littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
So I've been treating since 2009. I know I've been re-infected with Bart twice in 2012. Although lately my symptoms have been really bad. I'm not getting better, at all.
So when do you stop attributing everything to Lyme and co-s and see if there is something else going on?
I mean my symptoms are bart and lyme symptoms but since I'm not getting any better, even with med changes, in fact getting worse.
Current REALLY bad symptoms that have been hanging around for over 2 weeks...
-Really bad neck pain -Swollen Lymphs/glands -Hives -Fever -Fatigue -Back Pain -Leg Pain -Joint pain (mainly knees and ankles) -headache -night sweats (even when it's cold) -chills
And sometimes foot pain.
So when would you all say...hmm maybe something else is going on, especially if you have a family history of other conditions that cause these same symptoms?
I guess I know I need to see a doctor...my LLMD or a doc, but I have no insurance and so I'm kinda just putting it off and chalking it up to Lyme. Any opinions, experiences. I know this might sound stupid...but I guess I'm at a loss since they are all lyme and bart symptoms.
And I believe my last re-infection with bart was in the summer, been on rifampin lately but have been on other abx before.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I think it's good to get a second opinion if you're not getting better, or getting worse. Go for the best doc you can afford (you're worth it).
Also, the back pain, chills and night sweats were babs for me (may explain why you're not getting better). Swollen lymph glands were parasite related for me as well. Have you considered treating parasites (also helped me with babs)?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
First, I would make sure that my lyme and coinfection treatment was adequate. For me, that means that it lines up with the Burrascano protocol--high doses and combos of meds.
Some don't get well unless the doc treats lyme, babs, and bart simultaneously.
Then, if the treatment is good, move on to detoxifying. Do you have indications that you cannot detoxify? Have you tried detox agents (green tea, glutathione, cholestyramine, etc.) and have they helped you. If not, try them.
Also, supplements. Are you taking the required ones. Are you doing the Burrascano weight lifting routine (one continous hour every other day) to boost your immune system and drive the meds deeper into the tissues. My doc and all Burrascano-type lyme docs tell their patients that they will NEVER get well unless they do this exercise.
Are you on the anti-yeast diet. Do you have any signs of yeast (white tongue when you wake up, etc.) If so, you have to be treated for yeast. Diflucan, etc. Yeast will make you as sick as lyme.
Are you doing forbidden things--drinking, smoking, not getting adequate rest, using steroids of any kind, etc. These prevent healing.
Have you been tested for adrenal fatigue. If not, you need to do that.
Have you been tested for heavy metals. Have you been tested for parasites. Have you tried parasite treatment to see if it helps you.
A top notch lyme doctor would test you for every conceivable thing and would run through all of the above and more, based on your history.
Lyme includes so many illnesses, deficiencies, and problems related to inflammation that I doubt you have to look further than the lyme disease complex. I would go through the Burrascano Guidelines very carefully putting a check mark next to the things you have done and putting a note "need to do" next to the things that have not yet been done.
These are the things that come to mind. Be methodical and thorough in searching for the missing piece.
Once you have done every single thing listed in Burrascano, then it may make sense to look outside of the lyme disease realm for an answer. But, do the obvious first.
Also, I don't know how you know you have been reinfected with bart (and just bart; not bart and lyme and babs) twice in 2012, but this is definitely going to cause you to go downhill. You have to make every attempt to keep from being reinfected. This often requires a change in lifestyle.
My lyme doctor told me all that I had to give up. He even suggested I sell my house and move to an area with less ticks!
At first I had a certain amount of depression over all that I had to give up. But, now, about 8 years later, that is long gone. I have been symptom-free for 8 years now, enjoying my life. The things I had to give up to get back a totally normal life were well worth it. I have a great life now. It is just a little different from what I used to do.
Each time you get reinfected, you are adding to your germ load. You can't make any progress that way.
Posts: 9931 | From Maryland | Registered: Dec 2007
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I think we all need to get second opinions from the very start.
IMO, there isn't one doc who can get you well. You have to be under the care of a LLMD, and a naturopath/integrative doc, as well as particular specialists related to your own situation (eg, endo, gyno, acupuncturist, hematologist, immunologist, neuro, chiro, etc. etc. etc.)
TF, WOW. That's such good advice. I can do this for my kids and I've already done the majority of it for them. As for me, I am just so tired of it all.
Posts: 1885 | From here | Registered: Jul 2012
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Thanks TF. Yes to most everything. I don't know for sure I wasn't re-infected with anything else. I was bit by fleas, which is what gave me Bart in the first place. It's where I work, and unfortunately, the bills must be paid so I don't have a choice to change that part of my life right now. Even though my husband has been carrying the work load for me for about a month now, he can't keep doing it alone. As soon as I'm not in as much pain I need to go back to work.
