posted
I am not seeing any progress with my current Dr. in New Jersey. I have Neuro Lyme and my symptoms are getting worse with oral antibiotics(muscle twitches, spasms, weakness, slurred speech, cognitive dysfunction, fatigue). I think I need a Dr. who will prescribe intravenous antibiotics.
The symptoms are really freaking me out. They all overlap with ALS.
My 4 month treatment thus far has consisted of the following:
first 3 months cefdinir 300mg twice a day and 100mg of Doxycyline twice a day.
The fourth and current month the Dr. stopped the cefdinir and added Bactrim (Trimethoprim/sulfamethoxazole) to the Doxycycline.
I am also taking Vitamin C, B complex, Magnesium, Selenium, Zinc, Knotweed, Cats Claw, fish oil, probiotic, Coq10.
Any advice?
Is this decline to be expected 3 1/2 months into treatment?
Any advice is appreciated.
Joe
-------------------- Joe Posts: 6 | From New York City | Registered: May 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Joe, I don't know much about cefinidir.
But I do know that from what I've read, and from my experiences, that if a patient does not have some response to abx after sufficient time, docs should switch to others.
Mine switched monthly, until we found one that helped.
Also, I don't see the refernece to Tinidazole or Flagyl in your post.
What is your doc using to help attack the cyst or L forms of lyme?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I am not on any other abx's than the ones I mentioned.
I guess that's what has me wondering if I need a new Doc who is more aggressive.
I'm feeling worse and that is what scares me. The last 3 years have been hell.
-------------------- Joe Posts: 6 | From New York City | Registered: May 2012
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gmb
Unregistered
posted
Pro
Its difficult to advise so early into your treatment. Yes, in most cases you will feel worse after starting treatment.
You may need to reduce the bacteria load before getting more aggressive. I did change my LLMD after 1 year to better treat co-infections. Once I started to treat Babs, which I didn't think I had, my symptoms got worse and new symptoms popped up.
I did eventually start IV and it took 9 or 10 month before I saw progress. I think th 15 months on IV got Lyme in remission but I still struggle with Babs or some other blood parasite after being in treatment since March 2010.
Its a long road. You might want to make an appointment with another LLMD, it may take six months to get in. Stay the course for now, and in six months ecide if you want to change or cancel the appointment so someone on a wait list gets lucky.
Also, the fact you added Bactrim this month and are feeling 'worse' sounds like it may be a co- infection,
Bartonella or babesia. Hang in there--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
joe, how long have you been ill with lyme & co?
Getting worse before you get better is pretty typical complaint when you are trying to kill of a bacteria that is as complicated as the lyme bacteria.
Every day you take abx and any lyme bacteria get killed, there's a release a toxic matter that even worse than the happy lyme bacteria.
How are detoxing dead toxic matter from your body? When the organs like the gall bladder, liver, kidneys, spleen are over worked and full of toxic matter......you are going to feel worse and show an increase in symptoms.
Some people do have to switch up their abx routine every 3-4 months, because this bacteria is smart enough to change it's structure and hide from abx. Are you one of those people?
Or is your body screaming for help from the toxic overload?
One can only answer those questions with some experience under their belt on dealing with this illness.
I would go with the detox methods mentioned by surprise above now and see if you can't see improvement in some symptoms.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
For patients with severe neuro symptoms, the best doctors generally will prescribe IM (intramuscular) bicillin injections (shots in the butt). Some will do this for 3 months or so and if no improvement, will put you on IV. Others would put a patient like you on IV immediately.
Are you saying that your doctor does not do IV for anyone? If so, you should go to a lyme doctor who offers the full range of lyme treatments from IV to IM to oral medications.
This way, you could get whatever treatment the doctor believes is appropriate.
Here is a quote from Burrascano for you regarding the IM bicillin:
"BENZATHINE PENICILLIN Comparative studies published by Fallon et. al. at Columbia University have shown that parenteral therapy is superior to oral therapy in chronic patients. Options include intramuscular long acting penicillin G (benzathine penicillin, or “Bicillin-LA”) or intravenous antibiotics.
For an antibiotic in the penicillin class to be effective, time-killing curves show that significant levels of antibiotic must be sustained for 72 hours. Bicillin LA is a sustained release formulation that meets these criteria.
Published studies in children and adults, combined with over a decade of experience with this therapy by front line, Lyme-treating physicians have established the efficacy, safety and usefulness of this medication. In many patients it is more effective than oral antibiotics for treating Lyme, and compares closely to intravenous therapy in terms of efficacy if the dose is high enough.
It is usually administered three or four times weekly for six to twelve months. It has the advantage of being relatively inexpensive, free of gastrointestinal side effects, unlikely to promote the overgrowth of yeast, and has an excellent safety record spanning many decades." (page 16)
From what I gather my Dr. seems to not use intravenous abx. I'm not sure about Intramuscular. He says that intravenous are not usually necessary.
I know that he has ILADS plaques on his wall, and was referred to me one of the Lyme websites but I forget which one.
He's the type who doesn't divulge much info so I'm a little frustrated in regards to having my questions answered.
I grew up in a rural area of Ohio and was bitten multiple times by ticks as a child. I have a feeling the stress weakened my immune system and exposed the underlying infection. It's also possible that I was bitten upstate NY during multiple camping trips 4 years ago.
I tested positive through Igenex with 5 positive Igm bands about 5 months ago. I also had 2 Igg bands. All the confection tests came back negative although my EBV titer was very high.
My problems started about three years ago during a very stressful time in my life. The initial complaints were depression and severe anxiety along with some OCD tendencies. After the stress ended my body and mind never fully recovered and that's where I'm at today.
My mood is relatively stable and my main complaints are neurological in nature as I stated earlier. They seem to have worsened since starting the abx. I have also lost about 10lbs since starting the abx and my face is noticeably thinner which really bothers me.
I'm really confused as to what to do and who to believe.
Is weight loss, twitching, weakness, and spasms typical with neuro lyme? It feels like I have to tell my legs to move and walking is difficult. My balance is also screwed up. I'm considering going to see a neurologist but hesitant to open that can of worms.
Any other advice?
-------------------- Joe Posts: 6 | From New York City | Registered: May 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To help with neurological symptoms (including mood, anxiety, twitching, OCD tendencies):
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, all that addresses support. All that is absolutely vital to success of any protocol.
Sorry that I just can't address the infection - doctor - treatment questions you have. Hopefully, others will help you with those aspects.
It can be a gruelling process, though, even with the best support. If you know your doctor is good and that you are on track, just know that others have gotten better over time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: Ten pound weight loss that does not thrill you.
I would not be concerned at this point in time as, later, lyme often causes "undeserved" gain and it may even out. Do mention it to your LLMD, though. A blood glucose test might be considered with the next blood draw. A good idea for everyone, anyway.
What I suggest to everyone with either weight gain or loss is to just focus on good food, enough of it and avoid all processed foods.
Gluten can cause either loss or gain and if you are still consuming foods with gluten this may be a good time to stop. Many LLMDs suggest their patients be gluten-free. You need not consume less calories or nutrients as there are still dozens of foods to enjoy.
See the "Hidden Sources of Gluten" here -- and the film "Genetic Roulette" about how GMO foods can affect us:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Decline is expected. I slid backwards on my fourth month as well--lost weight too. Once you start hitting lyme and company, other co infections pop out. Now would be a good time to re test. That was when I switched docs and discovered more co infections. But your current LLMD can re test you too.
Some people have a problem with bactrim. For me, it hit the bugs big time (major herx). Sliding backwards is usually due to a missed co infection. Parasites would be at the top of my list. Testing is highly fallible though (considerable false negative rate).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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