Well after over 15 months of symptoms and 9 months of treatment, not much has changed. My biggest issue is with my head/brain. I can't seem to make any headway with it. For 12 months straight now I have had brain shocks/zaps when trying to fall asleep at night EVERY SINGLE NIGHT, severe brain fog which has progressed to short and long-term memory loss.
Although I am out of the @#$%hole of a year ago where I had life-threatening heart arrhythmias, breathing problems and seizures, those symptoms seemed to abate on their own, even prior to antibiotics. It's the relentless head stuff that I can't seem to touch.
I am on my second LLMD and have done numerous meds...starting with ceftin/biaxin and currently on cipro/bactrim, with numerous other orals (rifampin, mepron, zithromax, omnicef, flagyl, plaquenil, welchol) and 10 weeks of IV rocephin in between. Oh, and of course, numerous supplements.
Any thoughts from anyone as to what may help to get at the head stuff?
'Very discouraged today......
My apologies for whining!
-------------------- ? 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
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I do detox. Welchol was also supposed to help with that I think, which I took for several months.
Had rifampin several months ago and cipro now for bart.
Parasites...'never did anything for those yet...
Tested negative for babs and no symptoms of it, but treated for it with 6 weeks of mepron anyway...no herx no improvement.
-------------------- ? 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
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quote:Originally posted by triathletelymie: Tested negative for babs and no symptoms of it, but treated for it with 6 weeks of mepron anyway...no herx no improvement.
You say have no symptoms, but pretty much all of your symptoms sound like Babesia to me. The heart stuff is very common with Babesia. Shortness of breath- a hallmark symptom of Babesia. Also, the drunk/drugged feeling we have discussed- a hallmark symptom of Babesia.
What tests have you done for Babesia? I tested negative 3 times before having a positive FISH test from Igenex as well as a positive IgM result for Babesia Duncani.
Posts: 306 | From NY | Registered: Sep 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I got rid of babesiosis taking Bactrim and pulsing artemesinin. It took a long time--nearly a year.
What does the doctor say about the head/brain symptoms?
I understand that the first symptoms to come are often the last to go, so that may be what is happening with you. It certainly was true in my case.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hoops...I guess that you are right...'could be Babs. But...I had the complete babs workup with Igenex...all negative...and I never had night sweats at all and the central sleep apnea only lasted about six weeks a year ago.
TF...my LLMD doesn't say much about the head stuff...I bring it up at every visit. The head stuff for me came after the total autonomic nervous system dysfunction. And he did not mention art...with the bactrim or with the mepron that I had been taking.
-------------------- ? 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
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Triathelte Lymie-
Head stuff as you describe and more is my number one symptom..has been for over 3 years.
I was able to make a dent in it with 6 months of IV Invanz.
Unfortunately, since i stopped Invanz the head stuff is back to square one....
nothing else touched it. hope that you find your magic potion.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I still think another Igenex Babesia workup would be worth it. Make sure Microti and Duncani are tested for. Like I said, I tested negative numerous times before a positive test. I also never had night sweats.
More mepron could be your answer, as one month of treatment is not sufficient enough. Just my two cents. Good luck!
Posts: 306 | From NY | Registered: Sep 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Do a round of Humaworm if your doctor is okay with it. Or, do some research on it and see if you can make your own decision. I did it a few months ago and was surprised at how much better I felt. I will probably do another parasite killing soon, just have figured out which one.
Have you ever traveled out of the country? Eat at salad bars(here)?
Where in Pennsylvania? Eastern PA has it's issues according to another post. Do a search on eastern pennsylvania. How much wifi, cell phone, use is near you? I'm actually starting to believe there is something to EMF sensitivity. You may want to look into too.
Good luck. Let me know how it goes.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
I'd also keep in mind that many people have Babesia without testing positive for it. A negative test result may not mean anything.
I did test positive for it, but honestly didn't think I had it before the test showed it. Since then I've come to feel that Babesia comes up in a variety of ways -- more than just the "usual" symptoms. For me, there is a distinct mind/emotional level to it, beyond the air hunger and occasional night sweats I get.
If you do have Babesia, whether it is directly causing your current main symptoms or not, it could be blocking your progress in treating the lyme.
I'm sorry you are still struggling so much with all this! I know it is NOT fun.
Posts: 232 | From Oregon | Registered: May 2010
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posted
Brain zaps/fog--have you recently taken SSRI's? I was put on this about a year ago and had those symptoms. Went away but took a couple of months after I stopped--they never worked and now know why.
Posts: 7 | From Union County, NJ | Registered: Dec 2010
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My brain shocks/zaps started around February 2010...no relief AT ALL from them yet. They happen EVERY SINGLE NIGHT when I am trying to fall asleep. I am wondering...could they perhaps be some kind of seizure?!?!?
Yikes!
-------------------- ? 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
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posted
Are you yeast-free? I did read that when yeast messes with the nervous system it can cause seizures.
-------------------- Not officially diagnosed Posts: 15 | From AZ | Registered: Sep 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Could untreated mycoplasms have a role? Have you read any Garth Nicholson? He has some stuff on youtube which is very informative. I'm discussing the possibility of KPU with my son's ILADS doc. He has sort of stagnated in treatment after some improvement. I'm sure you have read other posts on it. Last night I went through and read what everyone has posted on LDN. I had tried it before getting diagnsed Lyme and am thinking I will try getting back on it since new insurance covers it. LDN might be an idea for you. I hope you get it figured out.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
This also happens with anxiety sometimes. Have you ever tried an SSRI or xanax type drug?
Posts: 306 | From NY | Registered: Sep 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
EVERYONE with Lyme needs to treat for parasites, if they want to get well. One round of any antiparasitics is never enough.
You should stay on them until you are symptom free and then do a weekly maintenance dose FOREVER as suggested by Hulda Clark.
If just one egg is left, th cycle will start all over again. The antiparasitic herbs are alsao antibacterial and antifungal.
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
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posted
Did your doctor ever check to see if you have high levels of metals (i.e. mercury, lead) in your system? Just a thought. My LLMD seems to think that taking care if this issue is very important and makes a big difference (if it is an issue for you, that is).. Just something to consider.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just want to let everyone know that I never treated for parasites, and I got well.
So, I can't agree that EVERYONE-- and that means every single person with lyme, needs to treat parasites.
I had lyme, babesiosis, and bartonella undiagnosed for 10 years.
In March, it will be 6 years since I completed my treatment and I am still symptom free, enjoying my life.
Posts: 9931 | From Maryland | Registered: Dec 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
TF,
That's great that you got well and never treated for parasites. Perhaps some of the meds you were given inadvertantly took care of parasites that you may have had.
FYI, Dr. K. treats ALL of his patients for parasites, and given his knowledge and excellent reputation, I would think he has a reason for doing this.
You said you have been symptom free for 6 yrs which would be since 2004 if my math is correct?
Just wondering why you would have joined a Lyme support group just three yrs ago in 2007 if you had been enjoying your life for the last 6 yrs.
Why dissuade people that are chronically ill and could possibly benefit from treating parasites? Why would that be helpful to anyone?
P. S.
Just read on one of your previous posts that you took an extended dose of artemisinin, which is an antiparasitic.
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
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I completely relate to this. I can't seem to get rid of my brian problems. My other symptoms I could live with if I had to. I have not tested positive for Babs and I do not have the classic symptoms either. I did try Mepron for a while and it helped my brain. Unfortunately it came back when I went off the medicine.
I have heard if you have an "odd" headache that could mean Babs. A feeling of pressure or a sensation in the back of the head. I have always had an odd sensation on the crown of my head. This makes me think of Babs.
Posts: 2232 | From USA | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Gael, I don't think it is helpful to anyone to make blanket statements that are not true.
I and 5 of my friends who all had lyme disease all got rid of our disease without doing parasite treatment.
Why tell people that they have to do a weekly parasite treatment FOREVER for the rest of their lives like you said in your post above? (Jan. 11 at 7:13 p.m.)
Sometimes people don't realize how scary these kinds of statements can be to new people.
By the way, I have been on LymeNet for over 7 years. I used to write PMs to people back in the day when you did not have to register to PM people on LymeNet. I just decided to start posting publicly in Dec. of 2007. So, you see, I really am all that I say I am.
I don't know why you would want to infer otherwise.
I know you feel very strongly about parasites. Let's let everyone tell their story, even if it doesn't line up with what you believe.
Posts: 9931 | From Maryland | Registered: Dec 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
TF,
It's the advice of Hulda Clark, to do parasite tx forever. It is also on the treatment plan of Dr. K. who treats all of his patients for parasites.
It was never originally my idea, but the advise of some very well known physicians and researchers. A lot of people on here are having a very difficult time getting well because they have chronic Lyme.
You said you didn't do parasite tx, but arteminisin is a well known antiparasitic. Are you aware also that Willy Burgdorfer found Adult Filarial Worms in the ticks he dissected?
Isn't it possible, that this much overlooked parasite that some people may have and not know it, are chronically ill because it's being so overlooked?
I know it was in my case and it almost killed me. BTW, My LLMD followed Burasccano, however the parasite angle was never addressed and it almost killed me.
People need to be informed as to ALL possibilities of what could be making them sick, regardless of how scary it sounds. Ignorance is not bliss.
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
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi Triathletelymie-
Have you been diagnosed with encephalopathy? Please look up the symptoms associated with this. I had severe encephalopathy and the only thing that worked for me was IV Rocephin.
I was reading the other day about lyme in the Journal of Arthritis and it was discussing both encephalopathy and arthritis. It said that it can take months to years to fully recover from encephalopathy after treatment depending upon the severity of it.
I wish I had that information when I was starting out on this journey as I wouldn't have treated with so many other abx for so many coinfections for which I tested negative. The lingering symptoms from the encephalopathy were horrible....they did, though, finally resolve completely with time...
I'm not saying you don't have a coinfection...I'm just saying that you need to determine if you have encephalopathy.....
Good luck to you....
Posts: 1155 | From Southeast | Registered: Oct 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
tri,
You may want to consider this section of the Burrascano guidelines talking about Bartonella-like organism (BLO):
"Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and confusion.
(skipping a few sentences). . .
Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is very insensitive. Therefore, the diagnosis is a clinical one, based on the above points. Also, suspect infection with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with significant course of specific treatment.
The drug of choice to treat BLO is levofloxacin."
If you have never tried levaquin, you may want to now give it a try. I hope that it will work to get rid of these terrible brain symptoms for you.
Load up on magnesium for at least 2 weeks before beginning levaquin. See more about that here:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Parasites and Heavy Metals also considered . . .
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Triathletelymie,
Parasites may or may not be an issue for you. Obviously, they are a problem for some lymies and not others. Best way to find out is take an antiparasitic and see what happens.
I kept reading on lymenet about parasites but never considered having them myself. After LLMD put me on artemisinin as part of babesia treatment, I started passing worms. Four months later, I am still passing them. It is a battle within itself.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I had neurolyme and levaquin and cipro made things much worse for me brainwise. They fried my brain. I now avoid these abx like the plague.
Everybody is different in their reactions to meds. My brain is now back to normal after 3 years of these abx: doxycycline, nystatin, and Ceftin, and some Flagyl. I take laurcicin, a supplement, as well.
Someday, I hope to get off of abx. It's been 3 years.
Good luck. CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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-------------------- ? 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
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