posted
Hi there, this my first post here, and I'm desperate. I�ve learnt so much from reading this forum and hope you can help me now ...
Short background info: I'm from Germany. My symptoms started in the summer of 2010 (a few weeks after a tick bite):
- urinary urge - parasthesias - numb shin - gait problems/balance issues - skin burning - waking up in the middle of the night with my heart racing and a scary "body on fire" feeling as well as elecric-shock-like pains shooting through my body - hands falling asleep at night - drooling while sleeping - severe shortness of breath - ice-cold hands and feet - sweating - heart pain - fast resting heart rate - muscle pains - crushing fatigue - brain fog - insomnia - and lots of other symptoms, the list is long.
After 8 months of seeing a plethora of doctors (neurologist, orthopedist, cardiologist, endocrinologist, etc.) and tons of online research, I diagnosed myself with Lyme disease in March 2011. I ordered a CD57 (which was at 0!) and found myself a Lyme specialist.
He started me on Minocycline, Plaquenil and Cholestyramine. My symptoms improved dramatically within the first 2 months, and though I continued to have setbacks, I felt much better by September 2011 (CD57 at 129 at this point � all other Lyme-related tests and co-infection tests negative).
I kept educating myself about the disease, watched hundreds of ILADS conference videos, read tons of books, and thousands of posts on this forum.
When my abdominal pains started in the fall of 2011, my LLMD was solely focused on antibiotic treatment (far removed from a good ILADS LLMD). He didn�t care (or know!) about candida issues, probiotics, supplements etc.
To cut a long story short: I found a new LLMD a few months ago. He�s much better than the old one, but I'm not sure about his treatment style yet - too early to say (he did diagnose my messed up adrenals and mitochondriopathy, but seems to go super slow in his treatment approach).
Because many of my symptoms were under control, and my gut seemed to be really messed up, we stopped my antibiotics, and started me on an anti-candida protocol a few weeks ago: oral amphotericin B (worked brilliantly, and my abdominal pains receded).
(Just FYI: IV amphotericin B can be really dangerous, but the oral version is supposed have almost no side effects).
Unfortunately, some of my Lyme symptoms started to creep back in: hands falling asleep at night, stiff painful fingers in the morning, skin burning, fatigue, brain fog and the general feeling that something's off).
And after six weeks off of antibiotics (and during the last week of my candida treatment - which, oddly, lasted only 4 weeks!) a new scary symptom emerged. I�ve been dealing with this for 3 � weeks now and it is � to put it mildly � scaring the **** out of me:
It is a kind of dizziness/vertigo/disequilibrium, without truly being dizzy. It is there CONSTANTLY while I�m WALKING, with almost every step I take (no problems while I�m sitting or lying down - except for maybe a super slight dizzy feeling). Nothing is moving in front of my face, no "room spinning" sensation at all.
Instead, I�m off balance. It�s a slight rocking motion under my feet while walking. But the truly scary part is the feeling of having a magnet inside my body which is pushing my feet into the ground or pulling me backwards and then pushing me forwards.
Sometimes it feels as if my heels are being lifted up, sometimes as if a magnetic wave is running through my back or a magnet grabbing me by the neck. Other times it feels as if something is pushing my feet up and at the same time, pushing my head down. Meanwhile, there�s always a slight head pressure.
My LLMD thinks it�s related to the most superior (first) cervical vertebra of the spine (the atlas) and rules out co-infections because my cytokines (TH1/TH2 responses, TNF alpha) are "all fine". He also thinks my Lyme currently isn't "active".
I, on the other hand, think it could be babesia or bartonella. We just found out that I have a very low but positive bartonella titer (previous tests were negative), and I�ve never been treated for co-infections!
Or maybe it's a candida issue ...
I saw an ENT last week (no problems with my ears) and had a brain/neck MRI last Friday (which was fine).
This new symptom is truly scaring me and I was wondering if any of you had any input on this one?
Thanks so much!
PS: I'm also dealing with terrible insomnia (probably because of my messed up cortisol levels, adrenal fatigue issues or maybe because of some untreated co-infection).
