My husband has had "lyme" since early summer 2011. He developed a terrible limp. He went through the breathing issues. He had the massive frontal headache, still has the stiff neck. Went through the chronic fatigue. Every single one of his lyme tests came back negative. Now he is on IV drugs. He took Rocephan for 2 weeks and his liver enzymes rose. Now he has been put on Claforan. We're waiting to hear from the latest blood work. He is definitely improved. His breathing is better. And he has just a tiny bit more strength in his legs. But every once in awhile I guess I have to be convinced its lyme and not ALS. Would he improve if it was ALS? Do the IV drugs make an ALS patient improve for a while. Very scary stuff
Posted by jackie51 (Member # 14233) on :
Has he ever been tested for ehrlichiosis? This travels with/without lyme and causes the headache. It does sound a little bit like babesiosis, that would cause the massive frontal headache.
Has he ever been put on oral doxycycline? I have no experience with Rocephan or Claforan, they don't sound like typical lyme treatment.
Find a copy of Dr. B's lyme guidelines and read it a few times. Find a doctor who treats using these guidelines. If he has lyme/tick borne disease, he can get better.
I'm so sorry you are going through this.
Posted by glm1111 (Member # 16556) on :
Check out the possibility of parasites which can cause the symptoms you decribe. I know, I had them, and when I started tx for parasites, I started to turn the corner.
Google parasite symptoms and check the symptom list at Humaworm. Dr. K. treats ALL of his patients for parasites FIRST and Lyme SECOND. He uses pharma meds extensively.
This is a real poss. since over 90% of the population are surffering from parasites and is the cause of most degenerative disease.
Gael
Posted by lpkayak (Member # 5230) on :
what kind of lyme tests? not that it even matters. some of the worst cases test neg.
was testing done at igenix? that is your best bet...but if you search testing on here you will see reasons why it doesnt matter
Posted by marypart (Member # 27012) on :
I don't know about Claforan, but Rocephin is standard treatment (especially IV) for neurological lyme. Even the IDSA and most insurance companies will approve a month of IV Rocephin for neurolyme. My son's LLMD had him do a month of IV Rocephin. It works well for a lot of people.
IMO-- and I'm not a doctor-- just my opinion-- if he is responding, keep on going. If it is Lyme he'll have a chance at getting better.
Posted by lyme-o (Member # 35115) on :
Just got his blood work results back from this week. Liver enzymes high again. Don't know where we'll go from here.
Posted by seibertneurolyme (Member # 6416) on :
Is he taking milk thistle or dandelion root or phosphatidylcholine? Any or all of those could help with elevated liver enzymes.
I would suggest finding an herbalist to help so he is better able to tolerate the prescription meds.
From the cases I have read about most people with ALS type presentation have both lyme and babesia. If he also has babesia that takes different meds than the lyme.
I am sure someone else will be along to give you some of the links to info on ALS/Lyme. But if he is able to tolerate the IV's and is improving I personally think that is a very good sign and an indication that the main problem is tickborne diseases.
There are several other IV meds which could be tried. These include zithromax, primaxin and vancomycin.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by lyme-o (Member # 35115) on :
thanks so much seibertneurolyme. I need encouragement every once in a while.
Posted by seibertneurolyme (Member # 6416) on :
lyme-o,
I can totally understand needing encouragement. For 10 years all the mainstream docs kept saying hubby had either anxiety or depression or atypical Parkinson's.
Finally after many different meds and herbs hubby's atypical seizures caused by bartonella stopped and his atypical tremors stopped with babesia meds.
The babesia is not gone yet -- if he is off meds for just a few days the tremors and myoclonus and dystonia start coming back -- but now we at least know which infection is causing these disabling symptoms and I am confident that if we keep trying we will hit on the right drug and herb combo and finally get rid of the babesia.
Hopefully your husband's recovery will go much quicker but you do need to be aware that 18 months to 3 years is pretty much the average treatment time for the majority of patients who are lucky enough to respond and have pretty much everythiing go right.
An infection of the central nervous system is not a quick fix.
Bea Seibert
Posted by Razzle (Member # 30398) on :
It was my understanding that true ALS does not respond with any sorts of improvements to treatments; treatments can only slow down the progression of the disease. But Lyme-ALS is known to show improvement with abx.
Also, consider the possiblity of ammonia accumulation in the brain (Dr. J in KS believes all ALS-Lyme patients have global ammonia accumulations that must be cleared before symptoms can improve).
Posted by Buster (Member # 19472) on :
If it is true ALS, he would continue a downward spiral...
Posted by Mathias (Member # 5298) on :
Look into correlations between mycoplasma infections and ALS.
It is possible he is co-infected with lyme and mycoplasma.
Ceftin and/or IV Rocephin will not get rid of that combination of infections, they are both inactive against mycoplasma.