I have been sick for several months and have been tested, poked, prodded... had mri's, x-rays and any number of other things a cadre of doctors could come up with. Have seen the rheumatologist, cardiologist, neurologist, pulmonologist, been to the ER and admitted to the hospital for tachycardia and extreme pain, (for which I was put morphine based pain medication) None of these doctors have a clue what is wrong with me. I am on a dozen different medications for pain and muscle spasms. I have been basically bed-ridden... when I actually leave the house it is with the assistance of a wheelchair.
Before getting ill I was a vibrant, outgoing person with many activites, interests and friends, but now I spend hours, days, weeks, months on my own with my husband and daughter. It's not that friends don't want to visit... it's that I have no energy and feel to horrible to have anyone visit or go anywhere.
My husband suspects lyme disease... we are at a loss for finding an llmd in our area.... arizona.... the four we have found are not taking new patients or don't accept my insurance. Fortunately my family physician is laid back and listens to what I have to say and has started me on antibiotics without verification from tests.... but in reading this board that doesn't seem like it will be enough.
My family doctor is very kind and accomodating so I simply have to find resources and valid research to get the treatments I am looking for but I am not sure of what I need to do, or where to go. Your help is sooooo appreciated and I am very glad to have found this board. Thank you.
welcome to this board duchess!! sorry to hear your health is noo good... we all understand you because we all have a cvery similar story as yours...the best lab is igenex, in california, before you star any abx, you should tell your family doctor to senf your blood sample over there, thay have a website, i am not allowed to give you information here, but if you google it, will be very easy to find it... you can mail it,thay have a whole menu of lyme test and is the most reputable lab in the world...have you done any other infecctions diseases tests? or inmune diseases??? take care and you can ask anything here, everybody will be happy to meet you and help you
I am sorry you have been so sick. When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
It is important that you get proper treatment. I do not know of any Lyme doctors in AZ, but there are a few in CA who come highly recommended. Would you like their names? Perhaps your doctor could consult with one?
What antibiotic and dose are you taking? Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks. It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.
Sorry you're but glad you found this board. The folks here are great. Feel free to ask any question or just complain. We're great listeners.
Lyme affects us differently in physical ways, but we all experience the isolation, the depression, the cost, the fatigue, the feeling that we're not part of society anymore.
I got sick about 2 years ago.
I had an itchy, oval shaped rash on my right shin; none on my left. I thought it might be dry skin and I ignored it. Then my knees started to hurt and I thought, oh well, I must be getting olde and I ignored that too.
But then I lost my sense of balance, my face started to get numb, my vision got messed up and all sorts of other weird things.
I went to so many doctors and I too was scanned and probed and prodded. One doctor I saw me that I had dementia!
I was lucky enough to have a great LLMD not too far from me. I have been on treatment for 17 months and I just started feeling better.
The past year of doing nothing but sitting on my couch was horrid. I suffered every day. I look fine on the outside though, so its nearly impossible to get sympathy from family and friends.
My family avoids me now and most of my friends have disappeared.
On this board I have found new friends. The folks here understand exactly how I feel. They don't pass judgement on my messy house or if I don't shower every day.
Hang in there. I think its great that you have a doctor that is open minded. I hope you do use Igenex to test your blood for Lyme. You may also want to test for co-infections.
Thank you for the information, caring and understanding. As for what I have been tested for..... sad to say.... I have no clue!!! There have been so many docs and different tests that I have no idea who has done what. I am in the process of retrieving all my records... it will probably take a degree to understand what it all says but I am hoping to get a better handle on it. For antibiotics I am currently on doxycyclene. The info on another thread about burning was very helpful... I am very light light skinned and burned easily before any of this... on all the meds I was nervous about sun being that I live in the desert.... not that I go out much.
6blues... so unfair to be treated like a leper... as if any of us asked for this misery!!! If they only understood the months of pain and tears and feeling so sick... I have lost a considerable amount of weight while being sick..(who wants to eat when they feel so crummy... right!) so those I do have contact with say Oh! you look great... to which I respond.... better living thru makeup and pharmacuticals... they laugh and when 30 -45 minutes of sitting up later I have to lie down they seem to understand more.
ticker... I had never heard of herx before.... I cannot imagine in my worst nightmares of feeling worse than I do now!!!... I have been writing this reply since last night... a little bit at a time... There is so much information out there I am not sure who to listen to???? Which one will help and which one will just take my money??? There seems to be a lot of snake oil salesmen out there with "cures" for lyme... it makes me mad that fellow human beings would take advantage of people so desperate for anything to help us feel better!!!!
Brid.... Thank you for the welcome.... I joined this board because of the warmth and caring that was so prevalent in each of the threads... each of you have empathy, understanding and caring for others who you may have never met in person and new people like myself are welcomed in with open arms... it makes me cry with happiness... relief... and hope... thank you
Hi Duchess. Yes there is a lot of information, but it is important to learn as much as you can. A good book is "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.
What dose of Doxycycline are you taking? Yes you definitely need to avoid sun exposure when on it. You can get a severe burn in minutes even if you are wearing sunscreen. Some people have even had their knuckles get burned from the sun coming into the car when they are driving.
Other things about Doxy in case you didn't know: Do not have any diary, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. If it makes you nauseous, eat something substantial and non-dairy before taking it. Drink a full glass of water when you take it. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful! Whenever you take any antibiotics, make sure you take high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth. The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.
The herx reaction can be scary, but it is a sign the meds are working.
I agree with the others about getting proper testing. It definitely helped my state of mind to know exactly what I was dealing with. As someone else mentioned, perhaps your doc could work in conjunction with an LLMD, especially since you say he is accomodating.
I am reading a book now that someone here recommended called:
Healing Lyme by Stephen Buhner.
He also discusses co-infections and treatments. I very much like the clarity of the writing and the layout makes it easy to use as a reference. If you think you may have Lyme you may want to purchase a book or do some cyber research so that you can discuss it with your doc.
Welcome to the wonderful site! So sorry you are going through all these problems, you are not alone in this and I'm happy you found us.
As Ticker said, please get your blood tested by IgeneX Labs so perhaps you will have an idea what you are dealing with. Lyme is in every state not to mention every country. It is the 2nd fastest growing infectious disease in the U.S. after the AIDS Virus (I believe it's now #1).
I also lost the use of my legs for over a year though I used crutches when I needed to get out. I can't tell you the number of times I fell down, on cement, down the stairs laying in my basement on the cold cement for hours, hung onto walls, etc. It's a terrible feeling and I can relate to everything you said.
I don't even remember being bit by a tick, but I knew something was wrong when I got this itchy rash on my ankle (less than 50% of people even get any type of rash) and I started to feel flu-like symptoms and extremely fatigued.
I went from doctor to doctor for 5 years and they all denied I had Lyme Disease so it was really rough. I lost my job, my marriage broke up, yet I am on the road to recovery after choosing my own personal protocol.
Please don't worry about herxes, everyone is different and reacts differently to medication. When I was on Doxy and had my first herx, I broke out into a sweat, then chills, and I was actually happy because I knew my body was responding to the Doxy. Sadly, the Doxy didn't cure me so I went on to a different treatment regimen.
I now detox alot (detox baths) to help release toxins in my body, take lots of supplements to keep building up my immune system, I changed my diet, no sugars, no carbs, no soda, only filtered water. Not only do I have the use of my legs back, I am also able to exercise and do things that I couldn't do before.
Lyme is curable! I hope you get to see a LLMD. I did find one in Phoenix, AZ but I don't know anyone who has seen this doctor, but you may want to give him a try as his experience looks really good.
His name is: Dr. Warren M. Levin and he is a member of ***** and attends Lyme Conferences.
Most members have to travel long distances to see their doctor so I hope this doctor is close enough to you. If the office says they are not taking new patients, ask to be put on the waiting list as there are always cancellations.
Hope you feel better and let us know what you decide to do, okay?
I also want to welcome you. I ditto the Igenex. Mine was indeterminate but I showed Babesia, Mycoplasma, & Bartonella. Was told the indeterminate was just showing my immune system had stopped fighting.
Sad thing is I knew I had lyme, was diagnosed 19 yrs ago and treated 10 days. That wasn't long enough. That test was positive. Then came the years of being sent from Dr to Dr. I understand, the poked and prodded. We all do.
We are all here to help you any way we can. Just ask.
