posted
I would like to find a knowledgeable LD specialist in PA. Please help.
Posts: 2 | From PA | Registered: Feb 2012
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
What part of Pa?
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
PA info sent.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
this is in response to dekrator48, I'm kind of in the same boat, diagnosed with fibro for 8 years not and constantly thinking if it was lymes all along, was recently diagnosed with the lyme and rocky mountain spotted fever as my wonderful co-infection back in june, but I don't know, my fibro symptoms seem to be so fibro specific and i had all the lyme rashes back in june which i never had before, which i'm thinking could it be that i didn't have the rash 8 years ago but was reinfected 9 months ago and that's why i got the rash? My life has been hell the last 8 years but not as bad as it is now. But the pain has always been in my muscles, never joint pain like now. I don't know any thoughts on this?
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
shannon12, I didn't get a rash the first time I got lyme years and years ago.
I got rid of my lyme 7 years ago (after 3 years of treatment). Then, just a few years ago, I got rebitten and got the rash.
I went back to my lyme doc. I told him that I had read that once a person has lyme, if they get rebitten by an infected tick, they will definitely get the lyme rash. He said he believed that was correct.
So, I totally agree that you were just bitten again 9 months ago and that the fibro has been lyme all along. The very specific fibro symptoms are lyme symptoms!
It is one way lyme can manifest itself in certain people.
I have had a number of girlfriends with fibro who all turned out to have lyme. They had the very specific fibro symptoms like the tender points, etc.
My lyme doc who cured me had a fibro diagnosis for years. Then, he got tested for lyme and found out he had lyme. Then, he tested all of his fibro patients (and he had many; he was sort of specializing in helping fibro patients and he was good at it), and 100% of them tested positive for lyme!
So, he treated all of them for lyme and they all got rid of their fibro.
Your life got worse with your bite 9 months ago because you added even more germs to your poor overwhelmed body. That recent bite could have also given you different infections that you have not had for the last 8 years.
Here is a quote from the Burrascano Guidelines on this subject:
"The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery." (page 4)
It is great to know that if I get bitten again for the rest of my life, I will get the rash. It really helps me to know, when I find a tick on me, that I am not infected. (I am a tick magnet, as are many lyme patients.)
Since I got to my lyme doc within a week of my bulls eye rash, I just needed 30 days of treatment. So, I have been cured of lyme twice now! Praise God.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
well thank you very much for your response, I've been thinking about your response pretty much all day and all I can say is I hope your right.
Not saying at all that is if has been lymes all along, it's now going to be easy to treat at all, but at least there's SOME hope, i've suffered terrible the past 8 years.
But I'm still going back and forth, you said the lymes can present as fibromyalgia symptoms like the tender points and everything, but some reasons why I don't think it was lymes:
Don't people with lymes tend to have flare ups throughout the years, but every day i can remember I've been in pain and extreme fatigue that has been pretty consistent. Another reason, what are the chances of being bitten at least twice? Obviously from all the stories it does happen.
Some reasons I think it has been lymes: I remember what I thought was the start of fibro I was sitting at work, my hand started to go numb and then it traveled up to my face and tongue, it only happened once and never again, until recently the same hand is going numb intermittently. With fibro I know you get the arm and leg tingling but i don't think so much the total hand and mouth numbness.
Another reason is I can remember getting chest pain throughout the years mostly w/excertion, but I just got out of the hospital a week ago from severe benign pvc's. (very scary) also not associated w/fibro.
I was tested for lymes 8 yrs ago be a llmd that also treats fibro(whom i am seeing now) he assured me he did test me but even admitted not extensively like he did this time.
Another is 8 yrs ago, I was getting these like neuro shocks throughout my body, kind of like having a heightened sense of awareness than going back to normal constantly, again back then they didn't last long, but now they're constant.
So I guess I am heading in your direction that is could have been lymes all along, but don't know if that's better because it's going to be so hard to treat, but I'm headed in the right direction. good doc. aggresive approach, i just have to make some lifestyle changes.
So I REALLY appreciate all the info you have given me so far, if you have a moment can you give me any more thoughts on this? I realize your not an md but since you've gone through this your probably actually the best one to get advice from.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Shannon,
I never had a rash and never even saw a tick bite when I got sick 24 years ago.
