Hi everyone, I'm not feeling great, and haven't felt like this yet.Started Antibiotic treatment 1 month ago and also on my own I started taking Cat's Claw, Smilax, and Resveratrol per a book called Healing Lyme, which said it was OK to use with Antibiotics.
I started those immune boosting herbals about 5 days ago. I have never felt quite this before. I feel floaty, and puffy, and my legs feel heavy and just strange. Almost like I have a fever.
Not sure, if this is herx reaction now, because when I first started taking antibiotics I had some symptoms become 200%, and I did wake up sweating which is rare these days. Then I got new symptoms like my right hip joint got kinda sore. My left leg had been the problem for months, and now it seems like they switched.
I did drink some real cranberry juice, not the sugary stuff. Could that be causing this reaction as it helps clean the blood, or could it be the herbals started to kick butt? I know one raises white blood counts and Natural Killer cells.
Get this, my Western Blot test is in but I'm waiting for the doctor to get back from vaction. The reason I'm freaking is because in December the regular doctors said they thought I had ALS. But I never believed them because I had a rash/bruise on my wrist with a puffy center. Weeks later my muscles started twitching. That was August 2007, by October everything went bonkers.
Sound familiar? Good times!
cheers, Will Seattle, WA
[ 28. February 2008, 04:35 PM: Message edited by: mookiewill ]
Posted by bettyg (Member # 6147) on :
welcome will; you are in good company!
many on here dx w/als too; so to get INPUT from those dx with ALS/LYME, i'd suggest the following ok!
edit subject title; click on PAPER/PENCIL icon to right of your name. that opens up subject line AND BODY TEXT.
change to: newbie, dx ALS/LYME?, am I herxing?
now we know what this all about! ALS folks will note that and click on this to help you along too.
sounds like herxing to me!
start a LYME JOURNAL OF ALL SYMPTOMS, keep track of date they started; stopped, ***********************************
take it to your llmd meetings too; helps you remember things.
write down questions as they come up since we can't remember worth 2 cents!
you should have gotten my newbie package; after long list of symptoms before the SSDI, ss disability insurance info starts, are 1-2 lyme symptoms charts; never have used them myself! Posted by mookiewill (Member # 14743) on :
FYI: A week after he ALS diagnosis, I got a clinical diagnosis of Lyme from a experienced Naturopathic doctor who had Lyme Disease years ago. My symptoms fit more with Lyme. I have had very clear fractional sleep disturbances since October. Ramdom zaps and zings, muscle cramps, brain fog, balance problems, confusion. The basic I feel better on week, to I feel bad again. My walking started to get bad in November and is bad now, but I expect in a few weeks I will have another week where I think, Oh I doing better at walking. This nuts!
Thanks everyone! Will
Posted by Geneal (Member # 10375) on :
Welcome to the board.
Normally when you take antibiotics....you start to feel better, not worse.
Generally this isn't the case with Lyme.
It is a bumpy road filled with pot holes, detours and "road closed" signs.
Unfortunately, the only way to get to the end of the road, you
Must stay on it and persevere.
Keep us posted on your Western Blot results.
Was it done via Igenex, Ca.?
Remember though. Lyme is a clinical diagnosis.
Blood work helps to support a diagnosis and helps with some insurance
Companies in regard to treatment.
Hugs,
Geneal
Posted by dontlikeliver (Member # 4749) on :
Hi,
I'm sorry to hear of your ALS diagnosis, but hopefully this is a MIS-diagnosis and, like you say, instead Lyme disease presenting as such instead.
Are you still seeing a Naturopath?
I would really recommend you find an experienced tickborne disease doctor who's a member of ILADS (www.ilads.org). That doesn't mean to say that you should not see a Naturopath as well, but I think in your situation, you need probably some heavy-duty antibiotic treatment.
Keep us updated how it goes.
DLL
Posted by mookiewill (Member # 14743) on :
The Naturopathic I'm seeing is experienced with Lyme and they did show me the www.ilads.org website and told me they followed that.
I'm on Doxycycline 400MG a day. Also Phytostan for the Cyst form of Lyme. Glutathione Precursors, Metabolic Complex with tissue support, Magnesium Citrate with Malic Acid, and ProBiotics.