[ 07-30-2012, 09:04 AM: Message edited by: Nula ]
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Check into treating for parasties/worms which can play a MAJOR role in Lyme disease and is often overlooked. Google parasite symptoms and check the symptom list at Humaworm.
Drooling is a BIG sign that you are infected with parasites. Treatment has to be ongoing until symptom free, and then a maintenance dose.
Some people on here are having success with Ivermectin, and some are alternating that with antiparasitic herbs and the salt/c protocol
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
Wow, you have a lot going on. Hang it there. Just when you think things are going to get better with one symptoms it changes and off LYme goes on another tangent. I ask my LLMD what to expect from Lyme. He told me it can attack and affect every part of your body including organs. I just about cried. The worst part is that is exactly what has happened to me. I don't know what to tell you. I do go to a chiro/neurologist that has helped my brain issues. You might look into that.
Posts: 620 | From Ks | Registered: Oct 2011
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Thanks so much for your response. Because of your posts (I've read many of them), I actually ended up sending a stool sample to Metametrix in the US, they didn't find any parasites.
I still pushed the issue with my LLMD but he brushed it off, saying that "lots of parasite treatments" are "very dangerous" (he mentioned Ivermectin). I'm just scared to start treating parasites on my own - without medical guidance.
How can I do this safely?
Cozynana,
Thanks for your kind words. I'm actually planning another neurologist appointment - but 4 of them misdiagnosed me, so I'm not looking forward to meething another one .... :-(
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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posted
In my opinion the treatment style is pretty clever, I think that there is a lot of collateral damage done from heavy herxing. I was treated very aggressively and ended up with extremely high inflammation markers and such. CSM has been a huge help for me, wish I didn't start it a year and a half into treatment.
It sounds to me (I am not a doctor) like you have Bartonella the insomnia and limbs falling asleep, a lot of your other symptoms are ones that can overlap. The Mino hits Bart to a certain extent and that could be why you were doing better on it. I got that dizziness too, I don't know which infection it's from. I have the the B's.
I think it is ultimately an inner ear thing. I think that any of the infections can cause it. Antibiotics too. My 2 cents Posts: 845 | From Northeast | Registered: May 2011
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Yes, that's what I've been thinking - that it could be Bartonella because of my hands falling asleep. Mino eradicated a lot of my symptoms but never really touched the "hand issue" (which comes and goes) or the insomnia (which is constant).
As far as the inner ear thing is concerned - the ENT claims it's not related to my ears, and the radiologist said the MRI clearly showed "no ear issues". Still, I'm on the same wavelength as you ... thinking of Bartonella and possibly an ear issue. But wouldn't the ENT or radiologist see something, anything if something was off in my ear?
Just so exhausted ....
Thanks for your replies. They are greatly appreciated.
Anyone know if Bartonella can be active, despite my cytokines being normal?
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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You wrote you also have the dizziness? Do you have that kind of (magnetic) pushing/pulling feeling as well?
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
At one time or another, I had every one of your symptoms except hands falling asleep. I had more than that too, but many have improved with treatment. I ended up with bart, babs, RMSF, myco, and more.
It sounds like you have bart, babs, and I don't know what else.
Is your doc an ILADS doc? An ILADS doc knows to treat based upon a clinical diagnosis (symptoms). Just because your bart test was minimal, doesn't mean you have a bad case of bart.
Mino gave me vertigo (had to go off of it). It is notorious for giving people inner ear problems.
Insomnia is common for lyme sufferers. Have you read the book "Adrenal Fatigue" yet? Salt, vitamin C, and more.
My insomnia improved once I started working on my adrenals. I would look for natural herbs here. Others have posted about it.
Lyme sucks so many nutrients out of us. We have to supplement. At least I have had to.
Have you checked out Burrascano's 16th protocol yet? It's the first line under Medical Questions here.
Dr. B. has great advice for lyme sufferers. He tells you what supplements you need.
-------------------- --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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posted
Hi Nula, I'm not so sure that Bartonella increases cytokines, I know that Lyme does for sure. You know there is so little that is known about these infections, especially with mainstream medicine. Really, who knows what to look for when they are affecting an organ (ears)? I would think it would be pretty unlikely for mainstream to find an answer for you.
It is really a tough situation for all of us, there are no answers, just guesses. I have had that intense dizziness that you are talking about. I had a very big Bartonella relapse when I was experiencing that symptom.
Try not to let this stuff get to you too much, when one symptom goes away another appears. That is the nature of these crazy infections. Easier said than done right? I struggle with this all the time. When I don't get myself wrapped up in the what if's I do better emotionally.
We still have infections that are still causing symptoms, we know what we are dealing with (for the most part) we will get better at times, and maybe also worse. At least we know the cause, and also what actions that probably will yield results. Unfortunately for us, this is our deal.
I want nothing more than to be free of this, and there are times I succumb to my fears, but when I don't, I generally get through it a little bit better. Try not to be scared.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I also agree with Catgirl, there is a very good chance the dizziness was caused by the Mino, I was on Mino too.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Thank you all for responding and trying to calm me down. It�s helping :-)
Catgirl, I had dizziness while taking Mino, but that was a mild and different kind of dizziness. At one point I was pulsing Mino and I was never dizzy on my off days.
This magnetic pushing-pulling off-balance feeling actually started 6 weeks after I stopped taking Mino. That's why I'm thinking it's not related. I could be wrong, though .... Do you think dizzy symptoms could start 6 weeks after getting off Mino?
My LLMD is not an ILADS doc. I live in Germany and the "best" we get are LLMDs that are "ILADS friendly". Still, the treatment style here is very different .... I'd love to get treated by an ILADS doc!
I�ve read everything (and literally internalized everything!) that Burrascano has said. Have gone through many ILADS conferences videos, read all the literature, and I've been trying to find a doctor who treats me according to ILADS guidelines - which seems to be an impossible endeavor in this country.
Doctors here are mostly focused on antibiotics � and that�s it. If we�re lucky we get a few vitamins, antioxidants and CoQ10 thrown our way � It�s very frustrating.
I�m thinking I might have to self-treat. And the Burrascano guidelines might be a place to start. I�ve been pushing to get certain meds and supps, but no luck so far ...
RC1, thanks for your encouraging words. I'm always trying not let it get to me too much. I've been dealing okay with most of my symptoms. There's anger, sadness, and frustration of course, but I generally try not to panic. However, this new symptom has really freaked me out. Am trying to calm down.
How are you treating bartonella? Azithromycin? Rifampin? Levaquin? Herbs?
Catgirl, mycoplasma is also something I've been having the back of my head. Mostly because Burrascano once said that people with a CD57 below 20 (I think) generally have mycoplasma. Mine was at 0 when I was diagnosed ...
I've read the book "Adrenal Fatigue" - by James Wilson, right?
My new LLMD had me do a salivary test, which found messed up cortisol, sertonin, glutmate, GABA levels and other stuff. But so far, all he's given me is B-12 (sublingual), Ubiquinol, and L-carnitine. Stuff, which is, I guess, addressing my mitochondria, but not exactly my adrenal fatigue issues ...
I'll talk to him on Thursday (phone consult) and will explicitly ask him about his treatment plan. (I hope, at this point, I'll sound calm and not so tightly wound ...)
[ 07-30-2012, 12:00 PM: Message edited by: Nula ]
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm sorry, Nula, I had to run a bunch of errands today...
I am no doc, and don't know much about plaquenil or cholestyramine. What I can tell you though is that my lyme specialist told me that when abx are combined they do different things (vs. separate). Maybe some of that is going on with you? I dunno.
There is a doc in my state who puts everyone on plaquinil and biaxin. I am not sure how much that covers, but I imagine at least lyme.
I am not sure about your pushing pulling off balance feeling. I know that off balance for me was babesia. I walked really funny (strange gait), like a mummy, when I was herxing. I walked really funny pre lyme diagnosis too. I also felt like I was going to tip over a lot, and did at night. I also had weird air hunger(still do sometimes) and walked into walls.
I am also not sure your meds are for babs, which to me, it kind of sounds like that's what's currently bothering you. But, again, I'm no doc. Maybe it's a reaction from your current meds, or maybe it's babs progressing, or something else.
Your cold hands and feet could be that you are low in magnesium. Most lyme patients are.
As far as urinary urge, do you mean frequent urination? I have this problem, especially at night. It's gotten better (along with insomnia) with adrenal herbs and melatonin though.
And dizziness--I had MAJOR dizziness on mino. It lead to vertigo. Mino does this.
Generally, an ILADS doc asks what are your worst 3 symptoms whenever you go back to see them (excluding the first visit). That gives them an idea of what is rearing its ugly head so they can focus on it.
That said, the first visit is long and necessary, as it gives the doc the opportunity to determine what you have, and provide you with a protocol.
Currently, I'm only focusing on two co infections, along with lyme, because they are bothering me the most right now.
You may be be able to find an ILADs doc to do a phone consult with you (I'm not really sure). If that's the case, I would try calling the heavy hitters (the ones that go to annual ILADS conventions).
It's probably more likely that you might have to visit one first though, and then do phone consultations after that.
I can tell you that babesia is serious stuff. It is not something you want to just supplement and hope it gets better (not that you are). You really do need some guidance, and best case scenario, from an ILADS doc.
There are some alternatives that some people do for lyme and co infections. But you really do need to get some type of assessment as to what you have first.
I feel for you, especially since there are no ILADS docs where you are at. But I believe there is a good alternative doc in your country who treats lyme.
I can't remember what he uses (think it's a bionic 800?). If you use the search button at the top of this page--it's right below "Post a poll" you can use it to search anything here.
Hang in there Nula. I will answer as many questions as I can for you. Hopefully others will pipe in here.
-------------------- --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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so... are you on MINO now?? Yes, it causes terrible dizziness
My dizziness went away with babesia treatment.
WELCOME!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Nula, you can always try the alternatives. Looking back, I wish that I had tried the Salt/C protocol first, or even Byron White or Cowden's herbs. And I probably would have added in an antimalarial for the babesia.
But other people say you need to have abx first, so I don't really know. For me, and only me, I wish I would have tried the above, because abx ruined my gut.
You really do need to get diagnosed first though, so you know what you need to focus on.
You will get better with proper treatment. Just hang in there. :)
-------------------- --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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posted
Finnally getting the chance to respond. Symptoms have been tough.
Catgirl, I'll send you a PM.
Lymetoo, thanks for the welcome :-) To answer your question: The dizzy symptoms started 6 weeks after getting off of Mino.
Mino has helped me a lot (especially with my skin burning issues, heart racing and shortness of breath). While on it, I sometimes felt a slight "swaying" feeling, but nothing bad. So considering all that, I don't think the new symptom is Mino-related.
Also, my current symptom is not so much a feeling of dizziness but a feeling of imbalance. It reminds me of a babesia description I found in the book "The Lyme Disease Solution": "like walking off the top of a mountain into a cloud".
I wrote the above post 2 weeks ago. Since then I started having really bad headaches. An entirely new symptom, since I've never been plagued with headaches before.
So I think it's babesia coming out. I also think I'm dealing with bartonella.
Lyme doctors here in Germany don't generally want to treat the co-infections unless the lab test comes back positive. I've spent enough time watching ILADS conference videos to know that this attitude is ... forgive my frankness ... bull****.
I tested (weak) positive for bartonella, negative for babesia. Doctor thinks bart and babs aren't my problem ... I think he's wrong!
I'm now looking into getting treatment in the US, since it's hard to find a doctor in Germany (even an LLMD) who's not entirely focused on blood tests. German LLMDs will treat Lyme without a positive test result, but it seems they won't touch the co-infections unless you test positive.
Thank you all for your help and input. I'm really happy to be here.
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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posted
Your symptoms are so much like mine. I have never tested + for coinfections except viruses. I really wanted llmd to look into it more, but he refused. The dizziness I had just seemed to go away on it's own, I had no idea of it connecting to any medication or treatment. The bad headaches were diagnosed as migraines, but to me they were not. A migraine doesn't last for months. But, some of the meds would help, just not cure. As far as the burning and numbness, nerve damage is what I've been told. The neuro has done multiple tests both blood and EMG, MRI, spinal taps X2. One had told me I had MS and the latest one neuropathy. They don't believe any of the symptoms were lyme related of course.
My brain MRI showed lesions; however my cervical spine MRI did not. So, my 2nd opinion on my MS dx was I did not have it, so I quit the MS shots. It was her belief the "migraines" had caused the lesions and the numbness and tingling and burning I felt were due to low b-12.
My current neuro has yet to discover the "cause" of my neuropathy, but of course ruled out lyme with his so called "titer" test.
I really believe more coinfections are the cause of my incomplete treatment, and probably yours as well. How to figure out which ones I don't know. I'll be curious to see what you find out.
The abx I took that helped my lyme were biaxin, doxy, and for a while I was on mino too. I had to be taken off it as it caused "staining" on my skin. They look like bruises all over and went away a few months after I stopped the mino. I had skin reactions from doxy the 1st time he tried it, but was able to manage it later in treatment.
I was on these treatments for over 4 years and saw massive improvements. When I began to worsen again the doc refused to change any of the treatment, so I stopped going.
Best of luck and I hope you are able to get answers! Maybe you can find a great doc. Where I am they are almost non-existant.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
Oh and I was taking probiotics the entire treatment period. I never had yeast problems. FYI
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I also had a very weird off-balance feeling. No spinning but I felt like I was tilted at a 45 degree angle. This was before I was diagnosed and yes, it was one of my freakiest symptoms.
For me, the off-balance feeling was probably from Babesia. There are herbs that can be used to treat it, including Arteminisin and Cryptolepis, and they are available on the internet, but I'm not sure if they would "cure" it alone without antibiotics. And you would want to discuss it with your doc of course because they are very strong.
Posts: 1737 | From Virginia | Registered: Aug 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Cold hands and feet can mean hypothyroidism. Have you had this checked? Many lymed people have thyroid problems.
Best lab now for bartonella testing is Galaxy. But I don't know if they take blood from outside the U.S. You might look into this.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
When my C1 vertebra is out of place, I can be dizzy. My chiropractor fixes it right away, upon my reporting it to him. Just a guess here, since Lyme can affect the neck.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I have had magnetic pushing and pulling feelings, though not in my legs or feet. Mine are more in my head, neck, chest, and throat, causing breathing and swallowing difficulty. I have babesia, and the symptoms also increase when I am toxic, which is most of the time. Hang in there.
-------------------- "I will never leave you nor forsake you." Joshua 1:5 Posts: 13 | From Arlington, Virginia | Registered: Feb 2012
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posted
let me save you alot of time, listen to gail and treat for parasites regardless, if they found them or not, ive had my atlas adjusted 30 times and nothing, dont waste your time
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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posted
We're all different in what's going on with us and what we respond to - I've found that you just have to try stuff. Short of having a test with clear markers, you don't know till you try the treatment and see if it works.
Sorry the C-1 adjustment didn't work for you, Derek - means something else is going on. For me, getting my C-1 adjusted stops dizziness.
Posts: 13116 | From San Francisco | Registered: May 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Like others have said, I've had a number of your symptoms, but the pressure feeling on your head surfaced when I began really targeting coinfections.
The dizziness still surfaces occasionally, but thankfully not too often. In a herx, all these things are likely to manifest.
Some meds made the symptoms worse, but I really can't think of which ones they were.
Welcome to the boards. This is a fantastic group of people with a lot of caring and wisdom to share.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I have had something similar but not to do with walking. There have been occasions where I am sitting down and suddenly it is like a magnet in my forehead and my head almost slams downward ...it is very sudden. I have hit my face on the keyboard. There is always a slight "dizzy" or "vertigo" feeling an instant before and for about 20 seconds after. Also.. I have had times where something happens only when I am talking. Suddenly my hands feel SUPER HUGE.. like giant gloves! It is the strangest, scariest thing! I will suddenly feel a bit faint and very light..like I am about to start floating and I immediately look at my hands because it feels like they are SO super huge! (of course, they look completely normal) I also do have problems with my cervical spine. My atlas was always in need of adjusting when I was able to see a chiropractor and I have neck pain. There may be a correlation. I have never tested positive for Bartonella but I strongly suspect that I have it.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Bart, no question from what I have seen in treating my wife
Symptoms get much worse initially when it is treated and die off occurs. It will improve once the Bart is reduced.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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