Dr thought I had a virus.
It is important to remember that the diagnosis of fibro only describes a symptom. It does not address the actual cause of that symptom...ie: a bacterial infection.
For many years I thought a virus caused my FM because the Dr told me at the time that I had a virus and things went down hill from there.
There is more than one tick borne infection that can cause FM symptoms, but it usually involves lyme.
Never settle for the excuse that it isn't Lyme, it's just FM....that is a cop out because FM has "no known cause".
I don't want to deal with Drs who are not willing to find the cause.
Many, many people on a FM/CFS board that I am on, later found out that they had Lyme (and coinfections).
So, if it looks like a duck and quacks like a duck....it's probably a duck.....aka lyme.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
I also had no rash. I never believed the docs who misdiagnosis my lyme disease, I just knew in my heart there was more to my symptoms (fibromyalgia +). Two of the doctors made me worst buy giving me steriods, 1 even gave steriods to me after I told him I suspected lyme disease.
They all had LYME symptoms in front of them and blew it! The 2 who gave me steriods knew better & I think they are in the business of making money, not healing folks first.
Dr. Burrascano's treatment guidelines (listed above in TF's reply), is what let Me know I was not getting the proper treatment for Lyme & Co with the lyme treating doctors here in Pa. Maybe they thought I couldn't read?
Remember a REAL LLMD & the treatment guidelines are the Keys to getting your life back. My LLMD who is out of state is right on the money with the treatment guidelines.
I went thru 6 docs 4 who treat lyme until I could get in with a real LLMD. I only know of 2 LLMD's in SE pa that follow the Burrascano lyme treatment protocol, which is VERY important! And they were backed up 10 - 12 months..
TF Walks the walk; I would listen to Her and not waste anymore time getting your life back.
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Shannon, you said:
"Don't people with lymes tend to have flare ups throughout the years, but every day i can remember I've been in pain and extreme fatigue that has been pretty consistent. Another reason, what are the chances of being bitten at least twice? Obviously from all the stories it does happen."
My reply:
I had episodes of illness for the first 5 years I had undiagnosed lyme disease. Then, my illness became full-time. I was totally sick every day for the last 5 years before a doctor figured out I had lyme.
In talking with fibro patients, many of them noticed episodes of fibro before the fibro became a full-time thing. So, again, lyme and fibro can look exactly alike, whatever you want to name.
I have found that the more a person learns about lyme disease, the further back they are then able to "see" the symptoms of lyme in their life. Think for a good while and see if you had strange episodes before the full-time illness.
Maybe you didn't. It all depends on how many germs that first bite gave you. If not too many, then you can fight it off and only get sick off and on. If you got a lot of germs right off the bat, then you can get sick full-time right off the bat.
What are the chances of being bitten twice? They are very, very good if you are a person who attracts ticks. Most lyme patients are tick and mosquito magnets. They are always getting bitten by ticks. Ticks flock to them. Ticks run a mile to get to them.
This is no exaggeration. Dr. J. who is the world's foremost pediatric lyme specialist says that some children make pheremones that attract ticks. So, they are the children that are most likely to get lyme disease.
He says that he can cure them, but they WILL get lyme again because of their pheromones.
When these children roll in leaves, or go in the woods, or sit on logs, or climb trees, etc. they get ticks on them. If a lot of ticks in their area are carrying lyme disease, they will get lyme again and again.
So, that is from the absolute best children's lyme doctor in the world.
Your pheremones (body "perfume" if you will) do not change over time. You will make the same pheremones as an adult as you did as a child. So, most lyme patients (adults) are tick magnets.
If you live in a part of the country that has a lot of lyme, and you make pheromones that attract ticks (like I do), then you should never go in the woods, sit on a log, lean against a tree, walk in tall grass, sit on a rock wall, pull weeds in your yard, etc. without being totally covered by tick repellant. After doing these activities, you must immediately go inside and check yourself all over for ticks. You will need the help of another person for this (to check your head, etc. carefully). You should take a shower to brush off any ticks on you, and you should throw your clothes in the dryer on "hot" for a half hour to kill any ticks on them.
