posted
I have been on different antbiotics for over 6 years now. Yes I am better in a lot of ways but others not so much.
I still sweat if I do anything at all. I mean it just pours off of me. When I use to have hot flashes I never sweat like this.
I have no endurance at all. I can't fold a load of clothes without resting several times. Can't carry anything very heavy.
I still suffer from air hunger also.
How do you know how long to treat. It seems like I am just stuck and not really getting any better or worse. And to make things worse I no longer have a LLMD.
Perhaps if you could give a little more info, you may get more ideas...???
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
A couple of your lines really struck a cord with me....even though I've struggled with lyme & co for years, when I noticed even less endurance and the simple things like doing wash would leave in resting??
I finally decided it was time to get a cardio doc involved, just to make sure. All the tests revealed 100% blockage in right cornary artery.
TBTG, my body had built a little vessel to by pass the blockage. All these years lyme & co had covered up sx that healthy people feel.
So please make sure some of your sx aren't your heart screaming for help.
Also there are many options if abx failed you. Six years is a long time. Have you thought of trying alternative methods to control the bacteria load, like herbs, rife, naturopath doc for detox of heavy metals and parasites?
Iowa, has support groups. Have you looked to see if any are near you?
I was 42 yr old when this nightmare began, much too young to think about heart damage.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
map1131 I have had both knees replaced and had a physical before each one. The last one I had done last April. Wouldn't the heart test they do then have showed a blockage?
I haven't tried herbs because I feel like no more then I know about them I would be wasting what little money I have on them.
I don't know of any naturpath doc and I could not afford one if one was even close to me.
posted
triathletelymie I am not sure what my doctor has treated me for. When I seen him he would always just talk to me and ask questions and when he was done he would write out the prescriptions. He never really told me much and maybe I never knewn what questions to ask.
posted
You know I started getting sick when I was in my 20's. It took over 50 some years and many doctors before I knew what was wrong with me. Finally found out I had chronic lyme when I was tested by the Igenex lab.
I am now 64 and I don't know what you should feel like at this age. Maybe this is as good as you get from treatment and the rest is just my age. I just know both of my folks were very healthy until they were in their 90's. They never slowed down until they were in their very late 80's.
posted
I am also in my early 60's and love what you said about not knowing what we should feel like at this age. I take a Tai Chi class at the senior center and find that most people have some issue/s.
I was also on antibiotics for 6 years, with some progress but not that much. I also developed positive lupus tests while in treatment.
Every time I tried to get off antibiotics, I got really sick, and my LLMD would tell me that I was one of those who would need them for life. I sought help from a functional medicine doctor (covered by insurance; like you, I have issues with cost), who helped me get off after explaining there is a 2-3 week withdrawal period when getting off long term antibiotics, partly because the meds are anti-inflammatory, and also because the immune system has become dependent on them.
I have been off for a few years now, and overall feel better off than I did on. There are residual GI and,in my experience, food allergy issues after getting off long term antibiotics. I can no longer eat quite a few things. But getting off dairy and gluten and a few other things also did more for my neuro problems than antibiotics.
If I were you, I would try getting off, but expect a few weeks of illness as you do that, and don't blame it on a relapse of Lyme, blame it on withdrawal. See how you feel in a month, then a few months, then a year. There will be other things that can help, that will become apparent or that others can tell you about, but you really don't have to go crazy with supplements and other costs, in my opinion.
Accepting limitations that remain and enjoying what you can do seems key, in the long run, to me.
Posts: 108 | From US | Registered: Apr 2012
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Sick, I am 65 and I understand how you can wonder if some of your mental and physical problems are due to age especially when it has been such a long time since you felt well.
But I am closer to well now than I have been in years and I feel really good. I am not running a marathon but I can climb two flights of stairs without collapsing - in fact, without losing my breath.
You need to pay better attention to what infections you have treated. What drugs have you been on? Profuse sweating is usually a sign of babesia microti.
Once you treat everything (don't forget protomyxzoa) you will get better.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
When I go off of the antibiotics I am fine for 2 or 3 months then I start to sweat profusely and some of my lyme disease symptoms return so then I assume I need to start back on the antibiotics again.
I have gotten over the terrible fatigue so I don't sleep all the time like I use to. I know that the doxycycline helped with that.
May I ask neuro problems was you having?
How did you know if you was over the lyme disease. Did you get tested again?
I appreciate any advice you have as I am at a point where I don't know what to do next.
Did you take any supplements that you thought helped you?
I know what antibiotics I have taken but I guess I don't know what co infections each of them treat. Is there a way of telling what each drug treats?
You say once you treat everything you will be better. I'm not sure what everything would consist of. Is there some where I could read about that?
I read as much as I can about lyme disease but I have problems with my memeory so it really don't much good. As far as I am concerned that should be the doctors job. I don't feel like I have had a very good LLMD but it was the only one I could go to.
Thank you Thank you Thank you! Bless your heart. What a wonderful site you sent me. I started reading it but will have to read more later. I seen it told what drugs are used for different co infections. I needed that so much. I am going to print some of it as my memory is terrible. That way I can look back as needed.
I know we should be able to find the answers by ourself but some us are sick enough we just can't do that.
