Glad you are feeling better... Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 11/3/2009 6:56 AM (GMT -6)   
+Lyme, please note that garlic only really works if it is the kind that really smells. It is the odor containing part of the garlic that has the antibiotic properties. The odorless garlic does nothing. You need pure allicin.

Hol1979
Veteran Member


Date Joined Aug 2005
Total Posts : 566
   Posted 11/3/2009 3:38 PM (GMT -6)   
My old LLMD was and is very smart and explained to me how and why the Lyme organism is so very complex and hard to kill off. I can't even attempt to repeat it all here because my Lyme brain would jumble it all up, ha...but my old LLMD was the one who actually documented Lyme in the cyst form for the first time!
 
Anyway, god yes there is hope! I DID cure my Lyme. Mine went undiagnosed for one year and got worse and worse. After several months of treatment I got better. This was a couple years ago. I was 26 at the time. And extremely sick. Almost bedridden. When I was finally dx with the Lyme, I had a CD57 of like 10. I did Tetra for a month or two, then Zithromax for the rest of the time, towards the end of tx I had Mepron with the Zithromax. Then I got pregnant and had to quit the Mepron. I also bought every supplement or herbal, recommended here or in Dr. Burrascano's uh...thing on Lyme. I also pampered myself a lot. I figured I had Lyme so I got to buy myself whatever I wanted and go where I wanted...that sort of thing. smilewinkgrin I think it did help!
 
I was cured. I got brave and my mind seemed to have forgotten how bad the Lyme was, because recently, I wasn't careful about it when I was outside and am now reinfected. I know some may say or think, "Well you may have still had it the whole time and it just resurfaced...." Nope. I was cured. New infection. New bites and bullseye on my back and everything. So yes, you can and will get better!!
 
I know what you mean about the mental things though...oh my god, I cried all the time. Now that I am reinfected...here we go again! I cry and cry...then sometimes I laugh at myself for crying....
We will get by....We will survive -The Dead
Lyme Disease: Infected July 2005
Diagnosed June 2006,  In Remission October 2006
Gave birth July 2007, Sufferred from effects of abx
Gave birth May 2009, Reinfected with Lyme Fall 2009
 


blessings723
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 11/3/2009 3:43 PM (GMT -6)   
so taking kyloic you know that garlic in a bottle- is pointless?
I refuse to stay sick! Period. 
 
 


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 11/3/2009 5:35 PM (GMT -6)   
I know how you feel +Lyme. It is up and down for me too. I get my hopes up that I am nearly cured and then get sick all over again. At least there are some good times although I never feel completely there mentally. I love animals too and it is hard to take care of them all emotionally rather than physically. You have so much work to do. I don't know how you do it but it probably helps you a lot to get yourself out, not thinking about how miserable you are. I don't think amoxy is supposed to be very effective for lyme, according to Dr. Burrascano. I started with Doxy which caused a huge amount of herxing but I had to use the "hard stuff" - Ketek - to get it under control. Then my bartonella took over. I am not feeling too well myself - terrible headache and stabbing pains in my face. So wierd. I am determined to get over this though. I have faith that I can do it.
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