posted
Hey, i have very cold hands most of the time. Sometimes it's too much. Is this a common symptom of lyme? I ask because i haven't had this in the first years where i was misdiagnosed.
I developed this after i went off the ABX (because the docs told me it's not lyme)
I'm also hypothyroid and i have low FT3, but i lose all my libidio and drive when i use synthetic T3. Armour didn't work for me in the past. I think either my adrenals are really bad or it's just another lyme symptom.
Hang on
Posts: 159 | From Germany | Registered: Nov 2010
| IP: Logged |
-------------------- J Posts: 91 | From Northwest Indiana | Registered: Dec 2004
| IP: Logged |
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I used to have cold hands/feet/nose...every day all day long.
I got rid of it with a round of chloroquine and primaquine. That combo helped many of my remaining symptoms but when I stopped, 7 weeks later many of them came back.
That particular symptom did not ever come back and i'm glad!!!! I feel that I had some form of malaria or another parasite that was completely erradicated with that combo.
You don't have to live with that symptom forever.
Posts: 1104 | From N.California | Registered: Jan 2008
| IP: Logged |
posted
Cold hands are signature for poor circulation. My twin sister, and my ma have this..along with poor veins to draw blood from. I have lyme n company, with POTS, and they do not.
I guess other than cold hands, i would wonder if you are experiencing other symptoms of low blood pressure or circulatory problems?
Cold hands...all my life. I run a 97 degree baseline temp. Others run at 99. it really depends on your basal (resting temp) to figure it all out.
posted
Most of my symptoms align with BABS and Vagus nerve dysfunction. Both with POTS? My therapist went through my history today--and we discovered that depression then insomnia, then head/back injury, then anxiety,then GI pain, then DOING PHYSICAL FITNESS I.E. DANCING GROUP for 1 year...immediately i was like POTS symptoms and some other weird stuff, including some IGM positive tests and Lyme antibodies.
This is the weirdest most undiagnosed thing we will probably experience in our lives.
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Taking Lugols iodine helped me with this.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
Yes, cold hands and feet here, for decades. Diagnosed Lyme 2 1/2 years ago, but misdiagnosed my whole life. Have had Raynaud's too.
At this moment, my hands are warm. Sometimes I'll have one warm one and one cold one. My Lyme doc thinks its a coinfection - babesia?
Two years ago I actually had a little frostbite on my toes. Skin turned black, and peeled off.
Currently on Samento and Banderol in addition to abx. I think it's doing something.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
chiquita incognita
Unregistered
posted
I would suggest you read Richard Shames, MD's book Thyroid Power www.thyroidpower.com
I don't know if (or if not!) the imbalance of *various* interacting thyroid hormones might cause your symptoms.
Perhaps after reading the book you can understand more. Then you can ask your doctor some better questions.
IP: Logged |
posted
I'm answerin in detail, it would be so cool if you could help me...
I'm already taking 150 T4. I experimented with a lot of thyroid medications in the past when i was misdiagnosed and i never got any better. I still had tons of problems but i thought it would disappear. It's the typical lyme story... I always had burning nerves, numb skin and nerve irritation the whole time, together with all the pain.
So i went to another doctor who gave me prednisolone for the supposed adrenal fatigue. Within one day, i couldn't sleep anymore and i wasn't able to function. My symptoms started 2004 with panic attacks, sweating, swollen lymph nodes, neck pain, extrene brain fog, depresion, from one day to antoher!!! Some symtpoms went away after a few years but i never ever knew why. When i got first sick i had to be at home for at least one year.
So an predni i had a burning in my chest ad i felt more and more bad. The docs didn't have an answer for that. I always got a high heart rate from it and i felt like crap the entire day. Than a lot of the old symptoms came back... This is where i got the idea of lyme. I thought it's impossible to get these symptoms with just steroids, there must be an infection. I surfed the web and found lyme. I did some tests for lyme in the past but they were negative. I did a newer test and was highly positive. Doctors told me that new test is crap, i repeated it and i was positive everytime. It's called LTT.
The sad part is, everyone tells me it's my thyroid, the doctors here simply ignore lyme, like everywhere...My CD57 is 30 !!!
According to the coinfections...
I have had really really horrible reactions to the following natural drugs: GSE and Artemisia.
I took GSE for about a month. The first week, i felt better. But i continued to feel more and more toxic on it. I don't know if it's because of my histamine problem with it... but...
In the third week on GSE, i had terrible neuralgies, panic attacks and is started to cry out of the blue. I was really thinking i'm going to die. I was constantly depressed and in a state of panic. I've read in this forum for a while and to me it sounds like some kind of herx?!
Artemsisa makes me feel mad too. I get gut pain from it (it contains histidine and i have problems with histamine...) but i just feel awful from it.
So maybe i'm dealing with babesia? I really don't think it's just lyme in my case. I'm still traumatized with this whole "it's just your thyroid" thing.
I was on ABX for 6 month and after i went of the ABX, because i was losing so much weight and muscles. I was on mono doxy 4 weeks, after that rocephin IV for two months and after that biaxan and artemisia for two months.
I was afraid of the ABX because i thought it could cause even more weight loss and i went for the herbal routes. The herbals only made everything more tolerable but i still feel like crap most of the time. The brainfog is a bit better.
I did some short term experiments, i took biaxam and i instantly got a herx the next day. Same thing with metronidazole...
The only thing that could be the other option to all the reactions would be some kind of prophyria?!
Posts: 159 | From Germany | Registered: Nov 2010
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Energyman I am not qualified to answer any diagnostic questions, neither could I do so from afar even if I was qualified. I am so sorry to turn you down after all the time and trouble you took to write that. And I also am sorry for the deep distress you are having. I can fully understand!
What I will offer *as possibility only!* (not a diagnosis) is this:
According to Traditional Chinese Medicine, if the liver is toxic then emotions, particularly anger and depression, will flare.
As herbalist I will say that GSE and artemesinin both will stimulate bile flow from the liver and help to detoxify it in so doing. However it could be that die-off from both herbs also overwhelmed your liver and that it may need some support.
I would suggest doing milk thistle ongoing and to step up your detox protocol during die-off with things that your LLMD recommends. Charcoal? Chlorella? Vitamin C powder? Whatever your doc says.
I also suggest you could check into leaky gut syndrome. If determined to be present by an alternative physician (this requires alternative medical testing and no such test is available in a standard medical lab) then it could explain some of the pronounced emotional and other symptoms. Leaky gut, *if* present, would lie at the heart of auto-immune-type reactions, hyper-response to foods and supplements and medications, elevated emotional states, and more.
It also could be interactive with the lyme die-off and make the hyper-response worse. YOur body is much, much, much more prone to toxicity with leaky gut than when the gut lining is in really good shape.
Again I don't know if you have leaky gut going on, but if yes then to address it would be key.
What I also am suggesting is that to build your body up so as to better tolerate die-off/herx reactions then you may have a bit of an easier time during herx's.
I think part of the key too, and a discussion we all should have ongoing on this forum, is how to build immunity and balance it. If the body's own immunity is strong and intact, and not over-active, then we have a much better chance of getting well. So it would seem to me, at least.
I would suggest you read up about leaky gut and see if you think it applies to you, or not. Then check into it with an ND if you think "yes". Elizabeth Lipski, CCN Ms's booklet titled LEaky Gut Syndrome is really excellent, short but in-depth. YOu will understand a lot about physiology in ways that will enable you to better take charge of your health and ask more informed questions of your doctor, after reading it. Again it's short but in-depth and a very lay-friendly read.
FYI Dr Andrew Weil cautions against over-diagnosis of the disorder too. He writes that if you don't have bowel or digestive issues or celiac disease, no asthma or neurologic-type symptoms, then probably not to suspect it. (I am quoting from memory and could miss a few details. You could google Leaky Gut Syndrome and Andrew Weil to read his article about it). Conversely, Dr Mark Hyman also says that it is wildly under-diagnosed, in fact only 1% of the time.
I hope this helps you.
If you are interested to pursue this further, you could find a naturopathic doc here who can test you for it: www.naturopathic.org
Please know that we will be thinking of you. And, we shall overcome.
PS I am naming the above doctors/clinical nutritionist because they are not writing about lyme in this context.
The information above has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. Drugs and herbs may interact, talk with your doctor.
IP: Logged |
posted
thank you, i think you could be right! i had a lot of problem with my gut after the abx.
i think zeolite helps me. chlorella is not so good, vitamin c is fine.
i'm currently on cowden and i have NO PROBLEM with it, with the added pinella and burbur. without burbur and pinella i feel horrible on it.
i think you hit the nail with the liver i did not detox at that point. with GSE i always get insane reactions. but this was not just depression and anger. it was insane... it also lasted for about 3 month!!! holy cow...
i'm from germany. do you know someone here in germany baden w�rttemberg who is good with that stuff?
do many people with lyme have a leaky gut?
Posts: 159 | From Germany | Registered: Nov 2010
| IP: Logged |
posted
If you susspect babesia you have to treat full dose 500mg a day Azithro and meprone or malarone for at least 4 months to see results.But mepron can couse depresion to some people.
