Hello Everyone. I need some advice. I have been seeing my LLMD since Dec. I have been diagnosed with late stage lyme of 20 yrs.
I literally fell apart this last year both physically and mentally. I just could not keep it together anymore.
Suicidal and harming myself. This LLMD gave me hope and did a ton of testing. Went through Igenex for Lyme. MY whole system is a mess.
Took her 2 months just to get my system strong enough to tolerate oral antibiotics.
After adding Amantadine this last friday to Azithromax I herxed so bad I couldn't walk this last weekend. My LLMD today dedided to pulse my antibiotics. I have only been on antibiotics for 2 weeks.
I saw my ND today for acupuncture for the immune system. She is very unsure about the lyme test and stool sample tests and the VCS test and really wants me to get a second opinion.
She wants me to go to this infectious disease doc for more advanced testing. She said after 3 months seeing this LLMD she couldn't believe what bad shape I was in because my feet and legs hurt so bad today I was having trouble walking.
MY ND thinks I should be improving by now. I tried to explain that the treatment was almost worse than the disease but she encouraged me. I'm tired.
My brain doesn't work. I really cried a lot today.I have fought this for 20 years. I am in pain. I have lost my job and going for disability. Some days I can't walk.
I have seen lots of docs. But my ND really believes in this guy.
So my question is...have any of you seen an infectious disease doc and done any advanced testing and has it helped?
Thanks to everyone that responds,Cathy
[ 13. March 2007, 10:26 AM: Message edited by: Cathy DeVoe ]
Posted by mag (Member # 8920) on :
cathy,
i can't imagine going through this for as long as you have - and holding on .
I think you should give your self more credit for going through it.
Reading about the psychological changes with Lyme has helped me get through the "low" stages. Have you talked to your doc about taking some meds to get you through this part
From every thing I have read - Igenex is one of the recommended labs in the US for Lyme testing
There are a few tests that will help to your practicioner to address you immune system's response to treatment
Dr B. discusses the CD 57 in his protocol
There is an old post on TH1 and TH2 - the immune system balance and what some people are using for balancing
You started your treatment after dx in December, -Are you on any alternative stuff- some of the herbs seem so much gentler on the body.
After 20 years of fighting this - your body must have a lot of damage to undo and healing coupled with fighting lyme and the clan of coinfections
With that perspective - maybe 4 months is too early to say " you should be improving by now"
I am so sorry that you have been through all this - It is certainly a tough road to go through
hope you get so more answer
will pray for you to get well
mags
Posted by bettyg (Member # 6147) on :
cathy, you should have the newbie links i sent you last month. please if you feel suicide, call the 1-800 no. shown at the beginning of my info! WE ARE ABOUT YOU! we're walking thru the lyme disease and will help you every step of the way ok!
4 months is too soon to see huge difference for 20 years. i've had this 37 years, and i've been in treatment less than 3 full years. gone downhill; not up hill!
please answer my private message i sent you too ok! Posted by LisaS (Member # 10581) on :
i just want to mention that not too many of us have had good luck with Infectious Disease
Docs. They know about as much about lyme as the average duck. So just be careful if you go
that route. I hope you find someone to help y ou soon.
Posted by mag (Member # 8920) on :
hi again
I went to an infectious disease doc In CA one of the top notch -higly recommended and so on! I had severe neuro symptoms with a terrible MRI, on disability for the confusion, etc,.
The doc said i had radiculopathy from my anemia - After that i went ape and got every herb in town. I took 5 more doc afer him and 7 months to get a clinical and diagnostic diagnosis - from an LLMD
After there recent update for for Lyme treatment -there will be few if any of the infectious disease MDs that will know enough about lyme and the coinfections
thats my story with the infectious disease clan
mags
Posted by groovy2 (Member # 6304) on :
Hi Cathy
I have been sick 20 years- Lyme and Babs-
I was Very sick - similar to you --
It takes Time - Work and some Luck to get threw this--
Nothing in this is going to happen fast - except herxing --
You have to work at this with all you have--
thing like eating good -rest- lower stress- drinking Lots of Tea -- taking meds on time- and correctly--ect
Small things Add up --
I can still remember the day 15 months ago that I felt almost OK for just a minute one day-- then I felt Ok for a minute or 2 a few days later --
Now after 3 years of treatment I feel Perty Good most of the time--
If I can get this far -- You Can Too --
Its a Long Ruff trip and Deffinatly No Fun - but you can do it-
You are most likely going to get sicker for awhile-
Its one of those No Pian No Gain type problems --
If you are comfortably with the Lyme DX then seeing other doc will most likely fog your dissions--
Hope this helps--Jay--
Posted by caat (Member # 2321) on :
I agree with Jay. The most important thing to do when you have brain fog is to stay compliant and stay on treatment. Yes, it will get worse before it gets better, but it will get better. If you don't treat it and be consistant it will definitely get worse and worse hon. Better to stick with it.
