posted
Ok I wanted to post my Dr's visit. I was in a pretty bad funk today, so I clammed up at the office. I Did not ask him about Burrascano! I did however ask him about Co infections. He had tested for Ehrlichia, but not Babs or Bart. He sent me to LABCORP for the following: Lyme elisa Cd57 Babesia Bartonella - Now I understand that Labcorp is not so good. What will these Igenex tests do differently?
- He ordered 2 more weeks of IV Rocephin, after which he wants 60 days of 400mg Suprax(Cefixime) along with 250mg Zithro.
I asked about a Cyst buster, he was not opposed to the idea, though he said that the cyst busters do not kill the disease, and you still need to treat the Lyme. He also said that he thinks my neuro symptoms are Lyme, and that the brain lesions are Lyme. Not sure how he made this assesment. One final and important thing. I have been whining to anyone that will listen about my ears. They are clogged beyond belief. I was so badly messed up last June that I COMPLETELY lost hearing in one ear. My ears have been clogged for a good 4 years now. He said that My Eustachian tubes are inflamed, which I will agree with! HOWEVER, this Dr prescribed me MEDROL to take after my oral ABX is completed. MEDROL is a steroid. Aren't steroids completely detrimental to Lyme treatment? Is Medrol any different? Will this help my ears in the short term but completely ruin my treatment? This raised some red flags for me in a big way. - So should I ditch this Dr? Is the Suprax/ Zithro combo any good? Im still confused and on the fence here. And frankly, I dont think I can afford Igenex tests. Little help?
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posted
my right ear was clogged three weeks ago, but it unclogged with a little bit of some steroid nose spray. Maybe just hit it with something much weaker and more local like nose spray?
Posts: 366 | From Europe | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- " . . . this Dr prescribed me MEDROL to take after my oral ABX is completed . . . ." ---------------
It's bad enough to have this prescribed for a lyme patient but AFTER abx tx? AFTER? Without, at least, some protection? Oh, my. And that would be 2.5 months from now?
Are you sure he's an ILADS-educated LLMD.
Any doctor who prescribes MEDROL for a lyme patient is not ILADS-educated. Yes, MEDROL is a steroid and steroids are to be avoided for very serious reasons.
But, since you are not to take the MEDROL for another 2.5 months (when you finish this phase of treatment) - talk to him about this at your next appointment. No matter what anyone here writes or posts, always talk one-on-one with the doctor and ask questions. It's what you and the doctor deserve: communication at the source.
We post here what we've learned and hope it helps. Your doctor needs to have the chance to further address your concerns.
I will add that I took a couple MEDROL packs many years ago (ill but had no clue what was wrong). I felt such relief when on that but crashed hard and long each time they were finished. So, if you do take it, be sure to have adrenal support all the way around. Also have lyme protection, somehow.
While, once in a while, (as the previous poster) someone can get lucky and slip by with a steroid nasal spray, it could boomerang big time for another person.
Please don't use a steroid spray. Steroids are to be totally avoided for lyme patients unless a life-threatening emergency and taking specific antibiotics. Here's something else that won't make lyme blossom:
Seagate Olive Leaf Nasal Spray has 2000 ppm of grapefruit seed extract to insure excellent stability and antimicrobial properties.
==================
An ELISA test is a waste of time. Period.
Are you sure this is an ILADS-educated LLMD? He does seem to realize that lyme is hard to treat and can take a while (will he go beyond 2 more months?). However, I'm totally perplexed by his ordering an ELISA. It is a huge waste of time and money.
==============
See an LL ear specialist about your ears. If your LLMD does not know one, ask at your local lyme support group. An ear expert needs to look inside and maybe do other tests.
Specific for LYME patients - lots of details about ears and what can help, especially for lowering inflammation:
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.D.
Excerpts:
. . . "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.
. . . 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 intraarticular steroids. . . .
From page 12:
. . . 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. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).
From: NUTRITIONAL SUPPLEMENTS IN DISSEMINATED LYME DISEASE
J.J. Burranscano, Jr., M.D. July 2008
Excerpt from page 4:
VITAMIN D
Surprisingly, most people in America are vitamin D deficient. In the lyme patient, low vitamin D levels can cause diffuse body aches and cramps that are not responsive to magnesium or calcium supplements.
Some also believe that vitamin D is essential for normal immune and hormone function. I strongly urge you to have a fasting blood level drawn. It is recommended that blood levels be in the upper half or the normal range.
If it is not, then 2000 to 4000 units daily are needed for several weeks to make up for the deficit, and then a lower maintenance dose may be necessary, based on results from repeated blood level monitoring. If vitamin D is needed, improvements take 2 to 3 weeks to note, but are well worth the wait. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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WildCondor
Unregistered
posted
If this is Dr. D then he has good reviews and you should probably give him a chance. The Medrol is clearly for the ear inflammation, not Lyme treatment and is probably a temporary fix. Still, you do need to treat what is CAUSING the ear problem.
The Zithromax dose is very low though, he may have done that for the ear problem though, since it can cause ear ringing. Usually for Lyme Zithromax is 500-1,200 mg/daily.
I'd give it a chance but be cautious and make sure you get treated thoroughly.
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lymeboy
Unregistered
posted
Yes it is DR D. I think he is a good Doctor. I think he is probably good at treating early Lyme. But I think the Medrol script shows that he does not fully specialize in Late Lyme. I really don't have time to wait it out and hope that he does the right thing. I will finish the Rocephin, and fill the scripts he ordered (except the ROIDS!). However, I will be seeing someone before the July 26 Appt I have scheduled with him. I am starting to get a little sick of the 15 minutes of "how are you feeling?" and then 2 months of hoping something better happens next time around. I do not have much faith in ANY Dr's. I have yet to see one that has impressed me with his/her bedside manner and expertise. They are mere pharmacists for the most part as far as I am concerned. I apologize to any doctors that frequent this board. Medical school is indeed a very difficult and immense accomplishment. You cannot ( or should not) complete medical school without a very sharp mind. But it does not make someone a genius. And in the case of Western medicine, what many Doctors have become are mere dealers with high IQ's. Sorry again. But this is how I see it. My attitude sucks....but I have plenty of reasons to feel this way. It isn't based solely on my own experiences. Anyway, sorry for that tangent. I do appreciate the comments here. Especially from Keebler. As always very helpful and informative. I guess the search for a real LLMD continues ....Ugh. - As for Dr. D., I believe he is a good Doctor. Very compassionate, and very proactive about Ins. co authorization. But I don't think that he will be curing my Lyme. I will follow his treatment guidelines and in the meantime try to find someone that will make me believe that this wretched piece of sh@#*! disease will die a violent and permanent death inside of me and never return!
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posted
I personally wouldn't take the Medrol... but you may get the same results ( and more safety ) with a steroid nasal spray as northernlights suggested.
Before dumping this dr (who sounds mostly good) I would first secure the services of a truly good LLMD. There aren't too many in NJ from what I hear.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
Lymeboy, you seem very wise and I think you are making the right decision to move on. You have to follow your gut instincts on this one. Glad you are educated and moving forward, it's nice to see that.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I can appreciate your attitude about this. I used to live in northern NJ... I know how it is there. One would think after all these years they would be a bit more knowledgeable about Lyme.
Maybe it's the swamp gas or something...?
Good luck in any case. I don't have anything medical to add about this situation.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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