Posts: 482 | From Nebraska | Registered: Feb 2010
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Both GSE & artemesia are very potent. You really need to read up on what artemesia is about if you take it. I posted a long thread about it here. If you are interested - I will search it.
Artemesia interacts with iron. You body also builds up a resistance to it so you have to stop taking it for a bit. Some people also take it with grapefruit juice. There are many forms of artemesia. Were you taking the whole herb or something else?
GSE is very strong stuff. I would also think that this is not good to take on a continual basis. If you do have a strong reaction - maybe you could pulse it - take it on & off.
You may need to take something to mop up the toxins in between? Also, take something to improve liver function as chiquita suggests.
Sometimes, these things can be helpful - but you may not need to take them every day. GSE does also hit yeast. You may be having a yeast die-off.
How's you diet? There are tests here for leaky gut. I think I did one along time ago. You may want to inquire if you have something like that available in you location.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Cold hands and feet here too; sometimes just one hand, sometimes both. Also get Raynaud's which I had never had before until my early 40's when I got sick with neuro Lyme. I am hypo-thyroid too, also Lyme induced for me, IMO (for me).
I read that people with Raynaud's usually get it by their early 20's, if this is the case the cause is unknown and auto-immunity is suspected. If it's developed later on it is considered secondary Raynaud's and is believed there is another underlying issue that is causing it. I think it's not uncommon with LD. Good Luck. TS
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I had the cold hands and feet from Lyme induced hypothyroid and after I got on Synthroid they got better.
Posts: 319 | From Mass | Registered: Feb 2010
| IP: Logged |
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Grapefruit seed extract.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
chiquita incognita
Unregistered
posted
Energyman, here is something I can only pose as a question.
A) About GSE and artemesinin:
I am not an expert on pharmacology and do have books by *top!!* herbalists (with whom I also have been lucky enough to study, fyi) who really know that stuff in and out.
AND HOW!!! These people will jot molecular chains on a board the second you mention an herb from any part of the world, tell you about pharmacology and body chemistry, double blind studies down to such details as which participating patient had which medical vulnerability prior to participating etc....you can' t believe their knowledge, topped by decades of practicing experience to boot!
I would be very interested to know what they might say about the strong Artemisia/GSE reactions. I want to know more about which enzymes are being elevated or inhibited and if a person's liver could become, possibly, unbalanced by those herbs. (FYI I sort of doubt this because *one!* woman---that's only one, to stress----told me of her successful *reduction* of liver enzyme lab numbers by taking GSE for hepatitis, when I was working in a healthfood store. Flavonoids have anti-viral and anti-bacterial properties, and this anti-viral action could account for her reduced lab numbers. Note that she did not claim any cure, she only claimed good improvement. Flavonoids tend to be soothing to membranes while strengthening capillaries, tissue et al. That said, too much of a good thing can also be not a good thing, and these herbs, artemesinin and GSE, are strong).
Or perhaps that is not the case at all, the liver is not being imbalanced and it truly is attributable to a herx/die-off reaction. Only a good sign. Those herbs being as bitter and loaded with flavonoids (in the case of GSE) as they are, I really do *suspect* (Can't diagnose for sure, not qualified or allowed) it's more *likely* that they are causing rapid die-off and this *could possibly* be the source of the reaction.
I am posing these as questions to ask a naturopathic doctor, not making any assessments, for you or anybody else. Please run these by a physician as questions, one whom you know and trust, to determine if your strong reaction is a good sign or a bad sign.
B) DOSAGE of GSE or artemesinin:
Regardless, I would suggest that any time there is such a strong reaction as you describe, SLOW DOWN!!
Cut down the dose.
Or stop altogether just for a while, to take a break.
***(Don't ever stop or cut dosages on any medications without a doctor's advice, please. I am talking about the herbs, not medications. Just wanted to be sure that was and is abundantly clear!!).***
If you have strong or adverse reactions, stop and consult your physician. That's my advice.
My own LLMD said to me that the thing to do with a sensitive body, is to start at sub-therapeutic doses just to acclimate the body. Not even for therapeutic effect, at least initially.
YOu'd have to do this under a doctor's guidance, but in essence what he suggested was a plan looking something like this:
Take (for example) one drop of GSE in a tall glass of water. Sip only 1/4 of the cup, at intervals, gradually and not in one chunk.
Increase very, very gradually over a period of several weeks, just to acclimate the body. It all depends on individual responses and I am not qualified or allowed to give instructions. The point is, he was instructing *me* to go very, very slowly and listen to my body for responses. He had me increasing something like 1/4 cup of sips to 1/2 cup of the same after one week. Then gradually increase to a full cup, finally add a second drop of GSE, etc.
