Lime Disease or ALS

Thank you. I have improvements - great strides. But it is often two steps forward, three steps back. Sometimes it's only one step back. Been a struggle to discover what I have in terms of coinfections. ALS symptoms keep me unsteady on my feet. BUT there are improvements. Sometimes I feel myself. Thank you, again. I will read what you recommend for the information that might be helpful. I would love to continue healing naturally but each time I get off antibiotics I backslide. I have been treated with steroids many times, which I understand impacts healing. Pretty deaf, which my doctor believes is due to my brain forgetting how to hear due to Lyme or coinfection, too. BUGGER!

Just to jump in a bit.

Why Can't I Get Better? is another book to read. I haven't gotten far into due to other things absorbing all my time, but there are several interviews with Dr H. Many can be found by searching Youtube. I believe that "Under Our Skin" is there. "Under Our Skin 2" however is only available for sale. I think I found it on the itunes store or one of the other video sites.

In the interviews, Dr H mentions patients coming to see him in wheelchairs and after treatment they walk out of the office. So don't lose hope.

As far as the seeing the spirochetes in your blood, I think that I saw that in Under Our Skin 2. One of the docs described how he was able to do it. He didn't just use a drop of blood. I think he put the blood in a saline solution and something to separate the Lyme from the red blood cells. He said it improved the chance of there being a spirochete available to see.

One thing to remember is that just because a test or something like the blood drop negative does not mean there is nothing there. That piece of wisdom came from my favorite doctor. It was after he ran a bunch tests and the nurse told me "everything is negative so there is nothing wrong with you." She is in the running for my least favorite person.

I did some research after I saw the thing about the blood drop and I'm pretty sure I found more. If I can find it, I'll post the info.

Someone mentioned Babesia showing up under a microscope. I read a story a month or so ago that there was a spike in Malaria in Maryland. The article mentioned that the health department had looked into it. Most of the time it is blamed on people traveling outside of the country, but none of these people had been out of the country.

The article also mentioned that a diagnosis of malaria is done by looking at a blood sample under a microscope to view the parasite. The article also said that under a microscope the two parasites (malaria and babesia) are indistinguishable. So it's likely the breakout is the result of tick bites that transmitted Babesia because it is know to be in that area.

Would it be cool to see the actual spirochete? Yes, but that's just intellectual curiosity. It is not at this time a diagnostic tool. I would say if you have a microscope, knock yourself out but don't be disappointed if you don't see a spirochete and don't get the idea that it means you don't have Lyme. Showing your doctor a drop of blood with a spirochete won't help you get treatment.

Lyme is still a clinical diagnosis. A positive test on the Igenex Western Blot is an excellent confirmation.

Kim

For this thread? Just hit the "subscribe to thread" button again. I do that frequently when I'm trying to rush through and answer as many posts as I can.

People with Babesia have malaria symptoms.

Can you post his test results? If it's an Elisa, we will need to see the reference ranges. If it's a Western Blot, you will see bands with numbers and a + , - , or IND beside it, please include those as well so that we can be of help to you.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

​ And, here's another good place to find helpful detoxing routines: ​http://www.tiredoflyme.com/detox-methods.html​​

I'm really sorry that I can't be of any help in helping you to find a Lyme literate doctor for your Dad - the closest country that I have a LLMD listed in is Romania. But, if you have family in another country that he can stay with either for his appointments or just stay with during his treatments, please do email me and let me know what countries they live in and I'll see how close I can get.

These lists are mainly for US based LLMD's, but I do know that some people have gotten referrals to LLMD's in other countries as well:

You can email the Tick-Borne Disease Alliance at
​[​​url]​medicalinfo@tbdalliance.org​ for LLMD referrals

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​And www.LymeDoc.org

And, you can try to see if anyone on this forum is seeing a doctor that is helping them in a country close to you by starting a new thread titled something like "Looking for LLMD in the ​​
(insert the country/and city) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

Analysis Result Units Reference Range

Borrelia-IgG (ELISA) 18.07 + RU/ml < 16.00
<15,9=neg. 16-21,9=borderl. >22=pos.
Borrelia-IgM (ELISA) 3.30 RU/ml < 16.00
<15,9=neg. 16-21,9=borderl. >22=pos.

