Feeling lost and at a low – what has helped you?

Hi all,

I finally tested positive for Lyme back in 2018 after years of desperately trying to find a diagnosis. My doctor put me on the Buhner protocol for only three months (I do not think that should have sufficed since it wasn't a new infection, possibly many years old!) but I did not really see a let up in my symptoms. They never really left, though now they seem to be back with a vengeance.

These were my results:
IgM –– Indeterminate: 41, Nonspecific: 58, 64, 66, 93
IgG –– Indeterminate: 41, Nonspecific: 62
Qual result: Reactive
Patient od: 0.159 (borderline cutoff is 0.120, reactive cutoff is 0.151)

From what I understand, I am not CDC positive but I am positive with IGeneX by two bands, 41 and 93.
I also tested negative for any co-infections.

My symptoms seem to come in waves, where I go from feeling iffy to genuinely feeling like my body is shutting down on me. My temperature goes up and down, I feel very run down and almost drunk, I get spacey and foggy, feel anxious and panicked, my blood pressure will drop, I get terrible pressure in my head and - at times - headaches, and I dealt with gastric issues in the past.

I am getting retested with IGeneX (just ordered my kit) since my most recent test was last year with Stonybook and I'm interested to see if they differ any.

Regardless, I look up to your guidance so much was wondering what you all think my next steps should be, should IGeneX be positive (which it certainly feels like it will be).

My LLMD said because it's an old infection he wouldn't recommend oral antibiotics, so I would have to get IV treatments (which scare me since I have a clotting gene). Otherwise I could go the herbal route again, but I would have to stay on it much longer than I was before.

What has helped you? How long were/are you receiving treatment?

I feel at a loss at this point and like nothing has helped, so anything would be appreciated. Thank you

Post Edited (Kristin_) : 4/20/2020 12:29:08 AM (GMT-6)

Girlie said...
"My LLMD said because it's an old infection he wouldn't recommend oral antibiotics, so I would have to get IV treatments (which scare me since I have a clotting gene). Otherwise I could go the herbal route again, but I would have to stay on it much longer than I was before."

Antibiotics do work for older infections. There are reasons for IV abx.
1) if your gut can not handle the orals.
2) If you have a very severe case and/or critical structures are compromised: ie if you have ALS type symptoms for example.

If you're not comfortable with IV abx....no harm in trying the orals and see how you respond.

3 months isn't very long on herbals, especially to do all three major infections. (lyme, bart, babs)

Even if the Igenex test is negative....doesn't mean you don't have lyme.
Band 93 is lyme specific.

Thanks, Girlie! I really appreciate it. Are there any disadvantages of doing IV as opposed to oral that you are aware of? He said that I'd have to get a port, which turned me off very much since I've had an SVT in my arm before...

i did iv for a yr but hands down bvt has helped me the most...

What about IM injections?

Monolaurin inspired nutrition
Lysine
Boron
Bentonite clay
Oregano oil Natural factors brand
Msm
Turmeric
Fresh parsley chew it like tobacco

I would hesitate to do iv unless you are in very bad shape. The benefit is they are not as hard on the gut.

I had that drunk feeling a lot in our old home in North Carolina. Don’t really have it anymore. Like WBF said, maybe explore mold too?

I’ve retested infections - always hoping for clearer answers - yet it just never seems to help. My second igenex test looked very similar to my first one except I dropped a band and some of the +++ went to ++ or +.

Girlie said...
Some people who do IV abx get a port...others' get a picc line.

I believe the picc lines can't get wet...but ports can. I don't know of any disadvantages - just that you have that in your body.
who would be doing your infusions? I've read that some patients get a nurse come to their home.

I think you'll get some information from members who've done IV abx.

Yes, I would get a nurse to visit however many times necessary, but my body unfortunately just tends to find issues with things so something so invasive just freaks me out.

Thanks so much for bumping the thread... a lot of great info here! I appreciate it so much

elvin said...
Monolaurin inspired nutrition
Lysine
Boron
Bentonite clay
Oregano oil Natural factors brand
Msm
Turmeric
Fresh parsley chew it like tobacco

Thanks, elvin. Will save all of this

WalkingbyFaith said...
Have you looked into mold exposure and mold toxicity. That drunk feeling and balance issues are very common with mold toxicity. I walked like a drunk. Candida/yeast can cause a lot of the same symptoms, as well. They’re all fungus.

This is interesting because I did test positive for candida/yeast through gastric samples a few months ago, but wrote it off.

My knowledge on mold is extremely limited –– this may sound like a silly question, but how do you test your environment? Can you physically sense the mold at all through sight or scent?

blueize said...
Kristin I did IV for several months at home. The company supplied the antibiotics which I infused myself.
A nurse visited once a week to change the dressing on the picc line and also to draw labs.
For me it was much easier on the digestive system. You must keep the picc line dry!

Thank you! I appreciate it

My daughter has had a picc line for about 10 months. She was very, very sick though. Severe neuro lyme and was in a wheel chair. It helped a great deal. Pain is much better and she’s completely out of her wheelchair. She infuses ceftriaxone and is now getting 2 days of ertapenem a week. she cannot get it wet. Does weekly dressing changes and labs at our local hospital, so there is some maintenance to it but we infuse at home in the evenings so it’s become a way of life for now. She is 17 and does well with it for the most part. She also takes oral antibiotics and and meds for babesia so I cannot say that the IV has been the magic bullet. I believe it has all made a difference. I agree with others who’ve said that most can do well without IV. There are many oral antibiotics and herbs that get into the brain well. I personally do not regret doing IV for my daughter as she was in crisis. She still has many symptoms so we are still treating but things are much more manageable. No one can really say what is right for you. I think it depends on your degree of severity, gut health, affordability, and your response to orals. Good luck with whatever you decide. I personally believe there’s nothing worse than the damage the infections do so I feel good that we’ve been aggressive in my daughters case.

Oh, I just realized I didn’t answer your other questions. You can see mold if it’s on the visible surface of something, but mold is often hidden in dark, humid or wet places - inside or behind cabinets or furniture, inside wall cavities, underneath carpet or flooring, inside HVAC ductwork, in basements, attics, and crawlspaces, etc.

Mold thrives on moisture and food. Different species need different amounts of moisture. Some can grow in very low moisture. A major food source is cellulose (wood and wood based products) - think paper faced drywall. Also wallpaper, adhesive behind wallpaper and under flooring, insulation materials if they have gotten damp, dead bugs, houseplants and their soil. Mold spores will adhere to dust particles and travel through the air from one area to another. Use a sealed system HEPA vacuum regularly to remove dust and other particles. Avoid sweeping, as it will make tiny particles airborne where they will be inhaled. Use Swiffer cloths, as they help attract particles instead of disbursing them.

Keeping everything clean from dust, dirt, food particles, etc and dry with low humidity (below 50%) can thwart the onset and growth of mold. However, if you already have mold sources in the environment, you will need to have the sources removed (ex - remove water damaged or moldy building materials or belongings or contaminated ductwork) and the environment cleaned (avoid chemicals and antimicrobials as they can cause chemical sensitivities). Once the sources are removed and the cause identified and corrected, then you maintain a healthy environment by keeping it clean and dry.

Mold toxins are what give mold a smell. Different species have different smells and you may or may not detect a smell. The absence of smell doesn’t mean no mold. Many people cannot smell mold until they become sensitized to it and have unmasked - meaning they have sufficiently gotten out of exposure to it and the sensitivity then becomes apparent. Then they smell it everywhere. While in constant exposure, they are usually completely unaware they are being exposed.

If you know the history of a building, you can have a pretty good idea of whether or not mold is there. If the building has ever had any leaks anywhere that were not found and completely repaired immediately with water damaged materials removed or completely dried out, there’s a very high chance that there are sources of mold contamination in the building.

Other pretty sure chances of mold - dirt crawlspace, old building, basement (especially in an older building).

Post Edited (WalkingbyFaith) : 4/23/2020 7:03:15 AM (GMT-6)