This is what I was taught by my now-famous lyme doctor. The heat of the dryer will kill ticks. They can't stand being dried out. They can live through the washing machine with no problem.
You don't want ticks walking around in your house, so your clothes and pets that roam freely are all sources of ticks indoors. So is the Christmas tree, fire wood, mice in the house, etc.
I know I am not a normal person when it comes to attracting ticks. I can stand on our paved driveway for 10 minutes and go in the house and find 2 ticks on my leg. My husband can climb inside our shrubs and bushes and cut out vines, trim them, etc. and never get any ticks on him.
Same with mosquito bites. I get them when nobody else is complaining.
If all this sounds like you, then, dear one, you need to cut out activities that get you around ticks. It is a radical change of lifestyle for me. But, I already got lyme twice, as I said above. I don't want to get it anymore. My lyme doctor told me I had to make these changes. He even told me to sell my house (which backs to a woods) because we have so many ticks here.
I have found many ticks on me since getting rid of lyme. So, I now take greater and greater precautions, based on my experience.
I will not walk in a woods unless my life depends on it.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
thanks everyone for all your responses, I guess only time will tell, yes i can remember before what i thought was full blown fibromyalgia, having some wierd smyptoms here and there. Yes I do live in i guess a high area of lymes, northeast pa. I guess it all makes sense.
I'm getting my picc line in any day now, and I've been seeing an llmd in philly, my protocol is three wks of ceftin, biaxcin, and amanadine twice a day, then one wk of flagyl and amandine twice a day, i keep repeating the cycle along w/some herbals,
I've been doing this for 3 months now, I'm just so scared I just seem to be getting worse, and two weeks ago in the hospital for pvc's, and they didn't even address my lymes in the hospital, just sent me home, this is the scariest thing ever, ever since the hospital i just keep throwing pvc's my heart feels like it's beating out of my chest,.and my hands are burning they are so cold.
my family doctor does not believe it's lyme disease I even showed him my bloodwork, I am also positive for rocky mountain spotted fever, and he said we do not have ticks in northeast pa that cause rmsv??? And they said the pvc's are a side affect of the meds im on but i've been on them for three months.
I'm just sticking with my llmd in philly, going on iv rocephin and colloidal silver, and i'm to still stay on all my orals. Just really good to have people going through the same thing, I trust people on here more than I trust these family physicians that not only don't want to treat the lymes but don't want to even acknowledge it's needs to be treated.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Shannon,
I'm glad you have a LLMD and are getting treated.
It takes a long time to recover.
I am also positive for RMSF and I live in PA. I have traveled outside of PA also, and you may have too....but I got sick in PA.
Lyme can cause heart problems. I had a right bundle branch block that I did not know about until my LLMD did an EKG.
Treatment can cause symptoms to increase due to die-off of bacteria which creates toxins that must be eliminated. You will want to search the topic of "detox"...ways to help eliminate the toxins from the body.
Feel free to go to the Medical Questions board and create a post there, continuing your story or asking any questions you have.
Many more people will see your post when it is on the Medical Questions board instead of on the Seeking a Doctor board.
Just go to the drop down menu below and click on "Medical Questions" and click Go.
Then click on "Post New Topic" near the top of the page.
There is so much to learn and you have just begun.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
thank you im moving it to medical questions, I am so scared, I feel like I might die soon, I'm having suck bad chest pain, this just doesn't seem right.the neck pain is so bad it's making me sick, and I'm getting spacey again. thank you again for your help
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
shannon, I don't think this ever got moved to Medical Questions. So, so many more people will read your post if you put it there.
Can you write a new post in Medical and just tell a little of what you told here, especially what you just posted about being so scared you might die?
Then, many people who went through the same thing will respond. Also, if you want to give the first letter of the last name of your doc, others may give you opinions on whether the doc is good at getting rid of lyme or not.
How are you doing now? I am worried about you. It doesn't seem right to me that you are in such bad pain. I suggest you call your lyme doctor's office and tell them what is happening. The doctor may want to change your meds or add something new. Don't just lay there and suffer.
Please call.
Posts: 9931 | From Maryland | Registered: Dec 2007
| 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!
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic