Intro and history

Hi,

I have recently ran across this forum. Thank you for all the information, I need to study it all, a bit overwhelming to comprehend and apply especially when I cant think straight.

My brief history:

Prior - Asthma and pneumonia twice. Always exercising and love to scuba dive. Also I was always outdoors, mountain biking and hiking in S CA. Traveled a lot around the world for work. So I was in tick territory.

I started having fatigue issues in 2004. I was diagnosed with CLL. I saw a specialist and nothing else was done, told me to live with it.

I am wondering if I had lymes then.

Fatigue continued to grow from 2004, needing to sleeping alot, backing off my activities, changed my job for less travel. Figured I was getting older and slowing down (55 now).

September 2014 symptoms hit me hard with fatigue and I felt like I had the flu. I could not get out of bed. After 10 doctors saying nothing is wrong I found an LLMD. I started with him in June 2015.

From June 2015 to now:
LLMD started my treatment by addressing my Thyroid, fibromyalgia and CFS, which was his first diagnosis. I was prescribed T3, testosterone, diet, supplements, lots of blood testing. Multiple blood test for lymes, including IgeneX, all negative.

He continued to treat me with supplements and diet until January of 2016. At which point he believed it is lyme and treated me with Doxycycline 100 mg twice daily and Tinidazole 500 mg twice daily for 6 weeks. After six weeks still doing terrible, no change.

I had to change doctors due to location and cost. I started with a new LLMD. He prescribed supplements, candida diet and Argentyn 23, Sublingual 3 times a day and 3 times a day with a nebulizer, dosage of one teaspoon. He also prescribed 250 mg of CBD daily. Plus I use cannabis to help my appetite to eat (I have lost 15 lbs now) and to deal with pain. The cannabis seems to help a great deal with pain, depression, nausea and asthma. I stopped using inhalers now for asthma, dont need them since I started smoking cannabis. I feel like I can breath again, I am amazed.

Today, my symptoms all line up with the list for lymes. The neurological symptoms are getting worse. But I feel I am going crazy, is this lymes? The blood tests say no but the symptoms say yes.

I read a paper yesterday about an issue to diagnose lymes in patients with CLL, that CSF flow cytometry and Peripheral blood Flow Cytometry can be used to diagnose. So is it common for CLL patients to test negative for lymes?

Am I on the right path that this is lymes ?

Thank you for reading through the note. I am so hoping and praying to figure this out.

Hi scubaboy!-

Welcome to our community. I am sorry to hear that you are still suffering.
Has your LLMD ever treated you for any co- infections? Example: Bartonella or Babesia?

A tick's saliva is very filthy, and Lyme disease rarely travels alone.

I hope you ask any question that you might have. This is how we all learn. I hope that you stay around, there are a lot of friendly and knowledgeable people here.

Also are you doing anything for detoxing? There is a a lot of great information in the"New to Lyme?.....Start Here!" thread at the top of this forum.

Best Wishes!

Scubaboy, I would also like to welcome you to the forum. I came here too when I was questioning what in the world was wrong with me and the medical Doctors couldn't figure it out.

The symptoms that you have been having could indeed point to Lyme. I hope you can find the answer because I believe that is half the answer. Don't give up until you find the answer and please do leave the results of your Western Blot tests for PeteZa to see. She is very knowledgable.

You should know too that there are many who have had test after test for Lyme with negative results. The reason for this is that the little Lyme spirochetes are very good at hiding from the immune system which is what they use to detect for it.

Hi everyone, wow, thank you so much for your inputs and support. I really appreciate it, I dont feel so alone.

I did read the new to lyme intro, thank you so much. It confirmed to me that it is lymes or lymes is part of this. I will need to re-read many times. Also your new to lyme section is the best information I have see on lymes online. thank you so much!

Co-infections - yes discussed with LLMD, he prescribed the silver, argentyn 23, and the intention was to go after co-infections. But it doesnt seem to help after 2 months. I have looked for use of silver and I dont seem to find many using it.

Blood results - thanks, i will post.

detox - I do foot baths with epsom salts daily. I have been drinking bone broth for about 2 months. Starting kale,arugula, carrots, broccoli,paresly , celery and ginger, drink, 16 oz per day.

LLMD - I have an appt next Tuesday. The LLMD had me do a NutraEval. So I will have the results from that next week. He said he is trying to see if any nutrition is getting in.

Thanks all...

Hi Scubaboy!-

I personally haven't tried silver, but I have read of other people here that have used it. There is a "Search" at the top of this forum. Click on the"Search" and type "silver argentyn 23 Lyme". This will take you to other Lyme peoples threads and discussion about silver.

When you do a search, always put the word " Lyme" at the end so that it will take you to previous discussions from the Lyme forum.

Or you can always start a new thread and ask if any has tried a certain med or supplement, or and question about it.

I am happy to hear that you are detoxing by using a daily foot soak! And that you are eating healthy! YAY!!! :)

A lot of people here, including me have to detox daily and use multiple ways of detox. I would highly recommend that you please look into more ways of detoxing. There are a lot of ways that we have to continually rid the toxins that are left behind from the dead Lyme bacteria.

I hope that your LLMD appointment goes well next Tuesday!!

Best Wishes!

Scubaboy - So, it looks like you have Mycoplasma Pneumoniae - which is one of the lyme co-infections.

Do you have a copy of your Igenex test results?
If so, did you have any bands that showed IND or + beside them?

If you have IND or + on lyme specific bands, it is significant when diagnosing lyme disease.

I don't know anything about the CLL - could you give a little more information? Is it something that could be misdiagnosed...and actually be Lyme disease?

I'm glad you have an upcoming LLMD appointment.

Thank you Girlie and Krimpet for responding!!!

You are both Awesome! :)

Thanks again!!

So Igenex results - beside each band it will say one of three things:

+ which means positive
- which means negative
IND which means Indeterminate (not negative...something showed..but not dark enough to be positive.)

The Igenex WB won't say "non reactive" - that's not a term they use.


Do you have any IND bands?


"...they tested my blood, found CLL and stopped there." What did they find other than a high white blood cell count? Are there other 'markers'?

." And now tramatic events in the past and surgery opened the flood gates to pain. Does that make sense, does that happen?Maybe I am just crazy too."

No, you're not crazy. With Lyme, that can happen after surgery, or other traumatic events in your life....it's something we see/hear about all the time.

Scubaboy I'm sorry you are having a rough day. But I wanted to let you know that you and I are going to need much more silver than what we are consuming to turn cookie Monster blue (lol).

Hang in there and ride the wave!

Girlie, I have a friend who's been making his silver for about 5 years and consumes very large quantities. Still not blue.....

Krimpet said...
Girlie, I have a friend who's been making his silver for about 5 years and consumes very large quantities. Still not blue.....

Good to know...lol

Hi All:

Well saw the LLMD yesterday and he determined a clinical diagnosis of Chronic Lymes. I knew from everything that was happening to me but was still hoping. For my wife, well a big hit in life, as you all know. Plus then the job is going away. Ive been able to work from home but now with the neuro stuff I cannot think clearly enough.

So surfing the Tsunami, Here is the plan to begin...

First the Doc told me upfront that he doesnt treat with IV abx. He said he would refer me to another LLMD if I wanted to do so. I decided to proceed with his approach. He has patients that are healed (wheel Chair to walking) and has many other lymes patients.

I hope this was the correct decision???

The good part is he is 15 minutes from me, takes my insurance and my step daughter just got a job there a few months ago, so I can get a discount.

Oh boy, I hope I am headed down the right path.

Results from a NutraEval by Genova Diagnostics are in. Doc said it was bad and wanted to see before starting treatment. Antioxidants a-lipoic Acid, B1, B9 and Omega 3 oils labeled as "high need". Vitamins A, C, E, B2, B3, B12 and Pancreatic Enzymes labeled as "border line"

Detox - 2 capsules of Advaclear at night and Ultra Clear Renew. He wanted me to hold off the detox bath, but do the feet. He is concerned about herxing.

abx - Starting with low dose of doxycycline 20 mg/2 per day, with grape fruit seed extract 250 mg 2x per day. Biaxin 500 mg per day.

IV Therapy - "Super Immune" once a week alternating with hydrogen peroxide once a week for 4 weeks. Plus Methyl Folate 1 mg, Alpha Lipoic Acid 150 mg, and Glutathione 600 mg.

Super Immune cocktail is .45% NS, Vit C 500 mg/ml, Calcium Gluconate 50 mg/ml, Magnesium Sulfate 500 mg/ml, B5 250 mg/ml, B6 100 mg/ml, Selenium 200 mcg/ml, B-complex 100 mg/ml, sodium Bicarbonate 84 mg/ml, Hydroxocobalamin 1 mg/ml.

The Alpha Lipoic Acid, when I was given it today, I stopped shaking and the neuro symptoms back off some...Am I crazy, does this stuff have the kind of effect?

Finally I am to drink ASEA water and hyporedox.

Thoughts ?

Thanks!

Hi Girlie, thanks for your feedback and your support. I will check on doxy dosage. 20 mg is low. He said he wanted to keep low to begin. I didnt get a chance to ask him but will email the LLMD.

I will dig into the IV support to understand.

Anyone else out there have done these types IVs?