posted
I just get more confused every day, so my numbness has gone away and stayed away for now, but now my whole body remains extremely heavy and I'm so short of breath. I never had these symptoms before, been on agressive tx since december 10th , heavy sntibiotics, and iv's for three wks now, I understand this is not a long time when dealing w/chronic lymes, but does it really get worse before it gets better, it just seems if Im on these meds, why am I getting new symptoms, are the meds stirring this up in my system? Also the fatigue gets more and more crushing every day, and pain. thnx
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
and I've always had restless leg syndrome with this, now my WHOLE body is restless, legs, stomach, any one have this? and the rls feelings are not so much twitches but an uncomfortable jumping feeling but I am not jumping.
[ 04-02-2012, 01:22 AM: Message edited by: shannon12 ]
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Shannon, I think this may be a herx. Your liver cannot keep up with detoxifying the poisons that are left behind when the Lyme bacteria are killed.
What are you doing for liver support? Liver support provides the liver with the things it needs to make glutathione.
Some LLMD's suggest that the patient take several days off of antibiotics, to let the herx subside.
If you stop the antibiotics for a day or two and notice that the symptoms improve, there's your answer.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Shannon, what you are experiencing is common with Lyme and other tick-borne diseases. Symptoms come and go and migrate. Yes it typically gets worse before getting better, and this can cycle also.
Do you have co-infections? Some of your symptoms could be from Babesiosis. Sometimes when multiple infections are present, symptoms of one infection come out when treating another one.
Posts: 4681 | Registered: Oct 2000
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
God, when do these suckers die.?/
I'm on heavier meds and still have a lead suit feeling, the tingles are more
consistant
I'm so hot and then I have to cover myself cause air even feels weird on me and the fan is going...sleep what;s that either none , knocked out wher people thinkk you sound drugged or something
your not, just can't budge.or sleep an hour , have a weird dream,,alot about past people /or one you thought youd be by, before this had you flat,,
I can't believe the change just from Summer to now ....Lord I thought with an answer came healing...
could it be other illness with this some how almost as strange.
Lord I need a bath and some outside air so bad
Sorry ,rough morning/night/weekend/
something just has to be the right answer,,
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Detoxing should help if this is a herx (likely, given the time frame).
Detox methods (use one or two daily to start with, then can slowly add others as tolerated):
Drink lots of water (add electrolytes or fresh squeezed lemon juice) Bath soaks (add espsom salts or baking soda). Foot soaks (epsom salts or baking soda). Dry skin brushing (or use a rough dry wash cloth) Binders (charcoal, apple pectin, etc.) Liver support (see Carol in PA's post above) Sauna (only if don't have a port/PICC) Vitamin C etc.
May also need to reduce your abx dose for a few days to give your body a chance to catch up with the die-off.
And do contact your doctor to let them know you are experiencing such difficult symptoms.
For me, I find homeopathic Causticum very helpful for the restless joints (body-wide).
I hope you feel better soon...
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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lymetoo--what specifically do i take for this? I'm on iv rocephin, diflucan, amanadine, ceftin, biaxin, vitamin supplemnts, immune boosters, llmd said this is a good treatment? I mean what more can I do?
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
lymetoo- I didn't know that, good to know, I'm also on flagyl, but I had mentioned it to my doctor last time I was there and he said this is stil what he wants me on?? maybe some stuff i'm on will help it, i don't know , can't take much more of this.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The meds you are on do not treat babesiosis.
Seems like your doctor is going after lyme very aggressively. Sometimes when the lyme is knocked down, a coinfection like babesiosis starts making more trouble. That seems to be what is happening to you, as others have said.
You can ask your doctor when he plans on adding babesiosis meds.
You need to read the Burrascano Guidelines a little each day until you are totally familiar with them. Learn all about babesiosis and its symtpoms, bartonella and its symptoms. Learn the treatments for each of these common coinfections.
Some lyme doctors are sophisticated enough to treat lyme and babesiosis simultaneously. Some can treat lyme, babs, and bart simultaneously. That saves the patient all of the agony caused by untreated coinfections, but you will be taking more medications.
Hopefully your doctor understands that lyme patients have coinfections and he can recognize the symptoms of them. Has he tested you for them?
The aggressive lyme treatment has gotten rid of your numbness--a lyme symptom. Now, you are short of breath which is a classic babesiosis symptom. Burrascano calls it "air hunger (page 23)."