I just wrote to you in another post and now know a little of your story. There are a few of us on here with the mobility problem. At first I was skeptical of lyme because it didn't really list it as a major problem or I should say a widespread problem. The more I investigated though it did talk about paralysis.
I only had minor left sided problems until being doused with 1,000 mg of steroids for 4 days because my neuro claimed I had MS. Since then my right side is far worse than the left because the steroids depleted my immune system and that's a nono for lyme. Unfortunately lyme was never thought of here in Dallas. I feel I was bitten 2 months before symptoms while hiking in Maine but never saw a tick or had a rash. When I look back I was pretty functional until the steroids and now have to use a walker and when our first grandchild was born had to use a wheelchair to maneuver the hospital.
I travel 8 hours one way to see Dr. Charles Crist in Springfield, Missouri. A few people come to see him from as far away as Wisconsin. I know this would be a struggle for you with your limited mobility so California may be a better choice. Most reputable LLMDs will work with your regular doctor and you only have to see them every 4-6 months or do phone consults after the initial visit. I hope this info helps.
Thank you for the overwhelming welcome to the group. Earlier I was asked how much doxy I was taking... 100mg 2xday, I didn't know about the sun, dairy or sitting up, thank you again!!! I have been a vegetarian for 16 years and used to as part of my reasoning for the lifestyle say... sure I may not live longer for being a vegetarian but a healthy lifestyle will mean that I won't spend my senior years running to doc appts and planning meals around pills..... The universe got me back for that one.... didn't have to wait for my senior years!!!!
Before this board I had no idea about coinfections!!! I feel so ignorant!!! Kind of lost in a new maze of illness. How do you detox? What do you detoxing for? How effective has this been for you? Does it relieve pain? overall crummy feeling? boost energy? I feel like the little kid asking why?
So far I haven't taken any nutritional supplements and am wondering what other have had success with... there are so many different vitamin supplier and I have no idea which ones are better for lyme? Do any of the books have recommended healing diets?
Thank you for the leads on docs and books... I will definitely look them up and will have my blood work sent to the lab you all recommend. Sorry for asking 101 questions.
You are so very welcome! I am sure you are going to hear this alot, but 200 mg of Doxy per day is not enough. Most people take between 300 to 600 mg of Doxy per day.
Yes, the sun is very dangerous when taking Doxy, I know people who even wore the highest sunscreen and still got burnt! It makes the skin very sensitive to the sun, so please be careful.
Most people who have lyme also have at least one of it's coinfections, on the top of this board is a "sticky" thread that lists all the lyme symptoms.
Personally, I take detox baths which consist of mixing 4 cups of Epsom Salts, 32 ounces of Hydrogen Peroxide and baking soda into warm (not hot) water. I sit in that bath for about 30 minutes or more, 20 minutes should be the minimum.
The purpose of a detox bath is that it draws out toxins from your body, very important as not only are there toxins from lyme bacterias, toxins are in the air, everywhere!
Then there are detox foot baths that consists of many different "recipes", I add cayenne pepper and dry mustard to those foot baths, also helps draw out toxins.
In my case, it does relieve pain and makes me feel better in every which way. I don't usually have pain except when I exercise which is all the time. I do aerobic walking with weights which makes my legs and arms a bit sore. Many people swear about the results of these detox baths.
Then I take a product called Aloe Master to remove toxins that stick to the intestinal walls (I kind of look at it like putting oil in a car, the aloe helps move things along so they get out of my body).
I avoid all vitamins and supplents in a tablet form because the digestive system only absorbs a small part of a tablet.
Liquids and powders are much better. I take a liquid Vitamin Complex B Total, Oleda Vegi-Greens Plus Powder mixed with filtered water, Dr. Jernigan's Neuro-Antitox Formula II CNS/PNS to remove ammonia from my body.
I do recommend Dr. Jernigan's book called "Beating Lyme Disease Using Alternative Medicine" even if one is taking "conventional" antibiotics as he goes into detail about detoxing and diet, plus more. He explains how lyme bacteria's work inside the body as well as toxins and how to rid the body of that.
Well, this has gotten too long so if you have any questions, please ask!