I only hope I can help someone as much as you have helped me.
Best wishes! PM me any time. I am a social worker by profession and I love helping people!
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
sick,
PLEASE look into treating for parasites. I didn't start getting well until I treated this often overlooked co-infection. Parasites/worms can play a MAJOR role in Lyme disease.
Google parasite symptoms and check the symptom list at Humaworm. One mos of tx is never enough and has to be ongoing till symptom free and then maintenance. It can take saeveral yrs to get rid of parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
posted
glm1111 Oh boy I have avoided that one. I have already been on antibiotics for years. What did you use to treat parasites? Will the Rifle get rid of them?
Lymetoo I thought about Babesia but you know I only sweat on my face, hair and neck. I thought you would sweat all over with it. Do you think the Rifle will get rid of parasites?
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I used antiparasitic herbs like Parastroy, Humaworm, Hanna Kroeger Wormwood Combo, cloves, digestive plant enzymes and salt/c.
The antiparasitics and salt/c also worked to get rid of my babs and bart. To my knowledge, I don't think rife alone will get rid of parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
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
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Depression
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Sick -- I also think your symptoms sound like Babesia. I sometimes had full body sweats, but often just my neck and head would sweat.
Generally babesia is treated with Mepron or Malarone -- sometimes quinine drugs are used. It's hard to get rid of Babesia -- some strains of it are worse than others... but MAN I felt better after we addressed mine.
Do you get head pain?
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I have subclinical hypothyroidism. All my regular docs said my thyroid was fine according to results but I went to an integrative doctor that did some additional testing and found I was hypothyroid. I am on Tirosint now. I was on Armour before that but the Tirosint is working out better.
Many docs say thyroid is fine b/c they don't do the additional testing when in fact you could be hypothyroid and treating can make all the difference in the world.
Low Dose Naltrexone can also be very beneficial. It is an immune modulator and is used for Lyme, MS, Parkinson's and other autoimmune diseases. Have to start low and slow w/this.
Have you addressed yeast at all?
All the other things I mentioned like the MTHFR, KPU and HLA-DR are detox issues. I found out I have MTHFR and am homozygous C677T for that which means I can't convert folic acid or B12 to it's active, or methylated, form so I have to supplement these in their already active/methylated form.
Being deficient in these can cause serious symptoms. I have noticed improvement since starting "B Supreme" by "Designs for Health". If you are unable to get the testing done to find out if you have this you'd have nothing to lose by supplementing and see how it goes. It wouldn't hurt. Just make sure you don't take a regular B Complex supplement. It has to be in it's active form and I can assure you the one I mentioned is.
Are there integrative, alternative, osteopathic, homeopathic or naturopathic doctors in your area that take your insurance since $ is a factor? Don't waste your time w/conventional doctors. Good luck!
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
gmb
Unregistered
posted
I too never really had night sweats.. so I thought most of my symptoms were Lyme and Bart.
I started treating Babs first and symptoms flared from there. My new night sweats are as you describe, only lightly on my face, neck and hair.
I also occationally sweat in same areas durig the day when under minimal physical excersion or high stress.
Its tough to determine cause with so many things wrong with us. I just call it a big science project trying to get well.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Sick, listen to glm1111. The woman is wise. I used to ignore her posts, but she turned out to be right with me. She is so right, it's simply not worth it to ignore this issue. I've made more progress treating parasites (in just a few months) and detoxing heavy metals than I ever did on abx.
IMO, parasites are a HUGE issue with lyme. Unfortunately, most of the lyme docs don't even have a clue about them, so we are all left to handle them ourselves.
It has been my experience that many people think because we live in a first world country that parasites don't exist here. Wrong. They come with the tick, food, water, etc. Parasites are just as much a part of nature as we are. I just got higher doses of them from ticks.
Also heavy metals. We have to detox them. Gigi knows more about metal detoxing than anyone I've ever spoken to or chatted with on line. Another very wise woman. I would read every single word she posts. IMO, there is a heavy metal parasite connection that should not be ignored to get well. Gigi explains this really well.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Rife type frequency treatments totally eliminated Babesia in my wife. It took me three rounds of treatments to do it, but I was pretty green at it at that time. It would be faster for me now.
I have never used it for parasites.
It has brought my wife to 95 percent normal by greatly reducing, but not eliminating Lyme. Not sure of Bart is completely gone, but if it is there, it is not causing her any symptoms.
It will not cure everything, but for a one time investment, it is probably one of the cheapest treatment methods you can use for multiple infections, for as long as needed.
I still run the frequencies once in a while if she starts getting joint pain, but it is far better than the limited alternatives available to her.
I hope you can find some effective way of killing what sounds like Babesia.
Good luck
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
posted
D Bergy What caused her joint pain? I didn't know it would help that. sick
Posts: 538 | From Iowa | Registered: Apr 2006
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Lyme mostly, but Bart also caused some pain and swelling in the ankles.
Her first and main symptom was joint pain which was worst in the knees and ankles.
Most all joint pain is caused by pathogens of one kind or another. If the pain came shortly after a tick bite, you can narrow down the list of pathogens considerably.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic