hi all. I'm posting on my gf's behalf. She has had lyme/cfs for 6 years, diagnosed with lyme for past 3. great llmd, abx fr past 3 years (oral and IV), so many many supplements, herbs, vitamin/superfood drinks, detoxes, probiotics, reflexology, thyroid meds. cant think of what else. she tested lyme and co-infection free using kineasology by llmd and was infact doing much better for several months twice in last 3 years.
Now energy levels completely bottomed out, worse energy than ever before and crashing almost daily, cant stop it. pain has not returned, which is something we are very grateful for. another good GI/herbal doc reckons its adrenals but support for them does not improve situation. llmd thinks it could be babesia (we agree that some symptoms do match - but only some) but 1 week on abx levaquin and mepron and no sign of herx at all. we think false diagnosis as normally she always had strong immediate herx when on abx. stomach problems from mepron starting up again
dont know who to turn to anymore, we cannot stop her crashing daily and cannot get help from doctors, none of them know what is wrong this time. anyone else been 'lyme free' or in remission yet continued feeling sick with total lack of energy resulting in crashing?
thinking of stopping abx and starting from scratch (as cfs sufferer if lyme truly has gone!), scared as hell with loss of treatment direction. sorry for long post/rant.
Posted by bettyg (Member # 6147) on :
welcome to you both!!
great job on writing and breaking up for your text for us neuro folks!
i've NOT gotten to point of remission, etc. so can't offer personal experience but this will bring this up for others to read.
right now with Christmas upon us, very few coming to check/read the board, so have patience as others will give you valuable input.
you might do a search, found at top, about crashing it and look only in MEDICAL forum ok!
crashing medical subject any date leave membership no. blank; click send
read all posts/replies .. if none, use BACK button and change subject to text; leave everything else, and click send. *******************************
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
Posted by JKMMC09 (Member # 15795) on :
I am so sorry for what you're going through.
Besides kinestiology, what do her Lyme tests look like? Does she still test positive (or have specific bands) for Lyme on her Western Blot from Igenex Lab?
I would not rule out Lyme based on Kinestiology when there are symptoms. "CFS" is just a diagnosis of exclusion, it is a bucket diagnosis based on symptoms, which can have many underlying causes...including Lyme disease and co-infections.
Perhaps seeing a MD who is literate in CFS treatments and Lyme would be the best of both worlds.
I hope it all works out!
Posted by windmillj (Member # 18530) on :
wow thanks for such quick replies!
We havent tested her again on western blot with igenex, just kineasology and other blood tests. i was curious about what those test results could have shown but gf trusts docs kineasology.
And in fairness, his kineasology has hit the nail on the head so far. I think i'll press the wester blot issue a bit further anyway - gently
blood tests revealed she did have some virus's, but these were apparently 'common' ones which almost everyone has. cant remember the names of them now. anyway, docs do not mention these as needing treating.
we have discussed looking for a cfs / llmd / gi / adrenal / thyroid specialist.
And if we do find a Superdoc who can do all those things i'll make sure he flies around to everyones house to make them better!!
thanks again for your replies, feel better for the support already.
Posted by Keebler (Member # 12673) on :
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I agree with JKMMC09: " . . .I would not rule out Lyme based on Kinestiology when there are symptoms. . . ." end quote.
Lyme might very well be a factor - it certainly can return and most LLMDs say there is no cure so it is important to consider retreatment of lyme - or other tick borne infections.
The absence of a herx does not always mean anything - or the stomach issues, alone, can be the herx. A herx can change forms along the way.
Can a new LLMD be consulted, getting fresh perspective and someone with a different level of expertise? Personally, I would not rely on kinesiology.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
please send me a PRIVATE MESSAGE, it's the 2 people standing together to right of MY name.
please give me the 1st and last name of her llmd and what city/state they are located. ***********************************
i have nationwide list, and could give you some more names if you will show other LARGE CITIES that are closest to you! Posted by luvs2ride (Member # 8090) on :
What about her diet?
Any chance she has celiac disease (intolerance to gluten?)
Could be other food sensitivities.
For me, if I ingest soy or dairy, I get a migraine and severe joint pain. It takes several days to clear.
I'm just wondering if something she eats could trigger her symptoms?
Posted by seekhelp (Member # 15067) on :
I would never use muscle testing as my sole method of determining a disease is there or gone. WAY WAY WAY too dangerous. I hope she gets some relief soon. Some good ideas were brought up so far. I'd go back to the drawing board using standard tests.
Yeast issues maybe?
Posted by billclo (Member # 12939) on :
I have to wonder if the original poster was treated adequately for cyst form? What are vit-D levels?
Posted by lymednva (Member # 9098) on :
Levaquin is not used to treat Babesia. It's for Bartonella. When on Mepron a patient also needs to be on a macrolide abx, such as zith or biaxin. That jumps out at me to begin with.
I agree with others that if she is still having symptoms she needs to be treated.
Posted by sutherngrl (Member # 16270) on :
Maybe the Lyme is gone, but Babesia isn't. Horrid crashing fatigue has been my worst symptom and only after treating Babesia has the fatigue improved. I lean toward the LLMDs thinking it is Babesia.
Posted by windmillj (Member # 18530) on :
quote:Originally posted by luvs2ride: What about her diet?
Any chance she has celiac disease (intolerance to gluten?)
Could be other food sensitivities.
For me, if I ingest soy or dairy, I get a migraine and severe joint pain. It takes several days to clear.
I'm just wondering if something she eats could trigger her symptoms?
She doesnt eat anything made from white flour, avoids sugar and red meat and obviously caffeine. She takes good quality probiotics and superfood/vitamin drinks.
She has to eat a lot of smallish meals through the day to take all her meds and supplements, if she doesnt she will get nasty acid reflux and stomach pain so bad she will throw up.
Today she is sitting up in bed all day, like usual, as lying down during the day causes the stomach problems.
This GI thing has been a problem for so many years now, and thats one reason she hasnt been able to give mepron, as well as some other oral abx along the way, a really sustained go.
[ 23. December 2008, 11:08 PM: Message edited by: windmillj ]
Posted by windmillj (Member # 18530) on :
quote:Originally posted by billclo: I have to wonder if the original poster was treated adequately for cyst form? What are vit-D levels?
Yes she was on IV rocephyn and a cyst buster (cant remember the name just now) for 2 years.
It really kicked her butt but eventually the herxing did ease off.
IV really improved her at the time.
Not sure of vit-d levels but have a feeling relatively recent blood tests should have covered that. Will double check this, thanks
[ 23. December 2008, 11:08 PM: Message edited by: windmillj ]
Posted by windmillj (Member # 18530) on :
quote:Originally posted by lymednva: Levaquin is not used to treat Babesia. It's for Bartonella. When on Mepron a patient also needs to be on a macrolide abx, such as zith or biaxin. That jumps out at me to begin with.
I agree with others that if she is still having symptoms she needs to be treated.
Hi, thanks for the reply.
llmd did suggest zithro and mepron for her but as she cannot tolerate zithro - due to practically guaranteed GI issues - we are trying with levaquin.
But due to the fact she has had no herx we are thinking of dropping levaquin and just trying to take the mepron to atleast try to keep that one going.
a lot of her symptoms could be from babesia or from bartonella, but neither one is the clear cut choice...
she is not showing a lot of the typical babs symptoms like headaches, chills or high fever
We thought it sounded more like barts with swollen, painful lymph nodes, anxiety, and trouble sleeping.
However there has been none of the other bart symptoms like muscle and/or joint pain, nausea, vomiting, chills or red rashes. more confusing still
Generally she hasnt been in bad lyme pain, just completely flattened and crashing daily. With the severity of the crashes getting worse this has caused pain all over her body.
She has hardly been able to speak to anyone as even that is too much excersion right now.
Even total rest has brought on another crash today. its very tough going to say the least.
We really appreciate everyones input, thankyou all!!
Posted by bejoy (Member # 11129) on :
Some suggestions:
Is she doing B12 injuections daily?
Is she taking some kind of green drink?
Is she taking any glutathione or MSM? (I like powdered bulk MSM.)
Has she tested for a variety of fungals using kinesiology? The Sanum products are very good for this.
Does she have dental infections that are straining her system?
Has she tested for Hashimoto's thyroid autimmune?
Has she tried homeopathics for lyme and coinfections? I like the series remedies from Deseret Biologicals, and a product they carry called LYM. LYM also helps with some of the viral coinfections that affect the CNS.
Is she taking Cortef for adrenals, or just supplements?
You might want to read up on some of the biophoton, lightworks, bionic posts, since you are interested in combination therapies. This is really helping some people.
I'm sorry she is struggling. Good luck to you both.
Posted by adamm (Member # 11910) on :
Hate to break it to you, but according to all the research, Lyme's like herpes: incurable. So if she's experiencing ill health, I'd try to convince her to restart treatment.
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welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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