I saw my new doctor today and she, after spending two hours with me, feels I have Bartonella, Babesia and Lyme. She is sending my blood to Igenex and I have a follow up with her in 4 weeks.
I have some other concerns though. I hear people talk about migrating symptoms and pain. Why does mine tend to stay in one place. It is always me feet and left hand that kill me. However, each doc I have seen who is familiar with Lyme, agree that it is different for everyone. My sister in law just was diagnosed and had the bull's eye but all tests were negative. She had a high fever of 104, sweats, etc. I didn't have any night sweats or a high fever but I also don't recall taking my temperature when this all started. But, I did have some days my temp dropped to 95 or 96. Is this all weird?
My new doc didn't seem phased by it. My symptoms all started with the pain and tingling in the right foot. Weird way to start????? I keep going back to that!
Also, there is the speculation that my MGUS(Monoclonal Gammopathy of Undetermined Significance) is being triggered by the infection. However, I am still seeing an Oncologist/Hemotologist to monitor the protein spike. Today he decided to put me on Prednisone! Is this a bad move? He said this could lower the protein spike and possibly help my symptoms if the MGUS is causing all this. I am so confused I am spinning.
So now I am taking the following: Fluconazole for Lyme from the PA doctor. An anti-inflamatory medication from my Podiatrist. I forget the name. Neurontin from the Rheumatologist and the Hemotologist. Synthroid from the Lyme doc in PA. And now, the Prednisone!
The new doctor I am seeing does not like the idea of me taking Synthroid for the Thyroid issues for fear my body will stop producing on its own since the synthetic type is available. She said she may want to do herbs, etc.
Thanks for listening....
Rich
Posted by sixgoofykids (Member # 11141) on :
Prednisone? Why Prednisone?
You should not be taking Prednisone unless your life depends on it and you are on heavy abx! It will make the Lyme worse.
Posted by lymednva (Member # 9098) on :
I would not start the prednisone without communicating with your LLMD.
Perhaps the hematologist would initiate a call, which would probably result in a faster response, and perhaps some education!
Posted by richedie (Member # 14689) on :
The Hemotalogist does not believe I have LYme. He said, your tests from Quest are negative and you did not see a bull's eye...."you do not have Lyme." he said. My PCP said the same thing....although they treated my sister in law with a negative test because she had the bull's eye. Her symptoms were also a bit different although they took her symptoms seriously because she had the mark....not me.
Anyway, my doctors say doctors who specialize in Lyme and coinfections are snake oil salesman so they think I am crazy. However, I am told due to the MGUS, I have to keep an eye on it through a hematologist. He wants the Prednisone to hopefully lower the protein levels to see if that is what is causing the symptoms. Remember, he believes there is no Lyme or infection involved. Interesting that the biggest theory on causes of MGUS is infection. still funny why mostly older people are found with MGUS.
I could ask my new Lyme doc from MD to call him???? I don't know what to do...but I don't want to burn nay bridges. He wants to see me in 6 weeks to see how I am doing on the prednisone. Maybe I should have cancelled all doc appointments till after going through treatments witht he Lyme specialist.
Posted by sixgoofykids (Member # 11141) on :
I would not start on the Prednisone. I would talk to your new LLMD (if you've seen him before) or I would wait till after you see him.
I don't think there's any sense in a doctor who thinks you don't have Lyme helping you with your symptoms. If you choose to, then I would run everything by the LLMD first.
My gynecologist said that my LLMD was a scam ... I stopped seeing that gyn.
Posted by lymeinhell (Member # 4622) on :
We're not doctors here, but can tell you that Prednisone will make your quality of life SO MUCH WORSE, you'll kick yourself after you do it (unless you end up in the ER first). And it's been our experience here that most need to learn lessons the hard way.
Prednisone shuts off your immune system. So if your immune system is under attack already by 3 insect borne bacteria, why would you shut it off and let the infections run rampant?
From my own experience (and yes, I learned the hard way), you will temporarily feel better for a few days, and then your life will go in the toilet. I personally ended up with blood pressure at 170/110.. because one of it's lovely side effects is raising your blood pressure and pulse.
So if you want to listen to your DUCKS and ignore the advice of your LLMD, do so at your own risk.
Any doctor ignorant enough to tell me that I didn't have Lyme because my test from Quest (eee-gads, could they find a crappier lab to rely on) was negative, I will tell to kiss my grits and run as fast away as I could. And I have.. again, all learned the hard way.
Posted by richedie (Member # 14689) on :
Keep in mind, I do have MGUS and that is why I see a hematologist. However, I may call his office and tell him I started seeing a specialist for Lyme who advised to not take the Predisolone and go from there. I believe this is Lyme and so does this new octor in MD who I have seen once already. She sent my blood to Igenex. If it comes back with some positives, I am going to relay this to this doctor as well and let him know.
You guys already know that most mainstream MDs do not believe Lyme is possible without a positive test nor rash...not all but most. This is the problem. If there is some chance this turns out to not be Lyme, I still need a Hematologist.