Posted by Cobweb (Member # 10053) on :
I have a whole list of specialists in my medical history-but the only one I listen to regarding lyme is my LLMD.
I need to keep it simple. I trust that she will bring me through this walk through the valley of the shadow of death.
Even when another doc prescribes something I run it past my LLMD first.And when I am occassionally confronted with the naysayers in the medical community I just think to myself-they don't know nothin' about lyme.
I keep a symptom chart and she bases her next course of action on what's improving and what's not. Head/brain issues have been my main problem.
Personally I wouldn't go anywhere near an ID doc. Lyme, especially when it has such a long time to disseminate, as it appears yours has, will take a long time to resolve.
Any doctor telling you that your lyme should be cleared up or better by now is really old school and uninformed about the severity of lyme.
When my LYME doctor and only when my LYME doctor tells me she can't do anything for me any longer-then I might throw in the towel.
Meanwhile it's been 11 months-and I still consider myself a newbie. The despair you feel is unfortunately part of the landscape we are all too familiar with-but others have plodded along ahead of us-and MADE it.
Stick with the winners-even they have been known to whine from time to time.
Carol
Posted by clairenotes (Member # 10392) on :
I have a sense that your ND does not have a good understanding of lyme disease and its' healing process, which is often so different than with other illnesses. And if that is the case, watching your health decline with treatment could seem strange or alarming to her.
But I think that your LLMD sounds very responsible and responsive. There was a recognition that you needed help before beginning an abx regimen. And then, when things got rough he/she has switched you to pulsing to slow down the herxing, presumably (very appropriate in my opinion).
Still, make sure to ask a lot of questions about medications etc., along the way. Finding the right combinations at the various stages along the way, and in the right porportions is kind of an art, it seems. And it is true that there are alternatives if abx cannot be tolerated (my own case).
Best wishes,
Claire
Posted by Vermont_Lymie (Member # 9780) on :
Hi Cathy,
Hang in there! You will get better with a good llmd.
But it will take time, more than 4 months to feel better. That is a short time for 20 years of untreated lyme. You will need support while in treatment.
Unfortunately, the bacteria make us feel pretty awful as they die off. So feeling worse after starting antibiotics is a good sign!
You need alot of rest and good nutrition during this initial phase of starting treatment. I hope you can find some support and rest during this very early stage in your path to recovery. Be well and take care.
Posted by Cathy DeVoe (Member # 11271) on :
Wow! Everyone, I don't even know you and you have said such kind words to me. It means so much.
My LLMD stabilized me on psych meds and sleeping meds and then went after my dpleted system while trying to combat the lyme with herbs.
I did test positive for lyme.
But she decided the lyme was too chronic and we needed abx. WE will see and I especially like hearing your experience with the ID docs.
That will help me make a decision.
Thank you so much for your support!!! Cathy
Posted by northstar (Member # 7911) on :
Hang in there, you are on the way to improvement.
Die off and herxing have caused massive bone and joint pain for me.
I work with ND's, along with LLMD. The ND focuses on lymph, kidney, and liver detoxing. She also is a chiro, and focuses on getting muscles and fascia to relax so the lymph can move again.
Another major aspect is fungal issues which also need to be addressed, as they can cause similar symptoms in joints and brain. The ND works with anti-fungals and detox for this. (and diet, or course).
The ND also helps with supplements to rebuild reserves and neural/myeline system: there are many discussions on this website about this.
Lymph massage (Vodder) also was a big help in getting my brain to drain.
Everyone plays a part in recovery (except for the naysayers). Each had an important and unique contribution, each necessary, but not individually sufficient, in recovery.
I agree with the opinion that your ND is unfamiliar with the lyme healing process.
It took 6 months of abx before I recognized a spark of who I used to be. It was another 6 months before I felt in contact with the ground. At that point, physical stress brought severe joint pain, still. And another year before I felt confident that I was back again. And I can now experience stress, physical and mental, without a lyme joint or palsy flare.
Northstar
Posted by von (Member # 8333) on :
Quote from Cathy:
quote: She wants me to go to this infectious disease doc for more advanced testing
Dear Cathy, So sorry to tell you.... the infectious disease docs do not have more advanced testing for lyme disease. Neither does the Mayo Clinic.
The most advanced you can get are the few labs in the world that actually do detailed lyme testing.
Igenex is at the top of that list.
I have been to two infectious disease doctors on my quest for treatment. (here in OUR area, the 'top' in our area)
I had all of there 'advanced' tests. Which were negitive.
Recognize me?
Call me anytime.
Von
Posted by bettyg (Member # 6147) on :
here's your state's support group page i got from left hand side column:
good luck; i see someone from your state answered you as well! good! Posted by AGuess (Member # 5075) on :
Cathy,
I can only tell you that it will take you a lot longer than 4 months to feel better.
It is estimated that I had Lyme for 15 - 18 years before testing positive. 5 years ago, my life started really falling apart. Pain so bad that I could not stand on my feet and walk, my hands would become claws, I could not turn my neck or lift my arm above my shoulder because the pain would kill me. Actually, I thought about killing me.
Neuro problems. My voice would change like I was going through puberty (I am Male), I would have mild seizures (Stiff Man), floaters and flashes of lights in my eyes, ringing in my ears, loss of balance (walk into walls), Anger every night (Mad Man), fatigue, night sweats, etc. I was a mess.
So, I went from doctor to doctor, had blood tests, Lyme tests, MRI, CT Scan, Gastro tests, neuro tests, etc. Finally I was told that I had RA and that I needed to talk to a shrink because my problems must be stress related, because all of these board certified internal med and infectious disease doctors could not find anything wrong.
There is no such thing as Lyme in my area. I had never been to New England, so I could not have Lyme. On and on this went, until I found an excelent LLMD,who saved my life, my marriage, my business, etc.
Ok, it took me 5.5 months of heavy oral antibiotics, while I was still doing the RA treatment (Enbrel) before the pain in my feet and large joints went away. Yes lots of Herx events, yes days in bed, yes days when I wondered if I could go on.
Fast forward. It has now been 3.5 years. I have done oral abx, IV abx, Injectible Bicillin and am now back on oral's again.
I am now back to 95% of whole. Most of my problems are now gone and have been gone for almost 8 months. It does appear that I have a lasting gift of mild arthritis from this, but if that is all that remains, I will live with it.
I also tested positive for Babesia and have been treated for that. You must test for and clear up co-infections to get better.
Yes, take supplements. Mag, Vit B, etc.
If you have tested positive by Igenex, don't let a ND talk you out of the treatment with abx. You will need years, yes years of treatment to get better. This is my experience and I have also seen this with others who have chronic or late stage Lyme.
It is not easy. You will have days and months where you hate life, this disease and people around you. Your friends and family will not understand what you are going through, so find a friend on this site or I hope you have a good friend you can talk to and talk when you feel down.
You will get better. It took about 2 years and I started seeing real improvement. You will also.
Good luck in your journey. Stay with it.
AGuess
Posted by treepatrol (Member # 4117) on :
Getting a good Id Dr is like getting a tick on you in the middle of the Atlantic ocean. Bad odds
Posted by humanbeing (Member # 8572) on :
I have been where you are with pain and depression. Just want you to know it is normal to set aside two years of your life to get back on track...maybe longer.
This is shocking to me but with chronic lyme, that's how smart the bug is.
Also, I noticed that you are taking amatadine...check out the following info from the product information...
"A small number of suicidal attempts, some of which have been fatal, have been reported in patients treated with amantadine. The incidence of suicidal attempts is not known and the pathophysiologic mechanism is not understood.
Suicidal attempts and suicidal ideation have been reported in patients with and without prior history of psychiatric illness. Amantadine can exacerbate mental problems in patients with a history of psychiatric disorders or substance abuse.
Patients who attempt suicide may exhibit abnormal mental states which include disorientation, confusion, depression, personality changes, agitation, aggressive behavior, hallucinations, paranoia, other psychotic reactions, and somnolence or insomnia. Because of the possibility of serious adverse effects, caution should be observed when prescribing amantadine to patients being treated with drugs having CNS effects, or for whom the potential risks outweigh the benefit of treatment. Because some patients have attempted suicide by overdosing with amantadine, prescriptions should be written for the smallest quantity consistent with good patient management." http://www.mentalhealth.com/drug/p30-s05.html#Head_2
I have never tried this drug but be careful as lyme also causes many of these psych symptoms.
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