And everytime I got bit up I had a bart flare, only bart symptoms.
My doc does follow Dr B.
I can't exercise because I can barely get off the couch from the pain. I would love to. But I just can't.
Also if I do too much at once my heart rate shoots up, so I have to be careful.
I talked to my doc last night and We are running some more tests in the next couple of days to make sure it is lyme and bart and other issues and not something else because of this recent flare that seems to have come from no where and is SO BAD. And isn't letting up.
I think we are checking to make sure my body isn't attacking itself at this point and for the family history issues I have, like Cancer.
So we'll see what the blood work reveals.
TF, how long did it take you to get better??? And how sick were you before. I know you've told your story before but I can't remember.
Thanks for all the great advice. I've done a lot of research since this all began and made sure to find a doc who followed Dr B and was also aware of the supps and vitamins needed. Thanks again.
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Many of your symptoms sound like Babesiosis to me. It can be a tough disease. Have you ever treated it?
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
littlebit,
It took about 6 months of lyme treatment before I started to notice any improvements.
I was getting OK lyme treatment, but no treatment for the coinfections. I had babs and bart.
So, to get well, I ultimately had to move on to a better doctor.
Posts: 9931 | From Maryland | Registered: Dec 2007
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
We have pretty much ruled out Babesia because I do not have a lot of symptoms. The only symptoms that could be babs are As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:
___Chills ___Fatigue and often excessive sleepiness ___Night sweats that are often drenching and profuse (however my night sweats are not drenching and you can have night sweats with Bart) And as you can see with the rest of the symptoms they are more likely with Lyme and Bart which I have all the symptoms of Bart and many of Lyme. ___Joint pain (more common with Lyme and Bartonella) ___anxiety/panic (more common with Bartonella) ___Lymph gland swelling (more common with Bartonella and Lyme)
Now symptoms of Bart that I have.
___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion) ___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of �coming down with the flu or a virus� ___Sweats, often morning or late afternoon (sometimes at night) � often described as �thick� or �sticky� in nature (this is more of the sweats I have) ___Headaches, especially frontal (often confused with sinus) or on top of head ___Eye symptoms including episodes of blurred vision, red eyes, dry eyes ___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity � so-called hyperacusis) ___Sore throats (recurring) ___Swollen glands, especially neck and under arms ___Anxiety and worry attacks; others perceive as �very anxious� ___Poor sleep (especially difficulty falling asleep); poor sleep quality ___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations) ___Muscle pains especially the calves; may be twitching and cramping also ___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis) ___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc. ___Tremors and/or muscle twitching ___Heart palpitations and strange chest pains ___Episodes of breathlessness ___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins ___Shin bone pain and tenderness
And the Lyme symptoms from canlyme that are relevant to this situation are
Musculoskeletal System Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia)
Respiratory and Circulatory Systems Shortness of breath, can�t get full/satisfying breath, cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats
So with all that being said. We have pretty much ruled out Babs because my symptoms are mainly Bart/Lyme overlaps. Even the symptoms that I have that could be babs are also symptoms of Lyme and Bart. So I really do not believe I have Babs. But we have gone over it, a few times, and i have taken abx that are for Babs and did not herx with babs symptoms at all.
So there's all the reasoning as to why I and my LLMD do not believe I have babs. I hope I explained it well and it all makes sense.
On a side note, we are going to do some more testing next week to see if I have something else going on. And since babs can affect blood work we shall see if any of my results come back abnormally that babs usually effects.
posted
littlebit- I had no idea what babesia what or what its symptoms were. I got tested for it, and came back positive for Babesia Duncani. I dont have chills, night sweats, day sweats, or fevers since becoming ill last February. According to everything I read and from what people tell me, my chronic head pressure/ears popping and sinus pressure along with regular headaches are the only classic thing for Babesia.
Idk if its because its not the "popular" microti strain or what. I also wonder if it is protomyxzoa rheumatica but I am unable to pay for the test so I will never know. My LLMD said even if I came back positive, the same antibiotics I am on/will be on will treat it. I'm not sure it would ever go away though. I just hope I dont have it and start to get better soon.
Posts: 251 | From Baltimore | Registered: Oct 2012
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Yes, it is definitely hard to tell which symptoms are from which infections. For me, seven of the ones you listed in your first post are the ones I have from Babesiosis. I have different kinds of sweating also, and I do not have Bartonella.
Since you have had these for the last two weeks, I wonder if it could be Babs coming out now because you have treated the other infections. I am just speculating of course. I hope you don't have Babs. Be aware that you can have Babs and have normal blood work.
Nothing is ever easy with these diseases!
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