However, to be honest, I found a Hematologist at the University of Pennsylvania who I like better than this guy. He was more thorough in explaining things to me and very open to the discussion of an infection causing MGUS and Lyme. Good guy. I should just switch. The one I see now was highly recommended but he seems quick to medicate.
I am going to let my LLMD know about this. Maybe she would call him to discuss? Not sure.
Also, I am not having issues with inflamation...this is just to get the protein down he said.
[ 09. July 2008, 05:18 PM: Message edited by: richedie ]
Posted by richedie (Member # 14689) on :
Keep in mind, I do have MGUS and that is why I see a hematologist. However, I may call his office and tell him I started seeing a specialist for Lyme who advised to not take the Predisolone and go from there. I believe this is Lyme and so does this new octor in MD who I have seen once already. She sent my blood to Igenex. If it comes back with some positives, I am going to relay this to this doctor as well and let him know.
You guys already know that most mainstream MDs do not believe Lyme is possible without a positive test nor rash...not all but most. This is the problem. If there is some chance this turns out to not be Lyme, I still need a Hematologist.
However, to be honest, I found a Hematologist at the University of Pennsylvania who I like better than this guy. He was more thorough in explaining things to me and very open to the discussion of an infection causing MGUS and Lyme. Good guy. I should just switch. The one I see now was highly recommended but he seems quick to medicate.
I am going to let my LLMD know about this. Maybe she would call him to discuss? Not sure.
He said this is just to get the protein down he said.
My Lyme doctor said she wants me to go and see my other hematologist for another opinion and if he agrees not to treat with Prednisone now, to have him send a letter to her.
Posted by cantgiveupyet (Member # 8165) on :
Please before going on predisone, get a 2nd hematologist appt, If it were me I would get down to Penn if at all possible. In cases like yours always get a 2nd opinion.
Either way i would call your LLMD and ask her view on predisone.
I was put on it before i knew i had lyme, and let me tell ya i thought i would die.
My pcp who was new to me, and didnt know my history, put me on it with zmax. He couldnt even tellme whihch med i was reacting to , since i had never been on any of them.
He yanked me off all of them, and was so beyond puzzled at the reaction he was seeing in me.
I believe the predisone messed me up big time, i think the zmax would have kicked it and kept it at bay, but the predisone forced it out and thus im now disabled.
all this being said i dont have MGUS. I would consult with your llmd, since every peroson is so unique.
Posted by richedie (Member # 14689) on :
Well, thanks all! I am not doing the Prednisone. I am seeing my other hematologist at Penn who is more open minded and understanding about Lyme and all. My Lyme doc said it would be great if he could send her a note saying that he does not advise prednisone....to help her get off the hook I assume. I don't want anyone getting in trouble.
I got one positive band for B. burgdorferi. Hopefully I will get my tests back from Igenex within a week or two and have more information.
For now, I am telling my current hematologist that I do not feel comfortable taking prednisone and want to cancel the prescription to possibly be explored in the future. I am sure he will understand. Not sure I should mention Lyme or not. He is pretty closed minded to that although I did get one positive band if that helps.
Posted by Lymetoo (Member # 743) on :
Good move on not taking the prednisone. It could defeat your recovery before it even begins!
Perhaps the WB will come back positive and you can show that to the dr who prescribed the pred.
Posted by richedie (Member # 14689) on :
I got one positive band for B. burgdorferi. What does this mean?
Posted by djf2005 (Member # 11449) on :
prednisone is the reason i and many others are here. i took 2 days worth for what we thought at the time was an "inner ear infection" and here i am nearly 2 years later disabled and ****ed to say the least.
thank god you didnt take that crap. if i could relive one day of my entire life, the day i took the prednisone would be it. i am hopeful i will recover fully as i will not settle for anything less but i realize i am up against a greater fight than most because of the prednisone administration. i am so glad you decided not tot take it.
who did you see? dr c?
derek
Posted by Keebler (Member # 12673) on :
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I cannot tell by your post if you are seening a LLMD. I cannot tell if you've been evaluated by a LLMD.
You said you are taking " . . . Fluconazole for Lyme from the PA doctor. . . ."
I don't know if that is enough protection if you are using steroids. Does your PA doctor know you are starting steroids?
As you may have other infections, where would the protection/treatment be in place for those BEFORE steroid use?
Please, unless you are on specific abx as indicated for specific infections (and prescribed by an LLMD) and the steroids are to save your life NOW - please reconsider.
If you have infection, the infection can cause the inflammation. Yes, your doctor considers that. But the infection must be treated and the inflammation will respond. By treating the inflammation with steroids, the infection can BLOSSOM.
Please, consult a LLMD about the prednisone. And do not assume that just any abx will offer protection. It has to be the right combination according to what infections - and what stages are being addressed.
Even with abx, steroids can be very dangerous with infections and should be used only in emergencies and under guidance of expert and experienced doctor in the use of this approach - preferably one who has had hundreds - or more - lyme / TBD patients.
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Regarding using prednisone, many of us have had disasterous results due to its use before we knew we had lyme. Here is some information about that. You can do a search here of previous threads with the key words "prednisone" or "steroids"
"More evidence has accumulated indicating the severe detrimental effects of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course."
B's 2005 Lyme guide says "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.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids.
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The 2005 Guide's LYME BORRELIOSIS heading says,
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
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current ILADS Treatment Guidelines can be found at www.ilads.org
"Steroid Disaster" is a term coined by the pioneer of Lyme Treatment, Dr. Burrascano (see link at bottom of page).
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix!
. . .
Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
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.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.
"Corticosteroids, or steroids as they are commonly called, are very important drugs in a wide variety of medical conditions. They exert an anti-inflammatory effect and suppress the immune system.
This may be life saving in some diseases such as asthma and malignancies.
On the other hand, steroids are rarely curative, and are associated with harmful side effects if used for prolonged periods of time.
These include bone loss, cataracts, sodium retention, weight gain, abnormal fat distribution and predisposition in other infections.
"The use of steroids in infectious diseases has always been controversial. It is well known that steroids can reactivate dormant tuberculosis infections.
Recent studies have shown that in meningitis infections steroids may decrease the incidence of post infectious complications. However, in cases of septic shock, their ability to improve survival rates is dubious.
We have been traditionaly taught that in bacterial infections an intact, well-functioning immune system is necessary in order to recover. Steroids in the face of bacterial infections may alter the prognosis and in tuberculosis may actually increase the risk of fatality.
"Since Lyme is a bacterial infection, the question naturally arises as to what is the role of steroids in Lyme disease. Before the bacterial nature of Lyme was discovered, it was common to treat the arthritis complications and heart blocks with steroids. Early reports suggested that the heart blocks responded well to the steroids.
However, in one report dealing with patients with Lyme arthritis, steroid injections into the joints prior to antibiotic therapy were associated with a worse prognosis when antibiotics were finally given.
We have seen literally dozens of patients with Lyme who were initially treated with steroids who reported a dramatic worsening rather than improvement as would be expected. Dr. Joseph Burrascano has coined the expression, ' Steroid Disasters, ' to describe these patients.
"It is interesting to note that in dogs who had Lyme disease, injections of dexamethasone, a corticosteroid, enabled Borrelia burgdorferi to be cultured from blood drawn on the following day. This was done by Dr. Elizabeth Burgess at the University of Wisconsin.
This suggests that the steroid suppresses a mechanism for keeping the bacteria out of the circulatory system, since ordinarily it is difficult to grow the Lyme organism from the blood.
Entrance of the bacteria into the bloodstream can allow seeding of other organs.
"I have used steroids in Lyme patients, but only in very selected circumstances.
In patients who have presented with eye involvement with rapidly deteriorating vision, such as optic neuritis or uveitis, the combination of high dose steroids appears to restore vision more rapidly than by using antibiotics alone.
I have also used steroids in combination with antibiotics in patients who presented with a Lyme induced polymyalgia rheumatica (PMR).
"PMR is a common disease of elderly people characterized by pain and stiffness in the muscles of the upper arms and legs, fevers, malaise and weight loss. The ESR, sedimentation rate is elevated.
In its classic form, the cause of the condition is unknown, and the dramatic response to steroids is in itself diagnostic.
I have personally seen three cases of Lyme induced PMR, which did not respond to steroids alone or antibiotics alone, yet when the combination was given the response was dramatic.
"In conclusion, the decision to use the steroids in a Lyme patient must be given considerable thought and the possible benefits must be weighed against the risks.
I would not use steroids unless the patient was also on antibiotics."
=======================================
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Posted by richedie (Member # 14689) on :
Derek, you are near Philly, right? You meanr who did I see for the MGUS? I saw Dr. C in Bryn Mawr. My LLMDs are Dr. F in PA and Dr. L in MD who trained under Dr. S in MD and Dr. B in NY. They said, no Pred! Is it really that bad? Wow.
Keebler, I am seeing two LLMDs. See above what I said to Derek.
Fluconizole is from the PA doc, that is how he teats, abx optional. Again, I did not get the prescription and am telling my hematologist I do not feel comfortable taking these now. I am afraid to tell him about the LLMD so I may not. My other hematologist is open minded and I want him to maybe talk with Dr. L and maybe send a note saying he does not advise Prednisone
Yes, I was evaluated for over two hours by the LLMD in MD. She sent my blood to Igenex.
One thing that ****ed me off was my primary gave me a flu shot back in November when all these symptoms started even though I have never taken one. I am a big believer in the power of the immune system so I have always kept myself strong through proper organic whole foods diet and exercise. I was upset, he basically sneeked it on me!
Are there other meds to avoid???? My podiatrist gave me an anti inflammatory drug, Meloxicam ( my LLMD knows about this), also the hematologist and rheumatologist prescribed Neurontin or Gabapentin. My other LLMD gave me Synthroid but my current LLMD in MD says she is not a fan of that approach and prefers herbs. The PA doc gives me Fluconazole.
Posted by richedie (Member # 14689) on :
Is it significant that I got one positive band for B. Burgdorferi AB(IGM)?