Ooooooh! Bath! Yummy! Baths are always medicinal... can you mix in lavender and other bath herbs and still get the detox benefit?
Several people have recommended the book. It is on my list of must haves.
The whole vitaman thing is really overwhelming. I start looking on the web and soon have a dozen different sites claiming all kinds of different concoctions will make me feel better and boost my immune system, so thank you for the suggestions... its great to have a place to go and ask from those who understand.
I have been having alot of difficulty with large intestine function due to all the pain meds... the doc put me on a glycol product that sounds like it does some of the same thing the aloe product does... have you experienced an interaction between them?
It is a confusing maze out there. Hard to know what to do, even on this board so many people are trying different things. We all have to find what works for us and what we believe in.
I, like Denise, went the Dr. Jernigan way. I spent many weeks in Kansas fighting not only to get my life back, but fighting for my very life. He himself had Lyme so he understands the battle. Used many different supplements to begin with, now, a year later, am down to just using a few.
Infrared saunas are great to detox in. Sweating out all the gunk! There is lots of info on sauna's on different threads.
Glad you are here - lots of people with lots of knowledge.
Though I would pop in late on this thread and welcome you to the lyme boards. I am sorry you are not feeling well, and hope that you get your answers and get on the road to better health. You have already gotten tons of great advice so I won't add anything except to echo that this board is so wonderful, filled with kind, caring, knowledgeable people who are always there to help...
PS- There is a lyme literate Dr. in Santa Fe, NM named Shirley Scott, I believe she does phone consults. I hope this helps, let us know.
Oh wow....I hurt for you Duchess. Talk about sounding familiar. I can't even begin to tell you how much so. I went from having more energy and being so active...working 12-16 hrs/day plus exercising afterwards plus everything else and it was GREAT. Then it hit. WHAM! The pain, muscle twitches, heart skipping beats, brain swollen.....you name it. I too was sleeping 20 hrs or so a day. Went through some periods of insomnia but for the most part just slept.
It does sound as if you've at least got a doc who wants to help and will listen as well. Since you can't get in w/ a doc there I would recommend finding a LLMD(Lyme Literate MD) that's highly reputable(check around on this site) and have him work with your local doc. Most if not all have no problem with that.
Just know there is hope. It has definitely taken awhile but after living (errrr...sleeping was living) that way for so long I have some lingering things that hopefully will one day go away but even if not they're treatable and allow me to live...make that LIVE!!! Yesterday I played 2 matches(won both....YEAH!) with team tennis and am starting back to work next week! Starting out slowly as I've made the mistake before of diving in and not being able to do it. Live and learn though right? If anyone had told me/my family/friends/docs/etc I'd be where I am just a few years ago they'd have died laughing......after they picked themselves up from a dead out faint.
Good luck...take care of yourself! Know everyone here will always be supportive and very helpful!!!
so glad you feel comfortable here.. aeverybody is very nice and helpfull, we are in the same boat!! some feeling feel better, some of them not, but i have actually notice that lately everybody have improve! in a different levels... of course we all have our bad days...also i have notice that we tend to write mostly on our bad days... so dont get discourage when you see many posting of us not feeling good......i am also taking 200 mg doxy a day, i was taking 300 but i had lots of nausea so both doctors, the llmd i saw and my general infecctions disease doctor in peru told me to go to 200 and i have notice some of my symtoms have gotten better...it just takes time.........is very important if you are going to get tested, to be off doxy, since being on abx most of the time dont give you an acurate results, at igenex, there is a protocol to follow prior the test while you are on abx, maybe you want to call them to check that out...mine was indeterminate, but i having treatment anyway, my test for co infecciones were negative, i suspect i mugh have babesia... peru doctors dont think soo.. so i am not havng any treatment for that....and since i have improve a little, maybe i dont have it... is complicated.. because honestly..... a lot of infeccion diseases gives you the same symtoms, and when yoiu have a negative or indeterminate lyme test..you feel you still dont know whats going on..specially in my case, all blood tests are negative... but at least i think doxy takes care of many infeccions.i hope you find and answer soon, but is very important to go to an infeccions disease doctor and a good llmd.. you metion you have problems with your stomach, i take sometimes Zantac 300 at night and it helps... also the infeccion it self besides the abx upset your stomach...good luck!! hugs