Once I was 2-3 days into the Antiobiotics I changed. I wanted to sleep more, and I didn't want to do much. Is this normal?
I'm the type of person that needs to know they are on the right path and that this is the path many others have walked. Posted by mookiewill (Member # 14743) on :
Yes, the Western Blot test was via IGenex, and they tested for CD57 and other co-infections.
The ALS diagnosis was based on having muscle weakness mainly in 1 leg. They said it didn't meet the full criteria. But they wanted me to join the MDA that day. Set me up for therapy. When I told the doctor that I was instead going to see a Lyme Disease specialist he about jumped of his chair. Offered a referal to his ALS friends practice. Told me you don't have Lyme Disase because you tested neg. on the ELISA. By then, I knew that wasn't the way to diagnosis Lyme anyway. When I asked him about my list of other symptoms not related to ALS, he simply said "you have anixiety and depression too"
Yeah now I do! Posted by dontlikeliver (Member # 4749) on :
What other tickborne co-infections have the Naturopaths tested you for (and are they conventional tests or some kind of 'energetic' testing?)?
Doxy at that dose would be on the 'ILADS protocol', but on it's own, I don't know. Most of us are on combinations of antibiotics, and sometimes also antimalarials.
Yes, it's normal to feel tired the first few days on a new meds regime.
Posted by mookiewill (Member # 14743) on :
I see the doctor on the 28th, so maybe she will adjust the attack once the test results are known. Not sure what co-infections where tested, and not sure how they where tested. She had Lyme Disease so she does seem like a good fit for me so far. Considering that I didn't get diagnosed for anything for 6+ months by the regular ducks.
I also take Biltricide 600MG for 3 days every 21 days. Must be for worms. Rx for 9 refills. Anyone know if this is linked to Lyme?
Posted by christineutopia (Member # 14614) on :
did anyone hear of Minocycline? it is a blood
brain crosser it is suppose to be good if your
MRI had spots on it? Posted by mookiewill (Member # 14743) on :
I had a brain MRI in October and it didn't show anything. The ducks where being polite about Lyme at first, but they where looking for the "Big Boys" like MS and ALS. Once I got sent to the big headed neuro guys, I was on the ALS railroad.
Do Chronic Lyme leave spots on the brain? Posted by mookiewill (Member # 14743) on :
Well I just got back from the ND.
My Western Blot tests where negative, but I was positive for Babesiosis. The doctor views the Western Blot as a "false" negative".
She had me stop the Doxy, and I will start now with rx's Mepron and Zithromax, as well as an herbal, Artemisinin with grapefruit drink, For 3 months. She might start me on Doxy again later. She wants to deal with Babesiosis first.
Any thoughts? Posted by just don (Member # 1129) on :
Yeah,I have a thought
I THINK your with a good doc,,,oops GREAT doc,,,stick it out with them,,they will get you there eventually.
takes a LONG time to clear all sx,,so keep at it!!says--just don--
Posted by Wisconsin (Member # 14522) on :
In terms of the herbs you're on, my son has been on those for a month. He also felt terrible at first.
I'd have to say we see him getting progressively better on these herbs now. Not perfect, but much better.
Just wanted to give you feedback there.
Posted by bettyg (Member # 6147) on :
will, from everything i've read on here from the beginning, YOU MUST TREAT CO-INFECTIONS FIRST.
so you have; then later you tackle the lyme...good luck! Posted by mookiewill (Member # 14743) on :
Well I had a sh#t fit this evening. Is this Lyme Rage? Or is it related to Mepron or Zithromax?
Normally I wouldn't have gone bonkers and thrown things. Nobody was here, so thats kinda the good news.
Posted by Geneal (Member # 10375) on :
Oh....sounds like Lyme rage.
Of course everybody has a different reaction to meds.
I used to have these horriffic rage episodes... still get them occasionally,
Except now I can recognize it and walk away before I lose it.
I have two small children and it devestates me and them to see me like that.
I don't suppose you had a Western Blot from Igenex?
Did you get a copy of your Western Blot?
Hugs,
Geneal
Posted by bettyg (Member # 6147) on :
hi, check out the link lymetoo posted above about ALS/LYME ... looked interesting and bookmark it for future use! good luck.
sounds like lyme rage and a herx combiend!
Posted by Lymetoo (Member # 743) on :
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