Become educated on all of this and you will understand what your doctor is doing. You may also notice shortcomings. This is all the benefit of education.
Notice that flagyl kills the cyst form of lyme (page 15). Rocephin kills lyme in the spirochete form. Diflucan kills yeast in the intestines (yeast is a common result of treatment with flagyl and other meds you are taking). Ceftin and biaxin are also lyme meds. He is really going heavy on the lyme meds.
Page 15 tells you that flagyl can be irritative to the nervous system. That may be the cause of your all over jumpiness.
"4. Flagyl can be irritative to the nervous system- in the short term, it may cause irritability, "spacey" feelings, etc. Longer term, it can affect the peripheral nerves, causing tingles, numbness, etc. If mild, a change in dose may be required. Often, extra vitamin B can clear these symptoms. If the nerve symptoms persist or are strong, then metronidazole must be discontinued or these symptoms may become very long lasting." (page 15)
Try adding extra vitamin B and especially sublingual (dissolves under the tongue) vitamin B12. That is what my doc told me to buy and it really helped for nerve-related symptoms. Didn't take long for it to work either.
Otherwise, you have to tell your doctor what is happening so that he can decide whether or not to stop or decrease the flagyl.
Flagyl is a difficult drug to handle for some. You don't want to be damaged by it, so keep your doctor informed of these side effects.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Guidelines Page 27, Very severe Lyme Disease can be a clue to Babesia infection, as it will make Lyme symptoms worse and LYME TREATMENTS LESS EFFECTIVE.
Quote Guidelines Page 24, (Because of these dismal statistics, the current regimen of choice for Babesiosis is the combination of atovaquone (Mepron, Malarone), 750 mg bid, plus an erythromycin-type drug, such as azithromycin (Zithromax), clarithromycin (Biaxin), or telithromycin (Ketek) in standard doses. This combination was initially studied in animals, and then applied to Humans with good success. Fewer than 5% of patients have to halt treatment due to side effects, and the success rate is clearly better than that of clindamycin plus quinine).
Sometimes you have to put the carriage in front of the horse to understand the guidelines. But none the less, it is spot on.
FYI, I went thru 5 or 6 docs who just treat lyme here in PA (it was like swimming up river in a flood) until I got in with a real LLMD out of state.
I only know of 2 LLMD's in SE pa that follow the Burrascano lyme treatment protocol, which is Omnipotent, And they were backed up 10-12 months.
Shannon12, I hope you found a good LLMD. There are many self proclaimed LLMDs in pa, trust me I was their patient.
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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posted
well thanks for all the info everyone, I was tested for all co-infections positive for typhus, lyme , rmsf, negative babesia, which I didn't know until recently from i think lymetoo or tf that this can come up negative, next time i see my doctor, I am going to mention this to him, he says he consults regularly with Dr. B via telephone, it's very hard for me right now, I'm trying to sort out what I should take, what I shouldn't take, I mean really if I took every pill and supplement every one suggested to me, I would be taking over 100 pills/day.
Not that I don't believe everyone in saying what worked for them, I'm just trying to get a plan going for myself right now. I research this stuff every night after I drag myself through long day at work, I just can't retain a lot of the information I read.
I am really interested in the whole babesia thing, I truely didn't know this test could come up positive.
Cracker Jack: I know if it really comes down to it, I WILL switch doctors, I don't have a problem with that, I think you actually messaged me your doc, it's just so hard to tell right now I want to give everything time to work, but don't want to waste time either. My doctor consults with Dr. B. but does not follow his protocol entirely, so I don't I guess we'll see.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
TF: I'm really wondering if this is what's happening with the flagyl, it's hard to tell, I'm only on it one week out of the month but when I go on it I think this stuff seems to happen even worse.
Another problem I have is if I have a question for my doctor in between visits, I call and it's so hard to get an aswer because the nurse is so busy, she doesn't get back to me for over a week and that's because I keep calling and calling, on the other hand, my doctor has gotten on the phone with me sometimes and talked for over 30 minutes, I'm so confused about what to do???
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
shannon, when Burrascano says something, it is accurate. So, when your jumpiness gets worse on flagyl, it is becaus flagyl can have this side effect. You better take the sublingual B12 or call your doctor and see if he thinks you should stop the flagyl.
I don't want to scare you, but just read the Burrascano quote I gave you.
" If the nerve symptoms persist or are strong, then metronidazole must be discontinued or these symptoms may become very long lasting." (page 15)
Some doctors are so afraid of flagyl for this reason that they won't give it to any of their lyme patients.
So, you decide if the vit B is important enough to you to do what Burrascano says or what.
Regarding having questions for lyme doctors between visits, in general it is unheard of for the doctor to get on the phone with you between visits. That NEVER happened during my lyme treatment.
During my time of treating lyme, I only called for serious things and I told it to the office assistant. Then, she told the doctor at a convenient time and called me back. Often, I had to leave a message describing the problem.
If the problem is very serious, they got back to me within a day. If they deemed it less serious, they might get back in 2-3 days.
The lyme doctors are so busy, that is the way it almost always has to be.
If the patient is always calling with every little worry or every little new symptom, they soon tire of that person and tell them to stop it or in othe ways try to extinguish the behavior.
MANY lyme patients behave that way due to lyme anxiety, etc. So, that adds to the long wait to get replies for all patients of that doctor.
Don't keep calling and calling trying to get an answer to your first call. You must wait for them to call you back. You are just flooding the phone message system and making more work for the doctor's office due to your impatience.
That is why I suggest you try what Burrascano says. I am not "everybody" telling you to take a certain pill. Rather, it is Burrascano telling you that flagyl can do what you are COMPLAINING ABOUT and telling you what to do about it.
So, just know that you need to keep the phone calls to the doc to a minimum. Call only in emergencies and read and figure out how to help yourself with all of the bothersome things that are happening.
This is the normal world of a lyme patient.
Make a list of your questions and then ask them at your monthly lyme appointment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF: I appreciate your information, but to make a few things clear, I am not flooding my doctor's office with phone calls. I don't call with every new sypmtom, believe me, I know they are busy, but I'm also paying a lot of money. For example I'm waiting for FMLA papers that I left w/doc last time I was at his office over one month ago to come in the mail, unfortunately I live alone and have to work full time.
Another thing, over a month ago my doc suggested low dose naltrexone, so the pharmacy that they use called me the next day to get my info to send the drug , the same day i found another pharmacy that offers it at half the price, so i called with that pharmacy info (fax # and stuff so they can set it up with them, that has yet to happen.
This is the stuff I'm talking about, I've gone through PVC;s, sever neuro symptoms in the ER and DIDN;t call the doc, so please DO NOT refer to me as IMPATIENT, and figure out how to help myself? really, wow why would you ever be so harsh to someone? I'm actually VERY patient, I may be newer to lyme, but I've been suffering for 9 years, all of my 20's.
I do not have a husband , boyfriend or any one that helps me with bills, so I think waiting for FMLA papers for over a month is a little ridiculous and when I need my job to be able to pay for the treatment I receive at their office. The calling and calling I was refering to was mostly about these two issues.
I didn't say you were everyone telling me about supplements, please take a step back and RELAX and you said what I'm COMPLAINING ABOUT sorry if i'm complaining. Why would you even say that to someone with chronic lyme disease, didn't you go through this yourself?
All I was saying is it's hard to sort out all the supplements that everyone is telling me to take, and what worked for them, it's not that I don't believe you or trust them. It's a lot to take in.
I actually understand what you mean if I'm calling too much, I can actually be taking away from other people's care, and calling for nonsense, but I'm not that person, you have it wrong. Don't jump to conclusions.
Although you can probably contribute a lot of info, and I've got some good info from you in the past, just reading your posts and stuff, please do not respond to me anymore, I really can't take any additional stress right now and I certainly won't tolerate being talked to like an idiot. In NO way was I trying to offend you.
BTW: I'm not an impatient person, I'm patient, intelligent and figure many things out on my own, including how to go on everyday, despite being by myself every day with not a great support system, dealing with multiple severe losses in my life, and now just recently a brand new medical issue on top of the lyme.at times being afraid to go to sleep at night, as I would assume you have gone through many of the same things.
[ 04-05-2012, 01:58 AM: Message edited by: shannon12 ]
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
UPDATE: my impatience has lead me to yet another mistake, it's been almost two months since I gave doctor my FMLA papers.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
My LLMD always answers my e-mails when I am having a rough time-so long as I don't email too often!
Posts: 1276 | From maryland | Registered: Jan 2009
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