That was how my LLMD would "Sneak it up" on me with my very hyper-reactive system.
Again this has to be done under professional guidance and I am only sharing what he told me, but cannot offer it as personal instruction. Talk to your doctor and ask this as a question, to be sure that the GSE is the right herb for you (or the artemesinin, etc).
NOTE: Both herbs are extremely bitter. You will get the most therapeutic effect if you can stand the bitter taste, but if you can't then by all means add the drops to juice with some kind of sweetener like honey, to make it palatable.
C) *IF* there is leaky gut going on, that would cause wildly exacerbated symptoms and hyper-responses to almost everything under the sun. I would strongly suggest you check into that, with a naturopathic physician.
Dr Leo Galland (if I am remembering correctly which doc it was) in an article he wrote on the healthy.net site, attributes one part of the leaky gut causes to histamine reactions. Chicken and egg relationship with leaky gut. According to him it can cause it, and on the other hand the allergic hyper-responses caused by leaky gut would themselves also cause histamine reactions, according to almost all sources I have read (I have read lots of them). A cycle.
Quercitin (a bioflavonoid) with nettles combined together, have been very helpful and supportive in histamine reactions, I have seen that working with the public.
D) As for locating a doc in your area who is LLMD or LLND, I would suggest contacting Dr K's office to ask. Perhaps they could refer you. Surely he being from Germany would know.
You couldn't possibly be German yourself?? Your English is way too good and you "Sound" so American in your manner! Gotta be a transplant out there? How do you like that beautiful country? It's gorgeous eh???
Sending best wishes, CI
ps here is an article about leaky gut linking several docs articles for further info. I quoted some of the content from this article and may remember a few things wrong: www.americanchronicle.com/articles/view/154338
I still think Elizabeth Lipski's book would be the best reading source of all fyi.
Leaky gut will also exacerbate liver toxicity, hugely.
Take care of it, it's important (if you have it).
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. Drugs and herbs may interact, talk with your doctor. This does not substitute for medical advice, talk to your doctor. THis information is for your educational purposes, with the intent that you ask your doctor questions about it. Never self-treat and never follow up on any health advice from anyone except your physician. Make sure your physician approves this information before you implement any of it. Your health is your responsibility, and nobody else's under the sun. The author is not responsible for any results of this information, and offers it strictly in the spirit of questions to be asked of your doctor, not for self-treatment. Any use of this information in any other context, is violating the purposes and intent of the information, and of the author.
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Contact INK Institut fuer Neurobiologie nach Klinghardt in Freiburg, formerly in Stuttgart. I have been treated by some of the best Klinghardt therapist in Stuttgart and Dr.K. himself. They understand Lyme and underlying problems; all trained and certified by the Institut. Read/google: Lyme Disease: A Look Beyond Antibiotics, as practiced, taught and written by Dr. K. You can find it in German and English on the internet.
If you have questions, please let me know.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
chiquita incognita
Unregistered
posted
Hello Energyman et al
Something occurred to me.
About the GSE and strong reactions et al:
When I worked in the public setting (more than in just healthfood stores fyi although I did that too), I only saw one person with an adverse reaction to GSE, in about 7 years of work. That one person also told me she was sensitive to everything under the sun.
Yet I keep reading about it here on the board somewhat frequently.
This really does make me wonder if it could be herx reactions.
I am careful not to attribute everything to herx and to be thinking of other things that could possibly play in.
However given this pattern I have to wonder about it. I am not a doctor and am not stating any facts, only asking this as an open question.
The reason why that one other woman had *reduced* enzymes in her liver with GSE was because she was virally infected and the GSE was probably helping to kill off the bugs. It was taking time fyi and she improved, did not claim cure as said (I am required to throw that in, and also want to represent honestly anyway).
But I doubt that it would inhibit enzymes to the point of imbalancing liver function, even if it may inhibit or stimulate some enzymes to some extent.
That extent to which it inhibits/stimulates could set off an already imbalanced liver? That is still a question to be asked of a doctor.
It *is* strong however and I would suggest diluting it and seeing how you do with it.
If you develop strong adverse reactions, STOP!
The same holds true for artemesinin. Very strong. Maybe try a low dose, and I wouldn't do it with GSE together, that's too much.
And do check in with a naturopathic doc if there is even any room for any doubt. It's your health, after all, and not what's on paper or in the head that counts. And after all, I am not a doctor.
Take care and be well. Let us know how it goes. I will be interested to hear back about this, bad and good results alike.
Best wishes, CI
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. This does not substitute for medical advice, talk to your doctor.
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