Borrelia burgd.
fully antigen IF-G 2 + SI < 2
Borrelia peptid
mix IF-G 2 + SI < 2
Borrelia LFA-1 IF-G 1 SI < 2
Borr. burgd.
fully antigen IL-2 2 + SI < 2
Borrelia peptid
mix IL-2 2 + SI < 2
Borrelia LFA-1 IL-2 2 + SI < 2

CD 57 Flow Cytometry

Natural Killer
Cells Heparin 4 - % 6 - 29
Natural Killer
Cells absolute 64 /µl 60 - 700
Herapin
CD-57 positive
NK-Cells Heparin 1 - % 2 - 77
CD-57 positive
NK-Cells absolute 18 - /µl 130 - 360
Heparin

Clinical Chemistry

Leucocytes 7 tsd/µl
Erthrocytes 5 mill./µl
Hemoglobin 15 g/dl
Hematocrit 47 %
MCV 88 fl
MCH 29 pg
MCHC 33 g/dl
Thrombocytes 251 tsd/µl
Neutroph. Granulocytes 60 %
Lymphocytes 26 %
Monocytes 12 %
Eosin. Granulocytes 2 %
Basoph. Granulocytes 1 %

I'm used to "analyzing" the Igenex WB tests...not as familiar with those ones.

But what my pea brain is seeing/deciphering...is you have lyme disease.

Something that also stands out is your Natural Killer numbers are very low...which often happens with lyme disease.

There are people who are in wheelchairs that get well again. The most important thing is to stop the progression first ...a.s.a.p....then take it from there.

You should watch the documentary 'Under Our Skin' and it's sequel 'Emergence'. See if you can rent the one time viewing for something like $4.99.

underourskin.com
There is a young lady who can't walk in it...and she gets well...



Also, there is a Dr. Martz - who is in that documentary...diagnosed with ALS...even tested negative a few times for lyme...and is now fully functioning.

Take a look at this:


/www.youtube.com/watch?v=UY9FdULDV6M

He tells his story.

He may get worse before better...better to try n fail then not try...cure is not a word we use ..remission ...david martz lives on abx but its better than dying ...also ellie lobel was in a wheelchair twitching and she is working now ...

under the eight ball " is another great documentation, his sister dies a horrid painful death from als because they cant treat lyme ...i will try to post link on this thread later

Post Edited (bluelyme) : 1/28/2017 5:05:39 PM (GMT-7)

The tests are from BCA-LAB in Germany.. I have heard about Dr. B.. in Germany.. Generaly i am looking for this disease couse i am not sure if this disease exists or not.. But you have to pay for this movie.. And for the test that its not valid.. And for the rest.. I mean looks like a big job this disease.. I am not negative and i am not saying for the 5$.. I just dont want to put my dad in a process without meaning.. And of course if i go to a doctor i have to pay alot and i am not so rich.. The test only costs about 500 euro.. For BCA clinic i heard its 30.000 euros.. And i am coming back to my main question.. If you guys are better with treatment or someone you know personaly.. Not from documentery.. I hope you guys to understand what i mean.. (My dads twitching stop or decreased to a large extent i think couse huge dose of methylcobalamin injections but hes bigest problem is hes balance) Thanks

Post Edited (George T.) : 1/30/2017 4:34:36 AM (GMT-7)

Traveler.. Can you tell me any specialist Lyme Dr. in Germany couse i cant find on search? Dr. B.. is one of them? you know him? If i decide to use something like rifampicin or Minocycline without a specialist Dr. but with a regular nevrologist is this wrong?

Post Edited (George T.) : 1/30/2017 4:34:19 AM (GMT-7)

George - I do have a name of a Dr. B. in Germany.

You can contact me via email and I will give you the information I have.

I do not have much information...and don't know much about this Dr.

If you do have a Neurologist who is willing to treat you...then that is fine...but you will want to be on two antibiotics ..not just one. And...is the neurologist willing to treat you for more than a couple of weeks?

You can start with one...eg minocycline...and then a few weeks...or month later add in Rifampin.
That is a bartonella treatment protocol.

july -

i have a list from a member (A mod that hasn't been on lately) - who lives in Europe...for LLMD's in Europe.


I'm not sure if it's the same as what you have.
Can you forward me your list and I will compare? Is it a list for all of Europe (which might be the same as what I have)...or just Germany?

Bluelyme - He dont seem to has atrophy.. But yes i will talk to my nevrologist for the treatment.. First i will talk him for borrelia to see hes reaction.. Thanks

George - I sent you another email a few minutes ago.